Ollie -- God bless you -- we will be here and we hope you will be here as well. I guess once your numbers get up you can start counting your survival time. Please keep us up on it -- dave

I loved reading this wonderful thread full of hope and encouragement. Ollie, it looks like you did all the right things with questions and research. You made a solid decision and I think you just need to stand by it and move forward. I think the genetics of your "brand" of leukemia have a lot to do with your chance of relapse, the necessity of a BMT, and your ultimate survival. Even if you relapse (which we will pray you don't), you can go back to an induction chemo, try to get in remission again, and then do a transplant. That's what I understand from my oncologist.

I am 37 and have been in remission since my induction in October. We've done three consolidations which have all been a bit difficult for me. We are now trying to decide about a fourth one. I am not going for a BMT at this time. My genetics (inversion 16) are favorable without one and I am praying that this horrible thing is behind me. If you have any info about three consolidations vs four, I'd love to hear what you've discovered.

Thanks and God Bless!
R

PS--If I posted my pics, we could be twins right now! My hair had grown back and was looking quite trendy until my third consolidation when it all fell out again. Also, completely agree with you about the "bored out of my mind" side effect!

R - Thanks for the post and the comments. To be very clear, I am not a medically trained individual and don't claim in any way to be any sort of expert in the science or treatment of AML. With the use of the web and google I have gained sufficient knowledge to make what I feel was an informed decision. This was aided with many questions to my primary doctor, primary cancer doctor, and my transplant team.

One main difference between myself and you is age, which is really a big issue. It almost seems that after the age of 60, AML is a whole new ballgame. One of the main differences is us seniors can't take the chemo regime that you youngsters can take. For myself, a somewhat fit 70 year old, I have read and believe that the question of having a forth cons. is of questionable value. Indeed, some doctors question the beneficial use of three rounds, though I have read there is a 5% greater chance of not having a quick relapse with three rounds.

The main advice is to select doctors you trust, learn what you can about AML, question the doctors on any unknowns you might have, mill all of it together and make best decision you can. You need to go into this battle you have with the most positive attitude you can muster, which includes belief in yourself and that you can and will make it through the challenges ahead.

My hair is making a comeback though I am shaving my head until after my third round of chemo. Granted, I have lost about 1/2 of my hair due to overactive brain or age, and have found it interesting to be completely bald. Only negative is that about a month ago I had to begin to shave again, a chore I didn't miss. Going in tomorrow for third round of chemo and will inquire if there is something I could take to stop hair growing on my face. After most of 57 years of shaving, I didn't miss it at all. Also lost hair in other places like my pits and chest and other areas I won't mention. Maybe I will be like you and with third round will again lose it on my face.

R - good luck with your decision, and please keep us in touch. I believe we have a good thread going and would like to see it continue.

God bless, and be kind to yourself!
Ollie

Hi all,

Time for new picture and after a month countdown, start down my future. Have had third round of consolidation with, thank God, no side effects at all. Now ready to do everything I can to make my future path of the choice of going with chemo a success.

Reflecting back on the past few months, I believe I have gone about researching the aspects of my decision between SCT and Chemo a success. I believe I have covered all important areas of influence and now am glad the stress of making a decision is over. As one of my nurses told me, see what happens. If a relapse in a few months, will re-examine the issue again and if I make it months or longer, then will explore just having chemo again. Which ever it is, ready to begin living my new life, enjoying every day, having the best summer ever, and doing anything I can to help others who might find themselves in the same boat I was in.

Peace and Keep the Faith,
Ollie

Ollie -- glad you are about to join the survivors -- please hang with us and help those who are about to start. Nothing helps as much as being able to say: "I survived!!!! You can too." So you are going with chemo only and doing the wait and see just like I did 16 months ago. Obviously I feel like you made the right decision, although I would never try to push anyone one way or the other -- all cases are different.

Don't over-do it -- no use surviving cancer and dying of a heart attack. My son know someone who did just that. He thought he was superman after he survived. But chemo takes a LOT our of you.

Great to see you without the mask -- not nearly as sinister. ;o)

Take care -- looking forward to spending lots of time on this list with you. -- dave

Dave and all

Thanks for reply and you can be sure that my efforts are geared to making my future as long and positive as possible. In a month I too can begin to start counting my survival time, and can't wait.

Don't know if we should start another thread for recovery and try to keep this one going for those facing the choice of future treatment. Short of this board, there are few ways to communicate with anyone who is or has been in the same boat. I have mentioned to many of my providers, both medical and lay, the value of these "good" boards and also your story Dave. My nurses have agreed with me that many patients make a quick jump into SCT, which of course is fine, but that they don't fully know the side effects of either the transplant or GvHD and are shocked when faced with those effects. I am completely for either choice - my only desire is that it is a educated choice, and to help provide guidelines to materials that will help with with that choice. As with yourself Dave, I just want to be a part of the AML club and to use my time assisting others.

