Hi Howard, I’d been wondering how you’re doing on the chemo. You asked me in another post about having a SCT and what it was like. This is going to be lengthy so sit back and relax…

I’ll be open and tell you that having an allogenic SCT can be taxing. But you’re already going through a difficult period with your MDS. MDS is not curable and it is progressive. Ultimately a bone marrow transplant (a stem cell transplant) is the only potential cure for this condition.

There are a number of questions that have to be answered before perusing the SCT. First, there will need to be a donor secured for you. Your doctors will run DNA tests and those results will be matched with a potential donor on a national/international marrow registry. This can take some time…weeks or months depending on your genetic profile.

Your doctors will take into account any other illnesses or conditions you have. They are referred to as Comorbidities in case you see that on your portal anywhere.
Before you can go ahead with a SCT, you’ll also have quite a few tests to make sure your body can handle the stresses of the transplant…from the conditioning chemo and the transplant itself.

Most commonly there is a MUGA scan to see how your heart pumps blood, pulmonary function tests for your lungs, kidney function tests, X-rays, CT scans, etc., along with educational classes for food safety and keeping free from infection during and after recovery.

A week before the SCT day…day zero…you’ll start a 5 day course (usually) of preconditioning chemo which clears the marrow and wipes your lymph system. This provides a squeaky clean, cancer free environment for your new cells that will be transfused on your transplant day.
The actual transplant is anticlimactic…it works just like a blood transfusion and takes about 15-30 minutes.

For me, the harder part came afterwards. The first month you may feel nausea, possible digestive issues, mouth sores and extreme fatigue. Every body reacts differently but most experiences the fatigue. After that first month things start easing up a little. Recovery is slow. There is also a risk of Graft Vs Host Disease (GVHD) that you’ll be monitored for. That’s a reaction which is characterized by inflammation in different organs in the body including skin, intestinal tract, etc. But your team would be monitoring daily and you’d be given treatment immediately.

Depending where you have the transplant each clinic is different. I had my transplant at Mayo-Rochester and I can’t imagine being in better care anywhere. Mayo, at least 4 years ago, required transplant patients to live no more than 30 minutes from the clinic for at least 100 days. We are outpatients there but report to the Clinic daily. So you’re not in the hospital but ‘home’ recuperating. For me it was a hotel suite my husband and I stayed in which was 2 blocks from the Clinic.
I recently mentored a woman in my hometown who had MDS and received a SCT. She was actually in a hospital for 4 weeks but could then return to her home 2 hours away. She had to go every 2 weeks for a followup appt. So each center can have different parameters. Honestly, knowing how challenging this is, I really appreciated being so near the clinic for a longer period of time. There can be a number of issues arising that need to be tended to quickly.

You’ll be a number of medications for a while until you’re off the anti rejection meds. That can take several months to a couple years after transplant. They are a ‘temporary’ immune system until your new one is fully functional.

I know this all sounds frighting, Howard. But I have to tell you after about 2.5 -3 months I was feeling better every day. At about 2 years, I felt like nothing ever happened. And now, I’m just days away from my 4 rebirth day. I feel amazing, super healthy. I just had labs run 2 days ago and every single number was right down the middle!

In my experience, the transplant gave me a second chance at life. I’m in a durable remission with no medications, no transfusions and blood tests only every 3 months. It was totally worth the effort.