Dave,
I second everything you say. It was very thoughtful of you.
I just wanted to point out that AML is a rare disease. That may be another reason for not many new people coming to the forum. When my Dad got sick, my Mom said that she thought about everything-heart disease, stroke, prostate cancer-but she never in the world considered that he could get AML. It is rare.

Dave,

How do we get some of the people who have been on for a while to give their opinions about issues brought up by new members, like me? It seems that there are many people in this discussion group, but only a handful who contribute. I can imagine that, after a while, the new members will lose interest in discussion group where the participation rate is so low. What can we do. I think that you and Ollie have provided an incredible opportunity and both old and new members should be encouraged to become involved.

Cliff

Taska and Cliff -- thanks for your input and for making new people welcome and not afraid to pose questions or make statements. True, AML is rare, but for sure we welcome other types of leukemias and cancers aboard if we can be of assistance. I am thinking that most of the expertise here is with AML, but when it comes to side effects of chemo or things like that, we can sure help anyone through that.

Cliff -- the response and participation on this discussion group has grown tremendously in the past few months. Everyone is eager to help and jump in. I think we have plenty of patients with good experience, and I am convinced that there are a lot of people out there who want help just as you did a short time ago. I appreciate your willingness to participate. I am hopeful that we can get more people who are looking for help aboard.

If you fit that bill, just click the Add Your Reply button and let us know how we can help you. It is best to tell us where you are with your treatment and when you were diagnosed. we will work with you from there. You will be a survivor helping others before you know it! -- dave

I am new to this group. I was diagnosed with AML on June 22. I am a 48 y/o female who was otherwise very healthy. My background is diagnostic radiology. I see that this is not only a rare disease, but more common in men older than 60? I have finished induction and am in remission. I start consolidation on Sept 4 and am meeting with a transplant team in a few days to discuss other options. My family is ultra- supportive, friends have been tremendous and I consider myself lucky. Can anyone share experiences I may be encountering one the near future?

Andrea,

Welcome to the club nobody wants to be part of... :)

Congratulations on being in remission. That's a really really important first step.
I'm 43, was 42 when diagnosed. Also female. And yes, statistically we should be 65 year old males. And even then, it's quite rare. But you'll see here, and elsewhere that there are quite a few women in their 40s (and younger) with AML.

Do you know if you're going the transplant route for sure?

I had induction (reached remission) and 3 rounds of consolidation chemo as my treatment, based on the sub-type of AML I had. The road wasn't easy. A true roller coaster, and as I learned at the hospital as well as here, experiences are very personal and different. They differ from person to person and from one round of treatment to the next.
I had an easy time with induction, feeling much better after I was released from the hospital than when I was hospitalized. I had a few different side-effects with each consolidation round (from extremely dry eyes - no fun, to nausea, to muscle pain and fever). And my case was uncommon - I had no fever or infection when I was neutropenic until literally the last week, when I got a violent pneumonia.
I'd say being really careful during neutropenia is crucial. Once in remission, I understand the main danger isn't from AML but the treatments and the lack of immune system for relatively long periods of time.
Where I live, consolidation treatments are done as in-patient, so I spent about a month with each round.
I found having a support system super crucial, since going through physical and emotional ups and downs is really tough.

Now as I'm a couple of days away from the year since my diagnosis, I am feeling great, I have hair, and anyone seeing me now only thinks I got a haircut...they could never imagine I was so sick a year ago. so there's definitely light at the end of it.

How's your support system? How are you feeling?

I've found this forum to be incredibly helpful. Please feel free to ask anything.

Be well,
Abby2

Andrea,

I also joined this group recently. I have gone through the entire process already, having been diagnosed on March 28, 2011. I too thought that I was healthy at the time. Since then, I have had two inductions (the first failed), consolidation and then chemotherapy, total body irradiation, and bone marrow allograft. None of it was fun, but with the wonderful support I have (and it seems that you do too), you will get through it. I assure you. I am here to answer any and all questions you have as will the other wonderful people in this group.

Cliff

Thank you both for sharing information. Abbey2, I am not sure what ideas the transplant team will have. I have now met and read about several people that have only required chemo, one who is 7 years post diagnosis, so I cannot speak to that yet. I feel great. I have physical therapy and though I lost 35 lbs, I am regaining strength. Induction was not easy, I became quite ill and landed in ICU on a vent for 11 days. I had high fevers, but no infection revealed. I had every " it is" from my duodenum to the colorectal area requiring ng tubes and apparently my body and lungs went into overdrive, causing issues. My hem/onc has indicated that he has not yet witnessed someone getting that sick and bouncing back so quickly with no long term affects. I told him I am no ordinary woman and believe I have much more to offer this world. I have the most amazing family and worry more for them than me.
I was told consolidation, though a 5 day continuous drip, should not pose the same risk as the 7/3 induction and they say I should be able to come home on day 6 with no I'll effects. Is this true?
I am so glad I found this site. I also have 2case managers, one of which is my insurance company who assigned me a nurse with a radiology background and a counselor. Again, I know I am blessed and surrounded by extended family and friends who have helped. My son' s hockey team had taken turns dropping off dinners to our home, a huge relief to me that the family was being taken care of and my siblings took turns staying so my husband could continue work, as best he could. Thanks again and I am happy to hear all advice.
Aboz

Andrea -- I am glad you found this list as well -- welcome aboard. This thread was set up just for you. The rest of us are here to help. We hope you will stay aboard and help us help others as well.

