Fevers, multiple transfusions

[Dale Reagan]

My husband is 71 & was diagnosed in March 2021. He started treatments 7 days at a time with Vidaza until it stopped working in February this year. We’ve never been told what stage he is in except that nothing else can be done for him except transfusions. He’s had 6 since April 1. The last one was on May 17. 2 units of blood and 1 unit of platelets. He spent 5 days in the hospital before that & they don’t know why he runs a fever. Basically his bone marrow isn’t producing anything & dr said it’s full of scar tissue & other stuff I didn’t understand. So I haven’t been told straight out that he’s dying but my gut feeling is that it’s only a matter of time. He hasn’t been himself much since the last transfusion and slept all day yesterday and today. Severe brain fog. I just needed to say something to people who might understand what’s going on because all the dr can say to me is “it’s not good” I’ve read comments here where people have lived years on transfusions but I don’t see it happening in my husbands case.

[Kathleen Till]

Can he not have a Stem Cell Transplant. I had one last Sep and I am 73.

[Dale Reagan]

No the doctor said since he had bladder cancer and only one kidney he wasn’t a candidate for transplant. The way they talked was at this point it’s too late because I asked if he could get one. Doctor specifically said there’s nothing else that can be done other than transfusions.

[Amy Clark]

Hi Dale,
I am glad your husband has you to care for him. It sounds like you are trying to do your best and that you love him very much. Yes, the situation doesn’t sound good, from what you described. From what I have read on this forum and in other articles, living on transfusions is a matter of weeks to months typically. That is once a medication has stopped working and the disease is progressing. Sleeping a lot from lack of energy and eventually not eating are the most common symptoms when one is dying from lack of red blood with MDS. Low platelets and low neutrophils are another type of progression, With Low platelets you may have eventual internal (or external) bleeding and with low neutrophils you may have infections.

You certainly need some support during this time. It would be better if you could talk with a nurse practitioner or physician assistant who is familiar with your husbands case (or at least MDS) if your doctor is not willing or able to give you more information. Of course every patient is different, but you could ask for the range of time they have seen someone in his situation live with transfusions. I will pray for both of you and hope you can both come to some peace with God if you don’t have that already. And for you to have the love and support you need.

[Jack Allen]

Hi Dale,
I am 72 and also have many co-morbidities.
Stage 4 liver problem due to long term iron overload, heart failure, severe calcification of coronary arteries,
and now lung problems such that my O2 saturation is so low I need home oxygen.
However, I was diagosed more than 20 years ago and have been transfusion dependent for 17 or 18 years. Luckily for me, my MDS affected red cells only. I have tried many different drugs over the years including Vidaza. It also worked for me for about a year.
Revlimid worked for almost 2 years and actually gave me transfusion independence for most of that time. I am currently on Luspatercept. It is supposed to be the perfect drug for me, specifically for ringed sideoblasts. It is having minor improvement on my reds, but it has actually improved my white cells and my platelets to everyone’s surprise.
I am currently close to 1.5 bags of blood every week.
Do not give up !!!
As long as you and your husband keep a positive attitude, blood products should not be his demise. I have probably had at least 500 bags of blood with only 2 minor reactions

[Author]

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