That's always going to be something to deal with,I had MDS that converted AML after 5 month remission to ,happen after my nephew died,I had the MINI STEM CELL TRANSPLANT at VANDERBILT CANCER CTR IN NASHVILLE TENN in 3-11-2010 I still have anxiety ,They put me on xanax right off the anxiety is so bad,I had an unrealeated match,as long as you continue chemo you labs will always be up & down,It's be 4 years in march since my transplant I still get knotts in my stomach when I go for a chech up,Best thing is wear a mask when white cells are low ,use hand gell,and stay away from sick people,you need to ask is this going to cure me or do i need a transplant,I was 56 when i got DX,I had had over 30 pints of blood,within 10 days my new cells was growing ,had no blood since,At 6 months my blood type changed to my donars,have not taken any rejections meds since 12-2010 ,its was a scary thing to go thu & i was weak,but well worth it,i do it again if I had to,the worst part was I had to stay in Nashville for 6 months,but my daughter lives there,BY THE GRACE OF GOD I'M ALIVE,MY DONAR WAS THE ONLY ONE IN 7 MILLION PEOPLE,HE WAS A 25 YEARS OLD MALE ,I FOUND HIM IN 5-2013.GOODLUCK.

Good luck to you. This is only the beginning of your journey. I'm almost 13 months post transplant and 18 months since diagnosis and relapse is constantly on my mind. I have a client whose friend had a transplant something like 15 or more years ago and he says he still gets nervous around the time of his annual blood tests. I think it's all your personality. I'm a worrier by nature. Some people handle it better than others and accept things as fate which they can't do anything about so they don't worry about it.

I have trouble sleeping all the time, both now and before I got sick. I've come to need anxiety medication and sleep aids - something I never wanted but I've become dependent on them.

I only had one round of consolidation as a bridge to transplant. I remember during that time I needed many transfusions as well, both blood and platelets. I don't think it's unusual and I've seen many people on this board tell about how long it took for their counts to rise. Your doctors will let you know when there is something to be concerned about, you need to trust them.

I'm sorry I cannot give you answers, but I am asking many of the same questions as you are. All I can tell you is try to keep busy, get your mind on something other than AML. Be smart about avoiding crowds, wash your hands frequently, all the things they tell you to do. Don't be a hero - ask your doctor for a prescription for a sleep aid and anxiety drug. I have found the mental anguish as bad as the physical effects of this disease and treatment. And pray if it gives you comfort. I hope you find peace of mind and these next few months are merely a temporary pause in a long and happy lifetime.

Lou

Greetings Worried,

I can absolutely empathize with your concerns. I am just a few months ahead of you in your journey. I was diagnosed on March 22 2013, I'm 48 and was very healthy at diagnosis. I had no issues during induction and reached remission with counts recovering VERY quickly-especially platelets.

I am glad you have fear of infection-stay that way. My med team told me the AML and chemo won't kill me-an infection will. I saw several patience die due to infection while in the hospital for induction. From my diagnosis until Dec 26th, I did not go to a public building-church, work, stores ect. I am blessed with the option to telework fulltime. If you can avoid human contact especially now during flu season, please do so.

Now, when it come to slow count recovery, I have some experience with that. My first round of consolidation whacked my marrow so hard, it took 72 days for my platelets to make it to 96. My med team lowered my chemo dose from 3 to 2 for session two. My counts still took 60ish days. again my team lowered my dose to 1.5. I just finished my last and fourth dose on Nov 17th and I'm still waiting for my platelets to recover.

Everybody reacts differently to the chemo and protocols differ from location-some treat with three consolidation sessions. I have a certain amount of fear related to the fact that I had such long duration between consolidation sessions and lowered doses. All I can do is put complete trust in my med team and Almighty God.

I completely agree with Lou regarding medication to help you through this phase. Pre-AML I would never consider taking anti depressants, anti anxiety and sleeping meds but my med team observed my complete and utter shock at diagnosis and recommended Celexa and Tamazapan for sleep. These meds have helped me tremendously. But first and foremost, my faith and trust in God and HIS grace has gotten me through this ordeal.

When I worry incessantly, I refer back to Mathew 6:27-Jesus said "who of you by worrying can add a single hour to his life?" Hard to follow sometimes but that and prayer help me through. If you are on the chemo only track, you know you have plan B-Transplant. This site is full of success stories who are doing great after BMT.

Please know we are here to help you through this and praying for your success. Your counts will recover and many transfusions of both red and platelets are completely normal.

Blessings and Peace,

Julie

Firstly, Congratulations on achieving remission.
I was diagnosed June 2011 and also achieved remission at induction, then had a further 3 rounds of consolidation chemo. I have managed to stay in remission and remain cancer free!

Everyone responds differently to chemo.Some find it very difficult and other sail through it. How you body reacts has no bearing on the outcome. At each chemo treatment I would always spike a fever when my counts were at their lowest,was re admitted to hospital, and would recover when my counts started to increase.My fevers were always low grade and never landed me in icu. Just try and be as careful as you can. Follow the recommended diet and keep visitors to a minimum.

In regards to being paranoid of relapse , we all feel this. Your words of "I know cancer will always be a part of my life" reminded me so much of how I used to feel I expressed these feelings to my haematologist and he said, "Lisa, don't let AML define who you are as a person, yes it is part of you but let it be a smaller and smaller part of you". I used to think of relapse all the time,I used to find the time between blood test so stressful,but slowly I now rarely think of relapse and I hardly feel the need to sneak to my GP and get a blood test before my quarterly blood test is due.

