11 replies to this topic

[kellbell]

Hi,   I was just diagnosed about a month and a half ago.  I have been looking for answers to questions and have found alot of helpful information from here.  I was just wondering if there's others that have taken sprycel as the first drug and how it's working.  I notice people taking it if other drugs don't work. I have been on it for a little over 1 month and so far so good.

[jrsboo]

Yes, I was given Sprycel as a first drug.  I hit PCRU in about 3 months, and they say the faster and longer you get to PCRU, the better for long term success, with less chance of mutations or progression.  So welcome to the club no one wants to join! 

I was dx 9-2010 at a routine blood test.  Am looking forward to many more years!

Caroline

[mikefromillinois]

Hello, I too was started on Sprycel first in August of 2011.  It's working great - I'm hitting the "good milestones" quicker than average.  Side effects come and go but I consider them only a minimal annoyance.  My biggest gripe is the water retention, but I can live with it and as long as I am very careful with my salt intake it too is pretty insignificant.  Right now we have three main drugs: Sprycel, Gleevac, and Tasigna and there are others in the pipeline.  I was told that if applicable a patient can switch back and forth to different drugs without harm.  Personally I feel that if I'm having a good response with minimal side effects it's all good and there's no need to switch around.

Wishing you the best...

Mike

[cleocans]

I was diagnosed in July 2011.  I was started on sprycel.  I am progressing well.  At diagnosis I was at 24.695% at my 6 month pcr I was 0.151%. Like Mike my biggest problem is water retention.  I too have to watch my salt intake plus I take a diuretic.

Best of luck,

Kim

[kellbell]

Thanks everyone, It's nice to hear how others are having the same experience and to know that the sprycel is working for them.  I now have a wbc of 5.1 since a month ago it went down from 19.9.  I also have the water problem and found that after reducing salt from my diet it is much better.  Other than that I don't really have too many side effects either.  Thanks agian.

                                                                                                                                                                                                                 Kelly

[Txmom.4]

Hello, I am sorry for your diagnosis, but glad you found this site!  I was diagnosed almost 6 months ago and put on Sprycel.  At first, I felt like I had the flu, headache, body aches, fatigue....but all of that didn't last that long, maybe a week or two.  I had a rocky first month (found out I was very allergic to Allopurinol), but everything settled back down.  I, like others on here, have some problems with water retention.  It comes and goes, I use a diuretic when I notice some leg swelling or have some shortness of breath or chest heaviness.  I do have a very very mild rash that crops up from time to time, the dermatologist called it "hyperpigmentation rash."  Like others on here, my symptoms come and go, may be mild for a bit then get a little bothersome.  All in all, my numbers look very good, my oncologist just today said my last bcr-abl test showed I have had a total of 4 1/2 log reduction which he seemed very pleased with.  There are several people on this site whom I am so grateful to, the diagnosis hit me pretty hard, I am a mother with school-aged children, and everyone on here helped me through a very scary time.  I can't remember who told me that life will get back to normal, but it would be a "new normal."  That is so true, life still moves very quickly with my busy family, and I now have to keep up with a pill and get labs drawn from time to time.  I do feel tired and some of the symptoms I mentioned, but am so grateful for this medicine!  Good luck and if I can help, let me know.  I get on here about once a week or so just to check out anything new, etc. 

[OhRose]

DX in early Dec 2011, WBC 191. I was put on sprycel first line in mid Dec. Plts went down after a month so was taken off 100mg. Now am on 70 mg  for about 5 weeks so far, and bw is much better but hgb sticking around 10.2. I feel well,  have some fatigue and very little appetite. I am grateful for all the info on this site. I trust my onc and do not want to obsess about all these numbers, but do want to educate myself and stay informed as my own advocate. This is a new journey and I want to do well on it but live life fully and as stress free as I can. Thanks to all of you for sharing.

[Susan61]

Hi Kelly:  Welcome to our group. I am not on Sprycel, but have been on Gleevec for over 11 years.  You came to the right place to discuss anything you want about your CML.  I hope you get to know everyone.  There is always someone to help you out with any questions you have.

[Susan61]

Hi:  Welcome to the group.  I have missed some of the posts because for some reason a whole bunch of my L&L postings have gone into my Spam folder on my computer.  I have no idea what happened, but anyhow glad I am getting the chance to welcome you.  We have gotten a lot of new people this past year, and all I can say is you came to the right place.  Hope to get to know you as you post and share your experiences.

[OhRose]

Thanks Susan...how nice of you ^j^  I am not a big contributer but I have been watching the space and find it very helpful.

[Susan61]

Hi:  Most people do not contribute much at first, because your just learning. This is a whole new experience in your life, and has turned your life upside down in some ways to be told you have Leukemia.  As you learn what all your numbers mean, and you see yourself beating this disease you will be anxious to help others with your good news.

I remember when I was first diagnosed and I joined a group, I felt like I could not contribute because I did not know what to expect or understand how this disease works.  If you start posting, you will get to meet everyone.  You make some great friends, and you feel comfortable talking because they truly know what you are going through.  I would tell my husband and family things, and I would get support and love from them.  They just could not advise me, because they were learning right along with me. You will have days where you have questions that nobody but others who are also living with this disease can answer you.  I hope you do join in.

Susan