Lori,
I am so sorry that circumstances have brought you here but you have come to the right place. Right now I'm sure you are all still in a state of shock. First you should try to remember that there are many many tools to fight this disease. The wonderful folks on this site will help you every step of the way. It may not be easy, but I would encourage you not to place too much importance on things you may read from googling AML on the internet. Instead listen to your doctors and ask any and all questions here. You will get honest answers and great listeners here.

My 27 year old son in law has AML. I will help you any way that I can. Tomorrow you will have more information and can begin to tell us a little more about your son's situation. Please feel free to share as much or as little as you feel comfortable. We are here for you and your son.

-Tina

Lori,welcome to the website although I'm sorry for the event that brings you here. There are many very knowledgeable people here and they will chime in shortly but I thought I'd start off the discussion with some basics.

First, take a deep breath. Your son's youth is a considerable advantage and his general good health will enable the doctors to use the most aggressive treatment they feel is necessary.

True, some subtypes are more difficult to treat and are more stubborn, but they can all be defeated. The trick is knowing what you're fighting against and using the methods that work the best for the particular type he has. The doctors have a lot of tools at their disposal these days, something to deal with just about every curveball they throw at you.

I've heard many good things about Rush and you'll be fine there. Right now he is going through induction which will kill off the leukemia cells in his blood. This is a well established protocol that is the same almost anywhere in the world. The next phase of treatment is called consolidation. If it's determined the best consolidation treatment for him is a stem cell transplant you could always look into one of the more well known centers like MD Anderson in Houston or Sloan Kettering in New York, but you're in a major metropolitan hospital and I would think they are very experienced in transplants. You probably should get a second opinion whatever the treatment plan just to put your mind at ease. The most important thing is you feel comfortable with your doctors. You will know if it's the right place for you, believe me.

Speaking of stem cell transplants, if it is determined to be the best treatment option, they will test any of his full siblings for a match. If that does not yield a match they will probably go to the various registries around the world. There are millions of registered volunteers and there is a very good chance of getting an adequate match from one of the registries.

I'm not one to say "don't read anything on the internet". There is some good information and I think you need to be informed. But a lot of the information is outdated and some is just plain wrong. So take it all with a fairly large dose of skepticism. Stay to websites of major transplant centers, the LLS, the ACS and of course right here.

You and your son are just starting on your journey and right now you're very scared. This site is here to educate, comfort and calm you. Come as often as you like, ask whatever you want - nothing is off limits. The response rate on this board is very high and always helpful. Welcome aboard and together we'll make it through this.

Lori,

I am sorry you had the need to find this site but I'm pleased you found this amazing group of helpful, informed warriors. I am relatively new here myself-diagnosed on 22 Mar 13 (5 days after my 48th birthday).

The best advise I can give you is to stay away from the net for now. Prior to my diagnosis, I was a ferocious researching self diagnosing myself constantly. This was pre cancer. Once I got AML, I went into shock. The fire hose of information coming out of my Drs mouths was overwhelming. My team of DRs at LDS Hospital in SLC, UT gave me the worst case scenario first to manage expectations.

Like you, I clung to the hope that the cytogenic testing would put me in a favorable category. I blasted out prayer request across the world for that blessing. Then I waited...... About two weeks into induction with AriC and Idarubicin one of my docs stopped in to tell me I had Inverse 16 and that was good. That was all that was said. The next day, after asking further questions, I learned, yes Inverse 16 is good but further tests were forthcoming that would determine my treatment plan-specifically chemo only (consolidation) or BMT.

I had a stainless writing board in my room that the nurses used to ID themselves. I asked my doctor to write the names of the tests and the probability of favorable outcomes. The tests he wrote down were FLT3 70% favorable CKit 60% favorable. Again, I asked for prayer. There were two other patience with the same Inverse 16 diagnosis waiting for these results. True to the stats-two of us had favorable outcomes and one of us was diagnosed FLT3 positive.

What I have learned from these amazing people here, is FLT3 is treatable. Please drink in the wisdom from the warriors on this site and your medical team. I am only 2/3 through my consolidation chemo and come here everyday fro my daily strength!

