Topic: Experiences From March 2001

This post is copied with revisions and updates from my "Introduction" Forum.  In more closely looking at the format of this tremendous cholangiocarcinoma Web site, I realize perhaps my Introduction should have been more general, with possibly the Experiences and treatments given in more detail in this "Experiences" Forum. 

I hope this repetition does not bore those who read my lengthy Introduction:
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In March 2001, when I was 67, it was accidentally discovered that I had cholangiocarcinoma and could expect to be around for only a year or so, although I could be lucky and last longer.  Unfortunately I told the doctor we'd have to go for the longer option -- a year wasn't enough.  Why?  Well after retiring as a librarian for about 36 years, I began my retirement project -- to restore a 1937 Studebaker.  By Mar. 2001 I had auto parts all over the house, in the garage, basement, back porch, maybe some under the bed, and also in 257 jiffy bags (identified on used library catalog cards, of course).  I knew I'd need more than a year to complete the restoration, and, certainly, my wife could not get the car back together!

In May 2001, at the marvelous Univ. of Wisconsin Comprehensive Cancer Center the skilled oncology surgeon performed a major liver resection -- removing the left side of my liver which contained about a 10.5 cm mass--but with clean edges and no evidence of cancer in a nearby lymph node.

I was "spot-free" for about a year until Apr 2002 when the growth metastized to  the right side of the liver.  At this point, in my case, because of the number of diverse spots, I was told liver resection was not an option -- and neither was a transplant, since the cancer would just reappear in a transplanted organ.

I then began a clinical trial of OSI 774 (now Tarciva) at the Univ. of Wis. Comprehensive Cancer Center--Madison in May 2002.  OSI 774 was very new and I was the fifth person in Wisconsin to go on that Phase II Trial.  Within two months some spots had disappeared and the few remaining were contained.  Tarciva is a targeted drug with minimal side effects -- allowing most normal activities  My side effects included upper body rash, some diarrhea, dry eyes, and (of all things) shallow but numerous and painful in-grown toe nails!  The  Tarceva worked for 18 months Nov. 2003 when the remaining spots began to get larger.  (During that time, I concentrated on finishing my auto restoration.  Maybe the paint fumes, lacquer thinner, and other chemicals in the body shop also "threatened" the cancer!)

Shortly after stopping Tarciva, I had successful surgical chryoblation of some of the spots in the liver -- a procedure not avalable for CC two years earlier.  However a couple spots were to close to a vital vein to be treated.

In Feb. 2004, upon recovery from the surgery,  and to treat the remaining spots, I went on a clinical trial of Gemcitabine (Gemzar) & Epothilon B.  This treatment did not work for me although I had the usual challenging side effects including low white cell count and hair loss. 

In May, 2004, I began a trial of Oxaliplatin & Capacitabine (Xelodia) (5-FU in pill form).  Amazingly, that worked for 16 months, until Oct. 2005, although the many side effects following each treatment were a challenge to deal with.  After a while I just accepted the routine and found other things to keep me busy.  (Having a "ton" of hobbies helped.)  That trial was stopped in Oct. because the spots became almost indistinguishable, but also because my plateletes took too long to recover between treatments (7 weeks at the end).

After 4 months, Feb. 2006, the spots returned and I went back on Oxaliplatin/Capacitabine "off study".  It was then I found out about the compassionate nature of Medicare.  Medicare said they would not cover the drug--which was only approved for cancer in the liver originating in the colon, not cholangiocarcinoma   in the liver which originated in the bile ducts.  Medicare said they "would not approve it, I could appeal, but it wouldn't do any good.  Did I have any other questions.  No? Well, have a nice day."  My options were:  to pay $12,00 for each treatment, or convince the insurance to pay, or work with the drug company for a better deal.  After a couple stressful months, the insurance was willing to pay.  Unfortunately we found the drugs no longer when I had my CT Scan two months later.

In July 2006 I began a trial on Panzem -- which didn't work, and for which I found the side effects very difficult to deal with.  The trial I was on required me to take Panzem orally precisely every eight hours.  After I took each dose, I had absolutely no appetite and no energy.  And, just when I was feeling better, I was scheduled for another dose!

In November 2006, I had SIR Spheres (radioactive beads) (also a new procedure not available two years earlier) inserted in the liver through a cather.   Of course Medicare wouldn't pay for that either although the secondary insurance came through again!  In December, I had a CT scan which showed the growth had stabilized -- which was the best the doctors' had hoped for.  My next CT scan is scheduled for Feb. 2007.

I hesitate to mention physicians by name other than to say the UW-Madison Compreshensive Cancer Center is tremendous -- one of the best in the country -- and in collaboration with other well-know centers such as Mayo Clinic, Johns Hopkins, etc.
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Below are two additional things I had or learned about since getting CC.

