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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 Friends – I had an allo stem cell transplant in April 2019. I am still on the road to recovery and also feeling better than I’ve felt in years. Dealing with Hodgkins Lymphoma and then Acute Myeloid Leukemia, the transplant itself went well but I also have dealt with chronic graft versus host disease of the gut and mouth. I developed several other problems as side effects of treatment such as some heart damage and blood clots. If I can be an encouragement to anyone, I’m here. While I am still dealing with some of these things as well as what we think is medication related anemia, I am in a good place. Send me a message and I’d love to dialogue. I would love to help others in any way I can.
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Hi Ted and welcome to Connect. You’ll find this a really great outlet for shared stories from people who have walked the walk. We’re very supportive, understanding an empathetic. I recently celebrated my first year transplant birthday June 2019 so we’re not that far apart. That was about 4.5 months after my diagnosis and treatment of AML. I’ve had some issues with GVHD but not the heart damage and any blood clots. Though I do believe a lot of our recovery and what we experience can be related to what our body’s were like before we had the transplants; preexisting conditions. I’m so happy that you survived the Hopkins lymphoma! But a nasty surprise with the AML! But, better living through chemistry, huh. ☺️ The chemo for both AML and transplant can be rough. Especially that week before transplant with what we jokingly referred to the “mother of all chemos’. LOL. But you’re right, it is amazing on the other side! Staying positive, having a great sense of humor and sense of adventure keep us going daily! After all, how many of us can say we have 2 sets of DNA, switched blood types and are little Frankenstein’s monsters. Hehe. Sounds like a plot for a great book! Stay strong!! Lori
Loribmt, I pm'ed you as you suggested! 🙂
My wife will get test probably Monday for the percent of her blood is hers or her donors. I guess that shows how well the donation grafted…?
Hi Brad, I just sent you a message PM. I sent a lengthy reply the other day too. Did you receive it? It was in answer to your private message the other day! Sounds like your wife will be getting a chimerism test. This is essential to find out the percentage of her blood vs donor. At this point she should be showing 100% donor blood and 0 %host. And also it will show 100%Donor DNA and 0% host. At some point soon she’ll most like have another bone marrow biopsy. Usually around 30 days after the transplant. Let me know if you haven’t received my replies on our PM. You should have two from me now. I just sent one about 10 minutes ago. You’ve been on my mind and wanted to check in on both of you. I had an idea about some mindfulness methods which might help some morale issues. Take care!
Hi @tedwueste, I'd like to add my welcome. You'll notice that I moved your message to the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) to this discussion about stem cell transplant for AML. I think @bradmm will appreciate hearing your experience. Here you'll also meet @loribmt @lakegirl409 @kjjjrader and others.
Ted, can you talk more about the heart damage and blood clots? How are those being managed?
I experienced some damage to my heart from ABVD chemo for Hodgkins and the the chemo I did for AML caused problems as well. My ejection fraction went down significantly and I ended up in the ICU with heart failure while in-patient for chemo. I am taking a couple of blood pressure meds daily and checking my blood pressure twice each day.
The blood clots were a surprise – my port clotted and they had to remove it soon after admitted for AML chemotherapy. I clotted a couple of other times and was able to manage with a shot twice each day and then eliquis. I went off the eliquis three months after my last line was taken out in nov. Then, a few weeks later – I developed deep clots in my arm. Now, I’m back on blood thinners and likely will be for the rest of my life. I’d never had any clotting issues previously but the docs think I may have a genetic condition that was triggered by all the ports and lines I’ve had over the last three years. Still a bit of mystery.
Ted, my wife had her allo stem cell transplant on June 9 after chemo for AML. Previously diagnosed with MDS and CLL. She was released from the hospital on July 1 and is now at home. She's having lots of trouble with the emotional end of this and goes up and down everyday. When you saying that you're feeling better than you've felt in years, do you mean physically? I don't think my wife ever felt bad physically other than a little fatigue but was going to the gym 4 times a week back in January before her AML diagnosis that put her in the hospital for the first time this year. BTW, where are you located, what hospital did you transplant?
When I said I was feeling better, I meant physically but I am also doing well emotionally. For me, I was a marathon runner and in great shape before all of this started 3 years ago. Now – my body is a mess even I fell like I’m getting better. My experience with marathon running has helped because all of this treatment is like running a marathon. It’s not a quick sprint to feeling better but a long haul. My emotions have been all over the place – especially before, during, and after transplant. For me – contemplative, meditative prayer has helped me allow my emotions to be present but interact with them the way I’ve interacted with my body feeling like crap. They are there but it’s all a part of the process.
I live in Phx and my treatment has been at the Mayo hospital here.
Hi @tedwueste, and welcome to the Mayo Clinic Transplant group. I am happy that you have joined because this is the place where you can meet and interact with others who have questions and experiences to share about stem cell transplants.
