Adjuvant therapy
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Hiya all. I had a whipple last April, at St. James Hospital in Leeds, UK. There was involvment with one lymph node.
My surgeon Mr Menon suggested adjuvant chemotherapy to me, and referred me back to my local hospital in York for the chemo. I had six months of 5-FU adjuvant chemotherapy, which I tolerated very well. have gained all the weight I lost, and feel very well. Had some blood tests taken 2 weeks ago, and got the results back last week. All within normal range.
I would definitely push for adjuvant chemo if I was you. Even if there was no lymph node involvment, my surgeon said he would offer it as a matter of course. I would take anything that will help zap those stray cancer cells.
Good luck, and wishing you good health. Sylvia xx
Maggie:
Although it is true that many times the CC can come back, his chances with Chemo may have been better for a longer time in between tumors if he’d had the chemo after his left liver resection. He had Intraheptic CC, the original tumor was in the left side of the liver about 2 1/2 CM above the buifaction of the main bile duct where it separates and branches into the left and right side of the liver. His tumor was in the left side, and they were able to get clear margins. His new docs figure that if he’d had chemo the new tumor would have possibly not developed so quickly.
Of course with all the research that I have done on this cancer, I have learned that there is a good possibility that it may have re-occured and that it was just a matter of time. Research does show that the only cure is a resection and that for those who do experience a re-occurance of a tumor, their chances are even less than one who does not experience a re-occurance.
Given that, my husband was one of his surgeons success cases. They found the tumor quickly, within three months time. In January of 2008, his liver functions tests were completely normal, in March 2008 his Alk Phosphate was 10 times elevated…and three weeks later they found the CC. For 18 months we lived in a fools paradise as all his doctors told him that he was cancer free. Now to make matters worse, the surgeon reused, (Yes I said reused) the original stent that had been in his liver at the cancerous site for three months. When she cut away the diseased left half of the liver, she took that stent out of the left half of the liver and reinserted it into the rt remaining biliary tree. Wonder of wonders, that is where the new tumor appeared.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Dear Margaret,
May I ask which type of CC did your husband have? Was it Klastskin, intraheptic or distal CC? I am surprised to find that your oncologists said that if your husband had received chemo/radiation, his CC would not come back because we know that adjuvant therapy may or may not prevent recurrence. Some of the people on this site have had adjuvant therapy but their CC still came back. Isn’t this true?
Maggie
Maggie:
In my husband Tom’s case, he is now 63 and CC was dectected when he was 61, and he has some other major health concerns. He went through a liver resection in June 2008. His veteran doc’s said that chemo/radiation was not necessary because they had clear margins.
For 18 months we lived with the thought that he was cancer free. Then in Nov 2009 the day after Thanksgiving, he started to turn yellow. He had a new 1.5 cm tumor in the remaining rt biliary tree, which is inoperable. We sought 2nd, 3rd and 4th opinoins. Although all opinoins agreed that the tumor was inoperable, three of the 4 agreed with radiation/chemo as a way to combat the new tumor. His veteran oncologist gave him 6 months.
Tom underwent 28 rounds of radiation and has been through 4 rounds of chemo. He is officially in remission as I speak. His new civilian oncologist and radiation doc’s are now saying that if he’d had chemo after his successful resection he would not be in the position he is in today. Did I mention that we are in the 9th month of life since the veteran’s oncologist gave him that dire prediction of 6 months? Just goes to show that no one has an expiration date stamped on their butt!!!!
If you or your mom believe that chemo (as soon as she is recovered enough from the resection) then by all means you should insist on some form of chemo. Tom was on Xleoda which he tolerated very well for the most part. It did make him tired, but he never got sick and did not lose any hair! He said he spent 63 years growing that hair and he was pretty partial to it.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Maggie…I admire your persistency in consulting with specialists in this field in order to make an informed decision. You have gathered much information, assimilated it, discussed it with other family members, and based on all of the above you are making an educated decision. Congratulations.
All my best wishes are coming your way,
MarionDear all,
We have finally consulted 6 doctors about adjuvant chemo/radiation therapy for my mom who had her surgery 5 weeks ago. Here are the results:
Mom’s hepatobiliary surgeon: no adjuvant therapy because there is no evidence that it is effective in lowering the chance of recurrence and mom’s liver is too weak now to withstand chemo/radiation
Another hepatobiliary surgeon: yes for chemo but no for radiation because this type of cancer will come back even if the resection is successful. If receiving chemo, should wait for liver function to improve.
Another surgeon: no because mom is old and may not do well with chemo and radiation
Canadian oncologist: no because there is no evidence supporting benefit
HK oncologist: no because there is no evidence supporting beneifit and mom’s condition (old age and diabetes) is not favorable
Another HK oncologist (radiation specialist): yes for both chemo and radiation but her liver needs to monitored closely. Chemo/radiation adjuvant therapy will increase her survival by about 12% (this sounds vague and I am not so sure what this is based on). Should start chemo/radiation now (~4-5 weeks after surgery).
So 2 doctors are for and 4 doctors against adjuvant therapy. Even the 2 doctors which support adjuvant therapy have different opinions.
What do you all think? I am quite surprised to find that the two HK oncologists have different opinions because they are both private doctors. I am equally surprised by the different opinions from the two hepatobililary surgeons. I think if I consult more doctors, the opinions would likely split close to equal and this exercise will become meaningless. The majority of my family members feel that we should give up the option of adjuvant therapy for my mom and we will not present this to her as an option. This way her burden is less, both psychologically and physically. I hope our decision is right and only time can tell.
Best wishes to all of you,
MaggieMaggie,
Just wanted to tell you that while I did have chemotherapy and it didn’t initially work, I was tested to see if I qualified for a clinical trial. It was discovered that my gene-type processed things through my body much quicker than most. This meant that the chemo. drugs didn’t stay in my body long enough to do any harm to the tumors.
I am now participating in a clinical trial that gives me a higher dose than is allowed most people, so that it stays in my body longer. This Thurs. I will be getting my 2nd dose. Two weeks after that, I will get follow-up CT scans to see if this higher dose based on my gene type rather than height and weight is beneficial to me and is working against the cancer.
So, the point here is that there may be many reasons why one chemo. drug works with some and others don’t. The key here is that if one doesn’t work, try another and don’t give up on new treatments. You never know which one will work.
I do believe that having a systemic treatment such as chemo. can be beneficial even though surgery was successful. You never know what microscopic cells may have been left behind, and the chemo. is a way to attack it before it comes back.
My best wishes to you and your Mom in her recovery and treatment.
Good luck.Linda
Hi Maggie,
Congratulations on your mother’s successful surgery.
Adjuvant therapy is something which bothers me daily. Basically, there have not been enough studies completed yet to prove whether chemo or radiation reduces the chance of recurrence.In the UK, there is usually no treatment offered after a successful resection. My dad is nearly at the end of the chemo for a trial which is testing whether Xeloda reduces the likelihood of recurrence (it has been shown to work with other cancers such as colon). I personally believe from what I have read the chemo will eventually be proven to reduce recurrence (or at least extend the progression free survival), but the difficulty is the rarity of this cancer, and not enough people to take part in studies. My dad’s trial needs to recruit 360 people over 4 years – they are finding that very difficult, which shows how rare it is to have a successful resection and be able to take chemo.
Gemcitabine has been shown to reduce the time to recurrence of pancreatic cancer, so we have to assume/hope there will be some treatment which works similarly with cc. Chemotherapy is systemic, the idea is that it kills microscopic cells with are floating around the body.
Radiation has not shown any benefit (possibly down to the lack of prospective randomized studies completed?). Snezzie has been asking the question recently – what should the doctors radiate, if they see nothing? This is what the surgeon and oncologist told us too.
You encounter the same problem which we find in the UK, that is you could ask for chemotherapy, but generally will be told it is not standard procedure. Had my dad not qualified for the chemotherapy arm of the BILCAP trial he would not have been offered any treatment. I know many people who have recurrences will always wonder if chemo would have changed things; at the moment science simply doesn’t know.
You have another problem which we can’t help with and that’s how much to tell your mother. This is just my personal opinion, but if she is offered and able to tolerate chemo, I would want her to have it. One of my biggest worries was that my dad would not be offered any adjuvant treatment.
Sorry I can’t help further, it’s a shame your mother’s doctor is not more open minded – I also wonder where he gets his statistics and opinions from. See if you can show him a few of the trials that are ongoing – does he think all that work is futile?
Kate
Hi Maggie,
Welcome to the site although I am sorry that you had to find us. I am glad that you have joined us all here after reading the site for a while and you will get a load of support and help from us all. Feel free to ask anything that you want and we will all help if we can. I am glad to hear that your mum was able to have surgery and that it went well for her and I hope that her recovery continues to go well.
