About Me-i am 37 years old. I just had blood work and my wbc was 157,000. I went to see a oncologist and had more blood work and bone marrow biposy done. I should get the results in a day or two. they think I have cml and hopefully in chronic stage. Pretty scared
newly diagnoised with cml
Posted 05 February 2012 - 04:03 PM
Posted 05 February 2012 - 04:10 PM
they also started me on hdroxyurea and allopurinol to get my wbc down quickly. I meet again with the doctor this thurs.
Has anyone had good luck on the three drugs out for cml?
any major side effects?
average remission time?
Posted 05 February 2012 - 04:26 PM
Hi and welcome,
I was diagnosed in July 2011. My white count was 220,000. Put on Hydrox & Allo for a few weeks until blood counts stabilized and dropped a lot. Then came off them and onto Sprycel. Reached major response at 3 months and complete response at 6-7 months. Have felt great for the most part except during the first month or two. Side effects come and go but nothing extreme. I feel blessed that the med is working so well with minimal interruption to my overall well being and the rest of my life.
Wishing you good health and many happy days...
Posted 05 February 2012 - 05:01 PM
Sorry that you have to join us here, but what a brilliant move on your part to be speaking up from the very start: well done!
It's natural to be scared: we all were when first informed of this unwanted diagnosis!
The best thing, along with time passing, is to be informed about what is happening, and what to expect, and to learn everything from updated sources (don't bother reading anything more than even a couple of years old).
Here you go: read this that Trey, one of us here on the site, has put together so brilliantly for everyone http://treyscml.blogspot.com/, make notes, and lists of questions for your oncologist (starting with: "do you have any other patients with CML?") then have your appointment (it would be good to bring someone to write down the answers to your questions as the doctor speaks).
And ask for printouts of all your test results so that you can have them for reference — indeed, they will be good to refer to for future questions and to see your progress: it all helps.
All the best to you, and let us know how it goes, and ask any questions that you have
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 05 February 2012 - 05:49 PM
Hi there, welcome to the group
I'm 29yo and was diagnosed with the same WBC as you in June 2011. It is very scary in the beginning but it really does get better. If you read Trey's blog it will tell you that 95% of people have a good response with one of the drugs, and at this stage there is no reason to believe that you will not be one of them. If you need help understanding anything the doctors tell you, you can always post on here and someone will be able to help you out
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 05 February 2012 - 08:23 PM
Welcome, and so sorry you ended up here! But it's a good place to be if you have cml.
Pls know that you will be fine, the odds are with you on this. Hard to believe when you hear cancer, but it CAN work out for you. So don't think you've been doomed. You will be fine.
I was never on hydroxyurea or allopurinol, my numbers were too low for that. But I started feeling the effects of gleevec within about 2 wks. Lots of fun bone pain. Hope it doesn't happen to you, the allo-p might help with that. I've always wondered if my pain would have been less with it. If you do feel pain, call your onc so you can get Rx pain relief if needed. I had to have Vicodin.
Posted 05 February 2012 - 08:49 PM
I am sorry you had to join our group, but you have found a great place for support, excellent advice, and even a laugh or two. Please done be afraid to ask questions, vent, or share, we are all here to listen.
Posted 05 February 2012 - 10:16 PM
thank you everyone for your kind words and informative statements.
I just hope it is in the chonic stage and I can live somewhat of a normal life. I will let you know when I found out tomorrow or tues and when I meet with dr on thurs
Posted 05 February 2012 - 10:40 PM
Welcome! Just finished my 3rd year, 8 months on G then Sprycel. I would be very surprised if you weren't chronic phase; don't waste any time worrying about that.
Good on you finding this discussion board so quickly, lots of good support and excellent advice here when you need and want it.
"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 05 February 2012 - 11:49 PM
I alway hate it when I see the young diagnosed with cancer, (you @37).
July 2005 I was diagnosed with CML + PH (PHILADELPHIA CHROMOSOME). at the age of 57, although I am sure that I had it for several years, at Least that is what the doctor at MD Anderson Houston Tx said, and when I went back to look at my CBC labs (2002) 3 years prior to diagnoses in 2005, well I think either the doctor missed some highs and lows that were kicked out on the CBC, or she didn't think they were so far out of guidelines, but it would have been nice if she, primary MD had told me 3 years before diagnosed, hey your CBC kicked out some odd numbers, maybe we should do another CBC instead of mentioning it to me, she just waiting another 3 years and said time for labs. Sometimes I have heard the comment that if primary MD are not familiar with a certain area on labs, they sometimes overlook things that are not their expertise, unless the numbers are huge.
