64 replies to this topic

[JohnFromChicago]

I suppose I should start by introducing myself. My name is John I am 28 years old living and working in Chicago. I was diagnosed about 6 months ago in October of 2015. I had not been to a doctor in years since I never really had any reason to go and eventually went for a checkup which led to my diagnosis. Being diagnosed has really driven my anxiety through the roof. I never really had anxiety prior to my diagnosis I was pretty laid back and lived a pretty stress free life. Now I spend hours on most days reading through statistics trying to convince myself that I will probably live a normal life span. I am on 100mg sprycel and have not had any real awful side affects, just some minor annoyances (muscle twitches, ect). I have been reading posts from this forum nearly every day since I was diagnosed but finnaly am creating my first post now. Today I got the results back of my six month PCR they were .639% IS. I was really hoping for it to come back .1XX% but I guess I was being a little too optimistic. I am feeling a bit of disappointment but still trying to stay positive. My three month PCR result was 1.2% which I was very excited about. My Six Month PCR still has me feeling in this place that my life is on pause. I was really hoping with the weather getting nice CML could take a backseat but my anxiety will probably get the best of me for the next few months till my next PCR. I am hopeful my Nine Month PCR will be less than .1% which would really help me feel more confident and would hopefully relieve the pause affect. I am although trying to be realistic now that this may not happen.

 

Diagnos PCR = 87% 

3 Month PCR = 1.2% 

6 Month PCR = 0.639% 

 

I should note that I did have my six month PCR at 76 days instead of 90. Given this I estimate now that since I had a .28 log reduction in 76 days I would have had a .33 log reduction in 90 days. If my PCR continues to follow this trend downwards at the exact same rate I would not meet the Milestone of MMR at 1 year

 

Estimated   9 Month PCR = 0.26%

Estimated 12 Month PCR = 0.12%

Estimated 15 Month PCR = 0.06%

 

I know my estimations are just really a guess based on the trend of my PCR between 3 Months and 6 Month but I have yet to see anyone have an upward trend in rate of log reduction. Seems everyones rate of log reduction decreases over time or stays the same never increases except with dose increase.

[Buzzm1]

JohnFromChicago, you are doing great.  Your three month reading exceeded the desired <10%.  The six month reading is also very good. You are trending down which is of most importance; besides, any single reading has yet to be put in the clearer context of the readings before and after it.  Anxiety is normal in the first year, or two, of CML.  Try to relax, you are doing very well.

[JohnFromChicago]

JohnFromChicago, you are doing great.  Your three month reading exceeded the desired <10%.  The six month reading is also very good. You are trending down which is of most importance; besides, any single reading has yet to be put in the clear context of the readings before and after it.  Anxiety is normal in the first year, or two, of CML.  Try to relax, you are doing very well.

 

Thanks  I hope I can break through my anxiety before two years but I suppose being "on pause" for another 1.5 years would not be the end of the world either 

[gerry]

It does get better. I think most of us spent all our time looking things up. Just make sure you are looking at current items, lots of old info on sites.

[kat73]

John, your numbers are actually really, really good for the time frame you're in.  You are ahead of the game.  I am sorry that you have to deal with all this at such a young age.  But you will be able to take advantage of the cure when it happens, so that will be a blessing.  In the meantime, find your way, come here to kvetch, and most importantly, read Trey's CML blog.

[tiredblood]

Welcome. Glad you're here, but sorry you have CML. Staying busy helped me with my initial anxiety. I remember thinking, I've got to stop stressing over this. From what I understand, trending down is a good thing.

[chriskuo]

Somehow in your reading you set up unrealistic expectations for yourself.  If you look at the charts from the clinical trials, which you can often find in archived LLS presentations on CML, you will find the optimistic but REALISTIC response to CML on TKIs.

[r06ue1]

Welcome, you are doing very well, what drug are you on?  Good results.

[JohnFromChicago]

It does get better. I think most of us spent all our time looking things up. Just make sure you are looking at current items, lots of old info on sites.

Thanks Gerry yes I am very careful with this I try to only read items published after 2009

[JohnFromChicago]

John, your numbers are actually really, really good for the time frame you're in.  You are ahead of the game.  I am sorry that you have to deal with all this at such a young age.  But you will be able to take advantage of the cure when it happens, so that will be a blessing.  In the meantime, find your way, come here to kvetch, and most importantly, read Trey's CML blog.

