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July 3, 2008

Unfortunately A New Beginning

In a couple of weeks I'll see the 3rd anniversary of my cancer surgery. I should be real happy to be alive and functional, but that takes a back seat to starting a new round of chemotherapy. In a way, I'm no better off than I was 3 years ago. This new "recipe" has a new drug that I don't know the name of yet, and a variation of the 46 hour drug that makes me carry the infusion pump in that "damn" bag. Since I really was lucky last time when my body got used to the drugs, I am looking at the down side and figure this time I'm going to have problems, get sick, lose my hair and all the other bad things. The doctor was very friendly Wed., but brief for all that is going to happen. I did ask for another 2 weeks before starting which he agreed to with no hesitation. I need to gain some more weight. The appetite stimulant is working and I could eat all day, but I've only gained 6 lbs. I need to gain at least 4 more in the next 2 weeks. I can continue taking that even when the chemo starts, so hopefully that lack of appetite the drugs cause will be counteracted. I think if I can keep my weight up the drug effect will be lessened. I still get tired so easy. I have so much to get down outside and I get pooped real fast. It makes me mad and discouraged. Unfortunately, I get little help from anyone. I guess that's about all I can say right now. The chemo begins on July 22nd. Wish me luck and good health to all of you.

Posted by Robert at 11:46 PM | Comments (1)

June 12, 2008

Latest Cat Scan

Being a writer of sorts, it's strange that I'm having difficulty on how to write this. So, excuse me if I ramble a bit. Yesterday was the doctors visit and it got off to a bad start when I lost another pound. Then when the doctor came into the exam room, his body language was not good and he passed the stool he sits on and sat on a chair in the corner. I asked good or bad news and the answer was bad, but not real bad. The facts. Two months of the drugs and they basicaly did no good. The liver was ok, with a 1 mm shrink, but a new nodule was in the lungs and one other nodule in the lungs had grown 1 mm. So, I'm done with that set of drugs. I thought they were working as I had all the side effects as before. At least we held our own in most cases so I can't disagree with the decision to try these drugs again. To explain things and maybe to make me feel a little better, the doctor said that I was in no danger at this point as the liver is a rather large mass and my biggest nodule is like a thumbprint on it. He said I was safe for at least 12 weeks, although the lungs are starting to be a problem. The good news of this, maybe, is he gave me 3 weeks off to build my body back up. He is going to consult with the other oncology doctors to plan a new treatment program and one that would be sure to cover the lungs, as well as the liver. This was one of the best visits with the doctor I've had. He seemed really concerned about me and more than willing to sit there and answer any questions I had. I was tempted to ask the question about how long I would have a liveable life if I quit, but passed it up. I was getting along with these drugs so good, I'm afraid I won't be that lucky next time. I did get my prescription for the appetite stimulent and have taken 2 doses and have had no increase in appetite yet. It says it may take 2 weeks. Another $250 drug, but of course Humana gave me a generic for $4. Mentally, I have mixed feelings. I'm going to enjoy the time off again, but the new drugs do worry me. I know this is a long term thing as we've been through 3 years of this next month, but it can be depressing at times. I really get mad when I do the least bit of things outside and get pooped real fast. I don't know if I will ever recover the muscle mass that I have lost these past 3 months. I don't know what else to say at this point except to wish all of you good health, be happy with it, don't take it for granted and enjoy it.

Posted by Robert at 8:47 PM | Comments (0)

May 9, 2008

Chemo Treatment #2

My second treatment went well as expected. I told the nurse I had good news and bad news. The good news, I feel fine. The bad news, I feel fine. Still a little concerned the drugs are working. I was surprised yesterday. I was cutting frozen green peppers and they "bit" me. A good sign the cold sensitive drug is working. I had handled ice cubes with no "bite" so maybe just not as bad as before. I'm having some bad constipation cramps and that seems to be a drug reaction/side effect this time. I guess it could be worse than that, but it's pretty uncomfortable to say the least. I had an unexpected problem with the pump. It started beeping before I even got out of the clinic. We silenced it and I stopped to check a couple of work questions at the hospital and it went off again and indicated air in line. I made some calls and found out how to stop and re-start. The bad is, it kept going off every 10 minutes or so after pumping 2ml. At home I fed the animals, planted my tomatoes and cut grass with it still beeping every 10 minutes. I thought wrong that it would clear itself. Now, at 9:30 I start making calls again. One nurse(?) tried to talk me through purging it but I was too dumb to do it. So, they sent a nurse out at 11:00 and in 3 minutes she had it working. I was trying to re-install the cartridge upside down. Dumb me. Chalk it up to an educational experience. If it happens again I know what to do now. Made my 46 hour pump last 48 hours. I'm pretty sure I will not get sick and if I can find a remedy for the constipation problem I should look forward to normal times. I also found out that part of the anti-nausea medicine is steroids. Interesting. Not helping my weight. I lost another 2 pounds. Guess that's an update for now. Good health to all of you.

Posted by Robert at 7:54 PM | Comments (1)

April 30, 2008

Chemo Update

I promised an update after one week of resuming my chemotherapy. First, I should mention that I neglected to include Avastin in the drug "recipe". Since it had stopped working, I thought we would substitute something else, but they said it had something to do with my blood and had to be in the mix. I am happy to say that I have had no, almost, side effects so far. I did have 3 days of constipation, but I'm not sure if the drugs were the cause since it's opposite of what should have happened. Being a "worry wart" of sorts, now I have to wonder if the drugs are really working. For one, it seems the cold sensitive drug is not making me cold sensitive. I made what could have been a mistake when I reached in the freezer and grabbed the ice cube tray not thinking, but I had no sensation. I was eating ice cream by Thursday night. Is that meaningful? I got along pretty good with the 46 hour bag. It wasn't until 10 minutes before getting it disconnected that I forgot it was on the floor and I got up and walked away. The sudden jerk on your chest is a quick reminder. I feel really good and will start working weekends again this week. I'll have questions next week for treatment #2, but not sure I'll get any answers. I did take an anti-nausea pill Thursday and Friday nights just in case, but don't believe they were ever needed. They do work great on clearing sinus problems. That's it. Nice to write something positive and I hope that trend will continue. Until next time, good health to all of you and don't bet too much on the Kentucky Derby.

Posted by Robert at 9:25 PM | Comments (1)

April 10, 2008

Another Cat Scan

We've been at this "adventure" now for some 33 months. I lost track of how many cat scans I've had, but this was either 13 or 14. I always get concerned when scan time comes. Think the worst and hope for the best. I was really worried with this scan. I haven't felt good for several weeks and lost weight which has held stable for now. I just had a bad feeling. Here's the story. Cindi, the NP, came in the room and asked if I had seen the scan. I said no and just answer one question, what was the measurement of the largest liver spot. She said 5.5x5.3. I'm very careful with my language, but my reaction was to say sh**. When we started this mess it was only 4.2 x 3.4. This spot has the diameter of a tennis ball!!!! Of course, when the doctor came in he was not smiling and said we need to start chemotherapy right away. Asked what, he again said we would try the same "recipe" of chemicals as before. Since I have been off of them for 2 1/2 years they should work again and after a scan in 2 or 3 months if they're not working he would try something else. I asked if I had to have the 5RU and carry the damn bag for 2 days. The answer was yes, you'll have the "damn" bag for 2 days. Don't think he liked my damn. I asked to start with a lower dose so I wouldn't get sick and he just smiled going out the door and said it was up to Cindi to keep me well. That's the bad news. We start in 2 weeks. I hate having to do this during the summer, so much that needs to be done. At least the cold sensitive drug shouldn't be problem, except my iced tea. I guess the death door has opened a bit further. Too bad my home support is zero. I wish you all continued good health.

