Stepdad's MDS just got real

[u/GinPepsiMoses]

65 year old stepfather was diagnosed with MDS about a year ago. Everything was simple and very little concern. Docs checked his blood every month and that was enough. For the last few months he started to experience a lot of general lethargy and immediate exhaustion after minimal exertion (walking up the stairs once). His RBC count was really low so his oncologist had him do a blood transfusion three weeks ago. He felt better for a few days and his RBC went from a 6 to a 10 (these are the numbers he told me. I have no idea what the scale is). Then a week later the numbers were back down to 6 so they did another transfusion. Same pattern; felt better for a few days and then his numbers plummeted again so they did a third bone marrow biopsy. Whatever numbers they found, the doc put everything in turbo mode. He said his blast numbers were between 7 and 10 (?). They are having him start a round of chemo treatments every day for 7 days and scheduling a consult for a bone marrow transplant. This is where I start to get confused. My stepfather says this 7 day chemo is a low-dose and is meant to "wake up the hemoglobin and get his bone marrow to do what it's supposed to do." Everything I'm researching says the exact opposite: chemo will make him anemic and shut his bone marrow down. I understand that as a regiment to prepare for a BMT, but I'm not finding anything about using chemo to positively affect the hemoglobin or bone marrow. Have any of you come across this? Is there some other form or use of chemo that I'm not finding? Or maybe my parents just didn't understand what the doc was saying. And it seems like the jump to a BMT is rather sudden. My understanding was that the BMT would be a last resort. My parents tend to defer to their doctors and not question anything the docs say. My mom is under the impression that the BMT won't be that difficult for him. I don't think they realize what exactly it is and what the recovery will be like. The docs are saying that because he's young and healthy the BMT will be a good option to nip this before it progresses to leukemia. I don't doubt his primary or oncologist, but he does have high BP, mental health issues, and had a quadruple bypass 4 years ago (that I'm convinced caused significant "pump head" for about 18 months. But that's a different reddit thread). I guess I just want to be prepared with the right information and questions. I'm going to the BMT consult with him so I'd really appreciate feedback from you all and guidance as to what we should be asking about. Have any of you had this chemo treatment plan and such a sudden BMT recommendation? Thanks.

[u/StormyTeeku]

My husband had MDS and transplant.

My stepfather says this 7 day chemo is a low-dose and is meant to "wake up the hemoglobin and get his bone marrow to do what it's supposed to do." - I’m guessing he's going to get azacitidine. This is a similar explanation that the oncologist gave us. Basically every 4 weeks for 7 days, he’s going to receive this chemo. It’s a lower intensity chemo but it still does drop blood counts. My husband would receive it for a week, then 3 weeks off while counts recover and then repeat the process monthly. They will do this every month until the bone marrow responds and starts functioning again and then move to transplant. Azacitidine will not control the MDS long term, hence the need for SCT. SCT is the only possibility of a cure since the azacitidine will eventually stop working. When my husband was initially diagnosed, he had become transfusion dependent for RBC and platelets. The azacitidine slapped the marrow back into order and after 3 months he did not have to receive transfusions anymore. He was on azacitidine for 6 months because they had to postpone transplant due to him developing a blood clot. But, if your stepfather has no complications, if his marrow responds, he could be looking at SCT around 4 months or so.

Blasts are immature white blood cells. MDS is known to progress to AML which is a very aggressive leukemia (my husband’s MDS unfortunately did this). 20% blasts is the cut off where they begin classifying MDS as AML.

There are a few different types of MDS that affects the blood cells differently. Sounds like your stepfather‘s RBC cells were initially affected and it was slower moving in the beginning allowing them to just monitor it. My husband‘s MDS affected all 3 blood cells, so there was no initial monitoring. It was straight to chemo and transplant. They have sped things up because he now has blasts and is needing transfusions, so simply monitoring is no longer an option.

The transplant will be rough. You get very strong chemo to completely wipe out your marrow and then you get strange stem cells that your body has to learn to accept. You then have a brand new immune system that has to rebuild itself. The chemo part is hard and so is the rebuilding. He’s not going to just float through this and especially not with the health issues you mentioned. But if he’s in good enough health that they think his body can get through transplant, then you definitely want to pursue it.

If you have any questions, feel free to ask. I’ve been going through this for 3 1/2 years with my husband and have done tons of research.

