[Sue]

My husband always takes Zofran and a Senna tablet before each treatment and he has never had a bout of nausea, nor has he had any significant constipation.

[Sue]

So happy for you both Rose! Was very surprised and pleased that he is leaving at Day +14; is that because he had a low intensity chemo – or just because he is a star patient? 🙂 We met with our transplant team this week and my husband is ‘on the launch pad’ (as his doc put it) for a transplant very soon, with an anticipated hospital stay of 4-6 weeks. Because we are 2 hours away from the center we will need to stay in Buffalo (Roswell Cancer Center) for another 1-2 months after discharge. Initially the transplant doc didn’t seem to be in much of a hurry to move until he reviewed his most recent biopsy which indicates he has acquired an abnormal monosomy 7, and has 3% circulating blasts. And so the journey begins. My best to you and your husband – sending prayers and good thoughts your way.

[Sue]

Rose – the timing on your diary is incredible. We are meeting with my husband’s transplant team next week. He had had such a great response to Vidaza when he started it in 2017 that I was certain it would last longer than the standard 2 years. Well almost exactly 2 years now and it has stopped working and his doc wants him to go to transplant ‘expeditiously’. So your diary is just a small peak into what we can expect. 4 years ago when he was first diagnosed he did not have a match on the registry, so unless something has changed, he will be going through a haploidentical transplant with stem cells from our son. The one thing I have learned from these boards – is that no two MDS cases or transplants are the same – but it is comforting to be in the company of others that have traveled the same road. We are cheering for you and your husband.

[Sue]

Mark – I’m not sure about the ear aches – but the light headedness could be due to low red counts.
Allan – my husband used to have ‘head issues’ as well. He never used to have headaches, but then he began having very low-grade headaches similar to yours. This went on for several months. He said that whenever he coughed or sneezed it felt ‘like his brain was dislodging from his head’ a little. And it would get worse when he bent over. It got so bad that one day he was bending over to pick something up, that he fell right on his head. That fall blew open a vessel in his brain (subdural hematoma) and he underwent surgery to repair it. The doc says there was evidence of old blood (likely contributing to his ongoing headaches) and new blood – from the fall. If you are experiencing anything similar to this and have low platelets I would bring this to your physician’s attention right away. It could be nothing – but had we been more vocal about it at the beginning he may not have needed a total of 3 surgeries to repair it (and the last was to resolve an infection from the first 2!)

[Sue]

My husband had several episodes of low platelets. Typically nothing is done about it until they get to 10 or below at which time a platelet transfusion is done. The transfusion itself takes about an hour or so. If a transfusion is considered, make sure to talk to the doctor about pre-medication, i.e. benedryl and steroid to lessen any adverse / allergic reactions. I have never heard of promatca, but did read this when looking it up: “Taking Promacta may increase your risk of developing blood cancers, especially if you have myelodysplastic syndrome (also called “preleukemia”). Talk with your doctor if you have concerns about this risk.” Hopefully your doctor is well-versed in treating MDS.

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