I was diagnosed with CML about four months ago, and I want to tell you that, I was a nervous wreck, finding out that I was going to have to take chemo everyday longterm, wondering will my hair fall out, puking my guts out. I read someone post here about absorbing the fact that you have a blood cancer and thiniking about your mortality. I am glad to know that I can talk to someone about this. I take Tasigna and am tolerating so far so good,but I did have to cut my dose in half because of the hurting in my muscles and bones. It got my white blood count down to normal, I go for a bone marrow aspirations or bone marrow in three months. I hate this procedure, as it was so painful, and I fear I will not want to do it again. Any feedback is appreciated.
Hi everyone I was diagnosed with cml about four months ago,
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Posted 23 April 2012 - 11:34 PM
Welcome Mariebow,
The first few months are the worst as you adapt to your new drugs, the side effects and the terror of having this disease. As time progresses and you see how amazing you are doing on the TKI's, eventually it will cease to be the first thought you have every day. It will change how you see your life, what you think is important (or not) and you may even have a sense of living more fully, appreciating the little things, and dumping those that don't fit into what you want.
The side effects will regulate, and even out. Many of us have no problem with them at all, and some of us have a new lifestyle that we need to adjust to. Every single person reacts differently to the drugs. Hopefully, yours will be one of the easy paths.
I am on Sprycel, dx Sept. 2010, and have had a very good response to the drug. I am, sadly, one of the very sensitive ones, and the side effects are hard on me. But life is manageable and there is still a great deal of fun and excitement to be had!
Welcome and good luck!
Caroline
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Posted 23 April 2012 - 11:45 PM
Thanks jrsboo for your welcome and encouragements, is TKI mean the medicine we take
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Posted 24 April 2012 - 12:29 AM
Hi Mariebow,
Welcome to our site,and welcome to your new virtual family. You will find the answers to any questions here. We have all been where you are right now, and we have had all different kinds of experiences, so we can all share them with you,and tell you how we all handled our side-effects,remember everybody is different and our bodys all handle the ( drugs, we call them tkis) differently. Right now there are 3 tkis,so if one doesn't help you or the side-effects are too hard on you there are 2 other drugs you can take, and another drug will be coming out soon, The 3 tkis are called Gleevac,Sprycel,& Tasigma. If you are now tolerating the Tasigma,stay with it as long as it is working for you. I was on G(Gleevac),but I had to change because of gi issues, I had before and G just made them worse ,so now I'm on S(Sprycel) and I'm doing good on that, I have no detectable leukemic cells now,so I get bloodwork (bw) April 30th and if I'm still undetectable I'll be able to go from 100mg. a day down to 50mg. I was dx 5 years ago.We have all come to live with the fact that we will
have to live with a tki the rest of out lives, And we will live a long long time. Old age, or being hit by a bus will kill us before cml will. I'm so glad you found our site.Believe me you will feel much better,after you've talked to a few other people. Trey,and many others will be able to explain what your numbers mean after you get bw done,if your interested in that, I'm just to dumb to grasp all that.
Also you can request to have your bmb&bma done under sedation. I only had 1 done and that was the day of my dx. If they want another one they better knock me out or I'll knock them out!
Best Wishes, Billie After a couple days talking to other people on our board, I guarantee most of your panic will go away!
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Posted 24 April 2012 - 03:59 AM
Hello, Marie,
Welcome, and glad you found us. TKI stands for tyrosine kinase inhibitor, which is the drug class to which CML drugs belong. They all work by preventing the tyrosine amino acid in the leukemic cell from getting phosphorylated. In untreated CML, once the tyrosine is phosphorylated, it is essentially stuck in hyperdrive and doesn't die off like normal blood cells. By inhibiting phosphorylation, the TKIs allow the leukemic cell to die. TKIs are fairly specific, and largely target the leukemic cells only. Thus, they won't kill off all your blood cells, just the leukemic ones.
Check out Trey's blog, lots of good info there for you.
The first few months are the worst pain wise. It will get better.
Traci
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Posted 24 April 2012 - 09:14 AM
Hi Mariebow,
As I read your post I was reminded once again of my own feelings last October when I was diagnosed. The chemotherapy work alone scared the heck out of me, and then having to take it for the rest of my life just about did me in. When I received my first shipment it was packaged in two separate bags with big red warnings on the bag stating it was hazardous to anyone touching it. After a few weeks of asking questions and reading the replies from many seasoned people on here I realized chemotherapy just means it is a chemical induced drug. This may sound silly but that discovery alone made me feel better. Then I started to look at other meds I have, they might not be wrapped in plastic with red labels but two other pill bottles have the same warning on them that the Sprycel has. I have not experience with Tasigna, but there are many people here who will share their stories and offer advice along your journey. I have learned it really doesn't matter much which TKI you take, the first few months can be pretty rough with side effects and your labs will probably bounce around so much you will think they are attached to a ping pong ball. I have only had one bone marrow biopsy and that was back in October when the docs were looking for diagnosis. Now I just have PCR test, a simple blood draw and they gauge my results from that. I have to share my hair did fall out in spots, but I was taking 140 mg of Sprycel and Hydrea for a while, so they really hit my body hard. I still have the occasional skin rash and headache but they are almost nothing compared to those first two weeks when I began the Sprycel. Please post your questions any question, no topic is taboo, and these awesome supportive people will all help you with your journey. I try not to get into detail about the medical side of our disease, I honestly am quite clueless to many of the tests, what results represent, and other clinical issues, but I will try to bring forth a laugh or two on occasion (hopefully). Welcome, you have found a good place.
