New to MDS, any answers/stories greatly appreciated

[Matthew Roling Roling]

Hi All,
My name is Matt and I am a 20 year old. All the stories and advice any one can share would be greatly appreciated. Just under a week ago, my now 70 year old grandma was diagnosed with low stages of mds. She has been involved in every step of my young life and I can’t imagine losing her. The doctors caught her mds from a bone marrow test and gave her around 5 years to live. She hasn’t had any other medical problems besides a bum knee and arthritis. My question is simple and I’m just reaching out to anyone on here that can provide any advice on how to help her coup, her life expectancy, possible treatments and new clinical trials. She is a fighter and has been all my life. I just feel horrible for my cousins who are 7 and younger which will potentially never get to experience the love/amazing person she is/gave. Please, if you could take the time to just provide me with your stories, that would be greatly appreciated. I want to have an idea of the journey ahead/most of all how much time I truly have with her.

[Kevin Dugan]

The 5yr estimate is just a guess. It is slow moving mds so there is no certainty as to how it might progress. I have had same for 3 years with some transfusions and infusions. I am batter than ever. New biologics are changing our chances. So know that she will need to rest frequently when hgb drops and will need help around the house. Walk sleep and eat good.

[Michael]

Matt~

I am 70 and was diagnosed with low grade MDS 6 years ago. It was a shock and difficult to understand. Like your grandma I was told the 5 year expectancy. I’ve been treatment free and on watch and wait since diagnosis. I have monthly blood draws and an annual bone marrow biopsy and my disease has not progressed much. I’ve had to make some adjustments lifestyle wise but otherwise I’m doing well.

While this disease is different for everyone, my point is don’t despair. I have 8 grandkids and they all understand grandpa has a disease and I enjoy doing things with each of them. Next month I’m taking four grandsons for a week at the ocean.

Best wishes.

[Jack Allen]

Matt,
There are many versions of MDS and it will depend on which one he has and whether reds, whites or platelets are affected, or all of the above. Low grade is most likely only red cells.
I have ringed sideoblasts with only reds affected. They told me to get my affairs in order, then 3 months later suggested 5 years. That was 20 years ago.
When blood counts drop you start the get other ogran problems so my advice is,
1. get as much blood as possible.
2. get on an oral iron chelator (e.g generic version of exjade. I like the one made by sandoz the best)
3. Personal preference to try various drugs offered. None of them work for very long for most people, but some have had good success with red cell stimulants like exprex, procrit.etc. and more chemo like drugs like vidaza revlimid, and luspatercept. I got about 18 months transfusion free on revlimid (oral pills) but it seemed to kill my thyroid).
To summarize, itf there is little else wrong and only red affected, transfusions can carry you a long time.
Good luck

[Paula Voell]

Dear Matt,
How lucky your grandmother is to have such a caring grandson. And there are a lot of ways you can share your love during this time. No medical advice, just a few things I’ve learned over the past year of being an MDS patient.
If she requires transfusions, perhaps you can donate blood as a “directed” donation. Try to be with her during doctor’s visits. It’s all new and confusing. For a transfusion day, take a warm fleece (it can be air conditioned and chilly;) request a warmed blanket; pack a lunch or some comfort food. Bring some distractions for the time in the chair, a book, magazines, her tablet.
Encourage her to drink water everyday, but especially the day before transfusions; it plumps up the veins to make the stick easier. Expect her to be fatigued and try to get her to rest…that’s her way of fighting now.
Contact local agencies and resources. You never know where you’ll learn something new or find the help you need.
Medication is expensive, but there are foundations, etc. that can help. Ask your doctor about assistance.
I hope you and she can find the equilibrium you’ll need. It can be a roller-coaster ride. Obviously you are resourceful, being on the MDS site so quickly.
Paula Voell, a 79-year-old grandmother

[Owen Maguire]

Hi Matt
Like you have been hearing everyone seems to be different with this disease. Here is some good news. I am 83 and was diagnosed trilineage ( Hem, WBC and Platelets) in 2012. On watch and wait until 2015 when went on Epotin ALPHA (Eprex) to stabilize low Hem in 2015. In 2017 was put on Vidaza 7 days on 145 ML dosage needles in stomach and then 21 days off before repeat. Have just finished 70th cycle. Recently diagnosed with Aortic Stenosis, plugged Aeortic valve and recommended for replacement valve. Heart Surgeon contacted my Oncologist to determine my life expectancy and she did data and now says 5 1/2 years. No sense putting in new valve for someone who will die in a year or 2. I am now going through a series of tests to determine my suitability for (TAVR) Aortic Valve replacement and everything has been positive so far.

Your grandmother is now low risk , so support her to your fullest and do everything to keep her spirits up. Most important start doing information gathering as much as possible on MDS beginning with this Web Site so that you are keeping abreast of the latest research and treatment that is going on. Finally if your grandmother is near one of the centre’s of excellence consider getting a referral for a second opinion.

My Hopes and Prayers go out to you and your Grandmother

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