jerry-d

Embolization was initially suggested twice for me. Unfortunately, upon further study and consultation with all the medical people involved it was found out it would not work at that time for me because in one case the tumors were too close to a vital vein and in the other case, a closer exam of the scan showed too many spots to treat that way.

But my understanding is that it is minimally invasive, it requires very little surgery (just a tiny opening in the groin which is not even stitched — more like a little cut which heals very fast), and my understanding it is targeted.

I was told the side-effects would be minimal — but again I was not able to have it done.

Best of luck and always keep up hope.

All I can say is to never give up hope. Half my liver was taken out in March 2001. At that time the surgeon said my gall bladder was fine but it was in the way, so he took it out, too. I told him I was glad my heart wasn’t in the way.

After a year spots started showing up. Since then I’ve been on a number of chemos (mostly clinical trials) and a couple surgical procedures — the latest which is so far proving successful.

Because CC is so unpredictable, the oncologist waited for three years before he felt mine was also slow growing and might continue to be that way. Of course, I’m aware things can change fast, but so far the treatments have been effective for awhile. Oxaliplatin and Xeloda at an extremely high initial dose under a carefully monitored clinical trail did work for me for over a year and a half. But I had other chemos which did not work for me but which did work for others.

I just updated the results of my latest treatment in the Experiences Forum.

Good luck, never give up hope, and be aware that new treatments continually become available. In my case having a good sense of humor also helps, I think.

Jerry D.
Platteville, Wisconsin

Kate G

I fully understand your comparisons to the medical system we have and the one in Great Britain. Our youngest daughter, husband and their 7 months old son live in Windsor, about 9 blocks from the castle. Your system has a lot of good things going for it.

Jerry

I’ll add some of my experiences to this thread. I have entered some of this information on other posts in this and other Forums on this great site, so I apologize if you have already seen this.

I have had quite a bit of “experience” with the Oxaliplatin and oral Xeloda combination since I was on a clinical trial with that combination from May 2004 though October 2005 (16 months) after which the trial was stopped because the spots were not measurable, but also because my platelet count did not get up fast enough for the trial treatment intervals. Spots began showing up again in Feb 2006, and I went back on that treatment, off study, for two months, but that chemo combination no longer worked for me.

Jeff mentioned the amount of Xleodia he was given at first. In comparison I was started on a much higher dose, which was reduced 20% the following month, then reduced another 20% several months later, with the final 20% reduction shortly before the end of the clinical trial in Oct. 2005. When I resumed the chemo in 2006 the Xelodia was at the final reduction rate, which was: 36 (500mg) tablets (total 180,000 mg) taken every 8 hours during a two and half day period following the Oxaliplatin chemo.

Yes I was dealt lots of Royal Flush hands as Jeff calls it. I was hospitalized once to get my fluids up. Afterwards, I took immodium on a regular basis every day (with the same regularity as the diaherra). I also drank a lot of Gatoraid or some cheaper drink with lots of electrolytes in it. Over the ensuing months I got used to that regimen.

As I mentioned my platelets would get very low and take a few weeks to get back to the trial threshold of 75 for the next treatment. It took 7 weeks at the end for the platelets to get high enough. My white blood count was OK (although it had gone too low during a previous treatment with Gemzar — a drug which did not work at all for me.)

Yes my appetite was down, and is still recovering very slowly, and of course I had the neuropathy in my extremities (especially my fingers). Trouble buttoning my shirt, etc. That too is still there (my last treatment was Oct 2005), but it’s not much of a problem unless I think about it. There were many other side effects too, of course.

One final caution for those on Medicare. While I was on the study the drugs were paid by the study. But when I resumed Oxaliplatin “off study” in Mar. 2006, Medicare would not pay for that drug. They said it was “off label” and not approved for CC (bile duct cancer in the liver), although it was approved for colon cancer in the liver. They said the decision was not appealable. My only options were to convince my secondary insurance to pay, negotiate with the drug company, or pay the bill myself. It was then I found the patient/retail cost of Oxaliplatin for just a single treatment was $12,000. I later found the hospital “only” paid $3,400 per treatment. (Pretty big mark-up). I was fortunate because my HMO agree to pay that cost per treatment. I also found I was fortunate, not only because the HMO paid, but because I was on a secondary insurance which would pay. Earlier in the year I had the opportunity to get out of the HMO which required referrals and go to a secondary insurance not requiring referals. Fortunately I did not switch insurance companies. Had I done so, I found the reputable company I was thinking of switching to only paid for drugs approved by Medicare, and since Medicare did not approve of this in the first place, the secondary insurance would not have paid either. In that event we would have to work out something with the drug company or I would have had to pay $12,000 per treatment. Again I apologize if you have seen my post on this issue elsewhere, but it was a very stressful “learning experience” during a very stressful time. It is so hard for senior citizens to pick insurance programs when they don’t know what medicines/chemos they’ll be on.

