Topic: Gemcitabine question

Does anyone have experience with gemcitabine alone? Oncologist suggested both gemcitabine and cepcitabine post liver resection to kill off any micro cells that may be lingering. If no cancer exists wouldnt gem be enough to kill off any cells? I appreciate any input.

Re: Gemcitabine question

Lorna -
My husband did Gem plus Oxaliplatin for 6 months after his resection. I know that most often the Gem is given in combination with something else, most often I think I have seen the Cisplatin and the Oxaliplantin but there will be many more who should chime in on this.
I had pretty much the same question for our Onc in regards to the chemoradiation that we just started. Why would be want to do chemo if the cancer was gone? He said that if you think of the cancer like a weed in your yard (I think dandelions since I have so many) and they scatter seeds all over then you use a systemic weed killer over the whole yard to kill off those scattered seeds that you can't see. We are now on the chemoradiation which he equated to going back with a spot killer.
I am not sure about Gem alone but I am sure someone will answer.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Gemcitabine question

Lorna....Gemzar (gemcitabine) had been a standard of treatment. The ABC-1 and ABC-2 clinical trial (UK) compared to gemcitabine alone, the chemotherapy combination of cisplatin and gemcitabine and data showed improved overall survival of patients with locally advanced or metastatic cholangiocarcinoma.  This is data reflects results of patients with detectable disease however; given the fact that we don't have any other large scale studies proven otherwise, physicians like to use this reasoning for adjuvant therapy as well. To this date we still don't have prove whether adjuvant therapy is beneficial, but we are awaiting results of some studies within this year.
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: Gemcitabine question

I am not familiar with gem alone...but similar to kris's husband I have been offered the gem/ox post resection as well in case of any microscopic cells.

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

Re: Gemcitabine question

LornaDoone wrote:

Does anyone have experience with gemcitabine alone? Oncologist suggested both gemcitabine and cepcitabine post liver resection to kill off any micro cells that may be lingering. If no cancer exists wouldnt gem be enough to kill off any cells? I appreciate any input.


Hi LornaDoone,

I'm glad you asked this question, as it is what my mom's oncologist recommended  gemcitbine alone for 6 months, once a week infusion as adjuvant chemo post resection.  The oncologist said gem alone since we are cleaning up microscopic cells.  But i'm learning on this site that many people post-resection actually receive duo chemo regimen.   I'm curious to hear if anyone else has done gem alone and how did they feel. 

LornaDoone, what did you end up deciding or finding out?

Thank you
Serena

Re: Gemcitabine question

Hi Serena,
So sorry to hear about your mom.  I pray that whatever decision she makes will keep her with you for many, many years to come. My boyfriend decided to go with the chemo mainly because of the very high recurrence of this type of cancer as well as 1 lymph node involvement.
He started on the Gem but only did 3 cycles because it was too hard on him. His white blood count and platlets were very low and never seemed to bounce back. Although he is very healthy,  in the past  year he has had back surgery, neck surgery and liver resection so i believe he never had time to recover before starting chemo.
He also stuggled with the fact that the doctors said they have no evidence that adjuvent chemo will even be beneficial. So after 3 rounds and many, many hours of struggling with the decision he decided to stop the chemo this past June.
On sept 5th he had his second scan since surgery and to our absolute horror it showed recurrence to the liver.
So as you already know it is a personal decision and your mom has to do what she feels in her heart is best for her. I stand by my boyfriend and will be by his side through every step of this horrible unpredictable disease as I am sure you will be with your mom. God bless you both. Please keep us posted on what she decides and how she is doing.

Lorna

Re: Gemcitabine question

Dear Lorna, you are a very special lady as sometimes it is very hard to step back and allow the patient to make their own decision but it really is theirs to make. When my Teddy decided no Chemo I had to honor it and never said a word but then he was told it was only palliative and would not help. He chose quality over quantity of life and as it turned out it was the correct decision.
I have to ask you if this is your real name or is it from the Book/Movie? Or just the name you picked for the site. Lorna Doone was one of my most favorite movies!

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: Gemcitabine question

Lorna.....so sorry to hear of the recurrence.  Have you consulted with an interventional radiologist for possible treatment?  My heart is 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: Gemcitabine question

Hi Serena,

My husband was offered gem alone after his second resection for ICC a couple of years ago. He'd recovered uneventfully from surgery, and from his first surgery 8 months prior, and is otherwise fit. Chemo side effects were really not bad - some hair thinning, tiredness in the last couple of cycles and low platelets once. He found it more psychologically difficult. Gem alone was offered on the basis that there was no clear evidence, but  it might help and wouldn't be too toxic.  He had a recurrence and a third resection a couple of months ago and is now on adjuvant Xeloda. We had molecular testing done after this latest resection. It showed that Xeloda should be effective and I think it was worth the money just for that - makes it easier to tolerate side effects if you know it is likely to be helping.

Best wishes to you and your mother in making the decision.

