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Old Mon Nov 12, 2018, 11:24 AM
wifemomof5 wifemomof5 is offline
Join Date: Nov 2018
Location: Tennessee
Posts: 1
New here- know nothing about bone marrow

This is my first post here. I am looking for some help in understanding some of this. My husband doesn't have a diagnosis yet. He has been feeling lousy for over a year but thought it was related to stress or diet or something. He tried making various lifestyle changes but nothing made it better. Over the last few months he has regressed pretty badly. He feels horrible all the time, sleeps much of the day, feels weak, has lost weight, has weird bruising, things aren't healing right and he is in a lot of pain. He also randomly starts sweating profusely while doing nothing, like just sitting in 40 degree weather. So he went to the doctor and his CBCs indicate elevated white blood cells and elevated platelets with no sign of infection. I don't know the numbers exactly, but his doctor believes it is bone marrow related and has referred him to a hematologist. She said maybe auto-immune or osteomyelitis (bone infection I guess?) but then everything I see on the internet makes that sound more like leukemia. And do hematologists normally treat osteomyelitis?

I know I need to stop googling symptoms but I am so freaked out. I am currently 7 months pregnant with twins, our 4th and 5th children. We have another set of twins who are 2. I have had a very rough pregnancy and with him being so sick it has been extremely challenging to take care of our other children. He has had to take a lot of unpaid time off work (he is self employed) and I have had to take on extra jobs where I can. I just want him to be okay for when the new babies come. We are rapidly running out of money because he hasn't been able to work as much and we just moved and have two mortgages currently while trying to sell our old house which keeps having contracts fall through.

They haven't been able to set an appointment yet with the hematologist but are supposed to today or tomorrow. I guess I am just looking for some kind of reassurance or to know what to expect to happen next. I guess they will do a bone marrow biopsy? I hear those are really painful? Is there like a recovery time from it or what should we expect?

Before Friday when the doctor called with results, I had never considered bone marrow as a variable in any area of my life. I know nothing about it, have never known anyone with any issues with it. I assumed he had like some thyroid issue or something easily resolvable with minor medications.

Anyway, I don't have a lot of people to talk to about this, so I thought I'd reach out on here. I appreciate any words of encouragement or support!
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Old Mon Nov 12, 2018, 05:31 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 587

I wish that I could give you more reassurances, but I think that you are in that difficult place of not knowing enough to worry or relax about the situation, and sorting this out can take a little bit of time, test, and observation.

Elevated wbc and platelets with weird bruising could be related to a number of issues and are symptomatic, not the driving factors.

As for the bone marrow biopsy, I have had about 24 of them since 2010, and while they can hurt, it is usually worse if you have low platelets. There is pain for a day or two to a few days, but it is rarely debilitating. If your husband has a choice, have them use the drill instead of doing it manually as it is faster and less painful.

Some doctors will use short-acting sedation for the procedure as well, although with the drill, that seems a little overkill.

Best bets going forward, document all symptoms, times of day that they are happening, location of aches and pains, how long they last, what they respond to - ibuprofen or tylenol or whatever he is taking, if anything, any question you have, write it down and ask in your next appointment, because you will inevitably forget a symptom that you are concerned about, or miss a question that you had without the list.

I wish you both the very best in the coming weeks.
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Tue Nov 13, 2018, 07:44 PM
JoMac53 JoMac53 is offline
Join Date: Sep 2017
Posts: 75
Must be a scary time for you in your situation, Wifemomof5. My husband had a serious brain injury when I was pregnant with our 4th. Pales in comparison but it was scary for me at the time.

I can only address the bone marrow biopsy. I was a nervous wreck and put it off for weeks. I would literally begin shaking in my doctor's office when we tried to discuss it, because of the horror stories I'd read online. I wanted IV sedation but oncologist said they couldn't do that in the outpatient setting. Finally, he agreed to prescribe Ativan, taking one on arising the morning of the procedure and another a half hour before it. It alleviated the anxiety and also had an slight amnesic effect so I didn't remember much of the procedure afterwards. One nurse and I laugh about it to this day because she held my hands and her face was right in mine but when I met her at the clinic a couple of weeks later for the results, it was like I was meeting her for the first time, I had no recollection of her being there during the procedure.

And the procedure didn't hurt at all. I felt the needle for the local anesthetic but that was no worse than a blood test, really. Then I felt tugging and pressure feelings but no pain. I've had two now following the same procedure with the same doctor.

I hope this helps. And I hope things work out for you all.
Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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