Systemic Mastocytosis Management

Hi,

I do not have any mutations and have been on Gleevec for 4(?) months. Is it helping? I don't know since the side effects are pretty much everything I already had ;)

What I take for my masto daily:

am
1 Zytec
1 xantac
1 Cymbalta
2 vials of Gastrocrom
1 puff Albuterol

Noon
1 Zyrtec
1xantac
2 vials of Gastrocrom

Dinner
2 vials Gastrocrom
1 Gleevec

Bed
1 Zyrtec
1 xantac
2 Atarax
2 vials of gastrocrom
1 to 2 puffs Albuterol

Weeekly
Actonel (for ostoeporosis)

I also take Robaxin and Lodine for 'arthritis'. Estrogel for hormones. Potassium (for the water retention from the Gleevec) a water pill (dito)

Yes, I know it is alot of antihistimines. My allergist told me I could take up to 6 Zyrtec a day but I only take the 3 for now. And, no, the Atarax does not knock me out anymore (too bad! they were helping me sleep)

Bear in mind everyone is different and we all take different dosages of different drugs. But you may want to ask about upping your Gastrocrom.

The chemotherapies are for people with smoldering, aggressive or mast cell leukemia.

My tryptase was 73.5 and 70.5 respectively and have been holding fast at those numbers.  My CT Scan, dexa scan were normal.  I also have progestaglandarin D2 level of 1241 (normal being under 240).  My white count is continuously elevated. I also have uricartia pigmentosa confirmed by a skin punch.

I take...

10mg loratadine 1-2x a day
150mg zantac 2-3x 1 day
325mg aspirin 1-2x a day
200mg 4x a day gastocrom
1000mcg B12 1x a day and a B12 shot 1x a month.

Hi, I am new to the forum and you are the first patient i have found being treated with Gleevec. My mom is the patient, 72, and not online! How many milligrams are you up to?

Hi Sfarmer,

I am so sorry that your mom has to deal with this. I can't offer much information, but I hope that you can get advice from others here. You might also want to contact the TMS (The Mastocytosis Society) Chair (President), Valerie Slee, because she has many contacts and is knowledgeable as well. If you would like her email address, let me know and I can give it to you.

I am on 400 mg of Gleevec a day. Dr Verstovek called me not to long ago, we discussed what medications I was on and he said I could up my Gleevec to up to 400 mg (which I was already on). Of course, being on the Gleevec disqualified me for a trial he had coming up but oh well.

The side effects are not bad, in fact they are just all symptoms I already had. The only thing is that the first few days she needs to stay near a restroom!

Has she had a bone marrow biopsy?

Faith

For those of you taking Gleevac, do any of you know if you have a c-kit mutation?  Just curious.  Thanks!!!

I also decided to take omega-3 because they are anti-inflammatory.  I also like to eat licorace candy (too much licorace can be bad for your liver, so avoid any high doses).  I just have a few pieces during the week.  Neither of these have ever been proven to be helpful for our condition..  I have a degree in immunology, so this is my own little "voodoo immunology" mix.  I seem to feel better when I do it, but that could all be a placebo effect because I believe in it.  Oh well, as long as I feel better.

I also drink a lot of tea, because the tannins are good for you.  Lot's of pomegranite, fruits, and vegetables.  I believe in the anti-oxidant power of phytochemicals in plants.

I used to work in a zoo, and make up the dinner plates for the animals.  They eat REALLY well, so I took them as my model.  I eat sort of like a chimp!

I also think that stress reduction is very important.  I try to learn a new thing every six months.  I find something new to learn, to keep my mind very occupied.  I also have learned to let go of things, like not getting wigged out if sometimes my house gets messey.  I also believe in finding a good spiritual influence to give me hope.  I think that really helps, no matter what your faith.  I am Christian, but I have friends that are Muslem, Hindu, Jewish, and Buddhist.  It seems that listening to the needs of your soul seems to help.

Anyway, that is what works for me.  I dould love to hear more from people, what works for them to manage the systemic masto.  It is so UP and DOWN, and UP agaiin.

Thanks!

To Jillg:  I also have the exact same diagnosis as you do, no skin presentation, small amount of irregular spindle cells in bone marrow. Treptase is 19.5.  I have been taking Pepcid, Zoloft  and calcium in the AM and Prilosec, Zyrtec and calcium in the PM.  It all seems to be working fine with me expect for bone pain and some days just not feeling well. I was diagnosed about 2 years ago at age 62.

JillG,

I do not have any mutations (per my bmb at MD Anderson). I believe that is the only way you can take Gleevec or is it just the ckit mutation? Either way I don't have any.....of course, they may discover more mutations yet.

Faith

Thanks very much everyone!  Keep the information coming.  Also feel free to list anything that helps you here, or anything that you have found challenging in dealing with the systemic form.

Faith, you are correct.

If you have the CKit816Val mutation, Gleevac will not work.

I have no idea if I have the mutation.  My BMB wasn't tested for it so I'll just get the blood test next time I see Dr. Castells (if it's not too expensive).

Can they tell the mutations with a blood test? I did not know that! I assumed they got all that information from the BMB but they did take lots of blood!

Faith

I thought the same but I spoke with Dr. Castells and she said that they can check for the mutation by blood but not all labs are equipped to do it.

Hello,

For those of you who have systemic masto, I was wondering if you might care to list what kind of monitoring that you are receiving for your condition (types of tests and interval at which you receive them)?

I get a serum tryptase every six months with a blood cell differential count.  Once a year I get a liver panel too.  I had a bone marrow biopsy when I was first diagnosed (about 6 yrs ago), but have not had once since.  My tryptase has remained stable.

Thanks,
Jill

Dexa scan every 2 years (you'll need them more if you have osteoarthritis or osteopenia)
Tryptase annually.

That's it unless something changes.  I see Dr. Castells once a year.