Going to explore the Dana Farber "One on One" program, which includes training on conducting the phone communication. If I get accepted, will share the results of these seminars.

In my life, for the most part I have tried to see every event and/or physical difficulty as a learning possibility and to take advantage of that opportunity to get the most out of it. Am I glad to have AML, heck no. But facts are facts, and I will milk my medical condition to get the most positive results possible. Ops, a little philosophy there.

For all who might be reading this thread, welcome and please join in. We don't bite, and indeed look forward to your opinions.

Ollie

Hi all,

Quick update and a question. Have finished last round of chemo without a problem. Now have an infected tooth, and as my counts are way down with the chemo, am living on oxycodone and waiting for counts to go up so dentists can do a root canal.Never a dull moment.

Question is that I have notice a slight lack of interests with my doctors at DF after I made the decision to go with chemo, the infection I am experiencing as an example. Before decision, were I to experience any difficulty, my primary doctor would be right there to examine and dictate a course to take care of the difficulty. Now, with my lower cheek swollen like I have a golf ball in my mouth, I deal with her PA who gave me a couple of pills and after a red blood transfusion, sent me on my way. Since my decision almost a month ago, I have seen my primary for a total of perhaps 30 seconds. Just wondering if my concern is in my mind or if others who chose not to have a SCT have experienced the same reaction. Almost like "you have made the choice not to fight AML and thus face the result I have told you will be coming, so to heck with you!" Perhaps like you Dave, though I have chosen the quality of life direction in my medical care, that doesn't mean I don't want to be around as long as possible.

Met with my shrink last Monday and we discussed the lack of any seemly support system for those choosing quality of life over BMT. She mentioned the cancer survivor groups, but not quite the same thing. Those survivors have a good reason to expect they might be cured, whereas we are in remission with an overwhelming expectation that we will be in relapse within a couple of years. As the baby boomers get into their late sixties and early seventies, the number of cases of AML or ALL will increase, and along with that increase there will be a larger number who chose quality of life. Now is the time to get support groups set up for those folks.

Sorry - rambled on a bit. Any comments are appreciated.

Ollie

Ollie -- I don't know if it lack of interest or perhaps it is just that there is not much use for them now. They have done everything that they can and as long as your blasts don't go up and the AML does not come back, they are really not of much use. That is just the way "wait and see" works. Apparently your white blood counts have not recovered quite yet, but they will -- it just takes time. Mine never got back to normal but they are good enough for me to function fairly normally.

My oncologist that I had during the chemo only saw me one more time once I was in survival mode (chemo finished and no longer neutropenic). But that was because he moved off to Florida. He did make sure that I got a really good follow-up oncologist. She is not an AML expert, but let's face it, you don't have to be an AML chemo expert to know if the AML is coming back or not. For that matter, I told her that I can pretty much tell myself if there is a problem. For sure I would start getting spacy again and perhaps a number of other things. She is still seeing me once every six weeks to check my blood just in case ... if I get to feeling bad I will call her right away and get checked out. No, as far as I am concerned, she is great and just as interested in me despite only seeing me a couple of times when I was in the hospital. I think this might just have to do with the personality of the individuals. But again, perhaps it is because as long as your AML does not come back there really is not much the oncologist can do -- actually, my onc told me that for normal things I needed to see are "real doctor." She was joking, of course, but what she was saying is that a general practitioner or internist can probably deal with my alergies, colds, flu whatever better than the oncologists can.

Does this make sense? Please let me know. We need to stay in touch. Have your started your "survival clock" yet? You need to set a time when you are kind of back to normal that you can remember. For me it was Jan. 1, 2010. I look forward to hearing from you.

Take care -- dave

Dave-
You did a good job expressing an answer to my question and agree with what you have written. I suppose my concerns are ones that rise when I am down, hurting, or in this case receiving bad news. I met and became friends with a gentleman my age at the hospital during my induction phase. He was in for his first round of chemo waiting for transplant match. Drs unable to find a good match and he finished his chemo rounds and entered into the "wait and see" phase. Received a e-mail from him last night that AML had returned and he is to enter hospital for another round of induction then if all goes well SCT with a luke warm match. So prospects don't look great. Bob did a lot to help me through my induction round and though I somewhat expected news, still hard to get it.

Question - should we start a separate thread for "AML chemo survivors?" Not in that class yet as my counts from consolidation round are way down so haven't started my survival clock yet, and expect to do so in a couple of weeks.

