March 20, 2018 at 7:19 am #96748molly_maySpectator
Thanks Mary, for making such good sense. So far it seems I’ve been left to “figure it out” verses my ONC actually addressing the issues, and its getting frustrating. What’s worse is it seems he keeps changing the orders so we keep going back to what I know doesn’t work. It’s to the point where I have to confirm the premeds with the nurse at the start of each session.
It makes much more sense to say “Okay, this drug works for nausea, but makes me really tired. Is there something else we can try or try a lower dose?” and keep pushing back on him to find a fix. He doesn’t care too much about side effects and tends to dismiss them as unimportant.
Thanks for helping me “refocus” in a much more positive way.
MollyMarch 19, 2018 at 9:13 am #96744bglassModerator
It is great to hear that your CCA has been beaten back so thoroughly. I see the dilemma you feel as to whether to continue the maintenance chemo given the side effects. There have been just a few others on this board taking maintenance chemo – it makes sense that doctors consider this given cholangiocarcinoma does like to come back.
Your “unique but good place” means that there is not likely to be any firm evidence about the impact of a slightly lowered dose for someone in your exact situation. Your doctor may have tried this with other patients in other circumstances and may have formed a clinical view about the risk involved, if any.
From what you describe, the maintenance chemo does appear to be working. My suggestion would be to push hard with medical providers to get the side effects addressed. Sometimes this involves a few rounds of trial and error before you hit the right mix of remedies.
Take care, keep us posted,
MaryMarch 17, 2018 at 6:47 am #96738molly_maySpectator
I ‘m wondering if any of you have had any experience with going on a “maintenance dose” of Gemzar (or any other chemo drug).
I’ve been on Gemzar for over a year, and am in a unique (but really good) place where my cancer still doesn’t show up on CT’s, and my ca-19 has been stable for over a 1 1/2 years. I currently get 1400mg of gemzar on weeks 1-3, and then take a week off. The “premeds” give me problems, so I only get one for nausea, which works well, but I do get really tired, very low energy etc for 3-4 days.
My caseworker, who is an RN that works with cancer patients, suggested going to 1000mg, or 1200mg instead of 1400 to see if that would help. I’ve also discussed just going off chemo (With an ONC at Mayo), but that kind of scares me.
So, net-net, cancer-wise, the cure is worse than the disease, and I really hate to think that this could be my “good time” left, and I’m not living it fully because of the side effects. My ONC, offers little in the way of opinions or advise. Have any of you tried a reduced dosage, and if so, how did it work?
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