My Autologous Stem Cell Transplant Journey - Mayo, Phoenix

Posted by jstpeachey @jstpeachey, Jul 24, 2023

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@naiviv

Yes. 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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I have a co worker with MM Amyloidosis but his was with his lungs. He received the same treatments I did of Velcade, Darzalex, Revlimid and dexamethasone (forgive spelling). Of course I cannot say what his pattern of treatment was.
My pattern of treatment was, I started out with once a week for 4 weeks of Velcade darzalex and dexamethasone, and 21 days Revlimid. 2nd Stage was 3 once a weeks VDD, then 3rd to 6th stage went to Darzalex injection week 1 once a month with dexamethasone and Velcade once a week for weeks 1,2, 3, and Revlamid started week 1 of each stage for 21 days. I thought I was going to 1 chemo a month in the maintenance stages but found out I have Darzalex, dexamethasone one day a month, and 21 days of Revlamid. I do have BMBiopsy next week so will see what those results are and if the pattern changes.
Naiviv, I am joining your prayer warriors for your husband. I am 66 like jstpeachey, but our God is a God of Miracles if we Believe For It!! Amen.

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@jstpeachy Thank you in advanced for including my husband in your prayers warriors. I will do the same for you too. My husband needs to go back to Jacksonville Mayo Clinic in 2 wks because his Hematologist wants to be sure which type of Amyloid he has. As I said before he was diagnosed with Cardiac Amyloidosis, -TTR- and for it he is taking Vyndamax. His doctor told him that he needs to make more diagnostic tests to find out if he has the AL Amyloidosis which if found, then he would start with chemo. Also they want to make sure my husband doesn’t have the Amyloid in his kidneys. As of today his physicians don’t want to give him chemo until these final reports. We keep praying for a miracle and that it doesn’t get complicated. Prayers are powerful. By the way did you have a lot of side effects with the chemo? My concern is that my husband has Right Heart Failure caused by the Cardiac Amyloidosis and he is 80 yrs old.

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@naiviv

@jstpeachy Thank you in advanced for including my husband in your prayers warriors. I will do the same for you too. My husband needs to go back to Jacksonville Mayo Clinic in 2 wks because his Hematologist wants to be sure which type of Amyloid he has. As I said before he was diagnosed with Cardiac Amyloidosis, -TTR- and for it he is taking Vyndamax. His doctor told him that he needs to make more diagnostic tests to find out if he has the AL Amyloidosis which if found, then he would start with chemo. Also they want to make sure my husband doesn’t have the Amyloid in his kidneys. As of today his physicians don’t want to give him chemo until these final reports. We keep praying for a miracle and that it doesn’t get complicated. Prayers are powerful. By the way did you have a lot of side effects with the chemo? My concern is that my husband has Right Heart Failure caused by the Cardiac Amyloidosis and he is 80 yrs old.

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The only side effect I had from the chemo was diarrhea and then the after curser of that. I was pretty fortunate, (didn’t think so at the time, lol). With any luck at all he won’t have to have it, we’ll pray for that and a much better outcome🙏🏻🙏🏻🙏🏻

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@jiminmorris

One tool we found very useful in building our support team was Caring Bridge. Most of those who have shown desire to support my wife follow our Caring Bridge daily.

As caregiver to my wife I can say it is nice to have backup caregivers to provide respite care when needed. Sometimes cancer seems to be harder on the caregivers than on the victims. We all need a break once in a while.

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I was super lucky to have a care team of 3 (friends/family) staying with me for the month post-transplant. Because there were 3 of them they were able to keep almost normal remote work schedules and care for me as well. Along with Caring Bridge we had another friend set up and manage Meal Train for them (since I couldn't eat any outside food). It worked really well. Take care of the care givers!

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@heathermcfarland

I was super lucky to have a care team of 3 (friends/family) staying with me for the month post-transplant. Because there were 3 of them they were able to keep almost normal remote work schedules and care for me as well. Along with Caring Bridge we had another friend set up and manage Meal Train for them (since I couldn't eat any outside food). It worked really well. Take care of the care givers!

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Good morning, @heathermcfarland Thank you for sharing these great ideas for what worked for you post transplant with caregivers! Having a Meal Train and tag teaming was a brilliant way for friends and family to help you through a tough period without them feeling super taxed and overwhelmed!

I just realized you’ve not posted before but have been a member since last year. It’s great to see you here and sharing your story can help so many other members with Multiple Myeloma and stem cell transplant. ☺️
From your bio I see that you were diagnosed with MM 9/28/22. When did you undergo your stem cell treatment?
How are you feeling now and are you taking any maintenance medications?

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@jstpeachey

The only side effect I had from the chemo was diarrhea and then the after curser of that. I was pretty fortunate, (didn’t think so at the time, lol). With any luck at all he won’t have to have it, we’ll pray for that and a much better outcome🙏🏻🙏🏻🙏🏻

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Thank you

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In reply to @naiviv "Thank you" + (show)
@naiviv

If they give him a regime of nausea meds, have him take them as prescribed. I followed it to a tea and never had any nausea at all. Couldn’t imagine both ends being broke, lol

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@heathermcfarland

I was super lucky to have a care team of 3 (friends/family) staying with me for the month post-transplant. Because there were 3 of them they were able to keep almost normal remote work schedules and care for me as well. Along with Caring Bridge we had another friend set up and manage Meal Train for them (since I couldn't eat any outside food). It worked really well. Take care of the care givers!

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Never used Meal Train. We are having trouble seeing how having other people prepare meals would work for a severely immunocompromised patient. Much as people may want to help, the food needs to be prepared under very strict and clearly known conditions. Can anybody help explain? Our expectation was that the caregiver would need to prepare most meals, selecting and sourcing ingredients to minimize possibility of contamination or infection.

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Correct - in my case the Meal Train was for my 3 caregivers. A caregiver made my meals under those strict conditions.

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@loribmt

Good morning, @heathermcfarland Thank you for sharing these great ideas for what worked for you post transplant with caregivers! Having a Meal Train and tag teaming was a brilliant way for friends and family to help you through a tough period without them feeling super taxed and overwhelmed!

I just realized you’ve not posted before but have been a member since last year. It’s great to see you here and sharing your story can help so many other members with Multiple Myeloma and stem cell transplant. ☺️
From your bio I see that you were diagnosed with MM 9/28/22. When did you undergo your stem cell treatment?
How are you feeling now and are you taking any maintenance medications?

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I've been meaning to post my experience - thanks for the encouragement - I've summarized it here just now https://connect.mayoclinic.org/discussion/a-summary-of-my-multiple-myeloma-journey/

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