Anyone have or heard of MDS with 5q-syndrome?

I’m not sure about that, but I don’t get tired or have fatigue. I do work with 3 to 5 year olds as a health assistant, wearing an N95 mask. If I feel I need to rest when I get home from work, I already told my oncologist and team, that I will rest for awhile. I also have a voracious appetite and I am not supposed to get really hungry either. Looks like I am breaking some molds for MDS-syndrome #5. I just don’t want to have another stroke with going every week going 2X a week as opposed to
the last time of 3X a week and having a mass on my right side of my brain and not being able to move my left side. ( Not losing speech or consciousness either).
No heart problems - did a 28 day MCOT monitor and heart is in the normal range for everything. I have no idea!

Where do you get your energy? 😅 Working with 3-5 year olds would drain me completely by the end of the day! You’ve been through so much already with the stroke and recovery. You’re certainly an inspiration with your resilience and perseverance…and definitely not fitting the typical mold of someone with MDS-receiving transfusions and taking meds to boost red/white cells. Sounds like you’re doing everything right! 💕

I was diagnosed about 3 months ago with MDS 5Q as well. Tried shots, didn't work, now on Remlivid for 3 weeks, and tolerating it well, but not much appetite. I've been told it may be too soon to see results. I'm hoping you are right about 5-10 years of additional life!

My oncologist just changed my immunotherapy drug to the generic one Lenolidomide (SP.) I called the clinic when I got home @ 6:00 PM and it was already the on/call staff. Of course I didn’t get a call back, so I persisted at 8:00 AM to call the oncology pharmacy - no answer there.
I then called my oncologist message line at 8:30 AM and left a message there also - I got a call back from my pharmacist and was told that my doc wouldn’t change anything unless he thought the above drug would be a better fit - I guess he might be afraid I have another stroke (ya think).
I did tell the pharmacist that I got stomach cramps on Friday and the last time I ever got those was when I had my period, some 50 years ago - that I never had stomach cramps recently from anything! This pill is making me get up twice a night after 12:30 AM! (I am still up). I think I am being used as their guenie (SP.) pig. The pharmacist said she is at my clinic on Thursdays and to stop in to see her - if I can get past the people at the front desk!
I am going to ask my doc about the bone marrow stem cell transplant this coming week and let him know Mayo Clinic in Jacksonville FL. does these surgeries quite a bit and my only son lives near there.
If I could get it done over the summer, possibility I could be cured and go back to work FT or get dead😷😱. Only two (2) outcomes, one or the other.
It’s been great replying to you - sometimes I don’t answer right away-
Lizzy

Hi Lizzy. I just want to make sure I understand what you’re saying about the Lenolidomide (Revlimid). Were you on brand name Revlimid before but have now been switched to the generic form? That’s awful if you’re having side effects from the change in meds that you hadn’t experienced before. I know generics are supposed to contain the same active ingredients as brand-name drugs. But they may contain different inactive ingredients affecting color, shape, or taste and some patients react to these ingredients. I had a similar reaction to a med I took a few years ago. Switching back to the name brand med reversed the issues. We never did figure out what the variation in the generic drug was that caused the reaction. I hope you can get this rectified with your doctor!

While it’s not necessary to have a doctor’s referral to Mayo, it can be helpful. Whether or not you’re eligible for a transplant would be left to the doctors at Mayo. There are some determining factors that help you and your doctor make that decision. But it would be good to at least get a 2nd opinion there.
I want to let you know a few things about having an Allogenic bone marrow transplant. This isn’t a surgery at all. This is a lengthy process of replacing your current bone marrow/immune system with stem cells from a donor who matches specific markers in your DNA. It may be a relative or unrelated donor. The actual stem cell donation to you would be similar to having a blood transfusion as the stem cells drip into your blood stream via an IV line. There’s no surgery involved for most cases. (Except for the installation of a port)
For several days before that infusions, there are doses of chemotherapy, known as conditioning, to clear out any cancer cells and to prepare a clean environment for the new stem cells.
The recovery time from the conditioning and the transplant itself can take many months. I’m sorry to say this, because I know you’re hoping to have this done in the summer and then go back to work…but returning to work full time is generally not practical for most patients for at least 6 months to a year.
Most clinics which do Allogenic stem cell transplants request the patients and a care giver to remain near the clinic for around 100 days. Some stays are shorter. But the first 100 days are critical times in a transplant patient’s recovery. So that’s almost 3 months right there. Recovery is a slow, steady process and it can’t be rushed. There is no way to know for sure how quickly you’d be able to return full time.
I found a good article that you might be interested in reading about working after a SCT. This is not from Mayo Clinic but a 3rd party. However the information is relevant for you:
https://www.anthonynolan.org/sites/default/files/2021-01/2338PA_ReturnToWork_Patients_SCT_Web.pdf
I know you’ve mentioned that your son lives near Mayo, Jacksonville. But is he available to be a full time caregiver? Would you be able to recover at his home for several months after the SCT?