Posted by Robert at 12:52 AM | Comments (1)

March 12, 2008

Mind Games Again

It's been awhile since I have added to this diary because everything has been so routine with the treatments. Yesterday was another dose of Avastin with wonder of if it is really working. I was a little upset because I continue to lose weight, another 3 lbs. Not much but I am down 9 lbs. from my original weight gain, 3 lbs. from 2 weeks ago. I'm not feeling good , but not sure if it is physical or mental. And, my next cat scan is a few weeks away and that always has me thinking what will it be? I try to remain positive, and make these posts positive, but let me share a bit of creative writing that sums up my negative feelings.
THE HALLWAY
My life is like a long hallway and I'm trapped and cannot get out.
At one end of the hallway is a door with a sign, DEATH.
At the other end is a sign, FREEDOM.
I cannot open the freedom door.
Forces keep pulling me toward the death door, which is open a crack.
I fight back to the freedom door, but I cannot get out.
The forces continue to pull me and each time the death door opens further.
I know that someday the vacuum of the death door will pull me in.
I don't know when that will be.
I keep asking, why can't I open the freedom door?

After writing this I was surprised at how accurate that it describes my feelings. I wonder how many other cancer people feel the same way?
Wish me luck on the cat scan and I wish all of you good health.

Posted by Robert at 1:07 PM | Comments (4)

January 10, 2008

Disappointing Doctor Visit

Once again, the doctor wanted to give his short analysis and split. Not when I had to sit almost an hour to see him. The visit got off to a bad start as I have lost 5 pounds tis past week. It disturbs me, but no one else. The main topic was the results of my latest Cat Scan. The doctor indicated there was some small growth on my main liver spot. Just a couple of mm and a couple of new very small nodules, an indication that the Avastin is not being as effective. Of course, one of the options is to start chemotherapy again. I declined, so we'll go anoter 3 months and scan again. He almost promised that chemo would be necessary before the end of 2008. When asked what, he said probably the same combination of drugs we used before, without the experimental drug. That doesn't make sense to me as we stopped because they had stopped being effective. Since we are not in any critical state, we will continue the Avastin. I wish I had been more confrontational, but that just makes him mad. I got what I wanted so maybe next time. The scan results showed something new. Degenerative changes in the thoracolumbar spine. Sounds like old age and maybe why I have so many back aches. Nothing else scanned have any changes. So, even though the doctor was negative, the results were mainly positive. I do have to remind myself that you cannot take anything for granted. Things can change rather quickly. I'm thinking of Barbara Carter, for all you family members. I wish good health to all of you.

Posted by Robert at 9:43 PM | Comments (5)

December 18, 2007

Avastin #50

Treatment today and I was guessing this should be about 50 Avastin treatments and I was informed that I was exactly right. Sounds like some kind of landmark. One more treatment and it's Cat Scan time again. Everyone assumes that the drug is still working. I was told, with some relief on my part, that if and when the Avastin stops working there are a number of other anti-body drugs now that would keep me from a full blown chemotherapy go around. My blood work is great and as a side effect, the Avastin helps with other problems that anti-bodies help with. I finally got some sort of answer to why the cost has gone up so dramically and the answer is supply and demand. Sounds like the oil industry. Avastin is now approved and used for metastatic breast and lung cancer along with colon cancer. You'd think they would just make more, right?
I'd like to pass along a little story. An attorney in Louisville was broadsided by a city bus and had serious injuries, including brain damage. After months of rehab. he tried to go back to work and couldn't function. He was said to have been brilliant and with a future with no limit. Now he is confined to home and has to hire help to get him through the day. The point of this is to say that "things could be worse" for all of us. This is his quote at the end of the article. "Since the wreck, my life has become an unfinished painting sitting over discarded in a dark corner, stacked against the wall. And that is unacceptable to me. To me, a life without purpose is pointless." What more can you say.
I wish all reading this a Joyfull Holiday Season and hopefully one of good health.

Posted by Robert at 2:16 PM | Comments (0)

October 20, 2007

My Latest Cat Scan

Thought for the day. It is said that there are two certain things in life, death and taxes. But, there is a third. You never see your doctor at the appointment time. At least the wait was good news. My CEA (tumor marker) score had dropped from 118 to 78, a good sign to start the news. As for the scan there were no changes, no liver growth, no growth of the spot on the colon suture, no change in the kidney stone or the abdominal aneurysm. There was a new item in the scan, which I could not ask the doctor since I can't have a copy of the scan results until after I see the doctor. It said, "small periumbilical hernia containing only fat." Whatever the heck that is. Something to ask in the future. Also, "There is no significant retroperitoneal lymphadenopathy." I think I need a medical dictionary. So now it's the same routine, three months of Avastin and another Cat Scan. I'm having a little problem with the insurance company. After paying claims for nine months they say I haven't been a member since December of 2006. Strange they would send a new card for 2007 and benefits book and pay the claims all this time. As I have said in the past how important insurance is, the bill for one month is $23,000. Humana is supposed to be correcting their mistake. Not sure I would refer anyone to them. Good health to all of you until next time. .

Posted by Robert at 2:37 AM | Comments (1)

September 20, 2007

Drugs and Your Brain

Now that I'm back on my Avastin routine, treatment every two weeks, I really don't have much I can say. So, I'm going to talk about two questions I have been "pondering" lately. First, why am I having such vivid memories of past events? Second, could drugs, in my case Avastin, be affecting my brain cells? Some background to this. In promoting a National Geographic special the newspaper said this: "Our brain, for example, includes 100 billion cells, about as many as the stars in the Milky Way. What did you do with your neurons today?" It is my belief that the brain has stored everything that has ever happened to you, a computer hard drive of sorts. We all get the question occasionaly "do you remember when . . ." and most times we do. What is happening to me is it goes much further. Without being asked something, just a comment about something triggers a response in my brain that brings up an event related to the comment and in vivid detail although it may have happened 50 years ago. An example, we took a trip west some 8 or 9 years ago. I can take you step by step from the time we flew out of Louisville until we returned, naming some 50 events that happened. Even while typing this those events are racing through my mind without even trying to recall them. Things pop into my head for no reason and no prompting, just all of a sudden something that happened years ago is recalled. No, I'm really not crazy! As to my second question, this all seemed to begin when I went on just the Avastin program which really makes me wonder if the Avastin is the cause. Now, with just writing this about Avastin, my brain wants to start reviewing all my treatment program. Wierd!! I didn't bring this up to the doctor on my last visit as it is just since then that I wondered if Avastin could be the cause. No telling what he would say, probably after laughing at me. Yes, in a way it is funny. It is not something causing any problems and it certainly is interesting on what memories might surface and what memories are still hidden and won't surface. Maybe I should write the Avastin folks and see what they say. I do know that it is not going to go away and maybe is becoming more intense, again making me feel Avastin is the cause. I could go on with more examples, but I think I said enough for you to get my point across. It would really be interesting to me to get some responses about this "condition". In the meantime, what did you do with your neurons today? Good health to all of you.