Thanks for the response. This thread has done a lot to make my early days of a AML patient easier, and my choices more informed.

Ollie

Ollie -- yes, I think that is a great idea. My feeling is that a lot of them just leave the list when they are finished. I guess you cannot blame them. For some it is a dark chapter that they want to put behind them. I did not see it that way. If I had not gone thru what I did I feel like I would really have just continued in a mundane sort of way. Well, this is some of the stuff that we can discuss on the survivor's thread.

I am inclined to hold off until you are ready to join -- it will only be a few weeks. Seems like forever, and could be your numbers will never get up to normal -- mine never did, and my oncologist said he has seen that a number of times before, especially at our ages.

Looking forward to seeing who we can get to join in -- maybe we can keep more on the list.

Take care -- dave

Dave et all:

Just returned from Dana Farber and my counts are on the upswing and no transfusions needed. Another week or two to reach plateau, BMB and I am done. Sort of a strange feeling not having my life centered around either chemo, recovering from chemo, or getting ready to get more chemo. As I reflect upon it, I believe all those with leukemia, be it ALL, AML, CLL, CML or Hairy Cell go through a roller coster period of months with our rounds of chemo. For some, that trip continues with SCT, or others, that physical and emotional period of time kind of ends as we here those words, "you are in remission," and also need to face the reality of the other words, "It will return!" Now we face the future which will never be like it was.

Dave, I figure I can start the "clock" in a couple of weeks, then we can work on getting a good thread going for others traveling the same route we are on, knowing there may be dark clouds over the horizon, for now the sun is shinning on our faces.

God bless you all.

Ollie

Ollie -- sounds great!!!

I have had to sorrow at several that I have tried to help that did not make it, but far more have survived and are now doing OK. I have not had to cope with the loss of a survivor yet. It is just something that we have to accept as well as our own mortality. But it is worth it to help others, and I feel that as survivors we can help each other as well. So, as soon as you feel things are on that positive course, start the clock.

One things I will warn you about -- feeling too good. You are right -- we will never be the same -- no matter how good we feel now. For me, I hit the wall when I go out and work hard for about a half hour -- might be quicker than that -- it depends on how hard I work. I was out using a gas hedge trimmer today -- one little tank of gas -- sometimes I run out before it does. But I have learned not to refill it and do any more. There is a limit and we dare not exceed it. Chemo has degraded all of our organs -- nothing has escaped, including the heart.

I heard of the father of a friend of my sons who was an AML survivor and just went out and pretended he was never sick. Died of a heart attack. My son badgers me all the time -- why did you go thru all that chemo stuff if you are just going to die of a heart attack -- trying to slow me down. He is right and we need to warn our fellow survivors about this -- know when to quit.

But on the other hand, we have to get out and do something and some virorous exercise is part of it.

Take care -- dave

Dave and all,

Just an update. Saw my doctor yesterday for a BMB and labs, and depending upon results of BMB,am in remission so I guess I can start the clock, right Dave? No restrictions except a lot of common sense!!! Still weak and it will take what it takes to get back to normal, what ever that is. Now to begin to take care of the minor medical problems that have been put on hold for the past 5 months, and is my dentists waiting with a grin from ear to ear. Guess he needs my monies to take his summer vacation. Some of my spare time is going to be spent at Dana Farber doing what I can to assist others with AML and to share my experiences. Of course, it is not all work and no play. I am cashing in on a dream I have had my whole life and am taking flying lessons. May never pass the physical and thus not be able to get a pilots license, however I still can learn how. And, of course, to keep up with these boards with thoughts of starting a new thread for those AML and patients who chose chemo as their route of treatment. We, too, need a support group.

God bless all of you and thank you from the bottom of my heart for the assistance you provided in the darkest of my days fighting this disease.

Ollie

You made my day -- this is the reason I am on this list and it makes up for some of the disappointments that come along. Main thing now is that you don't over-do it and that you be patient. I told you about the AML survivor who died of a heart attack, right? Chemo tends to take all of your ogans down a notch, incuding your heart. That is my theory as to why we get tired out so fast. I have been chain sawing recently -- when I was at your stage just starting out my survivorship I was not even able to think about starting a chain saw much less using it. But over time the strength comes back very slowly -- so be patient. I think you will pass your physical perhaps in a year from now or so. No reason why not. When you have a chance go ahead and start the new thread -- I would not limit it to chemo-only survivors though -- I doubt there is that many on this list -- perhaps all AML survivors would be better with no problem if others want to come on and ask us things.

What do you think? -- dave

It is so encouraging to see someone else hit remission! I am thrilled for you. =)