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My wife has had a trial treatment at MD Anderson and did pretty well. Now she's scheduled for stem cell transplant which we know has risks. Just curious if anyone else here has been down that road.
Hi Lori! Thank you for your insight and best wishes. Yes, Wednesday was my fresh stem cell transplant and all went very well. I also slept quite past it all due to the IV Benadryl. This Saturday and Sunday more chemo according to the protocol and then I guess I could be in for some rough days. I’m taking things one day at a time, and, as of now, I’ve been doing great. Hydrating and walking around the unit a lot. I’m sure at some point my minions trying to take up residence and the residual chemo will dance or storm.
I was treated with Revlimid and Vidaza for the MDS till the transfusions became too regular. The staff here has been wonderful. They too remind me to enjoy the good days and rest on the bad. I will keep you updated after the next chemo.
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Hi Gretchen! I’m so happy for you that the transplant went well. Hah, yes, I remember the Benadryl and sleeping through the excitement of the birthday “Cell-abration” as we put it. Will be thinking of you the next few days as you enter the recovery stage. You have a great staff of experienced caregivers and professionals around you making sure you’re as comfortable as possible. Hopefully any side effects will be minimal and the little minions play nicely as they engraft. Just remember, this phase will pass quickly and any miserable days will be only memories soon enough. There’s no reward for trying to ‘tough it out’ without meds if you need them! 😉. Stay strong, stay positive…you’ve got this!! Air hug! Lori.
We wish you a speedy recovery and great health as you recover from the procedure.
Hi Lori! I’m sorry for the late update. Truly everything went very well and the staff was outstanding. Besides a few very tired and sleepy days, I had no other issues and was discharged from Mayo on day +13. It has been so nice to sleep in my own bed uninterrupted. My numbers continue to go up and I hope they continue to do so. My energy isn’t at all what it was before I hospitalized. I do a little and rest a little. I’ve lost almost all my hair and hope it will start growing back quickly. I’m at day 22 now and continue to go in 3 times a week with another bone marrow biopsy next week. Ugh. I know there can still be set back backs but I’m hoping they will not happen. Thank you for your support and insight through this! Gretchen
Hi Gretchen!! Fantastic news! What a relief. I’ve been thinking about you the past couple weeks and wondering how you’re fairing. You’re right on track now with the low energy and hair loss. That’s all reversible and just takes time. Don’t rush the progress.
You may not have setbacks. Just make sure you report anything unusual. I know you’re asked those questions each time you’re in for those critical check up appts. We joked about my team wanting to know if I had a new hangnail. Even the most trivial thing could be important.
Do you have a sedative for the biopsy? I’ve had 10 now. Three without and seven with anesthesia. That’s the only way to go! LOL. Wake up 15 minutes later to crackers and juice! ☺️ Then there’s no dread for getting the procedure. It’s a very important test. You’ll find out the percentage of your DNA to your donor. Ideally it should be 100 % donor and 0% yours. Wishing you continued success and a speedy recovery!! This is all very encouraging! Air hug!! Lori.
Hi Gretchen! Happy Holidays to you and your family. Just checking in to see how you’re doing post transplant. Hope all is going well and you’re getting stronger daily! Wishing you all the best in the new year ahead. Lori.
Lori, you are the best! All has been going very well and I feel great. The only way anyone would know I’ve had a “health issue” is my bald head! I had my post transplant bone marrow biopsy and it came great as did my Cd33. My CD 3 came back at only 40%. I’m waiting for the chimeric lab to come back soon and I’m very much hoping it’s has gone up significantly. Otherwise I might need some more cells.
