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So much for my good karma... now my doc wants to do 12 cycles...

polarprincess
Posts: 210
Joined: Aug 2008

i got talking about this on someone else's thread and didn't want to hijack it so thought i would start this one. I was a T1 cancer with 1 node of 26. Cea of 0.3 and moderately differentiated so considered low risk for recurrence according to mayo docs. I would have been stage 1 had it not been for the lymph node..however i ended up stage IIIa. So i was recommended to undergo chemoradiation with systemic chemo alone for 4- 6 months. I have not been able to get an answer by any docs of how they know to do 4 or 6 except they have said your body will tell us when it's time to stop. From most other people in my stage that i have talked to in my stage..if they got radiation then they only got 8 rounds of fulfox. The people that had higher lymph node involvement typically get the 12 rounds plus the radiation. so anyway.. first my doctor wasn't going to do fulfox at all and she was going to do BOLUS chemo which is old.. because she said fulfox was for the big cancers..but we decided to do it anyway and i was set up for 8 rounds of fulfox. my last one was supposed to be be feb 23rd which would mean i am officially done on march 8th. My birthday is march 9th so i thought that sounded like really good karma!

The fulfox hasn't worked out so great so basically what i have gotten so far is 2 cycles of full fulox, then chemoradiation but i was taken off the chemo for 2 weeks of the radiation because of sores that were not healing. The first treatment post radiation was given to me at a 30% reduction of fulfox plus i didn't get any leucovorin. the next cycle i got the full treatment of oxi and 5Fu but with fusilev in place of leucovorin. next treatment was 10% reduction of oxy. Next treatment was 5fu and leucorin only as was my treatment yesterday, and is the plan for the next treatment as well, and then she plans to go full force back on the fulfox for the last 2-4 treatments. So we have gone from 8 treatments to now doing 10 to 12. I guess since i have had so many treatments without the full doses, i am ok with it, and i am doing great on the 5fu only..it doesn't even feel like i am getting chemo, but am disappointed that i am not going to be done when i thought. She keeps telling me this is overkill, so why is she doing it then? Especially when i had radiation as well. MSK has a calcuator on their site for colon cancer and when you punch in all your info it gives you a prognosis and 5 year disease free survival at 5 years. when i punch in my info it gives me 96% chance of being disease free at 5 years and 97% if i do chemo... so am i doing all of this for 1%? it seems crazy!!

I am so torn, i feel like just saying at the next treatment this is it... but then maybe i would regret it one day... i just don't know!! I question whether she knows what she is doing sometimes.. as i have mentioned in other posts.. she keeps saying to the colon cancer patients that 14 treatments is the standard..where would she be getting this from? It has always been 12 as far as i have ever known. what would you do ?

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

This is a decision only you can make, but from where i'm sitting, 1% doesn't justify the crap that is chemo! For me, only getting a 2.5 reduction in my CEA doesn't justify returning to traditional chemo. And heck, if I had a 96% chance of beating this disease I'd be dancing in the aisles!
mary

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

At least that is what I would do. Like the other person said, only you can decide, but maybe you need to sit down with this doctor, and just be like what the H__L?? I would just stick to the original plan. That is what I would do.
Just tell her that is what you want to do and that your quality of life is important to you. Sounds like you have a great prognosis. IMO 1% of difference is not worth the trip.
Take care,
Susan H.

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

I was also stage III, one very small positive polyp on my baseline colonoscopy, then 1 positive node. I underwent, back then, 6 months of 5 FU and leuco only. Oxaliplatin was just coming out of trials, and my onc did not want to use Camptosar (Sp?) as he thought that would be "overkill". Don't know if it is still used. I was not as lucky with side effects; the fatigue was terrible, and I spent the last 3 months on medical leave.
I had just lost my dad to metastatic colon cancer a few years earlier, at age 85, and was ready to do everything I could to hit those cells that might have escaped the knife. Can you have a consultation appt with your onc between scheduled treatments to allow time to talk this through? I also found chemo days to be too packed to allow for any involved discussions. Best of luck with this tough call. Judy

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Tough call

polarprincess
Posts: 210
Joined: Aug 2008

thanks for the responses..i do get a chance every other week to discuss this with my oncologist and every time she changes the plan. I did have a chance to discuss it with a mayo clinic oncologist and 2 online oncologists as well and no one can give me a good answer on what to do. Since i handle the 5fu by itself so well, i imagine it won't be the end of the world if i have to keep going on that..but the thought of doing any oxy again..that is what is the hardest on me.. i could not bear to end up with long term neuropathy from that drug for such little benefit... it is so hard to know what to do.. if i get a recurrence, and don't do the 12 rounds then i will always wonder if that was why...but on the other hand.. too much chemo can have long term effects on the body as well and since i have already been through radiation as well..how much can a person take for 1 stupid lymph node? I really struggle with this especially because i had symptoms for a long time and could have avoided this nightmare... such a shame i was too embarrased to talk about it because i sure have no modesty left now!!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

i hear your comments so close to my heart. When I was first diagnosed, I was stage IIIB, 3 of 27 lymph nodes involved. Did the 6 months chemo, started out with FOLFOX but had to stop it after 3 treatments due to muscle spasms and we continued with 5FU and Leucovorin. At the time, I was thinking, 3 lymph nodes, the surgery got everything, it's just not worth it to possibly lose normal function in my hands since I program computers for a living. Now, after a recurrence and now a possible second recurrence, I am wondering if I shouldn't have just toughed it out a bit longer on the oxaliplatin; seems to some extent the muscle spasms might have become more tolerable and there may not have been permanent damage. At the time I had no idea of the true nature of this beast and I think I was just way too naive! Don't get me wrong, I firmly believe everything happens for a reason and our lives are what they are because of a string of decisions and processes that occur throughout our life times. I don't regret my past decisions, even ones made earlier in my life that may have set me up for this battle; I don't believe in regrets. Different choices can be made and who's to know if THAT alternative reality would have been better or worse. It is what it is... That's not to say i wouldn't jump at a chance to jump in a time machine and go back to a time where I could have had a colonoscopy done when my tumor was still in pre-cancerous polyp stage (yea, at 30 and very healthy, I would have had to do the colonoscopy myself... ok, medical school to become a gastroenterologist!). I made my decisions and my life has moved on. I am sure you feel the same way, you are just trying to make that one decision in a way you can live with it; I applaud you and pray you come to peace with it soon.
mary

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