Living with MDS (Myelodyplastic Syndromes)

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

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?

Wow, Lori! Thank you for your wonderful message. It is very comforting to talk with knowledgeable people. Time with the hematologist is so valuable, but it is so short. -- We have been tracking my wife's blood numbers for about 18 months. During those 18 months, only one CBC showed 10% blasts, and that was about a month ago. CBCs in recent weeks show no blasts. Platelets have always been normal, but WBCs have always been low (see chart). We had a second bone marrow biopsy two months ago. -- The current treatment is weekly blood draws and retacrit shots, plus a recommendation from the hematologist "It is time to start Vidaza, but it is up to you." -- My wife has been a caregiver for her 106-year-old Mom for 20 years. In early February the stress of caregiving caught up with her and she ended up in the hospital with a duodenal ulcer and sepsis. It threw her for a loop. Her hemoglobin number got down as low as 5.5 during the hospital stays, but it has been a little better recently. As you know, we are struggling with the Vidaza decision. Thanks for your encouragement. -- Before the hospital episode (it was awful), we had a functional doctor who recommended lots of protein in the diet. It definitely helped and the numbers started to stabilize. But he, too, now recommends Vidaza. -- Finally, I want to make it clear that the chart that shows Ivermectin is just "talking paper" to discuss with the hematologist in detail next week. We will take his guidance. -- signed, the husband!

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.

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?

I am on my 37th Cycle with Vidaza (that's over 3 years) and have not had any side effects. You might get a little tired at times, but not too much. It took three months for the Vidaza to kick in. My labs have been in the normal range ever since. I am 76. Wish you all the best. Good Health to you.
Mike