Hi I am new to this site, but I have had CML for 6 years ( will be 7 in Jan.). I have never achieved MMR - always low numbers - never really concerned. I had a PCR test done on 8/5/15 do not slight rise in the last test. The number in 8/2015 was 0.01%. I had another PCR test done to unusual CBC test on 11/19/2015 and the oncologist called and said my number was now 3.2%. Even when i was was dx it was never that high. i have a BMB scheduled in 3 weeks, but I am concerned about that number- my anxiety is starting to affect my daily life. Should I be worried? Do I have full blown CML back? Any advice will help... Thanks
Posted 04 December 2015 - 09:30 AM
My first thought would be the last PCR was incorrect. I would repeat that last PCR immediately to confirm that, then hopefully he BMB would not be necessary. I might also have a FISH done.
I assume the CBC showed increased WBC. What was the WBC?
Posted 04 December 2015 - 01:28 PM
Thanks for replying Trey,
My CBC did show normal WBC. low RBC 3.41, low hgb 11.0,low neu at 37.4, high eso at 15.8, BA 2.1 high and slightly high platelet count at 433. I have never had this wacky of a CBC. When I was dx in 2010 my platelet level was at 2.4 million - so normally even these test results dont bother me. I have had 4 PCR tests this year do to rising numbers, but the last one in 8/2015 was lowest so no worries. My onc said due to the unusual CBC we should do the PCR and now that came back abnormal he said we will have to do the BMB . When I was first dx my WBC count was only slightly elevated to. I dont mind the BMB, I just hate thinking of new side effects of meds. I have been on Gleveec for 7 years.
Posted 05 December 2015 - 11:19 AM
Assuming the EOS and BAS levels you provided are absolute values, not percentages, your EOS is quite high (normal: 0 - 6) and BAS is a tiny bit high (normal: 0 - 2). Do you have severe allergies or asthma? If not, you should continue to see specialists until you figure this out. The high EOS would be the primary issue to figure out. I would have another CBC done as the first step. Sometimes these blips happen. The PCR must also be re-done, as discussed earlier.
Since your WBC was normal, that lessens the concern about the recent PCR result. But it does not remove all concern, so follow through with another PCR, and the BMB is a reasonable precaution especially with the high EOS. The BMB may possibly be useful for the EOS issue, not just the rise in PCR issue.
Edited by Trey, 05 December 2015 - 11:27 AM.
Posted 09 December 2015 - 07:18 PM
Happy to meet you. I do am fairly new to this board. I am in the same place as you are with the PCR rising. I am not real familiar with all the tests and #'s. I was diag. in May 2014 and take gleevec 400 mg. My dr. told me Mon. that I have to increase it to 800 mg. since my PCR went up to 4. It was 2, then 3 and now 4. I also have to have a bone marrow bio. I have had 2 already. I really don't understand all of this. When I saw her 2 weeks ago she stated that all my other blood work was good. But that the one I had to wait for 2 weeks to get results is the PCR one. (she didn't tell me any of the test's name, etc. because I told her I didn't want to know anything other than my results were good.) I just found out about the tests names by going on this board.
All this does is cause major stress, which I am sure is what you are feeling as well Kelly. (and probably everyone else on this board.) I just want to take my meds and live my life without having major anxiety attacks. I feel like throwing up and fainting.
I am so sorry about this for you Kelly, but I am sure you will be fine. You have had it for almost 7 years, and you seem to be doing great. So try not to let this ruin you from enjoying your life and this wonderful time of the year.
I haven't told my children about the increase, since it is so close to Christmas, I do not want to put a damper on things.
I pray that you have a blessed Christmas (if that is the holiday you celebrate), and a very healthy New Year. This is my prayer for all of you here with CML or any cancer. Take care all, and thank you for listening. I know I go on too much, but when I am stressed I can't shut up sometimes.
Posted 10 December 2015 - 10:56 AM
Karen - I know you haven't asked for advice. But I'm going to throw in here, very gently, a possibility for you to consider. You are free, of course, to reject it utterly as being not your way of doing things. I have found that NOT knowing things INCREASES my fear and anxiety. In a way, anxiety IS fear. And there seems to me to be no fear quite as powerful as fear of the unknown. I found that the more I learned about CML, the better I felt. There was LESS fear and I felt MORE powerful and in control. (Illusions, I know, but the FEELING is real.) There is no better compendium anywhere than Trey's CML blog - I would read it for hours, educating myself. I came to this forum and looked and listened and learned. And I started Googling all my lab numbers, so that I could question the doctor about mine. I hate to think of how scared you are about the rise in your PCR. It may be all right, or it may be something that you will have to deal with, like a change in TKI. I don't know. But the way I came to look at scary things was, the actual truth is out there, waiting, and it has my name on it - I can't change the truth by not seeing it. It's better, I came to feel, to go out and meet it and get to know all about it. Sometimes, you know, it isn't all bad. I hope you forgive me for challenging your coping strategy - I don't mean to overstep the boundaries here. Everybody is different (thank goodness!) and you know yourself best. You can just tell me to go soak my head.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 10 December 2015 - 10:59 AM
Thank you Karen,
I am a nurse and I dont even listen when the doc says the numbers anymore. I sometimes feel like ignorance is bliss. Unfortunately my kids are teenagers ( both started driving this year) UGGHH. My Children haved lived with this CML crap for 7 years. My kids understand the disease and know when there is a good day and try to get all there shopping done that day....both girls figure that. Hoping goes good for you in this merry time of year. Kelly G
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