The reason I mentioned this one of the most important things that you can do, is tell your nurse/onc right up front, I want all my lab reports and keep them filed in a safe place, so you can see the trend, and post them on this blog, some of the people on here are excellent at helping you understand the numbers, that would not be me. Some doctors don't have time to explain, and sometimes it is just so overwhelming. I like to look at my labs before I see the doctor so I can digest what is going on, sometimes I have found when the doctors office calls me and says I need to see the doctor tomorrow, which throw me a scare. Then only to find the onc has made a mistake in looking at the wrong report or not all of the reports. These doctors get very busy and have lot of patients. So keep tract of everything.
When I had my CBC done in 2005 it came back with 1 million platelets, white cells about 13,000 (not to bad) then when I went to the cancer center a couple weeks later and they did another blood lab and platelets were over 2 million & white cells at 23,000 somewhere in that area. I had looked up platelets on the web and thought I had something other then CML. The oncologist at the cancer center explained to me that my granulocytes, which are made up of Neutrophils, Basophils, Esinophils, were off and they are what makes up the white cells, which means even though my white cell counts were not necessarily so high, like some folks with CML, the granulocytes tell him the white cells are not normal. Therefore I need a Bone Marrow Byopsy, as he thought I had a blood cancer.
So I had to wait another 2 weeks for the biopsy, then wait another 2 week for the diagnoses. Then I went on hydroxyurea to bring down the platelet count, mainly because I was waiting for an appointment to see if I wanted to do a clinical trial of 400mg or 800 mg of Gleevec. When I first took the hydrox for a few days the platelets were still going up so they double the dose after another few days they still were not going down, so the doc tripled the dose, then they started coming down. Then about a month after hydrox I started on 400 mg of Gleevec and all my counts went down very quickly and very low and I had to go in the hospital with low white cells, called Neutropenia, for antibiotics. Then went off Gleevec for awhile until CBC counts came up.
Have been on Gleevec now for 6 1/2 years. Gleevec was the first target drug to come out in 2001, then Tasigna which is a cousin of Gleevec, then Sprycel which is different chemicals. So Gleevec was the first line of treatment, then Tasigna and Sprycel the second generation. Now there are some in clinical trial.
Sorry if that was to much information.
Posted 06 February 2012 - 03:06 PM
Sounds like they caught it early compared to some others. Mine was caught early and everything has worked about for me so far. I have/had very little if any side effects. I was diagnosed at age 19, this April will be 10 years for me. The whole time I have been on Gleevec. You are in the right place if you have any questions.
Posted 06 February 2012 - 03:54 PM
I was 37 when diagnosed, now 39. Tough at first but gets much better over time. As for your questions
Has anyone had good luck on the three drugs out for cml?
Almost everyone has good luck on the TKI drugs, they are an absolute miracle. Every once in a while you hear of someone who does not respond well, but it is very rare and now that we have multiple drugs to choose from, that is getting to be even rarer. Today if one drug doesn't work for you they switch you to another one and that usually works.
any major side effects?
Again, rarely you here about really bad side effects, for most, including myself, they are more annoying. Enough to let you know they are there, but not enough to stop you from going about your day. I get some muscle pains, and I am more tired then I probably would be, but I work full time, support my family, which includes two young boys. I am working on my masters degree, I'm the den leader for my son's cub scout pack, I just wrapped up a book project that I was a co-author on, and probably a bunch of other stuff I can't remember (not trying to brag, but point out that even with CML, I still have a very full and active life).
average remission time?
If you read Trey's blog you will learn about our treatment milestones. You will learn that we don't really go into remission per se. As wonderful as our drugs are at controlling CML, unfortunately they do not cure us of the disease because they are unable to kill the CML stem cell. So for us it comes down to getting the disease under control and driving down the leukemia to what they call minimum residual disease. In this status, there is a small amount of leukemia still in your body, but not enough to hurt you or progress to a later stage. The TKI drugs keep it under control, but unfortunately if we stop taking them, the disease comes back. So it is important to take your meds. The number one reason people with CML relapse is because they don't take the meds as prescribed.
