jerry-d
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The radiologist said they use little blocking devices which look like slinkies (which is why I go head over heels when I go down steps!)
All whimsical statements aside, I assume the slinkies worked. I had the SIRS Spheres one year ago and the tumors are still stable.
Jeff,
Sorry to hear your latest news — but I know you’ll keep persevering. Keep positive as you always do, and things will get sorted out OK.
Jerry Daniels
Ron,
I sorry to hear that the tumors have shown up again — but that seems to happen to most of us, and dealing with it is very stressful. Keep positive, and don’t loose your Scottish humour.
When my tumors seem to have gone away, only to reappear in a few months more or less, the doctors say also that they were probably there all along but too small to be seen on a scan. Personally I would opt for treatment while they are small. Even though your tumors may be slow growing, I think treating larger spots or more of them would be difficult. The chemos/procedures, following liver resection, which worked for me were: (Mostly clinical trials) Tarceva, Oxaliplatin with capecitabine , chryoablation, and, last Nov., SIRS Spheres (Y-90 beads) which still have the tumors stabilized. Unfortunately some bad effects on the liver of six years of treatments are now showing liver damage. I met with the oncologist today and he is setting up an appointment next week with a stomach specialist next week to see if the liver damage can be slowed down or reversed.
In general your comments on the U.S. vs U.K. medical plans agree with my impressions. As I may have told you, our daughter lives in Windsor, UK, and has had similar experiences to yours, and I have had a terrible time with Medicare in the U.S., although my secondary insurance has been quite good — but I think I just lucked out to get a good carrier. Actually the carrier is in the state of Wisconsin, and there have been other advantages to Wisconsin medical benefits which other states don’t provide. Medicare representives, especially, have been very unhelpful, and confusing. At one point, one Medicare representative told me that colangiocarcinoma was not an approved illness for Medicare to cover. (I felt it was illegal to have colangiocarcinoma in the U.S.!)
Best of luck on whatever you decide, and it was nice to hear from you again.
Regards,
Jerry Daniels
I wish I could confidently tell you who paid for what for the SIRS Spheres treatment (Y90) treatment I had last November. Before I go into the payment, I should mention that my latest scan last week showed that the tumors had not gotten any larger since the Y90 treatment in November 2006.
As for the payments, I am on Medicare as the Primary and have Dean Health Insurance (Wisconsin company) for the secondary insurance. I had the preparation for the procedure in Oct. 2006 at a cost of about $10,000 and the actual treatment in Nov. — the initial cost of over $64,000. There might be other costs, but I didn’t see any after quick scan of my very thick insurance records. Medicare turned down many costs for the October treatment, but I think, after appeals from the doctors, they paid most of the costs. I’m not sure how much Medicare paid and how much Dean Insurance paid. To add to my confusion, the first bill for the November procedure was $60,440 of which Medicare paid $21,731 in Feb. I have not received any bills on the procedure so far, so I assume, maybe Dean Insurance paid the rest, but I don’t know for sure. However by November it seems I should have hears one way or another. Dean has previously paid for chemo and treatments which Medicare has turned down.
Related also is that in October of each year I have the option to choose a different secondary insurance. I was considering changing from Dean Insurance, which requires referrals, to a Wis. Physicians Service Insurance which was formerly Blue Cross. This insurance did not require a referral. Fortunately I did not switch carriers and later was told WPS only covered textra costs of the treatments/chemos approved by Medicare.
This whole post is to indicate that I think the Dean Insurance did cover costs not covered by Medicare for the Y-90 treatment — but it is all very confusing as you have found out. Even my oncologist has trouble interpreting Medicare for his mother.
Best of luck with your insurance, and more importantly with your father’s treatment for CC.
Maryanne,
I just saw this post from you concerning Medicare. Since that post is so old you may not see my reply, or you may have see a post from me on the Experiences Discussion Board yesterday.
In any event, here is a copy of what I posted yesterday pertaining to Medicare:
“One other thing someone mentioned — clinical trials. I’ve been on many clinical trials throughout the past six years. Some worked, some didn’t work. But, I’m certain the ones that did work have kept me around. As it turns out I don’t have lots of choices other than most trials because I’m on Medicare and the last time I checked they only approved three drugs for CC. Additionally some of the major medical gap insurances will only cover what Medicare approved. A chilling example is one drug was so successful that I was taken off the trial. But, not unexpectedly, the tumors came back in about three months. But I was ineligible for a trail since I’d been on one, which is normal protocol. Medicare, however, declared the drug, approved for other cancers, could not be approved for me even though it had been working. It was an “Off Label” drug in their nomenclature, so I either had to persuade my secondary insurance to pay for the treatmentsl, or negotiate with the drug company, or pay them myself — which, if I took it for a year, would have cost me $200,00!. Fortunately the insurance ran it past all their medical staff and decided to pay the cost. This experience also showed me the “retail” vs. “wholesale” price of the drug. It would have cost me $12,000 per treatment, but the hospital rate to them was $3,400. “
One of the main things we learned about Medicare is how cold-hearted they are and also it is important to get secondary insurance which covers more diseases than Medicare. Some only cover what Medicare covers but pays the additional costs beyond Medicare’s allowances. At least that is my understanding.