Jeff, Lynne, and all the rest of you who are on this and other treatments — I want to wish you the very best. Never give up hope. I’ve also mentioned that new treatments become available continually. Most of those treatments which have worked for a period of time for me were not available — even in trials when I was first diagnosed with CC in March 2001.

Jerry

Jeff G asked about experiences with Oxaliplatin/Xeloda (capacitabine). I was on that combination through a clinical trial at the Univ. Wis. Comprehensive Cancer Center for 1 years, 5 months (May 2004 – Nov 2005), then for two months (April – May 2006).

As most people have mentioned the most common side effect is the cold induced neurophathy — tingling extremities and very sensitive to cold for (in my case) up to 5 to 7 days following treatment. Breathing cold air, trying to swallow (hot or cold) is a little bit of a challenge, but I became used to these things, and was able to deal with them. For instance I used gloves when typing on the computer until my fingers became less sensitive after each treatment. It seemed to be standard practice to give steriods at time of treatment to prevent nausea, but then for the next couple days I was climbing the walls and back down the other side. When the steroids wore off, I slept almost continuously for a day or so. My appetite was not ggod, partially because the neurophathy gave me the feeling of a lump in my throat, which made it hard to swallow. (Of course there was no throat lump, just as car door handles were not made of ice!) I was on the program long enough that the drug company gave me mittens, a blanket, a scarf and a carrying bag with the name Oxaliplatin on it. I had a number of other side effects such as my finger nails getting quite soft. In fact they got so soft I told the doctor I couldn’t even pick my nose — now that is soft! The one constant side effect was that my platelets would get lower than the thresh-hold for the study, which was 75. Although the study people weren’t happy about that, I thought it was great because treatments were postponed until the platelets were over 75. The final trial treatment was 7 weeks apart (and the treatment protocol was supposed to be every couple weeks!). I was then taken off the trial for that reason, but also because the spots had become so small and fragmented they could not even be measured. I was off the study from early November until February when the spots started appearing again. I was not able to get back on the trial, so I received the treatment “off study” for two months, but unfortunately it was no longer effective.

I’ll briefly mention one other thing. At one point (before I had an infusa port), apparently the injection needle went through the vein and infused a half hour (quarter bag) of oxaliplatin into my arm instead of in the vein. If anyone is interested in that, unfortunate mistake, I can tell more about it.

Everyone reacts differently to chemos, but these are some of the experiences I had with over a year and a half of treatment with Oxaliplatin/Xelodia. I was pleased with the results for most of the time, and was able to recover from the most unpleasant side effects after about a week following each treatment. The chemo eventually didn’t work– but that was not surprising, and we’ll just have to find a new one which will work.

Good luck for those of you on this combination. Keep positive and keep busy so you don’t dwell on the treatments.

Jerry Daniels
Platteville, WI

In my case, about a year after the liver resection, tumors metastized back to the remaining half of the liver, and, at that time, I was told no more operations could be done. So in subsequent years I’ve been on 5 clinical trial chemo programs, some which worked for awhile and some which did not work, and 2 surgical procedures — with the most recent being insertion (in November) through a catheter of radiation beads into the liver — which stablized tumor growth as seen in a CT scan in December.

The most encouraging thing is that during the time I’ve had CC new treatments have continually become available.

Jeff G mentions stress and anxiety — which is my middle name — long before I had CC. So I deal with that the best I can, but I guess it’s just my nature. I’m too impatient to sit around a lot, and I am able to get involved in new and exciting projects which are very stressful but frequently in a positive way, and they also keep my mind off my medical concerns.

Good luck and keep a positive attitude.

Jerry Daniels
Platteville, WI

My experience with scan frequency was the same as Joyce’s husband. Following my liver resection in 2001 when margins were clear and no evidence of spots, I got CT scans every three months, but the following year (2002), when it metatisized to the remaining half of the liver (and apparently was considered at Stage IV), I’ve received CT scans every two months during which I’ve been on several clinical chemo studies and had a couple surgical procedures.