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Acute Myeloid Leukemia with Aberrant CD7
Blood Cancers & Disorders | Last Active: Dec 22, 2021 | Replies (41)Comment receiving replies
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
Replies to "Hi dear sweet Lori... You continue to blow me away with how much you know and..."
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.
Connect
It’s so good to hear from you! And never worry about overwhelming me. I’m small but mighty. LOL.
Ok first thing.
To find our thread easily: Clinic on the little round circle with your photo next to your name.
It will drop down a menu that says:
Profile & settings
Notifications
Messages
Help Center
Now, click on Profile & Settings.
That takes you to your bio page.
On the left side you’ll see:
Discussions
Comments
Likes
Bookmarks
Click comments and you’ll have a list of every comment you’ve made on Connect. By touching a comment, it will return you to the place where the reply was posted.
Once you’ve found your link, as an example, the one I’m typing in. Look on the lower right bottom of the comment. You’ll see 3 dots. …
click that and a menu will say, Copy link to Clipboard, Bookmark, Report
By clicking on Bookmark, you can then easily return to that posting by accessing your profile and settings again and click on Bookmarks!
I know that’s detailed but hopefully it helps you.
Plus our chats are in order from oldest to newest. At the very top of this entire discussion, there is a little area in the top that says oldest to newest. By touching that you can change the comments from newest to oldest.
Just as a refresher… https://connect.mayoclinic.org/get-started-on-connect/
You can easily just highlight and copy the conversations and paste them in a word program to print out. ☺️
The rest of my answers will be in a new reply box! Back in a bit.