September 30, 2007 at 1:13 pm #14017peterMember
I use a decision making technique taught to me by a friend as I face many of these difficult decisions that do not have clear answers. He dubs the technique his ‘least regrets’ process. It’s easier said then done.
Simply put you do your best to force your mind to follow possible paths in your life that may be created by a particular decision. Then, even harder, try to imagine how you might feel given the possible outcome for a particular course a path may take.
ie: If I choose to take chemo:
One question is how it may effect my quality of life. If the chemo seems to work and you do well on it that path and ‘least regrets’ option is easy.
If you don’t do chemo and continue cancer free that one is REALLY easy.
What if the chemo works but you experience difficult side effects. Would you regret doing it?
What if the chemo doesn’t work and you experience difficult side effects. Would you regret doing it?
What if you don’t try the chemo and cancer returns in force. Would you regret not doing it?
As I said it is difficult, at least for me, to get my mind to stay with following the different courses through and then trying to imagine how I would feel.
And you can’t expect a black or white answer to come to you. This just isn’t the nature of what we face. I have found the process useful enough for me that I continue to use it, but never look forward to it.
-PeterSeptember 29, 2007 at 11:57 pm #14016charles-woodmanParticipant
I had cholangiocarcinoma of the liver; a primary tumor; resected. Doctors told me I was cancer free. But the option for chemo is one I have to make now. My thinking was similar to what I just read from you. “If the cancer comes back, would I blame myself?” Thanks for putting it into words.
CharlieMay 13, 2007 at 10:16 pm #14015andymParticipant
In october last year I had a whipples operation to remove my tumor. Doc’s told me I am more or less qured. I had the option of chemo and took it more for peace of mind. It started in December (the week before Christmas) and lasts 6 months. It really took it out of me, I was ready to return to work if i was not getting the Chemo but it really knocked me for 6 it is hard going but probably worth it in the long term. The docs suggested another 3 – 6 months to fully recover.
I just though about what if the cancer comes back and I had refused the chemo would I blame myself? I my case I really wanted the treatment even though the Docters were more than happy if I decided not to go with it.
hope this helps – feel free to contact me
AndrewMarch 27, 2006 at 6:21 pm #14007caroline-stouferParticipant
I am in Phase II of the clinical trial to test sorafenib on cc and other liver related cancers. My oncologist told me that sorafenib works 78% of the time in arresting renal (kidney) cancer. He has a patient who is taking it for tumors in his kidney and it is working beautifully. Sorafenib has already been FDA approved and is being used for renal cancer, so the 78% statistic is a quote from my oncologist for renal cancer, but still it gives me hope that it will translate to tumors in the liver.
You can go to clinicaltrials.gov to get more info on the sorafenib trial which is being offered through Southwest Oncology Group SWOG. (You’ll need to search by cholangiocarcinoma, and about 9 – 11 trials will come up – it should be one on that list.) My contact from the trial told me that I was the fourteenth person to start the drug in this phase. They will take 25 people and if anyone shows positive results, they will test another 25. I don’t anything about the Phase I portion of this trial, but I’m sure you can contact SWOG and ask questions.
“Hairballs” are my nickname for tumors and they grew in the 3 months since my surgery which is pretty scary. Hopefully, the sorafenib is in my liver giving them hell!
-CarolineMarch 24, 2006 at 6:30 pm #14014
Good luck with the Sorafenib, I do hope that it works. The 78% success rate quoted in your other post is very impressive, do you have any details regarding the trial from which that figure derived ? – is there any info in the public domain ? The trial which you are now on – is that a Phase II or Phase III trial ? Anyway please keep us informed about your progress, it sounds like a very interesting drug. Pleae also let us know about any side effects.
By the way, what are “hairballs” (sorry to ask a dumb question) ? You say that these weren’t detectable before/during surgery, does that mean they grew during the 3 months after resection ?
GeoffMarch 23, 2006 at 4:15 pm #14013caroline-stouferParticipant
I was resected on November 30, 2005. Initially, my surgeon and oncologist both told me I’d have chemo after the surgery; however, when I saw my oncologist for my first post-surgery check-up, he recommended against it. This enabled me to go on a working vacation with my husband to Tucson, Arizona which was wonderful for me both mentally and physically.
