prs wrote:Back in 2015 the standard chemo protocol was twelve 2-week cycles of Folfox, or eight 3-week cycles of Xelox. I chose the Xelox, but after six cycles my blood counts fell so low the 7th cycle kept getting delayed. After three weeks delay my oncologist cancelled the last two Oxaliplatin infusions and I finished those cycles with Xeloda only.
I would also point out that my Xeloda dose was initially set twice as high as the dose during radiation. However nausea and diarrhea set in big time towards the end of the second cycle and, after I detailed my symptoms, my Dr immediately reduced my Xeloda dose. I was able to at least tolerate the treatment after that.
I guess what I'm trying to say is that my advice is to go into chemo hoping it's not going to be that bad, but if it becomes intolerable...and by this I mean you are thinking death might be preferable...and believe me I was there...then don't just quit! Go in and talk to your Dr and get the dose reduced.
When my Dr cancelled the last two Oxi infusions, I questioned if that was going to increase my chance of a recurrence. He responded he thought 80% of the effectiveness of the treatment was from the Xeloda. I don't know if he said that to make me feel better, but I remember thinking that, if true, he should have reduced my effing Oxi dose too!!!
mozart13's data seems to indicate that if you can gut out the treatment for at least four months, you are well on the way to winning the battle.
prs wrote:......
On the oxi infusions, they were infused thru a vein on the inside of an elbow, and the nurse would find the best looking vein to stick each time I went in. For later cycles I found it worked best to switch arms half way through the infusion, and also slow down the infusion rate. Towards the end it was taking six hours to do the infusion.
Jolene wrote:...
I won't be bombarding this thread with Xelox effects and have posted the details in another thread if anyone is interested in responding or reading !
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59315&p=490994#p490994
nifty624 wrote:Hi All,
I had the TAMIS procedure last Friday and all went well, I have had very little pain and very little bleeding. My main challenge is getting the ileitis back under control after two days without meds. I've had to go back to the tincture of opium for a couple of days to stop the turbulence and get back on track. This has complicated my recovery slightly in that I am unable to digest any food and am apparently not absorbing any nutrients or calories again (like in January after the injury first developed) so I am anxious to get it under control so I can fuel my body and recovery.
But overall, I feel really good. If I wasn't weak with lack of food energy, I think I'd feel up to longer walks with my dog and almost all of my normal activities.
I've got a follow up with the surgeon on the 23rd and a follow up with the oncologist next week on the 17th.
Jolene wrote:Just went for my first Xelox cycle today and apart from an aching left arm which can't seem to grip onto anything without causing pain, I am feeling better than I thought...
Habr-Gama et al. [10] in their last published series, established an intense follow-up protocol, includingwith subsequent spacing of controls until one year of treatment with radio-chemotherapy
- a monthly clinical visit with
- digital rectal examination (DRE),
- rectoscopy (EUS),
- CEA levels and
- CT during the first three months,
(at which time a cCR is considered into account)
O Stoma Mia wrote:Jolene wrote:Just went for my first Xelox cycle today and apart from an aching left arm which can't seem to grip onto anything without causing pain, I am feeling better than I thought...
Jolene -
I was wondering what kind of follow-up/surveillance protocol you are under while you are on Xelox. I'm not familiar with W&W procedures. This is alI could find when I did a search:Habr-Gama et al. [10] in their last published series, established an intense follow-up protocol, includingwith subsequent spacing of controls until one year of treatment with radio-chemotherapy
- a monthly clinical visit with
- digital rectal examination (DRE),
- rectoscopy (EUS),
- CEA levels and
- CT during the first three months,
(at which time a cCR is considered into account)
Rikimaroo wrote:lakeswim wrote:Rikimaroo...
I am so sorry to hear you had the local recurrence. I imagine that must have been devastating for you, but you sound like you have a positive attitude.
I am missing where you are in the process? Did you have your surgery? And I’m curious why you want a permanent ileostomy (have to read up on this option).
Also, I’m curious how long you went after chemo/rad before the recurrence was discovered? How long did you W&W? And, did you feel any difference in that area (any pain or discomfort?)? I know you said you went for a scheduled flex Sig and they found it....
Hi LakeSwim,
I had surgery april 3 2018, LAR/Liver resection. They removed my entire rectum. I did FOLFOX after the surgery for 3 months, 6 treatments. I did Chemo/Rad back in February of 2017 and everything look clear, flex sig, I didn't do anymore MRIs at the time. Obviously the cancer wasn't gone and about October 2017 it showed back up, but I had signs of blood in my stool again, so I knew it was back and confirmed on my next Flex Sig.
It was my fault for not following up with my Oncologist as we spoke today regarding that, and he said he mentioned to me to follow-up with him after surgery, which I didn't do, but I should of followed up with him either way after Chemo/rad was done. I could of pressed for FOLFOX like PRS and others did -I really made some crucial mistakes here, and now I have to dig hard and deep to get out of this hole I made for myself. Only reason I mentioned permanent ileostomy is because the unpredictability of pooping now and multiple trips, the bag was easy and I could do anything. It will probably get even better then it is now, I am maybe a little impatient but it could be the way it is going forward. It's hard to make a commitment without the worries I might be stuck in a bathroom somewhere for 40 minutes. I have no pain.
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