Ok so I was diagnosed nov. 5th and put on gleevec on the 15th of nov. My WBC are now normal and platelets good. But the Dr. Called and said that my Philadelphia chromosomes are not decreasing. So he wants me to increase to 600mg of gleevec. I'm so scared that this could mean I'm not responding to the gleevec and could this be something else? Like ALL? The dr. Was a bit puzzled to why my WBC are normal now and platelets good but chromosomes not. My head head is spinning with all of of this and I don't know what to do! Can anyone help???
Scared and need help!
Posted 01 January 2012 - 08:10 PM
I was dx in Feb 2011 and put on 400 of Gleevec. In July I had low WBC (but not dangerous), normal platelets (on the low side of normal) a low H and H. I was reduced to 300 of Gleevec because of side effects. My Phila chromosomes are going up and down slightly and I still do not have even a 2 log reduction but I feel much better with 300mg. My point is my doctor does not seemed concerned since my bone marrow biopsy was good. He feels that is the most important. I will have my BCR ABL done in 6 months and see where we go from there.
As Trey told me. Look for a trend not a glitch. He posted some great sites and postings, look at older questions by members of this group, they clear up a lot.
Posted 01 January 2012 - 09:54 PM
Your doctor may be a little anxious and making you nervous for no good reason. You're less than 2 month into treatment and you have hit the first milestone (complete hematological response), which is the response you want by three months. So far, so good.
What test did the doctor run at 6 weeks to determine your PH+ count was not decreasing? According to NCCN guidelines you would not have a Cytogenetic test (FISH) until 3 months post diagnosis and Bone Marrow at 6 months. What phase were you diagnosed in? Was there any reason to believe you are high risk? I wouldn't worry about ALL at this time if your counts are normal. Do you know if your doctor has a lot of experience treating CML?
Posted 02 January 2012 - 03:52 AM
Hello Snewirk, welcome !
As others said, I think you should relax here, you reached hematological response which is already a good thing at this point. Plus I really don't think it is ALL or something else, if it was another type of leukemia your blood counts would be much different
How many blasts had you at diagnosis? (0-10% = chronic phase). It is very likely that you were in chronic phase which is very treatable now.
Gleevec is a very good drug but it can need some time to act. what was your philadelphie count at diagnosis and now?
If gleevec doesn't work well/fast enough you will be given sprycel or tasigna that are more powerful drugs and will certainly work on you so don't worry there are many options
Posted 02 January 2012 - 10:20 AM
If Gleevec were not working, your WBC would not have returned to normal.
Your Onc is looking at this wrong. Your ratio of leukemic cells to good white blood cells may not have changed much yet by PCR or FISH testing, but the total population of leukemic cells has fallen significantly, as shown by the rapid drop in WBC. And this issue does not have anything to do with ALL leukemia unless your BMB showed risk factors for it, which is unlikely.
But if you want to increase dosage or even switch drugs, that is an available option issue for anyone at any time. No particular reason is needed to do so. If your side effects are minimal, an increased dosage is OK even if not really required, so follow your Onc's instructions.
Posted 02 January 2012 - 10:41 AM
It sounds to me like you need information so you can decide for yourself if your doctor has enough experience to treat your CML. The fact that he/she is puzzled at this early stage of the game is not encouraging but at least he/she is upfront about that! These drugs need time to work and for most people less than 2 months is not enough time.
I've attached the patients guidelines pamphlet from the National Comprehensive Cancer Network for your reading pleasure . It is very readable and easy to understand and tells you everything you ever wanted to know about CML, and the current wisdom on treatment at the 3, 6, 9, 12, 15, and 18 month marks. You have reached your first benchmark well within the 3 month period. According to the guidelines there is no reason to be considering a change in your treatment at this time. In order to better understand what they are talking about you are going to need information found in your test results. If you don't have copies of all your test results (make sure you get them in the future) call and ask your doctor for them.
There is a wealth of information in the next link accumulated by our own CML expert, Trey. This can be read at your leisure and with the excellent basis of information from the NCCN phamphlet will be more easily understood.
This site is wonderful for support, venting, complaining, etc. but it is up to each and everyone of us to learn as much about our disease as we can. It is not in our best interest to leave our treatment solely up to our doctors.
All the best to you in 2012!
"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 02 January 2012 - 07:41 PM
Hi: First let me welcome you to our group. That was the first step in the right direction. You were just diagnosed, and it sounds like this Oncologist is not experienced enough in the treatment of CML to scare you like this. Your off to a great start, and it takes time. Gleevec has been a great miracle drug for a lot of us, but it does not work overnight.
