Jump to content


Photo

Good news and worrisome news on the same day


  • Please log in to reply
11 replies to this topic

#1 Widgeonus

Widgeonus

    Advanced Member

  • Members
  • PipPipPip
  • 47 posts

Posted 01 June 2016 - 03:22 PM

Got my PCR numbers back and came in at .01% MD Anderson Scale (.003 IS), but my PSA prostate screening came back elevated at 8.4 again (normal is .1 to 4.0). 6 weeks ago I had a prostate biopsy and everything came back negative, but since my PSA is still elevated, doc wants to do an MRI. 

 

I swear, if it's not one thing it's another. My state of mind is pretty much back to where it was when I was initially diagnosed with CML. I'm 38 years old and the past few years have been a roller coaster and it's truly weighing me down. 



#2 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 01 June 2016 - 05:07 PM

All I can say is good luck with the MRI, hope the results are negative for prostate cancer.

#3 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 01 June 2016 - 05:44 PM

Your levels are not "that high" in terms of cancer - and since the biopsy came back negative six weeks ago, there are likely other reasons for elevated PSA. 

 

I had a normally larger prostate 3 years ago (but normal PSA) which I was told was normal for my age. It was at the same time I started to get serious about nutrition - specifically zinc, selenium, lycopene and vitamin D3. After three years of focussing on my health from a nutrition point of view, my last prostate test showed the enlargement disappeared and my PSA was even lower than before.

 

Look at your diet and ask yourself - are you eating foods or supplementing if you don't - is your vitamin D level between 40-60 (minimum)? You may very well have chronic prostatitis. 

 

What is your blood vitamin D level?


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"


#4 Widgeonus

Widgeonus

    Advanced Member

  • Members
  • PipPipPip
  • 47 posts

Posted 01 June 2016 - 05:52 PM

Your levels are not "that high" in terms of cancer - and since the biopsy came back negative six weeks ago, there are likely other reasons for elevated PSA. 

 

I had a normally larger prostate 3 years ago (but normal PSA) which I was told was normal for my age. It was at the same time I started to get serious about nutrition - specifically zinc, selenium, lycopene and vitamin D3. After three years of focussing on my health from a nutrition point of view, my last prostate test showed the enlargement disappeared and my PSA was even lower than before.

 

Look at your diet and ask yourself - are you eating foods or supplementing if you don't - is your vitamin D level between 40-60 (minimum)? You may very well have chronic prostatitis. 

 

What is your blood vitamin D level?

I do not believe I have ever had a reading for Vitamin D. Don't think it is part of the normal workup that my doc at MD Anderson does.



#5 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 01 June 2016 - 06:05 PM

I do not believe I have ever had a reading for Vitamin D. Don't think it is part of the normal workup that my doc at MD Anderson does.

 

vitamin D testing is typically done through a "wellness doctor" or through a lab testing independent of a doctor: https://www.anylabtestnow.com/

 

You can ask M.D. Anderson to add the test to your blood work. I have done that several times at M.D. Anderson - but it is cheaper to do through an independent lab.

 

Eat lots of veggies - avoid sugar and get your vitamin D level up to around 50 (I keep mine above 70 because I have CML) and your prostate should be fine. 


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"


#6 beno

beno

    Advanced Member

  • Members
  • PipPipPip
  • 92 posts
  • LocationIowa

Posted 02 June 2016 - 09:40 AM

My family doctor tests all her patients for vitamin D.  She feels it is very important because low vitamin D levels can impact so many of the bodies functions.  It's not expensive and it certainly can't hurt you to have it checked out.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#7 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 02 June 2016 - 11:04 AM

Widgenous - So many of us can relate to your roller coaster status.  It truly does indeed get you down.  You're doing great on the CML front, and then, bam, you've got something else threatening and worrisome.  Hang on to the biopsy result - it's probably more important than the PSA number.  Or at least it's evidence for the "good" column.  Good luck on the MRI and let us know.  There are so many lab results that look abnormal on TKI's and yet don't actually indicate a problem, as they might in a non-CML person.  Things like thyroid, glucose, creatinine - all of these and more can come back elevated or too low, temporarily or forever, and yet they are essentially false readings.  Something is going on, the TKI is "bothering" an organ, causing inflammation or whatever, but there's no actual disease process going on.  We understandably worry about what effect decades of this "bothering" might cause, but we can't stop our TKI's, and so must wait and see.  Anyway, my point is, your PSA might be elevated falsely in this manner - I'm just speculating, mind you! - so try and not freak out until such time as a freak-out is called for.  Hopefully never!


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#8 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 02 June 2016 - 04:08 PM

The best of luck to you, Mr. Tee!  May you sail through with no complications, and the dragon vanquished.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#9 Melanie

Melanie

    Advanced Member

  • Members
  • PipPipPip
  • 219 posts
  • LocationArizona

Posted 02 June 2016 - 06:42 PM

Congratulations on your PCR test! Hoping the prostrate is an easy fix and really not an issue for you!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#10 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 03 June 2016 - 08:12 PM

Widgeonus, congrats on your MD Anderson 0.01% CML PCR reading and best of luck with your upcoming prostate MRI.  


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#11 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 04 June 2016 - 04:29 AM

W

 I know what you,re talking about, one thing after another, is it cml or tki or age, or just plain bad luck hang in there somehow we do make it through all this crap. I haven't been on he board lately I've been dealing with a bunch of issues myself lately, but I'll be back.

      Good luck Billie



#12 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 06 June 2016 - 01:38 AM

Good to hear from you, Billie! How are you doing?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users