Good luck and keep up the faith.
Jerry D.
Carol,
I can’t add much to all the posts in support of you and your husband. Certainly they give excellent advice. I too have been through and continue to go through all the challenges you and others have mentioned (I always use the word “challanging” because it is more positive than nasty words used for this challenging condition).
Fortunately my family (wife, four kids and nine grandkids) have been very supportive, but not in an overly emotional way. They avoid letting their emotions get the best of them and they try not to let me get that way also.
I’ve also been fortunate to have a wide range of hobbies which can keep my mind occupied in a positive way. One of those hobbies was all consuming for the first two years — so that I told the oncologist he’d just have to hold up on any bad prognosis he had since my wife could deal with the hobby — which in my case was putting back together a car I was restoring and which was still in 257 jiffy bags with parts scattered all over the house. I knew my wife couldn’t get the car back together so I just concentrated on that for two years, and worked through the surgery and many treatments while inhaling lacquer thinner at the body shop. (Maybe it was the lacquer thinner that scared the tumor growth!)
But, the main think I keep thinking as I face the ever-changing challenges, is that this my life to live the way I want. And I think: do I want to spend the rest of my remaining, days, months or years feeling sorry for my self? I quickly decided the answer was No. Life is too short and I’ve still got too many things to do, so I better get on with it and stop moping about the house. Of course that is easier said than done — especially after a treatments that don’t work or have stopped working.
One other thing someone mentioned — clinical trials. I’ve been on many clinical trials throughout the past six years. Some worked, some didn’t work. But, I’m certain the ones that did work have kept me around. As it turns out I don’t have lots of choices other than most trials because I’m on Medicare and the last time I checked they only approved three drugs for CC. Additionally some of the major medical gap insurances will only cover what Medicare approved. A chilling example is one drug was so successful that I was taken off the trial. But, not unexpectedly, the tumors came back in about three months. But I was ineligible for a trail since I’d been on one, which is normal protocol. Medicare, however, declared the drug, approved for other cancers, could not be approved for me even though it had been working. It was an “Off Label” drug in their nomenclature, so I either had to persuade my secondary insurance to pay for the treatmentsl, or negotiate with the drug company, or pay them myself — which, if I took it for a year, would have cost me $200,00!. Fortunately the insurance ran it past all their medical staff and decided to pay the cost. This experience also showed me the “retail” vs. “wholesale” price of the drug. It would have cost me $12,000 per treatment, but the hospital rate to them was $3,400. I only mention this because in my case, being on Medicare, introduced yet another challenge!
I’m glad to hear your husband is in better spirits now. Keeping a positive attitude is extremely important. Again, easy to say, hard to do, but just as necessary, I think, as all the treatments. Again, do I want to spend the rest of my live being sad? No, I think it is much more fun to be happy and positive. Even when I fake it, I try to convince myself to be positive.
Best of luck, stay positive, and stay busy.
Jerry
Nicole
I had SIR-Spheres (SIRT Y-90) inserted last November. Previous to that (in May 2001) after being diagnosed with CC, I had half the liver removed to get rid of the 10 cm mass. In a year tumors showed up in the remaining part of the liver. Over the years I’ve had many chemo clinical trials — some worked for a while, some did not work at all, plus chryoablation which partially worked. Last fall, running out of options, they tried SIR-Spheres. So far (after ten months) the tumors have not gotten any larger, but are still there which they thought would be the case, but are pleased that it stabilized.
At first I felt pretty good, but then began getting very tired, having little appetite, and stomach aches — which I attribute to stress. Lately, though I’m feeling better. I also attribute my aches, pains, fatigue to all the chemo and procedures over the years as well as too many birthdays, since I’m now 73.
[I am copying this from an earlier post on this site. Since then I’m slowly getting my energy
back, but I seem to have other complication, probably not related to the cancer, and the meds for that really wear me out. We’re still trying to figure out how to address this new problem.]By the way, this was not done on a clinical trial. Apparently the treatment has been approved. I believe it comes from Australia.
SIR Spheres so far have worked well, though, but I’ll find out more on Monday during my oncologist appointment. I hope you have the same success for non-operative cancer in the liver.
My experience with Tarveva: Tarceva was the first chemo I went on about a year after they took half my liver out. It was a still a trial drug then (2002), known as OSI 774. The results were almost immediate — that is, the first scan showed some spots gone and others reduced. The side effects, compared to what I’ve been on since were very mild. The rash was not a real problem — didn’t itch — just made me look like I had a pox of some sort. But, for some reason I had a number of in grown toe-nails — strange! I also got dry eyes at the time and still have that. I was able to continue working daily on restoring a car. Maybe the environment was good (sort of a dark shop with lacquer thinner prominent). I had to be very careful in the sun — got sunburned easily, and more rash in the son. I was on it for about 1 1/2 years until the spots began getting larger. That was in 2002 – 2003, and I’m not aware of permanent damage from it, although I’ve been on a number of other treatments since then and I have no idea where some of my current problems came from — probably the aggregate of everything.
