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MDS Myelodysplastic syndromes

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Old Wed Oct 17, 2018, 11:51 AM
Agility Junkie Agility Junkie is offline
Join Date: Oct 2018
Location: Ontario, Canada
Posts: 2
I am back

Hi Folks,

I had to re-register after being away for many years, my former label was LynnI. I hope I will see some familiar names and you are all doing well.

This past year brought me to a 10 year milestone of no disease, no treatment and no transfusions but IT is back now.

In July, I was bitten by a Chipmunk and the doctors insisted that I get the Rabies Vaccine and I was very concerned that those shots would 'poke the lion', and it appears that it did. I had several allergic reactions and ill from the rabies shots while getting them and then I bounced back to normal for a month. Then I became aware of those very insidious symptoms and called my doctor at Sunnybrook. Other conditions were ruled out, CBC's taken and my HG had dumped 35 pts in 2 weeks. They put me back on the VPA ( Valproic Acid) which is what had put me into remission the first time, 10 years ago, but my counts continue to drop.

I go back to see my doctor in a couple of weeks, unless they contact me to come in sooner after the results of this latest CBC. At this point I see a BMB in my near future.

Since this has started, I can't tell you how many times I have said, 'damn chipmunk '

Kind regards,
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Old Fri Oct 19, 2018, 12:28 PM
Owen M Owen M is offline
Join Date: Apr 2017
Location: High River, Alberta, Canada
Posts: 7
Hi Lynn

So sorry to hear about your setback. I was aware that Valproic Acid was given for treatment of Seizures and Migraine headache I had not heard of it being used in treatment of MDS. When I saw Sunnybrook I thought of Toronto and Lawrence Park where I grew up. I now reside just outside Calgary and was diagnosed with MDS in 2012 and started Vidaza in April 2017. Will start my 21 cycle in 2 weeks. Have had no transfusions and self inject Eprex once a week to help keep Hgl respectful. My CBC is now usually about the same as when I was diagnosed. Last Bone Marrow showed Basts at 3% down from 6%. Major symptoms are tiring easily with profuse sweating. Would appear you are young enough to consider BMC. I am well past that point but am in great shape compared to many who take part in this forum and am thankful for each day I get to fight this disease.. the best of luck to you and keep posting so I can follow your progress.

Last edited by Owen M : Fri Oct 19, 2018 at 01:41 PM.
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Old Mon Oct 22, 2018, 11:50 PM
Agility Junkie Agility Junkie is offline
Join Date: Oct 2018
Location: Ontario, Canada
Posts: 2
Fingers crossed

Hi Owen,

After receiving the results of my latest CBC's, Dr. Wells' office had me come into today to see him. He confirmed what I suspected, my Hbg IS climbing again from the VPA, not high but above a 100 !!! The plan is to continue with the VPA and weekly CBC's, if my counts go up then I don't see him for 3 months.

In the past we had to stop the VPA after 6 months because it sent my Hbg too high (160). Lets hope it continues to work.

I enjoyed a ride tonight on my horse, something I haven't been able to do lately.

I hope you are well Owen.

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