brookem

Hi brooke I was diagnosed one month after turning 40 and I'm going to be 46 this year. My doctor started me on treatment right away. I have noticed quite a few people don't start right away. Ask your doctor why and make sure you understand. And if your not happy with his/her response let him/her know you will look for a second opinion. My first chemo didnt work so they increased the dise but still didnt work and I was on that for about 5 months. 2nd drug took for 6 months and it only put me in remission for approximately 1 1/2 yrs which should have been 4years. So I havent had any chemo since. There are no approved chemo drugs for me as I have a 17p deletion gene that protects cancer cells from being attacked by chemo. My doctor has me on high dise steroids for the last 15 months just to keep the desease in check. So as for not doing chemo your doctor might feel that your CLL hasnt started progressing yet. Remember there are no drugs to cure the desease we have so I feel the longer you don't have to put chemo in your body the better. My life span was 5-7 years I'm going on 6 yrs and I'm doing fairly good without chemo over the last couple yrs. But I do get steroid treatment 5 straight days every month. I feel if I was on chemo I may not feel like I do ir may not even still be here. I'm an avid reader on CLL and do a lot of drug research as my 5-7 is almost up so I bring all kinds of new drug types ti my doc and he tells my yea or nay so far only one yea and it hasnt been approved yet so im fighting to get it sooner. Feel free to askbme anything and I'll do my best to help. Keep strong and fught hard you will survive. All the best blazin.

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/leukemia/chronic-lymphocytic-leukemia-cll

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
Team WhatNext Community Mgr

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter