13 replies to this topic

[Mr.Tee]

Removed

[Floa7]

My son also has CML. I got Medicare quarterly reports of what they paid. I saw where Medicare did not pay for a PSA test that he had. Didn't even know the doc had ordered that test. He goes back to family doc tomorrow,  guess we will get the results tomorrow.

 

Good luck to you Mr. Tee

[Susan61]

Mr. Tee:  Stay positive.  The things they can do now for cancer are amazing.  My husband beat Prostate Cancer, and then Bladder Cancer too.  My husband had Brachytherapy ( seed Implant) for the prostate.  IT works just like our TKI's.  It targets right into the exact spot where the cancer was, and he is 10 years clean from it.  You could possibly just have a enlarged Prostate too.

[CallMeLucky]

My experience with this is anecdotal but I will share it.
About a year or so into cml treatment with Gleevec I was having some pelvic pain issues. During one of the work ups a PSA test was done and I was at 4.2, which was high for my under 40 year age. (Btw 10 is high, but depends on age and the scale goes much higher than 10). Anyway I freaked out and they ran some more tests and said it didn't look like an infection but they would be surprised if it was prostate cancer. I went back to repeat the test about 5 weeks later and I jumped to 6.2. I was convinced I had prostate cancer but the doctor insisted PC would not jump that fast. I did some more test, pelvic MRI, etc. no sign of PC but unexplained elevated PSA. As all this was going on I was having a tough time with Gleevec side effects and switched to Sprycel. A month or two later I had a PSA and it dropped to 2.4. A few months later it was 1.6 and a year later it was 1.4.

So what does all this mean? No one has a clue.
1) Gleevec caused elevated PSA? Doctors swear no but I talked to another guy who had a similar issue on Gleevec with elevated PSA.
2) I have/had prostate cancer but Sprycel is keeping it under control? Highly unlikely.
3) Elevated PSA was a random unknown issue and tki has no correlation? Seems odd but no better answer.

So that is where I am with all of this. A 10 is high but many things can cause PSA to elevate including enlarged prostate or infection. Benign enlarged prostate is more likely issue especially as you get older.

Do you have any symptoms?
Have you seen a urologist and had a physical exam?
How old are you?
Have you ever had a PSA before? What was the result? Why did they run this PSA?

Getting prostate cancer would suck but if managed properly it has a high rate of survival. So do your diligence, follow up and get checked and let us know how it turns out.

Good luck

[roamingdoc83]

That is a rough situation. Very sorry.

I've been on Gleevec since Oct, '09 ... PSA is  0.5

What I have discovered:  (leaving out the physical side effects)

1. Gleevec seems to effect "testosterone" production and/or availability in men.

2. Gleevec seems to effect "T3 and T4 levels, the Thyroid in general, in both men and women.

 

Low testosterone (I know, everyone is going to say, "no, it is the other way around") is being indicted in 'higher' than normal PSA and other prostate issues (including potentially cancer of the prostrate).

 

While I am only one male person, studies of us who use Gleevec (and I am not complaining, we'd all be dead if it or something like it didn't exist) show that almost all males see a decrease in their Testosterone (symptoms? Needing to urinate all the time, like every hour; fatigue; crankiness (what my wife calls it); weakness; issues with concentration/focus; gaining weight even on a diet!... many like that, you can look 'em up)

 

I noted early on that I was gaining weight, urinating all the time, was cranky, short term memory, fatigue, etc... I went back and look at blood work in '07, '08 (before I was diagnosed and, indeed, WBC was all good) and my testosterone was middling for my age (9-11 or so)... I did find an exam two years into Gleevec, I was 6.5... hmmm, well... but then I went to 5.0 and then 3 and then BELOW 3... really low. A lot of MDs, NPs, etc still harbor the idea that "testosterone" causes prostate cancer so it was hard to find someone who would listen, read and review... I did finally and then it was "bend over"... a shot, let's get this back to somewhere near normal. So I do a concoction of 'topical application' that keeps me around 8 or 9... I have no more need to urinate every few minutes, my wife likes me, I can remember things, i have more energy, lost 38 pounds and actually "feel like doing things" (all things...) Big difference... but now we are seeing my Thyroid going down! Yup... so, we'll watch and react. But PSA remains at .5 as my Testosterone is getting back to normal... BTW, it was 'climbing' as my testosterone sank.

 

Get your hormones checked... good luck with this rotten issue.

[hannibellemo]

Hi, Mr. Tee!

 

I hope this encourages you if they do find cancer. My husband was diagnosed with prostate cancer almost 5 years ago. He had endured prostatic hyperplasia for several years and although medication helped I'm sure he was miserable. His PSA shot up to 19 and he and his urologist decided a biopsy was in order. They did find cancer and even though his PSA was high his Gleason score was low (the PSA being the outlier). He went to Mayo Rochester for a second opinion and he ended up having robotic surgery there. That type of surgery was new here and we wanted someone who had lots of experience with Mr. Davinci.  

