My husband newly diagnosed with MDS-RS

[Karen]

My husband is 73 years old, he used to be very active, then he started sleeping all the time and getting out of breath easily. Of course his red blood count and hemoglobin were low. He has been given 1 injections of Aranesp every 2 weeks. The only thing it seems to be doing is making his BP bounce around. He’s gotten 2 injections so far. The doctor hasn’t given any prognosis except to say it’s intermediate, I don’t want to ask in front of my husband. Any advice would be so appreciated, he also gets dizzy.

[Marie Yeager]

Hi Karen,
I am so sorry you are dealing with this. It is a confusing disease with so many variants, so no two patients follow the same path. My husband is also 73 and was diagnosed 4 years ago. He is going to Johns Hopkins and sees an MDS Specialist there. She has an enormous respect for “MDS wives” – says there are no better advocates! A few things to help you and your husband….

Aranesp takes a while to see results… like 2 months! So try to be patient. And it doesn’t always work for all patients. Aranesp can also make your heart rate erratic or slow, so something else to be aware of.

Information is power. Has he had a bone marrow biopsy, and if so, what mutations/karotype did it show? This is VERY important as it dictates everything else.

Track his blood numbers.

If you are not going to a Center of Excellence for MDS, find the closest one and make an appointment! I cannot stress this strongly enough. There are so many changes and new approaches that local docs simply don’t know about. We went local for a while and switched and it was the best thing we could have done.

Don’t be afraid to ask questions. This is VITAL. Your husband is going to need you to speak up now more than ever and be his advocate. I’m sure he is frightened and probably a little fuzzy if his numbers are low. It will be really difficult for him to remember all of the questions that need to be asked, and equally difficult to remember the answers. Start keeping a journal and write everything down. Make a list of questions with your husband and take it with you to the next appointment (along with a pen so you can write down the answers). It can be quite overwhelming for both of you!

There is also a facebook page for MDS patients and caregivers if you are on FB.

Lastly, try to take care of yourself! Reaching out to others is a great way to maintain your sanity and get support from others who have been in your shoes.

Sending a big hug. I hope he gets some relief from the Aranesp soon.

Marie

[Janet]

Karen:

Marie has given you some great advice. In addition I would like to add that you should use the tools available here on MDS-foundation.org. you can learn what the Ring Siderblasts means. You can also use the IPSS-M calculator to calculate your husband’s risk score.

Intermediate risk means your husband is more likely to develop Acute Myeloid Leukemia. It also means he has a shorter life expectancy.

Did he have a Bone Marrow Biopsy? If so did it discuss Myeloblasts?

Check the listing for MDS Centers of excellence on this site to see if your provider is one of the sites. Your provider should be talking to you about a stem cell transplant, which is the only avenue for a potential cure. Be an advocate for your husband and ask questions.

When I was newly diagnosed, I was somewhat shell shocked. It is a lot to take in. All MDS patients are on palliative care. We live with MDS for the rest of our life, unless we are cured by a stem cell transplant.

[Karen]

Thank you so much for responding!! My husband has had a bone marrow biopsy which showed a SF3B1 mutation and an abnormal karyotype of trisomy 8. I haven’t asked the doctor a lot of questions because I’m pretty sure my husband doesn’t want to know, that’s just how he is. I use to be a nurse so I’m aware that this could be serious, but for how long and how quickly it progresses, well the doctor did say the injections would slow it down, of course as I know only you would understand my heart is breaking.

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