Anyone out there with ulcerative colitis and breast cancer?

christina1961

I am almost a three year survivor of an aggressive breast cancer.  I have ulcerative colitis which was well controlled until Asacol 400 mg was taken off the market.  I started having flares in July and am in the midst of another one.  Just feeling frustrated, as I feel so sick when I am in the middle of a flare.

MsBliss

Yes, I have uc and was dx with triple neg bc in march of 2009.  Can you take Lialda or the capsule version of asacol?  Did you have tnbc?  How long have you had uc?  Btw, it is suspected that sulfasalazine may be therapeutic for triple neg bc.  Not sure if Asacol qualifies because it is not absorbed systemically like sulfasalazine,, but it was an interesting study which I recently read.

christina1961

Thanks for replying, Ms. Bliss! I have had UC since 2001.  I am on Asacol 800 HD - tried Delzicort and it did absolutely nothing for me.  The Asacol 800, even though I take 3,200 mg daily, is not as effective as 2,400 mg of the old Asacol 400.

I was diagnosed as triple neg in 2/2011, but the remaining tumor found at my mastectomy had 5-10% ER receptors so I am taking tamoxifen, too.  That is an interesting study; I'll have to look for that.

Congratulations on almost 5 years! That is very encouraging! 

toomuch

I was diagnosed with UC in 1981 and ILC in 2010. I was on 6-MP for the UC from Dec, 2007 - Oct, 2009 and have often thought that the immunomodulation from the 6-MP is one of the factors that contributed to the BC that extended from LCIS. I have been taking Colazal, 750 mg 3 capsules 3 times/day for almost 10 years. I joke that chemo cured my UC. I have been asymptomatic since chemo even when I only take the Colazal 2 times/day. Colazal is converted to mesalamine (asacol) in the colon and each capsule is equivalent to 267 mg. If you're not doing well on the Asacol, talk to your doctor about a medication change.

MsBliss - could you provide a link to the article that you reference? I'd love to read it!

MsBliss

Hi toomuch,

Here are two links which discuss the sulfasalazine /tnbc study.

http://www.ucsf.edu/news/2013/10/109376/scientists...

http://www.ncbi.nlm.nih.gov/pubmed/24094812

It's good to hear your case improved because of the chemo...I have heard that the opposite can happen.  Have you ever had your vitamin D levels checked?

MsBliss

Hi Christina,

Thank you for the congrats...I'm astonished that it's already almost 5 years.  

I'd also like to ask you if you have had your vitamin D levels checked and optimized.

I've linked the studies regarding sulfasalazine in my other post here....check it out, it's interesting!

toomuch

Ms Bliss - Thanks for posting the links. Interesting that sulfasalazine blocked xCT. I think that they are excited about creating new targeted therapy to block xCT. It sounds interesting!

I requested a Vit D level shortly after diagnosis and it was 19! I supplement with 2000-4000IU a day now depending on the season and my level is in the 60's. My MO doesn't want it any higher.

cyano

I have collagenous colitis (with markers for ulcerative). I've been on Entocort for 3 years, but things have been going really well since chemo so my doc. just started weaning me off Entocort while starting Lialda. I was on 6-MP 6 months before being diagnosed with breast cancer.

MsBliss

It's good to hear that chemo can modulated UC down.  As I've learned, it happens, thankfully.  When I was doing consultations, everyone wanted me to do CT x 4 but I had corresponded with two women who were hospitalized with severe complications of their UC after starting chemo with a taxane--it's why I decided against chemo, which was quite a roll of the dice.  At that time I hadn't read about chemo actually helping UC so it is wonderful to learn that can happen.

christina1961

Ms. Bliss,

My Vit D level was 18 when diagnosed!  I have supplemented since then, although erratically. I need to get back on track.

I am finally recovered from my flare.  I'm back on Asacol HD 800 x 4 day. I have some samples of Lialda but right now I don't want to risk changing anything.  I'm sure all on here can relate to that.  I'm enjoying being able to eat beans and salads again.

simplelife4real

I just stumbled across this thread.  

I had severe UC 32 years ago and had my colon removed as a result.  I was 29 at the time.  I have a j-pouch.  

