New and Scared

[Ray Vaughn]

HI. I have been dealing with blood issues for several years. I have a Chromosome 6 Duplication which may be causing this. At any rate, I have low WBC and low platelets which triggered this flags. Platelets clump and I also have macrocystosis and anisocytosis and polychromosia. Has anyone else had these, too? Next step is BMB which I am really freaking over. My Chrom 6 is a big problem and always was. I was born with it and it always caused me so many torubles! This one is the most scary. Just looking for support, ideas, etc.

[Donna]

Hi Ray, As far as the bone marrow biopsy goes, I too was freaking, but I just requested conscious sedation. In fact, I changed doctors because the first one though local and Ativan would do. My current doctor was fine with conscious sedation….awake, aware but no pain….just a little pressure when I imagine it would be pain without the sedation. Donna

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[Tereze Gluck]

Hi ray. I don’t know if I have your exact situation but i sure have everything else. I have chemo-induced MDS – the highest risk, worst prognosis form of the disease. Multiple abnormalities. I’m pretty deveststed and spent the last two days just sitting on the couch trying to absorb this information. Will probably need a bone marrow transplant.

If you’re scared of the biopsy itself, that wasn’t too bad. Normally they just give s local but I insisted they give me drugs /twilight sleep. They gave me Ativan, Demario and Benadryl. I was awake but loopy and the procedure didn’t hurt. Two small twinges but really nothing bad. So don’t be frightened of the biopsy.

The disease itself / well I’m about as bad as it could be! They will start me on Vidaza and see how that works. Best of luck to both of us!

Best,
Tereze

[Nancy Zepecki]

I am also scared, mostly of what
I don’t know. I’m 66 in not so good health. Still waiting on two more tests to come in. Don’t Know if I will do chemo. Having bone pain and weakness. There is so much info out there, its a little overwelmening . I have purchased books, joined chat rooms, you name it. Still confused. What is a round of chemo? How many times a week? Had three surgeries in the last three years. Last one in Dec 17. They almost didn’t go through with it cause platelets to low…How does chemo react to you and for how long?

[Wendy Brizer-Maciol]

My dad was 92, had MDS for over 2 years and passed away last week. He was a complete trooper until the end and was on Vidaza for 13 months. He experienced no side effects. Unfortunately he sustained multiple infections and developed CHF from the anemia. Go for two opinions at MDS Centers of Excellence and don’t worry about the biopsy. My dad had two with no local. He was a World War 11 Marine and fought rhis disease until the end. Best of luck.

[Tereze Gluck]

I’m terrified… every day I seem to get worse. My hand is purple and swollen… I watch the discoloration creeping up my finger. My body is covered in black bruises. I get worse every day – that’s what’s most terrifying. I’m starting vidaza on Monday but I know that even if it works it takes a while to kick in… having a platelet transfusion tomorrow… but I’m really feeling discouraged. Is there any hope out there…? The dr wants to start with vidaza but I’m wondering if I should have a transplant right away, if a donor could be found. Can one live with this much bleeding?

[Richard Carlsen]

Was scared as well have “ night risk “ MDS which affected Hemoglobin and White Blood Cells. Got through a round of Azacitadine, and had no real side effects.
Did unfortunately get an infection in one of the IV lines that they used for chemo.
Was in the hospital with that for a couple of weeks.
All in all the disease is experienced differently by different people. Don’ t pre judge. Things could always be worse.

[Richard Carlsen]

Meant High Risk. Also , agree with the people that have suggested using sedation for BMB. I requested and I’m glad I did.

[Brian Kelley]

I also am scared, my father was recently diagnosed with MDS, he is 75, I am going with him once a week to receive his procrit shot and his Dr has mentioned Vidaza which I know is Chemotherapy, she also recommended Revlimid which I read was for patients that are low risk and they said my Dad is high risk so I’m confused. Prayers to all who are suffering and to caregivers who are assisting love ones go through this terrible disease…

[Richard Carlsen]

Brian
Is the Doctor your father is seeing attached to one of the MDS centers of excellence ? Elsewhere on this site you can find a listing of them.
Remember, you can always seek a second opinion if you are not comfortable with your father’s current Doctor.

Best of luck

[Bob]

I know from experience that even a good hematologist may not know enough about MDS to be helpful. It is definitely worth making the effort to go to a hospital on the Centers of Excellence list. The difference I saw at a Center of Excellence hospital was remarkable.

It also helped me to post and read the posts on The Marrow Forums board. Here is the link to the MDS section of that board. Visit the Board and post your specific issue and ask for a response.

http://forums.marrowforums.org/forumdisplay.php?f=7

• This reply was modified 5 years, 10 months ago by Bob.

[Helen Morehouse]

For BMB request conscious sedation
I have had 3 and do well with local and Ativan
Remember this disease is variable
Think positive outcome You MUST trust your
Physician
Good luck to all🌸

[Brian Kelley]

My Dad is being stubborn and doesn’t want a second opinion… He had to be rushed to ER Saturday because he needed a blood transfusion, they were trying to wait till Monday but he couldn’t wait, now he needs another transfusion and they want to stop his procrit shot and put him on chemo, now they are talking about putting him in a Rehab facility because he’s not getting stronger… He told his sister first the hospital, then Rehab, then hospice.. I hate seeing him like this, a few weeks ago he was working, this is so overwhelming…

[Bob]

It is a very difficult situation. The problem is he does not have enough information unless he has been thoroughly evaluiated at a hospital that specializes in MDS after a BMB. The BMB is no big deal — I did it with no sedation. Not as bad as a visit to the dentist’s office in my opinion. Better to have a sore butt than sore gums.

For me, going to an MDS Center of Excellence was night and day

Right now he does not seem to have even a first opinion.

It’s time for him to think of his family and get the best diagnosis ad the best care.

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