Welcome Gellings04,

Although I cannot answer your question regarding life after BMT as I am almost one year from diagnosis, treated by chemo only, I wanted to welcome you and offer prayers for your wife's successful BMT.

There are many warriors on this site who have post BMT expereince who I am sure will offer their perspective. God's blessing on your family.

Blessings,

Julie

Hi, Gelllngs04 -

Though I am so sorry for what brings you here, like Julie, I wanted to offer you a warm welcome to our group. Life with AML is just such a roller coaster, isn't it? My now 69 year old father was not able to continue with SCT, but when that was still on the table, the concern was extreme as to how things might unfold. It seems such a positive thing that your wife is as young as she is! While none of this is easy, there seems every reason to think she will do beautifully. We are here for you, should you ever need support or comfort of any kind.

xo
Robin

Hi Gel. Welcome and I'm sure everything will turn out just fine. I am in my 15th month post transplant, M1 FLT3 positive. I had slightly reduced intensity conditioning after 2 rounds of induction and one round of consolidation chemo. I did not have radiation, I had many "speed bumps" during my hospital stays after induction and transplant but once home I've been pretty good.

Life is getting back to normal. In fact, it's not much different than before, maybe better because my perspective on life is completely changed for the better. Healthwise, it takes some time but I feel as good as I did before. It took me a few months until I didn't need a nap or two every day. The first 100 days you need to be super careful with the mask and gloves and all. After that be smart but you can loosen up a bit. I went back to work within 6 months at least part time. I now work almost as much as I did before which was and still is entirely too much.

I still have some chronic GVHD mostly some dry mouth and other oral problems but nothing that prevents me from eating normally.. The skin was a little problem at one point but no big deal. I've largely avoided nausea, diarrhea and other unpleasantries. I went off all medication for a short while about 8 months post transplant but had some GVHD flareup and went back. I am currently being weaned off prednisone - I take 4mg a day and never took more than 10. And I take Mepron (yuck) and valcyclovir as preventative measures. I've been able to go on a plane, take long car rides, go to the ballgame, stay in a hotel, walk in the mall, all with no problems.

So as you can see, I've has some minor inconveniences but nothing I can't handle. Some people have had it easier, some more difficult. But it's not like I've had to greatly curtail my normal activities or my lifestyle. It's a little different than before, my mental state is completely changed but I think for the better.

I hope things go smoothly for your wife. So far it appears that she has responded well. In four days she re-boots her bone marrow and before you know it things will be back to normal. Good luck.

Lou

Lou,

Before I welcome GellingsO4, I just have to give you my condolences on taking Mepron! OMG. I took it for 2 years, because I was allergic to sulfa (in my other life) and, since I had a T-cell depleted transplant, my T-cell function was like an AIDS patient for quite a while. The day I stopped that disgusting yellow paint (which I still gagged on to the very last day), I wanted to celebrate. I guess you will be stopping it relatively soon as well, since your transplant had T-cells.

Gellings04,

I am sorry to hear about your wife's diagnosis, but you need to look at so many on this website who have done well post-transplant, myself included. I was not FLT3, but was in the intermediate category for which a BMT was recommended. I was 58 at the time. I had full bore conditioning, including TBI like your wife. Since I was transplanted at Sloan Kettering, I was given a T-cell depleted transplant, something that they like to do there. The positive thing about a T-depleted transplant is that there is no GvHD and no need to take prednisone, tacrolimus, sirolimus, or any of those drugs. Although my doctor said (and wrote in published paper) that T-depleted transplant patients do well despite not having graft vs. leukemia effect, I wasn't so sure, but ultimately was very happy that I did not have GvHD. I was diagnosed with AML 3 years ago this March 28. I had my transplant on Sept 8, 2011. I have had few speed bumps, although just recently, I had a post-viral syndrome after influenza A, that I thought was doing my lungs in. It has resolved.

Now the good part. I eat anything I want. I go anywhere I want. I am now back at the gym and reclaiming my physical fitness rapidly. Today, I swam 10 pool lengths easily and then lifted weights. And I am 61 now. Can you imagine how rapidly your wife will regain her strength?

Eating post-transplant was hard for a while. I am sure your wife got Palifermin to protect her mouth from sores. I did not have any, but that stuff does not protect the throat. I had to be fed by vein for a week. If that happens to your wife, do not worry. That will end. It took a while (prob 6 months) until my sense of taste totally returned to normal. Then I started eating everything in sight. Life is good. Please tell your wife that the masks and gloves will end. Her life will return to normal in all ways. She will laugh and smile again. She will not have to be afraid of catching diseases. If she continues to do exercise (like walking in her room or in the hallway when they let her), she will be ahead of the game as far as strength. She should try to eat as much as she can, when she can. I lost over 40 lbs during my saga, but gained it back and now have dieted off 15. Muscle mass will return, even if she does nothing but daily activities.

Gel, please do not do a lot of reading. It serves no purpose but to make you and your wife anxious. As I have said many times on this website, although I am a physician, I do not even know the M type of my leukemia. I do not know what my survival statistics are. I only know that I lived through the trauma and came out the other end whole. Your wife will too. Your job is to be there for her and to make her feel as "normal" as possible as she totally returns to normal. Personally, I did not feel exhausted for very long. My stamina returned even before my sense of taste. The further she gets from her transplant (her new birthday), the less she will think about it. Although it would be disingenuous of me to say that I don't worry about blood tests and the like, I certainly worry less as the days pass.

