MDS/AML at a young age

[Hopez2]

My husband was diagnosed with MDS in Feb. and then with AML in June. He has 3 cytogenetics with one of them being q3 which is paired with a poorer prognosis. He is 32 yrs old. They have found a donor who is a 9 out of 10 match. His bone marrow transplant is scheduled for next Tues, the 31st. I searched for a forum because my friends and family, although very supportive, have no real idea of what we are going through. The constant guess as to what the next day is going to bring is grueling. He was very sick after his first round of chemo and then ended up getting a stomache virus. It has been a rough road and I thought that maybe if someone was in a similar situation or just had some words of wisdom, it would help.

For now, I just keep psitive thoughts in my head and try to remind my husband of all of the positive things he has in his life (just the donor alone is a Godsend).

Thanks to all in advance!

Hope

[Neil Cuadra]

Hope,

Your name says a lot. Your positive attitude will do a lot to help you in the weeks ahead. You and your husband have other things going for you too. First of all, congratulations on finding a donor. Second, younger people tend to do well with transplants. Most MDS and AML patients are in their 60s or older and more likely to have accumulated other health problems that complicate their treatment. A 32-year-old is more likely to be able to tolerate the treatment and recover faster.

I hope you are at an excellent treatment center and that it's close to home. Having family around (even if they don't fully understand AML or transplants) will be another advantage.

It's not surprising that your friends and family have a hard time understanding what you and your husband are going through. It's difficult enough to make sense of it for patients, let alone the other people in their lives. I've found that it helps to write down what's happened each day -- in email, a journal, a blog, or in a forum like this one. That lets you keep track yourself and also lets your "support team" keep up with news and learn to be supportive at their own pace. Sometimes people are so afraid of saying the wrong thing to a sick friend that they don't say anything at all. But they can listen, and from that learn how best to be understanding and really help you.

For what it's worth, we in this forum know what you are going through: the symptoms of the disease, the shock of diagnosis, the waiting and the tests, the medical jargon thrown at us, the effects of chemo, the "why me?" feeling, the fear of the unknown future, and the hope for a cure and a return to your normal lives.

AML is a life-threatening disease and we can't pretend otherwise, but doctors have learned a lot more about how best to care for patients undergoing transplants since the time my wife got her transplant for MDS in the 1990s. She wrote her transplant story here.

You are doing the right thing by seeking out people who can be supportive and who have been through what you are going through. I wish you the best of luck and I hope that you will remember to take care of yourself, not just your husband.

[Debbie W]

My husband just completed induction therapy, he was discharged yesterday, after his blast count moved to 20%. One of the nurses said that her uncle had a BMT when he was 32, that was 20 years, so there is hope

Look into setting up a Care Pages or Caring Bridge site for your husband, that way family and friends can be updated easily on what is taking place, more importantly they can be there to give support and encouragement to your husband and yourself, they vary slightly so look at both.

If you do not mind my asking, where is your husband being treated? We are also in NJ, but my husband is being treated at Sloan. We'll be there next Tuesday for a follow up BMB after induction and will also visit one of his old roommates who was readmitted the day my husband was discharged.

Use whatever resources you can to get through this difficult time.

Best to you and your husband,

Debbie

[Hopez2]

Thanks for all of your kind words and encouragement. My husband is at Fox Chase/Temple Hospital in Philadelphia. We thought about Sloan, but we love his doctor in Philly. I believe induction therapy is radiation, right? My husband doesn't have to have that - he just needs chemotherapy and then the transplant.
How old is your husband, Debbie?

[Debbie W]

Induction therapy is chemo, he had the 7+3 regimen, cytarabine and daunorubicin in an attempt to reduce the blasts to under 5% before transplant. Once the blasts are under 5% then we'll meet with the transplant team and set up a date. Having confidence in your doctor helps a great deal as does being close to family and friends for support.

My husband just turned 58 when he was diagnosed in May.

Best wishes next week,
Debbie

[Hopez2]

Debbie,
I read your story - some things sound very similar to my husband. My husband had the 7 + 3 chemo and now he is getting Fludarabine and Busulfex before transplant. My husband is feeling great now - like his normal self; it's hard to keep reminding myself what the next month is going to be like. I guess they found a donor for your husband? Do you have a projected transplant date? Is he feeling good now that it's a few weeks out of his induction therapy? They told my husband that he would feel pretty good, but then he got and infection and a virus, so he had a rough go. He only had a few good days before he had to go back in for his pre-transplant week.
If you don't mind me asking, what does your husband do for a living?

Princeton isn't too far from us - we are in Phillipsburg, NJ.

Best Wishes for you and your family,
Hope

[squirrellypoo]

Hi Hope.

