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

Good morning @shemac711shemac711! I got a visual on your comment about having a bad day…I’m sitting here thinking of how many times it was a real struggle to pull up those big girl panties over the past few years. Adulting is so hard anyway without trying to pull those panties up while on a roller coaster ride of medical drama, with emotions all over the place…oh for the days when we had little to worry about besides picking the right day to coincide with our Days of the Week underwear. ☺️

Thank you for your kind words this morning and I’m glad that I’ve been able to use my experiences to help other people over the hurdles of theirs. Never in a million years did I think I’d have a blood cancer. That was not on my bingo card of life! But quite frankly, only because of this cancer odyessy, I’ve had so many positive experiences, a huge educational opportunity, I’ve met amazing and brilliant people, made new friends that I’d never have met, experienced compassion from complete strangers, learned the power of prayer, developed a deep respect for my medical team, science and big pharma…the list goes on. It is an honor to be able to pay ‘it’ forward! All of that was worth pulling up those big girl panties! ☺️

If you’ve been reading through some of the discussions, you’ve probably discovered there are different subtypes of MDS. Mutations in specific genes make the variations between subtypes. Some are more likely to cause MDS to be considered high risk for progressing to AML. From my understanding, other subtypes, like your husband’s tend to be lower risk. But any form may have an impact on blood cell production. So in the case of your husband, his bone marrow isn’t keeping up with red cell production.

His doctor is suggesting Reblozyl to help restore his red blood count to avoid having transfusions. This is a different type of medication than Procrit and is recommended for his specific type of MDS. I’ve found a good article for you to read that compares the two meds. From what it appears, the med his doctor is prescribing would be the better alternative. I think the article might relieve your anxiety a little to read about the benefits.
https://www.goodrx.com/compare/reblozyl-vs-procrit
Certainly all medications come with potential side effects and by law the list of possible reactions have to be listed. But many people don’t experience any ill effects from the meds. Your husband may not have any noticible issues and the benefits of getting his blood count back to ‘normal’ would be worth trying the medication.

I found another member with a similar history as your husband who is also taking Reblozyl for their low risk MDS. I’d like to introduce you to @dabls6 who’s been on this treatment for a while. It might be helpful to read a couple of their comments. I have the links below.

> https://connect.mayoclinic.org/comment/1164875/

> https://connect.mayoclinic.org/comment/1080366/

It’s wonderful your husband hasn’t noticed any changes in his health over the past year and a half. His doctor, noticing a downward trend in your husband’s red cell count, is wanting to keep that from going any lower. If it does go lower he may tire more easily or feel shortnesss of breath after exertion. The medication will help by specifically targeting and blocking molecules that prevent red blood cells from maturing, allowing them to mature properly for a healthy red blood supply.

That’s a lot of information to chew on this morning but I really hope it’s helpful. I’m here any time you need a sounding board. Sending a hug to you and your husband! How long have you been married?

Hi, Lori.

I absolutely love your sense of humor that clearly shows in this post as well as others that you've posted. In addition to that, you are always a fantastic source of information, experience, encouragement, and inspiration. I appreciate you very much, and I'm sure that many others on Mayo Connect appreciate you, as well. 💕

Lori
Having my bone marrow in April
I hope I get good news

Oh my gosh, talk about a brain ‘fuuffff’. I totally went rogue with this one…sorry about that! We’ve had a few new transplant members in the past couple of days so that’s where my head was! So, we’ll bring this back down to a BMBX instead of a BMT. 😀

This bone marrow biopsy will be a good source of information to see if there was success with the chemo. I’ll keep my fingers, toes, and eyes crossed for you for a clean biopsy!
I remember you’d been dealing with back issues that had interfered with the start of the next round of chemo. Were you able to continue with the 2nd session?

Oh my…@my44. Thank you from the bottom of my heart for this incredibly sweet message. It is a warm and fuzzy feeling to be appreciated. I’m so awkward at accepting complements but deeply moved when I realize I’ve be able to help someone or maybe brightened their day. Humor, sometimes inappropriately (😅) has gotten me through some of the seamier moments in life so I tend to inflict it on everyone else. Can you imagine my poor family. 😁

Here I go running off at the mouth again. Cutting to the chase…we’re all on this planet together and I truly believe it’s so important to help each other with compassion and understanding for what they’re going through and offer a hand, an ear or a shoulder…

I also appreciate you for being such a caring and active member in Connect. You’ve had your own medical drama and use your life experiences to support and encourage to members, too. We’re all part of an amazing group of people who are the helpers…an honorable role in our society.
So, thank you, Tif. Your appreciation is like a warm hug. 💞

Great news! I am 351 days past transplant, and minus my very short hair, I feel great. Keep us posted. April 9, 2024, was my transplant.

Hi Lori,
I know I had asked you this before but can't find the post. Where did you stay when you were here at Mayo post transplant? I think you talked about a hotel suite close to Mayo? Thank you,
Sally

Hi Sally, We stayed at the Marriott Residence Inn, 441 W Center. It’s just two blocks from the clinic and has access to the subway (underground walkway) so it’s a straight shot over there day or night, with no exposure to nasty weather.

The first couple of weeks I required a wheel chair because I wasn’t up to walking the two blocks. So it was really convenient for my husband to wheel me over to the 9th floor of the transplant center. (Methodist hospital). We had one trip in the middle of the night and were grateful to be able to just rush over there without having to get in the car, find a parking space, etc. Oh, and Mayo lets you borrow a wheelchair which we took back to our hotel for easy transit.

We opted for a 2 bd/2bath suite so I could have my own room/bathroom. It had a full kitchen with stove/oven, dishwasher, large fridge, all the utensils and dishes, so you can set up housekeeping. The unit even had a fireplace in the ‘living room’ which was a nice touch. There’s a gym and onsite laundry.

When we visited, Rochester, last October (2024) there was a large remodeling project taking place to upgrade all the rooms. I’m eager to see what they’ve done!
(I just checked the website and the new photos aren’t up yet of the remodel. But you’ll get the idea of the rooms and amenities)

Wherever you decide to go, try to sign a lease. If you stay somewhere for 30 days and use a month to month lease, it saves on the county room tax. Most places are very flexible if you don’t stay the entire length of the lease.
Also, many insurance companies offer a room allowance so be sure to ask your Insurance case worker about that.

We really loved staying at the Marriott. (We still return there for my followups) The staff are super friendly and helpful. The rooms are squeaky clean. There’s breakfast in the morning and there used to be Wine Down Fridays? Not for me to enjoy, but my husband took advantage of that. There is onsite parking.

Do you have a target date for your transplant?

I have my 5th BMB April 4th. One at a time, we can get it done. The best truth about our bodies comes from this test. Blasts and white, red, platelets and those counts. The info will provide the roadmap to the next step.