Colorectal Cancer Stage 3C In remission but having a lot of permanent side effects

Has anyone heard of reversing the take down and getting a colostomy bag?  My husband has been in remission for about 21/2 years, however the side effects do not and they say now, will not ever go away.  Neuropathy, 6-20 BM's a day, extreme joint pain, tired, loss of energy, ED and recently loss of weight.  We are going to see a new Oncologists and a Colorectal Surgeon next week here in Arizona. (we are from Mpls.) Thanks for any help!  Marty and Lori

You're in Minneapolis?  Have you been to the Mayo Clinic?  I wouldn't know what my feelings are exactly on that place though...they gave NO hope to my Dad (stage 4 colon cancer diagnosed April of 2008).  I would say if he's having some increased symptoms you are very smart to get a new fresh set of eyes to take a look at your husband.  I hate to say it but things can change so quickly with this horrible disease.  Not to say he's not still in remision but anything that changes or starts to worsen should be looked at.  You'll never regret having checked with anyone and everyone you could have.  Let us know how it goes with the new oncologist.  Good luck to you! 

 

On 7/15/2009 HIGH STRUNG DAUGHTER wrote:

You're in Minneapolis?  Have you been to the Mayo Clinic?  I wouldn't know what my feelings are exactly on that place though...they gave NO hope to my Dad (stage 4 colon cancer diagnosed April of 2008).  I would say if he's having some increased symptoms you are very smart to get a new fresh set of eyes to take a look at your husband.  I hate to say it but things can change so quickly with this horrible disease.  Not to say he's not still in remision but anything that changes or starts to worsen should be looked at.  You'll never regret having checked with anyone and everyone you could have.  Let us know how it goes with the new oncologist.  Good luck to you! 

No, we are not in Mpls anymore.  My husband had a great tem of doctors within the HHH in Fridley, MN  Due to all of his side effects, mostly the being cold all of the time.  The doctors all agreed it was time to go where it is warm.  So here we are in Arizona.  Loving it,but, as I said things are changing.  We do have these apmts coming up, so hopefully it will reveil some answers for us.  My father was at the Mayo with Bone Cancer, and there wasn't much they could do for him either,  He past away in 1995.  Thank you for responding to my email.  I will email after the Pet and the new Oncologists, and Colorectal Surgeon.  God Bless!

Hi Lori,

I know of one woman who had her takedown reversed with a permanent coloctomy due to intolerable side effects some time after her procedure was completed.  She was not able to work or have a social life due to multiple trips to the bathroom.  She was very pleased with her decision to go ahead with the colostomy.

My husband has the same symptoms that your husband has but he is an elderly gentleman and is unwilling to even consider a colostomy.  He would rather spend most of his life in the bathroom, have a sore butt all the time and wear diapers 24/ 7 than even talk about a colostomy.  Men of a certain age and generation have a lot prejudices that some of them are just not able to overcome.

I would urge your husband to further consider the permanent colostomy because it will help him and you as well.  You can both have a normal life again.  My hairdresser's husband has had a colostomy for many years, due to colitis, and he lives a completely normal life.  He swims, golfs, plays softball and does whatever he wishes.  So it is possible!

Good luck to you both.

Joan L

 

On 7/15/2009 ytram wrote:

Has anyone heard of reversing the take down and getting a colostomy bag?  My husband has been in remission for about 21/2 years, however the side effects do not and they say now, will not ever go away.  Neuropathy, 6-20 BM's a day, extreme joint pain, tired, loss of energy, ED and recently loss of weight.  We are going to see a new Oncologists and a Colorectal Surgeon next week here in Arizona. (we are from Mpls.) Thanks for any help!  Marty and Lori

 

Hello,

 I cannot answer the question you ask but I do have a suggestion.  Glutamine for neuropathy....you will find it at a GNC like store.  I had severe neurop. during FOLFOX and lived in a cold environment then.  I tried the powder first but it upset my already sensitive stomach.  I switched to the horse pills (would take about 5-8 on first day but consult with a nutritionist or doctor) and I had almost NO neuropathy.  It is a supplement that many weightlifters use so it is not dangerous.  I was able to reach in the fridge for stuff without gloves, that is how well it worked.  I hope this helps.

 

On 7/15/2009 ytram wrote:

Has anyone heard of reversing the take down and getting a colostomy bag?  My husband has been in remission for about 21/2 years, however the side effects do not and they say now, will not ever go away.  Neuropathy, 6-20 BM's a day, extreme joint pain, tired, loss of energy, ED and recently loss of weight.  We are going to see a new Oncologists and a Colorectal Surgeon next week here in Arizona. (we are from Mpls.) Thanks for any help!  Marty and Lori

 I was 38 yrs old when diagnosed with advanced StageT3 N1 with no prior family history. I was the "healthy" one in the family biking 12 miles a day and a low fat diet. My tumor was low 6.5 cm up only leaving 2 cm with which to work. I went to Mayo Rochester because the world's leading surgeon is there and am so grateful I did.