You fooled us. You said "I finished induction" in your first post and I was thinking -- wow -- piece of cake for the young gal. (I am going on 69 by the way). But then in your second post you gave us the details -- WOW -- you have been through the mill!!!!

I would be remiss if I were not to tell you that I was a little shocked at this: "I was told consolidation, though a 5 day continuous drip, should not pose the same risk as the 7/3 induction and they say I should be able to come home on day 6 with no I'll effects. Is this true?" Well that is a very rosey picture compared to what you have been through before. I do not want to scare you, but I feel it is best that we have a very accurate grip on reality. My onc essentially told me the same thing going into consolidation. But I had some really rough times during consolidation, so I strongly urge you not to let your guard down. You know the drill -- wear the mask when outside of your room, stay away from people altogether to the extent possible (especially young kids), avoid touching anything (carry a paper towel around to touch things with, especially door nobs), wash out your mouth with the stuff they give you (salt and bakiing soda solution is as good as anything), wash your hands every chance you get, and on and on.

Please keep us up on any new side effects, although it sounds to me like you are an old pro at most of them already. You will get through it because you are a fighter, but like a fighter in a 15-round fight, realize that you are only in about the sixth or seventh round. You have been beat up and you have done some real kicking of your own, but this fight has a ways to go. But you are up to the adventure and you will overcome and win.

Its not like starting the fight over again after recovery. Your body has been beat up pretty bad and it cannot possibly be totally recovered. The oncs cannot afford to let you go too long before hitting you with more chemo because they are afraid that if you relapse they will lose all their gains. But going back to the boxing analogy -- you are still pretty beat up. So you really need to double up on your vigilence.

I would not jump the gun on a transplant decision. I am chemo only and quite glad I did not have a transplant. My onc said that in my case (I have MDS if they are right in their Dx), the transplant would not increase my survival chances. Now, in YOUR casae it might double them ... I do not know and I cannot say, so I am not recommending anything. In my case there was no advantage, so why do it? -- that made it much easier for me to make the decision. You have plenty of time to work with your med team and perhaps even get an outside consultant to help (they can recommend an expert). Get the best advice possible and then make the decision -- do what you will feel most comfortable about ... there really is not "right" decision (it is not a moral thing) -- there might be a best decision, but my feeling is whatever decision you will make is the best for you and you should feel good about it and get all of this behind you and get on with the GREAT life that you have before you.

Again, welcome -- I hope this will helps -- I apologize for being a bit brutally frank, but my goal is to keep you alive. In this regard I will be praying for you, for it is God that gives us all good things, including these great doctors and nurses ... love them all -- dave

Hi Andrea,
Congratulations on Remission and I am sorry you ended up in the ICU on a vent, that must of been really hard. I am so glad you are getting stronger everyday and bounced back so quickly. I am 49 and was diagnosed Nov 2011 with AML. I also achieved remission with my induction 7+3 chemo regimen. I have just had my 4th and last chemo consolidation round in April. I am just going the chemo route for now, based on my cytogenics which was considered " moderate risk for relapse" by my Onc. I did my consolidation as an outpatient. I would go to the infusion center and they would give me my morning dose of high dose Cytarabine then I would give myself my evening dose. This was on a M-W-F schedule for one week every 28 days for 4 treatments. I did need to be admitted to the hospital about 10 days after the treatments when my counts were down. I always developed a fever and needed IV antibiotics. I am not sure why it happened to me each time, some people do just fine. However each time my counts came back up the fever would go away and I was discharged home the next day. It is very important to follow the neutrapenic guidlines during your treatments, especially when your counts start dropping. You will be able to see the pattern especially after your first treatment. I could pretty much tell by looking at the calendar when I was reaching the "danger zone" of low counts. It always happened on a weekend, they would tell me go to urgent care to have my labs drawn. Urgent care was always crowded on the weekend with sick people! I would always cringe, OK so I am supposed to go into a room full of SICK people when my counts are down, just did not make sense. I learned the back way to the lab, had a mask in my purse, and learned how to circumvent that obstacle really fast. One thing I knew for sure was that I could always count on needing at least one blood and one platelet transfusion and it was on the weekend.
You will learn how to navigate your own obstacles that are special to you, and having supportive family and friends are such a blessing. Take care and keep us updated on how things are going. I am still taking baby steps and have been very blessed by everyone on this site sharing their journeys.

