Indolent Systemic Mastocytosis

Hi Sal76 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your Mastocytosis diagnosis

I am Mike and I help out around our various support groups. 

I don’t have Indolent Systemic Mastocytosis...... and yes I did have to search for this.

But for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Indolent...... slow growing T-Cell Non Hodgkin's Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) but aggressive fast growing type of T-Cell -Non Hodgkin's Lymphoma was then presenting so I appreciate in part the challenges of a rare cancer journey rather well....... and it actually took me about 14 years to actually talk with someone with the same condition.

The important word is "Indolent' as this infers slow growing....... I did not need any full on treatment for the first 14 years of my diagnosis and continued to work in a demanding teaching job.

I did a search on the Community and did not find any reference to Indolent Systemic Mastocytosis.

So a few questions.....

     Are you receiving any treatment?

     If so what?

     Where are you based/hospital?

Having looked through the link Indolent Systemic Mastocytosis it looks like this is one of these rare, unexplained conditions that you could live with all your life....... but a few may develop into a more demanding type of Blood Cancer....... has this been mentioned?

Always around to chat.

Hello,

thanks for replying.

I’m not currently having treatment but am due to start UVB in January for my skin.

I am being looked after by Taunton Hospital.

Mastocytosis does have the cancer label, which I’ve struggled with. 
One day at a time is all I can do right now.

Hi again Sal76 - my first Lymphoma that was diagnosed in 1999 was a Low-Grade - Cutaneous T-Cell Non Hodgkin's Lymphoma (NHL) Mycosis Fungodes that is an NHL that actually grows 'on' the skin (not a skin cancer)..... but classed as a Blood Cancer like all Lymphomas.

My story is rather complicated (See my story) due to me eventually having some significant treatments but this was mainly due to my second type of aggressive Lymphoma appearing.

But in the early years I had a number of years of UVB....... and on the whole it did a good job but as my type of skin problem was a Lymphoma it was inevitable for it to progress.

I sent a email to my very supportive and helpful Dermatology SCN (Cancer Nurse Specialist) and she got back to me saying that she has one person with Indolent Systemic Mastocytosis. She has been a patient for years and has been coming for UVB treatment on and off for all these years and her condition has not progress further....... with the UVB doing the job....... she said they see this as like living with Psoriasis.

There are a number of types of skin conditions that 'could' develop further to become a type of blood cancer...... but as an encouragement our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 69 a week ago and as a family we celebrated 9 years since my last treatment, I am living a great life and we continue to look forward to what else life has in store first us to enjoy.

So should this progress to a blood cancer..... there is lots of tools to do a job on it.