33 replies to this topic

[Gail's]

I react to scary things the way you do, Chrissy. Tears then sleep then reach out to others for help. That's worked pretty well for me. I'm new to the whole cml thing, less than a year and my numbers have steadily dropped pretty fast, in my opinion but are way higher than yours. 0.87 at last test. I haven't had a rise yet so can't say how I'll react if I do. That said, I think how high my FISH was, 92%, and feel very good about my numbers. The med has been awful for side effects but I try to look at where I was at the start and where I am now instead of comparing the most recent test to the one before. Would it be helpful right now to consider the starting number at the outset to your more recent results. A little broader perspective I guess.

[chrissy778]

Gail isn't it funny how that works, our reaction now to glitches and bumps in numbers compared to how we looked or perceived our numbers at diagnosis. Yes my pcr  a few months after diagnosis 09-2013 was 3.457 I had no idea what pcr was or even what a white count number should be. You would think  my dreadful thoughts of doom and gloom would of subsided by now . Thank you for putting it into perspective, it makes me realize how lucky and thankful I should be.. Also I am not sure what medicine you are taking but I can tell you with Gleevec the side effects will go away in time... Thank you again

[rcase13]

I had a slight increase last time and it freaked me out. I'm still panicked about it. But that is my nature. At 45 I don't see that changing. Also at 45 I don't see making it to retirement on these drugs. The side effects and long term cardio vascular side effects in particular really concern me. I hope a TKI less harmful is going to come out soon. Meanwhile I take my pills and wait for that phone call from my doctor with my results.

But one thing that seems certain is our PCR results are going to jump around and stress us out and drive us nuts.

[CallMeLucky]

Another thing to remember is that most of us have gotten it into our head that PCR results are more deterministic than they really are. PCR is a prognostic tool, essentially a canary in the mine shaft. It is meant to alert doctors when something may be going off track so they can adjust treatment. One PCR result is typically meaningless you need two or three before you can really say you have meaningful information.
Rising PCR is not a death sentence, it may not mean anything at all and if it does, usually it means a change in treatment not a certain trip to the funeral parlor.
I'm guilty of freaking out when it happens to me, but this is the reality.

[chrissy778]

Thank you Lucky, that is exactly how I was perceiving it.. Each Dr visit I do look at the numbers as if they hold the answers to my death or do I get to live. I put way too much meaning into them. When I get my results I rush to my folder write the new numbers under the previous ones, looking to see how much and what has fluctuated from the visit before. Its a awful way to let it control your life. Thank you for bringing common sense back and reminding me about treatment, that we have treatment and options not just numbers.. I laughed out loud about the funeral parlor part..its true. I get a rise in numbers and become a deer in headlights, finding it hard to communicate, thinking I wont be around much longer. That's how it effects me anyway.. Thank you for the reality check..

[Kali]

Hi Chrissy!
I am fairly new to this sight. But I will say I get anxious also about CML and I grieved a lot for several months when I first got this shocking diagnosis. Then I finally accepted it but I too become anxious with every pcr number hoping things will be good. This forum has been so helpful with all the knowledgable people here. It has helped so much! I also work full time and am raising my child who is very busy with activities so all of this helps me. I also read any encouraging information on news about CML. I am really looking forward to hearing about the Ash conference that is happening now. I have the patients on my mind everyday that are going through bone marrow transplants and praying that they will do well. I hope all of us do well with this disease and will be cured someday in the near future. The cessation trial information if very encouraging too.
It is hard with some days better than others. Anyway these are some things that help me cope with this.
Another resource that helps me is Patient Power. You can join online or follow on Facebook or Twitter. Andrew Schorr is the host and he keeps updated information about blood diseases on here. He is at Ash right now and will be broadcasting his interviews with the experts tomorrow at 5:30 eastern time. His site has been very helpful to me also.
I wish you the very best!

[JPD]

I bounced from .50 to 1.0 and now back down to .85.  Never been lower than .50 in almost 2 years.

 

You're doing great.  We're all doing okay - as we are all still alive.

 

Take the pills, live your life.

 

Repeat 3x per day:

 

"The drugs are working

The cancer is dying

I will live to see a cure"

[chrissy778]

Love you JPD Thank you.. I am going to copy this and tape it to my fridge and next to my bed.

[chrissy778]

Kali, what great information you provided, I am going to go check it out now. Also thank you for sharing encouraging news. I sometimes google just on a whim not knowing what I will find. I start reading stuff that is outdated and think turn it off, get out of this site, but I continue to read and as you can imagine that does not help matters. Thank you for sharing your fears and what helps you cope, I will try to continue being positive and stay busy also.

