[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

[Marie Yeager]

There should be two other results that indicate shape and size of the red blood cells: MCV and MCH. Mean Corpuscular Volume and Mean Corpus Hgb. Are those values normal? As always… get a second opinion from a Center of Excellence for MDS! Her hemoglobin looks great – that’s a big deal.

[Marie Yeager]

Hello Tammy,
I am also the spouse of a low risk MDS patient – we found out 4 years ago. The single most important thing you can do is find an MDS Center of Excellence and a doctor who specializes in MDS. They are MUCH more knowledgeable about all of the many types of MDS and latest research/treatments. Local docs rely on old an often outdated information.

There are so many things to learn… most importantly: what is his karyotype and does he have any additional mutations (this will come from his upcoming bone marrow biopsy. Karyotypes vary widely when it comes to prognosis. Some are quite aggressive, while others are very slow and quite manageable. Hemoglobin levels are what really affect a person’s energy. Do you know his hemoglobin number?

Your husband is young and would probably be a good candidate for a stem cell transplant down the road, but I doubt any doctor will recommend that drastic step for him at this point. Transplants are high risk. If he can feel better with some other treatments, better to try those first.

It can be so scary and overwhelming at times. The best thing you can do for both of you and your mental health is find that specialist- someone you know you feel confident has the latest research. We waited 3 years to make that move and we regret it. Not because the treatment would have been any different, but because our local doc was feeding us old info that terrified us. We could have saved ourselves 3 years of depression and anxiety.

Get as much information as you can on your husband’s karyotype and make a list of questions for the new doc. Your husband is lucky to have a caring spouse who can stay on top of everything! There are also some good Facebook groups that are active and good resources. I’m sorry you and your husband are going through this. Sending a big hug from one MDS wife to another.

[Marie Yeager]

Hi Carrie,
Some versions of MDS are not nearly as aggressive as others. Do you know your karyotype and any other mutations? How is your hemoglobin? My husband has had low risk MDS for 4 years and is currently not receiving treatment because he is stable. It is honestly all about which karyotype you have… some are quite aggressive while others can remain stable for many years. One major suggestion I will make to you – go to a center of excellence. Local hematologists are not nearly as dialed in to the best treatments as they are at the major hospitals. we regret not going immediately to Johns Hopkins which is an hour away from us. Could have save ourselves a lot of sleepless nights and heartache. We transferred his care there 6 months ago and it has been a Godsend for both of our mental health. There are some great groups on Facebook that are very active as well.
Sending you a virtual hug,
Marie

[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, 9 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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