Thank you so much for all of the hugs and jingles!
Friday was rough. There was some good news and then some not so good news. The good (really good!) news is that they didn't find any abnormal mast cells on the biopsy, so it's not acute systemic mastocytosis which therefore means it's not cancer
The bad news, however, is that the diagnosis is Secondary Mast Cell Activation Syndrome. This means that I don't qualify for stem cell therapy because though my mast cells are behaving abnormally, they are being produced normally and in relatively normal numbers.
So we're going to try two things; the first is a drug called Gleevec which is usually used for leukemia, but because it's a tryptase inhibitor it works to inhibit spontaneous degranulation of the mast cells (the break down of mast cells is what causes an allergic response in all people, not just people with mastocytosis or MCAS). It's relatively safe, has a few unpleasant side effects, but it is given by mouth so that's a huge plus.
The second is a drug called Actemra. It inhibits the cytokine interleukin-6 which they found I make significantly more of than the average person. There is a question as to whether or not all of the crazy immune responses I've been having (even when on other immunosuppressants) have been driven by this overabundance of IL-6 and my oncologist wanted to give it a go. If nothing else, it'll help my joints and eyes feel better, but he hypothesized that this may also help to quiet the mast cell response. I'll go twice a month for the first three months for a 6 hour infusion and then once a month after that for 4 hours.
As good as the news is that this is not cancer, the issue is that there is no real treatment. I was so hoping that by this time next year, I would be able to take antibiotics like a normal person, eat regular foods without worrying about hives and anaphylaxis, go out in the cold without 16 layers, and not feel so damned brain fogged, tired, and gross all the time. My doctor said that these symptoms should get better, but I'll still need IV steroids and benadryl with all antibiotics and narcotics and of course during surgery.
So I still feel like a ticking time bomb and part of me was very upset with the diagnosis because I just feel like I'm at the end of my rope. I am so sick of being diagnosed, misdiagnosed, and treated without any real progress. I guess I'm just sick of being sick. I'm thankful that I can still enjoy my horses and spend time with my friends and family, but it's hard to feel so restricted all of the time and to always be worrying about the next time I eat the wrong thing or catch the wrong bug. I guess I was just hoping for a better chance at a normal life than this diagnosis offers.
I start the drugs next week and I've signed up for some classes to keep me busy while we give this a go, so I'm definitely looking forward to that. I am still going to meet with my estate attorney and get a plan in place, just in case something doesn't work out. But for now, I'm going to keep chugging on and hoping that things start to improve over the next few months.
So thank you all again for your kind words and thoughts. It really means so much to me.
For anyone who is curious about what I have (or if you've ever had any weird allergy symptoms you can't explain) here is a great, short read that explains mastocytosis, MCAS, and idiopathic anaphylaxis very well: http://www.mastocytosis.ca/MSC%20Pat...0April2012.pdf
Nine out of ten times, you'll get it wrong...but it's that tenth time that you get it right that makes all the difference.
I'm sorry about the mixed bag of results, but very pleased to hear that you are looking forward to enjoying your horses, family and friends. I get the "sick of being sick" thing.
My brain cancer buddy became very good at wringing the joy out of whatever he was doing at the time. A total love addict, the man left a bad marriage and has had three different girlfriends, each providing better love than the last since his initial diagnosis.
I think he is gradually developing better taste in women (bless his heart), but he's digging the process of being with them as they come. I'm not sure he would have left his wife had he not been shown that life is finite.
Thank you for giving us the update! I am so glad it is not cancer. I read your link, and you really have been dealt a difficult hand. Are there any support groups (unlikely just for this) for you?
Many people have to deal with bad situations. I have an autoimmune condition; I spent the first year of my diagnosis asking "Why me?". Finally, I was thinking the usual "why me?" when I answered myself "why not you?" I believe this was my turning point to accepting my condition, and therefore being able to move on with my life. You may well be different, but I tell this story in case it helps you on your journey.
I wonder if there are any clinical trials you can participate in?
Anyway, just glad and grateful that the diagnosis was not as bad as it could have been.
Very glad it's not cancer, but I'm sorry it wasn't the best result. I can't imagine how hard it is. If you ever need to talk or anything, feel free to PM me. Jingles, prayers and good thoughts are coming your way!
Charlie Brown (1994 bay TB X gelding)
White Star (2004 grey TB gelding)
you dear sweet girl.......and i call you girl because you are close to the age of my daughter...........i wish we coul;d all take a tiny bit of this burden and remove it from you...........
i too was wondering about clinical trials..........
or, going to someplace like mayo clinic? (i don't know where you live)
Thanks for the update -- so good to hear it's not cancer! I know you still have a very tough journey ahead of you; I only hope that treatment will come one day and things will improve. Thinking of you and sending lots of hugs!
Glad to hear it's not the worst, yet sorry it is still 'something'. ...and that you'll be on meds for some time to come. Here's to a possible cure down the road, or at least very reduced symptoms, with the least amount of treatment.
You're an inspiration, and so glad you have your family and your horses to continue on so well.
Being right half the time beats being half-right all the time. Malcolm Forbes
Windward Farm, Washougal, WA- our work in progress, our money pit, our home!
Good news is good news! Chin up, look forward and know that you have a hundred (more?) supporters, huggers, butt kickers, pull-up-your-big-girl-underpants admonishers and enablers right at your finger tips here. You are alive and kicking! Embrace that and hope that a treatment plan can be found and it will work for you.
Last edited by Calvincrowe; Nov. 26, 2012 at 12:43 AM.
Proud member of the "Don't rush to kill wildlife" clique!