Hello to all. I'm Mike. I live in the Chicago area and will turn 60 in a month. Got my early birthday present in July when I was diagnosed with CML. It's been a couple months now and I'm still trying to "process everything". This site is great and I plan to do much learning here. My thanks to everyone who contributes here! I also plan to contribute once I have information to share. Right now all I have is my Irish sense of humor and a long-standing faith in God that has certainly been "turbo-charged" by my diagnosis. I would enjoy getting to know anyone in the Chicago area with CML. Bye for now. Wishing you all good health and many happy days... Mike
Newly Diagnosed - New to Site - Anyone with CML in Chicagoland?
Posted 27 September 2011 - 09:53 AM
Posted 27 September 2011 - 10:27 AM
Welcome Mike - good to know you, although I wish it could be under different circumstances. I'm in the North East in CT but I lived in the Chicago Area (North West suburbs) for a few years back in the late 90's, it's a great town.
I was diagnosed in July 2010 so it's been a little over a year for me now. I'm 38. So far things are going pretty well, I'm taking Gleevec 400mg daily and my response has been good so far. Side effects are manageable, although annoying on some days.
I think it is hardest at the beginning as you get used to the idea. Over time it does seem to get a little easier.
Hopefully - things are falling into place for you and you get to settle down soon.
Best of luck and look forward to hearing from you on the board from time to time.
Posted 27 September 2011 - 11:52 AM
Hey, Mike. . .welcome to the site, and sorry that you had to join the club. It will take you some time to adjust, but life will get back to normal, though it will be a slightly different normal than you were used to. This site is a great source of support, so be sure to post any questions or comments. Lots of great people here!
Posted 27 September 2011 - 12:14 PM
Mike, Sorry to be meeting over CML but you have came to the right site for information and fellowship. Where are you being treated at in Chicago? I live in Indianapolis, IN but travel around once a month but getting far less these days to University of Chicago (Hyde Park area) to see my oncologist. They officially made my dx and when I met the staff I knew I was well taken care of so I just stayed.
Posted 27 September 2011 - 12:43 PM
I am being treated at the Cancer Center affiliated with Central DuPage Hospital in Winfield. It's in the far west suburbs of Chicago, probably about 40 miles NW of the University of Chicago.
Thank you for your reply. Stay well....
Posted 27 September 2011 - 03:06 PM
Hi Mike: Sorry you could not have joined a better club, but you will be glad you joined us here on the CML Discussion Boards. We are all very supportive of each other. You did not mention what your coarse of treatment is. I am on Gleevec 400mg. one a day. We have some who are on Sprycel and Tasigna.
Ask us any questions you may have, and someone is always ready to jump in and help you out. We are from all over the place. I am from New Jersey.
I have had CML for 13 years this December, and we have a lot of newcomers like you. You will adjust to it all, and that might sound odd having someone tell you that you will adjust to having cancer, but you can Live With CML.
You said you have a great faith in God, and in my book thats the first and most important step.
Hope we hear from you again soon and often.
Posted 27 September 2011 - 03:27 PM
Good to meet you virtually, though I wish it had been under more pleasant cirucmstances. You have come to the correct place--the board consists of wonderful people who are all on the same journey, albeit, at different stages in this journey. Please feel free to use this to ask questions and clear any doubts. We have a lot of dedicated and extremely knowledgeable people here.
I was diagnosed with CML in 2009 and I live in the western suburbs of Chicago. I do not post regularly on this board, but please let me know if I can be of any particular help.
Posted 27 September 2011 - 03:47 PM
Hello Susan and thank you! Once my white count was brought down to about normal my doctor started me on Sprycel, 100mg daily. After a month on Sprycel my platelet count dropped to 50,000 so my doctor told me to stop the Sprycel until the count looked better. That pause lasted 5 days and I just restarted today. So far I haven't had many ill side effects. My only real "gripe" is that I can't tolerate the sun or heat in general any more, but otherwise I really feel great.
Bye for now. Stay well....