Blessings,

Julie

Lori,
Yes, I agree with Lou -breathe.
While I was getting my transplant, my husband ran into a family whose 28 year old only daughter had just been diagnosed. I was unable to leave my room at that juncture, but my husband was asked by our nurses to speak to the family. I remember him stating they were in complete shock.
He (my husband) usually starts with breathe, learn as much as you an, ask questions until you are satisfied and stay positive despite how you feel initially. It will be a slightly rough ride during induction and given the raw emotion right now, it will be hard for all of you. You need to be a rock and as a mom, you will.
At this stage, there is no point worrying about the various mutations - it will make you insane. I remember being told, well, we hope you don't have x, guess what? I got x. The long and short is wait and see what the results show and then ask questions and develop a plan with your physicians. I interviewed many physicians and a few collaborated on my care (across institutions). I also ask a million questions as I have a medical background, so I need to know. Heck, I am 8 months post transplant, still getting treatments and I ask one million questions, I text my doctors and email as I need to. I am not a pest, but I consider myself a partner in my care plan.
Please, please keep us posted and let us know your questions, concerns, etc. you have come to an amazing group. Without the people here, I would have been a lost soul. I have gained so much strength here.
Be blessed. Peace, love and hope,
Andrea

Lori,

Welcome to our group. As others have already said, you have come to the right place. We are all veterans of this war, albeit at various stage of our treatment.

It is healthy to be optimistic about your son's genetics, although you should not be dashed if he does not fall into the group with the best outlook and the least amount of necessary treatment. I was found to be in a middle category. There were no obvious chromosomal abnormalities, and actually there are some, as noted by Julie, that place a patient in a favorable group.

I think the consensus here is that you stop reading articles on the internet. Some are inaccurate or too simplistic. Others are too technical for the layman to understand. I want you to believe me when I say that I am a physician, and yet I have avoided reading about my disease. I would much rather be a lemming and follow the Pied Pipers of my oncology team, even up to the edge of the cliff, because I believe they know what they are doing. I ask questions, but never ones that involve statistics, survival rates and the like. This knowledge serves no purpose. Just keep thinking that your son will get well, because in every likelihood, he will.

Because of my genetics, I underwent a T-cell depleted unrelated allograft, which was a KIR mismatch. Apparently the latter factor is associated with better survival. That is what I was told, and I have not read up on these characteristics of a transplant donor's stem cells. My doctor explained that to me and answered my questions. I do not want to know more.

September 8 wll mark 2 years since my transplant. I feel very well, have had to go on a diet (LOL) and am awaiting my 2 year bone marrow biopsy. The process of treatment for AML is far from fun. There are fevers, difficulty eating, terrible weakness. I mention these things, because your son will need your love and support as he suffers through the treatment. BUT>>>there is a light at the end of the tunel (I promise), and he will get well again. DO NOT DRIVE YOURSELF NUTS WITH THE NEGATIVES THAT YOUR READ ABOUT. I hope we can rejoice with good news about your son's cytogenetics. If the news is less encouraging than you hoped, just look around at how well members of our group with unfortunate cytogenetics are doing.

We are all here to help you and your son get through this. Our collective experience is at your command, so fire away!

Love to you and your son,

Cliff

Hi Lori,

I did exactly the same when my mum was diagnosed in April this year. I had to stop myself as we decided as a family that this was something that we would get through and stats and figures didn't mean anything.... apart from when they did give a % we just said well why is mum not in that %

Mum technically had one of the "bad" chromosome, but as this group taught me every single person is different so a m7 to one person is different to the next.

One of the biggest healers is being positive, whilst you are drowning in stats and figures from doctors and nurses just try and get everyone around you and your son to be as positive as possible,

We spent the last 4 months in a bubble, that bubble was our family and only very close friends, there were no visits from young children, friends would stay away if they had even a little cough or sniff. Limit his vistors.... YOU need to stay healthy so you can be there for him, so look after yourself.

Make sure he is on a low bacteria diet, gets up every day and walks (even if just around the ward) he needs to keep his strength as much as possible for each round of chemo.

Ask question here and in the hospital.

Mum got through 3 rounds of chemo with no infections and was in remission after the first round. She is now home with her blood counts pretty much back to normal :)

Thank you Tina. I am still reeling and it's hard to even articulate things. I greatly appreciate your support. - Lori

I'm still figuring out how to reply to these boards and the wii fi here is a bit sketchy, so I apologize. Thank you all - I feel like this hospital room is suddenly filled with people helping me. And now I am crying from gratitude. From all you are saying, it sounds like "this is tough, this is difficult, but this can be done!" And my son is young, strong, and wants very much to be cured. I want to tell you a little about him. Keir is 29, a grad of Columbia College in Chicago and a video editor. It's not a field with a lot of full time work so he was working a couple of part time jobs but had just gotten work on an interesting film, starting next week. So he was quite dropped on professionally as well. He has private insurance not tied to any job. He lives with my husband and I and has one full sibling. He is a runner, and two weeks ago, noticed he could not run more than a block. Got tired and winded on exertion. Waited a bit, tried again - same results. This last Friday, he went to the doctor, who thought he had a heart murmur.

