Hi guys and gals,
Just had my 5th cycle out of 8, of the above mentioned which i am having combined with a two week dose of xeloda. Im having it via an infusion into back of hand. whether it was bad luck or not yesterday im not too sure, but it took 4 attempts to get the damn needle to stay in the vein!.
But during the night (awake for 4 hours) and today, it really seems to have got in the system regarding side effects. Im getting the obvious coldness side effect, but also getting a sensation where i want to scratch my body in various different places. And no its not phleas or crabs!!!
Also the tingling sensation has got quite bad, just a bit worried i suppose as i do a manual job which involves my hands. And ive still got 3 courses left. I like to hear from anyone in the same boat and you guys who had to reduce the oxy or cut it short all together.
Kind regards
Nick
Oxaliplatin!!!
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NICK THE BRIT
- Posts: 161
- Joined: Fri Aug 11, 2006 5:45 am
- Location: BIRMINGHAM ENGLAND
OUCH on the 4 tries to get that darn needle in!! I hear you about the Oxilaplatin Nick. It gets worse the longer you are on it too. I would speak to your oncologist about it and see if he can cut back on it or stop it alltogether if it is getting bad.
When I went through my Chemo, I would have the numbies in my hands and feet and some itching as well. It would normally go away right before my next treatment. When I would come home the first day of my treatment and take a drink or bite down on food for the first chew, I would have a pain shoot through my jaw as well. The best way to explain the pain is if you bite down on a piece of aluminum foil. It would do this just on the first drink or bite of food for the first couple days or so then be gone! My numbies always went away before my next treatment until my last treatment! After that last treatment, it just stayed with me. I STILL have the numbies in my fingers and feet, but not near as bad now. It is going away VERY VERY VERY slowly!! I have now been off the Chemo for 14 months now. I DO take B6 and B12...100 mg a day which helps. I really notice the numbies if I stop taking it. My oncologist told me in August that since I HAVE noticed some change for the better, that he expects it to go completly away in time. He said that nerve endings take a LONG time to heal and it could take up to 2 years.
This is why I say to talk to your oncologist about this as it sounds like you have it worse than I did for sure already. I hope this helps you some!!
Keep smiling and remember you should be able to look out and see the light at the end of the tunnel now!!!!
HUGSSSSSSSSSSS Peg
When I went through my Chemo, I would have the numbies in my hands and feet and some itching as well. It would normally go away right before my next treatment. When I would come home the first day of my treatment and take a drink or bite down on food for the first chew, I would have a pain shoot through my jaw as well. The best way to explain the pain is if you bite down on a piece of aluminum foil. It would do this just on the first drink or bite of food for the first couple days or so then be gone! My numbies always went away before my next treatment until my last treatment! After that last treatment, it just stayed with me. I STILL have the numbies in my fingers and feet, but not near as bad now. It is going away VERY VERY VERY slowly!! I have now been off the Chemo for 14 months now. I DO take B6 and B12...100 mg a day which helps. I really notice the numbies if I stop taking it. My oncologist told me in August that since I HAVE noticed some change for the better, that he expects it to go completly away in time. He said that nerve endings take a LONG time to heal and it could take up to 2 years.
This is why I say to talk to your oncologist about this as it sounds like you have it worse than I did for sure already. I hope this helps you some!!
Keep smiling and remember you should be able to look out and see the light at the end of the tunnel now!!!!
HUGSSSSSSSSSSS Peg
I got 12 treatments, all through a Mediport implanted in my chest. When I pick up something cold, it's like picking up a cactus. And I get the jaw pain with any sour or bitter foods. (My favorites! Fruits and veggies) The pricklies go away right before the next treatment, and now that I've just had my 12th and last dose, I'm not sure how long it will take to fully go away. It's been a week, and it's no better at all. I can usually see some improvement after a week. My final dose was a bit higher than the others. The good news about oxaliplatin? It works. When they came out with it, the survival rated improved markedly. I think Avastin is doing the same thing. They're two amazing new treatments.
