Crohn's, Cancer, Life

I've looked at this forum on and off for years, but have decided to join today to share and receive information...

My story made short:
Dx in 1990
Resection in 1994
Every Rx available from 1990 to 2010
Total remission 2010-2012
Small Bowel Adenocarcinoma (aka SBA) (relatively rare cancer) 2012
12 Round of FOLFOX Chemo 2012
Clean MRI 2012

Joined the forum for several reasons:
1. Looking for the best GI possible on the East Coast
2. Interested in LDN resources
3. Interested in SBA experiences
4. Looking for diet/nutrition resources

Few noteworthy items:
1. I had asked my GI repeatedly about cancer risks and Crohn's. He repeatedly said, "no, you don't have to worry about that." The black/white literature actually is well documented that after 20 years of Crohn's a person's lifetime cancer risk is 30x the normal population (normal lifetime risk is about 2%).
2. I thought the massive lump in my gut was scar tissue. It was golf ball sized mass. Nobody even suggested this as a possibility. So, keep that in mind.
3. Have recently become hyper-aware of GMO's (near death experience will do that to you). I am now significantly avoiding processed foods like crackers, microwave meals, cookies. Pleased to report I'm 6-months soda-free. The old adage, you are what you eat is probably more true than what we like to believe.

Anyway, if you've have similar experiences and/or knowledge, would appreciate input, thoughts, suggestions, etc.

Regards.

Hi Tom,

Welcome! I have been doing my own research lately wrt the link between crohn's and cancer and have found many journals that show evidence of crohn's putting and individual at higher risk.

Hello Tom and welcome to the forum

I am sorry to hear that you have had to go through so much recently but am certainly glad to hear about the clean MRI. With regards to LDN I have not been on this myself but we do have a sub forum for this that is worth having a look at: http://www.crohnsforum.com/forumdisplay.php?f=32. Is this a med that has been mentioned to you specifically treatment wise? We also have a doctor review section where someone might have some info about good docs on the East Coast: http://www.crohnsforum.com/forumdisplay.php?f=79. With regards to diet there are a fair few who have looked into this area, I am tagging Gianni as I believe he has some info in this area, then there is the diet and sups sub forum that will have some info as well: http://www.crohnsforum.com/forumdisplay.php?f=17.

There is plenty of helpful info and support here for you so do have a good look around.

AB
xx

I was never oficially dxed with crohns but the gps told me I had ibs from an early age. At 48 I had a scope that could not make it past the cancer in my transverse colon. My gps comment " Í suppose with your history of ibs symptoms ï should have put you in for a scope years ago". I had a year of chemo back in 98. My cancer was stage 3 into six lymph nodes. I had 5fu and some wonderful stuff called levamisole,it was banned in 200 for fatal side effects. I have been ca free ever since but for several years I have suffeed chronic diarrheah . we thought it was meds but now it seems like it may have been as a result of gallbladder surgery. My brother has been having scopes for 30 years because of uc. He also gets lots of polyps as do I. I think it is the polyps that cause the ca rather than the uc but they seem to go with the territory. Ron.

Thank you for your reply and congratulations on your pregnancy!

ron50 said:

I was never oficially dxed with crohns but the gps told me I had ibs from an early age. At 48 I had a scope that could not make it past the cancer in my transverse colon. My gps comment " Í suppose with your history of ibs symptoms ï should have put you in for a scope years ago". I had a year of chemo back in 98. My cancer was stage 3 into six lymph nodes. I had 5fu and some wonderful stuff called levamisole,it was banned in 200 for fatal side effects. I have been ca free ever since but for several years I have suffeed chronic diarrheah . we thought it was meds but now it seems like it may have been as a result of gallbladder surgery. My brother has been having scopes for 30 years because of uc. He also gets lots of polyps as do I. I think it is the polyps that cause the ca rather than the uc but they seem to go with the territory. Ron.

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Hi Ron,

It is inspiring to hear of cancer free since 1998. Hope you're doing well today. Did you have much neuropathy from the 5FU?

Tom

Welcome to the forum Tom! We always to have be concerned with cancer risks, but that certainly doesn't mean you're going to get cancer because you have crohns.

There are many threads talking about the success of people taking LDN, and we have a diet, fitness and supplements section as well that is full of helpful information!

Welcome Tom and congrats on the clean MRI.

You will find plenty of information here that could be of use to you as well as lots of support even if you just feel like venting.

Welcome Tom!

Sorry to hear about the cancer, but congrats on the clean MRI! Sounds like your GI doc was a real winner. Mine told me the same thing about not having to worry about cancer from treatments, now I have a tumor inside my right femur.
Luckily I look over all my own MRI scans with a fine toothed comb, or no one would have ever noticed it.
Fired my doctor, got a great new GI, went to see an orthopedic surgeon about the tumor but he said he had never seen anything like it and referred me to a "Bone Tumor Specialist," none of which are anywhere near here.
It's most likely benign, and it's inside the bone so there isn't much that can be done about it, so I'm putting it on the back burner since I'll have to do chemo anyway-- IF the insurance ever approves the Stem Cell Transplant.

