Is not doing chemo silly?

[Cherie]

Hi Everyone,

I am about to stat Chemo and I'm just exhausted. I have fought Crones disease for 16 years. The last three years my complaints have been ignored and my gastro doctor just kept me on the same drugs and sent me to a counselor as my fatigue was in my head. Last month I had had enough and switch doctors he immediately did the right tests and found cancer and then changed my diagnosis to Ulcerative colitis. Why my original doctor was not check for cancer I don't know. I saw him every six weeks for the last three years. So I'm pretty mad. Anyway...I have struggled so much with my health and I have just had enough I don't want the chemo and just don't feel the strength to do it. I know people with UC have a poor prognosis....am I being silly?

[Hall0731]

Cherie,

With your signature line, I would highly recommend doing chemo. With that many lymph nodes involved, you would greatly increase your chances of not having a reoccurance versus not doing any chemo. I was also stage 3 with 1 positive lymph node out of 225 and completed 12 rounds of folfox. I was able to manage thru it realtively easy. Everyone reacts different to chemo. You may have a easy time. I know it probably has been a daily struggle since having chron's disease is so much worse than UC. Please think about it and talk to your doctors. If it was me, I would do the chemo.

[skypup]

First, none of us can tell you what to do but we will support you in what you decide. Second, there have been several threads recently along this line. If you scroll through a few pages you will find them.

My question for you is this: are you really ready to not fight cancer with everything you've got? At stage 3 you still have a chance for a cure. Consider that this is coming from a person who has declined chemo at stage 4 -- but I did everything I could when I had a chance for a cure. If you go to the "mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING" thread and read some of our stories, it might motivate you to do what you can to minimize the chances of getting to where we are. I say this with sincere hopes that you do not join us with metastatic disease -- there is no good way out of that, and the chemo that you would do now is just a shadow of what might lie ahead.

Chemo is no fun, for sure, and it has lasting effects, but it is doable... many of us continued to work full-time through it (although getting as much rest as possible might be a good idea, too.)

[SoConfused]

no one can tell you what to do ... it's your choice whether to take the chemo or not; however, in your shoes, I'd definitely do the chemo. At stage IIIC, you are at a higher than acceptable risk for recurrence - I would not be able to live with myself if I skipped chemo and wound up with a recurrence. Good luck!

[slchapma]

I struggled with this decision as well. I had told myself for years after watching family and friends endure chemo and the after effects that I would never do it if I was diagnosed. Well never say never I guess. After my resection and reading the posts on this forum along with multiple long talks with my oncologist, I decided that doing the chemo was for me the best option. If I hadn't had 6 lymph nodes affected I would not have done it but the fact that there could be microscopic cancer cells floating around and I have the opportunity to potentially kill them and prevent a recurrence I decided to do the chemo. I will tell you it's no picnic but it's also not as bad as I thought. I had a bad week after my third round but still doable. I would say read as much as you can, talk to your family and friends, and discuss all available options with your onc. Ultimately it is YOUR decision and you will be supported which ever direction you choose. It all comes down to your gut instinct (pun intended...LOL).

[Ashlee H.]

Please realize none of us want to do chemo. You might be surprised it's not as bad as TV/movies make it. Sure, I've had problems, but we've tweaked it over the years so I was able to continue to work full time. I've never thrown up, never lost weight. You do have to change your normal and get more rest. My first 3 years I did everything possible to cure my cancer. Twice we thought I was there...but the darn cancer keeps coming back. So, now I call the shots. I take long chemo breaks. I decide if I go back on the chemo and what combo of chemo. I hope you do decide on chemo, and if you do, there are a lot of people here that can help with the potential side effects. My first time with chemo - I actually took a trip to Paris 1/2 way through my treatment - so don't think you'll be curled up in a ball, miserable all the time, if you choose to do chemo. And just think...if the chemo knocks out the remain micro cancer cells and you never have to deal with cancer again - now wouldn't that be worth it for 6 months of chemo?

[raym]

Along with what others have responded, you should start the chemo and see how it goes. The dosage can always be adjusted to alleviate some of the symptoms. And it if gets to be too much you can always stop.

[tchan8888]

My two cents. Given you are Stage III, I would do ANYTHING to avoid any spread. I just looked at chemo, especially because I had no choice, as my new job. Focus and finish. Good luck on your decision.

