[ask4angels]

Hi! My husband is 69 and was diagnosed with MDS 2 1/2 years ago. 15 rounds of chemo. It’s affecting his platelets. All the other numbers seem to be holding steady. However he sees a pain management doctor for his pain. It’s an all over body pain… Muscles joints etc. his right hip is hurting him extremely bad. I bought him a cane to help. In the last few days we are noticing that his right foot is turning out. By the grace of God we have an appointment to see an orthopedic surgeon next Tuesday. I’m blessed that we got in at least so that Alan can get assessed. We’re hoping for a hip replacement. We were told that they can infuse him with platelets.

[ask4angels]

I would like to thank everyone for their feedback. Richard, I especially enjoyed the article that you wrote. It was very informative. While others may be able to wait with their MDS and see what happens, I unfortunately have the mutation that I will go into AML. I am having my third bone marrow biopsy on February 3rd. I am hoping that I do not have an increase in blasts. Richard, what are your thoughts on T cell removal to lessen graft versus host disease. Also, do older patients have a better outcome with the best match?

Sending positive thoughts and prayers to all…

[ask4angels]

Hi Donna! Alan has SRSF2 – SETBP1 – Tier 2 (Variance of unknown significance in myeloid malignancies).

• This reply was modified 4 years, 5 months ago by ask4angels.

[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, 5 months ago by ask4angels.

[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, 5 months ago by ask4angels.

[ask4angels]

No, it was based upon the bone marrow biopsy. There were three main factors that they look at. My score ended up being 3.5 which put me at intermediate: Also I have a 7Q deletion! This was done by a transplant doctor and not a hematologist oncologist.

• This reply was modified 4 years, 5 months ago by ask4angels.
• This reply was modified 4 years, 5 months ago by ask4angels.

[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, 5 months ago by ask4angels.

[Author]

Posts