Jannine wrote:I know it's stage 3 but didn't get a letter after that. Based on the breakdown over at http://www.cancer.net I think it has to be Stage 3B. The pathology report says it's pT3 pN1c pMX (they found nothing on a chest CT scan afterwards and the liver biopsy looked clean, so there's no evidence of mets, for what that's worth).
I'll ask when I go in on Friday about both the staging and the FOLFOX dosage. It sounds like the worst of the oxaliplatin side effects are mostly a matter of cumulative dose over time. So that will just be something to keep an eye on. Also I saw that a couple of recent studies indicate that there may not be a big statistical advantage in 6 months vs. 3 months of the oxaliplatin, when taking the neurotoxicity of the oxaliplatin into account. I'll do my best to stick it out, within reason.
The Johns Hopkins oncologist didn't make a comment either way about the 6 cycles of FOLFOX, so I assume she thought that was appropriate. She did offer to meet with me in person, but it sounds like my situation is pretty straightforward.
I have my prescriptions filled for both zofran and compazine, which they said I should take before going in for chemo. I also have ginger tea in case that helps. I'm really hoping I won't have much of a problem with nausea.
My husband does seem to have a head cold right now. He's been feeling run down for days, so I'm hoping it won't be catching by the time I go in for chemo. I'll let them know about it, in case it is something to be concerned about. Usually I only get his colds about 1/4 of the time, but things may go differently with me on chemo...
Jannine wrote:I know it's stage 3 but didn't get a letter after that. Based on the breakdown over at http://www.cancer.net I think it has to be Stage 3B. The pathology report says it's pT3 pN1c pMX (they found nothing on a chest CT scan afterwards and the liver biopsy looked clean, so there's no evidence of mets, for what that's worth).
I'll ask when I go in on Friday about both the staging and the FOLFOX dosage. It sounds like the worst of the oxaliplatin side effects are mostly a matter of cumulative dose over time. So that will just be something to keep an eye on. Also I saw that a couple of recent studies indicate that there may not be a big statistical advantage in 6 months vs. 3 months of the oxaliplatin, when taking the neurotoxicity of the oxaliplatin into account. I'll do my best to stick it out, within reason.
The Johns Hopkins oncologist didn't make a comment either way about the 6 cycles of FOLFOX, so I assume she thought that was appropriate. She did offer to meet with me in person, but it sounds like my situation is pretty straightforward.
I have my prescriptions filled for both zofran and compazine, which they said I should take before going in for chemo. I also have ginger tea in case that helps. I'm really hoping I won't have much of a problem with nausea.
My husband does seem to have a head cold right now. He's been feeling run down for days, so I'm hoping it won't be catching by the time I go in for chemo. I'll let them know about it, in case it is something to be concerned about. Usually I only get his colds about 1/4 of the time, but things may go differently with me on chemo...
Jannine wrote:Thanks for the welcomes! I got a 2-hour infusion of Oxaliplatin and have my 5FU pump; I get that off tomorrow morning. My Oxaliplatin dosage was 72.5mg/m2; 145mg total.
I got clarification on the anti-nausea meds when I went in. They suggested that I take the zofran in the morning and evening for the first 2-3 days to head off any nausea, and if I need more add the afternoon dosage; if that still doesn't work, add compazine in between so I'm taking something every 4 hours (which would be enough to cover me at the time the zofran is wearing off, but wouldn't provide constant coverage from both). It's a simpler pill regimen than every 8 hours + every 6 hours, which I appreciate. They did give me anti-nausea meds before the infusion, so I don't need to take them myself. I had held off on taking them, so I'm glad I did! Thanks for that.
At any rate, I took a zofran last night and one this morning and I'm not feeling any nausea at all (I did have a stomach ache when I first woke up, but that passed). I'm thinking I will skip the meds this evening and see how that goes.
I'm already having some cold sensitivity, but it's not too bad. Had a sip of cold water without thinking after getting home and was like NOPE. So I'm getting filtered water out of the fridge and microwaving it a bit to bring it up to room temperature. Also last night I had a banana and it was like FLAVOR EXPLOSION in my mouth. Made my jaw ache horribly. I took more conservative nibbles and was able to eat it slowly without the discomfort. Fortunately this morning I haven't had any trouble with anything I've eaten, whew. That banana worried me! And my coffee tastes fine today, at least. Whew.
No dry mouth yet, but I've got my fixings for baking soda rinse. The pump seems to be functioning fine. I'm in the Baltimore/DC area and I'm glad I won't be having to deal with the cold sensitivity in the coldest months.
I hadn't heard about the glutamine etc.; will ask the NP about that.
Thanks, all. I appreciate it.
kiwiinoz wrote:Hi Jannine
Loosing weight was something I had to worry about too and my biggest way of keeping on top of the nausea was talking anti nausea tablets as soon as any symptoms started. I tried to keep my fluids up as much as I could and I also found that if I kept taking electrolyte supplements I was ahead of the game. If I didn't do that then I found I got in a bad way and one time I spent two days vomiting after my 3rd round of Folox, which I never wanted to repeat again.
The longer it went the worse my neuropathy got, which was kind of ok. I kept on top of the first bite syndrome, lock jaw, and the worse the neuropathy got, it was almost better. I really like running, and when the first effects of neuropathy came in I really felt it, but the worse it got, the less I felt it in my feet when I ran.
I found if I was on top of fluids and electrolytes then all was good. I was introduced to nuun electrolyte tablets, which I think are a US brand so you should be able to get them.
Good luck with it and keep dropping in.
Kiwi
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