Thank you for all your support through this. I wish you a wonderful 2021! Gretchen
@waveg ~ Hi Gretchen! A new year with a new immune system! Are the two of you playing well together? I know the new system can be a little obstinate and headstrong sometimes! Rereading your comments from last month, you were still waiting on the chimera results from your BMBX. Hopefully it showed 100% donor/0%recipient DNA or near there. Did you require a supplement infusion? There’s always some “tweaking of the controls” as my transplant doctor loves to say. This past Monday (Day 577-yay!) was my day at the clinic for 19th mo post transplant follow ups, another BMBX and the second round of 9 childhood/adult vaccines, plus Shingrix. I must say, adulting is so haaaard! (In my best whiney voice). Wishing you continued success on your transplant journey. As always, if there are ever any concerns, questions or joyous moments you’d like to share, please pop in! All the best, Lori
Hi, Lori and Gretchen: I read your recent exchanges and thought I would chime in. I am at Day +86 from my BMT for AML. I was at the Mayo Clinic in Rochester, MN and lived there until Day +78 when they let me move home. My side effects from the conditioning chemo were some nausea/vomiting occasionally (not to often) and diarrhea. Both have continued but aren’t as bad. I also had a fever of 101 and a rash post-transplant, so they put me back in the hospital for about 10 days to get things under control. However, I have had very minor side effects since then so I didn’t have to stay near the Mayo for the full 100 days post-transplant. Now I am feeling good, don’t have much fatigue, and am able to walk 2 miles without getting too tired.
My question to Lori – how long has it been since your transplant? I am curious to hear your post-transplant story, as I am wondering what may lie ahead for me! I know everyone’s experience is unique, but I am still interested. Thank you!
@edb1123 Hi Elaine, it’s been a while since we’ve connected. The last posting you were at day +86 and progressing quite well. We transplant ‘babies’ all breathe a little sigh of relief when we reach that mystical, magical Day 100. Now, you must be about 6+ months post BMT. How are you feeling? Any post transplant issues or concerns with eating, energy, GvH? Feel free to share with us how you’re doing. Mayo Connect is a great forum to help others going through our common experiences. Wishing you all the best, Lori.
Thanks for following up with me! I am now at Day +204 and feeling great! However, I had a major setback in late November when I developed pneumonia and acute respiratory failure. It started with a bad cough and then shortness of breath and a fever. I was hospitalized on November 24th for 17 days. I was on oxygen at home for a couple weeks and have been on Prednisone since my release to reduce the inflammation in my lungs, but they are gradually weaning me off of that.
I’m not having any symptoms anymore, but I will have a CT chest scan, pulmonary function test, and bone marrow biopsy in two weeks. My last biopsy in late December did not show ANY residual disease for the first time, so I’m hoping for this result again! 😁
Also, the doctor has discontinued the Tacrolimus, anti-rejection drug, so I can now get immunizations that were wiped away by the transplant process. I’m also trying to get the COVID vaccine as soon as possible.
This may be more information than you wanted, but that’s my update! 😁 Thanks again for your concern.
@edb1123 Elaine, my goodness, that’s not the news I was expecting. I’m so sorry for that setback with the pneumonia. That had to be beyond scary for you and your family! Early in our transplants when our immune systems are still in the infant stage of developing, we’re so vulnerable and small things can turn nasty in a heartbeat. It’s a relief to hear you’re back on the road to recovery! Are you having any side effects with the Prednisone?
Being off the Tacrolimus will at least allow your new immune system to jump to the rescue from now on! Are you still taking any other meds? When you’re off the Tacro and vaccinated, I think you’ll be able to drop a few of those too! Lucky girl! I’m still on .5mg of Tacro daily, along with the assorted colorful blend of pills and will be for some time yet. Long story there for another time. But I was finally able to go ahead and start my immunizations in October anyway and just had the second round the end of January. One more round to go in April and I’ll be an adult! LOL. Now to get the Covid Vax, but must wait a month after the other vaccinations.
Wishing you all the best on your upcoming BMBX, the CT and the PFT. Please feel free to continue to share your transplant story on Mayo Connect. Truly, there are others in this Community who benefit from the experiences we share. Best, Lori.
The only side effect I’ve had from the Prednisone is an increased appetite, which was a good thing as I had not felt like eating while I was sick. I take it in the morning so it hasn’t affected my sleep. I am still on anti-fungal, anti-viral, antibiotic medications and another to protect my liver. It sounds like several of these may be discontinued in the next few weeks.
If the biopsy shows any signs of MRD (minimal residual disease), they will probably start shots of Vidaza (chemo) again. I had them in November, right before I got pneumonia. Vidaza has shown to be effective in reducing/eliminating MRD, and my Oncologist may decide to use this to keep the AML from coming back. Hopefully, I won’t need it! 😉
Thanks again for letting me share my story – I hope it is helpful for others.
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