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Would like to talk with other AML patients

HiLo
Posts: 2
Joined: Apr 2009

I am 38 years old and was diagnosed with AML on March 18, 2009. I am married and have two children, a daughter age 14 and a son age 8. I am in the hospital right now having chemo and really want to talk with others who know what I am going through - the ups and downs, etc. So if you would like that too, let's chat!

senior33104
Posts: 4
Joined: Apr 2009

My name is Laura I am 23 years old and I am a AML survivor. I was diagnosed with AML when I was 19 years old I just graduated high school. There are alot of ups and downs with AML .
You lose your hair which is totally normal I lost my hair twice the first time it came back really curly and the second time it came back really dark. So when you lose your hair just think about the good side of it. You won't get all hot and sweaty during the summer you will also save alot of money on shampoo and conditioner and other hair assessories. Yeah some people will stare at you but it's ok just think they are the ignorant ones. I don't know if you had time to save some of your eggs but I am 23 years old and I am menopausing It sucks you are lucky that you have kids just cherish them and love them cause you are very lucky. As far as mouth soars ask for magic mouth wash and numbs all the bumps. When your immune system is low try to not eat fresh fruit or vegetablesstay away from large crouds cause you can get aick very easily I hope that I helped you a little I will pray for you

phuongt
Posts: 1
Joined: Apr 2009

Hi,

My name is Phuong and I was diagnosed with AML on Thursday, April 23rd, 2009. I'm currently in the hospital undergoing chemotherapy. The doctors say that the next week will be the toughest because my blood count will be really low and I'll be susceptible to infections and fevers.

I'm still struggling to understand why this is happening to me and coping with the fact that it will change my life forever.

Let me know if you would like to connect to share experiences of chemo treatment.

angelstar
Posts: 8
Joined: Mar 2009

hey guys well im 25yrs old i was diagnosed with aml last yr march of 2008 i went in remission it came back jan.23rd 2009 i am now back in remission with havin to go thru a way stronger more aggressive chemo then before now im in the progress of bein on a waitin list for a bone marrow transplant ive gone thru it all and soo many much more stuff so if anyone needs advice or just wana talk dotn be afraid im here to listen u can get reach me at
star78702@yahoo.com

jayceeinbedford
Posts: 5
Joined: May 2009

I'm about to go into the waiting for a bone marrow transplant (bmt). I'm hoping one of my two brothers will be a match. That would be very cool. And, if the oldest could be a match, that'd be the best, he lives in the same area as I.

I'm scared because this is the first time I'm going through this. I was originally diagnosed in March, 2009. They told me on Friday the 13th, haha.

I've done fine so far. Spending a month in the hospital was different. Especially since I went into the ER because I thought I was having a really bad asthma attack. Craziness.

Good luck. It sounds like you are a very strong person. That really helps to get through this. Good attitude, rest and a good diet is what they told me to concentrate on.

I'll look forward to chatting with you while we both go through this. I'm in Texas and 45 years old. So, you can teach me a lot.

janet

srvivr4
Posts: 6
Joined: May 2009

I am 29 and was diagnosed shortly after I had our last son in feb of 08 with AML and lymphoma. I achieved remission with my first round of chemo, but the dr's said I would not stay in remission without a bonemarrow transplant. So i went on the waiting list for stanford university, it only took about 4 months before I had 4 donors to choose from! I had my transplant and I am about 7 months out now. I am doing well, but still get worn out easily. We have four kids and I clean, make dinner, do laundry and go to softball games and horse back riding lessons while my husband works. There is life after cancer! Just know that the Lord is good and is there for you always! I praise and thank him everyday that it was me and not one of my children that got sick!
If anyone has any questions about what I went thru, PLEASE ASK!! I would love to help!!!
cslpainthorses@hotmail.com

Sarah

mauveb2k
Posts: 11
Joined: Jul 2009

hello sarah , hope you are doing well, i have a similar story, i am a 44 years old, divorced and living alone when i was diagnosed with AML on May 29, 2009, i was in the hospital for a month for induction chemo and achieved remission right after , my oncologist in UCLA strongly leans towards stem cell transplant as next step granting i have a match from my siblings, i still have to know the results of the matching test from my brothers, right now im taking a break waiting for next step depending on the results from my siblings, i am anxious and so afraid since i don't know of anyone who have gone through stem cell transplant, i hear so much about the possible dangerous rejection even w/ matches, also right now i feel pain in my joints and so afraid that the leukemia immediately returned even before the supposedly next treatment... it's too much going on right now, i haven't even grasped the fact that i have this sickness, i'm still shocked and couldn't believe this has happened to me... it's hard to understand right now, but you've come out of it and was able to bounce back to your normal life, i'm inspired and i look forward to be in the same place soon, thank you and god bless

SashatheSurvivor
Posts: 3
Joined: Jun 2009

I was diagnosed in June '09, just 1 year ago. I was 45 years old with 4 kids.

