My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

No, I didn’t have MM, but AML, Acute Myeloid Leukemia and a subsequent bone marrow transplant from an unrelated donor. I was on several combinations of chemo to get and keep me in remission until the transplant. The transplant has its own chemical toolbox. After transplant, no more chemo but I was on meds for anti-rejection, anti fungal, antiviral, 2 antibiotics, Protonix for stomach, magnesium, and a few others when needed. The AML and transplant event are coming up on 3 years. But I’ve only been off the meds for 5 months. It takes time and each person’s requirements are different. But I now feel fantastic and not taking any meds at all except magnesium (by choice) and Calcium/VitD3
Your transplant will be different, using your own cells and your recovery should be a little easier with less adjustment. Your chemo will be much less and I’m expecting fewer post transplant meds too. I don’t know if you’ll be able to shed all your meds. That gets decided as you go along. But for now, whatever you have to take to get into remission and to get healthy it’s vital to continue treatments. Side effects are sometimes just the necessary evil to getting the main job done.

As far as checkups. Initially, blood work is frequent. Daily, when I was living in Rochester the 4 months post transplant. Then care was transferred to my local oncologist/hematologist for blood work. That was weekly, then progressed to 2, 3 and monthly. I’m now at a 6 week schedule.
Is today your next appointment? Do you have your list of questions all set??

Congratulations on taking the Enoxaparin like a trooper!!! Your husband did a great job and now you’ve got that first one out of the way. You really don’t want to gamble with a DVT when you’ve got the meds right there. I bet you feel relieved to have that one literally under the belt, huh?

Getting refills from Mayo Pharmacy is pretty easy but yes, don’t delay. Do it soon because there’s shipping time.
Your meds and your disease make you tired, tired, tired. Believe me, fatigue might be your friend for a while. I know that feeling well. As an active person, not having that energy you’re used to will leave you feeling very frustrated and like you’re losing control of your normal life. I went through that too and it was so difficult to actually ask for help. I’m fiercely independent and never need help! Finding out I was only human was a shock! 😅. So I enlisted my husband when needed, called girlfriends, neighbors were great! Our daughter lives 5 hours but she’d come for 2 weeks at a time to help out. So you might have to make adjustments and slow down. I think I mentioned this before but the hardest lesson I had to learn was to “Listen to my body”. It will tell you what to do!

Don’t dread the chemotherapy. For your particular transplant for MM, from my understanding, it’s only 1 or 2 infusions and then you’re done. You’ll be provided with anti nausea meds to help with that part. And sometimes a few weeks later there can be a little hair loss. But with your reduced doses, maybe not. It’s just easiest going into this knowing it’s not going to be a walk on the beach but it’s survivable and life on the other side of transplant gives you hope for a good future.

Your husband has a great sense of humor. Does he have a white lab coat and a pager now? 😂

Yes he does! Guess that will be next after a few more doses! Sadly he is now looking at travel brochures! How we thought we’d spend our retirement! Since I know what they feel like I was worried at any little cramp or twinge! Am actually looking forward to having a transplant as will go to Minnesota and get away from home for a bit! Even if I cannot do anything, he can visit friends there. Think their town is an eagle sanctuary. They live about an hour from Rochester, Years ago we canoed at Boundary Waters! A wonderful trip. He can see more if Minnesota!!! I am ready to do battle with the myeloma although guess TCell is more Mano a Mano with ones TCell fighting the cancer. The transplant seems more passive in that the process cleans them up and replaces them. Whatever works…!!! Hope it does not take so long for remission…

Oh that is right…I now remember you shared that! Although I know with so many of the stories so much is individual. I think I will do okay with the chemotherapy although my sister seems to think it will be much more horrific than I know. I realize not like current treatments but know it us for a limited time. As horrible as it might be. If I can get to a real remission, it will so be worth it!

How long after remission were you scheduled for a transplant? Guess it is many months?

