Acute Myeloid Leukemia with Aberrant CD7

Good morning, Lodi! Thought it was time to drop by to see how you and your husband are holding up. He should be making some headway by now after his transplant.
How are YOU doing?? I know this has been a difficult challenge for you too as a caregiver. Not every patient is the best when it comes to consideration of the person who is by their side 24/7.
sending a huge hug for support. Let me know how you’re both doing.

Hi dear sweet Lori...

You continue to blow me away with how much you know and how much you care about each and every person! An angel who is so knowledgeable.

Believe it or not, I think about getting back in touch with you almost daily. One of the frustrations I have is that I always find it difficult to get back to our thread so I put it off sometimes. Is it just me or it it the site? I'd like to save the thread and print it so I don't repeat myself and also retain more of your thoughts.

Life is good...meaning that he has only one GVHD symptom and it's mild. His face gets bright red and his cheeks swell up. The doctor recommended over the counter 1% hydrocortisone combined with vaseline 3 times a day. It has improved a lot.

As an aside so you have the big picture. I may or may not have told you my partner was diagnosed with an idiopathic eye condition called Uveitis in 2017 which can lead to blindness. It has been managed with steroid drops and eye pressure drops along with Methotrexate. He dropped the MTX after the AML diagnosis but has not seen an opthamologist for a long time. The transplant doctor said it is hard to distinguish the Uveitis from the ocular GVHD. Nobody can really help him in a comprehensive way unfortunately.

Then 2 years later he got MAC lung. Mycobacteruium Avium Complex a rare non contagious form of TB. The ID doctor was worried the untreated lung infection(drugs are rough and often don't work,) could cause the MAC infection to spread. Fortunately the anti-fungal, anti-viral and anti- bacterial drugs took care of that for him during the chemo and transplant process. He is still on some of those drugs post transplant I believe.

It has been brought to my attention, that this AML/MDS ( quite low white blood cell count since 2015 with no further action taken), could be at the root of both the autoimmune Uveitis, and MAC which is caused by opportunistic infections.
I know it may seem irrelevant at this point. But it bothers me a lot. And it is of no interest to the doctors. But I think this would be of interest to the clinical research community. Another time maybe I guess. Have to stay focused.

Hoping I am not overwhelming you.

Meanwhile I have made a few friends. One a caretaker and one a patient and I am helping them both by sharing my research and resources. In fact is it OK if I direct them to you for additional support?

For another time. I am working on a memoir and hoping to realize some dreams. I do have a professional writing background so that should be helpful.
If you know of any professional resources by any chance thanks for letting me know.

With love 💖 and so much appreciation.
Lodi

Hi dear sweet Lori...

You continue to blow me away with how much you know and how much you care about each and every person! An angel who is so knowledgeable.

Believe it or not, I think about getting back in touch with you almost daily. One of the frustrations I have is that I always find it difficult to get back to our thread so I put it off sometimes. Is it just me or it it the site? I'd like to save the thread and print it so I don't repeat myself and also retain more of your thoughts.

Life is good...meaning that he has only one GVHD symptom and it's mild. His face gets bright red and his cheeks swell up. The doctor recommended over the counter 1% hydrocortisone combined with vaseline 3 times a day. It has improved a lot.

As an aside so you have the big picture. I may or may not have told you my partner was diagnosed with an idiopathic eye condition called Uveitis in 2017 which can lead to blindness. It has been managed with steroid drops and eye pressure drops along with Methotrexate. He dropped the MTX after the AML diagnosis but has not seen an opthamologist for a long time. The transplant doctor said it is hard to distinguish the Uveitis from the ocular GVHD. Nobody can really help him in a comprehensive way unfortunately.

Then 2 years later he got MAC lung. Mycobacteruium Avium Complex a rare non contagious form of TB. The ID doctor was worried the untreated lung infection(drugs are rough and often don't work,) could cause the MAC infection to spread. Fortunately the anti-fungal, anti-viral and anti- bacterial drugs took care of that for him during the chemo and transplant process. He is still on some of those drugs post transplant I believe.

