Treatments for Metastatic Rectal Cancer
Comments
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Folfox
Hi Liz and welcome to the board! Sorry you had to find us and glad you did plus congrats on your 3 yr survivorship!
I was dx 5/08 with stage 4 rectal cancer; 1 met to liver and no family history as well. Been through radiation 28 tx xeloda/oxaliplatin 6/08, LAR 9/08, R hepatectomy 10/08, and then adjuvant chemo FOLFOX 10 tx 1/09-5/09. Glad to hear Folfiri was no picnic and you were able to work through it. I've been enjoying a chemo holiday since 5/09 but looks like chemo, likely Xeloda and maybe Folfiri is in my near future with the appearance of lung mets on my last scans. FOLFOX was no picnic for me either but I was able to work through it and had minimal side effects. Neuropathy never was greater than Grade 1 on feet (right after I ended chemo) and has been diminishing ever so slowly since. Now only on the bottoms of my feet with tingling sensations and diminished sensitivity. No balance issues now. Actually can be a bit more painful as it heals (little shooting pains). Never lost my hair. Gained weight (25 lbs) rather then lost it (slowly working at losing that now.) I had the jaw spasm, sensitivity to cold liquids though not bad, fingers touching cold car handle doors was awful (only did that once and it was winter in WY and it was around zero). Had to be careful while walking with a cold winter wind blowing (could make my eyes, lips etc feel cold and very stiff).
I worked with my anthroposophical/internal med doc, naturopath and acupunturist to take supplements to diminish chemo side effects such as subcut mistletoe, and L-glutamine specifically for oxaliplatin side effects. My oncologist was aware and supportive though not familiar with the details. This Sloan-Kettering website was helpful for herbs and chemo drug interactions: http://www.mskcc.org/mskcc/html/11570.cfm
Again welcome!
Leslie0 -
Welcome Liz!
Welcome to this fantastic forum; I hope you will find it helpful. I am currently on folfiri+ aavastin, but my last scan showed some prgression in my liver, so I may be switched to follfox + avastin. It is hard to switch treatments when you have tolerated one well, as you have, but I guess the cancer cells get used to one thing + need a switch every now + again. Good luck!0 -
Hey Liz - Thanks for sharing
Hey Liz - Thanks for sharing your story. Don't sweat the scary folfox stories. The stuff is nasty, but it obliterated my cancer. I had 12 treatments that ended last Feb. I had surgery in April. While I recovered from surgery, the cancer spread to my lungs and progressed in my liver. I've now had 2 treatments of folfori. You're right - It's no picnic. I hope I can "work through it" like you did.
Don't be afraid of new treatments. The intensity of the neuropathy and cold sensitivity varies from person to person. It can be permanent, but for most folks it slowly fades away. I still have some neuropathy, but it is getting better.
I like Catherine's question. Is surgery an option? If not - Why?
Take care - Roger0 -
Surgery no optionCrow71 said:Hey Liz - Thanks for sharing
Hey Liz - Thanks for sharing your story. Don't sweat the scary folfox stories. The stuff is nasty, but it obliterated my cancer. I had 12 treatments that ended last Feb. I had surgery in April. While I recovered from surgery, the cancer spread to my lungs and progressed in my liver. I've now had 2 treatments of folfori. You're right - It's no picnic. I hope I can "work through it" like you did.
Don't be afraid of new treatments. The intensity of the neuropathy and cold sensitivity varies from person to person. It can be permanent, but for most folks it slowly fades away. I still have some neuropathy, but it is getting better.
I like Catherine's question. Is surgery an option? If not - Why?
Take care - Roger
Surgery is not an option per my oncologist as I have mets in the lower lobe of my right lung and the upper lobe of my left lung. She said too many for successful surgery. Plus they can't remove so much of my lungs. I am ok with that, I am just really nervous about the neuropathy as I type, use the phone and adding machine as part of my job and I live in WNY where the winters can sometimes be really cold. Thanks so much for adding to my board. This is new to me but I figured the best place to talk to people who have been or are going through what I am.0 -
supplementslesvanb said:Folfox
Hi Liz and welcome to the board! Sorry you had to find us and glad you did plus congrats on your 3 yr survivorship!
