Hello Everyone,

I am new to the forum. My Dad was just diagnosed with AML at 68. It has been great to see the positive stories and attitudes on this website. He is a very healthy and active "elderly person". (I hate how they characterize over 60 as elderly.). He has no comorbidities and a performance status of zero. I am curious to know about anyone's experience with BMT/SCT at 65+. Thank you in advance! Happy and healthy wishes to all of you!

llsd,
Welcome to the board and to our group. I 100% agree the way age is categorized stinks. 68 is not elderly. Your dad sounds as if he is in great health going in. Fortunately there is so much more known about this disease today than even yesterday. Two of my physician groups are away at a conference and one called me today with NEW data being presented. AML is not an easy path, but it is far beyond where we have been.
There is hope and we all represent that hope. I go at everything as a challenge and hope your dad, you, friends and other family members look at it this way as well. Be positive, fight back and look to us for answers to questions or as someone to lean on.
Does your dad need a transplant? Has he gone through induction chemo? If you provide some details we can provide more information.
Be well. Stay strong. Looking forward to hearing more.
Andrea

Thank you Andrea. He just started induction therapy on Monday (7+3). As of today, it has only been a week since diagnosis but it feels much longer. My husband keeps reminding to me take it day by day, as it is going to be a looong road. As to my dad's Dx details, at the early stages they were saying that all signs were pointing to to APL (which we happy about, scary as that seems!). Unfortunately, it did not come back that way and now we are waiting to find out which subtype he actually has. So far his cytogenetics are normal and he tested negative for FLT3, so a little bit of good news there. Now we are hoping he will come back positive for NPM1.

Andrea, thank you for the kind words and I look forward to your and others responses. Good luck to you with the pending transplant!

LLSD -- welcome to this forum and to this thread, and I want to thank Andrea so much for welcoming you and asking some key questions -- others will as well as they get back on.

I am 69 and a three-year survivor of AML/MDS by chemo only. My onc said that a transplant for me would not necessarily improve my case despite the fact that my brother is a perfect match. Add to that the very high chances of GvHD and the problems with the procedure itself and I gladly decided to take the wait and see approach. I am not recommending it -- go with what your Dad's med team recommends ... that is what I did. I am only presenting it to you as an alternative that is working for me, since my recent vibes from all those on this forum is that a transplant is a given. I do not know that is has to be, and I view it more as a fall-back position.

If your dad is in as good a health as you say, his body should be as good as someone in the 40s ... I believe that I was. I used to (at age 60) look at myself and say that half the people half my age would gladly trade bodies with me. Mainly because of the obesity problem in this country. Of course, post chemo I cannot make that statement anymore. Recognize that killing off your dad's good blood cells is going to do some damage to all of his organs -- including his heart and his brain. That sounds terrible, I know, and I am not here to make you feel bad. Your dad will not resume his 40 year old energy and stamina, but he will survive, and he will be able to enjoy a rich and productive life. Being a 40 year old is not all it is cracked up to be ... personally, I would not want to go back! I look forward to getting really old, ;o)

OK, now as far as the time is concerned -- I can reall on about the second night of my chemo push -- there was a specialist who came in and pushed something in addition to what is in the IV -- it took about a half an hour, and we got to know each other quite well. I was early in the whole process and still did not believe I was going to survive, and I asked her how long all this would take. She said -- we're not going to worry about that! You are right to take it one day at a time. The way I looked at it was -- hey, I just woke up and I am still alive -- thank God for that and I am going to enjoy this day even if in the hospital. Thank God that He has given your dad another day of life and hopefully he is enjoying his stay in the hospital. Mine was not that much different from being at home because I never stopped working. This is critical to getting the time to pass quickly. He needs something that will make the clock move faster. If he is a computer type, that would help ... if not perhaps you could get him an iPad and get him into it. He has to think of it as an adventure as opposed to an ordeal. Most adventures have their ups and downs or else they would not be adventures.