I went through a month of induction chemo to get me into remission and 4 additional rounds of consolidation chemo with high dose A-RAC finishing last Nov. 2. So I have been in remission just over 7 months and doing very well.

Physically, that is. Emotionally, it's been tougher. People either expect too much from me or can't get past the cancer thing.

I don't really know what to do to get on with my life. My oncologist told me that 2 years was the point where the risk of recurrence drops dramatically and until then I have about a 60% chance of staying healthy.

How have others dealt with moving on past the cancer? I've tried support groups and either people are in the early stages or relapsed- and that gives me the heebie jeebies.

cajunterrigirl
Posts: 1
Joined: Jun 2009

Hi Sasha. My name is Terri. I was diagnosed with AML in September 2005. I am from New Orleans and was diagnosed five days after Hurricane Katrina. This had it's own challenges. I am 46 years old with two kids. Just like you I went through one month of induction chemo and four rounds consolidation with A-RAC. I have never relapsed. I did go to MD Anderson in June 2006 to be placed on the bone marrow donor program (I do not have a sibling) but never had to go through bone marrow transplant. I can remember that first year, it was very hard to move on. I either felt survivor guilt or I felt sorry for myself, I was ridiculously happy about life but also prone to mood swings. My doctor also gave me the two year rule and then told me the next mark was five years at which time I would be declared cancer free! (However, in his next breath, he said we would more than likely keep a watch on my blood counts till the end of my life...so much for worry free!)

Well, October will make four years so we are on our way. I just wanted to respond to you because I was hungry to talk to someone who had gotten past the terrible stuff to know that there are folks who made it through it. I know what you mean about the boards. I have a theory about that, the only people on the boards are those that are in the middle of the drama, probably because they are sick, scared and stuck in bed. The rest are out enjoying life. The only reason I am here is I am at stuck at lunch at work so I thought I would read to see if any new drugs, treatments, were being discussed. I like to stay informed.

Advice is hard to give cancer patients, we each have to do our own thing, but the best thing to do is just to keep moving, doing normal stuff with work, kids, house. Be grateful but don't live in it. REply if you like, I just wanted you to know, you can make it. I did and if I can do it, you can do it. Stay strong and pray alot. Terri

ontariocutie
Posts: 1
Joined: Jun 2009

HiLo -

I too am DX with APL - I was DX July 16 2008. So I am finished with induction and the consolidation phases. I strated maintenance in April (2009). I am 35 year old female from Philly PA. So far I am doing really well!!!! So if you ever need to talk or just "vent" feel free to email me!!

ontariocutie@msn.com

God Bless!!

Tiffany

SashatheSurvivor
Posts: 3
Joined: Jun 2009

Thanks for posting.

It's so nice to here from someone who is out there living and not stuck like me.

Today is 8 months in remission. I saw my oncologist this week and she said that if I make it to 2 years she would consider me 'cured'. For what that is worth!

It's good to hear from people who are still going strong years after diagnosis.

Thank you!

CynicSan
Posts: 4
Joined: Jun 2009

I'm a 22 year old AML Cancer Survivor. I was diagnosed February 22, 2008. When they discovered the cancer my counts were VERY LOW. My Red Blood Cell Count was below 1. I like to joke back then my blood was basically water. Heh.

I've experienced all the ups and downs and even know a LOT of great remedies that can help with some of the problems. I can say I've never cried nor have been afraid ever since my diagnosis and am willing to help any other of my fellow AML buddies out there.

Just send me a PM and we'll get talking. If you have AIM you can IM me at StarFox610 and if you have MSN you can IM me on CynicSan@hotmail.com

Good luck and give me a ring if you need to talk.

wallygator
Posts: 2
Joined: Jun 2009

Hi CynicSan,
You are one dynamic and up person!!! Was so glad to have met you last nite in chat . You made my night . I,m 50 yrs older than u but you are a refreshing role model in this journey with the "Beast" . I,m not Aim or Msn but am on yahoo . If you want to send a note or just say Hi would like to hear from you . Your a clone of me I like to be up in all of this and your a Warrior and certainly in that category . My yahoo addy is :Wallygator19372002@yahoo.com . If you write me I will add you and we can chat 1-1 if you want . "Onward and Upward " Guy .
God Speed ,
God Bless,
Wallgator

paulss (not verified)

I needed to find a better way to treat depression then being medicated so started seeing a therapist and so glad i stopped taking the pills i feel so much better about everything now.

dyer
Posts: 1
Joined: Sep 2009

My son is 18 and was just diagnosed last week. He was in basic training for the army and was not feeling well next thing we knew he was on an airplane to Washington DC for more test. He is almost done with the introduction chemo and he is doing great. This is a hard concept to accept so any encouraging words would be great.

