33 replies to this topic

[chrissy778]

Ugggh Today I had my results though I am happy to report my White went up and is no longer a issue Sadly so did my Pcr from undetected to 0.050 I have to go back in two months to have it drawn again. I already checked and it was the same lab..     So my numbers went from                                                                                                                                                                                                            05-2014 0.155

09-2014 0.013

12-2014 0.054

 02-2015 0.026                                                                                                                                

 05-2015 0.003

 09-2015 0.000

 11-2015 0.050

To say my anxiety is at its worst is a under statement.. The Dr said if it goes up again he will test for a mutation whitch I am guessing bone marrow   and switch drugs... I can not even think straight right now.. Anyone who has had their blood count do this I would appreciate so much if you would write your experience here...Sorry I can not get the top number to align...Also the only thing different I have done was start a probiotic.. The Dr said he does not think it would change anything but to stop it and see...

[kat73]

Oops, I think I responded under your other post.

[Widgeonus]

I have a co-worker that also has CML. She went from PCRU to low detectable and back to PCRU numerous times before eventually maintaining PCRU.

[chrissy778]

Thank you Widgeonus it scares me because my Dr said this was quite a hike and acted concerned... I don't handle health stress well so of course this has sent me into a mess mentally ...

[tinman1939]

Chrissy -

Look at my numbers (below). Not good at all compared to yours. That being said, my oncologist (at Baylor in Dallas) didn't hesitate to tell me to continue my current therapy and to see him again in three months (the usual time between visits). I let him know I was disappointed with the most recent result, as I went a bit backward, but he wasn't alarmed. Nine years of this stuff (started on Gleevec in '06) pretty much makes this all "routine," anyway.  Hope this helps.

Wayne

 

(Started Iclusig, or Ponatinib, on April 7, 2014)

Wayne's Progress                         BCR/ABL (IS Scale)

April 2, 2014                                      56.6 %

July 3, 2014                                       16.3 %

Oct. 3, 2014                                       54.9 %

Oct. 17, 2014                                     10.7 %

Nov. 24, 2014                                     12.95 %

Feb. 17, 2015                                     10.85 %

April 30, 2015                                      8.37 %

Aug. 11, 2015                                      1.46 %

Nov. 16, 2015                                      4.03 %

[chrissy778]

I must sound like a total douc bag right now... Thank you for sharing your numbers.. I see yours  are going down with a few bumps every now and then... Thank you for making me see that I am not alone and other peoples numbers fluctuate also.. ..I get my self so worked up I lose reality and think the worst... Thank you Wayne for taking the time to write me...

[mdszj]

hi chrissy

 

I had the same thing happen to me last year.  I was undetectable for a year then my pcr blipped up to 0.043% IS.  My hemo said to do a repeat 1 month later and the result was 0.005%.  Since then my numbers have gone back to undetectable.  He also ordered a mutation test, which came back negative.  I believe Trey told me that at those low levels, even if you do have a mutation it will not pick it up.  But it is not uncommon to have oddball lab results every once in a while.  I know the waiting is tough, I remember it very well myself.  Hang in, I'm sure your repeat test will be ok. 

[chrissy778]

Thank you mdszj..I know I have to try and stay positive your post helps. I hate that I am not strong and let my fear ruin my life...

[Trey]

No one wants to believe it was their PCRU which was the incorrect report.  Just sayin'

[CallMeLucky]

I understand your anxiety, I have the same tendency. No doubt about it that would freak most people out.
Things to keep in mind to try and calm yourself

PCRs bounce, not uncommon to jump up and then drop back down. I had a similar bump at one point and my dr gave me the "concerned look"; next test dropped back down.
PCRs are not an exact science, same sample run multiple times can give different results.
Even if it is really going up, that is unfortunately part of the battle. Fortunately there are numerous options and a change in treatment is usually effective.
You are still MMR. Bouncing in MMR is hard on the mind but irrelevant for cml from a clinical perspective.

Try to stay calm, as hard as it is.

[chrissy778]

Thank you Lucky, I will try. When I wake up in the night it is the first thing I think about. So many things run through my mind like what if I am becoming resistant or acute. I have dealt with health anxiety and worry since I was a child so to have this diagnosis is a fight mentally also when trying not to think the worst.

Its funny how when you get a good blood report you feel great physically ,mentally, but when something is off what your mind can do to your body, and how it makes you feel. I understand worry can make us more sick so I will try to be strong and listen to everyone's kind words. Trey I understand what you said, and it never even crossed my mind.. It was a nice 3 months of thinking I licked it.. not the shoe of course.. Love all of you guys you are my cml family XOXOOXO ps I don't know how to get rid of everything being written underlined, sorry

[tazdad08]

Hey Chrissy, I understand your anxiety!! I was pcru for almost 3 years and lost it a few months ago. The call from the oncologist telling me I was detectable was actually worse than the phone call with my initial diagnosis.. It literally floored me. Be strong!!! We got this. I was tested again 3 months later and was pcru again..... but I am gun shy every test now. I should get my results from my last test this week and I have a very strong gut feeling that I will be detectable again. 