OK -- medically sometimes they do not tell you things that you really need to know. For example, he will probably wonder what all the big deal is about chemo as he blazes his way through it. What they do not tell you is that it does not really clobber you until about several days, maybe a week after the entire first round. It varies. It will start with a metallic taste -- this is an indication that the blood supply to his entire digestive system, from his lips to his .... is being disrupted. It needs lots of good blood and that is something the chemo has just killed off. Don't let him have anything too hot or rought to his mough, like toast -- EVEN NOW -- any scratching or injury to his mouth (tell him to be careful, slow down and do not bite your tongue) -- it will not heal until he recovers from the first chemo round, which could be several weeks. More importantly, it could get infected. It is not the leukemia per se, or the chemo that kills -- it is the infections. So he needs to take all of these precautions -- not blowing his nose, not brushing his teeth with a stiff tooth brush, wearing the mask, not touching anything that is not sterile (I used to carry a paper towel around with me everywhere for this purpose), not eating raw veggies that could have bacteria on them, and on and on -- they will give you instructions. All of these things are to prevent infections because, if he does not get an infection, he WILL make it. In fact, he probably will get one or more, and don't worry about that because that is what the entire hospital is there for -- he will be in the best of hands as far as antibiotics and that type of thing is concerned. I had several infections as most on this list did who went thru chemo. But if at all possible try to prevent them. Minimize his contact with other people. For me it was only my wife and my grown kids for the duration -- other than that, no visitors.

All of this may sound stark and strict, but the time will pass quickly and before too long you will all have it in the past and he will be back to his old self again. We are here to give you that assurance and to advise you and to answer your questions. So, please, take advantage of us. We even have Cliff who is an MD -- he can interpret some of those med terms and all. We are here for you and for your dad -- let us help you. We thank you in advance for the privilege of serving you -- dave

Hi all, my husband was diagnosed with AML Sept 28/12. I have so many questions, He has been through induction ( nasty). Has had his first round of consolidation, ended up with pneumonia and VRE Super bug). All have been treated. He needs a chest X-ray Monday to make sure the pneumonia is gone, then maybe start chemo the next day. He really only got tired with this round of chemo. Will each round be the same? He is in intermediate group, the prognosis on the Internet does not look that good, long term. Can you be cured from this with chemo? Is there a cure? He thinks he will be working full speed starting in March, he is a landscaper..... What's the average length of time for people to have low energy? Glad to have found this group :)

Sharon: Keep pounding us with the questions -- that is what we are here for. What you describe is all normal and most of us have been through it. If he got thru the infections already, that is good, but as long as there is chemo there will be infections, and the main thing is preventions -- the mask, staying away from people, not eating raw veggies, etc. etc. -- we can give you more if you feel your med people have not done a good enough job with it. I say carry a paper towel and don't even touch anything that is not sterild ... that is how far I took it.

I am a three year survivor of AML/MDS with just chemo only. YES, it can be put into remission and kept there for a normal lifetime. The meds do not use the word cure because that implies no more concern -- there is always a chance of regression, but stay positive. I do not worry about it anymore than I worry about a heart attack or dying of anything else. Key thing is to just get these treatments behind you and then determine if a transplant is in order or not. Most of those on this forum who are patients have had transplants; I have not -- I was about 65 or so at that time and my onc said it was break even -- the transplant is a fall back position. I have had three good years without worrying about GvHD (Graft vs. Host Disease), something that seems to haunt the vast majority of transplant patients. However, you gotta do what you gotta do -- it depends on the type and the prognosis -- everyone is dfferent.

I would be your husband is in the 65 age range? Please let us know. Don't worry about what the Internet says and long term -- long term we are all dead. What is important is to get back to normal life and enjoy it one day at a time. My feeling is that the long term remission rate that we have had on this forum is well over 80%, so the odds are good especially if he is in good health and young (65 is young).

