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Two Strikes at Once

I’m 56, disabled, but still here. At 49 I was having terrible headaches, so bad I went to my primary, crying, telling her she has to do something. After taking blood, I finally got some pain meds via injection. Days later I found my platelets were extremely high, made it up to 904,000 at one point. I have a little bit of medical background, so I started researching what causes the elevated platelets. Discovered it was myelofibrosis, which was confirmed via bone marrow biopsy. Not fun…

Seeking a second opinon

I then went to Dana-Farber in Boston, for my second opinion. They took 13 vials of blood! And verified the first diagnosis. I had two doctors, both Phd’s, working on my condition. They said I had about 8-10 years. But not long after this, via PET scan and needle biopsy, I was additionally diagnosed with Non-Hodgkin lymphoma. I had two large tumors against my patriotic aorta. (Mid abdomen, against the largest blood vessel you have). After much debate and research, I went through a round of chemo: Rituxan. No changes. So then another series of chemo treatments of Rituxan and Bendimustine. That I felt!

Misdiagnosed

I was tired all the time, slept, had to really pull it together to take the dog out. I was taking over 60 pills a day. And… another doctor misdiagnosed me with psoriatic arthritis. She treated me with meds for months before another doctor said, “wrong, you dont have psoriatic arthritis “. I dont know if I was relieved or mad. Being treated with meds you dont need is not good.

So now, 8 years from original diagnosis, I’m getting more tired, sleep alot, take 25 pills a day, and am in limbo. Not exactly sure where I stand, or what’s happening with me. I see my MD in two weeks. Might push for another bone marrow biopsy then.

More to follow….

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Comments

  • Ann Harper moderator
    3 months ago

    You are really going through a lot. I hope you are able to find relief with the doctor you are going to see. Good luck to you. I will say a prayer you get the answers you need. Please keep us informed.

  • Daniel Malito moderator
    7 months ago

    @mpn-nhl-mike I have spent almost 30 years in limbo, albeit not necessarily inbetween life and death, but certainly in a place that never seems to lock in. So I know a bit at least of what you are feeling. There are a ton of us here that are in very similar positions, so, thanks for sharing and if you need anything, don’t hesitate. Just keep on keepin’ on, DPM

  • Yolanda Brunson-Sarrabo moderator
    7 months ago

    Wow! @mpn-nhl-mikem so sorry you’ve had a time with the bone marrow biopsies. Unfortunately, I too can relate. My first experience it was suggested my husband not support me in room, as many have been known to faint. I had to endure my first experience alone, though my husband was in the waiting room. Let’s just say my screaming could be heard in the waiting room. The next go around with another facility was way better, yet still, an uncomfortable and painful experience- yet better, if that makes any sense. You were fortunate to get an IV, many doctors ween away from that option. Many who are good try not to order this procedure as often, it really depends on your situation.

    I’m sorry to also read of your misdiagnose; it’s unfortunate when they don’t get it right the first time, after doing so many lengthy tests. Please let us know how things turn out in 2 weeks. Positive energy your way.
    Best!

  • Ann Harper moderator
    3 months ago

    I’m sorry the bone marrow biopsy was so painful and you had to go through it on your own. Hopefully, you won’t have to go through any more.

  • Mpn-nhl-mike author
    8 months ago

    Bone marrow biopsy.
    When I went in for my first biopsy, it was at my oncologists office. They had the infusion area just behind the exam rooms, and off of this was one procedure room. Non sterile, not meant for anything big, but for a small biopsy, it was ok. A nurse started an IV and gave me 3mg of Ativan. I told her that wouldn’t do anything, as I take one to two a day anyway. She didn’t take my hint. The doc came in, cleaned the area on the rear.of my hip, and said a local wont do anything, as it wont fo through the periostum. So here he goes. Once he hit that area, I went through the roof! We decided right away this wasn’t going to work, and he scheduled the next try in the OR so that they could sedate me.
    Soon that day came. They set ne up with an IV and as they wheeled me down the hall, they slowly started the meds… Propofol & Versed. They call it ‘Milk of Amnesia’ as you dont remember a thing. I woke up in my room and didn’t know a thing. Not a bad way to catch some sleep.

    The second one was much, much different. I was at Dana-Farber, and out of the blue my oncologist says, ‘how about we do a bone marrow biopsy?’ I said now? I’d have to get ready for this, how can we do it now? I forgot I was in the best cancer center in the world, and they do this procedure a dozen times a day. They walked me into a regular exam room, started an IV, and I laid down on the table. There was the DR doing the procedure, the nurse monitoring my vitals, a other rubbing my shoulders, and one assisting the doc. I was awake and conscious to the whole thing, talking just like nothing was happening, and the doc was explaining what he was doing. All of the sudden he said he was done! Never felt a thing. A complete opposite from the first one. I need another soon, and I’m contemplating driving to Boston for it…3 hrs away. Or I could just have it here and be home in an hour.
    So for anyone thinking of having one done, my advice is to relax, breath, and trust the MD. If they sound like they know what they are doing, you are all set. Or just go to Dana-Farber and leave the rest to them.

  • Ann Harper moderator
    3 months ago

    What a difference it your two experiences. At least you know what to expect for your third one and you have options. Good luck to you.

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