Gemcitabine question
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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
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
Duke…good luck. Just wanted to mention that the needle biopsies have a high negative reading anyway. Will be thinking of you tomorrow.
Hugs,
MarionGood luck tomorrow, Duke. Do they go in with a Laparoscope for that? Like in and out? Wishing the best for you.
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
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
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
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/FoundationOne_tech-info-and-overview.pdfThis 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,
MarionHi 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.
LornaI 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
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
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