T

[mstults]

I don't have a lot to add other than considering what you've already been through chemo could actually be easier. Your body is probably tired. You will be helped to restore some of what it needs while on chemo if you take care of yourself and have a good medical team. While it has its side effects, most first line chemo used for colon csncer is less harsh than for other cancers. Your first decision, the one you are considering is chemo or no chemo. If you say no up front that is a decision you will have to live with and regrets are highly likely. If you say yes that opens a new door with new decisions. And you csn stop or make adjustments at any time with the risk of no or few regrets. And don't make the assumption that your csncer team will be like the doctors you have been dealing with. You deserve better. Demand it. Listen carefully to your family. I bet I know what they are suggesting. Whatever you do the decision is yours. Just make it an informed one. Once it's done then move forward to implement it. We are here to help whatever that may be. Best of luck.

[Cherie]

Thank you all for the encouragement. I am quite depressed right now. I am four weeks out from my colectomy and I still in a lot of pain. I thought I would feel better than I do. I guess this is a big factor in not wanting to do chemo, I just don't want to add to existing suffering. However I see I am being silly and I will do it thanks to all your encouragement.

[justin case]

How shall I answer this? I was diagnosed a 2a, I thought no problem, maybe I can just have surgery Then I learned a little bit more, as I had 2 tumors, 1 in the sigmoid and 1 in the rectum, and I thought, why go through surgery, when I can just do chemo Then I learned the chemo recommended (MIGHT) get me healthy without surgery, but may damn well kill me anyway So, I did some chemo, some radiation, some soul searching , and then had surgery and more chemo Well that worked and I am supposedly done. Granted, it was the most unpleasant 1 1/2 years of my life, but I could have just said F*** it, and been in a world of problems by now! It is your choice! I understand the pain of advanced cancer, is not an adventure on which I would want to embark
Regards,
Michael

[mstults]

Thank you all for the encouragement. I am quite depressed right now. I am four weeks out from my colectomy and I still in a lot of pain. I thought I would feel better than I do. I guess this is a big factor in not wanting to do chemo, I just don't want to add to existing suffering. However I see I am being silly and I will do it thanks to all your encouragement.

Cherie, make sure you are doing it because you are committed. Not because someone including me told you that you should. You need to feel good about the decision.

[kiwiinoz]

I have a really good friend that has been suffering from Chron's for 20 odd years and has had 2 colon resections for it in the old "zipper" format from his rib cage to his groin.
I see that he has to be really careful in what he eats or he ends up in hospital to have a colonoscopy where they inflate his bowels again with a balloon which he has done 3 times this year already.
I am doing chemo (folfox) now and it is not as bad as I thought. I still work every day, even the infusion days. I feel tired for 4-5 days after the infusion but not badly so. I feel normal on the off weeks.
Doing chemo is giving yourself an extra insurance policy to try to stop spread so you don't get to stage IV like a lot of us.
You have a chance at a cure, and I encourage you to stop feeling so down and to switch your thinking around so that you see it as part of the "cure" rather than part of the illness. I don't mean to be negative towards you but you have a shot a a cure when others don't have that chance. Please don't throw it away because you are down on yourself of you could come to regret it.
Good luck in whatever you choose.

[dianetavegia]

Since the 5FU affects all moist areas, including the colon, vagina, mouth/ throat, eyes, bladder, etc.... Talk with your gastro and onc about how that portion of FOLFOX might affect your UC. They're the professionals and have probably run across this before. I have a friend with Crohn's Disease who takes a form of chemo every two weeks to keep her disease in remission. It's given her her life back.

Best of luck! I took chemo (Stage IIIB with less node affected) and had 3 years clear. Chemo wasn't THAT bad. I never thew up. Never had diarrhea. Was tired and weak toward the end but not anything like I expected.

[curious56]

Cherie, I have an autoimmune, too.......neuromuscular.

I tried chemo and couldn't handle it -- sent me into a major exacerbation.

I cannot/will not tell you what to do. This is YOUR life -- and you are your OWN best expert. However, I will point out that chemo is not a commitment.......no contract signed. You can QUIT at any time.

Drat, Crohn's is rough enough. NOT fair, just NOT fair!!

NOTHING you are thinking or doing is silly. You are doing the very best you can with the hand you've been dealt!!!

Praying!