Pam
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Posted 24 April 2012 - 07:23 PM
Hi Mariebow: Let me also welcome you to our group. You will be glad you joined us. There is always someone around to help with any questions you have. I am on Gleevec, which was the first TKI drug that came out to fight CML.
Just keep in mind that CML is not like it was years ago. People would hear the word Leukemia, and thought this is the end. Its just the beginning of getting to a cure for CML, through all the research that has been done to treat CML. To come up with a pill that you can take everyday, and kill off those cancer cells is a great accomplishment that has been here for quite a few years now. Yes, we get side effects. Some people tolerate the drug better than others.
I have been on Gleevec, and it was the only TKI available back in 2000. Now for people who cannot take one TKI, there are others to switch to.
Your still new to all of this, and its such a confusing time in the beginning to adjust and learn how this all works.
Try not to figure out every little detail, or it gets frustrating. You will learn as you go.
I hope you do very well on your Tasigna, and just tell your doctor everything your feeling so he or she can make it as easy as possible on you. I have to say with Gleevec, it got better as time went on. I am on it now for 11 years, and it has done everything it promised to do for me. I was diagnosed in 1998, so that gives you an idea of how you can Live With CML.
As you get to know us, you will see what a great group we have. We have serious conversations, as well as some great laughs along the way.
Hope you keep sharing and learning along with all of us.
Susan
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Posted 24 April 2012 - 07:51 PM
Thanks HappyCat I will try to learn all these names you all are taking about, right now it is greek to me some of it anyway.
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Posted 24 April 2012 - 07:53 PM
Thanks Susan61 all this info in appreciated
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Posted 24 April 2012 - 10:52 PM
Hi Marie I'm Baaaaack!
I just wanted to let you know that several of the people on this site have had the bone marrow biopsy (bmb) & the bone marrow aspiration (bma) done under sedation. Like I said I got mine done the day of my diagnosis (dx) no warning ,It is totally barbaric. I don't know how you arrange a bmb under sedation, but several others have them done that way, so they can tell you how to arrange it. Some people prefere to have it done without anything, because they don't like how they feel after sedation. I don't care if I'm out for a week,they aren't getting any more bone marrow from me unless I'm out cold. As far as hair loss goes,some of us have had our hair thin out, but it grows back. I really think that the only people who notice the hair loss is us because we know it is happening. I feel really bad for the men, because when they get hair loss, they don't know if it's our tkis,or male pattern baldness. My son is 43 and the last couple years his hair has thinned out a lot, he gets it from his fathers side. So you have a lot of time to check into the sedation. Forget modesty on this site, we discuss everything, and we get a lot of good remedys for stupid side-effects. My good friend Marnie just sent me a can of monkey butt powder, for hemmoroids, When they first told me about the monkey butt powder I really thought they were teasing me. Until I got it a couple weeks ago I still didn't believe them. I have been hemmoroid free since she sent it. I can't believe I'm sitting around waiting for my hemmoroids to flare up, just to see if this stuff really works. Take Care Billie
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Posted 24 April 2012 - 11:18 PM
hey there just wanted to put in my 2 cents worth. i was dxd oct of 09 i have been on gleevec,tasigna and now sprycel. i have cml+ph and mds. a very rare combo. g and t quit working for me but s seems to be getting me close. i have had 3 bmb. first one i was sedated i was in day surgery at the hospital for it,second one they gave me enuff drugs to make me loopy (not bad but still hurt) 3rd was given nothing but a shot to deaden the skin wth it was more painful than childbirth. nobody will ever get one from me again unless they knock my butt out.i have a high tolerance for pain and it had me crying yelling and i almost passed out from the pain.the side effects of these tkis can be a handful at times, but really they do get easier as time goes by. i thought sprycel was going to kill me,but i dont have too many side effects now.and my onc said it is working so i will take it as long as i can cos i dont want the bone marrow transplant. oh if it comes down to it i will. but as long as there is another drug out there i will go for the drug first.
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Posted 25 April 2012 - 12:25 AM
Hi Marie, It's me again,
I forgot to tell you that you are now officially a member of the ICRS (I Can't Remember S---) Club. It's a great excuse for getting out of things you don't want to do. Sincerely Billie
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Posted 25 April 2012 - 01:25 PM
Sarah, wow I am the same way, I told my dr that and that he would have to give me more pain med than others, so he thought that was enough, no way. He will have to heavily sedate me the next time, you know exactly what I am talking about.
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Posted 25 April 2012 - 01:52 PM
Welcome Marie! I'm coming up on my one year cancerversary (Apr. 29). When I first got the news I felt like I was in the twilight zone. I think it took at least 6 months for me to snap out of it. Kept having those "Is this really happening?" moments. It really does get better over time. I like what Caroline (jrsboo) said - "It will change how you see your life, what you think is important (or not) and you may even have a sense of living more fully, appreciating the little things, and dumping those that don't fit into what you want." Very true.
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