[David Spicer]

Thanks Michell! Reading that was a great way to start my day. I’ll show it to my husband, who is due to resume Vidaza shortly.

[David Spicer]

The forum Owen mentioned is at forums.marrowforums.org and it has sections for various diseases.

[David Spicer]

Donna, I’m sorry you lost your mom… it seems like no one in this situation knows how much time we have left. My husband wasn’t expected to survive the hospitalization he just got home from. I thanked the staff for buying us some time, knowing that was all they could do.

[David Spicer]

Sharon, I’m so sorry for your loss…

[David Spicer]

Jeanne, thank you for posting. As my husband and I experience a series of “new normals” with his MDS, some of the numbers get pretty scary. His hemoglobin has been in the 6s a couple of times and we were pretty worried, so I found some relief in seeing that someone survived a 3.8 – not that I would wish any of this on anyone. We’ve seen platelet counts of 4 and neutrophils of 0.0 ourselves. So levels that we used to find frightening are now cause for relief, when platelets hit double digits or neutrophils get all the way up to 0.2 – it seems surreal at times.

[David Spicer]

My husband experienced pronounced shortness of breath once after receiving two large units of red cells. The folks at the ER concluded it was fluid overload, and the transfusions he’s had since are done very slowly. That helped.

[David Spicer]

Thanks for the reply. When we went in for today’s labs, the nurse made an inquiry for us. The center uses a five-day course for Vidaza and was closed for Labor Day (US), so the second round started Tuesday, Sep 5 and the fifth day would have come after a two-day interruption. They decided having the full rebound period was more important than getting the fifth day’s injections.

[David Spicer]

Many thanks for posting that, rar, and thanks to Jennifer for starting the thread.

My husband, recently dx’d with MDS, may be facing the prospect of a transplant as well. He’s 67 but has the complication of being a 25-year HIV survivor. We live in NC and will be having a consultation at Duke in several days to see what they can offer.

The combination of these two conditions has some pretty scary numbers in terms of survival, but as you’ve happily reminded us there is cause for hope even in the face of complications and long odds. Best wishes going forward!

[David Spicer]

Hi Shannon –

I’m the caregiver of an MDS patient – my husband Alan is a long-term (25-years) HIV survivor who was just diagnosed with MDS in May. We were given the “Building Blocks Of Hope” booklets, available on this website, which were a godsend. The dx was from the first set of bone marrow biopsy results – the number and appearance of various cells in the marrow and surrounding fluid. The second set, involving the number and type of genetic abnormalities, took a couple of weeks more to come back. Those have a large influence on expected outcome.

Looks like there is a wide range of conditions, causes, and expected outcomes under the umbrella known as MDS. While there isn’t a lot of activity on this message board, the wealth of older messages contains a lot of information and experience… and we never know when someone new will show up 🙂

With best wishes – Dave

• This reply was modified 6 years, 10 months ago by David Spicer.

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