Posted by Robert at 3:29 PM | Comments (0)

September 6, 2007

No Chemo Yet

Turns out I had a pretty good week. Last weekend at the hospital I got my usual "therapy" from the staff, support and encouragement. I also had an interesting chat with an ER doctor about books and she reccomended two for me. This was topped off by a very touching "note" from an old friend. I still was dreading my doctor visit on Wed. fearing the worst. The nurse gave me an advance on what might be said when she told me my CEA score had gone down. I went from a 7 to 25 to 169 and now it's back down to 118. The doctor came in with a smile and actually sat down to talk. He was very pleased since we only had two Avastin treatments before the blood test. So, no chemo and continue the Avastin for 3 months and then my usual cat scan. The statistics show that only 1 out of 8 respond to Avastin when it is used alone, with no chemo with it. I am one of the lucky ones where Avastin is working all by its lonesome self. We did talk about my two concerns. Why did we go 4 months when we had some growth after 2 months. He said it was a judgement call and we really needed to see how the disease would act without the drugs. I think that was as close as he would get to saying maybe we shouldn't have done it. The growth on my suture line should not be a problem he thinks. The drugs should take care of it. All in all, a pretty good visit for a change, even though I had to wait in the treatment room for 40 minutes to see him. Amazing how ones mood can change with a very few words. I'm feeling good and I wish all of you good health until next time.

Posted by Robert at 2:25 PM | Comments (1)

August 15, 2007

An Avastin Surprise

Yesterday was my "medical" day, treatment at the clinic and to the family doctor to remove a small cyst. Simple, what could go wrong? Well, you know something did or I wouldn't raise the question. As I was being "plugged up" I mentioned the cyst that is about 3 inches from my port and needing to get out of here close to 3:00 to have it removed and of course not looking forward to it. The response was "wait a minute, you need to talk to Cindi." It seems that Avastin slows the healing process and that "hole" that would be created could be a problem. Two years using Avastin and I just find out this kind of side effect. Wonderful. So, this was not an urgent thing and I had to cancel it. I did stop by the doctor's office and apologize and get the results from my blood tests. I was a little surprised that everything was fine. I'm not used to having something fine. By the way, the cost of my last Avastin increased some 150%. I couldn't believe $11,000???? for one dose. I keep thinking maybe they made a mistake, but probably not. Thank God for insurance. That's my update. Good health to all of you.

Posted by Robert at 1:07 PM | Comments (0)

August 1, 2007

Back on Drug Treatment

I feel a little better writing this than my previous "depressed" message. Yesterday I began my drug treatment with Avastin only. Once again I was greeted by the friendly staff that had my coke and pretzels on the table with a bonus of chocolate chip cookies. I did quiz the NP on whether the doctor had read all the radiology report and was aware of the growth on the colon suture line. Yes, he was aware of it and one of the reasons he wanted the Avastin started right away. No doubt that another chemo stretch is down the line sooner that later most likely. The second part of the afternoon was with my family doctor and we had a long talk about things. My biggest concern with him was the coronary artery calcification. Hopefully, he is right in that he down played the problem as cat scans are not a good way to detect this type of problem. If I had no pains or shortness of breath I shouldn't be concerned with that. What a relief. I am going to go back and have some blood work done that hasn't been done in two years. He could detect a little depression on my part, but we both agreed no medication. If it does get worse he feels he could help with one or the other drugs. Lets hope it doesn't come to that. I told him I and others wondered why when the Avastin was working would you stop for four months. Did the doctor make a mistake. Of course he wouldn't answer that direct. I think he may be right that it could be part of the experimental drug program to see what would happen. It's water over the dam now. The clinic nurses do agree that the doctor is brilliant, but not good with long explanations of things. I can buy that. So, my crisis isn't a crisis, but I definitely have problems to be addressed. Like I said from day one, the drug treatment is a lifetime project. I hope my body doesn't have a problem with the Avastin being re-introduced. It didn't before so I feel "safe" this time. Initially no problems. I'll continue to hope for the best and I wish you all good health.

Posted by Robert at 2:55 AM | Comments (1)

July 27, 2007

Bad Cat Scan

After a relatively quiet four months of no drugs, I anticiated this cat scan would most likely put me back on Avastin at least. I got a clue from the NP in her routine exam when she said my CEA tumor marker had jumped from 25 to over 100. The doctor was rather quick to point out that with continued growth we needed to start the Avastin again for 3 treatments over 6 weeks and by blood test know if we had stopped the growth. The big problem is my right liver lobe. We were at a measurement of 1.8 x 1.3 when se stopped the drugs. We went to 2.8 x 2.2 in May and this scan was 3.5 x 2.5. Not a real big deal but it does make me wonder why we went the four months. Can new chemotherapy be far ahead? Okay, this is pretty much what I expected. I got my usual copy of the radiology report and read it when I got home, and did I get a shock. The first thing I read was a nogule adjacent to the suture line on the colon that is suspicious of carcinoma with a size of 2.2 x 1.9. Gads!!! If that was not enough in reading further I came across a statement of coronary artery calcification and recomment clinical correlation for coronary artery disease. Double gads!!! Why didn't the doctor mention this? Needless to say, I made anappointment with my family doctor to discuss all this. I am both a little angry or upset, take your pick, and also really depressed at this point. I have my treatment start next Tuesday and will go from there to see my family doctor. I issue an update next week on prognosis or whatever. Cheery bit of news, right? Until next week, good health to all of you.

Posted by Robert at 2:48 AM | Comments (2)

July 1, 2007

Do You Have Medical Insurance? - Postscript

I've never added a PS to an entry, but I thought this would be appropriate. After posting my gripe, I watched an interview on Larry King with Michael Moore about his new film "Sicko". I have never been a fan of Michael Moore, but the guy came across as sincere and intelligent. His comments about the health industry were so on target. A review of his movie said it was pot-stirring documentation and incredibly persuasive. I may even have to go see it. We are the only "free" country without universal health care and rank either 38th or 39th in the world for health care. Kind of shocking. He states it is part our fault that we keep voting for people that won't fix the problem. How true. I thought this deserved a PS. I hope you agree.

Posted by Robert at 5:15 AM | Comments (4)

June 29, 2007

Do You Have Medical Insurance?

Not much happening this month, but I thought I should add some comment to my diaries. First, I had a quick 10 minute clinic visit to flush my port. Stange when I'm usually there for 3 hours. I continue to be frustrated by our unregulated drug companies. I really don't know what I, or anyone else would do without insurance or Medicare. I'm happy that Avastin works, but I can't find out who doubled the price in January. Of course Genentech, the manufacturer wouldn't answer the question, nor the doctor, nor the clinic. They only made $1 billion dollars on that drug last year. It's a bit scary when I add up what this treatment has cost so far. The hospital bill with surgery, port, and cat scans is roughly $115,000. The drug treatment is roughly $120,000. When you look at $235,000 and we're not even finished yet it is a little hard to comprehend. Without insurance I guess I'd be dead or bankrupt. Well, that's my gripe for the day. I hope next time I can say something a little more possible. Good health to all of you, and pay your premium.

Posted by Robert at 3:23 AM | Comments (5)

May 24, 2007

Latest Cat Scan - 90% Good

My anxious week has ended. Cat scan was done on Monday and the Doctor visit on Wednesday. Overall the results were good. But first, the bad. I was shocked that blood tests from last week showed a CEA score of 28, up from 7. The cat scan showed there has been an interval increase in size of the lesion in the inferior right hepatic lobe now measuring 2.8 cm x 2.2 cm. It previously measured 1.8cm x 1.3 cm. The good news all the additional lesions are unchanged compared to back on January 8th. Even my kidney stone is still stable and hasn't caused me any trouble for quite a while. So, what did all this mean to the Doctor in my 5 minutes with him? The CEA is just one measurement and he doesn't see it as a big deal, or so he says. The one increase he does not feel is enough of a problem to start treatment yet. He hinted again at starting another round of chemotherapy before the end of the year. When we resume treatment we would probably go with only the Avastin, no more experimental drug. I'll do another cat scan in 2 months again and I would guess that might be the end of my break which I have come to appreciate and enjoy. But, who knows. He also hinted that there may be some new drugs toward the end of the year. The staff there said they miss me and since they just got some pretzels in they gave me a bag to take home. How sweet!! The rest of the radiology report is pretty much the same as always. Oh, I also have lost 3 lbs. which I guess is not a big deal except I'm trying to keep my weight up. Unusual for most people trying to lose weight. I guess this sumarizes the latest so will close and as usual say to you good health.

Posted by Robert at 2:08 AM | Comments (2)

April 10, 2007

No Drugs - A Difference

A visit to the clinic today and the drug study is now officially finished with my last blood samples and port flushed. I've had no drugs now for 4 weeks and I have really noticed the difference. My face is about 90% clear and a great relief. My sinus problem that was blamed on infection, wrong, allergies, maybe, is 50% better. If it was an alergy, it was from the experimental drug that everyone wanted to deny. Amazing that the final study papers I signed listed upper respiratory problems as a main side effect. I don't know why they kept saying no. The other change I noticed was the general way my body felt, good. I hadn't thought that the drugs really made any difference, but they obviously did. Bottom line to all this is I am beginning to feel like a normal person again. The only, I hope, temporary roadblock is my having to work extra days at the hospital which I'm not used to. So, I have been tired the past few days. My next cat scan is scheduled for mid-May. Be nice if I could continue drug free a little longer. That's my update. Until next time, good health to all of you.

Posted by Robert at 3:15 PM | Comments (1)

March 29, 2007

The Doctor is Predictable

It's been a week where something went wrong every day here on the farm. I didn't need that from my treatment program too but I did get a big surprise. My worst farm day was Monday. I was feeding the animals and was interupted midway through. When I returned to the barn all the donkeys were out. I had the gate shut but not secured and one of the males (they're always the guilty party) had pushed it open enough for everyone to get out. No way to get all of them back in. They stayed out all night and by morning decided on their own to go back in. I had hoped that would happen. A little hard to move nine donkeys. My llamas aren't that anxious to get out and are in another fenced area. Tuesday was to be another treatment day. The clinic called on Tuesday morning to say don't come, but come in to see the doctor on Wednesday. Seems as though the experimental drug study had been canceled. On thinking about it, my prediction was that the doctor would offer me a break in treatment again. and I was right. In short, the drug company evidently has all the information they needed or want and ended the program. I guess since the FDA approved the drug they don't want to give freebies out any more. The doctor did suggest I take 8 weeks off and I accepted. My upcoming cat scan was cancelled. My final blood work for the study will be April 10th when I need to flush my port and a new cat scan will be scheduled for the end of May. If and when I need to re-start we would probably go with the anti-bodies again and I would have to pay for the panitumumab if I used it. At least we are not talking about chemotherapy again yet. The break will be welcomed so hopefully my face will clear up. The bad is anticipating what the ct scan will show. Strange that Tony Snow, the press secretary has what sounds like exactly what I have. Quite an adventure this is, feeling good physically, not the best mentally. Guess that's it for now. Good health to everyone.

Posted by Robert at 1:33 PM | Comments (0)

March 16, 2007

Predictable Drugs - Unpredictable

Hard to believe that this is the 44th entry in this diary. Also, hard to believe that we've been "doing drugs" past 18 months now. You would think that everything would be predictable by now. The treatment procedure is. The drug side efforts continue to fool me now and then. My two problems have always been hair and skin condition. I thought the hair problem was solved after losing arm and leg hair it was growing back nicely. Now all of a sudden I've lost leg hair and most of the arm hair that grew back. Clinic says it's just a normal recycling of the hair. Sounds dumb to me. My skin condition used to flair up after treatment and pretty much clear up by the next treatment. Lately it hasn't done that and in fact has spread from mostly forehead to the rest of my face and neck, chest and back. It also is producing "bumps" that are sore and some that when bumped, brushed, or yes picked, they bleed. I tell myself that reactions could be worse so don't complain too much. I was happy that I achieved a good "normal" weight. That too has become a little unpredictable lately. Three weeks ago I gained 3 pounds and this week I lost 6 pounds. I don't worry about a little gain, but the loss bothers me. I know it's a short term thing and we'll have to see how it goes. So, that's the latest. Bring on the warm weather!!! Good health to all of you.

Posted by Robert at 12:25 AM | Comments (2)

February 15, 2007

What is Avastin

Dear Mother Nature, Please turn the heat back on in Kentucky. Oops, sorry, we're supposed to talk about Avastin. Avastin is bevacizumab. Now you know why they call it Avastin. I asked the doctor once how in the world they named these drugs. He said "you don't want to know". I never did pursue that. Avastin is an angiogenesis drug. To start angiogenesis, a tumor sends out signals to blood vessels. These signals cause new blood vessels to grow toward the tumor. Once these new blood vessels reach the tumor they provide the supply of blood that provides oxygen and nutrients to the tumor. This helps the tumor grow. Avastin is though to work by blocking one of the key signals that causes angiogenesis, a protein called vascular endothelial growth factor. This may allow Avastin to affect the tumor in different ways. It may cause the blood vessels to shrink away from the tumor, blocking the oxygen. It may also cause the existing blood vessels to change in ways that help the chemotherapy reach the tumor more effectively. And, it may interfere wilth the growth of new blood vessels, helping to block further growth of the cancer. So, this is the drug helping me. Out of my learning search, I contacted the manufacturer of Avastin, Genentech, and asked what studies they have on how long Avastin would be effective. Another answer of nothing real definite. The drug has only been used since 2004 and they did have an 18 month study I guess of survival. I told the lady I'm approaching 18 months so they better study me. The length of time does give me some concern, naturally, what else could it do. I always wonder if I ask too many questions. Be happy it's still working. Oh yes, another technical term. My new CEA blood test I discovered. The technical name is carcinoembryonic antigen. Gads! Treatment this week was normal. I evidently sounded a little depressed so I was offered a Zoloft prescription. No thanks, not interested. A lot of cold weather blahs I hope is the problem. Now that you're "educated" I guess I'll close this entry. As usual I wish you all good health.

