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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori
What diagnosis brought you to a BMT?
How has it impacted your life and that of your caregiver?
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Hello @tml From experience, looking at blood numbers can really ramp up the anxiety. I can’t tell you how many times I’d look at my numbers, ( I do know what they mean) and I’d still be a little freaked out. Then my doctor would wave his hand and say ‘That’s a non-issue. Those numbers are fine considering the medication you’re on. They’ll reverse. “
Especially when we’re going through treatments, the chemistry of our bodies can be affected by the medications with large fluctuations in numbers. Some numbers such as LDH can become elevated either with tissue damage occurring OR simply showing the aftermath of cell damage which could even be cancer cells being flushed out. I’m not saying that’s what’s happening in your case. Just letting you know a scenario that, when taken out of context, you won’t understand the numbers.
Anyway, it’s not unusual when you’re on strong medications, and certainly if your system is being flushed, to have all your blood numbers skewed. I’m not sure how meaningful any of that would be at this point. Doctors will want a CBC to make sure your liver and kidneys are functioning and not taking a hit.
It’s in your best interest to not be giving yourself even more anxiety over these numbers. Remember you weren’t going to look! ☺️
Are you still feeling fairly well during treatment?
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3 Reactions@tml I echo what @loribmt and @rosemarya have already said to you. I get labwork every month at the cancer center, and actually have made a spreadsheet to look at my results side-by-side. They are numbers on a page. The dr is the one who ties them all together as it relates to my medication and well-being. Like Lori, I do know what the numbers mean, but there are nuances that can make things vary. Focus instead on how you feel. You promised yourself to not dwell on the numbers, and you are waiting for the results of the tests as it relates to your multiple myeloma!
What have you found today to be joyful and grateful for?
Ginger
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3 ReactionsHi Lori, Just wanted to update re: husband's upcoming BMT. He is scheduled for a splenectomy in 2 weeks as the Jakafi has not continued to shrink his spleen as hoped. We are hoping this is a successful surgery with minimal complications. After recovery, the BMT is scheduled to occur probably in July. Luckily I found a small 2 bedroom house, reasonably priced, to rent near the clinic with a fenced in yard for our dog. I know that you had offered to provide a list of items that would be helpful for this move. Any other tips or suggestions? Thank you!
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2 ReactionsGood morning! Well, gosh, that’s not the news you wanted with the Jakafi not doing the job. But plan B should get your husband to the point of transplant. ☺️
I’m so happy to hear you found such a nice place to live near the clinic where you can bring your furry baby along! That has to be a huge relief for you. I’m trying to think of other things you might need. My stay was at a hotel so there were a number of extra things I brought along that you won’t need if you have a house.
We drove to Rochester so we weren’t limited with room. Not sure if you’re flying or driving but that might impact what you arrive with.
I’m assuming all the basic amenities are in the house already such as utensils, plates, etc. but bring items that you use on a daily or weekly basis that you won’t have in Rochester at your reach.
Rochester is a nice medium sized city with a lot of grocery stores, restaurants, etc. with delivery!!
So make a list of what you might miss if you’re not home for 3-4 months. Pills for sure, address book, stamps, envelopes, laptops, iPad, phones, chargers, extra prescription glasses. I also tossed in a small extension cord for my hospital stay so I could charge my phone and iPad in my bed.
Bedroom slippers for your husband and pajamas/sweat pants. Something comfortable…trust me. And his own little blanket/throw.
Forward your mail from the post office and sign up for the free service from USPS for previewing your mail so you can see what is being delivered each day if you need to check for bills.
We brought along some favorite food prep knives, some dried herbs/spices from our home so we didn’t have to buy everything new. But there’s a really nice HY-Vee grocery not far from the clinic where you can get everything you need and Fresh Thyme that has really good fish and fresh foods.
You’ll be there from July into the early/later autumn so keep that in mind when packing clothing. Summer is hot and humid in Rochester and then gets chilly in the fall. Raincoats/jackets/caps/hats for trips back and forth to the clinic on nasty days.