After I stopped Tarceva, I had chryoablation to feeze some spots, then went on Gemzar which didn’t work at all except for producing harsher side effects. I then was on Oxaliplatin with Xelodia which worked for over a year and a half. Most recently (last November) I had SIRS Spears inserted. I’ll find out in a week if the beads are still keeping things stable.
You also mention Tarceva’s cost. Since it was still in the trial stage, I don’t know the cost of it, but later found the cost to me for Oxaliplatin if I had to pay. That cost, per treatment, retailed at about $12,000. Treatments could be from two weeks to 7 weeks apart for me, depending on my platelet count.
I had SIR-Spheres inserted last November. Previous to that (in May 2001) after being diagnosed with CC, I had half the liver removed to get rid of the 10 cm mass. In a year tumors showed up in the remaining part of the liver. Over the years I’ve had many chemo clinical trials — some worked for a while, some did not work at all, plus chryoablation which partially worked. Last fall, running out of options, they tried SIR-Spheres. So far (after ten months) the tumors have not gotten any larger, but are still there.
At first I felt pretty good, but then began getting very tired, having little appetite, and stomach aches — which I attribute to stress. Lately, though I’m feeling better. My next scan will be in a month. I also attribute my aches, pains, fatigue to all the chemo and procedures over the years and too many birthdays, since I’m now 73.
SIR Spheres so far have worked well, though. I hope other have the same success for non-operative cancer in the liver.
Jerry
Stomach ache! Gads that’s what got me to see the Doctor in Mar. 2001. They didn’t find the problem causing the stomach ache, but they did see a 8-10 cm mass in my liver — CC.
My stomach ache is still there, gets even worse some of the time (I think it is stress related, although eating sometimes causes problems, sometimes, not). They said the pain was not, is not, related to the CC. Of course after 6 years of surgeries, chemo trials and radiation, I think that combination may have also contributed to the pain.
What ever it is, they can’t seem to find the problem — other than to say I’m like an old car with well over 200,00 miles on it.
I hope your dad can try to ignore it as best he can (but it’s really hard to do when it keeps you awake nights and you feel like crap all day).
Of course everyone is different — this is just what I’ve experienced, but I could have done without the stomach ache, but then that is what got me scanned in the first place, so I guess every ache has it’s positive side.
Jerry
My understanding about a liver transplant for CC (and I can only speak about the kind of CC I have) is that CC is a bile duct cancer, and not primary to the liver — where it shows up and where it metastasized back to after my liver resection (one side removed) in May 2001. I’ve been told if I had a liver transplant, the cancer could easily spread back to the new liver from the bile ducts.
Again, this is only my non-professional opinion and possibly only for my situation — but it made sense to me.
I was diagnosed with cholangiocarcinoma in Mar. 2001. The first step was to remove half my liver, but within a year the cancer (from the bile ducts) spread to the remaining half. I then went on many different clinical chemo trials, some of which worked, some which did not work. I also had chryoablation a couple years ago which got rid of several spots except for those in critical areas which could not be treated. I then when on more chemo — some worked for awhile (oxlyaplatin and capecitabine worked for 1 1/2 years), then more chemo which did not work.
Last November, after the preliminary prepping, mapping and inserting of metal slinkies in the veins in October, I had the Sirs Spheres radiation beads inserted in the liver.
Since then I’ve had several scans. The first showed small shrinkage, the rest showed a stable condition. The most recent scan (last week), 8 months after treatment, still showed my condition to be stable.
I should mention that I only had one treatment, because I’m told the protcol is for a single treatment for each lobe of the liver — and I only have the one lobe of course.
I also want to say how lucky I feel to live in Wisconsin and be relatively close to the Univ. of Wisconsin Comprehensive Cancer Center — which has kept me alive and kicking for over 6 years.
Since CC is so different in everyone, I always hesitate to mention my experiences. I was diagnosed with CC in March 2001. I’ve had several surgical procedures, and have been on quite a few clinical chemo trials.
My understanding is that the discomfort I’ve had over the years is not caused by the cancer, which still seems contained in the liver (It came from the bile duct.), but is caused by the surgeries and chemo treatments over the years — some which worked and some which did not work.
Thus, if they had not accidentally seen a mass on my liver during an ultra sound to see if I had gall stones (which I didn’t have), the CC would not have been discovered.
My “almost” up to date experiences (more than you probably want to read) are at this link on this marvelous site: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=341
Good luck, never give up hope, and stay busy.
Jerry Daniels
Platteville, WI
