MDS: How to improve my condition in watch & wait?

Mine sounds like yours. “Wait and watch” I now understand that insurance won’t approve treatments until
RBC goes below 9. When mine did, they started injections to spur the bone marrow. That has worked and I’ve gone from 7.2 to 10.2 over 3 months time. Dr says will continue “as long as they work”…
(I’m about your age and very active…and it was killing me to be so weak. Unfortunately I didn’t learn any tricks to circumvent the insurance protocol. )

Yep... I'm in there with both of you. MDS and MF. There are a couple of injections that will help the Kidneys stimulate the Bone Marrow to produce more cells, some of them will be "Good" cells and some won't. The Spleen will take up some of the production and keep things going, but at the cost of enlarging itself, which over time will have it's own issues. For the time being it sounds like you are in a wait and see situation. I spent many years in that spot, and with the aid of things like Procrit, and then Aranesp and Reblozyl injections it prolonged things. At this point they are not as effective as they were at the start so when my HGB gets down to 8 I get a Blood transfsion. That was happening every 1-2 weeks for the past yr or so. During that time I had Dacogen infusstions added to my treatments every 28 days. That did help to decrease the number of Bad cells, but after about a year it's effectivness decreased, and the side effects were getting worse. So, I stopped taking it. Within a very short time my WBC came up from under 1 to over 3. That was in itself a blessing, and my HGB has held in the mid 8s for about 2 months now. I know that's not very high, but if I take care and watch what I do it is sure lot better than before. I also take a durg called VONJO that played a major role in shrinking down my Spleen so that i didn't have to have it radiated or removed. All of this has been going on for the past 15 years. You never know what is coming up next, in fact, there is a new treatment do out in September that shows a great deal of promise. I think you have a good while. Just keep a eye on things, if you are able to get by with a CBD once a month, things are not too bad. I have at least one every week and sometimes twice a week. I was also a very active person, and a national competitor in a action sport. No doubt that things have slowed down. You MUST watch yourself and monitor your activities well. If you are strong willed, you can easily over push your body to do things that you should not do. Without sufficient blood supply you can damage your heart and starve your big muscles, so DON'T overdo things. Learn your new limits and stay within them.

I am so very grateful for both of your comments. So, thank you! Yet, I remain unsure. BTW, I am in Canada, where the cost is not the main issue, but access to alternative treatments could be. There is an MDS team in Ottawa, but the hematologist feels that I don’t qualify for a consult just yet. But I am somewhat confused on how our blood counts compare. For instance, my RBC 2.54 L, the HGB is 96 L, and the WBC is 1.8 L. In addition, my hematologist informed me that because of my age (76) I would not be eligible for a stem cell transplant, as well as it being too risky for an infection. Blood transfusions would also be too risky since they might accelerate the leukemia cells. If my HGB starts to drift downward, I might be given HEPO, yet that could predispose me for a stroke. Thus the “avoid infections,” and wait. And nothing else has been prescribed. Once the leukemia cells become more apparent, then chemo. In any event, I remain somewhat active, but now accept taking a nap. 😊 I have started thinking about getting a second opinion, for instance at the MAYO Clinic, but that is not cheap. And would it be worth it?

Hi @jps01, you might also find these related discussions helpful:

- Myelodysplastic syndromes (MDS): When do you need to start treatment? https://connect.mayoclinic.org/discussion/mds-2/
- Myelodysplastic Syndrome (MDS): https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
- Myelodysplastic Syndrome (MDS): how to increase red blood cells? https://connect.mayoclinic.org/discussion/mds/

Thank you. Indeed, I will folow through. merci

Why only monthly blood work ? I do have cancer and ever visit, whether weekly or every appointment I get blood work and the results immediately. My cancer spread slowly over 10 months before diagnosed properly, I was even misdiagnosed. By the time they caught it I was stage 3 Esophageal cancer and 95 pounds. I'm now 2 years with cancer and 130 plus pounds with a permanent feeding tube in my stomach. You need to take charge of your medical and get more frequent tests imo. Don't let it or them blindside you

My diagnosis is Myelodysplastic syndrome. And based my current blookwork, I am in the low risk category, whihc implies a 75% survial of more than 10 years: pretty good. But I am anemic as well as immunocompromised.I am too old for a stem cell transplant. That, and blood transfusions could result in infections, and the blasts cells to accelerate. In other words, I am ok for a while, unless I get an infection. But that risk, coupled with beeing anemic, is a bit of a "pain". Nothing is simple, and all of our conditions seem to be different...

Got it, glad you have 1 of the high survival rate cancers, hate that you have it . Infections are an issue for me too was bed ridden for weeks with a nasty one Late april-May. Blessings to you.

I do feel quite fortunate, in a sense. And you are obvioulsy incredibly courageaous... Are you also anemic. in addtion to all of the other issues?