My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

I had to laugh about the doctor who left his crystal ball at home. Next time you should ask if he brought it with him to work. I agree that it’s hard to predict how long GVHD flare would last, but the doctor should have observed enough patients with that specific GVHD to give a better answer.

I would have liked for a doctor to pray for me when I was going through my transplant. This just shows that we are all different, and what would be meaningful for me wouldn’t be for you.

I also had a lot of different doctors since I was diagnosed with AML in 2016. Moving to different states twice since then didn’t help either. For me, it’s important to have a doctor with many years of experience with blood cancers and transplants, someone who listens, answers my questions, explains well what I am experiencing and proposes a course of action.

Most of my oncologists have been top notch. I did have a young oncologist three years ago who ordered an unnecessary biopsy that resulted in me needing a thoracic surgery to treat the biopsy infection that could have killed me. He didn’t listen to me when I told him that the growth wasn’t new and was previously evaluated by another specialist.

Anyway, this unfortunate experience led me to connect with Mayo Clinic and now I have an excellent doctor.

The hospitals infectious disease department revealed that Alex's fevers are being caused by a fungal infection that took hold in his central line. Because the central line was contaminated, they had to remove it and install peripheral IVs. It's day plus 23 and has ANC is now at 260. The small upturn in his health has been a huge relief for both my husband and I. I know there will be good days and bad days but the upward trend in blood counts is tremendously encouraging. Thanks for your continued support and thank you for sharing your journey. 💞

Good morning, @leilab1. Thinking about you and your son today. I hope he’s continuing the steady up hill progress post transplant. Any news?

Good afternoon @loribmt .
I appreciate you're thinking of us and am thankful for your support!
My son's blood counts continue on an upward trend so we are encouraged by this.
There has been a new development: on Day +32 a Pelvic CT scan revealed Pancolitis of Alex's entire colon. He is now also dealing with a staph infection. This is concerning due to the fact that Alex's Grandfather was diagnosed with severe Ulcerative Colitis for which he now has an ileostomy. So the genetic predisposition is a present concern. My other concern is the yeast infection which has been ongoing for weeks. When Alex's Doctor mentioned the possibility of discharge as early as next week, I was taken aback. Why on earth would they release Alex with an ongoing infection?

Good morning, @leilab1 When you say Alex is going to be discharged from the hospital, I’m assuming he’ll be going to another independent living arraignment with your husband? I can understand your reluctance to have him away from the hospital because of his ongoing yeast infection and a staph infection. I’m fairly certain that he would be admitted back to the hospital setting immediately if there are any serious complications.
My entire BMT was outpatient. But there were 2 events that landed me back in the hospital when required. There is a basis behind the discharge…statistics show it can be healthier with faster recovery for patients to be in a homelike setting, away from the hospital. It’s cleaner, less chance for infection. With a more ‘normal’ environment, patients are generally more mobile when they have to be self sufficient…with little things like walking to the refrigerator to get their own snacks, getting up to use the bathroom, walking around the apartment, etc,.

If that’s the case with Alex, I would expect your husband can let his doctors know if there is anything concerning and they’ll have him readmitted asap. Also, he’ll no doubt be returning to the clinic daily for blood work and med checks. He isn’t being dismissed from patient care. He’s just being removed from the hospital setting. However…do not hesitate to ask questions and to find out what the options are for immediate care!

With Alex’s Pancolitis a couple of thoughts popped in my head. His doctors may suggest a colonoscopy where a quick biopsy is taken to make sure he’s not dealing with GVHD. That’s pretty common in the early months. Or, this colitis could also be caused by the antibiotics/antifungals he’s on…or C-diff. The micro biome in the gut can be heavily impacted by the BMT itself and all the meds. Especially now with his yeast infection. Those are notoriously persistent so don’t feel too disparaged. You might talk to the dietician about getting in some probiotics or even a good yogurt. Even something like Activia yogurt can help restore the normal good bugs to the gut.

What are his treatments for the staph infection?

Hi @loribmt

Alex's test results came back negative for C-Diff. so that's a relief!
They won't do a colonoscopy while his bowels are still inflamed. Will definitely do once the infection is cleared. Infectious Disease dept. said that Alex's bowel inflammation is not all that uncommon after BMT and is a result of his increased WBC actually fighting the infection. (?)
The ongoing fungal infection has now spread into one eye! He continues to be on Mycofungen for that. They are now treating the staph infection with Zocin.
Just today, they inserted a New Picc-line. The first one turned out to be the source of the infection and the resulting contamination populated in his bloodstream.
Honestly, I'm frustrated with all these complications 🙁
I'm wondering why it's taking so long for the antibiotic to wipe out this fungus?

Alex’s fungal infection may take some time to get under control. Once it gets a foothold in a BMT patient it can be a challenge to narrow down the specific strain and to get the right antifungal meds to treat it. Sometimes the body’s own defense system can rise to the occasion and help in the process. But antibiotics won’t wipe out the fungus.

Antibiotics are useful, as in Zocin, for his staff infection and they are used as a prophylactic to help him avoid any other infections.

You might find this article on post BMT fungal infections helpful:
https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/fungal-infections-after-bone-marrow-transplant/
Basically, a new BMT patient is given a “temporary” immune system until their new system is robust enough to take over. That can take up to 18 months or longer to mature until the patient is completely off the anti-rejection drug and have all their vaccinations. The usual course of meds for a new patient to be taking are an antifungal, antiviral, 2 antibiotics such as penicillin and bactrim, anti-rejection meds such as Tacrolimus, Protonix to protect the stomach, an usually Ursodial for the liver…plus whatever else they may need.

So don’t be frustrated for Alex if he is taking copious amounts of medications for a long time. It’s what we have to do to survive until we’re churning out healthy, functioning blood products again. His doctor is right, His bowel inflammation isn’t at all unusual after a BMT. Gut, mouth, intestinal inflammation is very common until his WBC can rush to the rescue. He’s still very early in the transplant. The old axiom, “This is a marathon, not a race.”, holds true.

Was he given a prophylactic antifungal immediately after transplant such as fluconazole? I’m just curious to know what his regimen was right after transplant. I was on antifungal meds for 2.5 years to avoid any potential fungal infection. First the fluconazole until I could handle oral meds, then switched to pozaconozole for the remainder of the time, until I was completely off the Tacrolimus (anti rejection med).

There can be many setbacks in the first 3 months of transplant. That’s why it’s critical to generally stay near the clinic for the first 100 days. During that time, things such as gut issues, lung issues, yeast infections, etc., which arise can be come acute, developing rapidly.
So it’s important for hyper vigilance with the patient. Temperature should be taken daily and any health changes, no matter how small need to be noted. My BMT team teased about “Even if you get a new hangnail we want to know about it.”
Though not a magic number, after the 100 day period health situations that arise are often slower to develop and don’t mushroom out of control as quickly.

As a mom, I know you’re feeling pretty helpless and frustrated. How is Alex doing with all of this?

Alex’s fungal infection may take some time to get under control. Once it gets a foothold in a BMT patient it can be a challenge to narrow down the specific strain and to get the right antifungal meds to treat it. Sometimes the body’s own defense system can rise to the occasion and help in the process. But antibiotics won’t wipe out the fungus.

Antibiotics are useful, as in Zocin, for his staff infection and they are used as a prophylactic to help him avoid any other infections.

You might find this article on post BMT fungal infections helpful:
https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/fungal-infections-after-bone-marrow-transplant/
Basically, a new BMT patient is given a “temporary” immune system until their new system is robust enough to take over. That can take up to 18 months or longer to mature until the patient is completely off the anti-rejection drug and have all their vaccinations. The usual course of meds for a new patient to be taking are an antifungal, antiviral, 2 antibiotics such as penicillin and bactrim, anti-rejection meds such as Tacrolimus, Protonix to protect the stomach, an usually Ursodial for the liver…plus whatever else they may need.

So don’t be frustrated for Alex if he is taking copious amounts of medications for a long time. It’s what we have to do to survive until we’re churning out healthy, functioning blood products again. His doctor is right, His bowel inflammation isn’t at all unusual after a BMT. Gut, mouth, intestinal inflammation is very common until his WBC can rush to the rescue. He’s still very early in the transplant. The old axiom, “This is a marathon, not a race.”, holds true.

Was he given a prophylactic antifungal immediately after transplant such as fluconazole? I’m just curious to know what his regimen was right after transplant. I was on antifungal meds for 2.5 years to avoid any potential fungal infection. First the fluconazole until I could handle oral meds, then switched to pozaconozole for the remainder of the time, until I was completely off the Tacrolimus (anti rejection med).

There can be many setbacks in the first 3 months of transplant. That’s why it’s critical to generally stay near the clinic for the first 100 days. During that time, things such as gut issues, lung issues, yeast infections, etc., which arise can be come acute, developing rapidly.
So it’s important for hyper vigilance with the patient. Temperature should be taken daily and any health changes, no matter how small need to be noted. My BMT team teased about “Even if you get a new hangnail we want to know about it.”
Though not a magic number, after the 100 day period health situations that arise are often slower to develop and don’t mushroom out of control as quickly.

As a mom, I know you’re feeling pretty helpless and frustrated. How is Alex doing with all of this?

@loribmt

Yes Alex is on Fluconazole as well as Posaconazole and Vancomycin. They already took him off the Ursidile.

Transplant hospitalization can be a scary time since there is so much going on and the body can’t fight its own battles yet because the immune system is just developing.

I also had a number of complications, but eventually they cleared up enough for me to go home. The doctors used everything in their arsenal to get on top of my complications.

I’m glad you are able to encourage Alex and try to make him laugh. My husband stayed with me throughout my hospitalizations and cheered me up when I was feeling down (which was an everyday thing).

I set goals for myself during that time, so that I had something to look forward to. My first one was to get home and see my newborn grandson, then it was to be with my family for thanksgiving etc. I also looked for things I could do myself to get better, like begin walking and regaining my muscles. Almost everything that happened to me was completely out of my control, and it was important to do something that I could control, even if only on a small scale.