I think that my oncologist advised against chemo because the statistics don’t show that it is that effective, and I think he wanted to steer me toward a clinical trial, which I wouldn’t be able to participate in if I’d had chemo.
Unfortunately, at my scan three months after surgery, I do have three or four little “hairballs” back in my liver. We were all shocked because I felt great, looked great, and these little boogers weren’t even detectable before or during surgery.
I did get in the clinical trial and just started on Sorafenib two days ago. It works very well in renal cancer. Hans, a member of this site was also on it for 8 weeks, but his tumors were still growing and he has gone onto chemo. It is an oral medication, and so far, I’m not having any side effects, but it’s only been two days.
My oncologist feels that my tumors are small enough at this point, that there’s time to try this drug. I can go to chemo later on as a back-up plan.
Like you, I feel fortunate that I was able to have my liver resected.
If you think that you may want to participate in a clinical trial, then you may not want to have chemo right away.
Good luck to you,
Caroline StouferMarch 22, 2006 at 12:06 pm #14012dette1957Participant
My chemo started 6 weeks after the resection and went on for 7 months. While the chemo made me weak and anemic, I worked full time through 4 months of it. I had to leave work for a 3 months to continue the treatments and recover from the effects of it.
As far as the weight goes, I had a unique situation. Shortly before the CC, I had just lost 125 pounds, unrelated to the CC. I did gain back 10 of those pounds and have maintained that since.
DetteMarch 21, 2006 at 6:41 pm #14011
Yes I’d already seen your History thread and again I take great encouragement to hear from someone like you who is in the 50% who survive beyond the 1-2 year median. I note that you didn’t have chemotherapy, as you say it’s a very personal decision.
As an engineer I’m used to making decisions based upon the best set of facts I can get my hands on, recognising that I’ll never have the complete story. So ideally I’d like to make my decision based upon whatever success-rate statistics are available. Unfortunately is appears that very little is available other than for non-resectable tumours.
GeoffMarch 21, 2006 at 6:21 pm #14010peterMember
See the ‘My History’ in my name (Peter) in this section.
I’m curretnly 2 yrs 6 months post resection.
There are threads on this site and others with debate and different experiences on the chemo/no chemo choice.
-PeterMarch 21, 2006 at 5:52 pm #14009
Good to hear from someone who is maintaing a full and active life after resection. It’s only just in the last month or so that my own mobility and feeling of well-being has seriously improved. Could I ask:
(1) how long after surgery did your chemo start ?
(2) do you feel that the chemo hindered/delayed your return to a full and active life?
(3) has your weight returned to normal yet and if so how long did that take ?
Best wishes for continued freedom from this disease.
Geoff (whose next CT scan is in 4 weeks)March 21, 2006 at 5:36 pm #14008dette1957Participant
I was resected in Dec 2003. I was on Gemcitibine and Capcitibine for 7 months post surgery. I go for CT scans every 3 months. So far, they have all been clean and I maintain a full and active life. My docs also said that the chemo was not proven, but I opted to take it.March 21, 2006 at 2:33 pm #78
Most of the posts on here are, inevitably, about patients with non-resectable tumours. I guess I am one of the lucky ones who, despite my tumour being at (I think) Stage IIA, had a resection by a very skilled surgeon (Prof Lodge in Leeds). This was 5 months ago and of course I’m well aware that there is a significant risk that my cancer will re-appear in due course, the median survival rate is quoted as 1-2 years.
So far at least I have not had any chemotherapy. The surgeon said it was unnecessary and an oncologist told me that, whilst there is no statistical basis for asssessing the effectiveness of post-resection chemo in prolonging life expectancy (since the trials such as ABC02 with Gemcytabine/Cysplatin were limited to non-resected tumour patients) his estimate of effectiveness post-resection would be 10% or less (compared with about 25% effectiveness in shrinking unresected tumours).
Does anyone know of any data related to post-resection effectiveness, or even personal exreience ?
- You must be logged in to reply to this topic.