Hello Everyone! I am so grateful I found this site. I was recently diagnosed on election day after being told I needed to go to the hospital for a blood transfusion and the way out of the doctor's office them letting me know that I might have CML. I have been in good care since and promptly fired that doctor and found a new one the next day. My diagnosis was confirmed yesterday and I have been taking hydroxyurea since last week with my doctor starting me on Sprycel 100mg this coming Friday. He told me that he originally wanted to start me on Gleevec but because of my spleen size and my WBC of 387.0 he thinks that Sprycel is the way to go. I am scared and anxious. I have had no side effects on hydroxyurea and actually my spleen size has cut in half since last week. I know I have a lot of reading and watching to do on this site, but I wanted to take a moment and introduce myself and if you have any quick suggestions or recommendations, please feel free to share. I am a psychotherapist and professor as well as a single mom of a 10 and 13 year old! Sincerely, Colleen
You are here
Newbie Here! Diagnosed on Election Day :(
Hi Colleen,
I am sorry you have joined our group but glad you found this site. I too am in the mental health field. It is an added challenge when your job is to provide support to others while you tend to your own crisis. I have been on sprycel 100 mg for around a year and so far so good. For me the mental challenge has been the toughest part. You will find a wealth of knowledge and experience on this site. PM for support/questions!
EB
Hi Colleen,
Welcome to the club no one wanted to join! Seems we have a recent influx of new diagnosis so although uncommon it’s common so to speak.
Your panels look similar to mine. Your spleen will return to normal size fairly quickly and so will your blood panels.
Once you start TKI you can mostly put this all behind you. You won’t believe it yet but you will in time realise although crap you’ve e probably had a lucky escape with it being CML. For the vast majority this is nothing more than a chronic illness. Although it does have the C word attached to it our treatments are so unconventional and we are for the most part very very lucky.
All the best going forward
Alex
Hello Colleen, welcome to the forum. I am a newbie too, and have written a few posts so far. It’s great to read everyone else’s news and encouragement and good to know people with similar concerns to ourselves are only a “keyboard” away.
You may well have already seen the videos on this site, but if not I commend them to you (it’s a UK lecture organised by Glasgow University) - that’s Glasgow Scotland, not one of the many Glasgow’s in the US! 😁. Amongst other very useful subjects covered is the story of one gentleman who has been living with CML for 25 years!
Also I have been recommended a most interesting a book called the Philadelphia Chromosome, by Jessica Wapner. It’s printed in the USA so should be easily available for you (I am guessing you are from the USA??) You may already have read it of course.
Good to hear that the hydroxyurea, or hyroxycarbamide as we call it, is doing well for you. It certainly seems to worked well for me having brought my WBC down to 9.4 from 125. It seems to be fairly fast acting.
Keeping posting, and all best wishes.
David
Hi Colleen, and all the other recently diagnosed members. Welcome to our forum and website. Hydroxyurea is often used as an initial therapy in order to get the white cell count down. Your spleen size has already been reduced because of the effect of H/urea and will reduce to its normal size (you should not be able to feel it) as you go on with TKI therapy.
I suggest you watch the upcoming iCMLfoundation's webcast tomorrow - 12th November - see times and how you can access this webcast (and others) in the post at the top of this page.
Best wishes,
Sandy
Yes the book Philadelphia Chromosome by Jessica Wapner I found to be fascinating reading and is a brilliant piece of medical journalism and not too complex to understand.To me the real game changer for CML was the decision taken by Novartis in the late 1990 s to invest in the production of a new drug Glivec for a condition that is often described as a rare cancer with only a small potential market of patients/customers.The book is easily available on Amazon for instance both new and used.Without the development o medical research and drug development of f tkis most of us would be faced with a shortened life span-quite a salutary thought.
Regards
John
Hi Colleen,
Consider discussing with your doctor a lower starting dose for sprycel (dasatinib) at 50 mg.
https://pubmed.ncbi.nlm.nih.gov/31553487/
Dasatinib is potent and continuing research is sggesting that the pharmacokientic starting dose (100 mg) is too high. The advantage for you starting at 50 mg is that it gives you a better chance of avoiding significant side (especially myelosuppression and pleural effusion) effects AND lead to a deeper response. Your doctor can monitor your initial response at 50 mg and if you need more can always increase it. I suspect you will respond quite well at 50 mg. Show the paper above to your doctor and ask if he is aware of latest research on dasatinib starting dose.
I was never started at 100 mg. - and was treated with 20 mg until my "undetected" status was achieved. Dasatinib is potent at the lower dose.