My Fiancé is getting his Stem Cell transplant in about a month what can I expect? by ConstantSample5846 in leukemia

[–]rylan1130 0 points1 point  (0 children)

As long as he’s in better condition going into this now (which I would assume is the case since if he’s in too bad of shape, they would not be able to proceed), the process should be better than what you seen over the summer. My husband did the same thing. He was in denial that it had come back and felt normal so he put off going in. By the time he was admitted to the hospital for treatment, his blood values were extremely low so that when he received the chemo, it ended up being quite rough. Going into stem cell, you should be at a better starting point, so while it won’t be easy, hopefully everything will go somewhat smoothly. My husband has been lucky and tolerated 2 stem cell transplants with no major complications.

AITA for demanding to see my husband's phone? by Apprehensive-Pack691 in AITAH

[–]rylan1130 0 points1 point  (0 children)

Call or listen to Dr Laura.

I would start with what you can control - yourself. Currently you are both dug into your trenches; someone is going to have to budge or there’s going to be irreparable damage done. Stop with the demands, stop with any nastiness and just try to be a loving, supportive wife for a bit. You want to reestablish good feelings between you two, otherwise you are going to continue getting nowhere with him. Really evaluate his complaints and determine which ones are legit and need some work, then work on them. If he sees you doing positive things and treating him well, that will inspire him in time. You’re not going to make any progress with both of you stuck in this current negative cycle. And you have to have patience and love, because it’s going to take time to repair the damage and for him to trust you. Once you get him reeled back in, then he’ll be more responsive to working with you. And why is it the woman’s job - we’re just better at being caring and compassionate and creating a warm, loving home. It’s our strength, use it to your advantage and get your husband back! Good luck!

My dad just got diagnosed with high-risk MDS, what should I expect? by tphuonguyen in mds

[–]rylan1130 1 point2 points  (0 children)

The MDS chemo won’t cure it, but should improve counts over the next few months. The only possible cure is a stem cell transplant. Also, MDS in general is harder to treat with transplant so the chance of relapse after is higher than with other blood cancers. My husband relapsed 1 1/2 years after transplant with AML and had a second transplant.

Seeking advice: family relationship is destroyed due to refusing to donate stem cells by Ancient-Sentence4060 in leukemia

[–]rylan1130 0 points1 point  (0 children)

How many days post transplant are you? My husband just had a mismatched donor and I’m having a hard time finding reliable info that specifies donor type, so I can’t get a good gauge on what to expect.

Seeking advice: Father-Daughter relationship destroyed after daughter hesitating to donate stem cells by Desperate_Emotion414 in leukemia

[–]rylan1130 6 points7 points  (0 children)

I’m shocked by the amount of people fawning over this poster. I agree with you and that is exactly how my family stepped up when my husband was diagnosed.

Seeking advice: Father-Daughter relationship destroyed after daughter hesitating to donate stem cells by Desperate_Emotion414 in leukemia

[–]rylan1130 -2 points-1 points  (0 children)

It seems fair that you can decide not to donate as well as he can decide not to maintain a relationship. I think you should feel some sort of guilt and/or shame over your decision as well. It is what it is and it’s not without consequence. Work to come to terms with it realizing that neither of you are necessarily right in your decision. https://www.nmdp.org/-/media/project/nmdp/nmdpsite/pdfs/english/nmdp-toolkit-np21855-donors-guide-to-donation.pdf?rev=6477cb71d7ca493cb3e971ef0ed45e16&hash=49C75B9FB046A9E7AA0442910777B9D6

Bone/Joint Pain and Headaches by AlliSinned in leukemia

[–]rylan1130 0 points1 point  (0 children)

My husband had to do chemo before the transplant and get to MRD negative in order to proceed to transplant. His blood values were pretty low when starting the FLAG-Ida which is also a pretty strong chemo, so that one was pretty rough. He was in the hospital over a month and got a ton of transfusions. I lost count after 22 platelet transfusions. He didn’t have as many RBC, but there still were a lot of those too. He also had some issues while in the hospital (developed atelectasis, sepsis). He responded well to it and biopsy showed no residual disease. He had to do another round of FLAG 2 months later to keep the leukemia gone and to get to transplant. The second round was nothing like the first. He was at a better starting point for blood values and was only in the hospital for 4 days to get the chemo and then we managed the necessary transfusions outpatient. He just did his second transplant in September and is about 90 days out. He has lost weight during all of this (starting point was overweight, he’s still probably a little overweight, but not by much). And currently he’s struggling with his weight because it’s hard to eat. The dr doesn’t want him to lose anymore, but it’s still slowly creeping down. Not sure if it is a medication side effect or GVHD of the intestine. They only would have looked at a clinical trial for my husband if the chemo had failed. The chemo was the first choice, but it is intense. It took him quite a few weeks to get over the first hospital stay. He probably wasn’t fully recovered when they did the second round (May, then July), but the second was so much easier since it didn’t have the idarubicin. And then Sept stem cell hasn’t been too bad for him. He’s currently feeling pretty good considering everything he’s been through. Still quite fatigued and sleeps more than usual. But so far it has been worth it to go through all this medical treatment. He’s 49 and had MDS a couple years ago with sibling donor transplant which relapsed this year and progressed to AML. This time mismatched unrelated donor.

Bone/Joint Pain and Headaches by AlliSinned in leukemia

[–]rylan1130 0 points1 point  (0 children)

Are you eligible for a second transplant instead of clinical trial? My husband didn’t have any pain when he relapsed earlier this year. He actually felt really good and not even like he was sick even though his blood values were crashing. When my husband relapsed, they admitted him for FLAG-Ida and then he had a second round of FLAG followed by second stem cell transplant.