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NICK THE BRIT
- Posts: 161
- Joined: Fri Aug 11, 2006 5:45 am
- Location: BIRMINGHAM ENGLAND
Oxaliplatin and I have a love/hate relationship. I love it because it is such a good chemotherapy enhancer for CC, and I hate it because all the side effects. I am 5 months out and have little feeling in my fingertips and the bottom of my feet. I have to admit there has been a slight improvement, but it is very slow. If you can tolerate it, it is worth getting it as long as you can. Cure rates went up tremendously when Oxaliplatin was added to the old 5FU/Leucovorin mix. I was able to take it for all 12 treatments, through my port and the neuropathy gradually increased at about treatment 10. The jaw pain and pins and needles will go away after you finish your last treatment but may take almost a month. I did not work during treatment but recently went back to being a nurse at a colonoscopy center, which is where I worked prior to diagnosis and ,where I was diagnosed. I am working 1 day a week in the pre-procedure area, It is tricky starting IV's with no feeling in my finger tips, but so far so good. Hang in there, and Good Luck.
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NICK THE BRIT
- Posts: 161
- Joined: Fri Aug 11, 2006 5:45 am
- Location: BIRMINGHAM ENGLAND
Magnolia,
Yes I say it's ironic too, and helpful all at the same time; I know I would have blown my symptom (Rectal bleed times one) off If it were not for my job. I am a year out from diagnosis, just had my colonoscopy, no polyps, hooray, and I thank my job for getting me to that point of diagnosis. I am 38, 37 at time of diagnosis, stage 111, with none, zero family history of any type of cancer, so who would of thought I needed a colonoscopy. I have just returned to work in the last 6 weeks, about 1-2 days a week, and sadly we are seeing colon cancer way too often, many of those in the early 40's. So I think I am in the right place, and can encourage others and be supportive. I have been successful in getting both my parents to have a colonoscopy at 60 y.o. but cannot convince my 40 year old brother to have one. I was tested for HNPP and am negative, so that is good in looking at other preventative surgeries for me.
What about you, what stage and when?
Suzie
Yes I say it's ironic too, and helpful all at the same time; I know I would have blown my symptom (Rectal bleed times one) off If it were not for my job. I am a year out from diagnosis, just had my colonoscopy, no polyps, hooray, and I thank my job for getting me to that point of diagnosis. I am 38, 37 at time of diagnosis, stage 111, with none, zero family history of any type of cancer, so who would of thought I needed a colonoscopy. I have just returned to work in the last 6 weeks, about 1-2 days a week, and sadly we are seeing colon cancer way too often, many of those in the early 40's. So I think I am in the right place, and can encourage others and be supportive. I have been successful in getting both my parents to have a colonoscopy at 60 y.o. but cannot convince my 40 year old brother to have one. I was tested for HNPP and am negative, so that is good in looking at other preventative surgeries for me.
What about you, what stage and when?
Suzie
Suzie, I was 51 at dx. I had IBS for many years, so any symptoms I may have had were masked. I had a family history, but only aunts and uncles. No immediate family. I was dx at my first screening scope. I agree that we can't ignore symptoms in younger people simply because they're young. People don't fit into boxes. I've seen pediatric cancers in adults, adult cancers in kids, all kinds of stuff that doesn't fit the demographics. If there are symptoms that don't respond to treatment, check out the cancer zebra.
My family is looking into more aggressive screening since my diagnosis. There may be more of a genetic link than we thought. We're thinking about HNPCC testing. No one in the family got cancer at a very young age, but three of my father's sibs had it and one also had bladder cancer. His mother had either uterine or ovarian cancer. All are HNPCC associated. The youngest uncle with colon cancer was my age at dx. Worth looking into.