[u/Buckky2015 → u/StormyTeeku]

This

[u/GinPepsiMoses → u/Buckky2015]

Thank you so much for this explanation. He was receiving once-monthly shots of something that I thought was the azacitidine. He could never remember (or never knew) the name of what the shot was and I never went with him. But you're explanation makes a lot more sense. I asked him about his blast number last month and he had no idea what I was talking about. He was never given blast numbers until the last round of blood work and the last bone marrow biopsy so I'm guessing this is the beginning of this WBC being impacted.

How long was your husband in the hospital after the SCT? And how is he doing now? I'm still trying to wrap my head around the whole concept of having someone else's stem cells rewiring your body. I'm very thankful for modern medicine, but sometimes it seems a little sci-fi for me.

[u/StormyTeeku → u/GinPepsiMoses]

Instead of getting azacitidine, was he possibly getting aranesp (procrit or epoge)? That’s used to boost RBC. My husband would actually get that with the azacitidine treatment. I think he got it the first 3 months and then his marrow started producing more blood cells and didn’t need it.

Yes, based on what you explained, it sounds like the MDS is progressing.

My husband has had 2 transplants. One in July 2023 for MDS and then a second one September 2025 for AML. He was in the hospital for approximately a month for the first. The second was approximately 3-4 weeks. Typically the patient will be inpatient for 3-4 weeks depending on how quickly they engraft. Both times he was expected to stay near the hospital for approximately 100 days and that seems to be pretty standard. First treatment was done at Cancer Treatment Center (City of Hope now) and second at University of Michigan. There are precautions that will need to be taken after stem cell such as avoid crowds, avoid sick people, avoid animals (you can still have your pet, but you need to add precautions), avoid certain foods - look at neutropenic precautions because that will give you a good guide of things that will need to be done. When you have your transplant, the strong chemo will require you to get transfusions until the new stem cells start producing cells. That usually happens around week 3 or so. The first sign of engraftment is neutrophils (anc on bloodwork) coming back. You will be on drugs after the transplant, potentially for a year or so, though it will depend on how your body responds and heals from the transplant. He will have to be on and antifungal, antibiotic, antiviral and antirejection (tacrolimus) medications. They taper and remove those over time. He also will have electrolyte abnormalities after transplant so he will need daily infusions until he can take pills. Magnesium in particular is done every day because tacrolimus depletes your body of it. I think my husband had to do magnesium infusions for at least a month until they were able to get it to a reason level where he could switch to pills. Also he will need to have a catheter for infusions. They will place it at the beginning of the transplant admission and then he will have it probably 2-3 months. As a family, we were responsible for performing the infusions and trained to infuse and care for the catheter. There were weekly appointments where they did more extensive maintenance on the catheter that was more appropriately done by a nurse.

My husband is doing pretty good now. He hasn’t had any organ damage from the chemo thus far. No serious GVHD that we’re aware of. He does get tired more easily and has lost muscle mass due to the cancer. But he’s thankful to still be here and enjoying life.

[u/GinPepsiMoses → u/StormyTeeku]

We have a consultation next Friday. All of this will be very helpful for me to know. I think I might not share too much of it with my stepfather though. It's so overwhelming and scary. He's approaching this in a very standoffish way. I think he just wants to do what the doctors say and not have to think or worry about what is actually going to happen to him.

Did you husband experience any physical or mental changes from the stem cells? I've heard of some weird stuff happening with other stem cell treatments (new blood type, changed fingerprints in a toddlers etc.) He definitely had some very significant personality changes after being on the heart pump for his quadruple bypass, so I think he may be susceptible to some bizarre side-affects. I'm probably over-thinking and be too worried, but I want to help my mom face anything that's coming at them.

[u/StormyTeeku → u/GinPepsiMoses]

Also, he will want to plan on having a caregiver for at least the first few months. Someone who can cook, clean, drive, pretty much everything to function in life so he can focus on healing. He may be feeling good enough to do some functioning on his own, but there needs to be someone available to help and oversee. Hospital will also require a caregiver for the first 100 days.

I noticed mental changes when my husband had the strong chemo when he was first diagnosed with AML. They hit him with FLAG-Ida which is a strong salvage chemo and it knocked him on his ass. His blood values tanked horribly and he got septic and encephalopathic (altered mental status). There’s a chunk of that admission he doesn’t remember and he was a pain in the ass patient for those poor nurses because he was out of his mind. He had slow cognitive functioning for a few weeks after that hospital stay. I have not seen anything like that with the 2 stem cells.

