[Bonnie Shaffer]

You are so lucky to have a Center of Excellence in your state.

I am on Medicaid so I have to stay within Oregon, which has no Center of Excellence. There is a very good hospital in Portland (OHSU) and I have an Oncologist there monitoring me closely.

Best wishes to you as well!

[Bonnie Shaffer]

Hi Michael,

I also have MDS/MPN.

I was diagnosed with MDS through a BMB in 2020. My mutations were SF3B1, DNMT3A, TET2 and CUX1. I was on watch and wait until this year.

In March my platelets ran up to 1.2 million. Another BMB found I have developed the JAK2 mutation. My Oncologists say this is very rare.

I began taking Hydroxyurea for the high platelets. It worked very well and very fast. Unfortunately it drove my HGB to 8.9 and my white blood cells are below normal for the first time.

I also have level 2 fibrosis in my bone marrow.

My doctors want to keep me off of treatment (except for Hydroxyurea, which I will take for life) as long as possible.

I’m getting frequent blood draws and my Oncologist says I will need to have a Bone Marrow Biopsy within the next five years due to my age. I’ll be 62 in August.

Not sure if any of this helps, but I thought I’d chime in as I know this is a pretty rare diagnosis.

[Bonnie Shaffer]

Hi there,

I have MDS/MPN with RS and Thrombocytosis.

I have had pain in my hip joints that gets pretty bad, but that’s it.

I have not lost weight at all. My appetite is normal.

Losing that much weight in 5 months is concerning. Maybe go for a 2nd opinion? Maybe there is something else going on?

Best of luck.

[Bonnie Shaffer]

Hi Carol,

I did not get my surgery. They offered to try again with better matched platelets, but I declined.

They did not really know what caused the reaction and I didn’t want to go through that again.

I am doing contrast breast MRIs every 6 months.

So sorry you are dealing with this.

Sending good thoughts.

[Bonnie Shaffer]

Hi Carol,
I had a failed platelet transfusion while I was being prepared for a preventative double mastectomy due to having the BRCA1 gene.

All hell broke loose about 9 minutes into the transfusion. My blood pressure went from 144/75 to 60/30 in minutes. I threw up, had a bowel movement, my temperature spiked and I itched all over. The surgery was cancelled due to the severe allergic reaction.

The Doctor mentioned that she had given my B+ platelets (I’m O negative) and that some red blood cells might have gotten into the platelets.

I did some research and found that up to 30% of people have a reaction to a platelet transfusion.

I would urge your Dr. to match the platelets to your blood type, even though normally platelets do not need to match your blood type.

Best of luck to you and I hope everything goes well!

[Bonnie Shaffer]

I used to have a lot of bruises. And they would last a long time. It was one of the symptoms that lead to my MDS diagnosis.

I actually had a hematoma the size of a quarter in my bicep and a huge bruise from winding a ball of yarn! I’m 61.

My Hematologist said these things are going to happen.

Now my platelets are slightly high and I am not bruising so much.

What a rollercoaster!

[Bonnie Shaffer]

Congratulations! That’s wonderful!

[Bonnie Shaffer]

Hi Siobhan,

That’s an interesting question. I also noted that TET2 was not included. My hematologist mentioned that they were working on which mutations to include in the calculator so maybe they found that these were not significant mutations? Not sure but very interested.

[Bonnie Shaffer]

I have very low risk MDS and my doctor scheduled an appointment for me immediately. Got my 3rd Pfizer shot on Monday.

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