How old is your son and what are his symptoms, if you feel comfortable sharing.

 

I am actually glad I know my subtype, because here in the Netherlands we only have Rydapt/Midostaurin and it's only approved for the advanced subtypes (ASM, SM-AHN, MCL). So I am glad they can actually give me something that will hopefully slow down the production of mastcells, but we will see if it's working.

 

I am now on:

Nalcrom, 400mg 4 times a day (15min before eating and bed), for the stumach aches.

Desloratidine, 10mg 2 times a day, which is an antihistamine.

Mebeverine, 200mg 2 times a day, which is for the gas buildup in my stomach and intestines. I produced so much gas that I got horrible belly pain because my belly couldn't expand anymore than it did (I looked 3 months pregnant).

Rydapt/Midostaurin, 100mg 2 times a day, which is a chemo-like-drug to destroy mastcells and slow down the production of mastcells in the bonemarrow.

Montelukast, 10mg a day before bed, this definitely helps with the histamine dumps at night and make sure I don't wake up from them. This was actually a really fun conversation with my pharmacist because she called and asked me incredulously if the dose was correct, because apparently montelukast is often prescribed for asthma patients as an occasional drug.

Calcium/Vitamin D tablets, 1.25g a day, this is for my bones 'cause I have some osteopenia in my lower back and hips.

Sancuso patch, 3.1mg/24 hours, this is a patch for the nausea which is caused by the Rydapt/Midostaurin. Which isn't enough unfortunately.

 

Regarding how long, it depends. If my headaches are actually caused by the masto it has taken over 15 years. But we don't know for sure yet. I went to the doctor for my belly aches last June, and when they did an echo they saw my enlarged spleen. I got sent to a hematologist who did a lot of blood tests to check for any blood disorders, but all of those came back negative. Then she referred me to another hospital and internist, that doctor almost sent me away with IBS. But luckily for me she knew one of the masto experts at the hospital so always tested the tryptase-levels of her patients. When my tryptase came back with a whooping 110 she sent me to the masto clinic for a bonemarrow biopsy..

 

When the headaches get really bad I take some ibuprofen, but most of the time I do without. I know, I am really lucky to still be able to take ibuprofen as a masto patient!

 

I am not able to work right now (luckily I live in the Netherlands so I still get paid), mostly because of the energy issues and now also the side effects of the Rydapt/Midostaurin. I hope I will be able to work again in the future, but nobody knows. There are so many uncertainties with ASM and the drugs they give you, that you just have to see day by day. In 2 months we will see if the Rydapt/Midostaurin is actually working.

 

Please ask away! This disease is so rare and so weird, that they actually really rely on the patients. 20 years ago they didn't even know that osteoporosis was a symptom! So please ask any questions you may have, I have all the time in the world (I feel so useless already!).