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  1. #1
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    Default On Oncologists and Bone Marrow Biopsies (long, vent)

    Tonight at 5 pm, I am meeting with my second opinion at Mayo Clinic. My first opinion was at the Dana Farber just a few weeks ago and his very short response was "there's something quite wrong with you, but it's not a Mast Cell Activation Disorder; the one (yes, one) patient I had with MCAD 25 years ago developed mastocytic leukemia and died. You're not dying, so that's not what you have."

    Yeah, but my tissue cultures from my last two surgeries showed aggregated mast cells which stained for CD-25. That's the number one criteria for diagnosing MCAD or Mastocytosis. And by the way? The top MCAD researcher in the USA - who just happens to be a colleague of yours at the Brigham in Immunology - seems damned sure that this is what's going on. And oh, by the way? He's seen a WHOLE lot more than one patient with the disease. I'm not here for your opinion, I'm here because I need your blessing for a bone marrow biopsy.

    Sigh. I've been at this long enough and been sick for long enough that I should know better not to get my hopes up. Not to ever believe that a physician is going to actually listen to me and see the whole picture. Hell, I even started with a concierge medicine practice thinking that if I were PAYING for these services, someone would actually pay attention. After 6 months of care, he sits me down and says that my case is so complicated that just keeping all the notes from hospitalizations/surgeries/specialists straight is the equivalent of taking care of 5 other patients and he simply can't handle it.

    I get that the combination of the things I have is unique and overwhelming. It's even more overwhelming to live with it day to day. But I'm so tired of being seen as pieces of a puzzle. The geneticists only want to see the Ehelers-Danlos, the rheumatologist only wants to talk about the Ankylosing Spondylitis, the Cornea specialist only wants to write papers about my almost unprecedented presentation of Posterior Scleritis at 13. The endocrinologist is only interested in the thyroid nodules that come and go...and only when they're able to be biopsied. But he sure got excited when my TSH finally crashed in a big way. The dermatologist's only interest in the Scleroderma en Coup de Sabre is when it's grown. And it took a very nasty fungal infection and an ENT, the ONE doctor who has always been firmly in my corner to suggest the Mastocytosis and actually do something to follow through.

    If someone would just look at the big picture and realize that there are really only two overarching components; a genetic collagen disorder and a malfunction of the immune system. That's it. We can't fix the genetic component, but we can get a better handle on the immune system, and the answer is NOT yet another anti-TNF and low-dose chemo to shut down as much of the immune system as possible without making me chronically neutropenic. Let's just take a bull to the china shop, shall we?

    If there weren't something already seriously wrong with me; if I didn't have serious reactions to a vast majority of foods to which I have no known allergy, if I didn't have to be in the ICU on steroids and IV Benadryl every time I get a minor bacterial infection because I develop anaphylaxis with every known antibiotic, if surgery or post operative pain control didn't require a central line and more steroids than I'm able to tolerate because I've had vascular collapse while under anesthesia...then fine, I'd stop looking. I'd stop asking questions and flying all over the country and banging down doors and begging for answers.

    But I simply cannot live like this. I can't. I'm scared every time I eat something, even something that I've never reacted to. Because I never know if that food has been exposed to something that contains a lot of histamine and that's going to trigger a reaction. I'm scared to be out in public because I'm scared of picking up an infection that's going to land me back in the hospital. I'm scared of the next surgery, and the next, and the next. Because they could all kill me. It's turned me into a compulsive hand washer and a compulsive cleaner. I take Benadryl around the clock. I spend close to a thousand dollars a month on high-quality vitamins and my D, A, and E levels are all in the toilet because I have a major malabsorption issue that no one has addressed.

    A diagnosis, and quite possibly my sanity, hinges on this new oncologist agreeing to a bone marrow biopsy. Because that is going to be the only way to definitively diagnose either MCAD or Mastocytosis. And with a definitive diagnosis, there is actually honest-to-goodness treatment. Treatment that works. If my mast count is above 25%, I'll qualify for a stem cell transplant. That could put every last immunological issue I'm dealing with into remission...for the rest of my life. And as huge and as scary as that treatment is, the idea that I could live like a normal person? Wow. Just...wow. That would be the greatest gift anyone could ever give me. To not feel like a prisoner in my body.

