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18 newly diagnosed with ALL - looking for people with experience

Posts: 1
Joined: Nov 2012

Hi everyone,

I'm 18 and was diagnosed with ALL about 2 weeks ago... Im day 10 into my intensive chemo and though my doctor gave me the long list of possible side effects, I really have no idea what to expect... Im constantly hungry but anything i eat seems to want to come back out... i get light headed after short walks, and i feel constantly tired. That's just the tip of the iceberg...

Is all this normal? What will my life be like in the coming months? Is there anyone willing to share their experience with me?



Posts: 683
Joined: Apr 2010

My 40 year old daughter was diagnosed in 11/11. All I can tell you my dear is that it is a long and rough journey for her as I write to you I am writing from her bedside in hospital. lots of infection and lots of fever. I am not saying that this will be the case for you. I wish you all the best from the bottom of my heart. Hugs and be well soon.She failed two of her chemo treatments and experienced all the side effects you are having. please keep in touch.

Posts: 22
Joined: Aug 2012

Hi Robert. I just wanted to tell you what to expect. I have ALL, was diagnosed 11/8/11. I have been in remission for a year now. Chemo unfortunately kicks your butt. What you are feeling is normal. I was extremely weak up until I was in the maintenance phase of chemo, I could barely walk up the stairs. I was hospitalized a few times from complications with chemo. I lost my hair and my finger nails. It was awful, but it killed the leukemia. If you have any questions, please feel free to ask me. It is a very long and hard road but stay positive and know that in the end, it will all be for a better you!

Posts: 1
Joined: Dec 2012

I am 20 yrs old and was Dx on September 14, of this year and I know exactly what you are going through. It does get a little better after those first couple weeks, but I have learned to always be prepared for everything. I believe most of what you are experiencing is normal, at least that is pretty much how I felt when I was there.
I have had several of the less common side effects caused by the chemo drugs, have been hospitalized a couple of time, and do feel tired a lot of the time. Now my body is getting a little better at handling the drugs and I am able to get out and be somewhat normal again. I know it may suck right now but eventually all of this will be worth it.


Posts: 2
Joined: Dec 2012

Hi Robert,

I was diagnosed with ALL in 2007, and am less than a month away from being in remission 5 years. Back when I was diagnosed and started treatment, it seemed like I'd never reach this point. But...I am here to tell you that everything you're feeling is normal. I was really weak and tired a lot and I remember being so frustrated with everything. A few things I learned that could help you feel a little better during treatments are 1) always stay hydrated. Drink as much water as you possibly can. My doctor told me to do this from the beginning, and unfortunately I did not listen and found myself horribly dehydrated and sick when I didn't need to be. Once I actually listened and started drinking lots of water...I noticed the difference! (2) my nurse told me to lift soup cans (instead of weights) while I was just lounging in bed/couch, or try to take as many little walks you can while in the hospital for your treatments. You will lose muscle mass, and it helps to be a little bit active, if you can be. (3) Stay positive! It will be hard at times, but there is a light at the end of what seems like a long, dark tunnel. Please let me know if you'd ever like to know anything more. Praying for you! ~Kymm

ginahuh91's picture
Posts: 6
Joined: Dec 2012

Hi Robert.
Im 21 and i was diagnosed this year on June..
I got admitted to the hospital as an ER patient and all those tests lead me to stay in the hospital for a month for induction chemo:/
I know you are only 18 and thinking why is this happening to me at this age.
I turned 21 and after 4 days I got diagnosed!
I had all these parties and plans that I was gonna do as a 21 year old !
But everything just crumbled after being diagnosed..
Cancer sucks and it shouldn't even be existing.
But stay strong and get all the treatments and kick ***!
Im almost done with my consolidation intensification .. and ill be going onto maintenance phase starting Feb.2013.
Keep yourself hydrated and eat with care!
yes. i recently moved and it happens that its an upstairs unit.. its gets really tiring and its normal since you are on chemotherapy.
I wish you the best of luck!
lets both kick cancer's butt:)
ill keep you in my prayers!

Posts: 12
Joined: Aug 2012

I guess I'm a little further along in the treatment for ALL. I finished my maintenance last month and all I can say is that IT DOES GET BETTER. My sleep feels restful again, my appetite came back, I can move around more now, I no longer feel like my brain is fried almost all the time and can actually focus on some things. Anyone still on treatment please stay strong. There is a life to look forward to after all this :)

If anyone has any questions about treatment or just want to share stories, I'd love to hear from you. My email is allenhanxiao@gmail.com. 


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