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Sat, Jul 25 4:32pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

Brad – until two weeks ago (and because I am taking a weekly injection) I hadn’t been above 10.0 HGB for two years. Usually staying in the high seven-low eight range. I’ve been incredibly active and productive. After a SCT – it seems that there are so many moving parts – nothing is simple. My oncologist told me recently that you want a great hematology oncology doc for after transplant – everything before is fairly text book but all of our bodies respond in different ways after. “New normal” is a term that gets overused in some ways but it can be helpful to think in those terms. It’s a process and a discovery.

Fri, Jul 24 5:50pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

Brad- it’s tough to say because everyone experience is different. I dealt with severe GVHD in the first 60 and had a very rough go. And then the emotional/mental part isn’t easy. How did it feel? To give my experience – very tiring. Not a lot of strength or stamina. There were days when I didn’t want to take a shower or do just the basic walking 100 yards but most days I forced myself to do it. My wife met me where I was which I’m sure took restraint sometimes because she is a nurse. As a transplant patient – you want to get back to normal but you also don’t have as much ability to access the “want.” They say that fatigue makes cowards of us all & I think it’s because when you are so fatigued it Zappa your desire. Does it help to ask home you can best support your wife? And then just do that? You may have more “want” and desire than her right now and to you might be careful to make sure that doesn’t overwhelm her. Baby step are ok.

Sat, Jul 11 8:04am · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

Brad- what strikes me significantly is the she has you. What a gift. I know that you said you are asking all of this for her and not yourself and I can appreciate that deeply. And … as others have shared, please do take care of yourself. It seems you are doing that well.

I can remember days when I had so little energy and just wanted to lay in bed each day. Making a few small goals each day was really helpful. Sometimes – taking a shower was on the list! And then perhaps just walking to the end of the block. Another thing I found helpful was to ask myself each day, “what do you want?” Any answer was ok – I just needed to make sure I was living from a deeper place and being honest about what I was feeling. Sometimes there can be a conflict between what I really desire and what I am actually doing each day.

Fri, Jul 10 8:55pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

I just saw what another person posted as well. It is tough to walk through all of this and grieving is an important thing. It’s okay and an expected part of this. Another element that I’ve processed a bit is PTSD – there are often unexpected thoughts and desires that can come up. I don’t want to give “advice” per second but I can share what’s helped along the way. The integration of all the things we experience and feel is vital. I have found that writing out my story has been very therapeutic as well as staying connected relationally. Often people (people I love) haven’t known what to do so I tell them what I need: will you visit me? Can we FaceTime? That takes a little extra energy but I found that rather than being upset that people weren’t doing certain things – I would let them know. Everyone responded well. People often just don’t know how to help and might stay away for fear of saying the wrong thing.

Fri, Jul 10 5:06pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

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.

Fri, Jul 10 4:56pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

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.

Fri, Jul 10 4:49pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

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.

Fri, Jul 10 1:40pm · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

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.