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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 13 hours ago | Replies (578)Comment receiving replies
@loribmt
Hi there! Hoping all is well with you and yours.
When you first told me about Voriconazole, I read the literature that you had sent. It was so compelling that I did further research. Convinced that this was the proper way to proceed, I called my son's nurse and had an extensive conversation. I begged her to relay the info to Alex's doctor and she assured me that she would do so. Later that day, the same nurse called me to report that the doctor decided against starting Voriconazole and would continue with Micafungin. I was frustrated and disappointed but held my peace.
Today when I was reviewing my son's med list, I was taken aback: Voriconazole was newly added to the list! He will stop the Micafungin this Sunday before starting Voriconazole on the 24th of this month.
Thanking you greatly for mentioning the article! And KUDOS to you for finding it for me!!!!
Honestly, I am more concerned about him starting Pentamidine on the 24th. There are some nasty side-effects among which is an increase in blood sugars ; his glucose is already out of range high and his father has been insulin-dependent for years. It will bear watching.
Just when I think that I can start to relax about recovery, something new pops up......:(
Replies to "@loribmt Hi there! Hoping all is well with you and yours. When you first told me..."
We faced blood sugar issues post-ASCT when starting Bactrim and are likely looking at Pentamidine treatments instead. We have been working with a diabetes team at Mayo. The continuous glucose monitor they put in on Day +20 gave us immediate alarms, and allows them to analyze the data and suggest adjustments to insulin and eating habits. Still, the antibiotic therapy needed changing even after we are home from Rochester.
Recovery is a long process! We like to look back at how far we have come…
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Hi @leilab1…I’m always so cautious when tossing out ideas because I am not a doctor ‘nor do I play one on TV 😅” but there are things I can say from experience which may sometimes give a nudge to someone else…that’s all. ☺️ I’m happy if this change in meds helps your son.
I also hope I can ease your concern over the Pentamidine treatment. This is important for him to receive monthly. It’s a breathing treatment meant to protect his lungs from serious Pneumocystis pneumonia that can develop in immunocompromised people. If the treatment does increase his blood sugar his team will be on it and treat accordingly. But don’t let him skip this treatment.
You have to understand, at this point in his transplant, all the rules for what you know about ‘normal numbers’ are off the table. He’s going to have blood numbers, liver numbers, kidney numbers, etc… going up and down for the next few months. Everything in his body is in a state of flux.
If his glucose goes high during a treatment don’t worry about it. This doesn’t mean it will change his numbers for the rest of his life. And if so, then that will be dealt with at the time.
Honestly, it sounds as though Alex’s recovery is really becoming routine and he has a great team on top of everything. I think you can start relaxing about his recovery. ☺️. Though, don’t be surprised by a little excitement tossed in from time to time.
I learned the key to survival with a bone marrow transplant is to always keep flexible, have a sense of humor and a sense of adventure. Life is never boring. But there is a life…Alex will come through this on the other side and he’ll feel pretty invincible for what he’s gone through, overcome and survived! I’m 69 and feel like Wonder Woman… sigh…but lack her body. 🥴