Hello everyone. I have been lurking here for a few weeks and finally decided to join. I am a 38 year old mom of two girls. I was diagnosed with CML on July 7, 2011 after a cat scan showed a very enlarged spleen and blood work showed a high wbc count. Saw my oncologist on July 12th and had a BMB done the next which confirmed CML. My onc. started me on Sprycel the day of my BMB. I seem to be taking the Sprycel well. Had the headaches in the morning for about 5 days. I haven't had one since. I do have some water retention in my abdomen though. When I was first diagnosed my wbc count was 280,000. After two weeks they were down to 106,000.
Posted 31 July 2011 - 04:03 PM
Hi: Glad you decided to join in and share your experience of being diagnosed with CML. You can get a lot of support and answers on this discussion board.
We are all different ages with different lengths of time that we have been living with CML. I have had CML for 13 years, and doing very well. Most of us were diagnosed just with a routine yearly blood test where we had the elevated WBC. Your just starting, and it sounds like your doing good already. Most of the complaints are usually about side effects. There are a few different TKI drugs. I myself am on Gleevec, and we have a lot who are on Sprycel, Tasigna, and some in clinical trials for new drugs.
Nobody wants to get CML, but if your going to get it this was the good time to get it. That might sound weird, but years ago they did not know what they know now about how to treat it. Hope we get to talk to you some more. You will find we have a great bunch of people on here.
Posted 01 August 2011 - 07:51 AM
July 7, 2010 was the day I went for my second opinion and got my definitive treatment plan. I started Gleevec a couple of days later. One year later my CML is undetectable and aside from the occasional days when I feel more worn out than usual, life is back to normal. Hang in there, the beginning is the hardest as you adjust to the fact you have this illness. It gets better.
Best of luck with your treatment.
Posted 01 August 2011 - 11:42 AM
Hi, I was diagnosed Jan. 10th 2011, started tasigna Feb. 1st. Fatigue is my biggest complaint. I have reach CMR in 6 months!!! I hate having CML, as we all do, but so thankful for the TKIs. There are so many great people on this site & share so much with each other. Welcome!!!! granny d
Posted 01 August 2011 - 04:12 PM
Thank you all for the welcome. I think I have adjusted well to the "news!" I have it , I'm going to fight it! The only thing I get anxious about is will the drugs work for me, what happens if they stop working. But, I'm sure everybody does. I've read a lot of info the Trey has posted. The only thing I'm not all that clear on is the PCR and Fish testing. But I'm sure I will catch on quick once that all starts for me.
Posted 01 August 2011 - 07:16 PM
I just joined this site also and was diagnosed in Feb 11. Being a nurse I thought I would handle it better, but I still get stressed. I see the doctor this Friday and feel better since I found this sight.
Posted 01 August 2011 - 07:47 PM
Hi: You were only diagnosed, and started on Sprycel. We have had people where they have had to switch to another one of the TKI's to get a better response, and then some of us like me who has been on Gleevec for 11 years In Oct has not had to change drugs. There are a lot of doctors starting their patients off with the Sprycel, and are doing great. Gleevec was the first TKI that was developed back in 2000, and now there are new ones coming up everyday.
Try not to worry about if it will work or not. I think your going to see some good changes going on within the next few months with your CML.
Glad to see all these new people joining to get all the support they need. Sorry its for something like CML, but you came to the right place.
Don't worry about the PCR testing yet. You will get to know all the terms, and when they do what test at what point of your treatment. Don't overwhelm yourself trying to know everything at once.
Posted 01 August 2011 - 10:24 PM
Welcome to the group! I was diagnosed July 9, 2010. I am a 42 year old mom to a 7 yr old girl and almost 5 yr old boy. I was started on Sprycel (after Hydroxurea) even before it was FDA approved for 1st line use. I have had great results and minimal side effects (the ones I have seem to cycle off and on every month or two). You may experience bone/muscle pain early on (especially in the legs) but it will go away after a week or so. Also, just to forewarn you (and it may not affect you but want to mention just in case), I lost a considerable amount of hair early on and was freaking out. (I had thick hair to begin, thank goodness.) Now, my hair is back to normal except more curly than before. So don't panic too much about that.
Great people here, so feel free to ask any questions you have.
Posted 02 August 2011 - 12:30 PM
I suppose that you love painting. Take a break of reading medical topics and
go to that link: CMLer's portofolio
But If you like more music, then go to:
Welcome to the group
Posted 02 August 2011 - 04:19 PM
I am new here also. I really feel well most of the time, I have been on Gleevec for 3 years. My problem now is insurance and how to pay for this drug..It is my understanding medicare does not cover this drug, how do people pay for this??? I am nervous and I am afraid. I will be left with nothing after paying for Gleevec. Please anyone who has had this happen , let me know how you are paying for this??
Posted 02 August 2011 - 04:36 PM
Hi Sue: Welcome to a club nobody wants to join, but you will get to know everyone eventually. You can find help here at all times. Glad your doing so good and feeling pretty good with your Gleevec for 3 years. I am also on Gleevec. We all go through different situations, and I am not on Medicare yet. You can contact Novartis who makes Gleevec, and if you have no insurance or low income they will help. I had to ask them for help years ago, and I was able to get my Gleevec at no charge from them. My husband was out of work, and they helped until he could get back to work again.
I am sure you will get a message soon from someone who is on Medicare to help you figure this out.
Posted 02 August 2011 - 06:49 PM
Welcome, Sue. As I understand it, our TKIs are covered under medicare, but not under major medical like other cancer treatments. It is covered under pharmaceuticals and is subject to a co-pay and, then, of course, there is the dreaded doughnut hole. The situation may not be as bad as you fear but it's still not good! Here are a couple of previous discussions to read:
Hope this helps!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 03 August 2011 - 01:38 PM
acb, yeah I have been experiencing the bone pain. Mostly in my joints. I am a runner so the leg pains are manageable to me! I hope I don't lose any hair. Mine is not thick like yours, but I wouldn't mind some curls! I had some blood work done today. Wbc count is down to 15.3. I noticed my platelets are low now. I don't see my Dr till next week but will ask him about that.
Posted 07 August 2011 - 12:35 PM
Hi - I will think of you as my kindred sister.......diagnosed the same time frame - my annual physical was July 6, 2011, and they told me on July 8th. Fortunately, caught early and I did not have the swollen spleen. They are starting me on Tasigna as soon as the dang local pharmacy gets it here - I found this site and am so glad I did. There were so many dark stories I heard,and the folks here and their posts have helped me to get through the folklore and on to the real stuff.
Be strong and remember lots of kindred spritis are with you every day.
Posted 07 August 2011 - 12:44 PM
Great links - thank you. Love the one created by your son.......... God Bless
Posted 07 August 2011 - 04:25 PM
Welcome to the club, and sorry you had to join it! How old are your girls?? I have three, 10, 8 and 8. I also have a cat named Cleo (my avatar)!
Posted 07 August 2011 - 04:40 PM
Traci, thank you for the welcome! My girls are 10 (11 next month) and 9. Cleocans is a nickname my husband gave our cat Cleo!
Posted 11 August 2011 - 09:18 PM
I was diagnosed in July of last year, actually was hospitalize on the 6th and CML was confirmed a few days after. It is very scary at first but after you see that the drugs work you get a better feeling that things will be OK. The worse of it is the side effects but they get better with time too. Being in touch with this group and being able to read and share really helps. When I read what others have gone through and how long they have had CML much much longer than me, it gives me so much hope and eases the fears. I am so thankful that everyone can share and learn from each other. It sure helps to talk to someone who is experiencing some of the same things. Anita
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