Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Josh in Colorado http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1329600244 Message started by jostreet on 02/18/12 at 09:24:04

Title: Josh in Colorado
Post by jostreet on 02/18/12 at 09:24:04

I'm new to this site so I figure I will just jump in.

Short Story - As a kid I always broke bones (arms, legs, fingers, etc) and also had stomach issues (upset stomach, diaherra). At age 26 the Urticaria Pigmentosa (UP) started. I'm 38 now and the UP is still going strong. It's really quite a bummer because I don't know if they will ever stop. I'm running out of skin.

At 28 and after several dermatologists the spots were diagnosed as UP. After a BMB I was told I have Indolent Systemic Mastocytosis. My Tryptase has bounced around from 13 to 27. I've seen Dr. Castells in Boston, Dr. Wilson at NIH, and Dr Weber in Denver. I take Zyrtec, Zantac, Hydroxyzine, Singular, and the Gastrocom. I've done PUVA (3 years 2 days a week) for the UP with limited success. As soon as I stopped doing PUVA the fading of the spots returned within weeks.

During my appointment with Dr Castells she told me of Midostaurin and that it might help me out. I have also been told that Midostaurin is not for me. Does anyone have any experience with Midostaurin? Is it only for extreme cases?

Title: Re: Josh in Colorado
Post by Anaphylaxing on 02/18/12 at 09:49:40

Welcome Josh!

Sorry that you had to be here but glad you came. You sound like you are very on top of your situation and have seen the world expert so that is fantastic!!

I am on the same meds as you except I also take ketotifen and I am ?MCAS.

I have not taken Midostaurin and have only heard of it used for acute myelogenous leukemia, but if she says it is an option I would believe her; she is extremely knowledgable about mast cell disease and many of us just wish we could see her.

There are others on here with UP and I'm sure they'll chime in.

The other thing is there a few patients in Colorado who have started a support group if you're interested and have a meeting coming up in May.

Do you react to foods or anything else or are those things controlled for you now?

Title: Re: Josh in Colorado
Post by Joan on 02/19/12 at 10:46:11

Hi and welcome to the forum!

It sounds as though you're really suffering with the UP. Maybe others here with it will have some ideas for you.

Midostaurin (also called PKC412) is still in clinical trials and not yet approved for use in indolent SM, as far as I know. I've spoken to a couple of people who've been on the drug for about 2 years, and they were approved because they have ASM. I'm sure Dr. Castells knows more about it than I do, but I don't know of anyone with ISM qualifying for the study.

There's an article online, published by Georgia Health Sciences University about Ralph Brown, one of the patients:

http://www.georgiahealth.edu/cancer/clinical/trials/brownstory.html

You might be able to contact him through GHSU.

The closest site for a Midostaurin trial, I believe, is Stanford Cancer Center in Palo Alto, CA. Dr. Jason Gotlib, in the Hematology Dept. there, would be a person to contact about this. He's a great doctor, in my opinion.

There are a couple of notices on this forum about the Colorado support group and contact information for Jan Marie Smith, who is coordinating the meeting, if you think you want to attend. Dr. Theo Theoharides is going to be speaking at the meeting (May 5th), and might have some helpful ideas from his research. A GI doctor who treats SM patients might also be there.

If you have any other questions, feel free to ask!

Title: Re: Josh in Colorado
Post by Riverwn on 02/22/12 at 04:23:25

Hi Josh!!
Welcome to the board, we have some really great people here and they make is so easy to learn and live with our conditions :)

I have UP.. and Im just wondering why you want to take an experimental drug?? Are you feeling really bad?? As far as DRs you cant get any better than Dr Castells... you already have the BEST!

Again, welcome here Josh.. we are always handy to give you a laugh, some smiles and hugs too..
Hugs
Ramona