I want to commend you on your desire to share and support others. To get started, would you tell us a little about yourself and the process that leads up a stem cell transplant?
Well, a little more background. I am 50 years old. Married to my wife of 28 years who is a nurse at Mayo. Two adult children – 18 and 20. They were 17 and 14 when I was diagnosed. Had to miss a lot of my sons senior year of high school and all that entails.
In Oct 2017, I was diagnosed with Hodgkins Lymphoma. We thought it was fine after 12 rounds of chemo but about 6 weeks later it was back. More chemo leading to an auto stem cell transplant. The transplant failed because my stem cells were no good. After trying to extract, it was discovered that it had failed because I had developed AML – likely related to my previous chemo treatments. Was admitted immediately and went through the hardest chemo I’d experienced. Blood clots, heart issues, on oxygen, my GI tract was a mess.
I made it to transplant and all of that went well in comparison but had to be hospitalized two more times for a severe case of gvhd. Was finally sent home and had to receive liquid nutrition for about a month because my gut couldn’t tolerate any food.
This led to 6 months of photophoresis to deal with the gvhd. Was also hospitalized again during this time for double pneumonia related to getting legionnaires disease.
Wow! With all that you are going through physically I admire your positive attitude and courage. Bravo my friend. Keep on keeping on.!
@tedwueste You brightened my day with your fighting spirit.
I have looked periodically and looked again now and still don't see any PM's from you. Maybe I'm not doing something right.
As far as mindfulness, I bought her a book when she was in the hospital and have tried to get her to try to meditate for many years… no luck. I don't know but she's an accountant so maybe her brain can't work that way. 🙂
Ted, you have certainly been though hell so we know where you're going at the end of life! 🙂 Actually, it appears that there's no way that stem cell transplant patients can AVOID HELL! Just from what I've observed, read and been told, this is unavoidably grueling!
BTW, our son did his residency at the Mayo in Jacksonville, FLA. The Mayo is certainly a great asset to have nearby!
I went back and looked and I don't think I've said all this here but there is an eventual point so be patient. 🙂 My wife was first diagnosed with CLL in 2006 and got chemo in 2009/2010 resulting in remission. She was diagnosed with MDS in 2013 and treatment as manageable for about 6 years with injections about every three weeks. In 2019, her blood work got to the point where I was taking her in weekly for injections and sometimes transfusions. She hadn't had a bone marrow biopsy since 2013 so we went to MD Anderson (Houston) for a biopsy (because we knew from experience that they are very good at it) and we wanted to see if there was something to address the MDS vs just continued treatment with no improvement. That's when we got the AML diagnosis and we spent the next two months there while she was getting chemo and otherwise being treated. I was able to move her closer to home for the transplant.
MY QUESTION IS, I've been a caregiver for 14 years with increasingly more difficulty of hoping to make any difference aside from just taking care of logistics. For those of you who have had the transplant, what did you want most from your caregiver(s)? I'm sitting out in the parking lot now for 6-7 hours in 100+ degree weather while she's inside being treated and doing all the other stuff to keep things held together but, in the end, I don't seem to be able to help her cope.
Brad, gosh I’m so sorry she’s having such a difficult time coping. It’s customary for a transplant team to have spiritual and mental health advisor. Someone who will help mentor her and provide some coping skills, counseling and help provide her with some mindfulness exercises. Does she have a patient portal for her BMT-team at her transplant center. Seriously, I would be in contact with them to help YOU and your wife. They can also give YOU ideas on how to cope.
Also, I’m not sure where her cells came from, meaning the cell procurement center but Be The Match foundation has excellent counselors. Just go to their website..google Be The Match and you can access all kinds of information.
Your wife has been through a great deal. Just going through the treatment from AML is challenging enough. Her body now is trying to heal from the intense chemo pre-transplant and all the new medications being pumped into her system to help her through this next phase. It is mentally and physically challenging.
There is the grieving process which takes place…for her old, predictable life. She’s is overwhelmed right now that she can’t see a future. I promise you and her, there is a future! It’s well worth the effort of fighting this challenge.
I see in another post you said BMT patients go through hell. Well, that is an interesting observation. As I said it is quite a challenge and not for the feint of heart. Perhaps that’s why anyone with a BMT is so euphoric, appreciates every moment and feels stronger and more confident when we have passed the difficult phase. The first month is the roughest and into the second things start to mellow out gradually.
It is one heck of a journey but we get the opportunity to live our second great life! Please don’t give up hope. As her caregiver, just remain stoic, a good listener, be patient. And please take care of yourself too. I know you feel helpless. My husband did too. He’s always been a man of science and engineering. Problems can be fixed and have predictable outcomes. BMTs don’t. However most are very successful but it takes time for our bodies to adapt to a completely different DNA! if there are issues with GVHD along the way, her transplant doctor and team will jump to the rescue.
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