 

The removal of his prostate did remove all of the cancer and his PSA has been undetectible since.

 

Good luck

[roamingdoc83]

Mr Tee... often there is a surgical sharp item with the camera and a biopsy is done... not sure if that is what you are having. Over the past one year two of my very good friends have been diagnosed with prostate CA... low (what is called) Gleason scores (3,4) and more or less contained. It is nerve racking and there are a myriad of treatments available. One of my neighbors has been thru 'almost all' of 'em.

He now says "he'd have done it differently"... He has a robotic surgery done several years ago (2007 not sure if it was da Vinci)... for seven years no, none, zip PSA... then it came back. Without a prostate the presence of 'any' PSA is not good. Directed and broad beam radiation was done, 43 treatments... ended in Oct... Dec showed some PSA... early January, none. Hoping and praying. This neighbor says he might 'reverse' the treatment if he was to do it over again (his 'two cents'), directed beacon based radiation and, if needed, core later. But... our other neighbor went into a local hospital for the 'flu', developed pneumonia, then MRSA and sadly just passed. All in ten days at the age of 64... life can be a challenge. Good luck with all this, hang tough.

[CallMeLucky]

Interesting note about the testosterone, mine is low since being on tki
My urologist wants me to see another uro who specializes in low T and try to figure out what to do next.

[tadly]

Mr. Tee,

 

My PSA went up to 8.8 last year, then went down to 7.0.  I'm 67 and digital exam revealed  a very large prostate. My cancer center started with an MRI of the prostate and no suspicious areas seen.  Followed by an ultrasound guided biopsy last month.   12 biopsy cores and no cancer found.  Whew!!!  I was fascinated looking at the live ultrasound during the procedure of my prostate on a big flat panel.  Enough local anesthesia so I didn't feel the cores taken, just the sense and sound of a "click".  But it got pretty sore later and for a handful of days.  

 

My urologist-oncologist does a lot of robotic surgery.  I was also looking into active surveillance, before the negative finding.

 

I had AML 4  years ago, a stem cell transplant and in remission since.  So a different history of blood cancer before this.  My testosterone has been low for a decade before this.

[kat73]

I'm awfully sorry you have to be caught up in the procedure march.  The weeks and weeks (if not months) spent waiting for the procedure, then enduring it, then more waiting for the answer, then maybe another test - repeat above.  Not to mention the waiting in the room alone in your gown and the LED lights, rehearsing your questions/speeches, then the quick knock followed by the breeze of white coat flapping and clipboard paper flipping, and those few short blunt words that follow and that you don't really hear, maybe good, maybe bad.  I never get used to it.  It is truly hell on earth and there is no escaping it, and although it sometimes can be made worse it can scarcely be made any better.  It just is what it is.  Sitting on that table I often wish so hard I was 10 years old again and didn't know any of this, or that I could be transformed into an eagle or a mouse or a flower - anything to just have the obliviousness of not caring, not knowing.  Ah well, enough of that.  I wish you good news at the end of your waiting!

[kat73]

I do so hope you get news you can live with - the good kind.  Reading back through this thread, there seem to be as many different stories as there are patients, and a lot of good outcomes, even when things looked bad.  So, hang in there, and we'll all send hope.

[Buzzm1]

I guess I need to find a new group, it's prostate cancer, just like my father before me. I still feel however that the CML is the larger of the 2 threats. I can have the prostate cut out and hopefully the problem is gone but the CML lingers on and on and on...

Sorry about your bad news Mr. Tee.  Stay strong and stay with us to tell us you have reached MMR and PCRU.

[CallMeLucky]

Sorry to hear that, rough deal getting caught twice with two different cancers.
Good luck with the treatment, stay hopeful these are both treatable.
Hang in there....

[kat73]

Two cancers.  Yeah, I'm with you. Right now this probably seems so cosmically unfair that you're ready to explode.  Rage and tears!  Mine was breast cancer - three times before a mastectomy was unavoidable, with the second two times after the CML dx.  The truth is, you will deal.  Eventually.  I heard something funny last night, that Nora Ephron said:  "I don't think you learn anything from failure, except perhaps that it could happen again."  I loved her - she was so un-PC.  I don't personally see any silver lining to having cancer - it has not made me a better person - I'm the same old person I always was, only unhappier!  Maybe you will be a better man than I, Gungha Din.  At any rate, here you go on another adventure down the Rabbit Hole.  (To mix literary references!)  Right now, try to hold onto one operating principle:  do not allow yourself to fall into despair, expecting the worst to happen.  You do not "know" what the future holds.  You must not waste your resources on imagining the worst.  Keep them focused on imagining the best.  Keep us posted.  Everybody here is pulling for you.