Living with MDS (Myelodyplastic Syndromes)

Hi, @statmatics and husband! You are a united team in your wife’s diagnosis of MDS. I can see you’re both very proactive with trying to find the best solution to treat this blood cancer and that you’re also hesitant to use chemotherapy as one of the options. Rightfully so, that word sparks fear in almost everyone. But it has upsides as it can give us the opportunity to move forward with our lives. I know how frightening and overwhelming a diagnosis like this is. And I also believe that education is power. So I applaud all your efforts to research before starting treatment.

As fellow member (and MDS/SCT survivor @katgob so eloquently stated in her reply to you: “Intimidation can keep us from taking the next step.” She nailed it. It’s important to not let intimidation get the better of you and potentially stand in the way of taking charge of this diagnosis.

The next step for you, @statmatics, is getting on some form of treatment. With MDS there are generally impacts on normal blood cell production. As you pointed out in the chart, there are medications which can help improve diminished red blood counts or infusions for red blood or platelets, etc.. However, depending on the type of MDS, they may have limited longterm impact. There are chemotherapy treatments to help kill off the cancer cells…in this case they are the blasts found in your peripheral blood tests. They are immature blood cells that are primarily only found in the bone marrow. As they mature they differentiate into specific blood cells. When they are found in circulating blood, that is an indication they are growing out of control and if not stopped, will eventually crowd out all of the healthy blood cells. As you can imagine, that’s not sustainable. So the key is to get treatment started. Whether it’s to use meds to replace the low blood count or having chemotherapy to destroy cancer cells. If it may be of some comfort, Vidaza is a reduced intensity chemo that seems to be fairly well tolerated for people in a more mature age group. Yes, there may be side effects but not as dramatic as high intensity chemo.
And the 3rd option is Stem Cell transplant, SCT which is the only potential cure for MDS.

I want to address a couple of items on your chart. First, please delete the ivermectin. There is no proof this works and it can cause more harm than good! Especially in your wife’s compromised health. Also, please avoid loading up on supplements without the approval or guidance of her health team. Too many of any one product can cause their own side effects, especially with blood cancers. Simple supplements like turmeric, ginger, and the like can act as a blood thinner, for instance. If her platelets are dropping, this could be catastrophic. Other supplements can interfere with medications or actually damage liver and kidneys. So please, don’t take this into your own hands at this point. Find a hematologist oncologist that you trust because they will play a key roll in your health.

MDS, especially if there are already blasts present, has the ability to advance into another blood cancer called Acute Myeloid Leukemia. Having had this myself, I’d really encourage you to seek treatment before there is any advancement.
Maybe it would be helpful to have another consultation with your hematologist oncologist to talk over your options at length. It will give you a better understanding of what might be the best place to start in the treatment for MDS.
What are they suggesting? Was it Vidaza? You mentioned SCT, was this mentioned as an option for you?

This is Statmatics' husband. Several people helped me make this chart. Errors? Additions? What do you think of it?

Intimidation can keep us from taking the next step. Your age is important and how you are feeling. The in between may be less of the drug. I did not have excessive blast but low to medium MDS. I chose a transplant. One year later I am doing better than ever. I am now almost 65. Keep chatting with us. Lori will pipe in with info. I will say without a doubt that most side effects i did not have and having MDS and not AML made my transplant journey less complicated. It is understandable to not know which action to take. Be kind to yourself.

The GlobalRPh article reference below tells how a vitamin B12 deficiency can be mistaken as MDS. If you have been diagnosed with MDS, there is a faint chance that the doctor got it wrong and your problem is a relatively simple B12 deficiency, not full-blown MDS. Don't let it build false hope, but the article below is worth reading. If you think it applies to you, take action as described in the article.

reference: https://globalrph.com/2025/04/why-mds-can-be-misdiagnosed-hidden-links-to-pernicious-anemia/

Hi Janetlen -- Sadly I am well aware of the poor prognosis. The doctor gave me all the data and all the statistics (blasts 10% in the bone marrow). Since you did not mention any "halfway treatments," I guess there are none.

@statmatics I hope your Dr told you that the excess blasts puts you at a higher risk of developing AML? Did he tell you what risk level you are at? What level are your blasts at? I know your head is probably spinning, but with the excess blasts, you should probably be aggressive. You can download the IPSS-M risk calculator from mds-foundation.org to determine your risk level as well as documentation about the disease.

HALFWAY TREATMENT?

I saw the hematologist a few days ago. He diagnosed me with "MDS with excess blasts." He gave me three treatment options: (1) weekly blood draws and weekly retacrit, (2) vidaza, (3) stem cell transplant.

I am wondering if there is a "halfway treatment" stronger than (1) but less intimidating than (2)?

They tell me vidaza is chemotherapy. I've seen many family members and friends devastated by chemotherapy. I am intimidated by it.

My husband has been fighting CmL and MDS for almost two Hopefully your hubby doesn’t get both and his MDS continue to stay under control.

I am a retired RN SOENT MY 1st few years in oncology, back in the day chemo was administered in the hospital (83-86). I also dx with melanoma and I stayed away from my books and google! I already knew too much. Thankfully I have stage 1 b and 4 yrs out since excision. Thank you for the moral support

Thank you for your support and information