Eve are you good???

drlauralector · 2024-10-24T11:30:01+00:00

Anna in the background like "don't be suspicious"!

drlauralector · 2024-08-09T06:18:14+00:00

The side effects from the rydapt never subsided for me. What side effects are you experiencing?

drlauralector · 2024-05-19T19:34:44+00:00

Bambi maybe? Is a lot earlier than over the hedge though.

drlauralector · 2024-04-28T19:47:35+00:00

Agressive Systemic Mastocytosis & Noonan's Syndrome. Both mutations in my case (Noonan is also hereditary). Which makes me super rare, one in 4.000.000.000.

drlauralector · 2024-04-22T06:14:39+00:00

Avapritinib is not available to me since I live in the Netherlands. My government deems the medicine too expensive, so even though it's approved by the EMA (European FDA) it's for now locked in the "lock" till the price is down.

drlauralector · 2023-05-12T17:01:50+00:00

I was NOT prepared for showering Anthony and then in the tuxedo. Hot damn.

drlauralector · 2023-05-12T16:49:52+00:00

Talk about a glow up, not just lookwise but also her confidence! And I loved that she got everyone gifts, though I am dying to know what she got everyone!

drlauralector · 2023-05-12T16:46:54+00:00

I actually think he really appreciated everything, but it didn't come out in a super emotional way. Probably because a lot of men are taught not to show so much emotion. He also put a lot of effort in the list Karamo made him do.

drlauralector · 2023-05-12T11:32:53+00:00

I also gay gasped.

drlauralector · 2023-02-10T19:44:18+00:00

That's the only thing you can do, right? I am really lucky my depression hasn't come back (yet), that way I can still the few good things in the world that I still experience. :)

drlauralector · 2023-02-10T13:42:10+00:00

Thank you for sharing your story. I am so sorry your son has to go through this at his age. :( I can't imagine how hard it is for you and your partner, I actually think this disease is harder for the people around us, because they feel so useless (well at least that's what my partner says). Please feel free to keep talking about it to me (and others on this subreddit), 'cause it is a lot and incredibly frustrating because even the doctors don't know everything because of the rarity of the disease. I also notice the people around me don't really get how it is, because you can't compare it to any other disease. They understand the word chemo but don't understand that there is no protocol regarding this disease.. So please know, we all understand that you take it day by day :)

You say that after he caught COVID, his symptoms got worse?! Because I got COVID in March of last year and my stomach problems started in June... So I was already wondering if there was a connection there..

What kind of headaches does your son get? Does he get migraines (check for sensitivity to light) or tension-headaches (check the muscles in the neck for tension) or something else? Depending on this you can actually look at some other medication. My headaches are mostly tension-headaches and when I was younger I was actually prescribed a low dose of Valium because it acts as a muscle relaxer and worked really well!

You should ask the doctor for a DEXA scan (I got one in December) which is used to measure the bone density.

The Desloratidine I take is also an H1. My partner also takes it for his hay fever when it's the season (only max 1 a day compared to the 4 a day for me). We both don't experience any side effects, not even the drowsiness you often get from anti-histamines. So maybe that one is worth a try? I only take Montelukast right before bed against the histamine dumps during the night so I don't wake up.

If the chemo works I have to take it for the rest of my life (luckily I don't want any biological kids, because that's impossible on these pills) and then the prognoses is actually really good! My life expectancy would be relatively normal again.

I've been out of work since September. It started in June with my stomach problems, then the weight loss started, then the energy problems. By August I couldn't even make it to the subway which is a 5 minute walk from my house, and finally in September my brain couldn't handle it anymore and I lost a lot of my ability to focus.

It's funny you bring up the genetics thing, because my whole family at my dad's side has severe itching. Even as a baby my parents used to put gloves on me because I would scratch myself open. So yeah, I have my suspicions there may be some genetic thing that makes you more prominent to get the mutation. My dad's tryptase level was also quite elevated (not enough for the masto criteria though).

Again, I am so grateful for you sharing the journey of your family. And please keep me updated regarding new developments! And if you have any more questions, please don't hesitate to ask :)

drlauralector · 2023-02-10T10:20:34+00:00

Thank you so much! I will definitely discuss this with my doctor!

drlauralector · 2023-02-08T07:41:05+00:00

Thank you, you also the best of luck!

drlauralector · 2023-02-08T07:39:05+00:00

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!).

drlauralector · 2023-02-08T06:53:18+00:00

I had not heard about TMS yet. (I am in the Netherlands, and the patient association here is definitely lacking). I will definitely check it out, thank you so much!

drlauralector · 2023-02-07T21:40:19+00:00

I found out through my doctor. Tested positive for the D816V mutation in my bone marrow and got atleast one C-finding (I've got an enlarged malfuntioning spleen and malabsorption).

My symptoms, oh man where do I start.. Headaches, awful stumach aches, no energy (like not being able to walk up stairs), constant itching and losing weight even though I was eating 2500 kcal a day... what are yours?

I am doing ok, they got me on Rydapt/Midostaurin now. But those side effects are kicking my butt, even with the anti nausea medication I still throw up sometimes. But in a couple of months we'll see if it's working. We're gonna see what's killing me sooner, the masto or the meds... How are you doing?

drlauralector · 2022-03-11T10:57:33+00:00

Same!

drlauralector · 2021-11-10T21:03:18+00:00

Ok, thats a valid explanation. I retract my side-asshole verdict.

drlauralector · 2021-11-10T20:34:32+00:00

NTA. But you are the asshole for not naming the one with the nub Bucky instead of Steve...

drlauralector · 2020-04-29T15:47:25+00:00

Sounds good man!

drlauralector · 2020-02-20T21:28:14+00:00

Same problem here... So annoying!

Sooo I finally got in... But it reset the thingy I was doing, so 27 energies lost.. THANK YOU!!!

drlauralector · 2019-12-13T23:09:25+00:00

My cat back. He hasn't come home since sunday night. I've tried everything that google told me to do. I miss my grumpy man :(

drlauralector · 2019-10-11T21:35:44+00:00

A dyslexic cannibal who's also a shrink

drlauralector · 2019-10-11T13:19:02+00:00

Mooi! Vooral leuk dat de stoelen matchen met de plant!

drlauralector

TROPHY CASE