Just found this discussion board after being diagnosed with chronic phase CML this week. I'm still in a state of shock -- the diagnosis came about due to routine bloodwork that showed a slightly elevated WBC count. A bone marrow biopsy confirmed what the blood test showed. After much research and discussion with my doctor, I will start on Sprycel next week. I'm scared but encouraged by everything I've read and all the discussions I've found here. Is anyone else from North Carolina?
Newly diagnosed -- anyone from North Carolina?
Posted 01 October 2011 - 05:33 PM
Hey SB3 . . .
welcome to the club that nobody wants to join. Glad that you found this site. It is full of wonderful people who are here to help. I was diagnosed in June of 09. Started on Gleevec, but switched to Sprycel due to slow response and side effects. Sprycel has been great for me. . .no side effects to speak of (well, hardly any). Life does get back to normal after awhile, though it's a bit of a "new" normal.
My husband and I continue to snowboard, kayak, tour on our motorcycles, and though I'm exhausted at the end of each day, I teach middle school full time.
It will take you awhile to adjust, but you'll find that life does get back to normal. CML is a very treatable disease. . .not the death sentence that it was prior to 2001. I guess if we have to get cml, at least we all got it at a time where huge advances are being made in treatments.
Aside from welcoming you to our very friendly site, I would advise you to educate yourself, become your own advocate. . .get copies of all lab reports and become familiar with the NCCN guidelines so that you can monitor and be involved in your own treatment. Many oncologists are not familiar with cml, so you need to be sure that you know what you need to know.
Best of luck, and continue to check in and ask questions if you have them.
Posted 01 October 2011 - 06:28 PM
Hi: I see Marnie welcomed you already, and she explained everything so well. Welcome to our group. You will find that we are all very supportive of each other, and do not ever hesitate to ask any questions you have. Sometimes you could ask something that maybe someone else could benefit by also.
We have some great people on here who always keep up with the latest on CML treatment, and they are always ready to give you an answer.
Its true that before 2001, we had no real chance as there was not enough known about CML. I myself did the only treatment that was available back in 1998, and it did not work for me. I had to give myself injections everyday of Interferon, and you walked around like you had the Flu 24/7. I went into the clinical trial for Gleevec back in 2000, and for me it worked. The great news is that since Gleevec we do have other alternatives for those who could not tolerate the Gleevec or they got no response, and they switched to the other choices like Sprycel and Tasigna and did fantastic.
Know that you can live a long life, and do the things you always liked to do. The beginning is a little bit hard until your body adjusts, but I wish you well.
Please share a little bit about yourself, so we can all get to know you. Hope we hear from you soon.
Posted 01 October 2011 - 07:27 PM
I'm a 47 year old man, and was diagnosed on Jan 6, 2011... (funny how bad I am with dates, but remember this one, huh?).
So I've been on Sprycel for almost nine months. Fortunately, my side effects have been relatively minor. Most have been so subtle that I really didn't recognize them as side effects, except they "just didn't go away." (Itchy scalp, some bumps here and there on my skin, and I get really sleepy really fast when I slow down... that's about all I notice on a regular basis...)
For me, the mental/emotional battle has been a little more than I expected, considering that the Sprycel is doing what it's supposed to be doing. I have no recommendations or solutions, but be aware of this potential emotional "downer".
Sorry you had to find this forum; wouldn't it be better if we were all on the iwonthelottery.com forum? Then again, there are a lot worse diagnosis...
If it helps... keep us up to date on how you're doing.
PS I'm not in North Carolina. But just a few states to your southwest. Geaux Tigahs.
Posted 01 October 2011 - 07:39 PM
I am a 38 year old stay at home mom. I was diagnosed on July 7, 2011. I am on 100mg of Sprycel. The only side effects I have is water retention. Although annoying, especially if I have extra salt in my diet, I am very grateful that is the only side effect! I don't have a lot of information, as being newly diagnosed, but there are a lot of people here who do. I don't always post but I read posts here everyday and learn lots of new things.
Posted 02 October 2011 - 08:00 AM
I am from NC. I was diagnosed on June 30 after a routine physical. WBC 317k and HgB 7.1, and I didn't know I was sick!!!!!!!!!!!!!!!! I had plenty of symptoms, just didn't realize it because they built up slowly over a long period of time - probably 2 years or so. I am on Tasigna.