Occasionally people relapse, but it is rare. Often the relapse is the result of not taking meds. For those who do everything right and still relapse, we have the benefit of having a few different drugs to try. It is becoming more rare to hear about someone who relapses and can't get it back under control with another drug. In the worst case scenario those people go on to have bone marrow transplants, it is a difficult and risky procedure and should only be done as a last option, but the procedure often works and more people are surviving them as medicine gets better at it. There are many options, I wouldn't worry about relapse, likely won't happen.
Posted 06 February 2012 - 07:11 PM
I was in my late 50's when diagnosed 7-8 yrs ago. My elevated WBC was discovered on routine labs with my annual physical at work (was that God watching over me, or what!!) I had my labs repeated, saw an oncologist, and immediately started on Gleevec 400mg daily. I was having CBCs done weekly and my labwork responded within the week. It took a few weeks to get back into normal range. I am an RN so had LOTS of questions for my oncologist. Finally he said, in a rather dismissive tone, "Why don't you phone Dr Brian Drucker." (participated in development of Gleevec and was nominated for a Nobel Prize for his work). I went home, got on my computer, phoned a number and was waiting to speak to a receptionist. Low and behold, Dr Drucker ANSWERED HIS OWN PHONE. Completely threw me off balance. HAHA!! He answered a few questions then had his nurse practitioner communicate with me by email for a few months, which was a HUGE help! He suggested that I should have a FISH genetic test done every few months, so I told my oncologist that Dr Drucker had suggested it, and he ordered it. It's very expensive so once I was confident that I wasn't going to die, I had it done every 6 months for a few yrs, and now it has been over a year. My labwork has never changed once stable (knock on wood!), but I continue with CBCs every 12 weeks. I didn't mean to get so wordy but I pray for you that you have an easy time getting stable and staying that way!
Posted 07 February 2012 - 02:15 PM
I was diagnosed 6/30/11. I had a physical on 6/29 and my dr's lab couldn't get a reading on my CBC. Sent it off to the lab and found out the next morning my wbc were 317k. I had an oncologist appt and BMB that afternoon. After 3 doses of Hydrea, I was so anemic that I started spiking fevers and couldn't move off the couch, so I ended up spending 2 days in the hospital. My oncologist told me from the beginning that I would be able to live a normal life with CML, but when I was in the hospital, I was pretty sure he was lying to me. But after six weeks off work and my blood counts getting normalized, I feel so much better. Still not quite "normal," but I hope I will continue to feel better with more time. I started Tasigna not quite 2 weeks after diagnosis and my 6-month pcr was 0.6%. Hang in there. The first few months are the scariest, but eventually you will reach a point where your every waking moment is not filled with thoughts of cancer.
Posted 08 February 2012 - 04:27 PM
Welcome, I am 56, DX 8/31/11, on Tasigna, tolerable side effects. I am now back to playing hockey. It will get less scary and less dominant in your mind. Take care, Jack
Posted 10 February 2012 - 09:47 PM
i met cancer doctor to go over results yesterday. confimred CML. Confirmed first stage, confirmed low risk. So great news. They are starting me on Nilotinib,
will go for blood work on weekly basis and follow up with dr every two weeks to see if I am taking to the medicine,
Has anyone been on this medicine and is it good>
thanks for all your help and informative information. I really appreciate it.
I will keep people informed next week.
Being on the chemo drug did get my level down from 165,00- to 75,000.
Posted 11 February 2012 - 09:14 AM
Great news, Tasigna is working well for me. My only real advice is that after your numbers bottom out and stabilize, don't sweat the small fluctuations. Watch the numbers and follow the trends, and don't worry too much unless the onc does, and then let Trey and the others with experience smooth out the ripples. Look at Trey's blog for the proper tests at the proper times, and the questions to go in with, but live your life--these drugs are amazing! I was back playing ice hockey in a couple of months--still have some fatigue, but don't sweat the small stuff, eh? Jack
Posted 14 February 2012 - 07:07 PM
I'm on Nilotinib (Tasigna), and it's working well. I haven't quite hit a 2 log reduction as of my 6 month pcr, but I was pretty advanced in the chronic stage when I was diagnosed. I'm hoping for at least a 2 log reduction (really hoping for 3!) by 9 months.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users