Hello, still very overwhelmed with this diagnosis. I am a mom of 2 school aged boys, scared I won't be able to return to my job (nurse). I have medical knowledge but not in oncology. Also now concerned because after my official diagnosis, I posted on facebook, only to close friends so they could know and help with prayers/encouragement. I read somewhere on here not to post on facebook, do I need to delete? Do I need to delete whold fb account? Help! Starting Sprycel on Monday.
new diagnosis of cml, starting sprycel!
Posted 08 October 2011 - 11:43 AM
Do not fear. Welcome to the best list serve on the planet. Each of us has our own journey on the CML road, but the vast majority of us respond well to the TKI's. I started on Sprycel a year ago as a first line treatment, and I was able to acheive MMR within 9 months. We all have differing amounts of side effects. Please give yourself time to adjust and to allow yourself some slack to get used to living with cml.
We have our own resident expert, Trey, who has put together a number of fabulous articles and discussions for newbies and old hats. And just about everyone here has a wonderful shoulder to lean or cry on. We have some long timers (10 years on the TKI's), and we all seem to watch the medical community like hawks, keeping up on the latest research and reviews. Our little cancer is one of the best researched anywhere, and there is new information almost on a daily basis.
Please post often and question everything. We will respond.
Posted 08 October 2011 - 12:19 PM
You will find this board a great source of support and information. I'm about two months new to my CML diagnosis and feeling much about it today than I did a couple months ago. Hang in there - it gets less scary over time.
Wishing you good health and many happy days...
Posted 08 October 2011 - 06:01 PM
HI, Texmom. Welcome to the forum. Sorry you had to join. This is a great group of people, so you've come to the right place. I've been on Sprycel since January (on Gleevec before that), and am thrilled with the lack of side effects (other than fatigue). Life will get back to normal, though a slightly different normal than you've been used to. No need to fear.. .although things are awfully scary at first.
All the best,
Posted 08 October 2011 - 07:24 PM
Nice to see another nurse. I am an RNFA in the gen surg/bariatric speciality. I got my news from routine bloodwork in 2/2011. Was started on Gleevac 400qd and the side effects were not at all what I could deal with so for the past 3 months I have been on 300 mg QD. My WBC's have hovered right around 2.7-2.9 and my H & H is 29 & 9. Seem to always be the same. My BCR is not what we want but it is early.
As for work, I have been able to work right along. I found out my results on a friday and worked that monday. I changed my work days to 4 ten hour shifts instead of 5 8's because I never got out after 8. I usually work 40-48 hours a week but I now get 3 days off a week and I love that. Not only for rest but I get all my appointments in without missing work. Needless to say I am always tired, very tired. I am hanging in there hoping that it will get better. Work and sleep is not my idea of a great life.
As for telling people, once you tell one person you have no control over who knows. Most of my friends know, and all my family. I was hesitant to tell my 92 yr old mother, she is well and lives alone next door to my sister. I did tell her once I had a grip of it. I still have trouble grasping what has happened. You read that this cancer is taken care of by taking one little pill. I do understand the concept but what are the long term effects of what that little pill does to my body concerns me. I am very new with all of this myself. I keep reading the posts and it has made it easier.
I was telling my husband, If I had a cancer that could be cut out, chemo and radiation and then get the all clear sign and go on.....this is not that way it seems to go on forever just lying in wait and there is no end I try not to think about things like that but I am human. Hang in there and so will I.
Posted 08 October 2011 - 08:15 PM
Welcome to the discussion board - just check the privacy setting on your FB. I tend to to use Messages when I talk to friends about things - it is like sending an email and things are more private then posting directly onto your wall. If you've posted things on to your wall you can delete them if you're worried. You can also set yourself up that you can't be "searched" for - again have a look through the privacy settings.
With Billie's warning - I think her account was hacked and I don't really know what her security settings were like on FB.
Sprycel is a great drug for hitting CML - comes with a few side effects for some people and hardly anything for others, it comes down to the individual and the way their body reacts to it. Most of us look forward to a normal life span with the drugs. I'm on Gleevec (the earliest TKI), but there are a lot of people on here taking Sprycle who will be able to guide you through any issues.
Your world will spin for a while, but eventully it does slow down for most of us, this board certainly helps.
Posted 08 October 2011 - 09:53 PM
Thanks to Caroline, Mike, Marnie, Loreta & Gerry.....Your words of encouragement mean so much! I was having "routine" lab work and then I was blind-sided. I will definately use this website, nothing like communicating with those who have the same thing. I hope after I start my meds, hopefully I will respond and work through any side effects.....pretty scared, so much unknown, but I think this place will help.
Posted 08 October 2011 - 10:09 PM
Thanks for all the info, looks like you have put alot of work in gathering this information. I have been on the internet since the day I went home from work hearing my WBC. I knew it was a leukemia, had to wait for tests to see which one. I am a nurse, but not in oncology or hematology, funny, I have years of experience but this kind of field is so vast and different from my speciality that I feel I have my homework cut out for me. Also, when you are the patient and not the nurse, it is completely different, my brain hasn't worked right for the last week or so. Thanks again for the positive message & up to date articles.
