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Father with MDS

This topic has 4 replies, 4 voices, and was last updated 5 years, 11 months ago by Wendy Brizer-Maciol.

Viewing 5 posts - 1 through 5 (of 5 total)

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May 31, 2018 at 10:16 am #36565

K Cheesman
Participant

Hello. My Father, who is 85 yrs old, was diagnosed with MDS 4 months ago. All blood cell types have been impacted, his WBC are counted in the range of zero to 1 (and have been at this level since the diagnosis), his platelet count is counted less than 13 (again, at this level since the diagnosis) and his RBC (hemoglobin) is usually in the range of 7-8. This RBC count is only maintained with regular transfusions. Since the end of January 2018, he has received 8 transfusions and we find they are only lasting (or giving him relief) for about 7-9 days and then the labored breathing, shortness of breath & lack of energy/strength return & he needs another transfusion. We are not pursuing a treatment course (chemo or bone marrow transplant) due to his advanced age & not being able to withstand the treatment. He has also been diagnosed with congestive heart failure, due to the anemia, and is being monitored for this as well. We have seen a steady decline in his condition since his diagnosis. His doctor indicated people with his type of MDS, the expectancy is measured in months. My siblings & I are trying to wrap our minds around what might be to come & about how much longer he may have. Another question we have is, while his transfusions are providing relief for 7-9 days now, is there a likelihood this could/will reduce to something less (say like only lasting 3 days, for example). Any insights anyone may be able to provide would be appreciated. Thanks in advance.

May 31, 2018 at 10:55 am #36566
mdsfound
Moderator
Thank you for your post with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We are also happy to arrange the appointment on your father’s behalf. If this is something that you would like us to do, please email patientliaison@mds-foundation.org.
I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.
- This reply was modified 5 years, 11 months ago by mdsfound.
June 1, 2018 at 9:23 pm #36582

Wendy Brizer-Maciol
Participant

I lost my 92 year old father to mds last week and could provide a wealth of valuable guidance. Please reach out to me if you are intetested.

June 2, 2018 at 2:48 pm #36583

Donna
Participant

Wendy……I extend my sympathy to you regarding the loss of your Dad. May he RIP. Donna

June 2, 2018 at 7:24 pm #36586

Wendy Brizer-Maciol
Participant

Thank you
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