Rich469 wrote:My diagnosis started last May 2016 when I was sitting with my girlfriend and farted. At that moment I thought it was a shart.. lol. I went to the bathroom and discovered a large blood spatter in my underwear and when I went to the bathroom the water was red with blood. 2 weeks later during a colonoscopy they discovered a golf ball sized tumor at the top of my rectum. An initial biopsy came back pre cancerous, but due to the size of the tumor it had to be removed. After surgery the tumor was biopsied and came back positive. 6 weeks of Radiation and carrying a pump with 5-FU 7 days a week, then a colon resection surgery followed in December. I now have a temporary colostomy bag and just finished my 4th treatment of chemo with 8 to go. My chemo consists of an IV of Oxaliplatin and 2 days of 5-FU on a pump. The side effects of the Oxaliplatin are horrendous with very bad cold sensitivity in my fingers and throat which are getting worse and seem to be more permanent. Anyone else doing or have done a similar treatment? It seems a bit excessive to me as I had 1 lymph node come back positive after surgery but my PET scan showed no spread of cancer. I am seriously considering stopping the chemo after a couple more treatments and exploring alternative methods of treatment.
PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.
peanut_8 wrote:PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.
Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut
TXLiz wrote:
My neuropathy never really leaves now, in my hands, fingers, and feet. I have been getting "electric shocks" in my feet and legs. It's annoying and makes me feel crazy but I have to fight this.
Rich469 wrote:>> Anyone else doing or have done a similar treatment? It seems a bit excessive to me as I had 1 lymph node come back positive after surgery but my PET scan showed no spread of cancer. I am seriously considering stopping the chemo after a couple more treatments and exploring alternative methods of treatment.
peanut_8 wrote:PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.
Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut
PainInTheAss wrote:peanut_8 wrote:PainInTheAss wrote:I would get a second or third opinion about how many rounds you should get. It originally was 24, but trials found 12 just as effective. Then 8 was found to be as effective as 12. Later, 6 was found to be as effective as 8 (I did 6). I saw some patients in the last few years who only did 4 or 5 rounds. Standard treatment is changing but many Oncs do not keep up with or seem to trust the new trial data.
Hi PITA,
This is interesting, and valuable to many Colon Clubbers. Do you have a link to a medical study where this was validated?
Thanks,
peanut
Not anymore, but I did find some when I was going through chemo just by googling.They seem to continually do trials with fewer rounds, but it takes years to get the results and even longer for the data to be widely accepted. Many Oncs are still doing 12 rounds. I found it very interesting to learn that many studies will include patients who only did one round in the stats. Eventually, standard treatment may only be one round.
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