Posted 09 October 2011 - 08:12 AM
I think a great deal of us were "found out" by routine blood work. It was that way for me too. Just went for my annual exam with a new pcp, and he ordered bloodwork prior to the appointment. They called back the same day and asked for another stick. I just thought they had dropped it or something.....the next day my new pcp patted my shoulder and told me I might have leukemia........WHAT??????
Alas, it was true.
It does shatter your life and your perception of what your life will be. For a while. You will develop a new normal. You will see things more clearly, and have your priorities sharpen a bit. There are still moments now, a year into it, when I can be stopped by the thought of "what if". But for the most part, while it is a very different life for me, it is a good life. I turned out to be one of the super sensitive ones. And I have a lot of side effects, most of which are kept under control by a plethora of supporting drugs and creams. I am more aware of the flowers along the side of the road, I have less time or patience for drama, and I am less likely to worry about making money as much as making sure that those I love know it.
Each of us has different reactions. Both physically and emotionally. Be sure to be gentle with yourself. Don't ask too much of yourself. Make sure to surround yourself with supportive loving friends and family.
You can do this!
Posted 09 October 2011 - 12:12 PM
What a great way with words. I too have noticed that I really do not care about the drama at work. I actually find myself smiling as I walk away. My priorities have changed and all for the good. I will be more gentle on myself I like the wording of that.
Posted 09 October 2011 - 08:32 PM
When I was first diagnosed, I left the door unlocked and made sure my 3 yr old knew how to call 911. I was terrified my life had changed forever. It did, but I have been able to get back to most of the things I used to do in my old life (with the exception of mortality now on the front burner instead of way in the back). The CML dx is very overwhelming, especially for many of us who didn't even know we were sick (mine was found at my yearly check up). I have been on Sprycel for 13 months. I do not notice any side effects that interfere with my functional life (I have low blood counts, but this may or may not be due to the drug). Being newly diagnosed is very terrifying. It takes some time to adjust to this change in your life. But I think you will be able to keep on working. I had a 3 year old and a 1 year old when I was dx and I was able to take care of them full-time. Now, I chauffer my 4 yr old and 2 yr old to pre-school, do the shopping, cleaning, cooking, run them to various places to play and have fun, etc. I find I am able to keep up with or even do better physically than those who do not have leukemia. I am even working out again.
I am glad you found us. I wish I had known about this group in the beginning. It would have saved me a lot of hardship trying to digest a lot of erroneous info not only found by me, but given to me by my ex-oncologist.
Take care. I wish you a smooth journey and a quick trip back to health,
P.S. About Facebook, since I plan to enter the work world again if all goes well, I don't want anyone commenting on my wall or whatever asking me how I am feeling or mentioning anything about the CML. In a perfect world, employers, etc. would never discriminate, but we as a society are not there yet. I have a page, but no one can see it unless I let them. Nevertheless, I don't use it much because I do not feel free to do so.
Posted 09 October 2011 - 09:24 PM
I'm so glad you found our site right away. It took me over 3 years and I felt so alone when we first get dx we're all stunned and given pills to take and a bunch of brochures to read. At first we have a lot of ups and downs and some of us have annoying side effects that do go away as our body adjusts to them. We have all been through what you're going through so don't hesitate to ask any questions at all.
I have been 4 years since dx. I'm on Sprycel also. At first I got some nasty headaches for about 2 weeks but they ease up and go away. My biggest problem is fatigue but I have a couple other health problems so I take meds for them so that makes me tired also. Plus I'm older than most of the people on this site. But you will be okay. This is the most wonderful support group you can find. We joke around we vent nothing is embarrasing and if you have a problem with a dumb side effect there is always someone here to give you advice on how to deal with it.
I'm the one who had the problem with FaceBook because I,m stupid. I'm a computer idiot as anyone can tell you. And I'm way to trusting. when I got my first computer 6 years ago I learned to turn it on Yaaa! Then I learned how to lock it so I couldn't get in. Then I learned how to join different sites that wouldn't let me log in when I went back to them. Then along came the biggie E-MAIL I won't even go into that. Finally I bought some pc games and played them for about 2 years. When I finally figured a few things out I just gave out to much personal information. I never did any banking or buying online so I figured why would anyone bother me. I joined facebook about 3 years ago and gave my full name and e-mail address I did the same thing on every site I joined even this one. I just got this computer 4 mos ago and I'm having a lot of trouble with it. 2 weeks ago someone hacked into my facebook account and asked the singer Susan Boyle for money because I had leukemia and my meds are $26,000 every 3 months. And they said I joined the pink ribbon society (breast cancer) which ment I was asking for more money. I was mortified. Now I can't delete Facebook or get my personal info off this site. I never should have put that much info out to begin with. I took this computer back last week they can't get this info off either. I hate windows 7. There are more and more hackers every day and I was told just don't use facebook anymore and it will eventually go away bull. I'm trying to get help from my isp and lls. But this is totally my fault just don't put up all the info like I did and you'll be fine. When I bought this computer they installed another security system then what I had before and I paid $200.00 more for it. I'll get it figured out eventually.
