Some new test results...
As some of you already know, I was down in Boston for a short hospital visit with my specialists a few weeks ago. These doctors are the best in the world for my illness and they recently opened the first clinic in the US that is geared specifically to Mastocytosis. Anyway, while we were down there a few weeks ago, a few different tests were ordered.
We opted to avoid the tests while in Boston for two reasons. The first reason is there is usually a fairly long wait at the lab. Considering this, it would be much easier to just have the tests done by my primary care physician at home. The second reason I avoided the tests in Boston was because the tests take a lot out of me. Just the four hour drive to and from Boston wears me out considerably. That alone would knock me down. Add these tests into the mix and the drive back home is quite lousy. So, we arranged to have all my testing done with my primary care physician this time.
This group of test results (mature tryptase, total tryptase, 24 hour histamine, 24 hour prostoglandin and a breathing test), as always, determine whether or not it is time for another bone marrow biopsy. I have already had two bone marrow biopsies and numerous skin biopsies. (I am one of the rare ones who suffers from both the cutaneous and systemic form of the disease.) Contrary to what most people think, a bone marrow biopsy is not a 'terrible' test. Yes, it is invasive. Yes, it is like minor surgery because they make an incision and then go into bone. And yes, it is a bit painful. But it is not even close to being the worst test I have experienced! (More on the worst test another time.) So, I have no problems with arranging for another bone marrow biopsy.
We monitor various test results, some quarterly, some annually. This illness is not curable but we need to keep an eye on worsening conditions for two reasons. I suppose the main reason is because this illness can lead to all sorts of other secondary illnesses that people find horrifying such as cancers, leukemias, etc. (And, for me, these are secondary illnesses!) The other reason for all these tests for an incurable illness is that because this illness is still being researched, there is a need to track everything. I suppose I could add a third reason too. The test results might show a pattern that the doctors have seen before in patients with failing health. This could give us a timeline and a recommended course of action. So, we track various things quarterly and annually.
My mature tryptase has already come back from the Mayo Clinic... that is elevated again, in the same range as it has been in the past. So that is relatively good news. My primary care physician did not have the results for the total tryptase but I am interested in that number as well and will learn more when I talk with my doc in Boston.
We did a breathing test... it was a 'good' day for me when we did this test... I really was feeling relatively good so I was shocked when they told me my breathing was not all that good. My breathing, on a good day, is at around 77%. So that is not all that good.
We are still waiting for my 24 hour urine results for prostoglandin D2... time will tell on this one, but it has been normal up until now.
I just received my results on my 24 hour urine for histamine. For the first time ever, my histamine is now elevated. My primary care physician did not want to talk about numbers and only referred me to my specialist in Boston. So, we'll see what the specialists in Boston say once all the test results come back.
Tryptase, histamine and prostoglandin D2 (along with many other things) are released by mast cells as they degranulate. I have too many mast cells and they are too active. These mast cells can be active in isolated areas such as skin... or gastro-intestinal tract... or liver... and in a rare few of us, these mast cells are active/overactive in multiple areas, both systemically throughout multiple areas of the body and cutaneously in the skin. So tryptase, histamine and prostoglandin D2 are some markers that are closely watched with this illness.
When we see poor clinical health and an elevation of these mediators (tryptase, histamine, etc), it is time to check the bone marrow again.
There are many things that are watched in the bone marrow but let me explain a couple of the big ones.
We want to know the number of mast cells in the bone marrow since this is where cells are formed. We also look at the shape of the mast cells to see if they show signs of being malignant. Obviously, since many secondary illnesses can develop (cancers, leukemias, etc), other cells are checked here too such as red blood cells and white blood cells to include differentiating leukocytes, monocytes, lymphocyte, etc. So, the bone marrow is where to go to get a much clearer picture of what is happening in the body on a cellular level.
So, the good news for me was that my mature tryptase came back elevated but basically the same as last year. I don't know yet about mature tryptase. My breathing was bad on a good day so that isn't too good but really has no bearing on whether or not to go back to the bone marrow. My histamine is now elevated and that is not a good thing at all. I don't know whether it is just mildly elevated or 'off-the-charts' elevated just yet. If it is elevated considerably, this alone could warrant another bone marrow biopsy. And, we are still awaiting the results of the prostoglandin D2.
We already discussed the plan for this next bone marrow biopsy. I suppose that is an indication that the docs in Boston think we are headed that direction. This next biopsy will be at Dana Farber/Harvard Cancer Center in Boston. I think that will be an overnight stay for Sheila and me.