You should have a look in the Transplants forum as there are three of us young'uns (myself, Laura, and tserdogan) who had our transplants last year. Having a 9 out of 10 match is a great asset, as is being so young! You should read through our stories to see how different our experiences have been, but at the same time, all three of us are still going strong over a year later.

I celebrated my one year transplant anniversary by running a 10k race for the Anthony Nolan Trust (the UK's bone marrow registry charity) and the nurses at my transplant hospital have been showing my race photo around to patients to show them that you really CAN have a healthy, normal life after a transplant. and believe me, before my transplant, I was mere weeks or months away from death.

Keep hope alive for him, make him laugh, and stay strong in yourself.

melissa

[Debbie W]

Did the 7 + 3 chemo bring his blasts down under 5% or did he need further chemo to do that? Glad your husband is going into this feeling great and I can imagine that the next month or so could be rough, hoping for the best. We will not meet with the transplant team until the blasts are under 5% so no date yet, he has two siblings that match, and once everything is lined up they'll want to move relatively quickly. My husband works for a small firm that writes business case studies for software/hardware upgrades. Most of the time he can work from home, but there are the initail visits to clients, for now the out of town visits are being handled by others. He has worked part time for the last couple of days with a nap in the afternoon, so he is very lucky in that respect. Yes, you are not to far away, we both have a choice of Philly or NY which is great.

Let us know how things go,
Debbie

[Hopez2]

Debbie,
The induction therapy did put my husbands leukemia in remission, but it took 3 weeks instead of the two that they were expecting it to take. However, the MDS was still present. The MDS and it's cytogenetics are the bigger picture for my husband. The fact that he has it at such a young age and how quickly he went from having 1 cytogenetic to 3+ shows how aggressive it is.
You are very fortunate that your husbands brothers are matches. Are his blasts still not below 5%? You had the 7+3 in the begining of Aug, right? Since they already have a donor will they move to transplant as soon as his blasts drop low enough?

[Hopez2]

Squirrelly,
I read your story and CONGRATS! You have come such a long way and that is truly a commendable feat. Also, your on your countdown to your wedding, so that is great! I'm sure your friends and family feel like they will have 2 reasons to celebrate on that day, so soak in every moment that you can. Wedding days are a whirlwind - take a moment at one point in the day to step back and take it all in.
I'll try to keep making my husband smile - right now I feel like his personal trainer. If I don't make him, he won't walk or exercise. Which I don't know why - it's got to be better than sitting in bed all day. I know some days he doesn't want to because he isn't feeling well, but even on the days he is feeling well he needs to be forced to do it. Thanks for all of your advice and if you have anymore of things that other people did that helped you get through things, I'll take all of the advice I can get!

Best Wishes for you and your fiance,
Hope

[Debbie W]

Thanks for the reply and we are hoping that the induction therapy worked. Since they do not do a follow up BMB until a week after discharge we are still waiting, appointment for BMB is scheduled for Tuesday and then hopefully we'll hear by the end of next week. But they did call yesterday to schedule an appointment with the transplant doctor on 9/16, so if everything is in order they want to move quickly. Thought they wanted to wait until the BMB results, but maybe it is different since it moved from MDS to AML??? Or always easier to cancel an appointment???

Hope your husband is still doing great. Read your post about the exercise, my husband found it helpful to break up his laps into four segments, 7 laps was a half mile. So he would exercise four times a day doing a half mile each time, this also helped to break up the day.

Best wishes,
Debbie

[Debbie W]

Best wishes to you and your husband tomorrow!

Warm regards,
Debbie

[Hopez2]

Debbie,
Thanks for the well wishes. The transplant went fine. It's pretty anti-climatic. Now we just wait....
Anyway, how did your husband make out? You got the results of his bmb yest. right?

[Debbie W]

You're welcome and I hope the waiting passes by without incidence.

BMB was yesterday and the nurse just called to say blasts are at 4% so we can move forward to the transplant phase. They are trying to get his appointment moved up from the 16th so hopefully we'll meet with the transplant doc next week. To say we are pleased is an understatement.

[Hopez2]

I actually breathed a sigh of relief for you. I know how stressful it can be awaiting those results. If you have any questions along the way, please ask as it seems we are about 2 weeks ahead of you with similar treatment. Good Luck with the next couple of weeks. Is your husband getting a marrow transplant or stem cell?

Nicole

[Debbie W]

Thanks, hope things are boring on your end I think I'll have more questions next week. They called this afternoon to schedule heart tests, pulmonary function, dental appointment for Tuesday and Wednesday and an appointment with the transplant doctor for Wednesday as well. We already had an appointment for Tuesday for a follow up CT scan of the chest. Things are beginning to move quicker so I better stop slacking off here at home. The oncologist had mentioned stem cells, she said they do not do bone marrow as often anymore. Is that what your husband is getting as well?