Thanks Kat!  I think I read Trey's Blog from top to bottom 10 times the night I was diagnosed haha I agree my current numbers are meeting the milestones (2log reduction at 6 months) but it seems If my log reduction rate continues with its current trend I would not reach the milestone of MMR by 1 year which kind of disappointments me :\

 

I should note that I did have my six month PCR at 76 days instead of 90. Given this I estimated that since I had a .28 log reduction in 76 days I would have had a .33 log reduction in 90 days. If my PCR continues to follow this trend downwards at the exact same rate I would not meet the Milestone of MMR at 1 year

 

Estimated   9 Month PCR = 0.26%

Estimated 12 Month PCR = 0.12%

Estimated 15 Month PCR = 0.06%

 

I know my estimations are just really a guess based on the trend of my PCR between 3 Months and 6 Month but I have yet to see anyone have an upward trend in rate of log reduction seems everyones rate of log reduction decreases over time or stays the same never increases except with dose increase.

[JohnFromChicago]

Welcome. Glad you're here, but sorry you have CML. Staying busy helped me with my initial anxiety. I remember thinking, I've got to stop stressing over this. From what I understand, trending down is a good thing.

I couldn't agree more with keeping busy helps!. I try to stay busy at all times although I was somewhat this way before being diagnosed. My girlfriend thinks I need to relax more instead of staying busy but relaxing tends to lead me into more anxiety :\ 

[JohnFromChicago]

Welcome, you are doing very well, what drug are you on?  Good results.

Thanks! I am on Sprycel 100mg. I remember reading your 6 months results of .166 when you posted them and thinking we had a similar trend between initial PCR and 3 month PCR. I was hoping my 6 month PCR would be as good as yours but no such luck :\

[Widgeonus]

 

Thanks Kat!  I think I read Trey's Blog from top to bottom 10 times the night I was diagnosed haha I agree my current numbers are meeting the milestones (2log reduction at 6 months) but it seems If my log reduction rate continues with its current trend I would not reach the milestone of MMR by 1 year which kind of disappointments me :\

 

I should note that I did have my six month PCR at 76 days instead of 90. Given this I estimated that since I had a .28 log reduction in 76 days I would have had a .33 log reduction in 90 days. If my PCR continues to follow this trend downwards at the exact same rate I would not meet the Milestone of MMR at 1 year

 

Estimated   9 Month PCR = 0.26%

Estimated 12 Month PCR = 0.12%

Estimated 15 Month PCR = 0.06%

 

I know my estimations are just really a guess based on the trend of my PCR between 3 Months and 6 Month but I have yet to see anyone have an upward trend in rate of log reduction seems everyones rate of log reduction decreases over time or stays the same never increases except with dose increase.

 

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[JohnFromChicago]

Hi John, welcome. One of the best and worst things about this forum is that you have other results to compare yourself against. there will always be those that respond faster and slower then you, you just have to accept that. Its getting there and making progress that matters even a slight bump in the wrong direction isn't anything to panic about. you are young enough that you will likely live to see a cure for this disease I wish you the best.
Gorn

Thanks!! I tried to mentally prepare myself for this PCR and be realistic that even if I had a slight increase in PCR level it did not mean I was in any real danger and I would just need to stay calm and hope for a lower number on my next PCR. While I did not have an increase I was really hoping for a greater decrease that would get my PCR down to .1XX. I really hope you are right about a cure while the medicine itself I am very greatful has not caused me too much trouble I can not imagine worrying about this disease for the rest of my life.

[JohnFromChicago]

 

 

Thanks Kat!  I think I read Trey's Blog from top to bottom 10 times the night I was diagnosed haha I agree my current numbers are meeting the milestones (2log reduction at 6 months) but it seems If my log reduction rate continues with its current trend I would not reach the milestone of MMR by 1 year which kind of disappointments me :\

 

I should note that I did have my six month PCR at 76 days instead of 90. Given this I estimated that since I had a .28 log reduction in 76 days I would have had a .33 log reduction in 90 days. If my PCR continues to follow this trend downwards at the exact same rate I would not meet the Milestone of MMR at 1 year

 

Estimated   9 Month PCR = 0.26%

Estimated 12 Month PCR = 0.12%

Estimated 15 Month PCR = 0.06%

 

I know my estimations are just really a guess based on the trend of my PCR between 3 Months and 6 Month but I have yet to see anyone have an upward trend in rate of log reduction seems everyones rate of log reduction decreases over time or stays the same never increases except with dose increase.

 

 

Hi Widgeonus! I am curious where these milestone timelines are from. Most of the milestones I have read were MMR at 12 Months.

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[kat73]

John, I am laughing, fondly, as I contemplate your mathematical plotting of your future trending curve.  I know, from going back to my own early days, that when I tell you it doesn't work that way, your ears will not receive it and your brain will not process it.  Hence, the "fondly."  But here goes, anyway:  you are way overthinking this.  The PCR test and everything surrounding it, is not super accurate; they can fluctuate pretty broadly, for a number of reasons.  Also, there is no "rate" of response, no smooth curve, absolutely nothing you can interpolate mathematically from what has gone before.  There are dramatic drops, sudden swoops up, plateaus.  You'll see.  It is only the trend over time that matters.  Your onc will jump right on a log increase, especially if it repeats itself or continues upward.  Otherwise, you must relax about the PCR results or you will drive yourself mad.  I know your smart mind accepts this, but inside, your feelings are in turmoil.  You have joined our crazy club.

 

PS.  I also have to laugh about this:  I also was told to disregard any internet literature from the bad old days and only look at stuff written after 1999.  Now, I see that "sell by" date has shifted to 2009.  Funny, because that was my diagnosis year! 

[JohnFromChicago]

John, I am laughing, fondly, as I contemplate your mathematical plotting of your future trending curve.  I know, from going back to my own early days, that when I tell you it doesn't work that way, your ears will not receive it and your brain will not process it.  Hence, the "fondly."  But here goes, anyway:  you are way overthinking this.  The PCR test and everything surrounding it, is not super accurate; they can fluctuate pretty broadly, for a number of reasons.  Also, there is no "rate" of response, no smooth curve, absolutely nothing you can interpolate mathematically from what has gone before.  There are dramatic drops, sudden swoops up, plateaus.  You'll see.  It is only the trend over time that matters.  Your onc will jump right on a log increase, especially if it repeats itself or continues upward.  Otherwise, you must relax about the PCR results or you will drive yourself mad.  I know your smart mind accepts this, but inside, your feelings are in turmoil.  You have joined our crazy club.

 

PS.  I also have to laugh about this:  I also was told to disregard any internet literature from the bad old days and only look at stuff written after 1999.  Now, I see that "sell by" date has shifted to 2009.  Funny, because that was my diagnosis year! 

 

Thanks for the reply Kat! I was definitely laughing as I read your response I know I am now a full fledged member of the crazy club. I know it is only the trend over time that matters but like you said it just hard for me to accept. After work last night I spent from 6pm till about 11pm reading through every 0-3-6-9 Month PCR Result set I could find on the forum. I was hoping to find at least 1 case where someone had a dramatic drop from 0 to 3 months followed by a slight drop from 3 to 6 months and then followed by a dramatic 6 to 9 month drop. My girlfriend was less than pleased by this activity as she sat staring at me from the other end of the couch. After my 3 month PCR being 1.2% my oncologist assured us I was going to be just fine and my girlfriend had decided from that point on we would not worry or talk much about my cancer and just carry on (besides just taking my pill once a day) as if it never happened. Although she is probably right and this is probably the best approach I can not stop myself. I have read a few places the theory of the TKIs being able to take out the low level BCR-ABL genes while the high level BCR-ABL genes will take longer to remove. I do not find any comfort in this theory it makes me feel as all of my remaining BCR-ABL genes are high level and the Sprycel will take a very long time removing them. 

 

Oh and I know I know I am crazy level x 100!!!

[Widgeonus]

Hi Widgeonus! I am curious where these milestone timelines are from. Most of the milestones I have read were MMR at 12 Months.

 

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[Liamsdad]

Hi, John.  I'm a bit older than you, 55, but was also diagnosed in October 2015 as a result of contracting flesh eating bacteria while jet skiing in Melbourne, FL in July and my infectious disease doctor was concerned when my white count did not go down after treatment. Logically, I know that it is so early in on this but I am also anxious about my 6 months PCR test results - I had the blood drawn last Thursday so any day now I should hear something.  I was IS 105% at start of treatment, and 5.6% at 3 months so while we are both doing great, I hope when you compare you can see that your numbers are awesome!  I'm on Gleevec 400mg and have had many annoying side effects from water retention issues, gastro, nausea, muscle cramps, bleeding eyes, rashes, night sweats, intolerance to cold, etc, etc, but overall I still am able to get to the gym or run 5 miles every other day.  My doctor asked if I wanted to try another med but since I was responding so well to Gleevec I decided to stick with it until necessary to switch.  

 

Anyway, I've been lurking around here for 6 months as well and I can't thank this group enough for keeping me sane.  The solid information and humor from everyone here has meant so much to me - just knowing that there are others out there who get it! 

[gerry]

Thanks Gerry yes I am very careful with this I try to only read items published after 2009

I changed doctors at around 5 months and he wanted to do another BMB. I told him I was hoping for MMR. He was happy that he could tell me I reached CCyR. I had to settle for the CCyR. :-)