49 replies to this topic

[Judy2]

Hi Charlie,

Welcome, Welcome, Welcome. As everyone says, this is a great place to get info and to vent. I was dx last May and this site has been a lifesaver for me. You will find a lot of of very knowledgeable and supportive people here. Please post whenever you have a question or if you just need support.  We are here for you.

Pat, I  had to Google TTFN and brb, I think I need to start hanging out with my 15 year old niece more!!!

Judy

[hannibellemo]

Hi, Judy,

You mean you didn't have to google "IOH"? Oh dear, I made that one up, I wonder what it really means?! Here's a handy little list in case we ever need it again:

http://www.netlingo.com/acronyms.php

and another:

http://www.freewareh...g/acronyms.html

Pat

[lrock]

Hi Charlie!  Nice to meet you and these guys here are great.  I've only been part of the group a couple weeks (dx 1/20/12) and I'm also just starting Tasigna.  Had some issues getting it, so started last night.  I'm 39 in SC.   Please post whenever you have questions, and I've found these guys are good for laughs too (as you've seen)

Leigh

[NotJack?]

Hi Charlie,

Nothing more to add, other than a welcome.  Things seem to get easier after a couple of months.  Dx 8/31/11.  Jack

[Judy2]

Hi Pat,

I thought loh meant Ladies of Harley, I thought you drove a motorcycle I'll be taking web acronym lessons from my niece, I think on a bi-weekly basis. I'm really starting, or maybe not starting, to lose it!!!

Judy = me in a few months!!!

[cwade61]

Thanks to everyone who responded. I look forward to getting to know all of you!

Charlie

[kreuz]

Dont worry...all of us will be OK and fine with the TKI drug! i'm 27 tis year dx last year Oct, will do my blood test again next week. hope everything will fine for me

[bhiser]

Hi, Charlie:  I am new to the site but have been living with CML for 7 yrs. I think.....I realized how far I had come last year when I realized I really can't remember that date anymore!    I CAN say that my life is good, and I am dealing with side effects which give me the opportunity to check out every bathroom in the city!  haha!!  It took me a year or so to be confident that I was going to be just fine.....I consider myself in EXCELLENT health, and that perception is very important!  I do a lot of things 'right' for myself and I suspect you will also get to that place.  For myself, it has been a journey that I travel with my husband and all my friends, who are very good at pointing out the bathrooms!  God Bless.....

[JMGrad]

Hi Charlie! Nice to meet you. Im Jean and I was just diagnosed on 1/18/12. I'm scared too but I LOVE it here. This is a great place for information and smiles

[SharaT]

I am also 30 female that is married with 2 girls ages 2 & 4.  I was DX yesterday! I went in for a check up came out with CML.  not really sure how to take all this.  Feel like I'm in a bad dream!! God speed to everyone!

[mikefromillinois]

Hello SharaT,

Glad you found this site.  You will find it to be a great source of information and support in upcoming months.  In the beginning CML will be all you think about.  After a while you will have to remind yourself that you have it.  We are fortunate to have several wonder drugs that do a great job of controlling the CML.  Hang in there and remember things will calm down before you know it.  Trey's blog is an excellent place to check out - don't be overwhelmed by the volumes of info - use it like an encyclopedia: http://treyscml.blogspot.com/

Wishing you good health and many happy days...

Mike

[CallMeLucky]

Hey Shara - I was 37 when diagnosed about a year and a half ago.  Two boys 4 and 6 at the time, going on 6 and 8 in a few months.  I also got blindsided at a physical, was in otherwise perfect health and no idea anything was wrong.  That is fairly common for CML.  It's hard to take it all in, I know you're scared and in shock.  Give it some time.  The words leukemia and cancer are scary but you will soon learn that what we have is a bit different.  No walk in the park, but more of a chronic illness that needs to be treated with meds for the rest of your life than it is a terminal disease.  Most of us will live our normal life span with CML.  Ask questions and hang in there.

[pammartin]

HI SharaT

Welcome.  You have found a good place by coming here.  Take care

Pam

[KPorter]

Just joined the group. Looks like we have a lot of knowledge in the group. I was diagnosed in August of 2011 during a regular check up. nice to know I am not the only one out here dealing with this.

[Susan61]

Hi Jean:  I think this is your first post, or I missed it along the way.  Let me welcome you to our group.  We would like to get to know you, and you will see we are just a bunch of regular people going through the same thing as you.

When I was first diagnosed, I did not know who to talk to.  Family and Friends gave a lot of loving support, but nobody including me knew what to expect.  I decided to look for a group so I could talk to others who knew exactly how I felt. I needed people who understood a side effect when I would mention it, and what to do about it.  Sometimes I just needed to vent because I was feeling sorry for myself, and then after talking to others I would change my frame of mind to realize I am not alone.  I was shocked at how many other CML patients were looking for the same thing.

So Welcome, and hope we get to hear from you often.

Susan

[JMGrad]

Hi Susan! Thank you so much for the warm welcome. I posted a few days ago - Im the newly diagnosed Xray tech. I do have a lot of questions that Im nervous to ask (dont want to overdo it) so I just dig around a little and can usually find the answer in previous posts. I love looking around becuase there are always kind words, laughs and lots of information! It gives me a lot to think about... Thank you for including me in your group

Jean

[Susan61]

Hi Jean:  Do not ever feel you are overdoing it with questions, or just talking to us.  My Gosh!!  There is so much to learn, and so much to be happy about when you see how you respond to treatment.  You will be able to get on here, and help other new people as they join with your experience to make them feel good.

      We have so many new people like never before.  Sad that CML is popping up all over, but how wonderful with all the latest knowledge by all these scientists and doctors that have come up with the best treatment for CML>

      I am going to have to write down names, and a little bit of information about each person so I do not get everyone mixed up.  I have done that quite often.  Keep posting, and so glad you joined in with us.

Susan

[JoshLee]

Hey Charlie,

       Sorry you had to become a member of this group. I am 27 and was raised in northern Wisconsin. I was diagnosed a little over a year ago and am currently in a complete cytogenetic response. This is a really good place to get questions answered. I've learned more hear than from my doctor. Be careful to use the knowledge you gain from this board in a productive way. I haven't been the best at that, but there isn't a manual on how to deal with CML properly. I have good days, and then other days, I don't do as well. Currently laid up with a nice little cold.....If you have any questions or want to talk about anything, you can PM me. You're in for a ride whether you're ready or not! Wishing you well, man! -Josh

[cwade61]

Thanks Josh! I seem to be responding well to Tasigna, and I've gotten a ton of info from the community. PS...Thanks for beating MSU this year for the Big 10 Championship (If you're a Badgers fan).