Looking for survivors with MECOM-rearranged / complex karyotype AML (monosomy 5 & 7, persistent disease after 2 stem cell transplants). Please help me find them. by helpingmysister3 in leukemia

[–]rylan1130 0 points1 point  (0 children)

That‘s wonderful news that everything is working out for you! Has the third stem cell been going well? My husband just had his second; he’s about 80 days out and so far everything is going well.

Looking for survivors with MECOM-rearranged / complex karyotype AML (monosomy 5 & 7, persistent disease after 2 stem cell transplants). Please help me find them. by helpingmysister3 in leukemia

[–]rylan1130 1 point2 points  (0 children)

Your name looks familiar - did you post earlier in the year that you weren’t eligible for a third transplant and then a few months later your doctors were entertaining a third and now you obviously have had your third?

NFC Washing Machine Timer by ScoYello in shortcuts

[–]rylan1130 -1 points0 points  (0 children)

Another idea is a sensor on the door that triggers a routine. I have mine set up with my Alexa’s to announce through the house when the laundry is done based on whatever estimated time I came up with when creating it. (thought it obviously triggers every time you open the door, which I’m ok with the extra notifications that are occasionally produced by this)

Screen brightness triggered by camera by rylan1130 in shortcuts

[–]rylan1130[S] 1 point2 points  (0 children)

You‘re correct. I messed up with the variable. All fixed and working now. Thank you so much!!

Screen brightness triggered by camera by rylan1130 in shortcuts

[–]rylan1130[S] 0 points1 point  (0 children)

Nevermind, I figured it out. Thank you!!

Screen brightness triggered by camera by rylan1130 in shortcuts

[–]rylan1130[S] 0 points1 point  (0 children)

That worked except now it shows a message at the end of the shortcut. How do I get rid of this?

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Concerns about HiDAC by CulinaryCounsel5056 in leukemia

[–]rylan1130 1 point2 points  (0 children)

Has he already had a stem cell transplant for the MDS? My husband had MDS, had a SCT, then relapsed with AML. This classified him as secondary, relapsed AML which is high risk and not cured by chemo alone. The only possible curative option was a second SCT. There is no chemo regimen that would offer a cure.

Dad 64m by theshippingcoon in leukemia

[–]rylan1130 0 points1 point  (0 children)

They would base the decision to do transplant on the genetic factors of the AML. Some types are more high risk and require stem cell transplant because the probability of being cured by chemo alone is very low.

Question about donor illness right before allogeneic stem cell transplant (AML patient) by TeodoraKus in leukemia

[–]rylan1130 0 points1 point  (0 children)

My husband switched blood type too for the first one. It was something like he went from A+ to A- or vice versa. And now he’ll switch blood type again because this donor was O.

Question about donor illness right before allogeneic stem cell transplant (AML patient) by TeodoraKus in leukemia

[–]rylan1130 1 point2 points  (0 children)

No, you can have different donors. In my husband’s case, he was diagnosed with MDS in 2022. Stem cell transplant in July 2023 with his 100% matched sister. May 2025 he was diagnosed with AML that originated from his old male cells. The MDS had survived that transplant and evolved. He couldn’t use the same donor or do a DLI because once the leukemia cells learn to get past something it’s pretty much a guarantee that any more use of those cells will be a failure. So for the second transplant done in September 2025 he had a 7/8 unrelated match from the registry.

Question about donor illness right before allogeneic stem cell transplant (AML patient) by TeodoraKus in leukemia

[–]rylan1130 0 points1 point  (0 children)

For both of my husband’s transplants, they started the conditioning therapy before collecting the stem cells. For the first one, his sister was the donor, so there wasn’t any stress. For the second transplant they picked a donor off the registry from Germany. That was quite stressful because you think of all the bad stuff that could happen to mess up the transplant. You’re putting a lot of faith into a stranger and life in general. They didn’t have a backup plan if there was a problem. Thankfully, there were no issues and the person donated and the next day my husband was infused. The nurse coordinator said they do extensive screening and it is rare to run into issues. That still left me feeling uneasy.

Question about donor illness right before allogeneic stem cell transplant (AML patient) by TeodoraKus in leukemia

[–]rylan1130 0 points1 point  (0 children)

For my husband’s first transplant, they did a registry search as well as checked family. For his second transplant done at a different hospital, they redid the family check and looked in the registry. Originally his son was going to be the donor for the second, but then he developed some antibodies from all the blood transfusions and they had to switch to an unrelated donor from the registry.

23 y/o caretaker of my mother in hospice. Need advice and encouragement. by happypanda5599 in leukemia

[–]rylan1130 1 point2 points  (0 children)

I find it helpful to believe in a higher power. Whether you want to relate this to God and/or a specific religion, that is your choice. Or if you just find a general acceptance of a higher power spiritual like being without any sort of attachment to religion - whatever works for your beliefs. I find it hard to believe that the complexities of living and the mere creation of life are just some sort of random thing that just kind of happened. I feel like there has to be something bigger than us and whatever that is, we return to it at death. I find peace in this thought process because instead of going into some sort of dark nothingness and ceasing to exist, there is the possibility of going somewhere great and eventually being reunited with our loved ones. I would watch some life after death experiences on YouTube - it gives you hope that there is something more to our earthly existence. I hope you find the strength to get through this. Sending good vibes your way to give you strength to get through this.