benben wrote:I'll be talking with my ONC about this Tuesday when I go in for treatment #2.
First one was pretty smooth, only had mild first bite syndrome for about 24 hours, tired day after disconnect - otherwise good to go.
When first discussing with my ONC he suggested I go at least 8 session as that seemed to be the magic number and each session beyond that would decrease chance of recurrence by about 1% each session.
Interesting this study suggests 6 sessions is only 1% more likely to have recurrence than 12 sessions. Definitely something to think about when considering life long Neuropathy.
So what did your Onc say? I talk to mine tomorrow and I'm sure he will want me to finish all 12 rounds.
I only spoke to the assistant Onc whom stated that she spoke with one of the authors of the article the day prior.
I also noted how she talked about Node involvement being different than the article so figured perhaps she was confusing this article with another study.
I haven't spoken to my ONC directly about it, but will the 20th - my next scheduled treatment. I will actually bring in the printed article and hand it to him and suss out his feelings.
If I were to guess he's going to say I need to go more than 6 as he seems to prefer aggressive treatment. When we were first discussing treatments prior to my consent of treatment he said It's best if
people can go at least 8 sessions. His belief was that 8 seemed to be a good cutoff for getting as close to 12 without recurrence and not having extreme neuropathy that was long lasting.
Of course he thought that dropping Olaxi and continuing with 5FU for the 12 was better. In my case I am stage IIIB with one node involved. Tumor was well defined, but did go all the way to the outer wall with like less than .01mm to exterior.
So based on that alone he'll probably want me to go as long as I can. That said my first treatment was rather non-eventful, but my 2nd treatment was quite tough. I had a lot of extra stress going on with my mother (whom was supposed to be my companion through treatments) left back home. My son got sick and I sent him to live with my brother until he's over his illness as first treatment sent me into neutropenia. So I've been completely alone since disconnect day. I experience much more fatigue than first treatment, along with some nausea, some fevers approaching 100 - but never reaching the critical 100.4. Some mild redness in the belly button and a return of mucus stool with quite a bit of blood. So I did talk with ONC on the phone this morning about the blood/mucus stool - which I've had periodically since LAR was performed. I showed a picture of the bowel movement to the nurse that treated me and she did look concerned, but said the ONC didn't feel too concerned because I didn't exhibit a fever. Aside from all that, I've noticed quite a bit of hair coming out in the shower. I'm not really vain, so the hairloss thing doesn't bother me much. I'm more concerned about the neutropenia and mucus/blood bowel movements. I'm set for Granix shot to boost WBC on 18th and 19th. Got a letter from insurance stating they would grant these 2 doses, but would deny future doses as they have connections with Sandoz that makes Zarxio. UGGh - pharm money games. Today was the first day that I haven't felt really exhausted. Pump disconnect day I came home and worked 8 hours and then literally crashed and slept 24 of the next 30 hours. I felt good the next morning, but by mid day I was back to fatigue. Also on day after infusion I had some first bite, little numbness in fingers, and very minor cold sensitivity. It went away the next day only to return the day after disconnect to a larger degree. I'd really like to do only 6 treatments after treatment 2 and the WBC. Hoping the growth factor works and next treatment isn't any worse than this last one.