Myelodysplastic Syndrome (MDS)

My husband was diagnosed with low risk MDS February of 2024. His diagnosis is a result of previous chemo in 2016 for base of tongue cancer. He has 7q deletion. Are there any others out there that have MDS as a result of previous treatment, and if so, what has been your journey to date. Thank you.

Diagnosed in august 2014, MDS, no known reason for this horrible disease. Am on Aransep every other week, in oncologist office 25 miles away. Lab blood draw every other week to track hemaglobin 10 plus.
No taxis in this area so have to beg transportation.
Family on east coast and do not like to be around sick people! Husband died 2006 of agent orange cancer two hours away San Antonio, tx. Good luck Blessings to you both.

Welcome to Connect @stevepark1955 I’m sorry to hear that your husband has another cancer issue. Cancer can be such a bear to overcome and unfortunately some of our meds aren’t discriminatory in what becomes collateral damage.
The positive news is his MDS is classified as low risk.

I see you posted in another MDS discussion here in the forum. There is a member in that conversation a little further back in posts who does have secondary MDS. There may be others as well but for now hopefully @jdaltonireland will be able to share their experience with you in this comment
https://connect.mayoclinic.org/comment/999026/

Is your husband receiving any treatment for this now?

Thank you so much for responding. He is not taking anything at this moment. He is in a watch and wait period which we find very difficult to wrap our heads around. He has blood draw every three months as he has done for 8 years due to radiation killing his thyroid. We will continue to do every three months. Othe than lab results he is totally asymptomatic at this time. We do meet with a transplant team this month at mayo in Jacksonville so very have a ducks in a row should his risk level change.

A watch and wait period can be a little confusing. It feels like you’re waiting for the other shoe to drop. But it simply means that your husband is in a window of watchful waiting or active surveillance right now because of some abnormalities showing up in his blood work. His doctors are be cautious by following his condition but not rushing into any treatment that isn’t necessary.

Having blood work every three months is a good indicator that things are pretty stable right now. His doctors aren’t anticipating any acute changes or they’d have him do labs more frequently. In my personal experience with leukemia, 3 months is a long leash! 😉

If his MDS does progress to requiring a stem cell transplant, his doctors will have discovered the changes early enough so that he would go into transplant much healthier in the early stages of the disease. From my perspective as a stem cell transplant survivor of 5 years, meeting with a transplant team ahead of time is really a great idea. If you have any questions at all about the process, please don’t hesitate to ask. There are a number of members here, including myself who have had bone marrow transplants for AML or MDS and other conditions. So we’re here to help out whenever we can.
Having a SCT usually requires being near (within 30 miles) of the clinic for 100 days or so. Do you live near Jacksonville?

Thank you again for all your words of wisdom. You seem to be a voice of reason, something I know I am grateful for. Although we have been through cancer before, this is much different.
Our original oncologist is in Palm Beach County Florida where we previously resided. Mayo was a second opinion for us. We are 2 1/2 hours south of Jacksonville in Brevard County. Our PB County oncologists sends his patients that need SCT to either Dana Farber (that is where he was for years), Sloan Kettering in NY, or a place in Texas (not MD Anderson). And although i think those are all excellent choices, we are at this moment leaning towards Mayo should the day come since our children are also local and I feel it's important to be close by with family when and if that time comes.
I can't thank you enough for the open invitation to ask anything that might help us navigate.
Is there anything right off the bat from your experience and knowledge that you think we should be doing at this time or asking?

My MDS is a result of surgery for a growth on my colon. The day before surgery my hemoglobin
was 13, seven days later it was 11.7, that was a year and a half ago. I am now diagnosed with
MDS, hemoglobin going down to 6, transfusions, headaches and just started chemo this week.
too old for bone marrow transplant (86)

I’m very happy to be able to be your voice of reason if needed. None of us ever know how we’ll react to a life altering diagnosis until we’re faced with it. I’ve had a great deal of experience the past 5 years with very aggressive acute myeloid leukemia and the subsequent need for a bone marrow transplant. I didn’t have a mentor or anyone who I knew who had gone through this. My teams were wonderfully helpful; they could talk the talk but they hadn’t walked the walk. It really helps if someone who has gone through a similar experience does a little hand holding or shines a light to guide the way through this intimidating medical journey. I feel it’s my privilege to be able to offer hope and help out where I can. Not much ruffles my feathers and I will be here to help you and your husband whenever I can. ☺️

Your idea of being close to family, should your husband need a transplant, feels like a sound plan. While the other clinics are all good choices, Mayo is a top tier transplant clinic and having family nearby would really benefit both you and your husband.
Right now I can’t think of anything that you should be asking. It sounds like your husband’s doctor is keeping an eye on his condition and it’s stable at this point.

When you talk to the transplant team, you ask how the transplant is handled…whether it’s as an outpatient; where your husband is off campus but nearby for 100 days. Or, if he will be in clinic for a few weeks and then require lodging. Each clinic will have their own protocol.

My experience at Mayo Rochester was as an outpatient, which I loved!! I felt that I recovered faster than if I had to stay in a hospital setting. My husband and I did relocate to Rochester for 4 months which worked out really well for both of us.

But your husband isn’t there yet…so this may be years down the road. It’s great to get ‘ducks in row’ with all the information but don’t forget to just live in the moment and enjoy life right now!
Another suggestion is to not do a lot of research into the transplant process online. It can take you down paths on the internet with stories or situations that won’t apply to your husband and just create unnecessary anxiety. This is all doable, not a walk on the beach but it is a second chance at life and well worth the effort. ☺️

Thank you, thank you thank you! You are an angel for sure.
I have always found cancer of any kind to be a very lonely and isolating journey if you don't have people who have walked this path before you to share and guide. An although we have done this before, and I feel as if I have a fairly good grasp on cancer- this watch and wait type is a very different experience for us.
Eight years ago, we knew the path from day one- with MDS i feel like we are flying by the seat of our pants in some respect.
Again, thank you for being that individual that everyone needs.

It is isolating. Only one of my church members has come by in 10 years. What??? Cancer must be contagious 😷 or is it because of the Covid we are allowing control our thinking now?
I don’t drive much anymore because one or more of the 20 meds I’ve been assigned by one of the 8 doctors I have to see now makes me dizzy. NO taxis or med rides in this area.
All contributes to more isolation! Nope, doctors don’t talk confer with each other as they are in different towns practices hospitals.