This info here should get everyone up-to-date on my latest tests. I will post more about this topic as more test results come in and as I hear from my doctors.
We opted to avoid the tests while in Boston for two reasons. The first reason is there is usually a fairly long wait at the lab. Considering this, it would be much easier to just have the tests done by my primary care physician at home. The second reason I avoided the tests in Boston was because the tests take a lot out of me. Just the four hour drive to and from Boston wears me out considerably. That alone would knock me down. Add these tests into the mix and the drive back home is quite lousy. So, we arranged to have all my testing done with my primary care physician this time.
This group of test results (mature tryptase, total tryptase, 24 hour histamine, 24 hour prostoglandin and a breathing test), as always, determine whether or not it is time for another bone marrow biopsy. I have already had two bone marrow biopsies and numerous skin biopsies. (I am one of the rare ones who suffers from both the cutaneous and systemic form of the disease.) Contrary to what most people think, a bone marrow biopsy is not a 'terrible' test. Yes, it is invasive. Yes, it is like minor surgery because they make an incision and then go into bone. And yes, it is a bit painful. But it is not even close to being the worst test I have experienced! (More on the worst test another time.) So, I have no problems with arranging for another bone marrow biopsy.
We monitor various test results, some quarterly, some annually. This illness is not curable but we need to keep an eye on worsening conditions for two reasons. I suppose the main reason is because this illness can lead to all sorts of other secondary illnesses that people find horrifying such as cancers, leukemias, etc. (And, for me, these are secondary illnesses!) The other reason for all these tests for an incurable illness is that because this illness is still being researched, there is a need to track everything. I suppose I could add a third reason too. The test results might show a pattern that the doctors have seen before in patients with failing health. This could give us a timeline and a recommended course of action. So, we track various things quarterly and annually.
My mature tryptase has already come back from the Mayo Clinic... that is elevated again, in the same range as it has been in the past. So that is relatively good news. My primary care physician did not have the results for the total tryptase but I am interested in that number as well and will learn more when I talk with my doc in Boston.
We did a breathing test... it was a 'good' day for me when we did this test... I really was feeling relatively good so I was shocked when they told me my breathing was not all that good. My breathing, on a good day, is at around 77%. So that is not all that good.
We are still waiting for my 24 hour urine results for prostoglandin D2... time will tell on this one, but it has been normal up until now.
I just received my results on my 24 hour urine for histamine. For the first time ever, my histamine is now elevated. My primary care physician did not want to talk about numbers and only referred me to my specialist in Boston. So, we'll see what the specialists in Boston say once all the test results come back.
Tryptase, histamine and prostoglandin D2 (along with many other things) are released by mast cells as they degranulate. I have too many mast cells and they are too active. These mast cells can be active in isolated areas such as skin... or gastro-intestinal tract... or liver... and in a rare few of us, these mast cells are active/overactive in multiple areas, both systemically throughout multiple areas of the body and cutaneously in the skin. So tryptase, histamine and prostoglandin D2 are some markers that are closely watched with this illness.
When we see poor clinical health and an elevation of these mediators (tryptase, histamine, etc), it is time to check the bone marrow again.
There are many things that are watched in the bone marrow but let me explain a couple of the big ones.
We want to know the number of mast cells in the bone marrow since this is where cells are formed. We also look at the shape of the mast cells to see if they show signs of being malignant. Obviously, since many secondary illnesses can develop (cancers, leukemias, etc), other cells are checked here too such as red blood cells and white blood cells to include differentiating leukocytes, monocytes, lymphocyte, etc. So, the bone marrow is where to go to get a much clearer picture of what is happening in the body on a cellular level.
So, the good news for me was that my mature tryptase came back elevated but basically the same as last year. I don't know yet about mature tryptase. My breathing was bad on a good day so that isn't too good but really has no bearing on whether or not to go back to the bone marrow. My histamine is now elevated and that is not a good thing at all. I don't know whether it is just mildly elevated or 'off-the-charts' elevated just yet. If it is elevated considerably, this alone could warrant another bone marrow biopsy. And, we are still awaiting the results of the prostoglandin D2.
We already discussed the plan for this next bone marrow biopsy. I suppose that is an indication that the docs in Boston think we are headed that direction. This next biopsy will be at Dana Farber/Harvard Cancer Center in Boston. I think that will be an overnight stay for Sheila and me.
This info here should get everyone up-to-date on my latest tests. I will post more about this topic as more test results come in and as I hear from my doctors.
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