[jmoorhou]

My pcr bounces around......maybe you need a new doc...I'm sure mine went from .09 to .1....my doc doesn't tell me which I'm happy about.

[Karen06410]

I haven't been on here in quite some time, but am now in a crisis, similar to Chrissy.  I never knew any of my #'s, since I just wanted to hear good news and told the dr. not to tell me any bad unless necessary.  I see you are all talking about PCR and BCR #'s.  I am not sure what they are.  But when I was diagnosed in May 2015, my white blood count was 53, I believe and now it's in the 6's.  I see my dr. every 3 months and have blood work, and so far so good, until now.  I had my usual blood work in Nov. and my dr. said all my #'s were good.  She stated we had to wait until a certain blood test came back which takes 2 weeks to come back, and then based on that test she would decide if I needed another bone marrow biopsy.  (I have had 2 already, both showing some cancer still in the marrow, I believe).  Today, my dr. called me and stated that the blood work should a small amount of cancer cells still in my blood, and she was going to increase my Gleevec from 400 to 800 mg.  I thought that was a big jump.  I also have to have another biopsy.  Has anyone else had this happen?  I am so sick to my stomach and feel that this call is saying ok, this it for you, you are going to die soon.  Why did this have to happen at Christmas of all times.  I have a call into my dr. to ask some questions, but she never called me back, or maybe her secretary (who is difficult) never told her.??  I need some encouragement from people who have had this disease for awhile.  Thanking all of you for any help you can give me.

[Antilogical]

1.  Even if the PCR comes back as Undetected, there are still residual cancer cells in the blood.  They are just too low to measure reliably.

 

2.  You really need to know what your numbers are.  CBC's, and PCR or FISH.  Ask.

[Buzzm1]

I haven't been on here in quite some time, but am now in a crisis, similar to Chrissy.  I never knew any of my #'s, since I just wanted to hear good news and told the dr. not to tell me any bad unless necessary.  I see you are all talking about PCR and BCR #'s.  I am not sure what they are.  But when I was diagnosed in May 2015, my white blood count was 53, I believe and now it's in the 6's.  I see my dr. every 3 months and have blood work, and so far so good, until now.  I had my usual blood work in Nov. and my dr. said all my #'s were good.  She stated we had to wait until a certain blood test came back which takes 2 weeks to come back, and then based on that test she would decide if I needed another bone marrow biopsy.  (I have had 2 already, both showing some cancer still in the marrow, I believe).  Today, my dr. called me and stated that the blood work should a small amount of cancer cells still in my blood, and she was going to increase my Gleevec from 400 to 800 mg.  I thought that was a big jump.  I also have to have another biopsy.  Has anyone else had this happen?  I am so sick to my stomach and feel that this call is saying ok, this it for you, you are going to die soon.  Why did this have to happen at Christmas of all times.  I have a call into my dr. to ask some questions, but she never called me back, or maybe her secretary (who is difficult) never told her.??  I need some encouragement from people who have had this disease for awhile.  Thanking all of you for any help you can give me.

Karen, if your numbers are decreasing, as you say, there shouldn't be a need to increase your Gleevec dosage, or have another BMB.  First things first, obtain your test results from your doctor.  The average time to reach PCRU with Gleevec is 18 months ... your WBC, at 53, wasn't that high to begin with, compared to many others here, so it probably wouldn't take that long in your case. ... you're only seven months along.   

[Karen06410]

I am so sorry Chrissy for all your anxiety. It is so hard to not strew and stay positive when we have such an illness as ours.  Always wording about the next dr. visit, the next test, etc.  I pray that your #'s will go down and stay stable.  

 

I know how you feel, I am there also.  I really don't understand all the #'s either, and really don't want to know.  So I told my dr. I didn't want any stats. or life span, etc.  So when I see her she just says my #'s are good.  I never knew about PCR's or MMR, etc. until reading about it here on the discussion boards.   But Mon. my dr. called me and stated that I am not where I should be after 18 months of being diagnosed, so she wants to increase my gleevec to 800 mg. from 400.  I spoke to her today and asked if some # went up, the PCR and she said yes.  That is was 2, then 3 and now 4.  So I have to increase dosage and have another bone marrow bio.  (I have had 2 already).  I have a heart condition and am concerned about taking more gleevec, since it does effect the heart.  So now I will have to contact my heart dr. and see him more often.  Great.  

 

I know it's not easy for any of us with CML.  I just pray for a cure and for all of us to be healed, or at least be able to live without anxiety and not feeling well.  Thank you all so much for sharing.  I appreciate hearing from all of you.