After finishing cancer treatments, I decided to finally go back to a GI doc (hadn't seen one in 30 years).  After taking biopsies of the pouch and my upper GI tract, my doc has diagnosed me with crohn's and gluten intolerance.  Lovely!  I don't know if I really have crohn's or a chronic inflammation of the pouch. My doc put me on Mesalamine enemas that I've been doing for slightly over a week.  It seems to have helped a lot already.  

I just found out about the gluten intolerance diagnosis a couple days ago (the upper GI scope was done last week).  I immediately went off gluten.  I've read that 80% of people with celiac sprue also are intolerant to casin in dairy products so I'm thinking of cutting out dairy too.  I don't eat sugar at since being diagnosed with bc last year and avoid processed foods.  My GI system is better, but I'm now on a mission to completely rid myself of diarrhea.  I'm keeping a food log and a corresponding "GI log" to see if I can figure out which foods are problems for me. 

Cristina and MsBliss, I'm delighted you have both done so well with your TNBC in spite of your chemo treatment issues.  I just passed the one year mark from date of diagnosis of my own TNBC.  I figure the less stress there is on my GI tract, the stronger my body will be in keeping cancer at bay so this food and GI log is well worth the effort for me.

simplelife4real

I just read the links about sulfasalazine.  That's really interesting.  I took that years ago for UC and it didn't help, but I don't recall having any SE's from it.  I'm wondering if I can get my MO or my GI doc to prescribe it again.  I'm going to take a printout of the article to my next office visit with each of them.  It's worth a try!

toomuch

Ms Bliss

I must have missed it when you posted the links. I'm glad I checked back in today. Really interesting. Thank you!

My MO originally recommended AC-T but said if I wanted to avoid the Adriamycin he would consider CT. My 2nd opinion MO said thast he tought Taxotere should be avoided by someone with UC and he told me about the risk of typhlitis from it. I immediately decided to avoid it and went with AC-Taxol.

MY UC continues to remain inactive. I had biopsies in May that showed no evidence of colitis. I remain on Colazal, although I admit to not being as compliant as before.

Edited to coirrect typos
 

orangeandferal

It has been more than a year since anyone posted on this thread, but I wanted to chime in as another one with IBD and breast cancer. I've often wondered how it is that I've been "twice blessed" in this way, and somehow it's comforting to have some company in this special status.

I was diagnosed with IBD (has been diagnosed as both UC and Crohn's at various points... who knows?!) in 1982, when I was 12 years old. Spent the next six years having multiple surgeries in which the docs tried to spare parts of my colon and ileum, to no avail. Eventually they constructed a J pouch (tho back then it was called a "Park's Pouch" - presumably for the doctor that pioneered the procedure?) I've had varying levels of health over the past 33 years, but was overall pretty stable, until I was diagnosed with BC in 2014, just days before my 44th birthday. Turns out that my first couple of mammograms had missed the tumor, because I have (er, had) dense breast tissue, so it had a chance to grow a while, and was finally caught at stage II B.

Both conditions are well represented among various family members, so I've wondered about the impact of chronic systemic inflammation and breast cancer. But I'm just wondering.

Anyway, happy to "meet" you all.

simplelife4real

Welcome Orange.

I was diagnosed with both Crohns and Celiac Sprue by my GI doc last fall to add insult to injury. I had been having constant diarrhea with my J-pouch and some pain. I'm now on mesalamine enemas and off gluten for almost a year now. Both things have helped tremendously. It never occured to me that I might have a gluten intolerance. I wonder if that had been the main problem all these years. In any event, I believe keeping down all forms of inflammation helps my body to keep cancer at bay. I figure it can't hurt....plus I feel better without the constant diarrhea.

Jblmom

Hi there,

Glad to find this thread. I've had Crohns for 18 years. I had a total colectomy with j pouch 12 years ago and been on and off many immunosuppressants. I was recently diagnosed with bc and will be having BMX this week. I don't yet know about chemo. I'm already having a mild flare and am worried about what affect this new diagnosis will have on the Crohns and vice versa. Any information or things I should ask doctors would behelpful. Thanks in advance

jamielynn123

Hello,

I am recently dx with IDC on 9/30/15. Have had two chemo treatments so far, docetaxel and carboplatin. Along with Perjeta and Herceptin. I get chemo every three weeks for 6 cycles. I was dx with ulcerative colitis in 3/2014. I have been successful in managing UC with Lialda and strict diet and supplements.

