to all who've tried oxaliplatin

goldfinch · October 2005

yeah, yeah, i know...we all respond differently to the different meds...for instance, i see that neeliec and jana are dealing with diarrhea from camptosar. i had more issues with constipation from the camptosar.
so anyway...with that disclaimer, can you tell me the most bothersome side effects that you all experienced with oxaliplatin. I start that along with the ever present 5 FU and avastin (which i was on with the camptosar). any input will be greatly appreciated.
thanks.
mary

liverpoolgirl · October 2005

I can only tell you how my husband faired on oxaliplatin. Like yourself he is on 5FU Leucovorin (spelling) camptosar and avastin. He was originally on 5FU/Leucovorin/Oxaliplatin w avastin but he had really bad neuropathy, thats why they took out the oxaliplatin and replaced it with camptosar. so far so good but he has only had one infusion of the cocktail that includes camptosar. So in his experience the neuropathy was to much to bear. Yes as you said everyone is different so who knows what is ahead for you ont the new treatment plan, hopefully its bearable for you. Keep up the good fight
Debbie
aka "the English Chick"

rthornton · October 2005

Mary,

When I first started my chemotherapy, Oxaliplatin caused me to have occasional tingling in my fingers and feet (more of an annoyance than anything serious) and I experiences a sensitivity to cold. I had to order drinks with no ice at restaurants or dirnk room temperature water at home, and also I had to be careful getting things from the freezer. I still use gloves for that. The extreme cold causes me to have a burning sensation when I touch things from the freezer. But then they started giving me calcium/magnesium infusions before and after getting the Oxaliplatin infusion, and all these side effects have been greatly diminished. I still have the odd tingling or cold sensitivity, but it's very rare since starting the calcium/magnesium. So, that is something you may wish to consider.

Good luck!

Rodney

Betsydoglover · October 2005

Hi Mary -

I'm on Xeloda (oral 5FU), Avastin and Oxaliplatin. Just finished my 4th cycle.

The oxaliplatin does cause a cold sensitive neuropathy. In me at least it is especially bad in the arm in which the IV was given. Still that arm is only really "bad" for 2 days and the worst of the cold sensitivity is over within a week. My oncologist says that giving calcium and magnesium IV prior to the oxali greatly mitigates the neuropathy. I have always had that, so I don't know how much worse it would have been without it. You should probably ask about that.

I also think the oxaliplatin is responsible for the slight nausea I feel, but I could be wrong. In my own head, I'd like most to have it eliminated from my regimen. But as chemo goes, it really hasn't been too bad for me - nothing like what my two breast cancer friends have gone thru.

Hope this helps.

Betsy

chynabear · October 2005

rthornton said:
Mary,

When I first started my chemotherapy, Oxaliplatin caused me to have occasional tingling in my fingers and feet (more of an annoyance than anything serious) and I experiences a sensitivity to cold. I had to order drinks with no ice at restaurants or dirnk room temperature water at home, and also I had to be careful getting things from the freezer. I still use gloves for that. The extreme cold causes me to have a burning sensation when I touch things from the freezer. But then they started giving me calcium/magnesium infusions before and after getting the Oxaliplatin infusion, and all these side effects have been greatly diminished. I still have the odd tingling or cold sensitivity, but it's very rare since starting the calcium/magnesium. So, that is something you may wish to consider.

Good luck!

Rodney

I had a slight tingling in my toes. I also had a sensitivity to cold. Not to the point that I had to use gloves to get into the fridge/freezer (thank God) but I got an occasional jolt. Mainly, if I could not drink anything cold or else it felt as if I had swallowed a handful of needles. I also had taste differences. Don't know if it had to do with the oxaliplatin or 5fu or leucorvorin (sp), though. Everything had a chemical taste to it and it was hard to eat or drink anything for a few days. My urine also smelled highly of chemicals and that made me sick to my stomach.

Overall, my side effects were pretty mild compared to what they could have been.

pjenks57 · October 2005

I want to start with the same disclaimer that all have referred to, everyone is different.

My husband has been on some form of chemo since Oct 21, 2003. He has been on it all I think. As for oxylaplatin (never professed to be a great speller!), he had the same tingling as others have said. It is something he seems to deal with but he does complain about it constantly. His dr said that vitamin B6 may help some (he won't take it enough) and the magnesium helped a little but after several rounds of this drug he developed a severe reaction of a rash that was like hives. The dr. staff dealt with it with drugs and it went away quickly but now he is not allowed to take it any more. It did seem to help decrease the cancers in his liver.
He has been approved to begin the new Erbitux along with Xeloda. That begins next week so we shall see. I have heard some good and some bad about the effectivness of Erbitux but the main side effect they say is a pimple like rash. We are needing to do something since his cancer has doubled in size in the last three months with only being on Xeloda and only 1500mg 2x per day.
Sorry to ramble.

Good luck with your chemo and please please remember that everyone is different. I will add you to my prayers.
pj

neeliec · October 2005

Mary,
I was on oxaliplatin for 3 months--- had to stop for more surgery and then a change in chemo was decided-- the side effect were manageable. I never missed work but did become sensitive to cold, had the metallic taste, like all others have already mentioned, and felt like not eating but did eat well without problems. The neuropathy developed 2 months AFTER stopping the treatment... hands and feet are numb. Hands hurt, feet are just annoying, especially at night. One interesting side effect was what i called "first bite". At first it was fun, then with additional chemo it was painful but just for a second, literally. Anytime I put a new food in my mouth,the sides of my mouth went in-- puckered in-- like if I were sucking lemon or a really sour taste! The second bite of the same food did not have that effect!!! The palms of my hands and the soles of my feet turned black-- I don't know if from the oxaliplatin or 5FU.
I'm praying that you will have no side effects.... I wish I could be back on oxaliplatin.... any day over Camptosar--- but because of the neuropathy and the re-staging to 4, it's not an option. Do hang in there, Mary. and keep us posted. We are true blessings to each other. and like you said--- We all react soo different! May you be strengthened and healed, blessings, neelieC

kerry · October 2005

Hi Mary,

I'm sure you get many different responses to Oxaliplatin. I was on it for four months plus Xeloda and responded so well that they took me off of the Oxaliplatin and put me on a maintenance program of just Xeloda and Celebrex.

I did have the neuropathy, especially with cold and ordered all beverages without ice and kept gloves near the fridge when I needed to get something out of the freezer.

I wish you well and good results.

Kerry

livin · October 2005

Hi Mary, I had the Folifox treatment consist of 5fu leuco oxalip. and Avastin added. Had numbness and tingling of hands and feet. sensitivity to cold, mouth sores and sometimes teeth will hurt. My eyes would feel like needles going through them if they were to tear or if I cried. Neuralagia(sp) of the face. My hair only thinned a little with the oxalip., but I have a lot of hair only I could tell. The side effects became worse after my completion of my treatment 2 months later?

CAMaura · October 2005

livin said:
Hi Mary, I had the Folifox treatment consist of 5fu leuco oxalip. and Avastin added. Had numbness and tingling of hands and feet. sensitivity to cold, mouth sores and sometimes teeth will hurt. My eyes would feel like needles going through them if they were to tear or if I cried. Neuralagia(sp) of the face. My hair only thinned a little with the oxalip., but I have a lot of hair only I could tell. The side effects became worse after my completion of my treatment 2 months later?

Hi Mary, I can sort of chime in with Livin; my mouth/jaw would really ache for a few days after treatment; had numbness in cheeks and lips (once with tongue); tingling in hands; sensitivity to cold; eyes hurting.Some things did increase after chemo ended....tingling went to feet as well and my hair thinned a bit, but that ended quickly. I do notice weakness in my hands now five months after chemo); I need to pound probiotics (cultures for my intestines) but don't really know if that is oxy or just general chemo-driven. Towards the end of my chemo, my body would push through pre-treatment of Benadryl and I would have a blood pressure spike and lots of flushing on my chest at the end of chemo-day; again, don't know which drug (maybe the combo) produced it. I hope all is okay for you. Good thoughts coming your way - Maura

taraHK · October 2005

Hi Mary,
I'm on oxaliplatin + 5FU + leucovorin (FOLFOX) -- no Avastin. I've completed 7 cycles out of a planned 12.

Overall, I would say my side effects have been pretty mild and certainly manageable. I have my chemo in the hospital (48 hr infusion) but I'm working on the days I'm not receiving treatment.

Probably my biggest complaint is nausea -- but it only lasts about 3 days after treatment (I take antinausea meds during and after).

I have the finger and toe tingling others have reported and also cannot touch or drink cold things -- but that only lasts for a few days after each cycle (so far).

I have what NeelieC referred to as "first bite" and I call jaw spasm -- again, for a few days only.

I haven't had mouth ulcers but bad taste in my mouth and some tender mucuosa...

Some hair thinning (which I find emotionally difficult -- I don't have thick hair to start with!0.

I had to get a central line after ?2 cycles because my veins were screaming. I'm happy to have that now.

These are my experiences! good luck to you.

Tara

KFalvey · October 2005

Hi Mary,
I finished the FOLFOX regimen with Oxaliplatin last month. I had to omit the Oxaliplatin the last treatment due to side effects. I got the neuropathy in both hands and feet which got worse after treatment ended. I also was having problems with my breathing, swallowing, and the use of my tongue after eating or drinking anything cold. It steadily got worse; I felt it might be doing permanent lung damage. My doctor told me most people have to discontinue the Oxaliplatin between the 4th and 5th month because of the neuropathy. I thought I could finish it out, but it got so bad the last few weeks of treatment, I changed my mind. Now I wish I had quit sooner. My last X-ray showed scarring on the lungs (like I had pneumonia recently, even though I hadn't). I did have alot of mucas forming during and after each treatment which probably was the cause of the scarring.
The good news is that it worked. I'm now NED, according to all my test (pet/cat scan and CEA below normal) so it was worth it.
Best of Luck to you with your treatments.
Kandy

to all who've tried oxaliplatin

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