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

Hi@tml I’m so happy to hear you have all of this support around you. It’s really crummy though that this started happening right after you retired. My AML symptoms started the day after my 65th birthday. Doesn’t seem fair when we work so hard to stay healthy and expect to cruise into retirement without any obstacles. Fortunately, I did retire many years earlier so I had some great years before my turn with all the medical hoopla.
You sound like there’s a lot of positive things going on in your life that make it worth fighting for. I also love the symphony and theater. It’s just been ages now since I’ve been able to attend! Enjoy Carmen! It’s one of my favorite operas!

Your idea of not looking at test numbers until 3 weeks go by is pretty sound. What’s the old axiom? Ignorance is bliss? Sometimes it’s all we can do to get through the day. Adding anxiety by waiting for blood results can add fuel to the anxiety fire, I know that all too well.
How are you feeling after a couple days on the new medication? Any side effects?

So far 4 days with no side effects except very tired. No rash so far. Hope sleep tonight. Have been doing okay there but last night not so much. Also the fact that it has attacked my rib cage during the weeks if under medication also impacts. I hope it really heals some in 6 weeks or so…I had no idea I had it for over a year with little damage so guess had no idea how much damage it could do. I finally see my original doctor on Thursday and hope I get some good news. I need to walk and get out. Hoping this doctor will work well with the Mayo doctor. Yes think any tests now will not be too much if a change. Maybe in 3 weeks a bit if improvement. I hope there is a good drug mix that will work fast. It was 5 months last time but guess likely longer. Wish not. Hope Revlimid jump starts things. This us such a horrible disease and I was more focused on my lack of immunity than realizing what it would could do with only basic maintenance. Going to Mayo finally made that point!

Also reading a lot since easy to get on my phone. Think would be much better if no pain but always sort of there.

It is good you were diagnosed so quickly! It sounds horrible as well but at least you could get the transplant. When first diagnosed I though about Mayo but so far for us. Missed opportunities over and over….

See the doctor tomorrow so hope can set up working with Mayo. Did a three mile walk as up to 70 degrees. Went out to breakfast with friends this morning. Was stopped at a stoplight in a long line of cars. Looked out the passenger side window and a car was backing up towards me. Hit into our door!!! I was not hurt but lots of damage. She was late taking her kids to school. Even had a backup camera which I guess she ignored. Beginning to wonder if the world is out to get me! Yet another stressor when I did not need one!!! Yes I am not going to look at my labs for the next two months!!! Did you try any diets or just healthy eating? Have cut down on sugar but not keto, probably diet changes not as helpful with a blood cancer than perhaps a tumor type of cancer.

Oh my, what??!! I think you’re due for a rebalance of your universe! I agree, the car crunch was the last thing you needed right now. But I’m glad no one was hurt. Hopefully it can be fixed without too much of a hassle.
I chuckled a little with your comment about the world out to get you. I think we’ve all gone through those phases. It really does seem like the world balances out though. Things will be going along perfectly for years and then out of the blue everything goes haywire. Then, it swings fully back in the other direction. I expect you’re on the upswing right now and life will be back on the positive side!

Good for you, getting out to enjoy the gorgeous weather! It’s awesome to see that you’ve got some energy and doing some normal activities. That make me happy. I think you’re in a much better place mentally than last week.

About changing diets, honestly, if I were you right now, I’d just keep eating healthy foods, veggies, lean meats, good fats, etc. Cutting down on sugar is always a good idea, though I admit dark chocolate finds its way into my mouth on a daily basis! Have to enjoy life, right?!
Even before my leukemia my diet was pretty close to the Mediterranean diet. I always ate super healthy, avoided toxins, didn’t smoke, exercised religiously, still ended up with a random cancer. But in the long run, all of the life choices made before my illness and transplant had a major affect on recovery and health. I heard that repeatedly from my doctors and medical team. So whatever you do now, with your long walks and eating right will go a long way towards the success of your treatment and outcome. ☺️

Good luck with your doctor appt tomorrow. Do you have a list of questions and things you want to discuss?

Yes I do love the dark chocolate and have some almost every day!!! I am not doing keto but have tried some of their treats. I have lots of questions and one raised by my walks. Saw my VO2 was very low and wondered about how to raise it but think the Revlimid might be contributing to that. Tomorrow completes my first week so very happy about that! Other than the myeloma issues all my other labs have been good, liver, kidneys,etc so hope that remains in tomorrow’s bloodwork. We were doing vegan but changed to Mediterranean with the return of the myeloma. Of course was not 100% but felt very healthy! Felt needed more meat protein. Feeling a bit more upbeat, you are right!

Now I read those Atkins treats not so healthy. Well guess should have read before saw in grocery! Oh well dark chocolate is better and only have a few so…alway something! So miss my Talenti Gelato! Sigh!

Having all your other blood numbers looking good is a plus. You’re going into this under favorable conditions. You sound very health conscious so I can really relate to how it feels to have the rug pulled out from under you with this unexpected MM diagnosis. We’ve done everything to stay healthy and yet our immune system let us down. The good news is, we get a chance at a reboot. 🙂

So I hope you get some positive feedback from the doctor today. Be calm and don’t bring up the past failed treatment. Rehashing the past just eats up precious appointment time. Organize your thoughts on paper so that you can click right down that list. I think now that you have a week of treatment behind you and better emotionally, you’ll be able to have a more confident chat with this doctor.
Ok, right now though, my big question is why are you missing and not eating the Talenti Gelato???

I had one as part of my treatment for ITP (autoimmune disease that attacks blood platelets) and cold agglutin disease. It was done as outpatient surgery. I insisted on being unconscious and never felt a thing and had no after pain or other issues. The biopsy confirmed the initial diagnosis and helped my hematologist determine a plan of treatment.