It has been brought to my attention, that this AML/MDS ( quite low white blood cell count since 2015 with no further action taken), could be at the root of both the autoimmune Uveitis, and MAC which is caused by opportunistic infections.
I know it may seem irrelevant at this point. But it bothers me a lot. And it is of no interest to the doctors. But I think this would be of interest to the clinical research community. Another time maybe I guess. Have to stay focused.

Hoping I am not overwhelming you.

Meanwhile I have made a few friends. One a caretaker and one a patient and I am helping them both by sharing my research and resources. In fact is it OK if I direct them to you for additional support?

For another time. I am working on a memoir and hoping to realize some dreams. I do have a professional writing background so that should be helpful.
If you know of any professional resources by any chance thanks for letting me know.

With love 💖 and so much appreciation.
Lodi

Hi Lodi! It’s great to hear from you!! You’ll see a reply box right above this one with instructions how to easily find our conversations for future reference. I lose conversations too! ☺️

Ok, from my reckoning your partner is about 80 days post transplant? Hasn’t hit that ‘magical’ 100 day mark. At that point any GVHd that surfaces tends to be less voracious and considered chronic instead of acute. So for now, he should still be on all his medications. They will include his anti-rejection drug (probably tacrolimus), an antiviral, antifungal, one or two antibiotics, ursodial for his liver and possibly a proton pump inhibitor for his stomach and magnesium.
He’ll remain on those meds for as long as he’s taking the tacrolimus (or similar). That immunosuppressant, like the name says, is holding back his immune system from trying to attack his body. By doing so, he has no working immune system right now and is vulnerable to everything. So his bottles of pills are subbing for his immune system. Even as he weans off the Tacro and other meds, it will take 2 years for a new immune system to be fully up and running and it will never be as robust as the factory installed model. ☺️. He will always be considered immunocompromised.

Really have a doctor keep tabs on the potential lung condition too. Again, you don’t want things that are small now, to become a major issue later. It can happen very easily with a new transplant patient. I’m not trying to frighten you. It is what it is. We stem cell transplant people are on some untested grounds as far as how things will affect us. Nothing is certain and definitely doesn’t go by the book.

You didn’t mention his pre-existing conditions before. But there is some potential good news! With his new immune system his previous existing autoimmune conditions will be gone! He starts with a clean slate. So I agree, it would be interesting for his doctors to take a look into his eye situation (no pun intended) to see if this is the case!
He really needs to see an ophthalmologist soon to make sure he’s not having any GVHD in that eye! If something can be done now, it might be caught before it becomes chronic.
His transplant doctor is in no position to diagnose an eye GvHD issue. I had some unusual things happening to my eyes about 2 months after transplant and my doctor sent me immediately to an ophthalmologist. It was easier because I was at Mayo and they work so seamlessly between departments. But I learned early on, you don’t let any little thing go…it can become dire very quickly.

Skin is a big issue for GvHD so I’m happy to hear the steroid cream and Vaseline is helping. It should get less over time but he has to be really vigilant to stay out of the sun and to keep his skin lotioned up all the time.

Lodi, I’m so relieved you’re finding someone local to talk with and to help out! By all means have them contact me on this forum or, I can easily be reached by private message too. Click on my bio of @loribmt and there’s Send Private Message in the lower left corner.

Oh that’s fabulous to write your memoirs! You need some time to devote to yourself and no better way to do that then re-explore your beginnings and see how far you’ve come! What professional resources are you looking for? I have a very dear friend who is a writer and helps others write their memoirs.