Posted by Robert at 1:14 AM | Comments (0)

January 31, 2007

A New Measurement

I would advise you in advance that I'm not sure what I'm going to say, so I may be rambling a bit. I've been battling this cancer thng for about 18 months now. I've asked a lot of questions, got answers to some and a bunch of I don't knows. I keep asking questions and keep an open mind to find out anything I can. Well, in the past few weeks I've discovered some things I should have know and feel a little stupid for not knowing. First, I checked the website for Avastin, my main drug now, and found an improved site from a previous visit. I learned some things about Avastin I should have known. That was what I intended to write about, but I'm still checking on something so will put that off until next time. I've also become aware of the CEA blood test, mainly with thanks to WendysBattle web page. My treatment of 2 weeks ago included blood for that test. Since that was give my 6 viles of blood for the drug study, I asked Julie what all of them were. Of course I didn't understand all of them and was surprised that CEA was one of them, all this time. After thinking about it, I called and asked if I could see all of those results since the beginning. Today at treatment I got more than I asked for. Nothing from the blood the clinic took, but I had pages and pages of all the blood work that has been done since August of 2005. Unfortunately, the Nurse Practioner could not give me as complete an explanation as I would like to have. CEA is a tumor marker, for a short explanation. My baseline is 5. The first test, before chemo, was 536.5. I couldn't believe that was correct, but I guess that shows how bad off I was at the beginning. It quickly dropped to 7.3, then 3.6, 3.1, 2.9, and then started rising to 3.7, 6.2, and this month 6.0. There doesn't seem to be any concern that it has risen some, so I'm a little in the dark on really what I've learned. I really need an explanation from the doctor. Maybe this is another case of a little knowledge is dangerous. As I learn more I'll pass it on. As for my routine treatments, my skin problem has been pretty much confined to my forehead. Not too bad although some of the larger spots get sore. It doesn't help if I pick at them like some teenager and their pimples. In closing, a bit of humor. Although my taste buds are close to normal there are some obvious changes, no hot spices for one, no big craving for sweets (probably good) and one goofy one. On the few occasions when I decide to eat some liver it has become as tasty as eating a steak. I don't think buying liver at Walmart makes it any better than it's been for years. Last time I ate 3/4 pound of it and could have eaten more. So, come and visit me and I'll fix you a delicious liver and onions dinner. Just kidding. Will close now with a wish that you stay warm and stay healthy.

Posted by Robert at 12:48 AM | Comments (0)

January 11, 2007

Cat Scan #8

With the usual concern over my cat scan results I am happy to report that the scan showed no growth and everything holding stable. I am also happy to say that I got the doctor to stick around and answer a few questions. I think the secret is to put questions on a piece of paper and pull that out with the comment of having a few questions. I asked him why he wanted to give me that 3 month break I didn't want and it was simply a kind of good will offer he makes to everyone who has gone through chemo and assumes you might need a break. I talked to him about Wendy in Canada (wendysbattle.com) and her referring to a CEA score. I evidently had that way back in the beginning and not since so he ordered that at my next treatment. It's a blood test and measures antigens if I remember what he said. I asked him his best educated guess would be as to how long the anti-bodies would be effective. The average is a year, which I am approaching, but also said only a few hundred have gone this long, I assume with the experimental drug. I guess that makes me a good study patient. We discussed my reaction, the breaking out. I told him I had made the comment that I hadn't been breaking out quite as bad and sure enough after you say that two treatments back I had a severe reaction. In addition to the normal forehead, it covered my nose, cheeks, chin, neck front and back, some in my scalp and on my back. That really surprised him, as it did me. So far, last weeks treatment is not making it worse and there is some improvement. Still, as agravating as it is, I can put up with it knowing it is doing what it's supposed to for my liver. I even talked a little with him as to what would happen if more chemo is needed and I didn't do it. Best I make no comment on that because you can guess the answer. I continue to run into people who have had chemo, or a friend or relative who went through it and I am so grateful that my experience was a "piece of cake" in comparison. i shudder at the horror stories I hear and many of them are using the same doctor and clinic as me. So, we rest easier for 3 more months as the battle continues and we wait for cat scan #9. Good health to all of you.

Posted by Robert at 1:36 AM | Comments (1)

December 21, 2006

Drugs, drugs, drugs

It's been awhile since I've posted anything, so I thought I had better update things. And the things continue to be rather routine, which is good. There has been one minor change. After 14 months of these drugs you'd think there wouldn't be changes, although they were minor. My skin condition after treatment has been pretty much breaking out on my forehead, sometimes it gets sore, sometimes not. The last two treatments have had minor skin problems on the forehead, but now I'm getting stuff (for lack of a better term) on my face and neck that's not a big problem. The big news is cat scan time is 3 weeks away. Always a tense time. I thought I would end this posting with a little humor on myself. Working at the emergency room at the hospital is observing a lot of people. With 25 plus years in security I've done a lot of that and it is interesting. I see many of our elderly people come in with a plastic bag full of drugs. Got to be 8 to 10 bottles and I think to myself I hope I never have to do that. Well, I got to thinking of my bag I bring to work with my Coke and chips and candy and pills. I started counting the pills. I had prescription drugs for my sinus, the decongestant, pain pill for the kidney stone, and one for diarrhea. Plus, I had Tums, Vivarin if I got sleepy, an Advil sample for headache, Benadryl and a Cepacol (sp?) for sore throat. I come prepared. Looks like about 9 different things. Guess the laugh is on me. We certainly live in a drug culture. What would we do without them. Anyway, I hope you all have a great Holiday season and a healthy New Year.

Posted by Robert at 1:51 AM | Comments (1)

November 23, 2006

Back To The Old Routine

As the old Gene Autry song goes, "I'm back in the saddle again. Back (or out) where a friend is a friend." My second treatment since the re-start kind of shows that. I added a family doctor appointment to my Tuesday routine so I showed up at the clinic 15 minutes early and asked if they could get me out of there by 4:00. I went instantly to triage for the usual blood pressure, temp. and weight. Gads, I gained 7 pounds the last two weeks! Then to Room 1, my room they say. Before I could sit down the nurse was getting everything ready and one of the helpers brought me my coke, cup of ice and bag of pretzels. You think they know me? I made the comment that this was better service than Holiday Inn. The nurse said they didn't have HBO, but had the Travel channel, which is what I watch all the time. See why it almost seems like a second home? Of course, the treatment was routine and they got me out at 3:45. The family doctor visit was to do something about this sinus problem. I ended up with three prescriptions, stronger than the last effort, so I hope this knocks the infection. I think 6-8 months of this is enough. I do have the expected skin problem with the experimental drug, but like I say, if that's the worst I have to put up with I can handle that. I got a laugh when the family doctor said he got a letter from Louisville Oncology saying the doctor had sat down with me and discussed my treatment and my decision to re-start the anti-bodies. Since I laughed his comment was "I guess that didn't happen." Right you are doctor unless you call 30 seconds in the doorway a sit down discussion. At least, I assume, he respects my decision since we're "back in the saddle". I was thinking, I have received some comments on these writings, but it would be interesting if people (other than friends and kin folk) would send a comment to see who in the heck is reading these ramblings. In the meantime I hope you all have a nice Thanksgiving and good health to each of you.

Posted by Robert at 1:50 AM | Comments (2)

November 3, 2006

Back on Drugs

Well, the title says it all. To explain I need to review the events of Tuesday and Wednesday. The clinic called on Tues. knowing I had questions for the doctor about dropping out of the experimental drug study. They suggested I come in and see the doctor Wed. I said next week would be fine when I get my port flushed. But, the doctor will be out of town next Wed. We finally decided it will be four weeks and I could get the port flushed, and give my blood samples, this Wed. So, I was all set one week early. I spent Tues. night thinking of what I wanted to ask the doctor and how I should ask. I should be smart enough to ask a question without putting the doctor on the defensive, but I seem to have failed at that in the past. The clinic was very busy Wed. and again some new nurse faces and I got one to explain why I wanted to see the doctor and my concerns. And wouldn't you know, the doctor came in and shot down my little speech again. It went something like, "I understand you're concerned about dropping out of the study. If you'd be more comfortable being back on the drugs you are. Start again next week." Thirty dollars, thirtly seconds. As I'm leaving the regular nurses are, "Where are you going?" They were all set up to do the port and blood. Hey, see you next week for the whole show. I had so many people tell me how great it was to be off the drugs, even temporary, but they didn't understand the long range possible effects. I feel I made the right choice since I don't feel any different being off the anti-bodies than when I am on them. It just seems to me that if something is working, why stop? It's bad enough knowing that someday these things aren't going to work anymore, but let's hope that will be a long way down the road. Funny how quickly things can change isn't it? My 13 month routine is back. Now with two FDA approved drugs I should feel more comfortable and forget about making any funeral plans soon. The thing I'm dreading most is the cold weather ahead. My finger tips are still cold sensitive and I hope they're not as bad as last winter. I'm going to make an effort to be more positive about all this. Until next time, good health to all of you.