You are young and concentrate on getting over one day at a time. Allow yourself to believe that you will get better. there are many of us that have gotten better and are leading our normal lives, just as we would have before AML .

All the best

Lisa

Warrior,

Let's clear up something. First of all, there is nothing PARANOID about having a fear of relapsing. Your illness blindsided you in the first place, and there is always the worry that if something so devastating could happen to you once, it could happen again. The trick is not to think about it all the time, but rather to always look forward.

I can tell you that now that I am approaching 2.5 years since my bone marrow transplant and am doing well, it takes more and more to throw me into a panic. This, however, happened just 2 weeks ago, when I came down with total body aches, unrelenting headache, muscle pains and fever. I am sure I don't have to tell you what I was thinking.

It turned out that I had Influenza A, even though the respiratory symptoms were minor. My CBC was fine and I was reassured. It took a severe illness to make me worry. I don't treat every little symptom as a sign of relapse, and I have learned from my current situation -- recovering from AML does not make us immune to the things that everyone gets.

Please continue to be positive. Things are truly going your way. It is not productive to worry. It is productive to rejoice....so REJOICE.

Cliff

Yikes Cliff -- I knew you had the flu but not like that. Yes, that would shake any of us to the core.

I am thinking -- why is it that I just do not worry about relapse. Well, being over four years out perhaps some would say I am in the clear. For sure the charts show that the longer you survive the greater your chance of survival. So, for everyone else who is getting one day closer to the ultimate sleep, for us survivors each day brings a higher chance of more days.

I think one reason I do not worry about it is because I am just too busy working and worrying about all kinds of other things. I guess early on I thought about it a little, but now, yes, to answer your question as stated by others above -- you will in a sense get over it and just begin to take life for granted like you used to.

Another reason I do not worry is that I feel good. I am convinced that if I were relapsing I would be down in the dumps -- all kinds of weird things would be going on, and I am certain I would know it. I did take my temperature a few times when I had a bad allergy or cold a few weeks ago, so I cannot say that I was not thinking about it at all. But certainly not enough to cause any issues. I only get checked once every six months now and I just do not worry about it.

Try to train yourself not to worry. Give yourself a pat on the back and a big reward when you go an hour without thinking about it. Then it might be two hours, and then a whole day. Next thing you know, it's gone. I think you can control it. Perhaps not get totally away from the concern, but concern and worry are two different things.

Hey look -- you are in the process of beating this thing -- you can do it and you are GOING to do it. If you beat that, you can beat ANYTHING. Even if I relapse I doubt I will let it eat me up. Just time for another battle. Where is Ed when we need him? I have faith he will be back and let us know that relapse is not the end of the world. And if you can handle the worst case scenario, then you can handle anything. -- dave

Hi, congratulations on achieving complete remission that is awesome!
Yes, you are right worrying about relapsing is normal and I have had and still have that problem. Especially when I am feeling tired and achy or any strange symptom. For me when I was diagnosed in Nov 2011 it was the fatigue that was most prominent along with re-occuring skin infections. You will need time, this is still so new for you , pretty soon you will learn how your body reacts after each consolidation and the signs to look for. For me I did get a Neutrapenic fever after each consolidation when my counts were low and I would need to go in to the hospital and receive IV antibiotics until they came up again, it was like clockwork. The first time was the hardest but then I started to recognize the pattern and was less worried each time. The Lymphoma and Leukemia society had a program where you could call and speak with someone who has been through treatment. They try to match age, diagnosis, and similar treatment. It was very beneficial for me to talk to someone who was my age (48 at the time) and had similar diagnosis and treatment. I am sure if you contact them they can set you up. Congratulations on complete remission again, what a blessing!
Take Care,
Suzanne

I don't think that fear ever really goes away. The panic and anxiety do lessen the farther out from treatment you get. I'm not far enough from mine to have less panic, but I do worry less if I don't get an immediate call from my doc or NP with TCell chimera results. DH passed the build up anxiety a few years out, and now 5+ years out there is a bit the night before the scan, but acceptance that if something shows up we'll deal with it.

Don't keep this to yourself - ask for help. Social work is usually great for resources. Take the anxiety meds from your docs if you need them. There is such an unneeded stigma around mental health help, that needs to be broken down. LLS has a young adult group that is online on Tuesdays nights for chat - there is a Facebook group that goes with it. There are a few more ALL and HL people given the age group, but there are a few AMLers.

I was 29 when I was dx in Nov 2011. My counts recovered in a normal time frame after induction (I had a clinical trial a bit different than the 7/3) My consolidations were HiDac.
Col 1 -2 65 days Col 2-3 61 days Col 3-4 74 days my plts were 70, had been for 11 days prior. Col 4- dose was reduced Day 78 - plts were 93 and they did my BMB (they'd been 98 at outside lab a week before). Day 141, relapse was confirmed. My platelets never went above 100 after Col #3, I had a slow slide until Dec when it was confirmed. Went back into remission Dec 2012 - released Jan 13. One round of consolidation while I switched hospitals for BMT. BMT April 2013.

The fevers between treatments - mine were clockwork. I could map out when they would happen on the calendar and know not to make plans. Have my bag packed and ready for my 14-20 day stay. (getting out depend on the attending - one would let me out as soon as I hit 300 others required me to hit 500) I'd get fevers, never had anything show up in my blood cultures. Then they'd stop and start again the day before my WBC would become measurable again, always between 4-4:30 PM. I drove the attending ID doc nuts. He finally would ignore them unless they went above 39, instead of 38.