I am glad you joined our group. We never sugar coat, nor do we, in general, wring our hands with anxiety. The human body has a wonderful way of repairing itself when given the chance. Unfortunately, something like AML cannot be eliminated without the sometimes awful treatments that we receive. But the transplant will give both you and your wife the ultimate gold ring. Hold on tight, keep your eyes straight ahead (blinders on), do not look over your shoulders, and just stare at the faint light in the distance. It will gradually grow brighter and brighter. Then you will know that you both have made it through this ordeal, and I have every faith that you will.

Cliff

Hi Gellings04

I am not really able to answer any of your questions as my mum has just started the same countdown (she is on day -9 )

All I can say is that before when mum had finished her chemo and had been home since August she has lived pretty normal. She may have drank more water, ate a little better and made sure she did her exercises, but everything else was the same.

Yes there where more blood tests every couple of weeks but it was a comfort more than anything to have them completed.

Good luck for the next couple of weeks. Positive thoughts all the time

xxx

Gel -- Welcome and while we hate the reason you had to come here, we appreciate your joining us. I am chemo only so cannot speak on any transplant recovery, but I believe in most cases, mine included, that recovery from the chemo and BMB will take several months, But there is not reason that she may not get to a point where things are for all intents and purposes back to normal. The only thing that I see could stand in the way of this would be a bad case of GvHD, but at her age I would not anticipate that being a major issue -- dave

Thanks for the well wishes and information. She had her last dose of radiation this afternoon and now we wait until transplant tomorrow. Thanks again.

Greg

Hi Greg,

I hope your wife received her new stem cells on schedule yesterday, that she has been tolerating her treatments well and is feeling OK today. My husband and I just learned that his BMT preparation will include some days of radiation, like your wife received.

We are thinking of you both.

Monique & Sal

The transplant went as good as could be hoped for. Today is day 4 and she has her first infection. She spiked a fever last night of 102 but the doctors are not sure what is causing it. They got it down to 101.2 but that was the last I heard. She's been sleeping a lot, which is to be expected. No nausea but has had an upset stomach. All in all, not to bad so far.

great news greg glad to hear all is going ok :)

xx

Greg,

So happy for your wife. I had an infection after transplant. Those fevers are expected. The doctors know how to take care of them. When your wife's counts start to rise, the fevers will be a thing of the past. Encourage her to eat as much as she can and to keep moving and deep breathing. I asked for an incentive spirometer to help me get my lungs inflated. They certainly have one for her if she asks.

Monique,

I too had radiation as part of my treatment. I am not sure that you read by posts back then, but they blasted any kind of rock music that I asked for and I sang or whistled my way through the TBI. I was never nauseated and really enjoyed the music. I know that not everyone gets TBI as part of their regimen, but it worked for me and I am grateful to be doing so well. I am at the point where no one really can believe I went through all of that torture, because, as I say to everyone, I emerged whole at the end of the tunnel. Sal will too, partly because he has someone like you to love him so much.

Cliff

Today is day 8 and I just received a phone call that they are taking her hickman out believing that it is the cause of her infection. She has not been able to shake her high temps now for that last four days. They plan to put it back in in a couple of days after her infection goes away. I read Dave's story and they talked about doing the same but never did, has anyone here had theirs removed?

Greg,

I think my bacteremia shortly before my discharge after transplant was one of the factors prompting removal of my port before discharge. Foreign bodies are always potential niduses of infection, and so when a source is not found, they are removed. Not to worry. These are the "speed bumps" that we frequently discuss on this site. Par for the course, and a new one will go in soon.

Cliff

Hi Greg,

Sal had his PICC line removed last year after his first induction treatments, as they believed it was the cause of an infection. He had a new PICC line inserted for his subsequent inductions. I hope your wife is continuing to recover well.

Cliff,

Thank you for the information regarding your radiation treatments. Sal is nervous, but ready, for his radiation. He had been hoping that radiation would not need to be a part of his treatments, but his BMT doc likes to use this treatment since Sal is young (46) and strong. I will be writing more about this soon and will be looking for more of your experiences and insights! :) Thank you.

Monique

Gregg:

Actually they did remove my hickman on suspicion it was causing an infection, but not the first time. I argued for more time the first time they wanted to do it and fortunately, my numbers came up and overcame whatever the infection was at that time. I was not as lucky the second time it happened and they removed my hickman which it a story in itself -- unlucky thing happened that is highly unlikely ... only time I ever heard it happening. PICCs are easier to insert and remove, so I would not expect any issues. I did get a PICC for my final consolidation, as I recall.

You have to do what they recommend -- it will work out for the best. I argued for an extra day or so, but it probably is not good to take chances like that if they are recommending something else. It seems when they cannot find any other source for the infection, they blame the port -- or at least want to remove it to see if it is the cause. We all love our ports and hate to part with them, but once things are stabilized they will get you another one.

Thanks -- dave