The Colon Club

Nine years out from treatment with oxaliplatin, and my fatigue and neuropathy are getting worse. Have seen primary doctor, oncologist, neurologist - all looked for OTHER causes because they have no solution for side effects of chemo and don't want to admit that's the problem. Is ANYONE doing anything for survivors with these problems?

I'm a year and a half out of treatment, and my neuropathy in my feet hasn't really improved. I'm trying acupuncture to see if it helps. My cancer center spa provides $500 worth of services to cancer patients so I thought I would try. If it works I will continue and pay. I have had two treatments haven't noticed any real change yet. My neuropathy in my hands has improved I used to drop things quite a bit. My feet don't hurt just tingle and feel weird. Doesn't prevent me from doing anything, but barefoot on hard services is uncomfortable. I generally wear shoes or slippers. Now that it is getting cold I think it can make it worse. I don't know what solutions there are. My oncologist just says it takes time and may never go away. It is quite annoying.

I agree this stuff sucks and is hard on the body and mind. My chemo brain is getting worse, my neuropathy is getting worse and no one forwarned me about the possibilities of these long-term side effects. Also, the doctors all act like it shouldn't be going on but with all of us that have this crap they have to be aware. Of course, we shouldn't be surprised we let them put that poison in us

starla566 wrote:I agree this stuff sucks and is hard on the body and mind. My chemo brain is getting worse, my neuropathy is getting worse and no one forwarned me about the possibilities of these long-term side effects. Also, the doctors all act like it shouldn't be going on but with all of us that have this crap they have to be aware. Of course, we shouldn't be surprised we let them put that poison in us

Well, If I'm around for 9 years and NED (which I sure plan to be), I won't mind too much the ongoing neuropathy.
Of course I hope it doesn't get any worse and hope it subsides, but if it means life I'll take it.

Neuropathy sucks! My onc had warned me when I was first diagnosed that it usually gets worse after treatment stops and it could be anywhere from 3 months to a year and a half before it goes away with the possibility of it even being permanent. Last week (2 months from last chemo) I started experiencing what I can only describe as a pulsing electric shock sensation in my hands and feet. I also get a similar shock sensation going down my legs if I nod my head forward. This makes me think I still have a while before it starts getting better.

I often read, but don't respond often to posts lately. I'm no longer under treatment, but I do like to keep up with what's being said on here.

I'm responding to this one, because it's a subject that's near and dear to my heart - this blasted neuropathy that was caused by Oxaliplatin. I received 10 rounds, ending in October 2016, when my neuropathy became too much for me to continue. My oncologist actually wanted me to have one more round, but I flat out refused. I got two treatments of Folfox + Avastin, but without the Oxaliplatin, then he switched me to Folfiri + Avastin. He said it was about as effective as Folfox.

About as effective? Really?? The main side-effect of Folfiri is diarrhea, which quits when you stop Folfiri. Folfox is the gift that keeps on giving. I'm still having trouble with the fact that, if Folfiri is as effective as Folfox, why was I given the chemo with possibly permanent side-effects? I don't have pain, but I can no longer feel much with my hands and feet. I used to be a really fast touch typist - now I'm reduced to two fingers 'hunt-n-peck' and having to look at the keys. I can hardly button my shirt, tie my shoes or buckle my belt. I can't feel the smoothness of my wife's skin. Hobbies I used to enjoy are a memory. I can't safely ride my motorcycle.

I'm alive, and I'm currently stage 4 NED. So I am thankful for chemo's work. Butt why in Hades give us something that reduces the quality of whatever life I have remaining when there was a better option? Because it's chemo, a lawsuit is out of the question - black label warning and all that. So I'm resigned to living a longer life, but one with much lower quality than I would have preferred.

I wasn't even warned. Sigh.

We get cancer and we receive the treatment of the day for that time. When I was receiving chemo I asked the oncologist about long term side effects. He just said wait and see, we will deal with them when they occur. Well I had my cancer removed in Jan 1998 , I also finished chemo , 48 sessions for an aggressive st 3c tumour into six nodes in 1998. Next Jan will be my 20th anniversary still ca free. I have severe motor sensory peripheral neuropathy of both legs, I have an auto immune disease of the kidneys causing protein loss of up to 8 grams a day. Three kidney biopsies have not revealed cause. I take cyclosporine twice a day for it. I have type two diabetes. I have auto immune hepatitis and I have seronegative poly arthritis . It is also auto immune and they are not sure if it is psoriatic or rheumatoid. I think it is psoriatic as I have significant first joint damage in my fingertips , nail damage , redeye of a morning and I suspect that it is attacking my lungs which have half filled with fluid on occasions. I get by with fluid restrictions and doubling my diuretic dose. Apart from my surgeon who monitored me for six years and kept telling me I would die. No one from the health industry has ever been in contact with me regarding ongoing side effects and problems . Considering I have survived twenty years you would think that at least someone might be curious as to why. Considering I was told that any problems would be dealt with when they occur I feel that someone has seriously neglected their duty of care. Ron , dxed at 48 ,now old and cranky at 67 & 3/4.

Well, I am so sorry about these side effects that showed up after the treatment was finished. Oxalyplatin sounds really nasty. Now there are some studies showing that three months regimes are almost as effective as 6 months, but is there a significant reduction in side effects? Perhaps is too early to say it, at least for long term side effects. After surgery, when I get my adjuvant chemo plan, I will really think a lot about consequences for quality of life, but will doctors be honest to me or just think in term of survival?

All the best

Claudia

I am wondering the same thing. I asked my onc about the effectiveness of 4 cycles of Oxi versus 6, and he basically said that it was about maximizing effectiveness vs. minimizing side effects. If I have persistent numbness at any point, they will stop the treatment. However, if this shows up a month or so later, then what good is that approach? Am wondering if I should just ask my onc to stop at 4 cycles and continue with the Xeloda.

heiders33 wrote:I am wondering the same thing. I asked my onc about the effectiveness of 4 cycles of Oxi versus 6, and he basically said that it was about maximizing effectiveness vs. minimizing side effects. If I have persistent numbness at any point, they will stop the treatment. However, if this shows up a month or so later, then what good is that approach? Am wondering if I should just ask my onc to stop at 4 cycles and continue with the Xeloda.

Exactly. Since I really didn't have symptoms during chemo, I would feel a little tingling for a day or two after an infusion and it would go away. As a result, the dosage was never reduced which may have saved me a little after. My neuropathy kicked in about a month after completion. I live with it, but it's annoying. I only had 6 cycles, I think my oncologist lowered the dose of oxi once because of weight loss and diarrhea. My xeloda was reduced 2-3 times due to diarrhea. I am over a year and a half out of treatment and still have it. May be more noticeable now due to the colder weather.

Has anyone experienced professional massage of the hands and feet helping with neuropathy, at least temporarily?

heiders33 wrote:Has anyone experienced professional massage of the hands and feet helping with neuropathy, at least temporarily?

HI,
I often have a massage of hands and feet or reflexology. It helps but so far only temporarily (hours max).
It's still worth it even if just for a short relief. I have to say however that I never went to have reflexology regularly. they say I should come once or twice a week and then it has a chance of helping more. I plan to try but haven't yet.
My Neuropathy started only after I finished the chemo so I took the full 12 cycles of Folfox with no reduction in Oxali.

Tali

debbieshields wrote:Nine years out from treatment with oxaliplatin, and my fatigue and neuropathy are getting worse. Have seen primary doctor, oncologist, neurologist - all looked for OTHER causes because they have no solution for side effects of chemo and don't want to admit that's the problem. Is ANYONE doing anything for survivors with these problems?

Hi Debbie,
I'm linking a previous post with info regarding a topical cream that has helped other members with their neuropathy.

viewtopic.php?f=1&t=56876&hilit=neuropathy+topical+cream

Hope it can be of assistance to you.
peanut

I have a new side effect and the oncologist says it's not from oxi. When I bend my head down, it feels like an electrical impulse shoots across the tops of both feet. It only happens when I bend it down.

I'm scheduled for an MRI on the 11th of December. Ugh.

Is she right?


Regular CT scan scheduled for the 8th. Hopefully we'll see even more improvement. *praying and knocking on wood*

peanut_8 wrote:

debbieshields wrote:Nine years out from treatment with oxaliplatin, and my fatigue and neuropathy are getting worse. Have seen primary doctor, oncologist, neurologist - all looked for OTHER causes because they have no solution for side effects of chemo and don't want to admit that's the problem. Is ANYONE doing anything for survivors with these problems?

Hi Debbie,
I'm linking a previous post with info regarding a topical cream that has helped other members with their neuropathy.

viewtopic.php?f=1&t=56876&hilit=neuropathy+topical+cream

Hope it can be of assistance to you.
peanut

I was going to link to this post too, Peanut.
This cream was called by the compound pharmacist when I picked it up "the holy grail of neuropathy treatment." I know several people have found some relief from it, although over time I've found it's most helpful with pain vs. numbness, since it is meant to stop the nerve pain. It does increase blood flow, so I found it helps some with the constant foot and leg cramps that the neuropathy causes me, but in spite of this my affected area has crept from the pad and bottoms of my toes back over my arch and toward my heels. I don't know if using the cream more often would help more or not. So does it help? Yes! It also is a good local painkiller so that you don't have to take something orally that makes you drowsy. Does it reverse or heal the neuropathy? Not that I've seen. Still, help in managing is a HUGE thing for someone who has cried when a sheet touched her toes from the pain.
--WriterGirl