Anyway that's my problem You just concentrate on yourself and the strength and prayers you get from your friends on facebook and from this site.Facebook is safe I'm not.
Posted 09 October 2011 - 09:50 PM
Thanks for your post, I am sure you are fine with a computer....and everyone has to start learning & sounds like you have! I really am overwhelmed with the responses I have received. I am so thankful I found this site, makes me feel a little better hearing from real people who have this condition and are on the medications i have heard so much about. I will post often, thanks very much for the information.
Posted 09 October 2011 - 09:56 PM
I have just read your post, thank you for your kind words and experience. I too am a busy mom and work full time. This diagnosis has literally turned my world upside down, just as I am reading it happens to all on here. I don't look sick, I don't feel sick, same scenario of many I am finding on here, that's what has really blown me away. I have had many ups and downs, and am trying to not get too freaked out starting this medication, just really nervous of the side effects and how it will affect myself and family. I am grateful, absolutely, just really scared. I am leaning on friends, family & God. I am so glad I found this website, it has helped hearing from you all. Blessings to you!
Posted 10 October 2011 - 09:10 AM
It's a crazy new world for you now, but know that the odds are with you that things will be alright. You will almost certainly survive this and the hardest part will likely be dealing with any side effects that come from the treatment. Most of us get by. I'm 38 with two little boys, sole provider for the home. I still work and do everything I used to do, I'm just a bit more tired and I worry more about my health insurance, but otherwise, the days just roll by the way they used to. Take time to get used to this, don't be hard on yourself, but also try not to feel too bad for yourself because while it may feel good for a bit, it doesn't seem to get us anywhere. We have a chronic disease, it sucks, but we get to keep going, so we take it for what it is.
As far as Facebook, anything you post publicly will be out there for anyone who has access to your wall to see. You may not want that. There are ways to try and keep things private, but Facebook has a tendency to change settings and the reality is that once it is out there, it's out there so you may want to exercise restraint. Depends on who you are. Some people embrace their cancer diagnosis and it becomes a major part of their life. Others try to keep in the background. If you want to communicate with people on Facebook who have CML and want to keep it private, there is a closed group that you can join and the messages are more "private" but again, once you post on the web, it is out there. It's not like anyone can't join the group. They don't ask for a copy of your CML card. If you want to communicate with people electronically about your situation, you could create a caring bridge site. That has been helpful and reduced the need for my wife and I to have to answer questions every few months when I get my blood work done. I just post to the site and my extended family can read my updates and know how things are going.
Best of luck with the beginning of your treatment. As others have said, things seem to be hardest at the beginning and then they tend to settle over time. So hang in there and try not to let your mind get too far ahead of your reality.
Posted 10 October 2011 - 09:36 AM
I am right behind you in diagnosis and treatment. I was diagnosed about 2 1/2 weeks ago, also after a routine blood test. I didn't (and don't) feel sick, other than being tired. But as a mom of three children, I'm always tired, so I didn't really think anything of it. Like for so many others, the diagnosis was a complete shock. I started Sprycel two days ago and so far, so good. I know it's much too early to tell what, if any side effects, I'll have. But I do feel grateful that treatment has come so far and I can take a daily pill, rather than having to face other more extreme and invasive treatments. I found this support group within a week of my diagnosis and it's been more helpful than I can say. I've already connected offline with a few others and will even meet someone in person in a few weeks who's been living with CML for 11 years. Connecting with others who have traveled this path before me and can offer support, advice and encouragement is truly a godsend. You've come to the right place.
Posted 10 October 2011 - 12:39 PM
Thanks so much for your reply. It is so good to hear from someone who is in a similar place (though I wish it weren't either of us!). I am waiting on insurance company to ok med, then start sometime this week. I feel like my life is kinda in limbo right now, and anxious to get started so I will hopefully respond and get used to life on this medication, lab tests, etc. I too was kinda tired, but i work full time, have children and very busy! So when the doctor asked about fatigue, I thought to myself, yeah, I don't know many busy moms/dads who aren't tired! Anyway, I will continue to post on here, it feels like a good place right now for encouragement & listening to people who have more experience. Thanks again, blessings!
Posted 10 October 2011 - 04:20 PM
Hi Txmom, welcome to a wonderful forum where people are so supportive. I will never forget the day I was diagnosed and as time goes on and you see how well the TKI's work, the odds are that you will do well too. The fear subsides with time and life goes on but I found that I appreciate so much more. I am a diabetes nurse and knew little about oncology too but after reading the posts, you learn so much. I still work and live a relatively normal life with the exception of a few side effects we all know too well from Gleevec. Welcome.
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