Posted 02 October 2011 - 02:50 PM
Welcome to our site. I wish I didn't have to say that but I just want you to know how happy I was to find this site. This wonderful group will help you get through anything. Like Susan said we are the lucky ones (it sure doesn't feel that way) but at least cml is controllable. I know that isn't much cosolation right now. And feel free to ask any kind of question modesty doesn't exist on this site.We have all been in the same place you are right now. If you need to vent this is the place to do it. If you have some side effects from your meds, Just ask anyone of us how we dealt with them. Just remember they are only temporary.But a lot of people don't have any side effects at all. I was diagnosed Aug.4,2007. I don't even remember that first month. But eventually I just did what I had to do. It was over 3 years before I found this board. I felt so scared and alone at first it's really hard sometimes we have just a yukky day nothing major just fatigue and you want to crawl under the bed and stay there.You can't stay there to long the dust bunnies will get you. And the next day you'll feel fine.That seems to be the way it works for us. We get no sympathy from family and friends after a while because we all look so normal and healthy. So don't expect a lot of presents they ain't coming. I'm still waiting and it's been 4 years. Most of us were dx the same way you were a routine blood test. No symptoms at all. Isn't that a crock?
If I'm gonna get sick, I at least want some warning so I can get depressed and sit around and eat bon-bons for a while and give up housework.
Take it 1 day at a time sometimes baby steps if you have to, but you are going to be fine. Get back to us and tell us a little bit about yourself we have people from all over the world on this site.
Posted 02 October 2011 - 04:46 PM
Thank you to all who have responded so far. Your comments are very encouraging. This is defintely a club I wish I never had to join but am grateful there is a discussion group such as this where we can turn to and connect with others who are walking the same path we are on. For a little background, I'm a 49 year old female with three children, two of whom are away at college. We have yet to tell the kids about my diagnosis as we want to wait until the two older ones are home for fall break in a few weeks so we can tell them in person. I plan to tell my extended family this week, as this knowledge is becoming too much of a burden for my husband and me to shoulder alone. My extended family has been through a lot in the last 10 months, though, and it feels almost cruel to add this to the pot. But that's life. My emotions have been on a roller coaster since my diagnosis more than a week ago, as I know you all can relate to. Everything's changed, and yet nothing has -- there are still bills to pay, work to do and a child at home to take care of. It all feels so surreal. And I haven't even started treatment yet, which will happen this week. I'm encouraged by what some of you have said about the side effects with Sprycel -- I'm hoping they are minimal for me as well. But regardless of how it will make me feel, I'm grateful that the drug exists as it gives me much hope for the future. For those of you who are in North Carolina, I live in Charlotte. I would love to connect with anyone local if you're willing.
Posted 02 October 2011 - 09:26 PM
SB, I am in the Raleigh area. It's a shame we don't live closer. I am 47 yrs old and have 3 kids. They are all still home - senior, sophomore, and fifth-grader. We had to tell them the day I was diagnosed because they knew something was going on. My family dr called and wanted to see me and my husband asap, then I had an oncologist appt that afternoon, and my sister came from MD that evening. I ended up hospitalized two days later, so it turned out well that we'd already told them. Do you know about the CML chat on Thursday evenings? There's a link about it somewhere on the LLS website. If you're interested but can't find the link, let me know and I'll send you the link from my email reminder on Thursday afternoon.
Posted 02 October 2011 - 10:39 PM
Hi:: If you are concerned as to how eveyone will react to your news, first tell them that you will be okay. Give them a postive outlook as to how CML is treated now compared to many years ago. Let them know that if you had to get this disease that now is the time to get it because of all that is known now on how to treat it compared to back in the 90's. You will be okay, and I know we will be getting some good reports from you with you progress. On days when you do feel under the weather or need a friend, just get on here and talk to us. We will get you through whatever is bothering you.
Most of the time its not the disease or the drugs, its the not knowing that bothers you. I always say that the THE UNKNOWN IS WORSE THAN THE PROBLEM ITSELF. We have a tendency to create our own problems just through worry itself.
Again, So glad you joined us. You will have some laughs on here too. We have some great sense of humors on this board.
Posted 03 October 2011 - 03:51 PM
My oldest daughter is a sophomore at Chapel Hill, so it's possible we could meet someday, either at a time when I'm going to pick her up/drop her off at school or I could combine a trip with a visit to you and her. It sounds like we have a lot in common and it would be nice to meet in person. With a senior at home, you may be in the throes of college applications. We went through that two years in a row (my son is a freshman at Appalachian State) and I'm very grateful that we're not going through it this fall! Seems like we have another challenge on our hands instead. Do you find the CML chats helpful? I'd be interested in learning more about them. If you want to communicate privately, my email is email@example.com.
I go back to the doctor on Thursday and expect to start treatment on Sprycel then. Keeping my fingers crossed...
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