Looking for experiences with the progression of MDS

Hi Brenda,
IPSS-R are the initials for International Prognostic Scoring System - Revised. I know this is confusing but the IPSS-R was just recently revised again to include information about specific gene mutations. It is called the IPSS-M - International Prognostic Scoring System - Molecular. By the way, back when this all started for me thirteen years ago, the risk stratification system was just called the IPSS, and I never actually got an IPSS score myself because there was no scoring system for “presumptive” MDS. MDS is a progressive disease, and knowing your score would give you more information about your likely prognosis and the best treatment plan for you. When do you see your doctor again? I am very interested to hear what the outcome of that conversation will be!!
Anne-Marie

Anne-Marie,
Thank You for all the information.
I have an appointment in February 2024. I am looking forward to learning more and getting a better understanding!
I am 49 years old and live in Indiana, US.
I would like to think I have some control over my health, but I’m afraid it’s not possible??
Glad to have someone to talk to! Thanks Brenda 😊

Brenda, you had asked me three questions a "while" back:
1- Could you explain what your test showed?
--- The MDS diagnosis is: Multilineage dysplasia and ring sideroblasts. And my IPSS-R score is low intermediate.
2- How are you feeling now on a daily basis?
--- Essentially, i am immunocompromised , and anemic. Thus, always tired, and careful.
And at times, I become moody.
3- Have you had any major symptoms that disrupted your activities?
--- I have always been extremely involved and busy. A little more than a year ago, I was engaged in seven not-for-profits, did my share of the cooking, organised fairly complex trips for my wife and I as well as for our family of 15, read extensively, kept physically active, etc. As a result of the disease, I have resigned from 4 of the not-for-profits, do a lot less cooking, am unable to read as extensively, and have cut back from the travelling. In addition, I try to avoid any large indoor gatherings, and regularly take naps.
But I am able to get on with life. Mentally, it is a challenge, but it is better than the alternative. In addition, I am "preparing". I will soon be 77, and will be celebrating our 55th wedding aniversay in a couple of weeks.
I am also participating in a blood cancer monthly group discussion, and meet with a psychologist on a regular basis. It is not easy, and not always fun, but I feel privileged.

Anne-Marie, thank you for the information on MDS Centers of Excellence. I am fortunate since I am now being followed at the Ottawa Hospital. But one of my stresses is that my children are pushing me to get a second opinion, in one of the United Sates larger well known centers. What is your opinion on this?

Hi Brenda,
As someone else who posted here said “Be your own advocate.” Since you are only 49 years old, you would be eligible for a transplant as long as you don’t have any serious co-morbidities. The Mayo Clinic in Rochester, Minnesota is the best transplant hospital in the US, and it is not that far from you. I have no idea how much a transplant there would cost, but it would be worth it if it saved your life. But first you have to find out what kind of MDS you have and what your risk level is. The Aplastic Anemia and MDS International Foundation has great information. Their website address is mds-foundation.org.
Anne-Marie

Hi Jean-Pierre,
It never hurts to get another opinion, but it will cost you. I got an online second opinion from the Dana Farber Cancer Institute in Boston, and it cost over $3000 Canadian. I think it was worth it though because the hematologist recommended that Venetoclax be added to the Azacitidine my hematologist here in PEI was giving me. This will probably extend my life, but it is not a cure. The Dana Farber doctor also recommended a transplant which I am not going to do at the age of seventy. Some big transplant centres in the US transplant people even up to the age of 80, but I understood from your previous post that you don’t want a transplant.
Anne-Marie

Anne-Marie, Due to my age, it is strongly not recommended by the doctors who have spoken to me. This is due to the toxicity of the transplant operation, and the high risk, especially in light of my immune system.
This is even more so for an older person. I also did a bit of research on transplants for older people, and the survival rate is relatively low (and I certainly qualify for the age group 😊 ). Thus, I have decided to go for "quality of life", while waiting as to which treatments might be recommended when the blasts start multiplying, to try to extend my life.

Do you think that I am wrong?

No, I think you are absolutely right, Jean-Pierre. I am seven years younger than you are, and I have made the same decision as you have. The Boston doctor recommended a transplant for me, but both my hematologist here in Charlottetown, PEI and the transplant doctor in Halifax did not. I asked her how old was the oldest person she transplanted. She replied: “72 . She lived through the transplant, but now she has terrible chronic graft versus host disease.” It is my understanding that us older folk are more at risk for both cGVHD and relapse than younger people. I am also going for quality vs. quantity of life. My blasts were 24% when I was diagnosed with AML in September of last year. The Azacitidine alone brought them down to 10%. I don’t know what they are now because I haven’t had a BMB since I went on the Venetoclax. All I know is that for now anyway I look and feel fine. No matter what we do - transplant or not - there is always going to be uncertainty, and we just have to live with it.
Anne-Marie

Sounds like you have a very full life and enjoying it along the way. And congratulations on 55 years of marriage!!! That’s so inspiring,I hope to see our 55th year♥️
Thank you for sharing.
I need to put myself first and make some changes soon.
What do you like to cook.
I love being in my kitchen cooking from my heart!
Brenda 😊

Brenda, indeed I have (had) a very full life, and continue to be busy. But (there is always a "but"), times have changed. Due to the anemia and need to avoid large indoor gatherings, I have cut back on many activities, as well as my cooking has become more basic. I hate to simplify life under the expression that "attitude is essential". I notice that at times I can get down. Thus, there is consistently the need to fightback, and become more positive. I never really think of putting myself first. But I do focus on what I can do, and move ahead. Hopefully, you have some solid support. I am fortunate to have an extraordinary supportive beautiful wonderful spouse. 🙂 And our children still love us! In a way, if one is to get a cancer, MDS is a (yuck) a good one, since it allows you to live and prepare, essentially without much pain. At least so far... Hopefully your headaches will go away. But you are much younger. I am surprised that you have an appointment only in February, 2024. Hopefully, maybe once you have more information on your condition, things will move faster. I find that my biggest stress is not the disease. It is not knowing. Have to stop now since I need to go exercise. 🙂 Jean-Pierre