Mayo Clinic Connect
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.
Liked by tedwueste
Stem cell transplant on June 9, released from hospital July 1. Back at home now but she’s not great but may be part of recovery process. Never done this before.
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Brad, the first couple of months are not a walk on the beach by any means. I’m sure your wife is dealing with some nausea, maybe some mouth sores, unpredictable body functions, still not hungry, food doesn’t taste like anything… Please let her know and be assured yourself, that this is all part of the process. It does get better over the next few months. Make sure she stays in touch with her team to report any changes or just discuss any concerns. They are your best advocates! Also, daily temperature checks are crucial. Please don’t hesitate to reach out to this forum as well or private message me is fine too.
As for hair loss, that was from the chemo to prepare for the transplant. It will take a while, but that will come back too! This is an amazing journey she’s on. Certainly not easy but it is worth it!! A year ago I was in the same place time-wise with my transplant. It’s just incredible how resilient and strong the human body is. I feel great, as though nothing has ever happened. But I can assure you at the time, I could not have imagined that. I hope this gives you and your wife some hope. There IS a future. All the best! Stay strong, stay postive… you’ve got this!!
Liked by Colleen Young, Connect Director, Ginger, Volunteer Mentor, Bob
Thanks for asking! 🙂
Lost her hair right before she got out.
Unfortunately that’s a pretty common side effect to the chemo. Good news is that it grows back. Lots of cute hats, scarves in the meantime if her head gets cold. If you need suggestions I have great resources for those.
Liked by Colleen Young, Connect Director
Thank you! The "unpredictable body functions" rings very true. Lately, she's gone from constipation to diarrhea and back. I bought lower strength Colace (50 mg) so maybe things will smooth out. No nausea although she's got three meds for that so looks like it's expected. I assumed the problem with her gut was why she was not eating much but you're saying it's just par for the course. I think it's important for her to eat so I've been buying her favorite gelato for months just to get calories in her. At least she didn't lose weight in the hospital like they were worried about. We know it's a marathon, not a sprint, but it's still hard at the moment.
Due to the virus, I can't go in to her appointments like I've done for the past 14 years and I've alway been the vocal advocate who gets the feedback we need. Not any longer and she's struggling with her memory I'm assuming just from the stress. Anyway, yes that was awesome feedback and I really appreciate it! Today I've been sitting in my vehicle for 5 1/2 hours in what is now over 90 degree heat while she gets transfusions inside. We didn't know and I guess you never do know what's going to happen until the blood work comes back. At least I brought my laptop and can get wifi here in the parking lot.
Liked by Ginger, Volunteer Mentor, Bob
Brad, that’s really unfortunate you can’t be with your wife for her treatments and appointments right now, for clarity and for her moral support! Her memory issues might have to do with a little chemo-fog…it’s a real thing, along with her stress. Does she have a patient portal for information from her transplant team? If so, all her notes should be available through that source. If you personally have questions, you can contact her team directly, or, send a note sheet along with her to appointments so your concerns can be addressed. They would make it a point to contact and update you, as you are your wife’s care giver, with pertinent information. You should’t be feeling so in the dark. You are a vital member of your wife’s survival team!
Gut problems are quite normal through the first couple months. The anti nausea meds, while a godsend, also play a big role in the disruption of normal bowel activities and health. The sooner she can get off those, the better. Have you ok’d the Colace with your wife’s doctor or pharmacist on her BMT-team? There are products which can interfere with the meds she’s on. One thing that helped me immeasurably and was approved by my team was eating yogurt mixed with 1 or 2 teaspoons of ground flax mixed into it daily. It helped restore the normal flora destroyed by the chemo and all the antibiotics. Also to drink at least 48 to 60 oz of water daily to keep the body properly hydrated and to flush the toxins. Getting calories into your wife is also important especially if she’s not been eating much. I lost 30 pounds last year, so i know! Fortunately i had gained back 10 in time for the transplant…and ended up losing that and more. Not a weight loss plan I’d recommend. LOL.
I really can’t stress the interaction of the BMT-team enough. They are the first source to ask if you have any concerns! They run the show right now and need to know every little detail big or small! But don’t hesitate to keep reaching out here. We’ve got your back. Wish your wife well! And good luck to you…hope you don’t have any more 5.5 hour waits in the car on such a hot day!! All the best!
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.
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?
Liked by Ginger, Volunteer Mentor
@tedwueste, Since you are a new member on Connect, I would like to help you to get started some tips on how to be a contributing member of a community that works — a safe space where members support one another and together we help improve our health and well-being.
Tips for Participating in an Online Community
I am a liver and kidney transplant recipient, and I look forward to learning more about stem cell transplant from your viewpoint.
Liked by Rosemary, Volunteer Mentor, jolinda, Ginger, Volunteer Mentor
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?
Liked by Ginger, Volunteer Mentor, tedwueste
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?
Liked by Colleen Young, Connect Director, Ginger, Volunteer Mentor
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
Liked by Colleen Young, Connect Director, tedwueste
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!
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.
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.
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.
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