BMT advice

[michael 1]

I am looking for advice for my father in law who had a transplant a year ago, he is 70, his blood numbers all look good, he still cannot eat much, very weak, he does not excersize much as he is depressed, he says food has no taste, he continues to lose weight.....any advice appreciated?

[bailie]

I am sorry for your father-in-laws situation. Has he had a bone marrow biopsy recently? If so, were there any signs of relapse? It is common to have lack of energy as well as other feelings that weren't present before the transplant. It is difficult mentally. The support of family and friends are very important. My (Day +456) appetite seems to be continually changing and tastes are a little different than pre-transplant. It could easily be the medications that he is taking at this time. What are his doctors suggesting?

[michael 1]

they just say walk more and you are doing great, he is so depressed

[DanL]

Perspective is important. I started off with the belief that BMT was a 3 year process, and I am glad that I held that belief, because it has been a challenge. I am rapidly approaching 2 years post-transplant (february 26th). the second year has been somewhat more difficult - i have been hospitalized a total of about 65 days this year versus none in year one. Most of the days were for observation, only a few required treatment, but the team of doctors is always cautious with transplant patients and infections that we get. I have had 3 bouts of cellulitis this year due to low white blood counts and diabetes related swelling of my feet. I have had a couple of bouts with klebsiella and a couple of random fevers. Eating has been a challenge in the sense that I love food and my taste has been off for the better part of the last two years - everything is either too salty or ridiculously bland - The only flavors that are consistent are chocolate and peanut butter - both things that prior to transplant i did not enjoy but like to consume now. I used to be able to eat just meat all the time - now I am a carb hound.....it is all about change and adapting to what I like now versus what I used to like. Eating to me is an essential part of recovery, so finding what you like is the key to recovery - it takes an open mind, can be depressing, but I prefer to see it as a culinary challenge - try to help your father in law go on an adventure - it may be horrible at times, and it may just lead to a good laugh - my children find it very amusing that I suddenly have a sweet tooth - it is also ironic given that I have drug-induced diabetes and have to monitor it on the other side - i prefer to laugh at calamity because i have a slightly dark sense of humor - some call this brave or strong = i just think it is funny. It all comes back to the childhood rhyme - if at first you don't succeed - try try again. There is so much good food available to us - there is something that he will like and the nutritional value is not always as important as the caloric intake or the high that you get from an enjoyable meal. That is my learning and advice.

[rar]

My transplant was 16 months ago and I have a few years on your FIL. I just posted my saga on the MDS forum. I went through loss of strength. Exercise is a big help in that area. You just have to be motivated. I do 45 minutes a day 7 days a week not because I enjoy it, but it is part of my long term survival. I had weight loss of 40 pounds. On my normal diet the weight went down even more. I started eating twice my normal diet and managed to put 30 of those pounds back on. The diet should be high protein. With experimenting you can find food that is tolerable. Some people find the SCT makes food taste different. I love chocolate, for about a year it tasted terrible and couldn't eat it. I find that I can eat food that before I didn't care for. The SCT can mess up a lot of things. My testosterone level recently was 31 with normal of 240 to 900. This would explain some of my weakness. Keep bugging the doctor until you get answers.

Ray

[GoodDay5150]

The recovery journey is diff for everyone acc to everything that I read concerning BMT. I have found that even moderate exercise makes a HUGE diff in how I feel and function. As an example, we had some heavy wet snow here ystrd, and I figured that is was a good idea to start work a few hrs late. I had to shovel out the snow at some point so I did that before I went to work. I got a bit sweaty, but when I got through I realized how much better I felt after doing that than I did before I shoveled. My experience is and recovery has not been that bad; I am almost 4 yrs post trans for PNH, but I still struggle with some fatigue and some skin GVHD. I wld suggest that your father in law maybe join a support group, do some online research, and get reg exercise. We all wish him luck.

[michael 1]

he is off to the doctor Tuesday,,,,it seems he has given up,,,,,he does not eat much, sits in his recliner most of day,,,,maybe doctor can jumpstart his moral.

[traceyn11]

So sorry Michael. I hope the dr. can help him too.

[PaulS]

Hi Michael - I'm sorry for your father in law's and your struggles. I'm sure his depression is difficult for him - as well as you and your wife. Its great is numbers are good - and it sounds like the depression is maybe secondary to the transplant. Perhaps he could see a social worker or psychiatrist/psychologist for an evaluation? A support group might be even better - the transplant center probably can help him find some kind of support - where I am a social worker is part of the team - and there are support groups for both care givers and patients. If he's religious, finding/renewing a spiritual connection may help.Maybe he can connect with someone on this forum - Eating and exercise are obviously good things to do , but often very difficult for someone who is depressed - even without cancer or a SCT. The support of his family is also obviously very important - and may also be difficult for him to accept.

I've had some very low moments throughout this process and I can understand a tendency to withdraw into a dark space of hopelessness and despair - its not a good place and can be hard to get out of - but at 70 with good numbers it sounds like your father in law has reason to hope and a family who loves him - he just has to see that.

Medically maybe they need to check his medication for something that could be causing or exacerbating an pre-existing depression - or maybe even adding an anti depressant - but I'd encourage you/him to talk to not just the oncologist/transplant doctors - but also a skill mental health practitioner that is hopefully part of the transplant team.

Good luck and best wishes,
Paul

[riccd2001]

This works well for me; taking it at 10mg per day for almost eight years. Keeps my spirits up and that's important for us folks in our 70s.

[michael 1]

Originally Posted by riccd2001

This works well for me; taking it at 10mg per day for almost eight years. Keeps my spirits up and that's important for us folks in our 70s.

will ask about that one,, he is admitted to hospital, they installed a feeding tube to get his strength back since he wont eat, down to 134 pounds. They have found nothing medically wrong with him, and have physchologist talking to him also,,,,

[michael 1]

Has developed pneumonia and lung infection,,,,,,

[Neil Cuadra]

Michael,

Those are tough to fight even in the best of times.

Has a social worker been around to offer any advice about how to help your father-in-law, and the rest of your family, deal with this?

[michael 1]

antibiotics and steroids, not expected to survive

[traceyn11]

So sorry to hear this Michael. I will be praying for your family during this difficult time.

[Annettec]

So very sorry, wishing you peace and comfort during this difficult time....horrible disease.....

[PaulS]

I'm sorry you are going through this difficult time. I lost both parents after long illnesses and varying degrees of their suffering. At some point continued treatment doesn't make the patient better - just prolongs the inevitable and wastes time focusing on treatments rather than just being together and letting you know you love each other and asking him any questions you may have. I'm sure you'll need to be there for you family as well - all tough but important times.

Best wishes,
paul

[michael 1]

the steroids appear to have helped, they did not want to do it for some medical reason, not sure but he is doing better, depression appears to be the big killer from bmt from what I have learned

[Annettec]

Hang in there.....
You have a lot of people sending you positive vibes and prayers.

[michael 1]

he is up and down,,,,,,,gvh in lungs, ok days and bad ones

[michael 1]

doctors say he has 3 days, it is comfort care now

[Cheryl C]

So sorry to read what you and your dad are going through at present. May God keep you strong and may it be a precious loving time for you and your family.

[michael 1]

new years morning he lost the battle

[traceyn11]

I am so sorry for your loss Michael. Prayers for your family during this difficult time. This disease is awful.

[Neil Cuadra]

My condolences to you and your family, Michael. Your father-in-law's life may have been extended by his transplant, but didn't give him back a normal life. It's clear that you were doing what you could to add to his quality of life. The doctors were honest with you about his condition, but nobody can ever really be prepared to lose a family member this way. I'm very sorry.