Topic: Help with chemo?

My wife was diagnosed in October of this year and went through three sessions of chemo (sorry, I don't have the specific drugs they used but I will get them and post here) and the result of the treatment was not that good. The chemo did not shrink her tumor (actually grew a little) which is located in the upper left quadrant of her liver. So far the tumor is contained in that part of the liver with no signs of metastasis anywhere else.

She is scheduled for surgery on February 10th to remove that part of her liver.

My question is this: what specific chemo drugs seem to be the best for this type of cancer? We are located in MD and our doctors have been conferring with doctors at Hopkins but I'm not sure they have that much familiarity with cholangiocarcinoma.

Any help is greatly appreciated. Thanks.

Re: Help with chemo?

Dear TigerCruise, welcome to our elite family but so sorry you had to join us.
IF your wife is being treated at a Hospital that you feel does not treat much CC I would go somewhere like John Hopkins to be treated, second opinion and surgery. It is good they are talking to JH but it is not the same as the skilled Doctors at JH with this rare CC. How large is the tumor? GEM/CIS seems to be the first line of treatment. Another great place for treatment is Sloan Kettering.
I wish you and your wife best of luck but honestly if the tumor has not MET I would go to one of the other Hospitals known for liver surgery and treating CC.
Please keep us updated on your wife's progress, we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help with chemo?

Hi,
The best news is that your wife can have surgery.
As far as the use of  chemotherapy after surgery is concern; most doctors will recommend adjuvant chemotherapy and/or radiation or  do nothing.
There is not a standard regimen to follow after surgery for this rare cancer. so as long as your wife's surgeon is specialized in liver surgery, then your wife will be in good hands.
In the meantime, if I were your wife, I will eat well,gain enough energy reserve to prepare for a quick recovery after surgery.
BTW , if I may ask, what age is your wife and where she get treatment and surgery?

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help with chemo?

Thanks so much for your help and replies. My wife's oncologist is at St. Agnes hospital in Baltimore. Her name is Carole B. Miller and she is the head of oncology at St. Agnes and is from Johns Hopkins here in Baltimore. She comes highly recommended. My wife's liver surgeon is Steven C. Cunningham, also from JH, and is highly recommended. I feel she is in good hands and both have been outstanding.

My wife is 65 and in excellent health. Up until October, she has been in great health and even during all of this is doing great. Walks 5 miles every day, eats properly, doesn't smoke or drink and is really in great shape.

Again, thanks so much for your help. We really appreciate it.

Re: Help with chemo?

tiger....I too would like to welcome you to our site.  I have nothing to add to what has been has been mentioned by Percy and Lainy. 
Not sure whether you asked about chemotherapy for those not resected or for adjuvant therapy. (Chemo following surgery.)
In regards to adjuvant:  although the majority of physicians are leaning toward post chemo surgery, there is no data showing the effectiveness of such therapy.  Currently several trials are near completion and we expect to receive validated data within the next few month.
For unresected patients, the majority of physicians choose the Gem/Cis combo however; it has not yet been established as standard of treatment. Chemo treatments have been painstakingly listed by our Percy:
http://www.cholangiocarcinoma.org/punbb … hp?id=7843

I wish for a successful recovery from the upcoming surgery. Oh, I am sure that they will mention it to your wife, but just in case they won't:   A pillow held against the abdomen while coughing helps tremendously.  Others may also have some tricks and tips to share with you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Help with chemo?

Great news that your wife can have surgery.  I had surgery and then adjuvant chemo.  They couldn't say whether it was going to help or not, but I wanted to do everything I could.  I did decline to have radiation.

The decision is very personal based on individual experiences and the type and stage of cancer.  Best of luck with your decision, but whatever you decide about chemo is the right decision for you and your wife.

Best wishes,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Help with chemo?

Tiger a hint for the surgery. I had surgery 5 years ago for another rare Cancer in the stomach and I asked for and epideral while on the table. They said of course and it numbs the mid section for 1 - 2 days. I was so glad I did that and mention it now to everyone.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help with chemo?

My husband had an epidural as well. In comparison to another patient, he was much better off.   One word of caution though: one has to be very careful with movements and not stretch the abdominal area.  He felt no pain and decided to pull himself into a sitting position which caused his newly stitched area to rupture.  Not much later he had to go back in the operating room, be anesthetized and undergo the necessary intervention.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Help with chemo?

Hi tiger cruise and welcome to the cc family. I am actually a few days post op from having surgery and the regimen I was on that fortunately worked for me was gem/cis. Advice for after surgery yes a pillow can be helpful to grasp when coughing and things such as that .it is painful so go in knowing that there will be quite a bit of pain. If u have any further questions feel free to email me. Lainy did mention the epidural and ya know what lainy so much was going on the am of surgery that I totally forgot to ask wink

Hope, love, strength...2013 and for the years to come, Porter.

Re: Help with chemo?

Welcome, I am happy to read that your wife can have surgery. I have had two liver resections, if you would like to talk please feel free to call me 330-903-6868. I spent two weeks in the hospital post surgery and went home with two drains. The only complications I had were constipation from pain meds and and fluid retention. I got stronger and felt better each day.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider