Question about UC and cancer

Hello and welcome!

I am very sorry to hear about your diagnosis :(

Please take a moment to look at this:

https://www.healingwell.com/community/default.aspx?f=38&m=1666318

There is a list of medications, some are similar to Asacol (lialda, asacolHD, Apriso, Canasa...) and they have Patient assitance programs that can lower your out of pocket coasts to around $20 a month. I am sure you can find something that will help you. Give your GI a call and see if someone will consider writing a script for one of these alternatives to Asacol.

I haven't had much luck with diet but others do. Have you heard of the SCD Diet? That is probably the most commonly mentioned diet on this board.

Damion,

Welcome to the forum.

So sorry about your recent diagnosis and the breast cancer too :(

I haven't read any data about a link between UC and breast cancer.

I think you'd be an ideal candidate for LDN - low dose naltrexone. It's been proven to put Crohns' patients into remission, and I've read stories about it curing a few with breast cancer too. So, in your case, it would probably help with both conditions.

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org
and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease at:
www.ldndatabase.com

 

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too. Bottom line is it works!

 

As far as diets go, SCD - specific carbohydrate diet - is very helpful for UC.

 

Hope this helps. Good luck to you.

Please let me know how it works out for you.

 

 

 

Insofla,
Thank -You so much for the info! I will see what my Gastro doc has to say about it but have a friend that is a Doc and can get script from him. I start Chemo in a couple weeks after a couple more tests so really wanted to get the UC under better control.
It really sounds as though the Asacol has not worked very well for two many people, why is it the drug of choice?

Also thanks Sherry, are the sulfa drugs the ones you have to stay out of the sun with? I think that is why they did not prescribe, I work outside in Fl.

Yeah, with Sulfasalazine you are supposed to stay out of the sun but with sunscreen it wouldn't matter as much. It just makes you more susceptible to burning.

Insofla,

Thanks for the sites! So much to read and so many ideas.

I have figured I would stay off all drugs for now and just try diet. The Asacol did not seem to work at all with the 2 weeks sample I took and in fact seem to make it worse, I work outside in Fl. sun all day so the sulfa drugs did not seem like a good idea this time of year as no amount of sun block stays on for long! Thetransdermal LDN is something I will try if no relief with diet. Not being to optimistic yet but just in a week of going gluten free and adding probiotics, Acai juice and aloe vera stomach formala I have seen a big difference! I have never been a fast food eater but am extra careful now of any foods with to many ingredients that I can not pronounce.

Getting MRI and another Biopsy to see what chemo treatment is best to shrink mass before surgery.

Thanks for you support and caring!

So other than the 2 weeks of the Asacol I have never been on any drugs for the UC. Other than the symptoms of bleeding and loose stools there is no other symptoms (bit of bloating when I eat something that really does not agree) The biopsy when colonoscopy was done was no cancer there (have since been diag with breast cancer). So question is why would more damage occur? According to gastro doc UC is not someting to cure just put in remission, most of the post here seem as though most of the drugs do not work??

For free medication, you can apply at shirecares.com. If you qualify, you can get Lialda to treat your UC, which is basically the same as Asacol. Good luck with everything and hang in there.