If you drive to the clinic daily, you’ll be able to duck into a tunnel system from most parking ramps so that’s out of the elements.
Getting to the nitty gritty. Your husband will be seriously immuno-compromised after the transplant and will need to be in as clean of an environment as possible.
He will have several educational classes before transplant to help guide you both about foods to eat, food prep and handling, and also a safe living environment.
He’ll be wearing a mask all the time for several months! With a dog, he may have to limit petting. But keep sanitizer handy.
When you move in:
Bring sanitizing wipes and hand sanitizer to get you started, then make sure they’re on your shopping list.
What I would suggest, even though the house will no doubt been cleaned, is to disinfect all the horizontal surfaces again, such as doorknobs, remotes, light switches, countertops, refrigerator and microwave door handles, bathroom…
Take all the dishes from the cabinets and put through the dishwasher again so that you know it’s been done.
I brought a supply of our own dish cloths and towels from home. I’m really picky and felt I had a level of control of cleanliness. I also brought our own facial wash cloths.
A suggestion to bring a Brita water pitcher/filters. Rochester’s water is fine, just heavily chlorinated and I didn’t like the taste.
Is this a 1 or 2 bathroom house? If you’re sharing (or not) the bathroom with your husband during his recovery, it needs to be squeaky clean. And he should not be cleaning it at this time. It’s good to purchase a new toilet brush and Clorox bowl cleaner and keep the Lysol wipes handy for touch ups.
Molds and fungus are problematic for newly transplanted patients so make sure the shower curtain is free of mold.
I know I tossed a lot at you on general information.
Do you have any specific questions?
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3 ReactionsHi Lori,
Thank you for this information. Very helpful! It is a 1 bathroom home. I could request a new shower curtain or bring our own. Good point! I'll reach out if I think of other questions. So much to think about! You take care and have a nice weekend.
I would add in, to run the vacuum again, when you get there. If there are curtains on the windows, ask if they can be steam cleaned or at least pulled down and shaken out. Ditto for furniture, can it be vacuumed? If the landlords have rented to Mayo patients before, they may already be aware of having to be "squeaky clean"!
Ginger
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3 ReactionsHi Ginger,
Thank you! I will check with property owner regarding those items. I would’ve never thought of that.
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1 ReactionGood morning. I know there’s a lot of information being tossed your way in preparation for your upcoming stay in Rochester. My husband and I went through the same thing. The logistics seemed a bit daunting. But it all works out. ☺️ Now, it’s our home away from home and we’re always eager to return for follow up appointments. It’s like coming home!
@gingerw brought brought up more points, such as the airing of the drapes and vacuuming again. Just make sure your husband is not in the same room when you’re doing that and that he is fully masked.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplantThe mindset for you and your husband during transplant recovery has to be, in a word, Germaphobic. His immune system will be very compromised so he’ll need to avoid exposure to dusts, dirt, plants, soil etc.
I wanted to add, cover the sofa or wherever he’ll be sitting with a clean sheet. You don’t know who’s been on that sofa before or what illness they had.
Again, I’m not trying to overwhelm you, just getting you prepared for a little life change for a while.
When I had extended visits to the clinic, my husband would take that opportunity to spray the fabric furniture and drapes in our hotel apartment with Lysol spray.
I’m sure others will add some ideas here for you too. Just jot them down.
You’ll be getting guidance from his transplant team as well. In the meantime, I found a very comprehensive post-transplant guideline from another reputable clinic.
These are very similar to my Mayo guideline pamphlet so this will give you a heads up.
How’s your husband feeling about all of this?
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7 ReactionsHi Lori, I am reading here now. Sara
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1 ReactionSince diagnosed 30 years ago, I’ve had 2 autos and 2 allos at Seidman Cancer Center of University Hospitals of Cleveland, with 2nd opinions at Mayo for 2. I posted my fourth short YouTube episode in a series of 4-5 minute videos of our strategies and lessons learned. SCTs will be in an upcoming episode. Our top lesson learned is to do homework on your transplant hospital. One size does not fit all. SCTs a a good tool, and there are now many others.
https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg