Adjuvant therapy

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

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

Dear 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,
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:

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