MDS and severe joint swelling

[Donna Dow]

Hi, I writing on behalf of my mother. She had CLL in 2009, treated with chemo. Start of year found out she now has therapy related MDS with 2 chromosome deletion 5 & 7. She’s due to have haploidentical SCTin Oct. Since April she’s had various stints in hospital for bad headaches, pnenomia,then had gall bladder out after 4 days of severe pain. Initial August SCT was postponed due to a suspected fungal infection in lungs. Had a bronoscopy on 31/8 and since then she’s been quite unwell. Started with a flu, then sinus, sore throat and lost voice. Then she had leg pain and an eye infection started. Ended up in hospital with eye infection, couldn’t see and pain from door couldn’t walk for a few days. Eyes improved but both feet then swelled and 4 fingers which were very painful. They started on steroids last Saturday and started to get better but since Thursday her feet are less swollen but still sore but ahe has pain everywhere. Legs, groin, nose and can hardly move arm. She can barely walk and is very lethargic as not eating and in lots of pain. Doctors are going to review her pain meds. They will also do a bone marrow biopsy this week.
She’s on about 2-3 units of blood transfusions but her bloods have been dropping to 71 and not staying around the 100. Usually they’d drop to the 80s.
I worried about a few things:
Why is she in all this pain. Is it normal or a bad sign. Is it polyarthritis or something more sinister.
Is this a sign of progression to AML
Should the doctors be starting her on something now e.g. vidaza etc
Anyone experience these type of symptoms?

[mdsfound]

Dear Donna, Thank you for your email with information regarding your mother’s health. I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. She 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 also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.

[Donna Dow]

Thank you. Unfortunately she is too unwell to travel at the moment. My sister in law has mentioned an International Consultation. Not sure how it all works but she’s finding out. Getting desperate I guess to try and help her.

[mdsfound]

Hi Donna, Since your mother is not ambulatory, I would recommend that her physician consult doctor to doctor on her behalf. It will be easier for your mother and her doctor will have all of her records that he can share during his consult. I would show her doctor our list of centers of excellence. The world of hematology is very small so it is likely that he or she may know one of our experts.

[Donna Dow]

I lost my beautiful mum on 8th October. Everything just went down hill so quickly. Severe Joint and pain bone pain; not eating; headaches and confusion and returned eye infection. In those last few days she could hardly talk, last two days just saying things but couldn’t understand. Couldn’t walk and not eating or drinking. Was just so sad and heartbreaking. Felt we were robbed of time with her as noone knew this would happen. We didn’t even make it to transplant. Stil can’t believe it and heartbroken.

[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.

[Donna Dow]

I hope everything goes well with your husband.

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