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

Good morning. It’s difficult to have this level of patience, isn’t it? ☺️ I know you want to snap your fingers and have this treatment and transplant in your rear view mirror. It’s good that you have focus for the future now, so let this medication start working with its goal of reaching a level of remission. To quote the witch from the Wiz of OZ…”All in good time, my pretty…”

I’m combining some of your previous comments in this reply. I don’t want to give you a false impression that an autologous transplant is a breeze. It is still a complicated procedure and will take time for you to recuperate. While my friend I met during my stay at Mayo (not a roommate) had little side effects to her chemo and transplant using her own cells, it’s not everyone’s experience. We all react differently to medications and trauma to our bodies. But after reading your sister’s comments about awful chemo is, I now understand she’s talking about her husband’s experience with pancreatic cancer, if I’m reading that correctly. His experience would be much different than yours. So it’s very difficult to compare cancer treatments for different illnesses.
I’d like to introduce you to @lisal64 who also had an auto transplant for MM. Here’s one of her recent replies which will help you see how much you two have in common!
https://connect.mayoclinic.org/comment/661858/
Regarding compression socks, when I was in the hospital on blood thinner I was also bedridden so I had to wear the automatic compression leg wraps to keep my circulation going. But for a while, I did wear some compressive socks, but not Ted stockings. And now, even though I’m not on any meds, if I’m riding long distances in a car or have to stand for long periods of time, I wear compression sleeves that go from my knee to ankle only. They’re great! Not super compressive but they are enough to keep my various veins happy.
What kind do you wear?

Did you also wear compression socks or just relied on the Enoxaparin?

It is not their decision. Only mine and I cannot wait!!! Wish it were tomorrow!!!

I think they are supportive now but think they read some of the scarier accounts and thought too chancy. One said I did not understand that the Chemo for the transplant was way worse than my weekly protocolS I said I knew that but perhaps only two days and was sure I could tolerate that. Some things on the internet are older and so many are done now that am sure I will prevail. The Mayo doctor did give me the odds but I am a gambler and despite our run of bad luck with this and his car, I think they are still well in my favor.,I will be sharing your roommate’s experience…it might not be mine but then it could be! I will say that no matter what I have taken di far no nausea and a good appetite so will go with that scenario! I am determined to have one if I possibly can! I am so thankful that Mayo seems to think it can happen. Of course way more positive one day 1 before my PET came back. He does seem to think the Revlimid will come through! My sister went with me to my last/first back with her this year. Her husband died two years ago from Pancreatic cancer. He also had diabetes and Parkinson’s, the latter not diagnosed for three years! He had freezing but not the usual symptoms. I do think that when I went into remission they thought I’d escaped a wirse fate and I would have a few years. Sadly it was just the opposite! Had I gone to z Mayo then they would have found it right away since had issues only weeks later but declared as returned on 12/27! Why it took 2.5 months is still beyond me!

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!!!

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?

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.

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?

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. 🙃

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