I was dx 5/08 with stage 4 rectal cancer; 1 met to liver and no family history as well. Been through radiation 28 tx xeloda/oxaliplatin 6/08, LAR 9/08, R hepatectomy 10/08, and then adjuvant chemo FOLFOX 10 tx 1/09-5/09. Glad to hear Folfiri was no picnic and you were able to work through it. I've been enjoying a chemo holiday since 5/09 but looks like chemo, likely Xeloda and maybe Folfiri is in my near future with the appearance of lung mets on my last scans. FOLFOX was no picnic for me either but I was able to work through it and had minimal side effects. Neuropathy never was greater than Grade 1 on feet (right after I ended chemo) and has been diminishing ever so slowly since. Now only on the bottoms of my feet with tingling sensations and diminished sensitivity. No balance issues now. Actually can be a bit more painful as it heals (little shooting pains). Never lost my hair. Gained weight (25 lbs) rather then lost it (slowly working at losing that now.) I had the jaw spasm, sensitivity to cold liquids though not bad, fingers touching cold car handle doors was awful (only did that once and it was winter in WY and it was around zero). Had to be careful while walking with a cold winter wind blowing (could make my eyes, lips etc feel cold and very stiff).
I worked with my anthroposophical/internal med doc, naturopath and acupunturist to take supplements to diminish chemo side effects such as subcut mistletoe, and L-glutamine specifically for oxaliplatin side effects. My oncologist was aware and supportive though not familiar with the details. This Sloan-Kettering website was helpful for herbs and chemo drug interactions: http://www.mskcc.org/mskcc/html/11570.cfm
Again welcome!
Leslie
Glad to hear that you had a doctor that encouraged supplements to combat the side effects. Mine doesn't seem to impressed by them. I am just workied about losing the ability to type, since I do alot of computer work, and use the phone and calculator alot at as well. Thanks for your response, this is new to me being on this website but again where better to go that to people who have been there themselves.0 -
FolofxAnneCan said:Welcome Liz!
Welcome to this fantastic forum; I hope you will find it helpful. I am currently on folfiri+ aavastin, but my last scan showed some prgression in my liver, so I may be switched to follfox + avastin. It is hard to switch treatments when you have tolerated one well, as you have, but I guess the cancer cells get used to one thing + need a switch every now + again. Good luck!
Looks like we may be experiencing the new treatment together. I find out for sure on Wednesday.0 -
Yeah, I had minimal hairpepebcn said:l been 12 rounds of Folfox , side effects not far from
fofiri where lm now! only neuropathy but manageable !
No loose of hair! LOL.
Yeah, I had minimal hair loss at the beginning with Folfire but my last round which lasted 9 months I broke down and got a wig. I didn't like it but I managed. I guess that is one positive thing about folfox!0 -
FOLFOX side effectsCooper503 said:Surgery no option
Surgery is not an option per my oncologist as I have mets in the lower lobe of my right lung and the upper lobe of my left lung. She said too many for successful surgery. Plus they can't remove so much of my lungs. I am ok with that, I am just really nervous about the neuropathy as I type, use the phone and adding machine as part of my job and I live in WNY where the winters can sometimes be really cold. Thanks so much for adding to my board. This is new to me but I figured the best place to talk to people who have been or are going through what I am.
Hi Liz,
I'm new here too. I had 8 FOLFOX treatments out of 12 and finished with Xeloda. I don't have any neuropathy in my hands and very minimal in my feet. Feet only bother me when I've been standing all day, but no problem walking or anything. I didn't take any supplements, the only thing I did was wiggle my fingers and toes a lot LOL, really though, so it might have helped.
The reason I didn't finish all 12 treatments was because #8 really kicked my butt. My throat swelled up and I could barely catch my breath. After that wore off (in about 10 minutes) I spent the next week in bed, couldn't eat couldn't drink couldn't keep the anti-nausea meds down even. Ended up at the hospital for a day getting fluids in an IV and that brought me back, but the doctor said that's enough Oxaliplatin. Up until then it wasn't too bad, just tired and taste buds were messed up. You will probably be just fine on FOLFOX, not many people have reactions like I did.