    And I feel like everything hinges on this appointment at 5 o'clock. The 114 mile drive to Jacksonville is going to be the longest of my life.

    tl;dr

    There are more awful physicians than good ones. Being sick sucks. And as much as I want to have the bone marrow biopsy to finally get a diagnosis, it is going to be the least pleasant procedure I've had (while awake) to date. Note to self and others; don't watch videos on Youtube beforehand, it'll only scare you!

    Wish me luck.
    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.



  2. #2
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    Dec. 18, 2006
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    NY
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    Default

    Quote Originally Posted by Punkie View Post
    Tonight at 5 pm, I am meeting with my second opinion at Mayo Clinic.

    And I feel like everything hinges on this appointment at 5 o'clock. The 114 mile drive to Jacksonville is going to be the longest of my life.

    Wish me luck.
    Wow...good luck!!!!!!

    I am so sorry for what you are going through. I have a good friend with a blood clotting disorder and MS, and a variety of other issues and you sound like she does right now. It's overwhelming just trying to keep up with the testing, but living with the constant stress of a serious illness must be almost unbearable. Her doctors don't seem to work together very well, either, so she is always trying to know what to do - she tore her ACL this summer and it's been a constant battle between hematologists and neurologists, and other experts just to have something done that most people would consider fairly routine, and some days she just runs out of patience with the world.

    I hope you have someone going with you today? For the drive and also for the moral support?

    Sending positive thoughts your way and keeping my fingers crossed that you get an answer and a treatment.



  3. #3
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    Aug. 2, 2000
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    Chesterland, OH USA
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    Default

    Good for you to be so educated and taking charge of your health!
    I wish you the best of luck today and hope you can get the answers you need.



  4. #4
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    Jul. 13, 2008
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    Northern CA
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    Default

    Good luck getting all your docs to talk to eachother! I know it's not easy. I hope your bone marrow goes well and gets you the answers you need. I used to be a pathology assistant and had to assist during bone marrows. I hope I never have to have one.



  5. #5
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    Nov. 13, 2009
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    Default

    I am wishing you so much luck right now that you find the answers you are looking for!

    What you have gone through is just...wow. I'm so sorry and I hope that this next appointment is the one that changes your life for the better!



  6. #6
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    Apr. 28, 2008
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    Default

    Thinking of you. You are inspiring, with all your health difficulties and how much you still manage to do with the horses. Jingles for a manageable and good diagnosis soon.



  7. #7
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    Oct. 25, 2010
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    Good olde Hazard Co. Maryland
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    Default

    Although I don't wish a bone marrow aspiration on anyone, I do hope you are able to find out for sure. Good luck.

    My Dad had 3 and it was the only time I ever saw him cry. I felt so bad. The first one, I was in the room with him and I about lost it, even with an EMT background.

    Please let us know what you find out.



  8. #8
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    Nov. 10, 2008
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    Gillett PA
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    Default

    Good luck.

    My BIL is currently at his oncologist getting his marrow transplant scheduled. He has Hogkins. Cancer just plain sux!


    1 members found this post helpful.

  9. #9
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    Mar. 23, 2005
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    SFBay
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    Default

    Getting doctors to listen to you and to talk to each other is the worst part! I too have a rare chronic medical condition, and finding specialists who will understand complicated medical conditions and work collaboratively is awful. Luckily my condition is chronic but stable, I can only imagine what you are going through. Best of luck.



  10. #10
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    Jan. 27, 2002
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    new england,,usa
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    Default

    good lord your conditions sound horrible to live with. i'm so sorry for you, no one should feel the way you feel.


    i'll be jingling like crazy for you.



