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weareallwinners
Posts: 2
Joined: Jun 2001

I was diagnosed with Leukemia in 1997. I have been in remission for three years now and I have just started my fourth year. I would be happy to chat or email with anyone.

mpalmer
Posts: 2
Joined: Jul 2001

Hi, I also am new here. I was diagnosed with AML (M-5)in March of 2000, and after 4 rounds of chemo, 2 lung surgeries, and multiple complications I am in remission with a 20% chance of staying there. But I had less of a chance at surviving at one point and somebody makes up the 20% so it might as well be me. First of what type of leukemia did you have? My other question deals with remission....it is different than I expected....fearful thoughts seem to come and go without warning or deliberate thought....What is remission like now for you versus your first year? Did you find that it got easier with time? My wife and kids are still very aware and sensitive to my health......How long did it take for you and family for things to return to normal? Thanks, Mike

toni54
Posts: 1
Joined: Jul 2001

Hi Mike,
I was diagnosed with AML in July 16, 1999. I had the same amount of Chemo -- what fun -- I was pretty lucky, I didn't have any major complications.
I've been back to work now for a little over a year. I still get real tired and have to take at least two days off of work a month. My second year of remission is better then the first. The fearful thoughts still come and go but not as often. I can go for hours without thinking of cancer. I've even planned a vacation to Maui in Aug. My family is still very protective of me. I don't think that will ever change. Things still have not return to the way they were which in my case is for the best. I feel that I have lived two lives..one before AML and now. I feel very lucky to have survived. One of our group members just died from AML. I've always been a fighter -- I sometimes think that AML pushed me in a corner and all I could do was to come out fighting. I truly believe in my heart that I've won this battle.
I hope I was able to answer your questions.
Keep up the positive attitude!
Toni

tabs
Posts: 2
Joined: Jul 2001

Hi,
My name is Terry and I am in the process of being diagnosed. The Doc is doing a bone marrow biopsy tomorrow. i am so confused. There are so many different varieties of Cancer. Could you tell me a little about your experiences. I need a pep talk from someone that is in remission. God Bless you!

Terry

jpippi
Posts: 2
Joined: Sep 2002

Believe me I understand your fears. After a routine physical showed a slightly elevated white count, only 11,500 I was sent to an oncologist who did a bone marrow biopsy. She did prepare me for the worst case, bone cancer. I count myself lucky it was CLL, although incurable at least I have some time. I realize you have your results from your test now, but I just found this website. I hope so much for you that what they have found is managable. I'll go to your page and what turned up for you. i do have to tell you that it's been 2 years for me and I have no symptoms yet, I hope that if you have this cancer it moves slowly in you too. Good luck tabs!

tarishawna
Posts: 8
Joined: Apr 2003

I just sent a response to Terry. I started out with a 37,000 count and within barely 5 months was "in remission". I have CML and after I found out my doc and I talked and I decided to become a Gleevec guinea pig testing program. I have been in remission since March 2002 and so far so good. My red cells are still a little low and fatigued but I feel my doing okay.

tarishawna
Posts: 8
Joined: Apr 2003

Hi Terry.

I have been in remission for only one year as of March 2002. I found out I had CML (Chronic myelogenous leukemia) with a white count of 37,000 (which I guess is barely there) after trying to give platlets on 9/12/01, then after talking to my cancer doctor I went to Portland, Oregon to participate in testing for STI-571 (Gleevec).

I got on the program in October 2001 and after three months my March bone marrow test showed they couldnt find any leukemia and considered me in "remission". Boy that didn't take long. On my yearly visit, I still stayed in remission and on March 12th I again had a testing and am waiting for those result.

Where are you getting the testing done? I will tell you that its painful but my doc shoots me so full of pain killer that you notice the pain for just a short time. I know this sounds strange but you get used to the pain if that is possible. Really, it only hurts for a couple of seconds and then its over. When it is over your butt will be sore if you hit it up against something while you are sitting or lying down but that goes away also in about a week. You really won't even notice it.

I hope this helps. A little hint that I learned is to ask them to not put a large gauze over the area as when you try to sit down on a chair you will hit it and that smarts but it the gauze is small its not so noticable. Just sit at an angle for a day or two and you'll forget it unless you hit your but in just the right spot. But that goes away also.

I hope this helps you. They can knock you out if you want but then the recovery time is longer. If you go cold turkey so to speak and just take the shots its over in 20 minutes and then you are pain free and can do whatever you want but all you want to do is sleep and rest and then go out later.

winter51
Posts: 1
Joined: Aug 2001

First of all, Greeting, Love and Peace to all of us, to our family and friends, to our support groups.

My name is Winter, 50 yr old woman and I was diagnosed with AML (M0/M1) on Friday, May 11th, 2001, entered Robert Wood Johnson on Mother's Day 2001 to begin chemo. I've done two rounds so far, readying myself for what I consider to be the third and final.

I have always been one of those people with an unflagging faith in myself, in Life itself and this dis-ease has brought me to a new and even more wonderful level of believing and living. I've never been afraid of the dis-ease, which we have taken to calling Mr. Luke Kemia but I was certainly terrified of chemo. I seem to have done pretty well with that part of it... some nausea and diarrhea, sleeping through the weakest moments... and now that I've banged out two chemo sessions, I'm ready to kick Luke's butt with #3 and add this as another page to the scrapbook.

I've considered myself at 100% championship in this. I am not a victim nor a survivor. I'm a champion.

I'm thinking of checking out Yahoo for more AML groups or to start one if there are none. If you are interested, email me at cymraes@earthlink.net

Peace and Love from the Lady of the Lake,
Winter BelViso

isabelle mosley
Posts: 3
Joined: Mar 2003

Hi Winter, I was diagnosed with AML.in Jan. 03. I''ve had two treatments of chemo and will have another one the end of the month. issy

lulubelle
Posts: 3
Joined: Apr 2002

Hello my name is Lauren. I just signed up today 4/3/02. Do you have an AOL name if you do mine is lulubelle528. We can email a time to talk to each other.I am 16 years old and I had cancer when I was 2.Do you have an life time effects from your treatment like I do? What is your name and how old are you? I would love you to reply to this so we can talk.

dszabo's picture
dszabo
Posts: 16
Joined: Jul 2002

WOW--first i want to say Congratulations! That's great and i am very happy to hear that. I am 22 and was diagnosed in november of '01. I am currently finishing up my last phase of liquid chemo and then will b on the 2 yr maintenance. I would really like 2 hear from u b/c i have many questions 4 u. Hope 2 hear from u soon, Danielle

tarishawna
Posts: 8
Joined: Apr 2003

What type of leukemia.

I have CML and have been in remission for one year after being on a test program through Oregon Health Services University in Portland, Oregon. I just had my sixth month after the program in March and am waiting patiently for the result.

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