Energy will take a long time to get back -- maybe a year -- it is important that he does not rush it. Can he hire some young men to help him and stay on the supervisory side of things? I can do about a half hour of really intensive work and that is about it, and I am three years out -- at 69 perhaps this is all that even a normal person can expect ... I don't know, but I do know that things will never be back to the per-chemo levels as far as stamina is concered for me. But no matter -- hey, I am alive!!! The most important thing is not when it will come back -- it is, DON'T OVER-DO it now. Chemo takes it toll on all of a patient's organs, and the envelope can be pushed a little, but not hard like it could pre-chemo.

Please come back with more questions -- you will not be disappointed. -- dave

Sharon,
Don't read anything on the Internet. No good comes from it and I tell everyone that unless my name is attached to statistics, they are meaningless. 44% , 78% could represent 3 people, 6 or 60, meaningless. I am considered high risk. Who cares? I wake up sometimes at 12:01 AM and thank God for letting me make it another day. I go to bed every night thanking God for giving me one more day with my wonderful family- 8 months ago, I did not have this ritual.
My first round of chemo was terrible, second round a breeze, except fevers afterwards. Everyone is different. I am in a clinical trial now getting back into remission so I can go to transplant in a few weeks. I have been home now since mid-October and am symptom free, but not cured. I am thrilled being home and each time I go into the hospital, my eye is on the prize (HOME). Last week, I started negotiating with my nurses about early release from transplant, they were hysterical and couldn't believe I was not even admitted yet and trying to run home. I get my strength from home and family.
Tell your husband hang in there, keep his goal of March ,but to accept this "new normal". I am a bit slower now, but light years ahead of where I was in August, so one day at a time now becomes a literal meaning, not cliche. I was using a walker in August and running up and down steps now, u less I need blood, then I walk, slowwwwwwwly.
Ask away. I will try to help as best I can AND stay off the Internet !
Andrea

Dear everyone,
I hope all of you are doing well and enjoying the cold winter.

At the moment I am enjoying my time with my mom. She has been home for 1 week now. She feels quite well(only today she is pretty tired and with no strength at all) and I hope she will get even better in the future. We are going to have a check up next Friday and that moment of waiting the result at the doctors office scares me to death. I pray this second round of chemo to bring her to remission.
have you felt this feeling of tiredness after the chemo? she has been feeling quite well for a whole week after she was discharged, and it's only today she feels really down and tired. Do you think this may be a sign that she is not in remission?
Praying for all of you.
Hona

Hi everyone.
Im a newbie in this forum, but nicely surprised about all the wonderful people that participates.
Im 51 female. Diagnosed at 49 and 11 months :) and now on remission and with a full time job. Thanks God.

I've been reluctant to participate in any forum or support group.... because I dont want to remember all the pain I went through when diagnosed. I really try not to talk about it. It was so painful because I wasnt feeling sick at all, and I knew about it by opening an email with a blood test result that noone had indicated. I was trying to find out why loosing weight was so hard.... I exercized strongly,....and all of a sudden I had cancer... OMG

It is still very hard to participate in this forum for me, but I need help for post chemo stage. It has been harder than chemo. I have tons of pain inside, which I dont know if I dont want to face, or, as my psycologist says, its time to turn the page. So.. thats why it was so hard to come to this place....

On the other hand. I am a strong christian catholic and faith hold me while sick and in treatment. Im very grateful I found the leukemia in an early stage. I am very grateful I kept my job, Im very grateful every single day when I open my eyes and I see Im alive. I have so many things to be grateful.

So, as a newbie, I am posting slowly.... trying to protect my mind and heart, but I have the feeling that I have to help others. Its hard to get a balance this way.

Thanks so much

S

Shimuata -- first welcome to the list. Things tend to be a little slow on Fridays and weekends, but I am sure that someone who has experienced the type of pain that you are. I had some sharp pains mostly in my arms and lets after chemo. How long has it been since your last chemo? And specifically, where are you having the pain, and how long does it usually last. These details will help in finding those who might have gone thru the same things post chemo.