  11. #11
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    Feb. 20, 2010
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    All 'round Canadia
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    Default

    Good luck!

    I think what's happening is one of the difficulties in the system, that there is no designated "quarterback" who has all the information from all the specialists, whose job it is to have/see the whole picture. The specialists and sub-specialists generally do only see a piece of the puzzle, and in my experience working in the US system specialists often don't talk to each other; they'll talk to the primary doc, but they don't really conference with each other to marry up the puzzles.



  12. #12
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    Feb. 19, 2009
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    Default

    As for the doctor thing, I totally understand. Its like the this whole disjointed machine that doesn't work well together. My dad went through it when he was diagnosed with cancer. Despite being treated at Stanford, the doctors didn't seem to know their heads from their asses at times. Not to mention the multiple misdiagnoses he had leading up to going to Stanford. It was pretty insane.

    So some major jingles for you, I really hope you get the resolution and treatment that you need.



  13. #13
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    Jan. 17, 2008
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    Dutchess County, New York
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    Default

    Punkie, GOOD LUCK!!!!

    You are so brave, and so articulate! I will be thinking of you at 5:00.

    No matter what happens, Winston Churchill said it best:

    When you are going through hell, keep going.



    And I'm sorry because undoubtedly you've tried lots and lots of things; if you haven't already, you could try giving up gluten for a couple of weeks and see if it makes any kind of difference.

    Hugs to you.



  14. #14
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    Aug. 30, 2011
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    Massachusetts
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    Default

    Punkie, no advice, but lots of ((HUGS)) and jingles!! Much sympathy for all of the crap you are going though!!!



  15. #15
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    Sep. 8, 2006
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    Fredericksburg, VA
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    Default

    Thank you for putting my unemployment (complicated by some other serious stuff) into perspective--seriously. STAY STRONG and best wishes for your appointment Punkie!!!



  16. #16
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    Oct. 30, 2008
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    Default

    Jingles!!!!!!!!!
    Flip a coin. It's not what side lands that matters, but what side you were hoping for when the coin was still in the air.

    You call it boxed wine. I call it carboardeaux.



  17. #17
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    Feb. 16, 2007
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    My very own sliver of heaven.
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    Default

    Thanks everybody, your replies mean a lot to me!

    The animals and my family have been the only saving grace in this whole big mess. Having the farm gives me something to focus on other than my health and when I'm up for it, something to do (ride/stalls/drag paddocks/groom/mow/etc.) that is productive but solitary. And when I'm not up for it, I have help that allows me to rest and take care of myself. My family has been incredible and has been 110% supportive emotionally and financially which has allowed me to focus on getting better instead of trying to figure out how I'm going to keep everything afloat. I don't think I can ever express just how grateful I am to them.

    Unfortunately, I missed my appointment tonight. I hit wall-to-wall traffic on 295 in Jacksonville and was over 45 minutes late. They were walking out as I was walking in. So essentially I spent 5 hours in the car (round trip) for nothing However, they're able to fit me in tomorrow afternoon after my appointment with rheumatology, so I'm very hopeful that I'll have a biopsy date by then.

    To the poster who suggested going gluten free (a great idea!), I've been gluten free for quite some time now...as well as soy free, cow-derrived dairy free, preservative free, dye free, processed sugar (and foods in general) free, berry free, nightshade free, alcohol free...well, you get the picture. I basically eat organic (approved low-histamine) fruits and veggies, a little bit of organic, free range chicken and beef, organic eggs on rare occasions, wild caught fish, and probably 3 kinds of nuts. And that is the extent of my diet. And even then, once in a while I'll still have a weird and unwarranted reaction. I had scallops and green beans for dinner (a very common meal for me) and now I'm itchy, red, and have mega brain fog. It's absolutely miserable.

    So it's another night of waiting. But maybe, just maybe by this time tomorrow, I'll have some direction.
    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.



  18. #18
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    Aug. 25, 2008
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    149

    Default Transplant

    Hi Punkie,

    My background is oncology/hematology/bone marrow transplant so if you have any questions I will try to help.