CT Scans:  I have never liked the CT Scans I get every two months, but I've finally learned how to deal with them. 
1)  Our local procedure requires me to drink the barium contrast (either the night before or in the morning, depending on the extent of the scan).  At first I took it quickly to get it down, then spent considerable time sitting on the "commode"! Now I relax in my Lazy-Boy, pretend the barium contrast is a cocktail and just sip it while reading a book.  No problem doing it that way.
2)  The lab technicians have always had trouble inserting the large needle in my arm for the dye at the time of the scan.  My veins would roll and they'd have trouble "chasing them down".  So I began putting Emla cream (lidocaine/prilocaine) on the injection spot about 2 hours ahead of time and now feel absolutely nothing when they insert the needle.  I no longer "fear the needle" -- since I can't feel it!

Chemo Infiltration:  A final note:  over 1 1/2 years ago nearly 1/2 hours worth of Oxaliplatin (quarter of the bag) was infiltrated into my arm (not in the vein where it was supposed to go) by mistake.  That caused pretty substantial pain for a number of months, and lots of scar tissue formed in the forearm, but I still have full use of the arm.  If anyone else has had this unlucky experience I'd be glad exchange thoughts with them.  I used a lidocaine patch to help sleep at night.

I keep very busy with cars, local history research, genealogy (I now have over 9,000 entries on the Web), photography (over 4,000 Web photos), and try to keep up with the grandkids.

I apologize for "repeating" much of my "Introduction" under "Experiences", but hope my experiences will give encouragement to others.  In general I feel everyone should never loose the faith.  Always stay as positive as possible.  Be active in other pursuits, and realize each new day brings new treatments not previously available.

Jerry Daniels
Platteville, WI
Jerry

Re: Experiences From March 2001

This is an update concerning the most recent treatment I had in November 2006 with SIRS Spheres.

As mentioned in the original post on this topic: "In November 2006, I had SIR Spheres (radioactive beads --  a new procedure not available two years earlier) inserted in the liver through a cather.   In December, I had a CT scan which showed the growth had stabilized -- which was the best the doctors' had hoped for.  My next CT scan is scheduled for Feb. 2007."

I met with the oncologist two days ago to discuss the results of the February CT scan.  He was very pleased to see that the spots had still stabilized, and in fact may have shrunk slightly.  He says they have not experienced very rapid change with this new procedure, so they did not expect much shrinkage this soon after treatment and was pleased that the growth had not increased.

My next CT scan is scheduled for April.

I don't think I've had a lot of side effects from this treatment -- maybe fatigue and still not a large appetite -- although I have maintained my weight.  The fatigue continues to lessen and the appetite is getting better. 

The reason I qualify my side effects, is because I've been on so many chemos in the past, and I feel the effects of those are cumulative (for instance the tips of my finger still tingle -- but I'm used to that), so I'm not real sure what side effect is from what treatment.  However I definitely feel the side effects of the beads are no where near as severe as side effects of other chemos.

If you are interested, here is the Web address of the treatment: 

http://www.sirtex.com/usa/for_patients

I might mention that preparation for the treatment is rather extensive.  A month before the actual beads are implanted, they do sort of a dry run to map out all the arteries going into and out of the liver.  My "mapping" took twice as long (about 4 hours) as most people.  The surgeon said most people have arteries like super highways, but mine were like narrow and twisting country roads.  (It is true we live in a small town in a rural area of SW Wisconsin -- although they did put a super highway past our town last year -- but I guess it missed my veins!)

The surgeon also said it was important the beads did not go out of the liver into other organs, so for those arteries, they inserted tiny springs which look like slinkies.  Remember them.  So now I go head over heals when going down the stairs!

Best of luck to everyone, and never loose hope and faith.

Jerry

Re: Experiences From March 2001

Jerry

I was so pleased to read the great news about your latest scan.  I read the blurb about the treatment and see that the beads continue to work for 14 days.  Does this mean that you have regular courses of treatment?  The only treatment centres in Europe seem to be in Germany.  Do you know if they are expecting to increase the treatment centres, particularly into the UK?

All the very best

Ron

Re: Experiences From March 2001

Ron,

They only give one treatment for each half of the liver, and since they took half of my liver out six years ago, I won't have a second treatment.

I'm not real sure about this, but I think the 14 days is the period the radiation is pretty heavy and I have to stay a distance away from my friends.

The oncologist said the results come very slowly on this treatment, and he was pleased which what he's seen so far.

I don't know if they are available in Europe or in Scotland.  You might want to contact the Web site or your oncologist to find out.  I have no idea under what conditions an oncologist would recommend this treatment, either.

I was told the timing of getting the beads was critical since they came from Australia.  I mentioned putting "slinkies" in the arteries to keep the beads from going out of the liver -- maybe they could have used miniature kangroos from Australia instead.

Thanks for the reply, be positive, and never loose hope -- or your great Scottish humour.

Jerry