Anyway... Sorry for the rambling, but you are not alone here with developing cancer either along with crohn's, or because of the crohn's treatments.

Oh, and I also just started taking LDN a few days ago as well, so if you have any questions or just want to chat, feel free to message me.

Thanks all for the notes and replies.

How does one reply to a specific post, and not the whole thread...?

@AVW, have you started chemo? What regimine?

Regarding LDN, how'd you go about getting an Rx and getting it filled? Was that a complicated process?

Thx.

As far as GI doctors on the east coast go, Dr. Karasik in Hartford, CT, is pretty awesome. The best? I don't know about that, but very thorough, very approachable, and very willing to refer you around to other docs when on the edge of his knowledge.

GuyNamedTom said:

Thanks all for the notes and replies.

How does one reply to a specific post, and not the whole thread...?

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Click on the 'quote' tab at the bottom of the specific post you want to respond to and then type underneath the text that it automatically inserts in the white box

No, I haven't started chemo yet. I am still waiting for insurance approval for the stem cell transplant. And I haven't seen this supposed Bone Tumor specialist yet to determine if it will require seperate or additional treatment/chemo.

Getting on LDN actually came about surprisingly easily. I had asked the doctors I saw in both Chicago and Houston if they thought I could give it a shot, they all said no, but I started seeing a different GI here and I was pretty shocked when he said he'd be willing to let me try it. He said he has a few patients on it and they are doing well.

All he had to do was decide a dosage (3 mg for me) and told be to bring the Rx to a compounding pharmacy. My insurance covers some of it, but it is still $45/month. He also put me on VSL #3 which is a prescription probiotic. It also runs $45/month.

It's been less than a week, and it's probably just the probiotics, but I'm seeing a slight improvement.

GuyNamedTom said:

Hi Ron,

It is inspiring to hear of cancer free since 1998. Hope you're doing well today. Did you have much neuropathy from the 5FU?

Tom

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Hi Tom,
The 5fu itself does not seem to cause neuropathy,it is the platinum based drugs like oxyplatin and cisplatin that cause the problem. In my case it was late onset neuropathy either caused by the levamisole or some as yet un diagnosed auto-immune disease. I cannot feel my legs from mid calf down or my left hand. I have severe problems with my kidneys losing protein. Pred didn't help and caused type2 diabetes. Because of my kidneys I am now dxed with congestive heart failure and pulmonary edeema. Surviving survival aint easy...Ron.

Hey Tom, Welcome to the community. Thanks for the tag Angrybird

Wow it sure seems like you have been through a lot but you have definitely come to the right place for great support and knowledge.

3. Have recently become hyper-aware of GMO's (near death experience will do that to you). I am now significantly avoiding processed foods like crackers, microwave meals, cookies. Pleased to report I'm 6-months soda-free. The old adage, you are what you eat is probably more true than what we like to believe.

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You know, my investigative research into diet all began with me becoming aware of the GMO epidemic currently on our hands. Unfortunately GMO's are everywhere and they are even starting to show up in the organic corns and organic soys, potatoes, zucchini's etc etc which is a very scary reality especially if policies do not change on the subject in the years to come. California had a ballot initiative to require labeling of GMO's this past election: it failed. But it got people talking and slowly but surely we are starting to see a progressive movement to demand that the curtain be lifted that shields us from seeing what really is in our food supply and just how damaging all of it can be.

It is great that you are actively eliminating processed foods for your health, and also for the health of the planet. No doubt you will experience some great noticeable benefits as you continue to eliminate the bad.

I would stress that while eliminating the bad is extremely important, I believe that taking it a step further and incorporating the good would be even better. Many people believe they are eating healthy by simply avoiding the bad things whilst not necessarily including the good things like nutrient dense foods. I believe that if you were to start incorporating nutrient dense foods like vegetables and healthy meats into your treatment plan, you will experience some great results If you already are incorporating these great foods then don't mind me

I would love to hear more about your experience with diet and what specifically you are eating rather than what you are avoiding. Pop by the diet fitness and supplement sub forum and make a new thread about your diet

All the best

Gianni

muppet said:

As far as GI doctors on the east coast go, Dr. Karasik in Hartford, CT, is pretty awesome. The best? I don't know about that, but very thorough, very approachable, and very willing to refer you around to other docs when on the edge of his knowledge.

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Good to know. I think my doctor in Hamden/Guilford is great, but sometimes it's good to get another set of eyes on something.

My doc told me recently that he would be all for recomending or having me see another GI to get a different perspective on my situation.



BTW, my GI is Phillip Ginsburg. Very good doc, busy, but always finds time for me, always.