Posted by Robert at 11:44 AM | Comments (1)

October 25, 2006

Mind Games and Llamas

No, the llamas aren't playing mind games. I will say something later about them. It's me that's still playing mind games with myself. It's 3 weeks now that no chemicals are being put in this old body and I do feel pretty good, but I did while getting the anti-bodies. I was always a little anxious going from cat scan to cat scan, but the results were always good so the anxiety level was pretty low. Now the anxiety is more life saving, waiting until January to see if the lesions, or spots in my language, have started growing again. I try to not think about it, but that's easier said than done. I did find out that if I'm off the experimental drug for more than 6 weeks I am out of the program. So, if we have to start the anti-bodies again and use that drug it won't be free anymore. Wonderful. They will continue to track me for several years.
Now for the llamas. One of the readers of this diary suggested I say something about this slightly strange animal. I guess since it's part of my title maybe I should. After moving to this little farm 12 1/2 years ago I got my first two llamas. It was just one of those things you are attracted to so I did it. We went from two to buying two more, male-female pairs. Then we bought three at an auction. Then we had births and at one point had thirteen. We are down to four now. They are a very smart animal, all with different personalities and they remember forever if you do something to them they don't like. The most asked question always is do they spit? Yes, they do, but it's usually between two of them over food. You learn when the ears go back and the head goes up, give them room so you don't catch any of the food splatter. That's not too bad. If they're really mad, they cough up a very smelly green slime and you don't want to get hit by that. The spitting really doesn't happen that often. They're really a very quiet animal most of the time. If they're a little upset over something they will hum. In all these years I've only had one bad mishap. We were selling a young male and Easter, our #2 llama, had sort of adopted this little guy. When we caught him and tried to take him out Easter tried to stop me and I got the green slime, head, face, and one t-shirt that went in the garbage. The buyer finally isolated her long enough for me to get the baby out and Easter never forgave me. Like I said, they never forget if you do something they don't like. It's been fun and educational to have the llamas. Unfortunately, the selling market dropped considerably and we've stopped breeding. Four ladies left and that's just fine for now.
Better stop. I could go on and on about my favorite animal, so let's just say good health to all of you. Until next time . . . . . . .

Posted by Robert at 9:30 PM | Comments (0)

October 11, 2006

Latest Scan - A New Beginning

Saw the doctor today and as usual it was a couple of tense days waiting to get the latest cat scan results. My blood pressure was 155/88 so I guess that tells you something. As usual I had my questions in mind, based on what the results were, and as usual I expected replies like "I don't know" or "We don't know". And, as usual the doctor came in and his opening remarks shot down my whole preparation. His opening line, "We're going to give you a break from treatment." Say what????? Okay, here's the low-down. The cat scan was still showing no new growth and everything is stable (they forgot to say anything about my kidney stone). He felt I deserved a 3 month break, so will cat scan again in January. If the lesions have grown we would probably start again with just the anti-bodies. Thanks to my help and 999 others, the experimental drug has been approved by the FDA so it is available to everyone now. I guess that means it works. The bad news in all of this is he said that sometime in the future, be it 3 months or 3 years I would have to have a second round of full chemotherapy. Not something you really want to hear. After 13 months of this I kind of felt like a lost puppy with not making my 2 a month trips. But, I do have to go in once a month and have my port flushed out. I guess for the next three months I'll just write one entry as I do want to keep this open. One other interesting point from people reading this (I always wonder how many). I was contacted about a new cancer magazine, CRM, and they want to use excerpts from my diaries in a blog column. Of course I said yes. I may be forgetting something, but this seems to bring everything up to date. Soooo, good health to all of you until we meet again along this dusty trail of life.

Posted by Robert at 11:32 PM | Comments (2)

September 22, 2006

Clinic Routine - Home Scramble

I guess it's a good thing that I haven't much to write about. The anti-body treatments are ongoing and very routine. I've lost count, but another Cat Scan should be coming up next month some time. My kidney stone is bothering me less for some reason, but my sinus problem continues and is very aggravating. My biggest problem lately is the dumb donkeys!! There are two fields off of the barn..Things had been going very good with the llamas and male donkeys in one field and the momma donkeys and their young in the other. Well, we had what I guess you could call "an apple basket upset". I went to the barn one day and all the llamas were on the donkey side with two male donkeys and the "head" jack, Bucky, was with all the females in the other field. He apparently pushed the connecting gate out and we changed sides. Then Bucky and his son, Eeyore, who he is always picking on ended up back with the llamas. So, we took those two across to the "small barn" and field. Then the other day, just when I though things had settled down, they broke through the fence onto the neighbors pasture. You know the grass is always greener on the other side, right? He called and I checked and they were back. The next day they were back over there again. They came back for feed and I found the hole and put four strands of barbed wire over it. I hope they don't break that down, but it wouldn't surprise me if they did. Gave me one heck of a back ache before I was done. We've procrastinated over selling any young ones so we may be stuck with them for the winter. I know at least one, Jemima, is pregnant again, getting fat already. Oh the joys of a part-time farmer. The donkeys make the llamas seem like angels. A good thing I'm operating at atleast 90%. Days like yesterday I need to be 100%. Okay, it's all right to laugh. Until next time, good health to all of you.

Posted by Robert at 5:55 PM | Comments (3)

August 26, 2006

Anniversary

Well, this week was a milestone of sort, one year of treatments. In that time I had 12 chemo treatments, 14 anti-body treatments, 6 CT Scans and the one ultra-sound. This is the 34 th entry in this diary. I kidded the nurses at the clinic about not having a cake to celebrate. I should be happy that all the scans show nothing growing. There is still the lingering mind game about how long this will keep working. Right now I'm more concerned with my stupid sinus problem. I have settled on Clariton and its generic equivelant. It keeps me breathing and sleeping. My kidney stone still hurts and if I keep taking the pain pills as I should, and don't always, it is very tolerable. It will be interesting to see where I am one year from now. I'm assuming I'll still be here. So, really nothing new, breaking out 2 days after treatment and that's about it. I wish you all the best of health.

Posted by Robert at 6:05 PM | Comments (0)

August 10, 2006

Continued Good News

I received my copies of the ultra-sound and radiology reports Wed. when I was at treatment. As the Dr. had said in his always brief remarks, there are no new spots on the liver and nothing has grown. I was a little surprised at the ultra-sound report as it stated there were multiple nonobstructing calculi (stones). I guess they are too small to be seen on a cat scan?? Let me give some examples from this report to show how difficult it is to interpret these reports. For example, there is no evidence of hydronephrosis. Also, there is normal renal cortical echogenicity bilaterally. I'm sure this is part of our everyday conversation??? I did finally go to my family Dr. about my sinus condition and got some medicine for it and I'm happy to say it is working great. Can finally sleep. So, we're on for 12 more weeks of treatment. The clinic is getting to be like a home away from home. One year since we started all of this. I guess I'm aive today because of that years worth of visits. Oh, I forgot, we're not going to do anything about the kidney stone at this time since it is in a position to not cause major problems. I take 2 or 3 pain pills every day and sometimes forget I have it, unless I forget to take a pill. Before I bore you, I guess that's about the latest on this continuous journey. Good health to all of you.

