Father Diagnosed

[Kevin Benjamin]

My dad was recently diagnosed with MDS, however the doctor hasn’t ordered any testing and just wants to check blood annually. Any idea how and why they would diagnose without proof? Also, why would they not start treatment when it was caught so early? Labs suggest this was first detectable in 2016. Platelets in the 90’s.

[Kathy Stermer]

Kevin, believe the only way to diagnose is by bone marrow biopsy test. There are so many variations and stages of disease you are best served at a Center of Excellence where there is collaboration with others familiar in treating. Sometimes it’s just a wait and watch stage and others warrant treatment but an expert in this disease would be my recommendation. Wishing you and your father best of luck

[ask4angels]

I agree with Kathy! My husband was diagnosed with MDS because his platelets are low. The only way to confirm it is with a bone marrow biopsy. Do NOT let them do a biopsy without sedation. My husband just had his second biopsy done so they can check for mutations. This is an important step to find out the specifics of ones condition. We find out on Monday what my husbands mutations are and I guess what course of action they’re going to recommend. Prayers

• This reply was modified 4 years, 11 months ago by ask4angels.

[Kevin Benjamin]

Ask4angels can I ask was his initial diagnosis recent? As in did they do the test on their own or did you have to request it be done. Seems for us they want to wait until things get worse to do anything.

[ask4angels]

Hi my husband started having bruising and then a blood test revealed low platelets (80’s then 64) right before memorial weekend. He saw a hematologist oncologist and was sent for a bone marrow biopsy. (We said we would NOT wait) It was not normal for him to have any problems with his platelets. On July 22, 2019 we received the news that he was diagnosed with MDS. He just had a second biopsy to find out what is mutations are. We find out Monday what we’re dealing with and I will share in a post. We are so new to this… And it sure takes you by surprise.

• This reply was modified 4 years, 11 months ago by ask4angels.

[PATRICK CAMMARANO]

Kevin : If your going to have a BMB done send samples to two labs and have a fish test all done at the same time with the one sample. Ask the doctor when samples will be leavening his office and how will sample be handled. He won’t like that. Don’t do samples on a Friday evening. When you get the reports back get copies.
Report should be 4 or 5 pages with pictures of slides and arrows pointing to findings. Remember the pathoglist
job is to pick out of the sample everything that doesn’t belong in a normal bone marrow. In that report you will be given a number of blast that will give your doctor how he will start some type of treatment if any.

[Kevin Benjamin]

Thank you all for your helpful advice!

[ask4angels]

Patrick, I didn’t know any of this when my husband had his two bone marrow biopsy‘s. What is a fish test? My husband’s first biopsy was to diagnose his MDS the second one was to identify mutations. He’s gone from intermediate to high-risk. Recommendation is a transplant sooner than later because he has the mutation that will lead to leukemia. Thoughts?

• This reply was modified 4 years, 11 months ago by ask4angels.

[PATRICK CAMMARANO]

Angels: A fish test is a chromosome test to see if their are any abnormalities in your chromosomes. That might be the same as mutations test. Can you tell me what mutation will lead to leukemia? I just pulled out my last BMB which was date 2012. The report including the fish test was eleven pages. Angels: I’m not sure if I can get across MDS is your bone marrow is failing for many reasons. Reasons which is not important to you. That is not going away. 70% of us will not come down leukemia. We will sarcoma to bone marrow failure. If you come down with leukemia you still have bone marrow failure. Doctors will treat the leukemia because they can”t treat the the bone marrow. Chemo is not good for bone marrow? A transplant might be the answer?

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