Hi Lodi! It’s great to hear from you!! You’ll see a reply box right above this one with instructions how to easily find our conversations for future reference. I lose conversations too! ☺️

Ok, from my reckoning your partner is about 80 days post transplant? Hasn’t hit that ‘magical’ 100 day mark. At that point any GVHd that surfaces tends to be less voracious and considered chronic instead of acute. So for now, he should still be on all his medications. They will include his anti-rejection drug (probably tacrolimus), an antiviral, antifungal, one or two antibiotics, ursodial for his liver and possibly a proton pump inhibitor for his stomach and magnesium.
He’ll remain on those meds for as long as he’s taking the tacrolimus (or similar). That immunosuppressant, like the name says, is holding back his immune system from trying to attack his body. By doing so, he has no working immune system right now and is vulnerable to everything. So his bottles of pills are subbing for his immune system. Even as he weans off the Tacro and other meds, it will take 2 years for a new immune system to be fully up and running and it will never be as robust as the factory installed model. ☺️. He will always be considered immunocompromised.

Really have a doctor keep tabs on the potential lung condition too. Again, you don’t want things that are small now, to become a major issue later. It can happen very easily with a new transplant patient. I’m not trying to frighten you. It is what it is. We stem cell transplant people are on some untested grounds as far as how things will affect us. Nothing is certain and definitely doesn’t go by the book.

You didn’t mention his pre-existing conditions before. But there is some potential good news! With his new immune system his previous existing autoimmune conditions will be gone! He starts with a clean slate. So I agree, it would be interesting for his doctors to take a look into his eye situation (no pun intended) to see if this is the case!
He really needs to see an ophthalmologist soon to make sure he’s not having any GVHD in that eye! If something can be done now, it might be caught before it becomes chronic.
His transplant doctor is in no position to diagnose an eye GvHD issue. I had some unusual things happening to my eyes about 2 months after transplant and my doctor sent me immediately to an ophthalmologist. It was easier because I was at Mayo and they work so seamlessly between departments. But I learned early on, you don’t let any little thing go…it can become dire very quickly.

Skin is a big issue for GvHD so I’m happy to hear the steroid cream and Vaseline is helping. It should get less over time but he has to be really vigilant to stay out of the sun and to keep his skin lotioned up all the time.

Lodi, I’m so relieved you’re finding someone local to talk with and to help out! By all means have them contact me on this forum or, I can easily be reached by private message too. Click on my bio of @loribmt and there’s Send Private Message in the lower left corner.

Oh that’s fabulous to write your memoirs! You need some time to devote to yourself and no better way to do that then re-explore your beginnings and see how far you’ve come! What professional resources are you looking for? I have a very dear friend who is a writer and helps others write their memoirs.

Hi Dear Lori-

So, here I am again, back three weeks later and I always feel badly about my delayed response because of all your amazing efforts. I hope you understand that I am very appreciative of your detailed quick responses. I get very overwhelmed with our endless "to-do" lists, overwhelmed emotionally, always living with a constant underlying sense of unease. Sometimes, just getting through each day is all I can do. And we are grateful as he has had almost no side effects. I appreciate your caregiver links and I did look at the Podcast. I am aware of what a caregiver should do to take care of themselves but will do better soon. Anxious about the next BMB and getting past day one hundred. We are at day 90 today! Thanks for the update on what to expect with medications Learning from you from the patient’s perspective is most helpful because I gain insight into the disease process and how to best to put myself in Richard's shoes.

I had not yet mentioned Richard's underlying conditions. It has been 6 months since he had a CT scan of his lungs which is typical, but with the new diagnosis and treatment, I think somebody should be watching over his lungs more closely. There was no pulmonologist on the transplant team. Same with his eyes, which is less of a concern as he controls mild symptoms with limited use of steroid drops. You are lucky to have Mayo and all that great coordinated specialist care.

He has started to move in the right direction as he has recently reached out to a couple of his pulmonologists and is scheduling a lung CT scan tomorrow. There was no pulmonologist on the transplant team. I think his eyes, since they are doing okay for the most part, will have to wait because of the Pandemic.