Posted by Robert at 12:05 PM | Comments (0)

August 4, 2006

Treatment will continue

Well, it looks like our home page has been changed and this blog made the front page. Does that mean I say something significant or the only colon cancer blog? Anyway, the good news from the doctor is that the latest CT scan shows no new spots and no change on the ones there. The only real choice is that we will continue with the anti-body treatments. I guess the researchers can have fun trying to decide if it is the Avastin or the experimental drug or the combination that is doing the job. All I know for sure is as long as this works I don't have to go through another chemotherapy bout. Nothing was said about the ultra-sound. I think it was a waste. I'll get my copies of those reports next Tues. when I have the next treatment. I almost missed my cat scan. The clinic gave me an appointment slip that said Wed. Fortunately, at work on the Sunday before, Mike had seen my name on the schedule for Mon. I checked with them in Medical Imaging later that night/morning and sure enough I was on the list for Monday. I politely told the office girls at the clinic that they made a little error. My latest problem is sinus. I had hoped the doctor would give me some help since I've had a little problem with my right sinus since beginning treatments, meaning to me that the drugs have some part in it. The trouble with specialists is anything out of their field seems like greek to them. He just said if it didn't clear up he'd refer me to an ear, nose, throat doctor. In the meantime, I can't lay down and sleep as it's draining into my throat. Have tried three different over the counter stuff and all have the same results. I can breathe fine, but all drain when I lay down. So, I haven't had alot of sleep the past few days in a recliner and I have to work tonight. It may be a tough night to stay awake. I may quit the pills today and hope I can nap this afternoon. Solve the big problems and suffer with the little ones. What a life!! Anyone have any suggestions for me?? Guess that's it for now. Good health to all of you.

Posted by Robert at 4:46 AM | Comments (1)

July 13, 2006

A New Problem

Before the serious, a humorous event. The last writing I talked about routine. This weeks treatment had the tables turned on me. I always bring a carry bag, mainly for my cd player and the little blanket the clinic gave me. I had it packed and walked off and forgot it. I was asked three times where my bag was. Everyone noticed I had broken my routine. The new nurse practioner, named Cindi, was more friendly. Maybe someone said something to her. Anyway, when asked about pain, etc. that they always ask, I again mentioned by "back" pain which no one pays any attention to. But, I told her I've come to realize it's not my back but down in the kidney area. She looked at my two inch thick folder and said I had a kidney stone. Wonderful. It seems this has been on the CT Scan report since day one. It is called an 8mm nonobstructing calculus in the lower pole of the left kidney. She called the doctor and told him I was having 24 hour pain and ordered an urtrasound to be done Monday. Also, got a prescription for some pain pills that do help if I take them. I had copies of all the radiology reports made. The kidney calculus started as a 6mm but they keep saying it's stable. The ultrasound, as I understand it, is to see if there is any danger of it moving. Seems that would have happened in a years time. I'd say the doctor is reacting to something he should have paid some attention to long ago since he never once mentioned it. Beginning to wonder about him. I would like to chart all these "spots" for comparison, but the language is difficult. I've never read something with so many words I couldn't even begin to pronounce. You think you're "educated"? Not after you read these reports. Should be intersting at my next doctor consultation, an ultrasound and a Cat Scan in the next two weeks. Be sure to tune into the next installment of "what does this mean?" Until then, good health to all of you.

Posted by Robert at 1:44 AM | Comments (1)

July 3, 2006

Routine Treatment, but . . .

Our lives are dominated by routine and it's interesting how we treat changes in our routines. I remember at GE when computers were introduced into our work, a big change in routine. The older employees balked at using them, but eventually had to "get on board". Of course when they found out you could play games on them it helped. After 10 months of treatments I have, of course, developed several routines. With 5 CT Scans I know that routine as well as the nurses who do it. At the clinic, the routine of the same staff treating you has been disturbed twice now with a change in Nurse Practioner. This last one has the personality of a rock. Don't even know her name. The nurse treating me has changed again with a new young nurse. She has been "out of routine" on all 3 treatments she has administered. The first time she forgot to take my BP and Temp. every 15 minutes of the experimental drug until the last 15 minutes. The second time she made herself a little chart so she wouldn't forget. I was napping but she didn't wait the hour between drugs. This past week she waited 30 minutes between drugs. I haven't said anything, but maybe I should. I haven't noticed anything different in reactions. Getting off the routine topic and on to the continuing saga of hair loss. I have a new conclusion. I did not lose any hair until the chemo treatments ended. I thought I just lost part of the hair on my arms and legs, but now it is near 100%. It's funny because the new hair was coming in while the old hair was still falling out. My arm hair is growing fast and I think the hair on my head is finally starting to grow a little again. I've lost some hair under my arms so I don't know if all of it will be replaced. I can't see that very well. So, things are pretty routine, but it does seem there is always a new twist somewhere. Until next time, good health to everyone.

Posted by Robert at 5:02 AM | Comments (0)

June 15, 2006

Another Routine Treatment

Treatments have become so routine I almost forgot to go this week. I guess that says I'm doing okay, which I am as far as physical. This past week I have been "down", not totally depressed, but on the verge. I can't stop thinking about the future. The only thing certain is going from one cat scan to the next, which is July 26th. I wonder how long the good news can continue. I know I really don't want to go through another chemotherapy. I have come to realize why there are cancer support groups, especially when you have zero support at home. Working at the hospital is my support group. Staff are constantly asking me how I'm doing, if I feel okay. Strangely, they seem to be sincere in asking. For those reading this that don't know, I have written three childrens/youth books and am in the process of consolidating them into one book. All my thoughts and energy are going to see this project through. Thanks to my daughter for her help we are getting close to submitting it to the publisher. I guess I'll live long enough to see that happen. Nice to not have any bad drug reactions to talk about. Good health to all of you.

Posted by Robert at 9:52 PM | Comments (0)

May 31, 2006

Another Routine Treatment

I was negligent in not writing about the last treatment and now we've added another treatment yesterday. I'm happy to say that both of them were pretty routine. My only problem is the breaking out from the experimental drug. It usually has it's peak and dies down. Last time it didn't and now adding another treatment I'm going to have a sore forehead. It has also spread around a little more than usual. I'm happy to say I was right about something. I tried to tell the clinic a cat scan at four months was not right. The girl from the experimental program told them the program calls for every 12 weeks so that was changed. After all this time I do know the routine. Guess that's really about it. Good health to all.