Posted 27 September 2011 - 04:03 PM
I was also diagnosed in July. This site has been great for all sorts of question, answers and support. Like you I don't have much to contribute yet. I am also on 100mg of Sprycel. The only side effect that I am experiencing is water retention. I really have to watch my salt intake or I can balloon up pretty quickly. Other than that life goes on normally for me.
Best of Luck,
Posted 27 September 2011 - 04:35 PM
Funny you should mention salt. I pretty much gave up adding salt to food several years ago but now (on Sprycel) if I eat food that that has it's own salt so to speak I do hold a little water (2-4 lbs) until the salt runs it's course - usually a day or two.
Wishing you the best, stay well....
Posted 27 September 2011 - 04:45 PM
Welcome Mike! Indeed sorry you have to be here, but it really is a great place! Peace be with you.
Posted 27 September 2011 - 06:18 PM
I suppose that you love painting. Take a break of reading medical topics and
go to that link: CMLer's portofolio
But If you like more music, then go to:
Welcome to our group
Posted 27 September 2011 - 06:32 PM
Welcome, Mike! You found a great group of people on this discussion board.
I checked out the "turning 60" scene last Sunday for you. It was twice as hard as turning 30 but I seem to have survived the experience.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 27 September 2011 - 10:38 PM
Hi.....I live in Elmhurst and see a doc at Loyola In Maywood. I've been on Gleevec for 5 years.....recently changed to four small pills a day, and it has changed my life! I have gotten some of my old life back! I turn 55 this November......happy to be working ---- mornings only as the fatigue was too much for me. Welcome to our club! Lots of nice people here!
Posted 28 September 2011 - 07:31 AM
Thank you Gilles. Merci! Truly beautiful stuff - very powerful. Stay well.... Mike
Posted 28 September 2011 - 03:45 PM
I too was diagnosed CML in July (15th to be exact) and am in a spin at the moment. I've been put on Tasigna at 150mg a day as side affects were too much for me. I'm 46 years old, female, 110 pounds so the 600mg a day was a bit over the top if you ask me. I feel ok except being tired and also tired of people telling me I look good after losing 14 pounds!! Anyway, glad to be part of this site as there is a lot of info here!
One more question for everyone: Has anyones Liver enzymes raised with taking Tasinga and what exaclty does that mean??
All my best...... Gina
Posted 28 September 2011 - 04:02 PM
Gina - Rising liver enzymes when starting Tasigna is something we see on here from time to time, so it is not uncommon. I think it is something that has to be watched. If it becomes an issue where they are not going down, some people take a break to let them come down and then go back on. For some that does the trick, for others they find it is necessary to switch to one of the other drugs. Fortunately, there are a few to choose from today and they all appear to be pretty effective.
It is hardest at the beginning, so try to take it in stride and not get too stressed out. Over time things will settle down and you will learn to live with this unwelcome companion in your life. CML is a pain, but it doesn't have to ruin your life.
If the liver issue persists, post a new thread and others who have more direct experience with the issue will respond to you with their advice.
Best of luck.
P.S. as for people making stupid comments, prepare yourself, because they will be forthcoming. One of the favorites is "but you don't look sick".
Posted 28 September 2011 - 07:31 PM
Thank you for your words of encouragement as I so need them right now! I will keep checking this blog daily, there is so much info here from people who have the experiences and I appreciate everyones input! thank you again and God bless
Posted 28 September 2011 - 07:49 PM
Welcome, Gina. You have found a great place.....where you will be understood!!!!!!! In earlier postings, I have gone on and on about people thinking I look great------so I must be fine-----and should continue doing all the things I used to do!!!!!! But....now I am smarter, and do the things I want to do...that has been a good side effect!!!!! ;-)
Posted 28 September 2011 - 08:40 PM
Your experience is fairly standard for Tasigna, which often causes an initial spike in the liver enzymes, most often followed by return to normal over the next few months. So a Tasigna break is not normally required unless they continue to rise over the next few months. But you should see a drop in a couple months.
Most docs don't worry about the liver enzymes unless they are about double normal levels. Then a drug break might be needed.
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