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

Hi @mary612! This is really wonderful news to know Dane is doing so well. Ugh, I don’t envy him the monthly infusions but I think the light is at the end of the tunnel and it’s not a train this time! ☺️ Dane is so close to the 2 year point and from everything I’ve been told, by several oncologists, along with my transplant doctor, once we get past the 22 month point the odds of a relapse drop dramatically. So, armed with those stats, Dane is definitely nearing completion!

Life is a roller coaster ride, no matter if we’re going through some medical drama or not! So we have to enjoy that ride and get through even the scary times! Your travel plans will be some of the highlights along with meeting your new little granddaughter in Paris! The cruise along the Maine coast sounds fabulous! These ARE the payback moments for all of what Dane (and you) have endured the past two years. My husband and I never stop being out and about, traveling, dining, etc. But it’s important to continue to use caution. You’re right about the masking, hand washing, hand sanitizer when you can’t wash and just using common sense.

This excellent update has me smiling inside. I remember our initial conversations and it was a long, rough road ahead! How lovely and joyous to be nearing the end of treatment and onto the future! Hugs indeed! 🥰

Hello @loribmt !
So good to connect with you again! We are thrilled you also continue to feel good and do amazing things here for so many of us!
Dane completed 19 cycles of maintenance treatment in March. He is at the point where his veins are irritated from the monthly, week long infusions, and he is tired of feeling nauseated for a week to ten days per month. It’s been a lot. He continues to be in full remission (MRD negative), thank God. Strong chimerism and all labs have been very stable. He has great energy (he walked 7 miles yesterday!) but the maintenance treatment is taking its toll. The docs continue to remind us they have no large scale studies to confirm that the maintenance treatment is doing more good than potential harm. They remind us that he had a very high risk mutation and it is rare to boot. His doc has one other patient, a young woman, who had the same mutation, who did not have the option of maintenance treatment 6 years ago and she is doing well. It’s a gamble that Dane continues to wrestle with. They recommended 24 cycles (MD Anderson and Northwestern) so he’s close. But he may not go through with all of them. As you can imagine, we spend many hours discussing this!
He’s also dealt with RSV in January and completely recovered, again thankfully. Just this week he came down with a mild case of human pneumovirus while traveling to Florida (something they swab for when you present with a cough) and the have him on antibiotics just to be safe. He’s doing well and his immune system seems to be working well. He wears a mask in any crowds and he avoids crowds when he can.
It’s very exciting to get closer to his 2 year anniversary. He is planning a fishing trip to Alaska with his son in June. We have a new grand daughter who was just born in Paris! Our grandsons are growing fast and yes throne Ben just after Dane’s transplant will be 2 years old! I’ll go meet my new granddaughter at the end of this month in Paris, exciting!

We are considering taking a cruise along the Maine coast in August on a very small ship…. well before cold and flu season. The docs remind us that he didn’t go through all this treatment not to live his life so they tell him he can travel while also being careful (masking and hand washing).
So the roller coaster ride of life continues!
Thank you for being on this ride with us. It helps so much, especially when you don’t feel alone on this sometimes bumpy ride.
Sending big hugs!
Mary and Dane

@g4c

Thank you. I have a video visit on the 24th, That is cruddy about the overload of steroids side effects.
Together we can keep each other informed and add some hope to each others days.

@mary612

Wonderful news!! I am grateful for myself and for you!! This wonderful group reminds all of us that together we can walk through anything. My donor is from across the seas too. I am hoping for one day to meet him. I look forward to June 12th to wish Dane a Happy 2nd.

Hi @mary612 and Dane! You two didn’t escape unnoticed. LOL. You’ve been on my mind a lot lately and I meant to write a message to see how everything is going! The day starts with good intentions and then…off my brain goes in another direction! 😂
I hope everything is going well for both of you and life has resumed a normal rhythm. And your little grandson is coming up on his 2nd birthday! You had so much excitement 2 years ago around this time!
So, how IS Dane feeling? Is he still in treatment maintenance meds?

@katgob Wishing you a hearty congratulations and all the best wishes on your 2 year transplant birthday! Wow! My husband and I are thrilled for you. We are approaching his 2nd transplant birthday on June 12! Thankful for each and every day and of course, his donor in Germany.
Sending big hugs!
Mary and Dane

@katgob
Hello, I just wanted to mention that I have osteoporosis and osteopenia, at least in part due to the high steroids I was taking for months to treat my skin GVHD. I will have another DEXA in one week so I will get a recent update but in addition to all of my hiking and weight lifting I’ve been using a device called Osteoboost, an FDA approved vibration device to treat/prevent bone loss. If it sounds of interest to you just Google it and it will give you the information. Congratulations on your Cell-abration! We all rise together. ❤️