Oh there’s nothing like well-meaning relatives, LOL. I could have avoided chemo altogether and had my mutation-caused cancer cured if only I’d had daily drinks of raw asparagus juice and used essential oils according to one relative. Sigh. Giggle.
Your sister isn’t being helpful by giving you horror stories for chemo. If I may put it into perspective for you. From what I have learned from others who have had MM and gone on to have a transplant (including a friend who was my buddy while I lived in Rochester) the chemo prior to that procedure was only 1 or 2 infusions. My friend never even lost her hair and had a week of a little nausea.
My chemo was aggressive. AML is treated quickly and heavily with a course of induction chemo called 3+7. One drug for 7 days with 3 days of another drug running concurrently. That 3 day drug is called the Red Devil. So you can only imagine. LOL. Even in remission I had more chemo to keep me that way. I also took an abrogating chemo drug at home to keep the mutation controlled.
Every 28 days required another week in the hospital with chemo for 7 days. Transplant was 5 days of chemo with 2 formulas. It’s not a picnic but I lived through that. So, by your sister’s reckoning I’d be pushing up daisies from the under side. I’m not! I’m in the best physical health I’ve been in for years! I’m 68, last night I check my FitBitch before bed and saw that I had 27,053 steps, 10 miles and burned 2400+ calories! This isn’t unusual for me at all. I walk at least 7-8 miles daily. Chemo didn’t kill me 3 years ago. I’m alive because of it.
So yes, my dear, chemo is powerful and sounds scary, but it is something to be respected for its ability to kill cancer and return us to health. Yes, there are side effects but it can also buy us precious time.
I’m happy to hear you’re planning on having the transplant in Rochester! You couldn’t be in better hands than there! Your husband will keep busy while you’re preoccupied. We love it there too and so much to do in and around the city.
You’ll be back to your post retirement travel plans soon enough. I just got back from 6 weeks in Florida. We’re finally back on track too. 🙃

My last chemo treatment ended April 16th, 2019. My transplant was June 28, 2019 with a bone marrow biopsy May 15th and another one the week before transplant to make sure I was in remission. So just a little over 2 months from last chemo to the transplant.
Because you’re not waiting for a donor, yours could be sooner. You’d need to be at Mayo to start cell harvesting but I think you can do that a week or 2 ahead and then go right into transplant. That will be something to discuss with your team when you get to that point. Were you given a time frame?

Sounds wonderful. 2 if my 3 sisters were originally against a transplant even though in the end I was given no choice nordid they do the stem cell harvesting which the Mayo doctor was surprised at. Even my two coaches through the crowd had that done. They used my age. Even though I have consistently good labs for glucose, liver, kidneys and we were often biking 20 miles or so, they made that choice for me and not with me. I am happy to have a chance at Mayo. Of course they now say will be done here but now it is my choice if I attain remission and meet any other requirements there might be.

I’m a little confused. Are you saying that 2 of your 3 sisters are against you having a stem cell transplant which could ultimately extend your life? I don’t mean to be snarky but why are they making life altering decisions for you? This is between you and your husband (your caregiver) with the final declaration being yours!
From my understanding, with your health diagnosis, is that you fall into a higher category of relapse. You’re already seeing that happen with the current progression of your disease. By your sister’s suggesting you shouldn’t follow through with a transplant, it’s almost like they’re willing to throw in the towel. But I see you as a fighter who wants to enjoy her retirement with her husband! And if this is a way to increase that quality of life and life expectancy then this is what you’ll do. It’s just a little detour on the journey of the rest of your life.

I’m curious though about why they feel this way. Risk? Well, life holds no guarantees even with a transplant but you know for certain that this remission you’re trying to achieve won’t last. With a transplant you’ll have a greater chance of longevity. Again, with using your own cells you don’t have the risk of graft vs host to deal with so recovery is quicker and so is your hospital stay. You’re in great physical shape and there were no Red Flags for the team at Mayo.
I think in this case knowledge is power. So please, from now on, YOU take charge of these decisions along with your husband and doctors. If you have this done at Mayo, you’ll be part of your own team. You make decisions with your doctor and team. You’ll have educational classes, and pre-transplant testing all designed to make your experience as successful as possible.
Your sisters should be thrilled you have this option in front of you, right? What do you think?

That sounds great. I was worried it might be many months. Although know all depends on getting back to remission! I am so depending on Revlimid! It was 5 months originally so with any luck July or August. I lost an entire year! I said to my husband maybe he and my son could perhaps go and canoe at Boundary Waters for a week while I am there. Remember seeing the petroglyphs there. Always meant to go back and we still have our canoe. I would hopefully be in isolation so they can just enjoy some of the time outdoors. Not sure if as easy as back then but good weather in late summer! I will be so afraid to see the numbers next month!!! The first time it was contained mostly in the bone marrow and now it is in several places. Not sure if harder to eradicate. Hope not! The faster the better!!! I was not so stressed the first time and was fine as it slowly dropped. Guess I am hoping for a bit more but perhaps should give it a few months at least!!!