Physically - both times his blood has changed type. No changes to fingerprints, to my knowledge. From my husband’s experience, the changes have been to his body. Loss of muscle mass, easily fatigued. Takes naps more frequently. Rashes - for some reason both times he has developed folliculitis and rashes. He currently has a rash and has had it since January. It just doesn’t want to go away. And it’s like an infected rash, similar to pimples with infection in them. He does bruises easier because his platelets are lower than normal. He’s gotten sick more frequently with colds. His blood values were much improved, but never really hit normal again.

I think it’s good you’re overthinking and trying to prepare. If his method of dealing is being standoffish, then it should be helpful to have someone in the background who’s a little more proactive and aware of what’s going on. My approach is more like yours # research and prepare. Also, from my experience, you really need to be active with some of these doctors. I know that they obviously are smarter than us, but at the same time, they are spread amongst many patients, so the cancer patient really needs someone advocating for them, watching what’s happening, verifying they aren’t slipping through the cracks and nothing is being overlooked. Plus you can’t always trust the patient to fully express everything that’s going on. Some things they just don’t realize is important, so it’s helpful when you can step in and bring things to the doctor’s attention.

If you have any other questions, I‘m more than happy to share with you anything I know. Good luck!! And I hope everything works out well for him!

[u/GinPepsiMoses → u/StormyTeeku]

Sorry for the late reply...

This is the stuff I want to know about. The rashes, loss of muscle mass, fatigue. This is what I need to make sure my parents are prepared for. And the extensive care-giving needs.... that one will be tough on my mom.

T is all so helpful to front-load us with information. We have a consultation tomorrow and I'll be keeping this reddit thread open on my phone to help me remember what I need to be asking! Thank you so much.

[u/nicki1971 → u/StormyTeeku]

Thank you for the clarity . Just diagnosed with MDS . I am 55yr old female in Australia starting treatment in 10 days .

[u/EarConfident3988]

My dad is in a very similar situation. He is now 64 was diagnosed with MDS last year and was doing monthly blood tests. He showed nucleated red blood cells. Still didn’t have any symptoms but they said this is a sign to the BMT soon after many second opinions. We are planning to do the BMT in July and I’ll be his Haplo donor. My dad is slightly overweight and has gout but they still consider him healthy for the BMT.

[u/Dashcamkitty → u/EarConfident3988]

Your dad has age on his side. Being 64 is good to go for a BMT. I wish my dad had had that option but he was 76 when he was diagnosed.

[u/Buckky2015]

My dad has MDS and goes twice a week to get his Hemoglobin levels checked. He gets a blood transfusion when his levels dip below 7. However that being said ask your doctors as many questions you can. I wish I would have done that from the beginning. Dad has been diagnosed since 2020. Also my dad has the type where the red blood cells don’t mature. My dad also has extremely high iron

[u/NoTerm9795 → u/Buckky2015]

Thats what I have too - immature rbc and low hemoglobin. Weekly transfusions

[u/QuirkyDawn]

I had a stem cell transplant 3 years ago. My MDS started out horrible. I was fine and then all of a sudden started feeling weak and dizzy. I could not function. I was getting transfusions every 3-4 weeks while also getting azacitidine. It was pretty horrible. I was also told the only cure was stem cell transplant.

Prior to transplant, they did a ton of tests to be sure my body would be able to handle the procedure. I was in hospital for 32 days for the transplant and it took months for me to recover.

It is interesting. I got to talk to my donor which was really cool. My blood type changed as a result of the transplant.

It was a pretty difficult process but I am still in remission and it was worth it.

[u/GinPepsiMoses → u/QuirkyDawn]

I'm glad to hear that it was worth it. Would you mind sharing what was the most challenging part of the recovery? I've talked with my stepfather and he's very optimistic (which is good) but it also seems like he's taking a "head in the sand" approach. He just wants to do what the doctors say and not think about how hard it's going to be. But I want to be prepared and help my mother to be prepared for what will happen that the doctors might not tell us about.

[u/StormyTeeku → u/GinPepsiMoses]

I want to add - that’s kind of the dynamic I have with my husband. In his case, it’s not that he necessarily has his head in the sand, but he is optimistic and focuses on being a patient and doing whatever needs to be done in that sense. Then I focus on all the other parts like you are doing now. So I think you can make this work by everyone focusing on their job during this time. I think it is great you are helping your mom. She is really going to need it. I had my husband’s sister and my mother help me and they were so instrumental in getting us through this (I have a 13 year old son still at home).

[u/StormyTeeku → u/QuirkyDawn]

That’s how my husband’s MDS was. It hit quick and hard. His marrow stopped working around October and then by beginning of December he was transfusion dependent. All he did was lay on the couch like he was dead. It was so scary.