Since the chemo treatments, I have had runny diarrhea. The first treatment I had bloody diarrhea for 10 days. Then the second chemo I did ok for a few days, then the diarrhea started but without blood.

One week before next chemo- I am currently only taking my Lialda (3.6g/day) and omeprazole. I am not following my healthy diet and not keeping up with my supplements. Unsure if Lialda is really working or giving me diarrhea.

Does anyone have any experiences or suggestions to share about UC and chemo treatments?

Thanks

Moderators

Welcome JamieLynn! We're hoping some other members will be by shortly to offer some advice to you.

Thinking of you! Please keep posting in our community to meet many others who are happy to support you.

--The Mods

simplelife4real

Jamie, I wish I could help you. I had UC many years ago and ended up with a j-pouch. I have also been diagnosed with Crohns since I ended my treatment for breast cancer. All I can say is that I had a lot of diarrhea with my chemo and they gave me extra fluids with each infusion to keep my blood pressure up. That was a big help. I assume you are letting your MO know what's going on with the diarrhea. Chemo is very irritating to the intestines. Do you have an appointment any time soon with your GI doc? He/she might be able to help with different medication.

jamielynn123

Thank you for the suggestions. I appreciate any insights. I feel kind of lost on what is going with my body. Everything changed so fast. At first my GI said to just add prednisone to help. I already take Decadron during chemo treatment. I feel like my GI does not know anything to help me.

simplelife4real

Jamie, I found my new GI doc through my MO. I specifically asked my MO for a recommendation and she immediately knew who she wanted to suggest. I go to a pretty big facility (Vanderbilt in Nashville) for my major healthcare problems and my MO and GI doc communicate with each other. Do your MO and GI docs work at the same institution? Since your GI doc doesn't seem to be very helpful, I wonder if your MO might be able to connect you up with someone else that can work with your MO to help. I used to take a prednisone often for UC when I still had my colon. The Decadron wears off after a couple days so maybe it might help to have prednisone for those periods in between infusions. The problem with long-term prednisone use (as you probably already know) is that it's soooo hard to get off of it. I hope you can get some relief soon and the UC doesn't get too bad. I'm sorry I don't have anything more helpful to offer.

I thought you might get a kick out of this picture I took at a bathroom at a National Park while on vacation this fall. I think I go through this much TP in a week. Later on, in the same trip, I saw stalls with about twice as much TP....no fear of running out of TP in those stalls!

lanacs

I have had ulcerative colitis for over 25 years and developed breast cancer recently. I just started Tamoxifen about 30 days ago. I am having some UC systems that I haven't experienced previously like mucous and blood. Anyone else in this situation? I wonder if the Tamoxifen being introduced to my body recently is fueling this. I am Stage I ER+ breast cancer. I did not have chemo but did undergo 20 radiation treatments ending one month ago.

rmdec

Hi there, I've just come across this discussion. I've had UC since 2004, then was diagnosed in August 2017 w de novo Stage IV BC. My UC has always been under control with 2g Sulfasalazine per day. I got a flare up maybe once a year from stress that my GP would treat with prednisone suppositories and it would settle. So my UC was not really a big deal. Once I started chemo for my BC (Docetaxel/Herceptin/Perjeta), a few rounds in, my UC has flared up much worse than it ever had and has not stopped since December 2017. I've been hospitalised twice with low neutrophils and dehydration, they gave me fluids and IV steroids but that didn't help at all. I have bloody diarrhoea about 20 times a day, abdo pain and bowel incontinence where I get the pain and then lose control, meaning I have have to live in adult diapers. My Oncologist has been no help, she is not sympathetic and says it's not due to the chemo. My GI said to double the dose of Sulfa, but as that and the steroids haven't worked the next step is immunotherapy and he is not willing to do that as it's doubling up on toxic drugs. So he just said take Loperamide 3 tabs 4 times a day