    Has anyone discussed ATG treatment with you? I had one scleroderma patient and we used equine ATG on him as an immune suppressant. I guess I'm saying there are other means of immunosuppression than chemo.

    Also for the bone marrow biopsy (bx) often they infiltrate lidocaine in the area pre bx and often pt tolerate it well. If you have found the procedure still to be uncomfortable you can ask for light sedation. Not general anesthetic but what they call conscious sedation. Often midazolam is used in small amounts. It has anesthetic effects and you will forget what happened while you had the drug. I had it when I had my stomach scoped and it was amazing, I was so afraid to get the procedure done and it went without a hitch.

    As far as transplants go there are Auto (stem cell from yourself) and Allo (stem cell from a matched donor). Which were they thinking about for you?

    I wish you the best. Dealing with the medical system can be frustrating but hopefully you can get some answers.


    1 members found this post helpful.

  19. #19
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    Feb. 16, 2007
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    Quote Originally Posted by Moogles View Post
    Hi Punkie,

    My background is oncology/hematology/bone marrow transplant so if you have any questions I will try to help.

    Has anyone discussed ATG treatment with you? I had one scleroderma patient and we used equine ATG on him as an immune suppressant. I guess I'm saying there are other means of immunosuppression than chemo.

    Also for the bone marrow biopsy (bx) often they infiltrate lidocaine in the area pre bx and often pt tolerate it well. If you have found the procedure still to be uncomfortable you can ask for light sedation. Not general anesthetic but what they call conscious sedation. Often midazolam is used in small amounts. It has anesthetic effects and you will forget what happened while you had the drug. I had it when I had my stomach scoped and it was amazing, I was so afraid to get the procedure done and it went without a hitch.

    As far as transplants go there are Auto (stem cell from yourself) and Allo (stem cell from a matched donor). Which were they thinking about for you?

    I wish you the best. Dealing with the medical system can be frustrating but hopefully you can get some answers.
    Wow, Moogles! Thank you for the reply!

    I've done everything from Azulfidine (allergic) to Plaquenil (caused hallucinations) to 7 years of MTX (handled it well, but started developing weird WBC numbers and superclavicular nodes; though now the nodes are being attributed to the Masto), to Enbrel (no luck), Humira (mild allergy) and Remicade (full blown anaphylaxis within 10 minutes of the infusion). I've done Cellcept as well (just made me really sick). I am IL-6+, so Actemra was the next line of defense and then my ENT found the fungal infection so it was a no-go. However, according to my rheumatologist and immunologist, it won't have a lick of an affect on Mastocytosis or MCAD.

    ATG has never been discussed because I had such a severe reaction to Remicade which is a mouse chimeric monoclonal antibody. CMAs can release a HUGE amount of histamine which is extremely dangerous for me because of mast cell overproduction.

    The transplant will be allographic; both my dad and my aunt are an HLA match, however there has been some discussion on whether this is ideal in my case. I am HLA-B27+ which is what precipitated the Ankylosing Spondylitis and Posterior Scleritis. My immunologist has not provided me with a definitive answer as to the risk of reactivation of the disease state should we reintroduce as mutated HLA-B. I am not educated enough on the procedure to know if introducing a healthy HLA-B complex into the immune system of a person who is an HLA-B mutant is a safe/viable practice. But I'm not worrying about this too much until I know if I qualify for the transplant for sure.

    Unfortunately, sedation is not an option for me. I react pretty violently to all sedatives, anesthetics, narcotics, and opiates (all cause massive histamine release), so in order to so much as take Adivan or receive Versed, I require 125 of IV SoluMedrol and 50 of IV Benadryl. This poses the possibility of compromising the biopsy results in regards to mast cell count. Of course it won't change the shape of the cells or whether or not they stain for CD25, but it could mean the difference between making it over or under that 25% cutoff. I have historically done well with lidocaine, so I am hoping that they'll at least offer the infusion that you mentioned; that would be nice!

