CML, who has this cancer, and how long?

Hello lucky few,
I'm just trying to find out if anybody else is taking the (chemo in a pill) for CML, and for how long you have been on it? And if the first (chemo pill) the doctor put you on worked.

Thanks,
Chip

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Hello MrChips · If you are looking for other CMLers to talk with then your best bet would be on Facebook where there are now multiple groups. If you are not on Facebook then the CML2 Group on Yahoo is another good resource for connecting with others.

You can also find a lot of information and support resources from The National CML Society at http://www.nationalcmlsociety.org/ They work with many patients who have lost response to one or more of the CML drugs, and they are familiar with all of the approved drugs and the new ones now in the pipeline. There's also information on the Therapies page on the NCMLS website. There are many reasons to be optimistic today and I hope you will learn more about the new therapies.
Take care,
Pat

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Hi Pat,
Yes, I'm trying to find out more about the stage I'm at with my CML. thank you for answering me and I will go to the website that you have suggested.
Have a great day , and thanks again for the responce. I'm not on FB and will see what I can find.
Thank you,
Chip

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Hi Chip - CML can be hard to understand because the treatment is markedly different from the more traditional cancer treatments. We do not have stages, we have phases - Chronic, Accelerated and Blast Crisis. Ideally you want to stay in the chronic phase and not progress. If you are having issues then it is vitally important to be seen by, or have your local doctor get a consultation with, a true CML expert. CML patients regularly travel across the country to do this. Since the disease is so rare community oncologists often do not understand the subtleties of treatment or have access to new drugs that don't yet have FDA approval. There are more reasons today than ever before to be optimistic about living a long life while managing CML but to do so you have to work with a medical team that is on top of the most current information.

Another good resource is the CML Health Center on Patient Power. This interview covers many of the treatments and may have some that are new to you and are important to know about: http://www.patientpower.info/video/an-expert-explains-positive-news-on-cml

Wishing the best for you,
Pat

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Hello Pat,
I looked at the first website that you suggested, and yes, it has all the information that I need. I've had CML for 5 years now and never really wanted to know to much about it. Thank God I have great Ins. And have had the same doctor since I found out I got it. The 3rd chemo pill that I have been on had stopped working, and how I found out was, I started getting really bad sores on my hands, and my arm. I found out it is called "Sweets syndrome" and lucky me they had just approved a 4th chemo pill that I started 5 days ago, so I just have to see what happens. This is why I've started to find out more about my CML.

Thank you, Pat!
Chip

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Hi Chip - Essentially the treatment for one rare disease has led to another rare disease. There are some cases of Sweets Syndrome with CML in the literature. If you are interested in the clinical journal reports you can find them with a Google search. What this tells me is that it really is critical that you get expert medical help. I see you are in California. Neil Shah at UCSF is one of the top experts in CML so you may want to look up information about him. Don't give up - you have come this far for this long with a formerly terminal condition - and it will take some time and work but you can look out for your own best health and I hope you will so you can keep on enjoying life.
Take care,
Pat

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Hi Pat,
Giving up i just can't do. I look at my sweet little angels > my daughter "Skylar" whom is 13 teen and my son "Trent" whom is 12 years old. When I let my mind go to places where it does not belong I start thinking ( what if ) and then I think about the pain, sadness, how broken-hearted they will be and they have already gone through their mother and father getting divoriced, and she got remarried 6 months after we split up, and moved him in. Thank God he's a pretty good guy and was married at the time as well. He has 3 boys and he moved here from Oregon for a job as a fireman-pilot, and my kids like him. He sees his boys when he can and they also come here to Calif. My kids love his boys and they are all great kids. It took a while to get the anger out of my mind, but she was at the doctors office when this jerk Dr told me I had 3-5 years to live, and he said it like he was giving me the weather for the day. (I never saw him again)
I started this new chemo in a pill about 6 days ago, and it's made me pretty sick, but this time this chemo pill is going to work, so I can tough it out, because I'm a tough guy..lol..I'm glad I started finding out more about my (CML) I've been able to meet people, like yourself, that understand what we're going through, and wow, there are people who don't run from you, and really care. AWESOME!!!
Listen Pat, how are you doing, and feeling? I have not looked up yet where you live, and also any kids, and all that good stuff?
It started to rain last night and I love it, and so do all the animals that we have in the back yard. My girlfriend has a big heart, and treats the animals very good, just like everybody in her life. Her husband of 25 years died 5 years ago of Lung cancer, and she has never once said anything about leaving me, or being mean, just helps me out, and she knows how much I love my kids, and my kids love her too.
Pat my memory stinks, so excuse me for being Mr not remember anything guy..:) I hope we talk soon, and you keep me posted on your health, or anything!!!!!

