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My Autologous Stem Cell Transplant Journey - Mayo, Phoenix
First of all I have to give a huge shout out to my whole stem cell team. I can’t think them enough for making such a scary ordeal into something not so bad. It was scary to me cuz I have never been sick a day in my life and I’m 66 years old, diagnosed with Multiple Myeloma February 2023….happy birthday to me. Anyway, I started the transplant journey on July 10th, which started off with what I call the big chemo blast, got a day off then went in for the stem cell harvest. The worst part of that was having then put the catheter in my neck but luckily, they harvested what they needed on my first day, which usually takes at least 2-4 tries to get what they need for 2 transplants. Then starts my Day +1, I’m doing good and continue doing good throughout my whole so far +12 days is where I’m at today. The only side effect I have had from the chemo is diarrhea which in turn caused a few more uncomfortable issues but other than that and feeling tired, really my only complaints. This past Saturday I’m calling my bottom of all bottom days, I felt awful, no energy, but my numbers were all still and required 0 IVs, in fact I’ve only had to have 2 IVs thru this whole process. But they told me to prepare for a platelet transfusion tomorrow or the next day. Yesterday I woke up a different person, my old person, I really felt good, other then the fact of my hair starting to depart my body 😭😭. When they did my bloodwork, my regular labs came back pretty quick but it was taking forever for my platelets and neutrophils were lagging. Well, come to find out the lab was in awe they ran them a few times to make sure it was right, my platelets had come up on their own which is a real rarity evidently, they more then doubled. My nurse said she had never seen it.
That’s my journey so far in a nut shell, it’s been a long road, but at least not too bumpy. Looking forward to seeing this all in my rear view mirror. Those of you who are believers PRAY!! Keep a morecthen positive attitude, gather the biggest support group you can gather, prayer warriors, etc. you need as much good juju as you can get from everybody, not to mention an awesome care giver, hubby has been the best❤️ That’s what I owe my complete success rate so far to. Grant it, I’m not through it all yet but feel the roughest of roads are all behind me.
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Heather! I love your new post/summary of your multiple-myeloma journey!! This is what Connect is all about…sharing and offering hope to others walking the same path. Thank you so much for posting this: https://connect.mayoclinic.org/discussion/a-summary-of-my-multiple-myeloma-journey/
I hope now that you’ve ‘gotten your toes wet’ you’ll jump feet first into more conversations. You never know how many people will be inspired by your story! Hugs!!
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1 ReactionHi @jstpeachey
I am 16 mths post ASCT. Thanks for sharing your story. Are you on maintenance and if yes, which medicine? Ive done 1 yr of velcade and took a pause now because of carpal tunnel syndrome. After wearing nightly wrist splints the symptoms have gone away. But im really not keen to continue with maintenance due to side effects.
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1 Reaction@jstpeachey
Could you share what kind of maintenance are you on?
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1 ReactionI also did stem cell therapy. I am 49 years old. I was so afraid that I would get C-diff. I did not. I had diarrhea as well. Unfortunately, my line port had to be removed the day I entered because it got infected. I was on antibiotics the entire time in the hospital. I also developed 4 blood clots in my right arm and neck from the line port. Everything was administered through a picc line. That was my 7th one in 6 months. Developed another blood clot in my left arm from the picc line. In October of 2019, I was diagnosed with Large B Cell Non- Hodgkins Lymphoma in my right breast. I had a power port put in for that. I had it removed a year later. I feel like I should have had another one put in but my oncologist said no. I was diagnosed with CNS Lymphoma in October of 2025. I did the stem cell treatment in April of this year. I'm quarantined at home. I will find out in September/October time frame if I was "cured". This has been the scariest journey of my life. But I would do the stem cell treatment again if it means more time with my family.
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6 ReactionsGood morning, @liadan876 I had to re-read your message a couple of times to absorb the scope of the everything you’ve been going through the past 7 years! I’d say you’ve had more than your share of medical drama, my dear.
Well, welcome to Mayo Clinic Connect! The story you shared shows the tenacity and resilience you have to keep pushing through adversity. I’m so relieved for you now that you’re home, recovering from your stem cell transplant. The recovery times can feel a little limiting when you’re having to cloister yourself off from socializing. But all the effort early in the recovery pays off for the future.
May I ask, was this an autologous transplant using your own cells or did you have donor cells?
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2 Reactions@jstpeachey . I am 45yr old male. With what seems 7/20 a start date for me to begin this process. My wife will be my caregiver but she is really nervous and has been doing countless research on what to take and what not to take. Anything that you can recommend for her to take as well. I got some awesome advice from @fightingbluehen69 but she is an over preparer and thinking the more the better. She has explained her biggest fears is not seeing me eat and mouth full of sores.
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2 ReactionsYou know, everyone is different. For me, looking back, it was really pretty easy. I had myself all worked up at first, but my care team ay Mayo in Arizona were spectacular. They really eased my mind, and got me thinking positive just after a few short days. I really think that’s key, and the power of prayer. When they tell you to keep your mouth packed with ice through the “chemo blast” (that’s what I called it) do it, no talking if you can help it, just ice, ice baby, lol. I had no sores AT ALL. As far as preparation for your wife goes…..I don’t know what your circumstances will be, we had to rent a condo for 2 months near Mayo, it came with pretty much everything we needed except for good cleaning stuff. Sanitize the heck out of the place as much as you can. Foods?? The only food I craved was comfort food, Schwans at the time was my go to, frozen food which they use to deliver. I did so well, my husband was able to leave me for quick jaunts to the store if there was anything I needed or craved. I took very few naps, so we watched a lot of tv. Try and walk, it was 110-120 most of the time outside so all my walking was done in the 5 story complex we stayed in. Don’t forget your elect. razor, 2 weeks to the day my hair started falling out, that’s no joke. I’m not sure what else to tell you, I hope and pray for you that you have as good of a team as I did, they kept me uplifted the whole way through my process. If you have more questions or I didn’t answer what you needed please let me know, you’ll be fine, just keep that positive attitude and if your a believer, pray, pray, pray.
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