Re: the memoir. I am a decent creative writer, and I may have mentioned I wrote professionally for architects and engineers, which is helpful. I have been looking into the boundless information online re: coaches, courses, and it is overwhelming. Since the Pandemic, everyone wants to publish their stories. It is a very crowded field and too many options to choose from re: authors, coaches. Hoping to identify a coach or course led by an experienced instructor/author with a track record in medical narrative or medical memoirs if possible. I would like to identify someone who is work a professional who can help me through the entire process including concept development, the narrative, publishing, and marketing. Right now, I am feeling a little discouraged because everyone is telling a story, and many, are high quality. I am also a fairly accomplished painter and was considering integrating the artwork with the narrative.

I know you have so much to be thankful for and you deserve the best of luck in life! Wishing you a wonderful holiday season…including good health above all, inner peace, and lots of joy and humor. Do not forget to hang a guardian angel on your tree, one in your image, who faithfully guides your loyal following and yourself as well, down this complex winding path.

Warm regards and hugs too,
Lodi

Hi Dear Lori-

So, here I am again, back three weeks later and I always feel badly about my delayed response because of all your amazing efforts. I hope you understand that I am very appreciative of your detailed quick responses. I get very overwhelmed with our endless "to-do" lists, overwhelmed emotionally, always living with a constant underlying sense of unease. Sometimes, just getting through each day is all I can do. And we are grateful as he has had almost no side effects. I appreciate your caregiver links and I did look at the Podcast. I am aware of what a caregiver should do to take care of themselves but will do better soon. Anxious about the next BMB and getting past day one hundred. We are at day 90 today! Thanks for the update on what to expect with medications Learning from you from the patient’s perspective is most helpful because I gain insight into the disease process and how to best to put myself in Richard's shoes.

I had not yet mentioned Richard's underlying conditions. It has been 6 months since he had a CT scan of his lungs which is typical, but with the new diagnosis and treatment, I think somebody should be watching over his lungs more closely. There was no pulmonologist on the transplant team. Same with his eyes, which is less of a concern as he controls mild symptoms with limited use of steroid drops. You are lucky to have Mayo and all that great coordinated specialist care.

He has started to move in the right direction as he has recently reached out to a couple of his pulmonologists and is scheduling a lung CT scan tomorrow. There was no pulmonologist on the transplant team. I think his eyes, since they are doing okay for the most part, will have to wait because of the Pandemic.

Re: the memoir. I am a decent creative writer, and I may have mentioned I wrote professionally for architects and engineers, which is helpful. I have been looking into the boundless information online re: coaches, courses, and it is overwhelming. Since the Pandemic, everyone wants to publish their stories. It is a very crowded field and too many options to choose from re: authors, coaches. Hoping to identify a coach or course led by an experienced instructor/author with a track record in medical narrative or medical memoirs if possible. I would like to identify someone who is work a professional who can help me through the entire process including concept development, the narrative, publishing, and marketing. Right now, I am feeling a little discouraged because everyone is telling a story, and many, are high quality. I am also a fairly accomplished painter and was considering integrating the artwork with the narrative.

I know you have so much to be thankful for and you deserve the best of luck in life! Wishing you a wonderful holiday season…including good health above all, inner peace, and lots of joy and humor. Do not forget to hang a guardian angel on your tree, one in your image, who faithfully guides your loyal following and yourself as well, down this complex winding path.

Warm regards and hugs too,
Lodi

Hi Dear Lori-

So, here I am again, back three weeks later and I always feel badly about my delayed response because of all your amazing efforts. I hope you understand that I am very appreciative of your detailed quick responses. I get very overwhelmed with our endless "to-do" lists, overwhelmed emotionally, always living with a constant underlying sense of unease. Sometimes, just getting through each day is all I can do. And we are grateful as he has had almost no side effects. I appreciate your caregiver links and I did look at the Podcast. I am aware of what a caregiver should do to take care of themselves but will do better soon. Anxious about the next BMB and getting past day one hundred. We are at day 90 today! Thanks for the update on what to expect with medications Learning from you from the patient’s perspective is most helpful because I gain insight into the disease process and how to best to put myself in Richard's shoes.