Happy to hear about your Rebirthday @katgob . Yes Time to Celebrate !!
Thanks for sharing .
@loribmt , I feel so lucky to have you to answer my all worries . You both are amazing people ,So welcoming and encouraged to dream for a life after a mess of Cancer Treatment.
Well I am eagerly waiting for One year to be Completed for my husbands Transplant . We are grateful to God for giving us beautiful Life . after my In laws I am planning to apply Visa for my Mom this Year. So yes Excited too.
I am absolutely agree with the term well balanced diet rich in antioxidant foods, high in colorful veggies, fruit, lean meat proteins, protein-rich foods, beans, lentils, whole grains, etc.. Too much of any one type of supplement in the body can throw off the body chemistry. This is what a follow regularly for him .
Yes, He is using spirometer regularly. What I found is that its due to immune System he got tired very easily .We Discussed his breathing issues with his doctor as well .He suggested Chest CT Scan and Pulmonary Test and it was all ok . Also His weight is increasing in good proportion .
I feel so good when I have any doubt I can ask here and got all my answers . Lucky me
Guys enjoy don't wait for a good time , Please start living to the fullest , love yourself .
Every day is beautiful and precious .
Thanks Lori and Kat........Loads of love

Happy Rebirthday!! @katgob Spring, a time for Renewal for so many of us! Congratulations on Cell-ebration #2! You have been the “Poster child” for how this is all supposed to go! And I so appreciate the input, advice and the encouragement you’ve given all of us over the past couple of years. Not only in the BMT group but also in the breast cancer support group.
You are a force, my dear! Your positive attitude along with your tenacity, resilience and cooperation with your medical teams have gotten you through some incredibly challenging times. 🥰 Time to Cellebrate!! 🧬🎈🧬 LOL Those are supposed to be DNA strands and instead they look like bikini tops! 😂

Good morning, @anitasharma! It’s so good to hear from you!! Can it almost be one year since your husband’s bone marrow transplant??!! It’s always amazing how quickly time zips past! I know those first months of transplant, when you’re ticking off those important 100 days, feels like forever. After that, haha, time speeds up! ☺️

It’s wonderful he’s doing so well. The first year and actually into the 2nd year is still recovery mode. The body goes through a great deal of adapting and healing. Fatigue, at least for me, would come and go. I’d have great energy, like a puppy with the zooms, for a week or so and then boom, I’d require a day or more of just being a pile of mush on the couch. I napped, vegged out with good book or binge watched movies. Recovery simply can’t be rushed and each of us will have a unique journey.

As far as supplements, I’ve had discussions over the years with my team at followups. Should I take supplements to boost my immune system? The answer was always, “Avoid supplements that say they will boost your immune system. The immune system is amazing on its own. When it gets ‘boosted’ beyond its intention then it starts working against itself with examples of Autoimmune diseases. Which we surely don’t want.”
So it’s very important for your husband to discuss with his doctors first before beginning any supplements
Other than a daily magnesium glycinate capsule and calcium with Vitamin D3, (for my bone health) it was suggested that I just make sure I have a healthy, well balanced diet rich in antioxidant foods, high in colorful veggies, fruit, lean meat proteins, protein-rich foods, beans, lentils, whole grains, etc.. Too much of any one type of supplement in the body can throw off the body chemistry. Many supplements are unregulated so consistency of potency, ingredients and side effects are unpredictable. I’m not knocking supplements. There are reputable companies and some people swear by supplementing their diets.

From my own experience over the past few years, my labs showed that taking a brand-named daily multivitamin for women, impacted my liver with too much Vitamin A. As soon as I stopped the vitamins, next labs showed improvement. Took the vitamins again, repeated labs, and sure enough, labs were off again. So it was clearly the vitamin tabs. Similar with too much Vitamin D. That impacted my kidneys! So I’m back to the daily recommended allowance.
I’ve had other supplements such as too much ginger tea causing circulation issues…it’s a vasodilator.

I’ve also been told to never take probiotic supplements for gut health. They can cause an overpopulation in the gut for people who have weakened immune systems. Instead, eat yogurt, drink kefir, eat fermented foods such as Kimchi, raw sauerkraut, all natural foods for gut health. The key is to rely on healthy foods, veggies, fruits, fresh air, a ‘little’ sun exposure for Vitamin D.

For my lung health during BMT recovery, I continued to use my spirometer that I was given during my earlier chemo treatments. I wonder if that would help your husband? It’s just a simple little plastic device to breath into that helps strengthen the lungs. Here’s an article from Cleveland Clinic that shows a spirometer and how to use it. Just a thought… https://my.clevelandclinic.org/health/drugs/4302-incentive-spirometer

Has your husband discussed his breathing issues with his doctor?