Husband newly dx with RARS-T

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Sha
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Joined: 22 Mar 2013 21:18
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Husband newly dx with RARS-T

Postby Sha » 27 Mar 2013 16:22

He is 63 years old and was diagnosed after a bone marrow biopsy in February with this AND with the Myeloproliferative Disorder Polycythemia Vera with an increased platelet count above the far end of normal. He began taking Hydrea six weeks ago with no side effects. He feels no symptoms but his RBC has gotten lower over the last five years, down to 3.44 now, hemoglobin is 12. We will return to the hematologist in May. Does anyone else have this combination of two different blood disorders?
Thanks,
Sharon
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Husband newly dx with RARS-T

Postby chris » 28 Mar 2013 18:06

Dear Sharon

Thanks for posting and sorry to hear about your husband's diagnosis. This is the right forum to try to find somebody else with a rare combination of bone marrow diseases. I just wanted to clear up a query. You said your husband has MDS and Polycythemia Vera (PV) and has high levels of platelets. My understanding is that this disease (PV) gives high levels of red blood cells and yet you say his levels of these is low? The disease which gives high levels of platelets is called Essential Thrombocythemia (ET) and is another myeloproliferative disease.

Can you let us know which one it is? Also, when you have checked this out, do talk to Sophie Wintrich on the patient support helpline as she may be able to send you more information on this.

As it happens I do know of somebody in our local group in Essex who has this combination of MDS and a myeloproliferative disease and is on the same treatment but I will not ask her to respond to you on this forum until we are sure you are talking about the same disease!

Best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Sha
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Joined: 22 Mar 2013 21:18
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Re: Husband newly dx with RARS-T

Postby Sha » 28 Mar 2013 21:12

Hi Chris,
Thanks for your reply. Also thank you for straightening out the ET.
The Hematologist didn't say It was PV or ET, just said he had a high platelet count and JAK2 gene mutation in addition to having RARS-T .
This is what happened --Someone I know, knew someone with the MPD PV and they had a JAK2 gene mutation and took Hydria so that must be the one he has... No wonder so much didn't make sense!
I would appreciate hearing from anyone who has both RARS-T and ET.

Sharon
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Husband newly dx with RARS-T

Postby chris » 02 Apr 2013 17:21

Hi Sharon

Yes, it's very risky trying to equate other people's treatments with diagnoses!! Having had that clarification from you, I think you will find that the RARS-T diagnosis by itself implies high levels of platelets so I don't think you need to look for anybody with a combination of diseases - just another MDS patient who has RARS-T. As it happens, I do know of somebody who has this but who is away at the moment. Would you like me to ask her to get in touch on her return?

Please also talk to Sophie as she will know all the latest information about RARS-T and the implication of the JAK-2 gene mutation and the effects of the treatment your husband is having. As well as reducing his high platelet level it will probably lower his red and white cell counts and that will need to be monitored and possibly treated.

Best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Sha
Posts: 5
Joined: 22 Mar 2013 21:18
Contact:

Re: Husband newly dx with RARS-T

Postby Sha » 04 Apr 2013 00:23

Thanks! I would like to be put in contact with the other person you mentioned. I'll contact Sophie for info.
Very appreciative,
Sharon
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Husband newly dx with RARS-T

Postby chris » 04 Apr 2013 20:31

Hi Sharon

I have asked the person to respond to you via the Forum and you can then decide if you want to private message each other. It may be a few weeks before she is back so please be patient and speak to Sophie in the meantime.

Hope things become easier soon and you get the support and information you need.

Best wishes

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex

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