Best regards,
Debbie

[Hopez2]

We were told that with the marrow transplant, you get less graph versus host disease and with the stem-cells, they adapt to the body easier. My husband was supposed to get the marrow, but the donor could not be put under because of health reasons, so they had to take it from the peripheal blood.
I don't know if you have heard of "caring bridge" yet, but it's a website where you can post a journal of what someone is going through who is sick to keep friends and family informed on a daily basis. I just made one for my husband and it's so much easier than having to call or text everyone when his condition changes. People can also post little statements to him on there. Just wanted to pass it along to you because it has been a great help for us.

Enjoy your weekend - it's supposed to be beautiful

Nicole

[Debbie W]

We're looking forward to finding out more this week and I've heard the same thing about the marrow vs. stem cells. I believe that both of Mike's siblings should be able to donate either, but we'll see what they say. His siblings are now being tested for a virus called CMV as that may play a role in who they choose to be the donor. Yes I did set up a similar site to keep family and friends updated and thanks for that note.

Wishes for boring days ahead with slow and steady progress.

Debbie

[Hopez2]

Hey Debbie - just seeing if they set a date for your husband's transplant. Hope all is well.

[Debbie W]

Provided that yesterday's BMB is good then he will be admitted on Tuesday.

Please let us know how things are going for your husband and yourself.

Best wishes and positive thoughts,
Debbie

[Hopez2]

I don't understand what the biopsy would have anything to do with whether or not they gave him the transplant? Doesn't he have to get chemo before anyway to knock out his system?
My husband, Bobby, had a really rough week. His mouth sores became unbearable to the point where they have him on a morphine pump (he just hits the button when he wants it) and he can't even swallow his own saliva. He hasn't been able to swallow anything since last Tues. So now it's been a whole week with no food. Apparently some people get it even worse. I had been cooking him meals at home, freezing them and bringing them down to him as the smell of the hospital food intensified his nausea and he had been eating pretty good before the sores got bad. He actually tried packing on some weight before transplant because he knew he would lose a lot. On a good note, his blood counts are on the rise and he is not nuetrapenic anymore so his body should start fighting off the mouth/throat sores on their own.
Just a little thing that someone else suggested to us and I will pass on to you is to bring pillow cases from home. It's something so minute, but Bobby loves it - it smells like home and they are softer than the hospital bedding.

Enjoy this next week with your husband - unfortunately, the road will get harder.

[Neil Cuadra]

Hope,

Bobby's mouth sores will lessen as his neutropenia lessens. That's exactly what happened to my wife: mouth sores, inability to swallow, morphine, then recovery. She went weeks without taking food by mouth, but her nutrition was supplied by IV.

I hope his white count rises back to normal and you never look back.

[Debbie W]

It seems different centers have different ways of doing things, if the blasts had increased too much then they probably would have made him go through some additional chemo prior to the transplant chemo. When I asked the doctor about this last month she said they would like the blasts under 5%, not necessarily a hard number. If it was 6 or 7 they would just go to transplant. Ideally she said they want to get the blasts down, give your body time to gain some strength and have your counts come up a bit before they hit you with another dose of chemo. We went through the same thing with the BMB after the initial induction therapy, some centers and doctors do a BMB after 14 days. In my husband's case they wanted to wait until the marrow had "settled down" and give the drugs time to work, so they did not do a BMB until a week after discharge.

I'm sorry that your husband is having these mouth sores, I hope that since his counts are trending up this will be short lived and improve each day. Thanks for the tip about the pillow cases, my sister brought a neck pillow that my husband loved. It was a smaller circumfrence, maybe 4-5 inches, unfortunately it got left behind. I think we have a good replacement.

Thanks and we'll try to enjoy the next few days, how are you holding up?

Speedy recovery,
Debbie

[Hopez2]

You have been in my thoughts - did your husband get his transplant yet? How have things been on your end?
Things here have been a little rough. My husband, Bob, was told 2 weeks ago that he could go home if he ate and walked as his blood counts came up rather quickly, however he has done little of both. Tomorrow will be 3 weeks since he has had a full meal. He started with mouth sores and as they got better, he became increasingly nauseous. It seemed as if he would vomit after eating. They thought maybe graft versus host disease of upper gi tract, but prelim results showed nothing. We will get final results today. It could possibly be psycho-sematic. I've been told by one of the Dr.'s that this is often harder on their younger patients than the older ones mentally. I guess you just aren't prepared to face a life-threatening illness at a young age.
I hope things are going as well as possible for you and your family.

Nicole

[Debbie W]

Transplant was this afternoon and he has been doing OK. A few days of nausea and not eating, but that is coming back slowly. No full meals yet, but just eating something is good.

Hopefully things have improved since your message, please let us know how things are going lately .... eating, walking???

Sending good thoughts to both of you,
Debbie