I had not yet mentioned Richard's underlying conditions. It has been 6 months since he had a CT scan of his lungs which is typical, but with the new diagnosis and treatment, I think somebody should be watching over his lungs more closely. There was no pulmonologist on the transplant team. Same with his eyes, which is less of a concern as he controls mild symptoms with limited use of steroid drops. You are lucky to have Mayo and all that great coordinated specialist care.

He has started to move in the right direction as he has recently reached out to a couple of his pulmonologists and is scheduling a lung CT scan tomorrow. There was no pulmonologist on the transplant team. I think his eyes, since they are doing okay for the most part, will have to wait because of the Pandemic.

Re: the memoir. I am a decent creative writer, and I may have mentioned I wrote professionally for architects and engineers, which is helpful. I have been looking into the boundless information online re: coaches, courses, and it is overwhelming. Since the Pandemic, everyone wants to publish their stories. It is a very crowded field and too many options to choose from re: authors, coaches. Hoping to identify a coach or course led by an experienced instructor/author with a track record in medical narrative or medical memoirs if possible. I would like to identify someone who is work a professional who can help me through the entire process including concept development, the narrative, publishing, and marketing. Right now, I am feeling a little discouraged because everyone is telling a story, and many, are high quality. I am also a fairly accomplished painter and was considering integrating the artwork with the narrative.

I know you have so much to be thankful for and you deserve the best of luck in life! Wishing you a wonderful holiday season…including good health above all, inner peace, and lots of joy and humor. Do not forget to hang a guardian angel on your tree, one in your image, who faithfully guides your loyal following and yourself as well, down this complex winding path.

Warm regards and hugs too,
Lodi

Hi Lodi! Just popping in for a pre-holiday check up. 🤶🏻 How’s Richard doing? He’s in month 4 post SCT now. He should be cruising along a little easier with life taking on some normalcy and predictability. He’ll also be able to resume a few more activities around the house as his energy and stamina pick up. As always, avoiding illness is his goal. So, masking up is essential anywhere out in public or if people are in your home.

This is where I add; With a SCT you really need to keep a sense of humor and a sense of adventure because there can be these random, capricious side events at any given time, especially if there’s a Tacrolimus taper. Usually nothing earth moving…aches here, a rash there, tender joints, etc. He should report anything out of the ordinary to his team for consideration.
While he’s past the early stages of transplant where Acute graft vs host can run rampant, chronic GvHD is always a possibility, but generally develops slowly and is most often manageable. You just don’t want to let it get out ahead.

I hope you’re also doing well and getting back into a rhythm for yourself. It’s a challenge to balance everything. I know you’re compassionate and caring, and have dedicated the past year or so to getting your husband healthy and whole. But it’s easy to lose yourself in the process. You have your artistic side that needs to be expressed! So I do hope you’re finding the path back to YOU!

We’re getting ready to leave your warm state of Florida to return to Wisconsin for the holidays. Brrrr. To quote Arnold: We’ll be baaaack! (End of January into March!). It’s going to be a shocker in the meantime. I have to wear long pants again and find my shoes!! And socks! 😂

Hi Lori-

Always great to hear from you! Would have loved to connect in FL...maybe next trip!

So news here...just the facts! My partner contracted Epstein Barr Virus a few weeks ago which accelerated and then seemed to disappear. His blood work is all over the charts...out of range RBC, WBC, ABN etc. Platelets are OK. They gave him an infusion of Rituximab last Monday for Epstein Barr and I'm not sure if they will continue as the virus appears to now be undetected!
His chimerism was at 75% in the second number (T cells) and 100% for 1,3 and 4. They have reduced the Tacro, which is now at a normal level, 7, thinking that may solve the problem.
He just had a BMB and we are waiting for the cytogenetics.

That's the story at the moment. Wishing you a wonderful holiday season!

Many thanks always for just being you!
Always be kind to yourself. You deserve it!

Warm regards,

Lorraine