[chrissy778]

Tazdad, exactly, I was so exhausted after my visit yesterday I felt like I had been diagnosed all over again. I was in shock in the office with the dr and spent the rest of the day sleeping after driving home in tears.. Thank you for sharing your post it makes me realize this is normal and I am not alone.. I will pray for another undetectable for you....  

[Cathy]

Hi Chrissy,

 

I have not reached MMR in 5 1/2 years but I'm very close again. My numbers jump around quite a bit and quit big jumps in my head but my onc assures me there is nothing to worry about. We all feel your aniexty but I'm sure next time your numbers will be back down. Try to stay positive which I know is almost impossible but the numbers will go down next time!

 

Hang in there! We are all pulling for you

 

Cathy

[chrissy778]

Thank you Cathy.. I let it get the best of me and get so worked up I start to feel tired, lightheaded, and winded. I believe it is the cml progressing when in reality it is anxiety.. Thank you for your kind words they mean so much and I will keep coming here to read the posts above for assurance.. I could not ask for a kinder group of people to keep me focused.

[soundoff]

Chrissy,

Don't let the lab results and doctors send you into a tail spin. I just got my latest results back and I'm now detectable but unquantifiable again. Welcome to the CML roller coaster. My doctor wants a mutation test now as well. I already know it's going to be negative but I'll entertain her.

Soundoff

[chrissy778]

Thank you Soundoff I don't want to go through life being so afraid of dying that I forget to live. I sometimes wish I never knew the meaning of Pcr and its numbers. I am going to start walking, drinking more water and  working on being more positive. I need to turn this around. 2 1/2 years since diagnosis and I have let it control me ever since. Anyone who would like to share what works for them to stay positive I am all ears. When I was first diagnosed every time I took my pill I would imagine it killing the bad cells. That and a lot of Will Ferrell movies helped me those first few months. I think I should start that again as well. I wish we could all do a group hug...I Love this group, you all don't realize it but your posts are saving me. Thank you

[thedook]

CML is definitely not fun and is definitely a roller coaster.  To keep it in perspective, I always try to think about what things were like for people who were diagnosed before the advent of TKI's.  We are really "fortunate" to not only have a drug to treat/contain/manage this disease but the possibility of a real cure at some point in the future.

 

Personally, I get pissed off that I am yet to hit MMR and have bounced around a bit since I started taking Sprycel in August of 2014. My PCR results are:

 

7/24/14 - 56.551%

1/5/15 - 1.645 %

7/6/15 - 2.871 %

8/25/15 - .42 %

11/3/15 - .37 %

 

Good but not great - or in the words of my Onc, an A minus (and I was always an A+ student).  I guess I belong in the Turtle subforum here.  And there's nothing I can do but wait until the next test to see if I make a change.  I could get stressed and wonder why I am not like the people here who get to MMR in what seems like 3 days.  Just live your life, exercise, eat well and cherish the time you have.  It's sometimes hard when the TKI's and the effects of the CML kick your ass by the end of day but try to remember this quote I saw recently: "Surviving cancer is not the end of a gruesome story. It is the beginning of a beautiful one."

 

All is takes is you to make it a beautiful life.

[kat73]

Chrissy - Me again.  It sounds to me like you are very close to discovering something that became very meaningful to me:  We don't have any time to waste.  (It took me at least as long as you have been at this.)  Here's the deal: Everybody dies.  EVERYBODY.  We CML'rs have had a glimpse of the reaper, which is more than some people get.  The ones who don't know yet, well, they just don't know yet.  We know it.  However, even we don't know how or when or why - even with all our knowledge about CML - we don't have those answers and neither do the doctors.  It finally hit me one day that all the time I spent in anguish, worry, anxiety, obsession, questioning was time spent unhappily and . . . it was GONE.  FOREVER.  And I suddenly saw the stark contrast:  that same time, I COULD have been doing something else (not climbing Machu Pichu, maybe walking the dog).  But TIME IS FINITE.  You don't get any more of it than the mystery allotment.  So, although I believe heartily in THINKING (NOT a waste of time), I have tried to tell the difference and rein myself in when my mind goes spinning into the dark.  I like your ferocious spirit - you will NOT let this get the better of you!  You can't control your numbers, but you CAN control your mind and your time.

[chrissy778]

What a great group of strong determined beautiful people. I love what you wrote thedook your quote is inspiring. Also your starting Pcr number was way higher then mine was and from what I see is  dropping drastically, so your response is awesome from what I can tell... Kat, it is a difficult and I do feel as though I have squandered so much time with overthinking my numbers and being down in the dumps and wasting time sitting and hoping for the best. People, mostly my husband and mother will say you have to fight it, and I would think, I don't know how. But what you wrote above has inspired me and opened my eyes to a new way of thinking. I am finding my fight with in and for once realize what I have to do. God Bless each and everyone of you.. Your hearts and compassion are amazing.