Your friend,
Chip

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Hi Chip - Glad to hear your positive response and learn more about you. I am a two time cancer survivor. Had breast cancer at 35 and had been cancer free more than 20 years when I was diagnosed with CML in 2009. I reached PCRU (best response possible) at 18 months and have remained there ever since, and realize how fortunate I have been. I also know that I could develop a mutation and lose response and stay on top of CML developments so I can choose the right new treatment option should I need to. I live in Phoenix, Arizona and was born on 9/22, the international awareness day for CML because the disease is caused by a change in the 9 and 22 chromosomes. I volunteer for several cancer organizations and I also cover cancer in my work as a health journalist. There is now a lot more information available to help CML patients better understand the disease and treatment, and as a community we are also making strides in developing more support to help people better understand how to have a higher quality of life while living with lifelong treatment. The longest living person I know about is a Canadian who has had CML for 35 years, and there are many others who have lived with CML for 10, 15, 20 and 20+ years. We are growing in number every year, which is both remarkable and wonderful.
Take care,
Pat

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Hello Chip!

I am so happy to have popped in this evening to read a bit of your latest news. Is Pat from Phoenix not an Inspired & informed guardian angel of success in living with and providing critically important information and resources?!!

I hope things are going well in all areas for you Chip; please don't think I've forgotten you, my cold turned into kind of a heavy upper respiratory thing and wiped me out for awhile but I'm so much better and hope to get back to connecting with some folks here on Inspire!

Sweet dreams, my friend.

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Hi Barb,
I am so sorry you're not feeling good. You need to rest and take care of yourself, and I know you have not forgot about me, but that's sweet for saying that.
I'm finding out that there are some caring people on this website, and what's nice is everybody knows what we're whatof us are going through. About 5 years ago I started going to wellness class for people with cancer. I didn't really get anything out of it, because it was very sad, and people were dying all the time. After that class I never wanted to know anything more about my CML and what was to come. As of 10-11-12 when I started getting the sores on my hands "Sweets syndrome" I thought it was time to find out more about my cancer, and reaching out to ya all. It's really nice to have such a wonderful website that we can go to for support, and talk to people that are going through the same fun stuff as me..I'm like a 15 year old kid, so don't get mad at me when I kid around. Laughing, and having fun is what makes this a little easier. I just messed up the top of this message when I tried to fix a word, so yup I'm not that great on the computer. Anyways I thank you for all the support, and being a friend, so don't stop..lol
This new Chemo I started 26 days ago and I had to look to see on the bottle, because I can't remember something's, and it sucks. At least I can wrap my own X-Mas gifts, because I won't remember what I got myself..HAHA..4 days ago I either started side affects on the chemo, or I'm just sick. I feel like I have the flu, but 10 times worse. I have a really bad chest cold and I'm wheezing really bad, but no fever. I just wanted to see if my nurses..lol..knows anything about this. I think I'm going to the doctor today to get some x-rays of my chest. I had pneumonia, and walking-pneumonia before...it's a good thing I have spell check, 'cause that's a big word for me.:) it's does not seem to be getting better, and when I had it before I waited to long and it got really bad, and I don't want that to happen this time.
I will keep you posted and thank you so much for listening to a knucklehead like me..:)

Big hug, and big smile,
Your friend,
Chip

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Hi Pat,
Wow, you have been through a lot and I'm sure it has not been easy. I hope you have people around you that love, and care about you, besides us. That CML website has a great deal of Info, and a guy named Greg has been emailing me, and I guess they have a panel of Doctors that discuss, and get answers for you, or me about my CML. I think that's all they do is CML and I've told him the Lastest because he ask and said he'll be taking all my Info to this panel of Doctors..Yahoo
I think you can read what I wrote Brab, so that's what's going on with me right now. I read stuff on the Internet about the Sweets syndrome and it doesn't look good, but I will be around for a long time, 'cause my kids will be needing new cars when they hit the age. They are 13 teen and 12, so let's see, 2 more years, 15 is when they can get a permit to drive, but then I need to be around to see them graduate High school, oh and then collage, so I'll be here for along time..:)
I hope you have a great day at there in Phoenix, and thank you for all the Info!!!!!!!

Your friend,
Chip

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Chip,

Thanks for your loving note. Being such a loving guy is all you need, you don't have to have a perfect memory, you don't have to be a perfect speller, you don't need to ever apologize for any self-thought of imperfection, this is an imperfect world, otherwise we'd not be on this website discussing disease!