Please feel free to ask any questions -- I expect others who might have had similar pain will be able to help you. Take care -- dave

Hona: Are you saying that she is now one week after having chemo? They should have told you -- it depends on the individual, but most people do not have any heavy side effects of the chemo until at least three or four days after the chemo round, and this could last for a couple weeks depending on how quickly her blood numbers recover from the chemo. The chemo has killed a good part of her good blood that is needed to sustain life in the organs. Feeling tired at this point is normal -- it has nothing to do with remission and everything to do with the side effects of chemo. For sure make her next check-up and it well could be that she will need a transfusion to give her the platelets and white and red blood cells to sustain her until her bone marrow can begin producing blood again. The chemo is a shock to the system, sort of like re-booting a computer. The chemo essentially erases the leukemia cells, but in so doing it aldo takes out most of the good cells as well.

Not sure what precautions they told you to take, but she will be neutropenic - blood cells cannot fight off normal things that attack us all the time. Be sure that she wears a mask, has very few visitors (only the essential care takers), does not eat fresh fruit or vegetables (they might contain bacteria), washes our her mouth (she should be losing her taste to a metallic taste), and several other things that they should have told you about.

If we can help you further, please let us know. It is very important that you look after her right now -- her feeling tired just tells you that the chemo worked, and her normal bone marrow functions have not started producing good blood for her yet. It wil, but it might be another couple weeks before she starts to feel better about things.

We look forward to hearing from you -- keep us up on her condition and her tests -- dave

Hona,
We all have to learn not to hang on the symptoms of the day or the blood tests of the week. We need to realize that recovery from this disease takes its own course. Just make sure your mom eats well, gets exercise, and plenty of rest.

Please take the advice of Andrea, who I have now appointed as the expert on all things chemo and beyond, Andrea has a perspective that has been tempered by disappointment and buoyed by success. When she says "don't read," don't ! It serves little purpose and it just makes one anxious. Statistics are just statistics, and even if the best result happens to only 20/100 after some type of therapy, one can never know whether one is in the 20% or 80% group. It does not matter what the statistics are. That's why some people win the lottery Have faith in God.

Cliff

Shimauta -- I think I might have misinterpreted what you said in my last response -- I was think you were talking about physical pain, but on re-reading it, it sounds like you might be talking about phychological pain -- please correct me if I am still wrong. If you are talking about fear of the unknown, that is something that we all have experienced, and many are still experiencing. This becomes clear as you read around the various lists. We are trying to the extent possible to allay thses fears by making the unknown known. My feeling is that reality in all of its deficiencies is still the best way to fight the unknown. In your case you are probably concerned about a relapse. I know that getting your mind off of things and onto you work probably helps; but you still have to come home to it and you still are concerned about your family. As time goes on this concern will not be as strong. I am fairly sure that if you were in a relapse situation you would know it -- in fact, I doubt you would be able to work. I try to get some exercise every day and push the envelope a little bit -- not much, don't want to overdo it. And I am convinced that I would not be able to do what I do if there were any chance of my being in a relapse situation. I guess it is possible, and it is good to continue to have regular check ups, but if you are feeling OK that is a good sign that you are not relapsing. Please keep us up on how you feel. Things are quite slow on all the threads this weekend -- I am thinking people are doing their Christmas shopping. Take care -- dave

Hona,

Dave es correcto. Estas emociones son normales y usted dejar de hablar extensamente de ellos cuando el tiempo contina. Dave es absolutamente correcto que si usted no hiciera bien, usted encontrara trabajando muy difcil.

Cliff

Shimauta,

Por favor perdone mi error. Descuidadamente escrib a Hona en vez de usted. El sentimiento permanece el mismo, sin embargo.