lakeswim wrote:Jannine. I am so impressed with you. I think we are around the same age and FOLFOX really affects me - I can't imagine running or working out. (Then again, I haven't run in a year or two due to achilles problems I got training for triathlon a few years back and from fatigue that I thought was from perimenopause but now think may have been the cancer trying to talk to me - so you probably started out more fit than I did.) In fact, I couldn't even walk or even hold things in my hands during the weeks of Round 2 and Round 3 because the Oxaly made my hands and legs cramp up. Thank goodness they lowered my dose. (Still, I am lucky to get a walk. There's no way the gym was an option for me.)
Anyway, I see you discussed the belching and stomach discomfort. This is me! So, I am wondering about the CBD oil. (Though - I am about to do Round 7 of 8 and wonder if it matters at this point). It helps you? How do I get some? Is this a "special pharmacy" thing? Thanks for any tips.
Also, how do you get your Neulasta shot at home? I need to go get it in the hospital in the same (triggering) infusion suite where I get my chemo. (I'd rather not go there when I don't have to -but, then again,I can't imagine giving myself a shot.)
Just this round, the neuropathy is really noticeable. I now have a numb spot on my left foot that was numb briefly but, after being in our (actually, really warm) pool, it's been numb for hours now. Also, my hands generally feel weird when I touch things and walking barefoot is not comfortable. And, yes, I have been on the laptop now for a while and my hands feel weird after typing for a while. The cold neuropathy isn't remotely as noticeable as it was at first (on 100% dose) but I can see the regular neuropathy kicking in now. I hope it goes away. We will see.
My hair is drastically thinning. I am wondering how long this lasts because I am not sure what I will have left. I lose more every day.
I feel lucky to be doing FOLFOX during this hot summer! I live in a cold climate. I enjoy the cold but can't imagine dealing with it while on this treatment....
Hi Lakeswim! Thanks so much for your kind words. I do get weird cramping in my legs and hands and it seems to be getting worse with each dose, but so far it isn't nearly as bad as you describe. The thing that concerns me is that the water in the bathroom at work isn't even lukewarm, and once my hands get cold in my air conditioned office, it seems like it's impossible to get warmed up again aside from going outside if it's a warm day. I think I am going to need to stay home longer, because I was just miserable the two days I went to work and was dealing with crampy hands there. I don't think I'm getting any neuropathy yet, though, fortunately.
I did try the CBD oil for a few days during and after my 5FU infusion, and I think it does help with my stomach discomfort, although it doesn't seem to be a miracle drug for me. My state is brand new to having dispensaries, so rather than try to figure that stuff out I just ordered the CBD oil online from Charlotte's Web after finding a recommendation for it here. They do seem to be a reputable vendor. I got the oil with the dropper but I have to say I don't like the taste at all (I got the "olive oil" version which just tastes like a joint, to me). So I am ordering empty pill capsules to put it in, so I hopefully won't have to taste it. I've only been taking about 5mg per day so far, and once the symptoms fade I quit taking it.
The neulasta shot is something the hospital was really not sure about; it sounds like a lot of insurance companies won't cover a take-home version. It is just the same as the one I get at the hospital; a small hypodermic that I push into a pinch of skin and then push the plunger to inject it. The needle sucks back inside the case when it's done, although it requires a little fiddling to get it to retract properly. They give me an ice pack with the neulasta because it has to be kept cold, and I store it in the fridge. It says DO NOT SHAKE on the box, sooo I don't shake it. I saw an ad on TV for some sort of slow-release version of it that they stick onto your skin at the hospital and send you home with, but that's not what I have. It looked gigantic in the ad, so I wonder if it's got some sort of built-in refrigeration inside (which would increase the price, I'm sure).
Edit to add: here's a link to the attachable version. I have no idea if it's something insurance would cover. And I think it also wouldn't work for my neulasta schedule, which has a 2-day delay between disconnect and neulasta injection. https://www.neulasta.com/onpro/
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear