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

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? 😂

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??

You are off three years? Was it MM? I cannot imagine being off them but hope and pray that us possible. Was it the transplant and guess you are checked periodically?

Geez now not know!

Well did the Enoxaparin injection so decided not to wait as Revlimid and Dexamethasone do increase my chances, think it is 10% and with my luck lately not worth the gamble! My husband did it although with lots of cringing! He know says he is ready to wear the stethoscope!!! Halfway through my first go round of Revlimid. I guess I need to call the Mayo Pharmacy to get the next doses shipped soon. Feeling okay today although as others have mentioned, these drugs make one tired, tired, tired! Despite the horrors of chemotherapy, am actually looking forward to having a transplant date! If only…!!!

@tml, How are you feeling since we last spoke a few days ago? I know from my experience that day to day changes do happen. Did you contact your doctor or are you going to wait until Thursday as scheduled?

Guess things get bad as my meds wear off. I need to better manage this. Thanks for all the encouragement. I will try…

No cure yet for our MM yet. Maybe someday. Hope so! Sooner rather than later!

Only 50 people! How incredible and then MM as well!!! You are amazing! Maybe they will have more options in time! That is what my sister keeps saying.

@tml No, the kidney issue was diagnosed formally in 2015, MM wasn't until 2018. We double checked it also, to be sure MM wasn't part of the issue. Because of the MM and nature of the rare kidney disease [only 50 people in the world diagnosed with it!] I am not a candidate for transplant. Working on holding on to function as long as I can before needing to start dialysis, which I will be on rest of my life.

Patience is difficult when you are anxious, isn't it? I certainly can relate to that! You need to give the medications your doctor has chosen, a chance to work. Make sure that you are writing down questions you have for the next appointment. My doctor always looks at my notebook and asks me about anything listed there, what questions I have. He takes his time so I don't leave his office feeling like something was missed.

Happier days are ahead of you, definitely. Great way to approach it all, and life in general.
Ginger