I completely understand how your husband feels. My neuropathy turned out to be MS...great, right. So MS has become my focus this past year after being two years since completion of my cancer treatment.

After my reversal, I was ready to say, change it back. However, I am so glad I did not. I called Mayo for help and while I still struggle I've just learned to adapt.

Diet is the key. I know that when I'm going out to dinner or doing something active I'll need to be prepared. I may take 2-4 immodium and things are usually fine. I avoid spicy, sugary or fatty foods which all seem to trigger crazy episodes. I eat a diet high in fiber without as much liquid to slow things down. I avoid raw vegetables and oily food...also triggers...for ME.

I also started following a macrobiotic diet which is basically no processed foods (hard from a time management perspective), rich in brown rice, lightly cooked greens, lentils, and beans. I obviously go easy on the beans but it seems to work.

This doesn't mean that I don't carry around a change of underwear in my bag, or don't use cottonelle flushable wipes. I do. It's life. It's frustrating but all in all life is good.

Having said all that, he has to do what is right for HIM. I met a man with the same cancer, same tumor location as mine at a Relay for Life event. He was shocked that I didn't have a bag because our tumors were so low. The difference made by a fantastic surgeon! He was miserable. I am not. 

Grateful,

Deb

 

 

 

I'm laughing because when I first found these boards looking for help, I called myself BATgirl...Big Ass Tumor girl. :-) I am not anymore.

One more thing...you may want to try acupuncture. I've been going weekly for the MS, but wow, what a difference it makes. I wish I would have done that when I was doing chemo. Trust me, the MS meds made me feel like I was doing chemo so I quit.

However, you try to find a good acupuncturist in your area because it can help so many different things.

Good Luck!

 

My husband is on this third round of 12 using Flofox.  He is having side effects I guess we weren't really expecting, about the second or third day following the treatment he gets severe bowel problems, having to take 3-4 lomotil a day, he is also having huge mood swings he is usually a very calm and compassionate person, luckly the outbursts are with me and not the grandchildren/children, is this normal though.  He is insisting on working 40 hours a week which really worries me, he is so tired, dark circles and weak, everyone tells me to not push the issue when his body demands him to stop HE WILL.  His tumor was 13 cm (size of a football) they had to remove 1/3 of his stomach, he has alot of trouble eating but still loves his sweets.  Again, is this normal, I just don't know what to expect...

 

On 7/15/2009 ytram wrote:

Has anyone heard of reversing the take down and getting a colostomy bag?  My husband has been in remission for about 21/2 years, however the side effects do not and they say now, will not ever go away.  Neuropathy, 6-20 BM's a day, extreme joint pain, tired, loss of energy, ED and recently loss of weight.  We are going to see a new Oncologists and a Colorectal Surgeon next week here in Arizona. (we are from Mpls.) Thanks for any help!  Marty and Lori

 

I can relate to your husband's continued side effects.  I was diagnosed with colorectal CA in Oct. '06 and underwent radiation, chemo, surgery, and more chemo.  My tumor was just 2 inches from the anal verge, but the surgeon was able to resect there even though it was the "lowest" resection he had ever done.  I was thankful not to have a colostomy and have learned to manage my side effects (which may be different from his)

1)  I have to completely avoid caffeine and spicy foods; and go light on all dairy foods.  Can't eat much fiber.  Take probiotics 2x daily.

2)  I keep Opium Tincture with me at all times.  The rx is written for 0.6ml up to 4x daily for diarrhea.  I rarely have actual diarrhea, but easily can have 10-20 BMs daily and if they are in rapid succession, they cause severe burning pain internally where the resection was done.  I only need the Opium Tincture about 3-4x a week but it's the ONLY thing that will slow down my GI system when it gets overactive.

3)  I also have to take Hydrocodone/APAP 5/500 2-3x daily for the pain in the coccyx area that feels like a broken tailbone all the time.

4)  I take Neurontin 300mg 3x daily for the nerve pain in the pre-sacral area where alot of tissue was removed and some nerves damaged.  This was like a miracle drug when we finally tried it--until then I would describe the pain as feeling like someone set a shoe on fire and pushed it up inside me (really that bad).

5)  Lying on my side when I can at intervals during the day helps, too.  It seems that gravity is not my friend and sitting for long intensifies the pain.  I also pray fervently throughout the day.

I have to work full time (as a hospice nurse) to support myself so I can't use some of the remedies until the afternoon, but I am thankful for them so that I can be comfortable enough to rest and return to work the next day.  I'll keep you both in my prayers for wisdom.  Please update when your husband has seen the new docs.