Posted by Robert at 12:48 PM | Comments (0)

May 10, 2006

A Doctor Who Really Listens

Today I visited my family doctor. We had a good long chat, about 30 minutes. That's unheard of to get that much time with a doctor. He clarified all I wanted to know, even though some of it was not the best news. I made the appointment to discuss my higher than normal blood pressure. That took about 2 minutes. He doesn't think it's high enough to worry about, but a good idea to keep monitoring it. At this time he'll do nothing about it. The liver is an all new problem. I did not have A spot. I had, and still have, several spots. Some of them are not much bigger than a pencil point. None of them have increased in size, which is good, but none of them has shrunk that much With the anti-bodies as the only treatment probably the best we can do is to keep them from growing. So, the future doesn't look real bright and as I had already come to grips with, looks like a lifetime of treatment to hold things off. He said what I already knew that this type of cancer can never to cured, at least at this time. I took CT scan pictures and radiologist reports with me, but the clinic had been keeping him informed as to what was happening so the scans weren't used. Obviously, he went into some detail, including the experimental program, and I'm just hitting the highlights of our talk. He was sorry that Dr. Stephens and I had our "disagreement" and said that if I ever lost confidence in what he was doing we could get a second opinion. He said he was confident of Dr. Stephens concern for his patients best interest and has had some of his own family members go to him. I just wish he could sit down and explain things like we did today. I guess that's what sets a family physician off from some specialists. I continue to learn alot from this experience. I do have a curious mind. I also have been reminded that a little knowledge can be dangerous. I'm sorry that I thought I was clear for the time being and just keeping things from returning. I had all these past months operating on false hopes and informing all of you falsely. I certainly will be much more careful in the future to not jump to conclusions from my self-diagnosis. Maybe I need to stop looking at cat scan pictures. I hope my hitting the high spots were clear to you, as bad as they were I guess I don't want to talk about them that much. At least my body is accepting the drugs with minor reactions, so we will continue for at least 4 months on the current program.
Good health to all of you.

Posted by Robert at 6:25 PM | Comments (0)

May 3, 2006

No Self Diagnosis

Well, it's been an interesting week. Had my CT Scan last Thursday and viewed it Saturday night while working. It looked to have a new spot on the liver. On Sunday, I had them run the pictures off so I could take them with me for my doctor visit today (really yesterday as I write this). I'm not a radiologist, but I've seen what the spots look like and there was one very clearly there. Needless to say I was more than concerned. As usual, the Nurse Practioner sees you first and I informed her of what I saw. She informed me that the written report from the radiologist said all was going well and the spot was shrinking. When the doctor came in, I jumped him about the difference in opinion and immediately ticked him off. Good move. We argued over what was said about the liver being clear and my recall that the last scan did not show anything. He didn't believe me. He again said there was mis-communication and he never said the liver was clear. I could tell he was mad as he did his silly graph thing for the fourth time. He gave the same options again, stay with the anti-bodies or stop. We'll do another scan in four months and if I stop and it comes back it would be another chemo treatment. No real choice but to stay with the anti-bodies which have very little reaction. I had some other items I wanted to talk to him about, but with him being mad he was pretty short with any response. He did suggest I see my family doctor about the high blood pressure, although he said the drugs tend to raise your blood pressure. So does being mad. This weekend I'm going to have the "scan girls" pull up the disputed pictures and make me copies as I didn't do that at the time. Need to get something for the $4000 it costs. I don't mind the twice a month treatments as they don't cause any major problem. I was happier thinking it was keeping new growth from happening and I still think that's what was said back in February. Oh well. You win some, you lose some, and winning with a doctor is asking for the impossible. Lost a lot of respect for him today. I don't think he's used to being challenged and I might not have been too polite. Hey, it's my body we're talking about. Guess that's it. Good health to all of you.

Posted by Robert at 11:24 PM | Comments (0)

April 21, 2006

Anti-body #5

It's been a hectic week, including no computer for a week. Following is a hodge-podge of thoughts. Away from treatment, a minor crisis at the hospital. Our officer in charge, age 50, had a massive stroke a week ago Monday. He's still not out of the woods completely, but doing some better. This caused work coverage problems since there are only four of us. So, I put in a 40 hour week which I'm not used to, topped off by getting stuck on Sunday night for a double shift when the relief man didn't show. It's taken me all week to recover and I'll be working 3 nights from now on, Fri.- Sun. The bottom line of this is a reminder that life is very fragile and I won't get stuck for 16 hours again. Now, as for treatment. Same old, same old with a couple of twists. I usually break out and in 2 weeks when it's treatment time again I'm pretty well cleared up. This time I didn't break out until the weekend before treatment and it was very sore stuff. And, I don't know how I missed it, but I did lose some hair on my arms and legs. I noticed a stubble on my wrist area that looked like new hair growth and by golly that's what it is. All the time wearing long sleeves and my scaly skin, I just didn't pay attention. Critical time again. That means CT Scan next Thursday and see the doctor the next Wedneday. Besides the cat scan I need to discuss my higher blood pressure, which now that I think about it started after chemo stopped. And yes, last Sunday tired and mad, I had it checked at the hospital and it was 5 pojnts higher. So, if you have any doubts, I would say being mad will raise your blood pressure. I hope I have good news to give you in a couple of weeks. Until then, good health to all.

Posted by Robert at 5:18 PM | Comments (0)

February 22, 2006

Anti-Body Treatment #1

To quote an old Gene Autry song, "I'm back in the saddle again." Oops, sounds like I went to an Ob-Gyn clinic. Anyway, I started the new set of treatments yesterday. Can't say I was real happy about going back, but, you do what you gotta do. My only concern is the increase of the experimental drug to 75%, which we called P since no one can pronounce the name. Always wonder what kind of warped mind comes up with these drug names that look like spelling mistakes. At least I've gone from a 6 hour treatment to 3 hours, and I don't have that stupid 46 hour pump hooked up. Almost felt naked leaving the clinic. I was a little surprised that I had gained 3 pounds and have topped 160 now. A long way up from the 139 when I got sick. Appetite is good and taste buds coming back. Still some foods I have trouble with. Have to take the fizz off soft drinks and the worst of all things is Hershey chocolate. It hurts my throat to eat it. I told the doctor's head nurse who was there yesterday and she was surprised, never heard anyone have that problem before. She suggested eating Dove bars. She is also the one who said I should drink 3 bottles of Ensure a day. Right, $100 a month for that stuff. I don't think so. I was told I looked robust, whatever that means. Got another freebe, two blankets, a little larger than a throw, of course with some drug names on them, anti-body drugs. That's one thing that has been good from the start, my blood count, white and red, have always been good. Saved taking another drug. I'm feeling almost "normal" and am looking forward to a little more improvement, especially getting rid of my cold sensitivity. I hope I can report progress the next posting. Good health to all.

Posted by Robert at 12:21 PM | Comments (0)

January 28, 2006

Experimental Drug Panitumumab Back at 50%

The end is near, hopefully. This treatment was very routine, experimental drug (Panitumumab) back at 50%. The new clinic was open and this was their second day, so they were a little disorganized, no cable tv yet, hanging magazine racks, coat hangers, clocks during treatment. This building is more than double the size of the hospital annex they were using and features PRIVATE ROOMS. I left with another doctors appointment for next Wed. I didn't know why. There was still debate on when to do the CT Scan. The clinic called Thursday with a surprise. They had set a CT Scan for Tuesday at 6:45 am. I thought it would be after the 12th treatment. Makes some sense seeing the Dr. on Wed. I hate that early hour. I am anxious to see what our progress is, so I won't have long to wait. The next post should be interesting. A final note not having to do with my treatment. My mother passed away Tues. night/Wed.morning. She was 2 months from her 99th birthday. Her quality of life had slipped quite a bit the past few months so it was somewhat of a blessing. I will always remember her as a great mother.

Posted by Robert at 1:16 PM | Comments (1)