Do not get yourself all worked up over his remark. You were just diagnosed, and I do not want to say anything bad about your Oncologist. Always get a second opinion, which most insurances pay for. See if you can find a CML specialist which means someone who has treated thousands of CML patients I think you would feel better with another opinion.
I have had CML since 1998, so keep that in mind. This is a very treatable disease, and it depends on who is treating you also.
Please keep in touch with us, and ask questions at anytime. You have so many of us who have had different experiences with our treatments, and a lot of us have switched doctors so we could get the care we deserve.
Doctors are human beings just like you or me, and they are not perfect. Try to relax. Your doing good!!!
Posted 02 January 2012 - 09:36 PM
Thank you all so much! I have so depressed and unable to sleep with worry, I feel so blessed to have somewhere to go to talk to others with this. I lost my cousin to leukemia a few years ago so this is all a little overwhelming. Thank you for the tips and pointers! one more question, oe anyone take fish oil or vitamins? Can it help?
Posted 06 January 2012 - 01:45 PM
0 - 10% is chronic phase? Just curious. I was 18% at diagnosis.
Posted 06 January 2012 - 02:03 PM
My WBC went down pretty fast in the beginning, but it did take a few months for my BCR-ABL number to go down. Try not to panic. I know that's hard to do. Your body will adjust in time.
Posted 06 January 2012 - 04:22 PM
Determining phase is usually based on multiple factors with Blast count being one of the main factors, by itself, it may not be enough to say one way or the other, but in general, a higher blast count could indicate higher risk. But for someone who is responding well to treatment, it may not be that relevant, if you are responding well, then you are doing well..
Posted 23 December 2012 - 10:17 PM
I am a 47 year old athlete (30+ years), and a Mum with 2 daughters (21 & 15). I am new on this site and have some questions and hopefully will receive some advice..... Last month I went for routine lab work to check my anti-depressant levels, all was normal. 2 weeks after that, I had 2 more labs done after annual physical, test results showed low wbc and rbc counts (still within normal range)...Just 2 weeks ago, I had a re-take and now my CBC is lower (out of normal range) significantly. I have been suffering with serious leg bone pain, (especially after workouts!), low grade fevers, chills, mood swings, severe fatigue, dry mouth, nausea, feeling full, insomnia (due to severe pain), itchy skin, petechiae, constipation and the other morning, I couldn't get out of bed because the leg pain was excruciating and I couldn't stand up!!! My PCP wants me to see a Haematologist/Oncologist next month. I have no idea what to expect and what he/she will be looking for. I haven't seen my test results, so, I couldn't even tell you about any other levels. If anyone out there can assist me with info, thank you in advance. I will NOT quit my athletics no matter what.
Posted 24 December 2012 - 12:20 AM
Zorryn, I don't think you have enough information yet to know what to worry about. Some of those reactions could be due to different causes....anti-depressant medications are not without risk; some of those medications can cause problems when taken over a period of time. Even something like low K levels can cause terrible leg pain (remember, bananas are good and have a lot of K), especially if you overwork your body.and don't replace the potassium and fail to eat and drink properly (a cause of constipation). Too little fat, biotin, or protein in your diet could cause dry itchy skin, and so on.... And of course, some of those symptoms could be due to what is called "change of life" in my part of the world, and you are 47. Since you appear to be determined to not "quit your athletics no matter what", you may have a hormone imbalance caused by overworking your body and produce too much testosterone rather than menopause. So many possible causes; so little information.
I do not know what sort of physician you are referring to when you identify him/her as a PCP; I am unfamiliar with that term. but before you go to a cancer specialist, I would request that copies of all that blood work plus any other tests that were done be sent directly to the specialist of your choosing, plus request a copy of these results to keep in YOUR file which you should start keeping immediately if you have not done so already. It seems you are having labs done every two weeks? Or am I reading that incorrectly? Find out what the results are and take charge of your treatment, read and learn...help your physician as much as you can.
Meanwhile, rest your body and your mind, and enjoy those two daughters of yours, You obviously do not feel well and rest is as much of a requirement for healthy living as exercise is. Balance your life and try not to borrow trouble; get a diagnosis first.
Posted 24 December 2012 - 10:55 AM
Good post! A PCP is a Primary Care Physician, by the way.
Posted 24 December 2012 - 01:06 PM
Thanks, overcast!...... I googled PCP and got back millions of hits for some terrible thing used as a destructive "recreational" drug. I am a total innocent! Why would anyone risk their mind or body with this stuff? One needs to protect one's mind just to keep track of acronyms!
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