1 Topic by moowal (edited by moowal Wed, 14 Nov 2012 21:35:25)

  • From: New Zealand
  • Registered: Wed, 31 Oct 2012
  • Posts: 19

Topic: need some advice on chemo treatments

Hi everyone,  I am currently on cis/gem combo chemo. I have a 3 week cycle, day 1 cis/gem, day 8 cis/gem then 1 week off. I have managed one full cycle, I had pretty much all the side effects from nausea to ringing in the ear and mild hair loss. The next cycle, 5 days after the first treatment I ended up in hospital for 5 days with sepsis so the oncologists cancelled the next session and said they would wait and start a new cycle. I feel like I just can't do it anymore, chemo really sucks!!! Im so sick of being sick. I have an appointment with the oncologist next week to discuss where we go from here. I guess my question is, is this a fairly normal regime to be on? any advice? also I have just found out that I had clear transection margins but an R1 radial margin along the left bile duct.  What does this mean???

God Bless
Mandy

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,210

Re: need some advice on chemo treatments

Hello Mandy, gosh, I really can't help with chemo as my husband never had it but I do know that GEM/CIS is a very popular cocktail. I do have a question for you though. Did the ONC offer you anything for your side effects? I do understand sick of being sick but I think if you can get the side effects under control you will feel better all around, at least I sure hope so. Please let us know what the ONC says and I will be sending Prayers your way! P.S. I know someone will be along here who hopefully can give you answers to your questions. Please hang in and be strong!

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.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: need some advice on chemo treatments

Hi Mandy,

I think Gem/Cis is a common regime to be on with this cancer. My daughter, Lauren was on Gem/Cis and 5-FU all at once for 6 months. She lost her hair, felt like she got run over by a truck for a few days, then felt ok after that. She had a few times where she wasn't able to have chemo because her platelets would go too low from the Cisplatin. She did not have much if any nausea. She got anti nausea meds before infusion. The drug was called Aloxi. It worked really well for her. She also has a prescription for Compazine, which helped a lot if she got queasy. She is now on a different chemo and takes Compazine before she takes her oral chemo, Xeloda, and feels better. She was waiting to take the Compazine when she got nauseous and sometimes she would just throw it up. So now taking it before she gets nauseous helps immensely. Maybe you could try that with your Gem/Cis. Then chemo might not be so bad. I can't imagine how awful it must be to feel so nauseous. That is the worst feeling. My heart goes out to you. I'm sorry I don't know about the meaning of your margins. I am sure one of our brainiacs will be along to answer that. Hang in there, Mandy. We are all here for you.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

4 Reply by PCL1029 (edited by PCL1029 Wed, 14 Nov 2012 23:23:22)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,733

Re: need some advice on chemo treatments

Hi,

http://www.cholangiocarcinoma.org/punbb … 833#p58833

http://www.cholangiocarcinoma.org/punbb … 198#p57198

BTW, ask your oncologist whether Gemox (gemzar+oxalipltin regimen) can be a choice for you,since Oxaliplatin may be better tolerated than cisplatin.

I do not know what the answers to the margin questions you mentioned.
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.
  • eli
  • eli
  • Legend
  • Offline
  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 561

Re: need some advice on chemo treatments

Hi Mandy,

The drawing below shows the anatomy after resection of hilar cholangiocarcinoma. I don't know if your resection was exactly like this or not. It doesn't really matter; I need this drawing to explain the margins.

Transection margin is the margin between the remaining part of the liver and the part of the liver that was removed (beige color). Your transection margin was clear of cancer cells.

Radial margin is the margin where they cut the bile ducts (green color). R1 radial margin means that your radial margin was microscopically positive. When they examined the removed tissue under a microscope, they found cancer cells very close to the cut or right at the cut.

Please note that I'm not a doctor. Take everything I said with a big grain of salt.

Best wishes,
Eli

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2826674/bin/hpb0012-0147-f4.jpg

  • From: New Zealand
  • Registered: Wed, 31 Oct 2012
  • Posts: 19

Re: need some advice on chemo treatments

Thankyou so much, all very helpful and informative as always, I have so much to learn. I will will read and re-read all the above and go to the oncology meeting armed with questions and im sure feeling much more confident in my treatment.  One last question is the 2 weeks on and 1 week off quite commen? I have read somewhere that generally the regime is cis/gem day 1, only gem day 8 and then 2 weeks off? or is it that they start you off with all of it and then taper back as necessary depending how you cope.

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: need some advice on chemo treatments

Hi Mandy,

When Lauren was on Gem/Cis, she always had one week on and one week off. She has only done 2 weeks on and one week off with an oral chemo called Xeloda and Oxaliplatin. I have never heard of the Gem/Cis and then Gem and then 2 weeks off. I think everyone does things differently, but there may be a reason why they do it that way. If there is a reason, I'm sorry I don't know it.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

8 Reply by PCL1029 (edited by PCL1029 Thu, 15 Nov 2012 19:14:17)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,733

Re: need some advice on chemo treatments

Hi,
Gemcitabine 1000-1250mg/m2+ cisplatin 25 mg/m2 on day one and day 8 and then off for one week is the standard protocol as one cycle( 21 days) for CCA.
GEMOX, GEMCAP, FOLFOX are other choices too. Adjustments of dosages are quite common because of the lab and scan results.
5FU,for unknown reasons, seems to  have better results when use in extra hepatic CCA than intrahepatic. ( from literature review ,uptodate.com)
By you must discuss each one with your doctor based on efficacy and side effects after you study all the regimens.
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.