My family is looking into more aggressive screening since my diagnosis. There may be more of a genetic link than we thought. We're thinking about HNPCC testing. No one in the family got cancer at a very young age, but three of my father's sibs had it and one also had bladder cancer. His mother had either uterine or ovarian cancer. All are HNPCC associated. The youngest uncle with colon cancer was my age at dx. Worth looking into.
For everyone on oxaliplatin - be sure that you are getting "pre-treated" with a calcium/magnesium injection. This helps reduce the neuropathy you will probably all experience in your hands and feet.
Although it isn't all that new (it's been reported in research for at least two years), it seems that a lot of oncologists aren't prescribing it for their patients on oxaliplatin. Be sure to check and make sure that you are getting this - and FYI, it has to be given PRIOR to the oxaliplatin injection.
Hannah
Although it isn't all that new (it's been reported in research for at least two years), it seems that a lot of oncologists aren't prescribing it for their patients on oxaliplatin. Be sure to check and make sure that you are getting this - and FYI, it has to be given PRIOR to the oxaliplatin injection.
HannahHannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27
calcium/magnesium
I have cal/mag infused pre and post oxaliplatin. I have completed 13 rounds of FOLFOX with 2 dose reductions. I feel that I have been able to tolerate Oxali with min. side effects, longer then others I have spoke to due to this pre and post treatment.
Wendy
Wendy
Last edited by Wendy on Sun Oct 22, 2006 11:53 am, edited 1 time in total.
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popcornkel
- Posts: 12
- Joined: Sat Oct 21, 2006 10:06 pm
- Location: Michigan
allergic reactions?
Nick,
I only received OXY for 6/12 treatments. I was experiencing the symptoms longer and longer post treatment as many have mentioned here, so my husband was doing research on whether I should continue, or whether the Cal/Magnesium would help. However, on my 5th and 6th treatment, I had severe allergic reactions after they started the Oxy.
I've been done with treatments all together since end of July. I find that my feet feel stiff and almost like they are asleep after I have sat for awhile, and I've wondered if that is a lingering neuropathy. Anyone else with that? My hand easily falls asleep as well, and I find I can't handwrite for very long.
I was wondering if anyone else ever had an allergic reaction? Mine was SEVERE head congestion, chest congestion, trouble breathing, hives, bright red face. At my clinic, we all sit together and other patients were staring at me with wide eyes - I guess it was quite a sight.
It was interesting to read that so many of you had the jaw pain with the first bite of something. My nurses had never heard of that before!
Kelley
I only received OXY for 6/12 treatments. I was experiencing the symptoms longer and longer post treatment as many have mentioned here, so my husband was doing research on whether I should continue, or whether the Cal/Magnesium would help. However, on my 5th and 6th treatment, I had severe allergic reactions after they started the Oxy.
I've been done with treatments all together since end of July. I find that my feet feel stiff and almost like they are asleep after I have sat for awhile, and I've wondered if that is a lingering neuropathy. Anyone else with that? My hand easily falls asleep as well, and I find I can't handwrite for very long.
I was wondering if anyone else ever had an allergic reaction? Mine was SEVERE head congestion, chest congestion, trouble breathing, hives, bright red face. At my clinic, we all sit together and other patients were staring at me with wide eyes - I guess it was quite a sight.
It was interesting to read that so many of you had the jaw pain with the first bite of something. My nurses had never heard of that before!
Kelley
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northern lights
- Posts: 127
- Joined: Tue Mar 21, 2006 10:48 am
- Location: Yellowknife, Northwest Territories
I have neurapathy, but it doesn't seem too bad. It really started about treatment 9 and gradually got worse. The tips of my fingers tingle and if I am in the cold, it spreads about half way down my fingers. I live in the sub-arctic of Canada, so this will be an intersting winter!!!
I had the same alergic reaction as you on the 12 round. What a way to finish!!! It was pretty scary, but I finished the infusion and NO MORE CHEMO!!!
Good luck
I had the same alergic reaction as you on the 12 round. What a way to finish!!! It was pretty scary, but I finished the infusion and NO MORE CHEMO!!!
Good luck
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