Yes you are right in that the diagnosis of CC is shocking and scary, we all felt that and I felt that when my dad was diagnosed with inoperable CC. But you are doing the right thing here for your mum in reaching out here and seeking information about CC. The more information you have the better you will be informed about it all, and I know from my experiences that coming here helped me so much and I think that it will help you so much as well.
I really can’t help you with your question about adjuvant therapy as my dad never had surgery so this was not something that we had to look into. But I am sure that others will be along soon to share their thoughts and experiences regarding this.
My best wishes to you and your mum,
Gavin
Hello Mlidoudou:
Let me be brief and blunt. I sought a second opinion from a cancer surgeon and cancer center with specific expertise in liver and bile duct cancer, and I may be alive today because of it. While I do not qualify for surgery, I still plan to ask for more chemotherapy after a planned course of radiotherapy. I just want to kill all the cancer that I can! Second opinions and follow-up chemotherapy? YES! I”m also trying coriolus versicolor mushroom extract along with a mountain of other supplements for as long as I can.
God Bless you both!
-Tom
Dear Marion,
Thanks so much for your encouragement. My mother’s diagnosis and prognosis has made me so worried simply because I am a pessemistic person. I understand her condition is considered quite favorable considering many others have more advanced stages. Initially, I am very thankful that we found her surgeon because he seems to be very competent and experienced in CC in Hong Kong. However, after a private consultation with him yesterday (without my mother around), I have second thoughts about him. He seems to be very subjective about his opinions on adjuvant therapy, which he is against. He does not even leave it an option for us to consult an oncologist. I do not want to upset him because my mother still needs to rely on him for follow ups. I dont want to be overly negative but I cannot help myself thinking the worse. What if the surgery did not go as well as he has claimed? I feel a little uncomfortable giving our trusts entirely on one person who has so much power on my mother’s well being.
Other than adjuvant therapy, we are also thinking of letting my mom take coriolus versicolor and immunocal as supplements. We are also planning to take my mom to vacation when she gets better from her surgery. Who knows if or when the cancer will come back?
Maggie
Dear Maggie…what a wonderful daughter and advocate you are to your mom. Congratulations on the successful resection and the quick and rather uneventful recovery she has made.
I am hoping for others to come forward and share with you their thoughts on adjuvant therapies. This subject has come up frequently and from what I have seen, there still appears to be a difference of opinion in the medical community as to whether it is beneficial, or not.
Possibly another less frightening approach could be taken if adjuvant therapy should be considered. It could be addressed as a possible insurance for the likelihood of recurrence.
The stage II diagnosis is quite favorable and who knows, your Mom may very well be in the 50 percentile of those patients without recurrence. Someone has to be there.
Best wishes,
MarionDear all,
I have been visiting this forum for the past one month and found this very informational. My mother (68 Yrs) was recently diagnosed with hilar CC in Hong Kong. Her diagnosis was very shocking and scary as most readers of this forum would agree knowing the prognosis of this cancer. My mother was lucky that her case was operable and so she had surgery exactly 4 weeks ago. Her hepatobiliary surgeon seems to be competent and we feel lucky that we found him. My mother did not have much complications except for constipation and is now recovering at home. Her pathology report came back with clear tumor margins although some margins were narrow (0.1cm). The surgeon said this is considered R0 resection. The tumor was 3 x 3 x 1.5 cm and originated from the common bile duct and invaded into the liver parenchyma. There was no malignancy found in the 5 lymph nodes removed. However, there was occasional lymphovacular permeation found around her tumor in the liver. Based on this, the surgeon said this is stage 2 cancer and my mother would have a 50% chance of recurrence rate.
As a overly worried daughter, I was trying to find other relevant information and hope to decrease her chance of recurrence. I found that some of you have received chemo and/or radiation after surgery as adjuvant therapy. Even with this, the cancer came back for some of you. What are your thoughts on this? Right now, my mother does not know of her 50/50 chance simply because we want her to live happily. If she was told, she would get so scared and her quality of life would be affected tremendously. If we tell her about adjuvant therapy, she would have to be told of her prognosis. Her surgeon thinks that chemo/radiation would not lower her recurrance rate and might scare her from it if her cancer comes back.
Your thoughtful advice would be greatly appreciated.
Maggie
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