Genevieve

Re: Gemcitabine question

I am not a candidate for resection.  I started with eight rounds of carbo/gem then went to gem only for about 10 rounds to take some stress of liver and kidneys.  The main tumor in my liver decreased from about 18 cm to about 11 cm with carbo/gem and help steady for the first eight rounds of gem only.  It increased slightly over the last 2-3 rounds of gem only.  I am going back to carbo/gem because it worked.  When it no longer works, I will explore other alternatives, probably going to second line treatments, then eventually to a trial if I can find a suitable one at the time.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Gemcitabine question

Hi Lainey,
Lorna is my real name and Doone is a nickname I had growing up. But, it was more for the cookie Lorna Doone rather than the movie. Now I'll have to check out the movie!

Marion, the oncologist wants to do the chemo first and see where it takes us and in 3 months when he gets a scan we will go from there. But, thank you for mentioning it. We also consulted with Mayo clinic and sent all his records there and they concur that folfox is the way to go for now.
Can anyone give me info on the genetic testing? Does it have to be done on the new tumors that are now present? I don't understand why they didnt do it in the first place when he had the resection done since there is such a high recurrence.
I also want to say that although I don't usually post I read the site daily and have learned so much from you all . Thank you for all that you do here it means so much. Peace and love to you all.
Lorna

12 (edited by marions Sat, 04 Oct 2014 23:04:58)

Re: Gemcitabine question

Lorna....good news, a game plan has been put in place.

In regards to the tissue sample taken: perhaps the institution still has it and will release it for genetic testing. It's worth a try.   
For testing many use FoundationOne. 
http://www.foundationone.com/docs/Found … erview.pdf

This type of testing may reveal molecular behavior for which an agent has been identified. 
As more agents are discovered and developed, the use of this testing will increase.  It is a new development aiding in the treatment for cancer and other diseases and slowly is gaining momentum amongst the medical community.
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: Gemcitabine question

Marion,
Thank you for your response.  I am definitely going to look into it.

Lorna
xo

Re: Gemcitabine question

Fourteen months after I was diagnosed my onc sent a sample to FoundationOne.  Not sure why she waited so long; I had asked about it months ago after reading about it in the Boards.  It could take up to three weeks to get results back.

One thing I learned at Mayo is that the standard testing is the solid tumor panel.  I was advised to also get the hematology panel testing done to look for a specific thing - FGFR4.

Chances of getting a match back are small, but if you get lucky, you will be able to get a specific treatment plan with a higher probability of success.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Gemcitabine question

Lorna,  Thanks for sharing his experience with Gem.  I'm sorry about your boyfriend's recurrence, but like Marion said, I'm glad to hear a plan is set.  How is he doing now?  Hopefully you guys can get the genetic testing done. 

Genevieve,  thank you for also sharing what your husband has gone through.  I'm sorry that he had another recurrence.  How is he recovering from his resection?  And how is his treatment with Xeloda going? 

Duke,  any luck with your results from Foundation One?  I admire your fortitude and positive attitude.  Good to hear you already have a solid action plan as to how to proceed.  I hope you continue to make progress with your current gem/cis treatment, without adding more stress to your kidney and liver. 

Thank you all for giving me some insight.  On our next meeting with oncologist, I'll be sure to mention Foundation One and see where we can go with that. 

Serena

Re: Gemcitabine question

FoundationOne reported back that there was not enough material to study.  So, I am getting a lymph node removed tomorrow to send to them  ENT could not promise there would be enough material using just a needle biopsy (he failed once a year ago).  Onc wants the sample taken before I restart chemo "(because there will be more cancer cells now").

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Gemcitabine question

Good luck tomorrow, Duke. Do they go in with a Laparoscope for that? Like in and out? Wishing the best for you.

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: Gemcitabine question

Good luck with this Duke, hope it all goes well for you!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Gemcitabine question

Duke...good luck.  Just wanted to mention that the needle biopsies have a high negative reading anyway.  Will be thinking of you tomorrow.
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: Gemcitabine question

Duke-  Thinking of you today; hope all goes smoothly.
Catherine

Re: Gemcitabine question

Hi Serena,

He's recovered from surgery really well, thanks, cycled 60km the other day so feeling quite fit, just a bit more tired than usual from the chemo. He's finding the Xeloda okay. It's in tablet form so is easier to take than the gem infusions - no needles. It's the drug  chosen for use in a large adjuvant therapy trial in the UK which is going at present.

Best wishes,

Genevieve

22 (edited by DukeNukem Thu, 16 Oct 2014 22:30:15)

Re: Gemcitabine question

Lymph node was removed Tuesday and I had chemo today.  Biggest "problem" was having three people ask me the same questions before surgery - ones that were on a form that no one asked if I had completed.  When I asked about that, the answer was, "Most people don't remember to complete it so we don't ask for it."  No stitches - they glued me back together.  No pain afterwards,but taking antibiotics.  There were two nodes they could have used, picked the one farther from the aorta and a nerve.  This node had grown perceptibly over the last 14 months so it was a good candidate.

This is from update I sent my family about getting tissue to send to FoundationOne:  "..., getting three hospital systems, two oncologists, a surgeon, and a test lab to move in the same direction is like herding cats.  Not to mention all the support people who actually get the work done."

I will post whatever I learn from FoundationOne.

Does anyone have something that works for them to get platelet count up?  Mine was 139 late last week but down to 84 today.  Had to cut back on my dosages.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love