[Marie Yeager]

Good Morning Rok,
I completely understand what you and your Dad are feeling right now. We had a very similar experience 3 years ago with my husband. Doctor called on Christmas Eve to tell us he very likely had MDS, but offered no additional information except to say he would be scheduled for a bone marrow biopsy. We spent the next 3 weeks reading about MDS and being in an absolute panic, thinking he only had a year or two to live. It still makes me furious that the doctor was so completely insensitive. My husband is also Low Risk and anemic. There is a wide range of MDS karyotypes – some are deadly and some are quite manageable with much longer life expectancies. When we went to the Center of Excellence, the doctor told us his heart stent was a bigger concern than his MDS.

The fact that he knows he is Low Risk MDS is good news. In the MDS world, that is very good news. His local family doc will likely not know a lot about this disease as it is an ever evolving area with lots of new information in recent years. “Low Risk” means he is at low risk of progressing to Acute Myeloid Leukemia (AML). It is very important to understand which mutations are present in his marrow and only a trained hematologist who specializes in MDS can fully understand the implications of each mutation. (Some are not nearly as concerning as others). If you can get a consult at a Center of Excellence, they can at least set a course for his treatment that is most effective for his mutations. These treatments can then be administered locally. He can then go back for check ins from time to time. He will likely start receiving Aranesp injections every 3 weeks to boost his Hemoglobin levels.

One thing I would strongly suggest – your Dad will need an advocate to go with him to appointments and advocate on his behalf. This is a very complex and physically challenging disease. It is tough to wrap your head around all of the information and think about all of the right questions to ask when you are anemic and not feeling your best.

Questions to ask:
What mutations are present in his bone marrow? (What are his karyotypes)
What does each mutation mean as far as affecting his longterm outcome?
How low is his Hemoglobin level?
Can he be referred to a Center of Excellence for a consultation? (if a referral is needed. If not, just call and ask for an appointment).
What is the least aggressive treatment plan that can boost his hemoglobin and get him feeling better?
Is there anything you can start doing immediately to help boost his Hgb? (i.e taking B12 vitamins)

Once you have all of that information, you will be able to get a lot more feedback!
Hopefully your Dad can start feeling a bit better and get some energy back soon.
I hope this helps. The MDS community is a very supportive one.
Hugs to you and your family,
Marie

[Marie Yeager]

Hey Joe,
I hope you are seeing improvements! They started my husband on 500mg to start, so it seems your doc is taking a conservative approach to see how your body responds. You don’t want to ramp up to top unless you really need it. How often do you get your injections? My husband started out every three weeks and is now getting them every two weeks (for about the last 9 months). His hemoglobin was surprisingly high this last time, so thinking they might move him back to every 3 weeks. You should start seeing improvements over the coming weeks. (In energy too!)
Hope you are doing well,
Marie

[Marie Yeager]

Hi Joe,
My husband is also low-risk and started Aranesp 18 months ago. It took a good 4-6 months for it to really begin to work. We were very anxious looking for an immediate response with every blood test, but they warned us that it would take a while to start feeling better… and the doctor was right. Give it more time. It is very difficult to be patient when you aren’t feeling well, but it did eventually pay off! Hang in there!
Marie

[Marie Yeager]

Hello James,
Sorry to hear you are feeling so fatigued. My husband has low risk MDS and I can always tell when his hemaglobin drops – the fatigue hits like a hammer. If yours was at 6, it’s no wonder you felt so awful! He has not received these drugs, so I can’t provide any first hand perspective to your question. But some of the best information we’ve found on treatments has been from watching some of the webinars provided by the MDS Foundation. You can watch prior webinars here: https://www.mds-foundation.org/on-demand-previous-webinars/ If you have the opportunity to join one of these webinars when they are live, they will answer specific treatment questions at the end. Wishing you all the best!
Marie

[Marie Yeager]

Thank you Lisa.

[Marie Yeager]

I just saw this 2 days ago. My husband has Lower Risk MDS that is progressing, so we’ve been following. On track to be FDA approved in 2024 I think.Hoping this is discussed on the upcoming webinar in February. https://www.onclive.com/view/imetelstat-provides-durable-transfusion-independence-in-lower-risk-mds

• This reply was modified 1 year, 3 months ago by Marie Yeager.

[Marie Yeager]

Hello Crystal,
My heart aches for you. It is never easy being with a loved one towards the end. I’ve been with several parents (mine and my husband’s) when they were at that point. Sometimes they’ll have several bad days and you think it’s the end … then all of a sudden they bounce back and have a few good days. Every one was different, but none of them had MDS. I also had a niece pass from leukemia and she became very similar to what you are describing toward the end – the most important thing to focus on is comfort. Don’t hesitate to use any and all measures that hospice has to offer. In those moments when he’s still aware and conscious, Share your favorite memories and stories – even if you aren’t sure if he can hear you. Your presence will bring him great comfort and peace. He clearly raised a loving and caring daughter. Thinking of you and your dad and sending good thoughts your way.
Marie

[Marie Yeager]

Hello Crystal,
My heart aches for you. It is never easy being with a loved one towards the end. I’ve been with several parents (mine and my husband’s) when they were at that point. Sometimes they’ll have several bad days and you think it’s the end … then all of a sudden they bounce back and have a few good days. Every one was different, but none of them had MDS. I also had a niece pass from leukemia and she became very similar to what you are describing toward the end – the most important thing to focus on is comfort. Don’t hesitate to use any and all measures that hospice has to offer. In those moments when he’s still aware and conscious, Share your favorite memories and stories – even if you aren’t sure if he can hear you. Your presence will bring him great comfort and peace. He clearly raised a loving and caring daughter. Thinking of you and your dad and sending good thoughts your way.
Marie

[Marie Yeager]

Thank you so much for taking the time to share your experience with me Bill. I’m so sorry you are going through this. My heart goes out to anyone dealing with this disease – certainly changes your life perspective, right? So grateful for this community! I hope your BMBs continue to be tolerable and hopefully bring you better news. It sounds like my husband’s experience was perhaps not the norm, but no way to know until they do it whether or not there is a nerve at that location. The thought of someone drilling into bone still makes my head spin. Thank you again for sharing,Marie

[Marie Yeager]

Thank you so much for the feedback Michael. Your perspective is very helpful – greatly appreciate that you took the time to share your own experiences. I hate the thought of anyone having to get so many BMBs and wish you well for your December 7th visit. Hoping it is painless and brings good news for you! Best wishes, Marie

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