Thanks
Angela

livinatmoms's picture
livinatmoms
Posts: 1
Joined: Jul 2009

Hi, I am also 38 and just got diagnosed on July 7th, 2009 with AML - I am at UCDavis just finished my infusion, I am waiting for my blood counts to drop and start getting better to go home, I am a mother of 4 children and have a great support group from my family and friends but they don't know how it effects me because they don't have it. I was perfectly healthy not having even as much as a cold for the last 5 years and now this WOW! To tell you the truth I am still in shock, it's like all surreal - I just found out that the FISH test wasnt great and am awaiting the fourth test to determine the exact problem with it. My email is livinatmoms@yahoo.com is anyone wants to chat about AML or suggest any confident advise as to how to remain calm during and after this treatment.

Cancerfather
Posts: 4
Joined: Jul 2011

My daughter age 48 just completed first induction. No Remission. She lives in Davis and could use support. Any chance you could contact her?
Thanks

kstradford
Posts: 2
Joined: Aug 2009

My name is Kisha. I was diagnosed with APML September 25, 2001, 3 days before my 23rd Birthday. But I celebrated it and 7, going on 8 more birthdays since then. At that time I had one daughter she was about 18 months, she just recently had her 9th birthday and now has two brothers to celebrate with 2 yrs and 1yr old. All I can say is, pray. I don't want to preach, because it's not what I do, but I will say that prayer, prayer, and more prayer brought me out. I quoted lots of scripture, read the bible, and continued to pray, which I still do to this day. There were a lot of ups and downs, of course loosing hair, feeling nauseated, no appetite, but there were also a lot of good things, weight loss, enjoying family and friends, and spending time getting to know ME! So I'll just say I'm still here, I was in remission until 2006 when my doctor pronounced me as cured April 2006. I have a head full of hair, and I think that is what worried me the most, but it is back!!! Love your family and try to keep a positive attitude, even as hard as it may seem to be while doing it. I had 3 months of hospitalization, and then after that 10 weeks of daily treatment back and forth at the hospital everyday for an arsenic treatment (so wonder I didnt die from poison?? LOL) but in the end, I'm still hear and it was all through the grace of God. And I didn't save my eggs either, it call happened to suddenly, my doctor didnt give me that option. But as I mentioned I have 2 more kids, born in 2007 and 2008, and yes they were both born to me and healthy! If you ever need to talk or just want someone to listen, feel free to reach out to me cyprss_t@yahoo.com

marknewell
Posts: 3
Joined: Sep 2009

A close friend of mine, Roel Weilinga, was recently diagnosed with AML and we agreed to begin documenting his experience in photographs on FLICKR and also on a blog we will launch on blogger.com today for just the reasons you mention. I am sure Roel would be glad to talk directly with you, but you might also find the Flicker comments and pictures helpful. You can find them at http://www.flickr.com/photos/marknewell/

You can also help this process (and other AML patients) by commenting and helping us cover other issues of importance to others. Roel is now through his first round of Chemo and is responding well despite some setbacks - we both hope you have a really positive outcome as well. Mark

Kibugg
Posts: 1
Joined: Apr 2010

I am a Survivor and am now doing a study on AML and would like to know if anyone would like to share their story....Names will be excluded

mary1977
Posts: 6
Joined: Apr 2010

yes, i would like very much to discuss this with you. ever concidering emailing so that our stories about survival and trama that a person goes thru would be strictly confidential? would love that opportunity.
thanks

byornham
Posts: 4
Joined: Apr 2010

My husband has has been dealing with AML since Aug. 2005 and had a allo. transplant 3 yrs ago. I would like to here stories from other adult survivors. He is 51 now and have not met many long term survivors. I would like to hear from some so we don't feel so alone in this.

mary1977
Posts: 6
Joined: Apr 2010

i would love to discuss these issues with you. i am an AML survivor just recently. Dx in aug 09; and finally in remission as of April 2010. please write back; we'll talk
mary

mtbikernate
Posts: 31
Joined: Feb 2010

I was dx in March 09, and in remission in April 09 from AML. I'd be willing to talk...you can track me down from my user profile through my blog.

RickGeorge
Posts: 5
Joined: May 2010

Willing to share my experiences with other. Diagnosed in Jan.2009 and have been in remission for a few months. Severe peripheral neuropathy brought on by one of the medications utilized during a clinical trial at MD Anderson. Through the grace of God, some great medical staff and a loving family...I survived. Just another day in paradise.

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