    Two of my very dear friends are taking me and we're going to spend the night in Jacksonville beforehand and enjoy ourselves a bit. So I'm focusing on finding fun things to do instead of how much the next day is going to stink!

    Again, thanks so much for the reply, and I may very well be in touch as things start to solidify. If I have to go the stem cell route, I'll definitely have some questions!!
    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.



  20. #20
    Join Date
    Aug. 25, 2008
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    149

    Default

    Quote Originally Posted by Punkie View Post
    Wow, Moogles! Thank you for the reply!

    I've done everything from Azulfidine (allergic) to Plaquenil (caused hallucinations) to 7 years of MTX (handled it well, but started developing weird WBC numbers and superclavicular nodes; though now the nodes are being attributed to the Masto), to Enbrel (no luck), Humira (mild allergy) and Remicade (full blown anaphylaxis within 10 minutes of the infusion). I've done Cellcept as well (just made me really sick). I am IL-6+, so Actemra was the next line of defense and then my ENT found the fungal infection so it was a no-go. However, according to my rheumatologist and immunologist, it won't have a lick of an affect on Mastocytosis or MCAD.

    ATG has never been discussed because I had such a severe reaction to Remicade which is a mouse chimeric monoclonal antibody. CMAs can release a HUGE amount of histamine which is extremely dangerous for me because of mast cell overproduction.

    The transplant will be allographic; both my dad and my aunt are an HLA match, however there has been some discussion on whether this is ideal in my case. I am HLA-B27+ which is what precipitated the Ankylosing Spondylitis and Posterior Scleritis. My immunologist has not provided me with a definitive answer as to the risk of reactivation of the disease state should we reintroduce as mutated HLA-B. I am not educated enough on the procedure to know if introducing a healthy HLA-B complex into the immune system of a person who is an HLA-B mutant is a safe/viable practice. But I'm not worrying about this too much until I know if I qualify for the transplant for sure.

    Unfortunately, sedation is not an option for me. I react pretty violently to all sedatives, anesthetics, narcotics, and opiates (all cause massive histamine release), so in order to so much as take Adivan or receive Versed, I require 125 of IV SoluMedrol and 50 of IV Benadryl. This poses the possibility of compromising the biopsy results in regards to mast cell count. Of course it won't change the shape of the cells or whether or not they stain for CD25, but it could mean the difference between making it over or under that 25% cutoff. I have historically done well with lidocaine, so I am hoping that they'll at least offer the infusion that you mentioned; that would be nice!

    Two of my very dear friends are taking me and we're going to spend the night in Jacksonville beforehand and enjoy ourselves a bit. So I'm focusing on finding fun things to do instead of how much the next day is going to stink!

    Again, thanks so much for the reply, and I may very well be in touch as things start to solidify. If I have to go the stem cell route, I'll definitely have some questions!!

    One of the cool aspects of the Allogenic transplant is the fact it replaces the host immune system. One of the studies we are looking at is if a host has "x" allergy do they lose that allergic response to an allergen if the donor is not allergic to "x". One example is severe asthmatics.

    Anyhow, I'm curious what your reaction was to the mouse product. We expect people to react and often heavily premed with Tylenol and iv steroids. The equine ATG is different than the mouse but still premed people as it is a chimeric product. This means since it isn't fully humanized the body will react.

    In regards to the Mtx, it is a chemo that can lower counts, but low doses are often well tolerated as you noted. We use high dose Mtx for certain cancers and low dose Mtx as graft versus host prevention in our Allo patients. Basically all these treatments are immune suppressants, as you know. There are so many cool drugs out there and amazing study drugs so I'm sure there are other options. Part of the problem is finding a good facility that is willing to try. I'm in Canada and have worked in 3 transplant centers, by far some are more wiling to try novel therapies than others. As far as I know Seattle is an amazing facility if you do consider the transplant route. I would also look into studies if possible as well.

    I wish you the best and always ask lots of questions.


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