Just as Dave said, my personal experience was that I sailed through induction (unlike you, Andrea...) and had various side effects during and following consolidation chemo.
Just know that:
1. It's normal
2. It's very very individual for each person and for each round

Sounds like you have a very strong, healthy body (funny to say that with AML in the mix, but it's easier for the body to bounce back if it's strong and there's no other underlying conditions).
I was told the chemo's effects can be cumulative, and in my case that was definitely the case.

You have a big love for life (I can relate, for me it wasn't that I don't want to die, but that I want to LIVE) and an amazing support system. Both, I think, have a major role in how you go through this process.

Good luck!
Abby2

Well, lucky for me, the meds have blocked everything from about July 5 thru July 28. My family does fill me in on some funny outbursts I would have and stories I told while sedated. I am confident I will do better in consolidation. I am eating and getting stronger with the aid of PT coupled with believing I am strong and blessed. I also have an amazing German shepherd I rescued 7 years ago. Also a great part of my life. I foster and retrain German shepherds that have been tossed aside, dumped or abandoned. Their love is undeniable and another blessing in my life. I will do my best to contribute, but am not sure I have enough experience to share yet. I will continue to monitor the site and then possibly start a separate thread.
Thank you'll for replying. I am ok with open frankness. I am not one to sugar coat and though I hope for the best, I try to prepare for the worst ( physically and emotionally). I lookin the mirror already every day and say " you are a survivor, make the most of today". I have an amazing family. Thank you all.
Aboz

Aboz -- please keep us up on things maybe once a week or at least when anything major changes. We definitely want to track your progress. I am a dog lover myself, but would suspect you need to be extremely careful ... I know, get a mask for the dog! I would expect dogs are probably safer than kids. When I was neutropenic walking around the hospital with my mask (recommended exercise, usually pushing my IV stuff), if I saw a kid I would turn and go in the opposite direction. If I heard someone cough, I would also try to get out of range. You cannot be too careful -- it only takes one infection ... hey, but you know that!!! -- dave

Aboz,

Hey welcome again to this very sucky club. I have one dog right now that is a rescue dog from a shelter, and we just adopted a 5 month old puppy from the same shelter. I grew up with dogs, all rescues. My daughter loves all animals and she calls Scout and Tennyson her best friends. Oh about the kid thing, they do need to stay away if sick, but you can teach them to be careful. We had my daughter, then 3, and my nephews, 2 and 5, to hand sanitize right when they game in the house. They got very good about being careful and even wore pediatric masks and gloves. So if you do have kids in your life be careful, but you don't have to not see them at all. Believe me it would have been worse on my health if I never got to see my daughter.
Sorry induction was so bad for you. I was okay during induction, but had a huge problem with the chemo before transplant, lost 50 lbs, on pain pump it was so bad, had a seizure, so it just shows you everyone is different. Praying you breeze through consolidation. Met a guy who was in his 60s today, 3 years out of transplant and doing really well. So gives you hope. And any experience is good, even if you just want to complain.
Abby

Andrea,

I read your latest post and it brought back memories of having no memory! When I had my first attempt at induction, I became septic and had a fungal pneumonia that sent me to the ICU. I remember absolutely nothing of the week I spent there. My wife told me that I would call at 4 AM and say, "Get me out of here! They are trying to kill me!" My sister said that I called her at 2 AM with a similar off-the-wall frantic message. I have no recollection of those calls either.

Even though I had another episode of bacteremia and fever while waiting for my transplant to take hold, the rest of my treatments went well enough. The incredible thing is that although I was completely with it during those treatments, I don't remember them well at all. I do remember that the last week before going home after transplant, the hospital had a Legionella scare and I had to bathe myself with towelettes. That was awful! As I mentioned in a previous post, I wanted to get out of the hospital so badly that I flushed my food down the toilet so that the nurses would think that I was eating. Then, the day after discharge, I took a cab two miles from where I was staying near the hospital to my appointment and walked back the two miles with a mask and gloves. Crazy! You will have some funny memories too, believe it or not. When I tell people that I remember nothing of the ICU, they say that that was a lucky thing. Who needs to remember that?

Be good Andrea, because you will do great!

Cliff

Hello there,
my husband, Ben was diagnosed with this horrible disease in January 2012. We live in Ontario, Canada.
Since January, Ben has been through 2 inductions,and 2 consolidations.After the last cosolidation, he developed really high fevers for over 8 days. I know you will all realize, what he went through during that time. The never ending blood testing and x rays. They eventually discovered, Ben had an inflammed gall bladder(which has now been removed) and a fungal infection in the lungs ( now cleared up)
We were facing another round of consolidation, however with much thought and prayer Ben has peace with the doctor's decision to go for his stem cell transplant, November 2nd. 2012
Ben and I have been reading through the post on this site , since January and have only now, replied to a posting.
My husband is from Israel, he speaks many languages, however he is not comfortable in his written English to participate in the forum. So you have me, (with Ben;s permission)to ask his questions and keep you updated on his treatment.
I want to thank all of you, for your mounds of information and constant caring for each other. We truly feel like you are part of our family.
God Bless you,
Sandra and Ben.