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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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Absolutely agree, I had back up caregivers but never had to call them in. If hubby needed to get groceries, he would get me in for my appt, then take off and go do what he needed to do and be back in time to wait some more, lol. Each appt takes a minimum of 2 hours. That’s my experience anyway. And there were very few days I couldn’t get up and do for myself.
I wish you and your wife the best, there ain’t nothing easy about any of this, I know
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2 ReactionsHe has openly offered to refer me to a group/doctor for BMT. I just never pursued it til now and realized I'm to receive 2 chemos for "maintenance". BMT is a high risk also as they kill off everything. And I had a friend who was single like me who went through it. She had a challenge while in hospital and I was sitting with her. I had to call a medical friend and fortunately got intervention from ER dept. Don't know whatever happened to the floor doctor, but sure it didn't look good on her records. Point is, I think I've been in denial until now because I've done so well with treatments. Didn't really investigate until lately . I think after Biopsy next week will really know what future holds.
Prayers and blessings your way.
Teri
I think I was fortunate enough to be diagnosed very early on, and also so close to the Mayo facility in Phoenix. I’ve really never had to be my own advocate with this hospital, never had to second guess what they were doing to me. I ain’t gonna lie, the huge chemo blast was my biggest fear but it wasn’t as bad as I expected. There is the long term effect with it wiping out your whole immunizations you have ever had your whole entire life, that freaked me out a little but then the thought of getting the Covid jabs out of me is a win win. I really hate to go there, but I was a perfectly healthy 66 year old never been in the hospital other than to have a hysterectomy years ago. Was walking 6-7 miles a day, within days of getting sick from the second vaccine, I never regained my stamina was doing good to get 2-3 miles in a day, then sciatic issues set in, never had that before. Saw a spine specialist here in Az in Jan who found my lesion on my spine, was not there 6 months prior. I know I can’t prove that it’s the cause nor can “they” say that’s it’s not…..just my theory
Good luck to you sweetie, keep us posted
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4 ReactionsHave you checked out Leukemia & Lymphoma website, LLS. Org? It has great resources. I’m praying for answers for you.
My husband will probably start with chemo depending on the results of the immunoglobulins panels. His 2 biopsies showed no amyloid in the bone marrow but it seems it was found that plasma cells are acting up resulting in an increase in proteins. The hematologist told him he doesn’t have the Myeloma but wants to start him with chemo as if he would have the disease. My husband is 80 yrs old. I confess that I am really scared because he has Right Heart Failure and suffers from the results of his Proton Therapy radiation that he had in 2009. He has been in remission for years until these lonths when the cardiologist in Mayo Jacksonville diagnosed him with Cardiac Amyloidosis. His chemo treatment will consist of 2 injections: Velcade + Darzalex (duratumumab) in addition to Cytoxan+ Dexamethasone + antiviral Acyclovir. A cocktail that I am scared of. Did you get this treatment too? My husband also has been taking Vyndamax for his TTR Amyloidosis. The Hematologist mentioned Heart Biopsy but never Stem cell. Get well soon and stay healthy.
Oh my goodness that’s quite the cocktail. I had the Velcade injections twice a week, Zomata once every 3 weeks, took Dexamethasone once a week, and took Revlimid daily for 3 week increments. The Velcade will leave him with strange looking red marks, it’s something that has to be injected very slowly, the slower the do it the less redness. Advise get him some Aquaphor Ointment and rub it in real good and have some type of Benedryl spray on hand cuz it can get really itchy. Bless his hear at 80 we shouldn’t have to be going thru so much, older people and babies, it just ain’t fair. If I could take it all from them I would. Please keep me posted on how he does. I assume your still with Mayo?
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1 ReactionYes. My husband is being taken care of a Cardiologist and Hematologist even though we live in Virginia. My husband was diagnosed in Mayo Clinic this past May and follow ups with his Cardiologist and Hematologist in Virginia. He has not started with the chemo yet because he is waiting for Mayo to give him an appointment with Hematologist & Cardiologist to run more tests before deciding the correct route to go. Mayo Clinic wants to make sure that my husband has the right Amyloidosis. They want to know if he has the AL or TTR Amyloidosis or if there is something else. It has been a long journey for him. They don’t want to start chemo until they differentiate which of the Amyloids he has. So as of today we are just waiting for Mayo call. In the meantime he is taking Vyndamax. I ask God for strength and a sign which way to go.
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2 ReactionsThat’s your best go to’s right now, God, Mayo and lining up a huge prayer warrior group. In that order, lol, I’m on FB and could not believe the huge support group I gathered on there. Even though I didn’t overload then with updates, they would always let me know they’re there.
I wish you both the best of luck, I will add him to my prayer list, what’s his name? He’s in the best hands possible
Yes. I joined a Prayers Group long time ago in FB created by a wonderful physician. I send prayers requests but with no details at all. 🙏🙏
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