Please get to the dr., your symptoms are very much like mine were!! No fever but you feel like you do, heavy upper respiratory discomfort with a tight, dry cough! Hope to hear what they give you for it.

Talk soon!

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Hi Chip - Glad you are in touch with Greg Stephens, he is the executive director of The National CML Society, which is the only nonprofit organization in the US solely dedicated to CML. I have used the "Ask the Expert" service and it is excellent. The NCMLS is able to get information directly from the top CML doctors to help people in need. I got better information from this service than from the "experts" in my community and it was invaluable - when you are a two-time survivor you have additional issues that have to be taken into consideration. I am a volunteer for NCMLS, and work with Greg on many projects, including the "Living Well with CML" live programs that are held in many cities. If one comes near you I will be sure to let you know as it would be great to meet in person.
Take care,
Pat

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Awwww, thanks Barb, very sweet of you!!!!
Now is this happening to you right now? Respiratory discomfort, because that is what I'm feeling now, and it gets really bad at night, and then during the day it's not as bad, but my chest, and the cough still are bad. I'm not wheezeing as much and I can breath better. I just don't want to go the Hosp., if it's just a chest cold. I guess it's better to be safe then sorry, because last time I had pneumonia I waited 5 days with a Temp. Of 103 and made it worse. I don't have a Temp. right now, and that's why I think I'm ok..

Big hug, big smile,
Love your friend,
Chip

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Hi Pat,
I don't know how I missed the message you sent, but better late then never.
So that's great that you know Greg, because I gave him a lot of Info about my condition and pretty much all about what's been going on with my CML, and then I said to myself, self you really don't know who this guy is, now I feel better that you know him as well. He seems to be a very nice guy, and helpful too. Greg only deals with CML? Or other cancers too.
I'm going to the Hosp., right now just to get an x-ray on my chest. The last few days I've had a really bad chest cold, and have been coughing, and wheezing, but Greg did say this could be one of the side affects from my new chemo pill. I just don't want to get pneumonia again, because the food stinks in the Hosp...:)

Thank you,
Your friend, and CML buddy,
Chip

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I'm so glad you're going to the hospital, Chip. I guess we can never assume anything is NOT related to our condition or treatment. It seems hard to remember this fact. My cough was tight, worst coughing at night, coughing during the day usually after laughter! Felt like I had a fever but couple times I checked & did not, just the clammy, hot feeling. Never had a full head cold, started in throat, more like a sinus infection, finally cough loosened up a bit and then returned to tight with extreme fatigue and total loss of appetite. I felt so lame, I thought what the hey, I'm such a baby! Felt I'd been body slammed, just knocked the wind & energy from me. Honestly, a cold was never like this deal.

So who knows, just starting to get some energy back, so that is my very good news. Will be waiting to hear what you learn, dear friend.

Pat from Phoenix, what a blessing you are here. Thanks for all you do and may you continue to survive and thrive for a very, very long time!

Wishing this for all here on Inspire and everywhere in the world!!!

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Hi Pat,
Well I didn't go to the doctors office Yesturday, because my Genral doctor was not available, and I started getting a Temp of 101.5, and as of 10 minutes ago it was still the same..(101.5). I'm going in no matter what this morning. All of the systems you describe above sounds like what I have. I'll let you know when I get back.

Thanks Barb,
Big hug, and big smile,
Love your friend,
Chip

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O Pat,
I hope everything is well with you, and I don't know if I've ask you already, but how long have you been dealing with CML? I just can't remember if we've talk about this before. I'm starting to get the hang of this website,.......not, but for the most part I think you understand what I'm trying to say.
My chest cold has got worse and I'm heading to my doctor in about 30 min., so thank you for all of the outstanding Info that you keep on providing to me with. I will talk to you soon, and will have to throw a CML block party, with a petting zoo..lol

your friend,
Chip

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Hi Chip - Glad you are taking care of yourself. There are various respiratory illnesses going around this time of year and it's important to take care of them early. I would also encourage you to do a search for information on the specific CML medication you are currently taking on the manufacturer's website to get a better understanding of the drug, the side effects and so forth. Knowledge is power, and this will help you.
Take care,
Pat

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Hello Pat,
I will do just that, but my doctor does not think this is not caused by my curent Chemo medication that I've just started. I will be seeing him today, and as of this morning I'm starting to feel a little better...YAHOO!

Thank you, Pat,
Have a great day,
Chip

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I think I forgot some letters "O" and it was supposed to be "Hello" lol

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