Best of luck to you!!!
Viv0 -
typing was not a problem for meCooper503 said:supplements
Glad to hear that you had a doctor that encouraged supplements to combat the side effects. Mine doesn't seem to impressed by them. I am just workied about losing the ability to type, since I do alot of computer work, and use the phone and calculator alot at as well. Thanks for your response, this is new to me being on this website but again where better to go that to people who have been there themselves.
the neuropathy stayed focused in my feet. Good luck!
Leslie0 -
I, also, am Stage IV rectal
I, also, am Stage IV rectal cancer. Diagnose at 42. I'm about 2 1/2 years out. Chemo/rad then LAR, FOLFOX x 12, mets to lungs, 5FU + Avastin which showed minimal growth, now Irinotecan and Vectibix. Folfox was hard for me. I did it over the winter in Maine, a cold winter. Had to cover my mouth with a scarf. Neuropathy in fingers and toes that has since gotten better. Low WBC so had to go on Neupogen. I was able to continue to work. I don't remember trouble with the computer. I always figure that I do what I have to do to survive. However, quality of life is important to me and my doctor. I am now looking for stable progression or shrinkage of the mets to my lungs. I too am not a candidate for surgery as I have mets in both lungs in variable places. It's ok to be afraid of new treatments. Realize that you can get through it and be okay. Good luck to you!
Hugs
Valerie0 -
Is your Oncologists the only one in practice.....Cooper503 said:Surgery no option
Surgery is not an option per my oncologist as I have mets in the lower lobe of my right lung and the upper lobe of my left lung. She said too many for successful surgery. Plus they can't remove so much of my lungs. I am ok with that, I am just really nervous about the neuropathy as I type, use the phone and adding machine as part of my job and I live in WNY where the winters can sometimes be really cold. Thanks so much for adding to my board. This is new to me but I figured the best place to talk to people who have been or are going through what I am.
I understand how getting to another opinion may be but do you not feel the need to look for another opinion somewhere in another state ? Its hard to justify what answer a question may get from an oncologist...I would let a Thoracic surgeon tell me I was inoperable, and if he/she did then I would have another tell me, and if he/she did then I might say well that is that, but not one the prognosis of 1 Oncologists.0 -
weird but OK
Hi. I'm on Xeliri now but have had FOLFOX previously. The side effects can be weird -- and a little unpleasant. But, they vary from person to person. Mine was not too bad. I continued working. The peripheral neuropathy i had disappeared completely after I stopped the chemo. It is "do-able". And less hair loss!
Tara0 -
Folfox, it was okay. ItaraHK said:weird but OK
Hi. I'm on Xeliri now but have had FOLFOX previously. The side effects can be weird -- and a little unpleasant. But, they vary from person to person. Mine was not too bad. I continued working. The peripheral neuropathy i had disappeared completely after I stopped the chemo. It is "do-able". And less hair loss!
Tara
Folfox, it was okay. I worked through the whole thing and only started to feel REALLY RUN down that last couple MONTHS. I do have neuropathy to the feet and hands/arms.0 -
First Folfox TreatmentNana b said:Folfox, it was okay. I
Folfox, it was okay. I worked through the whole thing and only started to feel REALLY RUN down that last couple MONTHS. I do have neuropathy to the feet and hands/arms.
Hi Everyone,
Thanks for all of your support and kind words. I did start on Folfox today and thank God I haven't had any awful side effects yet. I know it is only day one and I have many more treatments to go but for each day I get through with no problems I am greatful. Feel a little queasy but that is about it. Back for part two tomorrow. Will keep you posted.
Liz0 -
hope it works for you...Cooper503 said:First Folfox Treatment
Hi Everyone,
Thanks for all of your support and kind words. I did start on Folfox today and thank God I haven't had any awful side effects yet. I know it is only day one and I have many more treatments to go but for each day I get through with no problems I am greatful. Feel a little queasy but that is about it. Back for part two tomorrow. Will keep you posted.
Liz
Get something for the sores in the mouth that every is talking about, and you may ket...it's good to have it in the fridge anyhow...0
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