Et + Cutaneous Mastocytosis

[Ryna-Ally]

Blessed Day to everyone!

Does anyone here having ET and cutaneous Mastocytosis or systemic Mastocytosis?

Can I know what symptoms currently you facing ? Did you have headaches almost everyday 😞.

[Jess-UKMasto]

Hi Ryna-Ally, please feel free to join our group on HealthUnlocked for The UK Mastocytosis Support Group healthunlocked.com/ukmasto. Generally people with an MPN plus mastocytosis receive treatment for each condition, usually separately since the meds don't address both conditions, ideally from a doctor who knows both well. Headaches aren't unusual in mastocytosis. Depending on what the mastocytosis is up to the treatment is usually targetting the specific symptoms (such as antihistamines, H2 blockers, mast cell stabilisers, anti-leukotriene medications) by trying to manage the effects of the chemicals released by the excess mast cells. If the mastocytosis is more advanced then treatments are aimed at decreasing the number of mast cells. I don't know of a patient orgs specifically in Singapore, but The Australian Mastocytosis Society (TAMS) does support the Asia-Pacific region and may have doctor suggestions for you. mastocytosis-mcas.org is the website with all the patient group contacts. And please feel free to reach out directly if you like.

[Ryna-Ally in reply to Jess-UKMasto]

Jess, thank you for your reply . I’m very grateful to everyone here .. I’m not from UK yet I was treated very nicely . I gain lots of information here .

Today I went for my 2nd opinion for ET & Mastocytosis.. look like the doctor is more keen on treating Mastocytosis. Whereby ET not much was elaborated to me .. he told me it’s not cancer just a blood disorder. Nothing to worry about it.

It’s totally opposite from what I have read online.

Thanks for link ..

[Jess-UKMasto in reply to Ryna-Ally]

It would be helpful to know what your specific diagnosis is in regards to the mastocytosis (what does your bone marrow look like, are your spleen or liver enlarged, what is your tryptase level, are bloods normal aside from what you'd see in ET) and then that gives some guidance about how to manage the mastocytosis aspect. The people here in this group will be the ones to give ET guidance as that isn't at all my own area of expertise. I hope others will pop in on that.

[Ryna-Ally in reply to Jess-UKMasto]

This is my diagnosis : Cutaneous Mastocytosis. (After skin Biopsy is done )

Cutaneous Mastocytosis

[Ryna-Ally in reply to Jess-UKMasto]

Jess, my apologies ! My English not so good ! I’m not able to give you the explanations in words Instead I attached my test information

Blood test information

[Ryna-Ally in reply to Jess-UKMasto]

While testing for Systemic Mastocytosis in Progress. That is when I gotten my ET diagnosed

Result for BMB

[Stephen399b]

I have had ET and systemic mastocytosis diagnosis since 2016. Masto diagnosed as indolent.I take fexofenadine and used to have renitadene H2 blocker. This became unavailable during covid so haemo said to stop taking it, had no side effects. I take hydroxicarbamide for ET.

No headaches for me though, so hope yours ease off

Stephen

P.S. ET is a blood cancer - get a new haemo!

[Ryna-Ally in reply to Stephen399b]

Stephen, surprise me ! you have no headache.. this headache visiting me almost everyday and will stay whole day with me .

Monday will be 1 day admission with new hematologies to check further on my conditions.

Hope to have good solutions for my headaches.

P.S. The new haemo also same pattern ! Tell me it’s blood disorder not a blood cancer …. 😩 ! My husband happily tell me “you see I told you ! Nothing serious” I’m tired explaining 😞 !

[Stephen399b]

WHO is good enough for me!cancerresearchuk.org/about-...

Stephen

[Ryna-Ally in reply to Stephen399b]

👍🏻.. very clear now ! Thanks