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Elevated PSA levels


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#41 CallMeLucky

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Posted 26 September 2012 - 02:16 PM

So I met with the urologist to get the results of the repeat PSA.  The first test was 4.4 and I was hoping for some decrease in that number in line with an infection that is clearing out from the antibiotics I took.  The repeat test showed PSA of 6.6!  I almost fell out of the chair.  I had my wife with me this time and she was helping me to keep it together.  The doctor said he really doesn't think it is prostate cancer despite the elevated PSA.  He said he was actually happier to see it go up then stay at the same level.  He said if it had stayed at 4.4 he would have done a biopsy but because of the increase he is thinking it may be something else.  He said that with Prostate cancer there is a steady trend up.  He said a jump from 4.4 to 6.6 in 4 weeks is not something you would see with cancer.  He said this is more in line with what you see with infection.  However he said if it was an infection then the antibiotic he gave me should have cleared it out and my urinalysis does not show any infection (they are going to send out for more thorough cultures).  I also asked if the jump could indicate a cancer that had spread outside the prostate and he said in that case he would expect to see the PSA "in the hundreds".  The doctor said based on these results he wants to move to imaging to explore any "anatomical issues"  So I am going for an MRI tomorrow.  I will get the results of the imaging on Monday and we'll decide what to do next.

I feel both better and worse at the same time.  I had actually said to my wife half joking on the way to the appointment "now don't freak out if it jumps up, that could actually be a good sign because it might mean there is an infection".  Still, I wasn't expecting it and while it seems like this is better it still doesn't feel good.  He also pointed to the fact I have a lot of pain which is more indicative of prostatitis.  I'm still really freaked out.  2 years ago I went for a physical and my blood count was elevated.  They had me come back and the number jumped up higher and that was cancer.  I know these two situations are not comparable, but it still feels similar.  Of course in that case no one was telling me they didn't think it was cancer, in fact everyone was telling me it was almost certainly cancer and the only question was what type.  In this case they are saying probably not, so I am trying to find some hope in that.  Of course now I am worried about what they are going to find on the MRI.  The worrying never stops.

On a side note I saw my onc last week and made the decision to change TKI drugs.  I am going to switch to dasatinib 100mg in November.  I am going on vacation at the beginning of Novemeber and I didn't want to switch before hand in case I had any problems.  I am also going to come off Gleevec while on vacation to get it out of my system before I start the new drug, who knows maybe I will get some relief when I stop taking Gleevec.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#42 scuba

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Posted 26 September 2012 - 02:53 PM

Hi Gary - Wish you well on the MRI/PSA testing. On Dasatinib - note that 100mg is full dose. I am asking Dr. Cortes about full dose for someone switching from Gleevec who is at PCRu. I'm curious if he prescribes full dose transfer from one TKI to another when a patient comes to him in CMR but needs to switch.

I have a week or so to wait on my latest PCR test. If I go PCRu on 20mg. Dasatinib - that might be of interest to you.

(p.s. You don't have prostate cancer!)


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#43 Trey

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Posted 26 September 2012 - 03:15 PM

A new test for prostate cancer was just approved by the FDA this month:

http://www.cancer.go...n/091812/page10

I would expect that Bosutinib will one day be approved for use against prostate cancer, and possibly also Sprycel.  This is because of the SRC kinase inhibition.

http://www.ncbi.nlm....pubmed/20367532



#44 CallMeLucky

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Posted 26 September 2012 - 03:25 PM

Yeah, I guess I am kind of doubling down on the Sprycel.  If there is Prostate Cancer, maybe the Sprycel will help.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#45 PhilB

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Posted 26 September 2012 - 04:46 PM

Hi Lucky'

Keeping my fingers crossed for you, but sure it will all be fine.  I know jsu how scary it all is, but the odds are pretty huge that it's something much less worrying.

If, on the other had, Trey's original idea is the right one then your latest test would mean you'd gone up from 5 time to 8 times 0.8.  In which case I take my hat off to you, and siuggest you buy Mrs Lucky some much less exciting undergarments.

Phil



#46 CallMeLucky

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Posted 26 September 2012 - 05:03 PM

Thanks Phil if only that were the case at least my stress level would be reduced, LOL.

I just got off the phone with my GP.  After the urologist spoke to me he said "you need to talk to your GP, I'm not qualified to treat anxiety but it is even clear to me that you need something to take the edge off until we get this figured out".  My GP called in some Zanex for me and said to use it as needed until things get resolved.  She then told me that she had also spoken to the urologist and he was emphatic that it was not cancer.  She quoted him as saying "there is no way this is cancer, i's just not, I know its not but I have to walk through all the tests to rule everything out".  So I guess I just have to try and take them at their word and hope for the best.  I need to stop reading stuff on the internet because all I find are posts from people who had similar situation as me and then it turned out to be PC.  I have to remember that for the people it was not PC they probably didn't post anything about how it all turned out alright.  I'm still on edge, hopefully Zanex will help and I will ride this out.

On the flip side I called my oncologist and she called me back and said I should come to MSKCC to see a Urologist on Friday because she was "concerned".  I said I was scheduled for MRI tomorrow and would have results on Monday.  I didn't think it made sense for me to go in on Friday because I would tell them I had an MRI the day before but don't know the results.  At that point they wouldn't be able to do another MRI and I don't want to rush into a biopsy.  If by some chance they look at the MRI and say "wow your prostate is huge" (to which the only response is "that's what she said") then I might have some indication as to what is going on.  He said he is doing imaging to rule out anatomical issues and causes of inflammation.  I figure once I have the two PSAs in hand and the MRI then I can go to MSKCC and sit down with the urologists there and move on to the next phase of testing.  My onc being concerned, concerns me, but for now I have to hope the urologist is right, he seems pretty certain it is not PC, but I can't shake this feeling something bad is going on - I guess that is what the Zanex is for.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#47 ChrisC

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Posted 26 September 2012 - 08:41 PM

Further interview with Dr. Hans Selye:

http://www.tm.org/bl...ther-of-stress/


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#48 Guest_billronm_*

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Posted 26 September 2012 - 11:09 PM

Hi Lucky,

  I've been through 2 bad episodes of depression. And it's a trip to hell. Everybody probably goes through some sort of depression, but when you have been through a serious depression the only people who truly have had it know how terrible it is.  And when people tell you to get a grip or pull yourself together, they just don't understand that you just can't. When you started having all your problems and just one tragedy after another and the health scares, I suspected just by reading your posts that you were heading in that direction. Hopefully the xanax will help you with your anxiety. But you probably need an anti-depressant for a while. I have been fighting clinical depression and panic disorder for over 30 years. I've been told it's hereditary my mom and her mom had it also most of my family on my mothers side have some kind of problem, but they have never gotten as bad as I did. I've had every test possible on my brain, nothing there that's no surprise. Cardiograms, echocardiograms, all fine. I was lucky enough to have a good psychiatrist, and a couple good therapists. I guess they helped. My shrink retired so I am now shrinkless, my pcp prescribes my meds right now. I never got much support from my family, but this started when I was in my 20's and I knew I needed help and I went and got it. That was the smartest thing I ever did in my life. So if the xanax doesn't help go see a pro. No matter what anybody else says. And don't listen to this crap about xanax, or valium and other anti-anxiety drugs being addictive. As long as you don't take more than prescribed you will be fine. The script always says as needed. So just don't take it if you don't need it. And just listen to your dr. not other people. I have xanax I take occasionally, and I only take half of one and if I can't calm myself down I take the other half. During times of stress.

   I can't write anymore right now, because my husband Ron is in a bad depression and I can't help him. It's tearing my heart out. You know he's been getting a bunch of tests, we still don't have an actual dx. I can't stand seeing him like this. His pcp put him on 10mg celexa a day and a half of a 0.5mg of ativan once a day. He needs something more right now but he won't let me call the dr back.

He's lost over 25 pounds I can't write anymore.  Please take care of yourself   Sincerely Billie



#49 Guest_billronm_*

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Posted 26 September 2012 - 11:12 PM

Hi Phil,

                   How ya doing?    Hugs to you and your family.                                   Billie



#50 ChrisC

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Posted 27 September 2012 - 01:18 AM

Hey Gary!

So glad that the situation is getting proper attention. Whew. AND that you are getting something to take the edge off it (what, wine doesn't agree with you?). Through it all, you are YOU, and yes, you have some sense that something is wrong, somewhere. You've put it in the hands of the doctors to find out what it is: GREAT that they are saying it ISN'T PC!!!! You've batted the ball back into their court, they have to figure it out. You are off the hook. Yay!

You are fine, a continuum of you-ness, and you can focus on what you LOVE (family, etc.) — never mind what you fear. It IS a choice, you know. Keep your attention on what you want, what you love, and that is what will increase in your life. It works!

And thank you for keeping us updated, you are in our thoughts. We are indeed feeling encouraged with the current state of affairs, though preferable is that it all just disappears. [Oh?! How did that happen?!]

Hey Phil!

You too: you are doing many things right! Carry on, and all success in enjoying life in its fullest!

Hey Me: it's been just over a year that I've been off all medication. Yay! Next week I go for my next PCR, more than four months since my last PCR test (all the one-month-apart PCRs were still 0.000).

Since dx, all my PCR tests have always used Quest. Now I read that they are on IS. Ooooohhh, what will this PCR be?

Their reports since Sept. 2009 have all said "over five-log reduction; 0.000" and I say "PCRU."

There are, of course, some continued statements I read here that we all still have millions of BCR-ABL cells present in our systems even when our reports show 0.000. But that isn't my focus. I prefer to see zeroes!

Okay, fine, we'll see; we'll take it as it comes. But I will hope for the best: it has been amazing to gradually adjust to "What, no, I don't have CML anymore." I could carry on like this, and I hope to just have to figure out how to adjust to getting older physically: that in itself is enough to put a damper on things, I say.

All the very best to everyone, you are all in my thoughts and heart, and I send you wishes of great good health and happiness, always.

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#51 TeddyB

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Posted 27 September 2012 - 12:51 PM

CallMeLucky:

So it seems it is not PC, that is great news!

Try to relax and dont feel bad about taking something to ease the anxiety, almost everyone needs it from time to time. And even if you dont take any, its good just to have it nearby in case you need it. I have some pills too, to help me relax if i need them, but so far i have just kept to my glass of evening wine

I am still keeping my fingers crossed that it isnt anything serious.

Billie: Keep us updated on your husband, sending good thoughts your way.






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