The next day they called with "critical bloodwork results" and told me they thought it could be endocarditis. We rushed him to the hospital - a local community hospital - and there were told it was likely leukemia. The hematology oncologist suggested Rush and we came right over. His doctor is Dr. P. Venugopal and a team of others. So far Rush seems extremely good and they do have a major transplant program. I wish I could print out all your words. I wish I could offer more support of my own to each of you. I promise to pay your kindness forward and to stay as positive as possible. Thank you all so much.

Lori,

Thanks for sharing the background of your son's story with us. Like so many other young people with AML, the symptoms of his illness came on seemingly suddenly. Nevertheless, it is likely that things started to go awry months before he began to have difficulties when running. Virtually everyone (if not everyone) with AML becomes anemic, because the bone marrow is crowded out by blasts. The platelet count drops as well, because the precursors of platelets, the megakaryocytes are also crowded out. There is nothing wrong with your son's heart, by the way. When anemia (low red blood count) is profound, one gets what is called a "flow murmur," because the heart is pumping so actively, there is turbulence of the blood around the Aortic valve. When his hematocrit (% of blood that is made up of red blood cells), his murmur will vanish.

Although I was 58 at the time of diagnosis (twice your son's age). I was working out at the gym until 3 days prior to my diagnosis and only found out that something was wrong when I went for a yearly physical exam. The diagnosis is always startling and creates an anxiety that is beyond description.

It sounds as if you have a very accomplished, smart, and strong son. Smart people are often very inquisitive and like to know facts. Please tell him NOT to read about his illness, but rather to do what the doctors say and occupy his time walking around the ward and maintaining his strength. Since he is a runner, he is undoubtedly in great shape and that conditioning will serve him well.

Lori, I have three children. My eldest daughter is 29, like your son. I also have a 27 year old daughter and a 24 year old son. If something like this happened to one of my children, I would react the same as you. It is very hard to console a parent who knows that her child will be put through a major ordeal to become whole again.

We are hear to keep things in perspective for you when you are anxious, fearful, tearful, and just plain heartsick. I can tell you that our warriors are doing well. Your son has youth on his side and, believe me, will get through all of this. He needs to find ways to keep busy (books, movies, etc.) while he is in the hospital, because the days drag on.

One other comment. If you have heard horror stories about vomiting with chemotherapy, those are antiquated notions. There are many anti-nausea drugs that are given prophylactically. I NEVER VOMITED ONCE and know that if I were 29 and not 58 at the time of my treatment, I would have fared even better. Although I would have your son restrict extraneous visitors, seeing family is a wonderful medication and works better than anything. There may be tears, but soon those will end. There may be anxiety, but that will diminish as you and your family starts to understand exactly what is going on. ASK QUESTIONS constantly. Don't ask statistics, but ask about the treatment, what to expect etc. Do not feel embarrassed about writing down questions that you don't want to forget to ask.

Most of all, although I am not an oncologist, I have learned a great deal about AML from just living it (I have read very little about it, as I have recommended). I do know medicine, however, and can interpret lab results and the like for you. Hang in there MOM. Your son will emerge healthy.

Cliff

Lori,

You see from this board that there is every type of chromosomal Leukemia survivor on here. FLT3 , Inversion 16, NPM-1 blah blah blah.

I will say stop researching on the internet. This might just be my opinion, but most people who are constantly on the internet posting about it are people who have struggled, taxed their loved ones and need to put very sad stories and posts out there, in search of support. My heart aches for them. It really does, but when i was first diagnosed it gave me panic attacks daily.

Until found a post by a man named Dave. (who really kick started this site/group with a man named Ollie) They were both in REMISSION and actually had some POSITIVE things to say. A SHOCKER for me after reading gloom and doom. Even on articles written by medical researchers that are grossly outdated and write silly percentages of long term survival. One of my docs said that the patients he cured over the years barely get in contact. They just want to MOVE ON. He understands. He feels the internet is like this too.

This site is full of love and true wisdom. We pull no punches on the monster we are battling, but we battle with love, support and NO PANIC. That is what has brought me through my -so far- 2 year ordeal.

Rush is a fine institution. Trust now. Ask us ANYTHING. You have a community. There will be bumps in the road, but you will find the light at the end of the tunnel, and growth from all of this.

So many things in Keir's favor. Youth and strength being two of them!!

Ed

I want to express my deep gratitude for each one of your replies. I really cannot tell you how profoundly you have helped. Keir got his hickman catheter today, is working on an idea for a script, and later, we'll be doing laps around the ward. He is making all kinds of plans to keep busy, and is also reading the literature his own doctors are giving him and asking good questions. I'm incredibly proud of him. I have moments of suppressed hysteria - more along the lines of "how could this have happened!" - the typical stuff - but I know that this is wasted energy. Even if I knew - what difference would THAT make? The important thing is to do whatever can be done to get to a cure for him. I am sure I will have plenty of other panic moments here, but for all of you who scraped me off the ceiling, bless you and I give my promise to pay your kindness forward as soon as possible.

Lori,
I as so sorry this happened. I still ask "why", I was diagnosed in Nov 2011, started with chemo right away. I was a busy RN and just thought that I was tired from stress on the job. I got the same call about abnormal bloodwork. I was sitting at home in the evening and a MD called me, first time that had ever happened! I thought maybe it was a mistake, but no, it was AML. So shocked, it came out of the blue. It turns your life upside down, but each day as I learned more from my MD and wonderful RN's it has been doable, not easy like you said but doable. There will be a lot of down time, I call it "hurry up and wait time". So it's good to have things your son can do to keep him busy, and sounds like he is already working on that! I played a lot of cribbage with my family, and a lot of walking. The walking helped to manage some of the symptoms for me. One really good thing is that your son is young and in good shape. This site has helped me in so many ways and I am glad you found us.
Take Care,
Suzanne

Hi Lori,

I agree with Cliff and followed a lot of advice on how to move forward and not get caught up in all the doom and gloom on the internet.

You may also find family and friends share some of the "chemo" doom thinking that people end up as a skeletons and throw up and have a really hard time.

The doctors will reassure you that chemo treatment has improved a lot even in the last 10 years. They gave my mum anti-nausea just after and then when she wanted it (which was only every so often) ... they also gave anti-fungal and eye drops and made sure she cleaned her teeth after every meal and washed out to reduce or prevent mouth sores.

They seem to be more pro-active then reactive these days.

Our formula was our bubble. Every day mum got out of bed and dressed like a normal day, she said she would do this every day unless she was unable to. I think she may have had 2 days during her treatment. She said this was mentally telling her she was still fine to be normal.

She walked everyday, around the ward if her numbers were low. But just around the hospital grounds if she could. She didn't touch money for 4 months, didn't touch a lift button, or anyone apart from family. Didn't go to the hospital cafeteria, she did have a latte or two, but they were bought and taken to the hospital grounds to sit in the fresh air. Didn't go shopping for 4 months, even between treatments as she just kept her bubble. She also would deep breath everyday to make sure her lungs were expanding and staying strong.

Her diet was the low bacteria diet, and made sure she ate all three meals, had protein everyday and didn't lose any weight. Didn't eat out, was only family prepared meals (no leftovers), or hospital meals for the whole 4 months.

Drank lots of water.... make sure he is drinking even when it tastes really bad... the water will keep the insides being cleansed and help with kidneys and livers and flush out the chemo. The nurses should watch this but make sure the family remind him all the time. We had bottled water only and made sure she drank 3 bottles a day.

These are just things we did.... yes it may appear over the top or to excess but it worked for us and it helped reduce the chance of infections, which when your numbers (you will know all about blood numbers soon) are low or non-existent are very easy to pick up and then adds to something else his body has to fight.

Ohhh also ask about blood numbers. We got a print out every day, they didn't scare us, we are just number people, and we watched them go down (which is what they are meant to do) and then go up :)

Good luck and let us know how he goes.

Lori, We just wanted to say welcome, this site is full of loveing and informitive folks, you have come to the right place.....Prayers and Love,Billy and Tina

Lori,

I so completely understand you stunned panic. I am typing this as I sit in my husband's hospital room at the Simon Cancer Center/Indiana University Hospital. Although it's an outstanding hospital I am in fear every time a doctor walks in or a fever hits. Yesterday marks one month in the hospital. Like you I was on the internet and scarying myself to death. Felt like I couldn't take a deep breath until I reached out to the members of this group. Their advice and support made a world of difference. Do I still get scared ? Yes, but I have stopped turning to the internet and instead I am asking his doctors or coming here for advice and the experiences of this group. Since this is still so new for me I don't have a lot to advise other than take one day, one hour or one minute at a time. Any way that helps you get through it. Sending good thoughts and blessings to you and your son.