GREAT NEWS, JARED!!!!



I REALLY hope this doctor works out for you!  He may end up being a reference point for us to send others to him!  He seems to be up on masto well enough to have produced that report with Dr. Molderings.  The fact that he and Dr. Molderings are working together along with another German research shows that Dr. Afrin is moving up in the masto circles and this is good.  The fact that he and Molderings are communicating together is also good because Molderings and his colleage are in Germany and the way researchers work is that they will reach out to one another when they find a colleague who has a like understanding or vision on something and then they begin working together.  So, since Molderings has problished other projects similar to this in the past few years shows that Afrin is up and coming and moving up in his expertise.   This is really good for us masto patients for the more doctors who come over to this MCAD side, the better it is for us all.  

Unfortunately there has been this really stupid exclusivity of ONLY SM is masto and boy is this so wrong.  Masto is not exclusively the neoplastic form of the disease, but there is this kind of morbid ideia amongst some patients who think that this makes them special and it's so very weird and even wrong for there's nothing special or positive in having a rare disease!  There's no status and nothing to brag about in having one form over another.  These people don't have normal lives and their disease is what defines them and so they act as though this form is the "real" form and they go nit picking amongst other patients as though that one form gives their disease more validation than any other form and boy is this so off!!

We are ALL struggling with this illness and we are ALL trying our best to find answers for our problems and greater stability to our illness and if we can find doctors who are able to better treat us, then GREAT!!  

If Dr. Afrin is showing himself to be one of those doctors who has a strong belief in the MCAD diagnosis, then this is tremendous for we need these doctors as much as we need those who are strong in the SM diagnosis!  We are ALL sick with this stupid disease and the more doctors who can treat us, the better FOR ALL OF US!!

So, Jared, this is really great news and I'm thrilled for you!!   Please let him know that we patients are rooting for him to not only help you, but to continue helping all of us!!!

Way to go Dr. Afrin!!!



Lisa

I'm right there with you Joan!!!

It's one of those things I've not yet been able to understand or more like identify with and I was astounded when I heard another masto patient, who has been in this game for about 15 years say that there is this kind of weird competition amongst us as to who is "SM" and who isn't and those who are seem to think they belong to some special club or group and this makes them more important or special or whatever!!

In fact I've mentioned it before here but if you talk amongst some of those on the other sites, they list what they have behind their names much like doctors list their degrees!!   Yikes!!  

I've got 4 years of psychology due to my university studies for education for we depend a lot on psychology to help us identify learning difficulties and behavioral problems in children and their parents since this so interferes with children's well being in school and when I saw all the things listed after some people's names I thought, what on earth is that?  When this person told me I was shocked for the last thing any of us want, or more like, the last thing any mentally healthy person should want is to be identified by an illness.  Well, these people are not only identified by their illness, they also are defined by it for this is what they seem to show is most important about who they are.  Well, amidst a group of people we all try to identify who we are in that group, but this is one group that I, personally, am sorry that I had to join!!   I'm grateful for all of the friendships I've made and the way that you all have enriched my life and helped me when I've been most in need.  But as much as I don't like saying this, and I'm sure you will all agree with me, but I sure do wish we could have met one another on some other terms than these!!!    Why couldn't it have been a horse appreciation club or a cooking club or a basket weaving club or who knows what else?  Why did it have to be a club based upon being SICK?!!    I don't like the fact that I had to rejoice when my first positive answer came back and it pointed to masto!!   I didn't like that I was relieved when it was positive for masto and that took me out of the hot water for carcinoid!!   I don't like the fact that I've become a research subject for Harvard and that my son has now joined in with these researchers looking at us so closely!  

I WANT TO GO BACK TO ANONIMITY!!!!!!   I WANT TO GO BACK TO BEING NORMAL AND HEALTHY AND JUST PLAIN ME!!!!!!!!!!!


BUT......If I do have to live with this reality...THEN I'M GOING TO MAKE THE VERY BEST OF IT THAT I CAN!!!!!!!!!!!!!

Since I can't change my situation and it doesn't seem that God is going to intervene either, well then, I've got some CHOICES to make!!

So, I REFUSE to be defined by this disease.  Masto is NOT LISA and LISA is NOT MASTO!!   It is a part of my life and a very inconvenient part of my life and nothing I'm proud about!!    I'M A MOTHER!!!  I AM A WIFE!!   I'M A SCHOOL PRINCIPLE AND TEACHER!!  I'M AN AMERICAN!!  I AM A PASTOR'S WIFE!!!  And I am a number of other things!!!  I am NOT masto!!!   It is a mere inconvenience and I must learn to live with it and put it into it's proper place of importance in my life!!!

I think that especially for today I am going to do a something a bit different.


Happy Mother's days to you ladies!!!



LISA / jenny/chris/spencer

Julie,

I was one of the nay sayers, as you say.  And with reason.  MCAD is an extremely new diagnosis as I'm sure you know and unfortunately way too few doctors out there know about it.  Until Afrin came out with this new report, there was no way to know what side of the fence he was on and even who he was for in the masto world his name is brand new.  None of us know who he is and to send a patient from Canada all the way to South Carolina not certain that he even knows about MCAD is craziness, which is why we "nay sayers" were pushing for Dr. Castells and Akin.  Unfortunately too many patients have gone to the likes of Butterfield or Metcalfe and gone back home empty handed because they didn't fit the SM criteria.  In order to avoid this kind of risk, I for one would much rather send someone whom I KNOW has a reputation for believing in the MCAD diagnosis; Schwartz, Castells and Akin, than one who has no name within the masto arena.  Afrin is only now making his name known in the masto world.   I can say this with pretty firm convictions because I've spoken with many of the researchers out there.  When I am seeking for more recent information I will write personally to these researchers asking them for a copy of their work and I've spoken several times with Dr. Molderings and know his reputation.  This recent work out by both Molderings and Afrin is only in the past few months and Afrin has yet to become a household name.  This is why I was one of those who nay sayed Afrin.  But, this recent work of his shows that he's not only got an open mind as to MCAD, but that he has a very good hold upon masto in general and is indeed worth going to.  

So, please don't be hard upon us for nixing Dr. Afrin.  There was nothing out there to support our suggesting him as a valid option but now that he's proven that he knows what he's talking about, I am one who will most certainly support patients going to see him!


Lisa

Hi Everyone!
I don't post much but have been reading a lot of posts! I, too, see Dr. Afrin and have for almost 2 years now. My experiences with him have wavered between excellent and not-so-excellent (poor). I have done all of the "Afrin" trials: Aspirin therapy, gleevec, sprycel, and now, Tasigna. He is desperately searching for something that will help me, however, I haven't felt that way all along. My husband and I became quite concerned that I was becoming a "guinea pig". They are cute but, well, you know....
The Tasigna is working well for me so far (2 days...lol). I am 4 hours away from Dr. Afrin so my local hem/onc will be seeing me every 7 days for lab and EKG as required by the FDA. I return to Charleston (which I love) on June 13th.
I am available via PM to anyone who might want to discuss anything. xoxo

Hi Heather,
My diagnosis is Systemic Mastocytosis based on the WHO criteria but Dr. Afrin tends to lump everyone into "mast cell disease" or "mast cell activation disorder".  I also have hematological abnormalities. At this point I am willing to try anything to get some sort of relief. I use 3-4 epipens a week for anaphylaxis in addition to all of the other typical masto symptoms. I have been on all of the usual meds for 10 years but only recently seem to be getting worse, hence my dr's decision to refer me to Dr. Afrin.  Thanks for the warm welcome!

Elisha