CSN Login
Members Online: 4

IADT- vacations period very close to its end

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Updating my case

I received today the periodical PSA test results indicating a significant increase to PSA=1.04 ng/ml.

This compares with the previous 3-month results of 0.85 which corresponds to a PSADT of 12 months, but I see it to become shorter in a matter of time. My lay opinion is that the cancer started its “free ride” on spread, probably already at bone.

I have no picture of the bandit so I am just guessing but since January that I got some “discomfort” in my lower back, which sensation I do not know if it is due to cancer or for the hard physical labour I did in pruning big olive trees at the passage of the New Year (???).

The testosterone results surprisingly become much lower at 289 (ng/dL). It was 486 in the previous 3-month test. I have no rational explanation for the facts but an increasing PSA in a lower testosterone is not a good statistic. The total cholesterol is low at 142 (ng/dL), probably due to daily statins that also influence cancer activity. Other markers are the high Creatinine at 1.42 (ng/dL) (kidney problems) which I am following with a ultrasound investigation. This could also identify something causing the lower back sensation.

As reported before I am giving time for the PSA to rise to levels above 2 (ng/ml) so that I can rely on a C11 PET/CT examination. I want to take this opportunity before ending the IADT vacation period in my treatment but I started to freak out and, sincerely, this anxiety is not a good feeling.

Here are links of my case in previous threads;
http://csn.cancer.org/node/265316
http://csn.cancer.org/node/253261

 

Best wishes to all comrades in our boat.

VGama  Undecided

 

Beau2
Posts: 232
Joined: Sep 2010

Vasco,

Sorry to hear about the possible end of your vacation and possible kidney problems.

I am picturing pruning olive trees and have decided that sounds like a warm weather and enjoyable way to get a sore back ... beats shoveling snow, and the results last longer.

I am guessing your creatinine was 1.42 mg/dl and not 1.42 ng/dl .... or your value was very low (normal range for a male is 0.7 to 1.3 mg/dl). Also, I believe I have heard of statins increasing creatinine ... any muscle weakness?

Good luck and best wishes.

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Beau

Thanks for the correction. The creatinine is 1.42 mg/dL and the glomerular filtration rate (eGFR) is low at 53.8, which sets me at Stage 3 (moderately reduced kidney function). I did not know about the influence of statins in creatinine levels, and muscle conditions. In fact, since the beginning of this year, that I am experiencing nocturnal leg-cramps.
I have associated the occurrence with the stressful physical activities I have been doing lately in my property. For two months I have been cutting weeds, t******** trees, doing some tree grafting, earth moving, plantations, etc. This is my new hobby and I am enjoying it, but it is hard work. It nails me to the bed fast asleep.

I am taking Sinvastatine 20mg on/off periods as a means to control cholesterol. Just started the off phase. Apart from this pill I also take daily aspirin 100mg. I am not taking any supplement and I have been not that careful with the diet. Living in the countryside makes you to enjoy sometimes local farm cheeses and red meats. The lovely red wine serves as a cleansing. Innocent

Can you provide me more tips about the kidneys condition?

Best.

VG

Swingshiftworker
Posts: 626
Joined: Mar 2010

Sorry to hear about the rise in your PSA and the apparent end of your IADT vacation.  Hope that you are wrong and that the PCas has not spread to the bone and hope that you are able to find a way to get the cancer under control again.

 

Beau2
Posts: 232
Joined: Sep 2010

When I was on zocore I had sore legs (calfs). Doctor took me off of that statin because he thought it might be myopathy which could also cause an increase in CK. He checked my liver functions (as well as other tests) and found I did not have myopathy ... probably myalgia?...

I am now on 20 mg of Lipitor and have no problems with sore legs, although I do understand that some people do have sore legs when they take Lipitor .... especially if they take high doses. I have also read that some people are sore in other regions of the body when they take statins (back?). Indeed, when I had the leg problems with the zocore I did a search on line and was surprised how many people had significant problems they attributed to statins.

FYI cialis will give me a sore back ... any chance you take cialis?

You must have a beautiful property. I liked your description of your recent projects. Peaceful.

Good luck and best wishes.

traveler
Posts: 21
Joined: Jun 2011

VG,

I was sorry to see your last posting, i guess there is still a chance that this rise is part of a start stop slope that can occur as you witnessed in your early stage of rising PSA. I wonder also if the back pain is more likley phyisical than sign of a met. I know that when my PSA started to rise i felt pain and it was in my lower back on the right side and the small leasion when found was on the left side and my Oncolgist said it was not possible for it to be refered pain. The mind can play tricks on us in these periods , know that you are very knowledgable and have helped many so i would take time to see what happens next, Steven Tucker alsways says to me not to make decisions based on one number. 

Be positive and focus on the garden and see what come in 30 days time. I know you will have a treatment plan in mind and i wish you all the very best in your continued fight with the bandit.

Best regards

T

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Today it makes two years (24 months) since I started my “vacations” away from hormonal drugs, and 30 months since my last Eligard 45mg shot.
The PSA is rising since the loss of the effectiveness of the drug, now at 1.20 ng/ml. The progressive curve indicates that this value will reach the threshold of 2 by December which is the level at which I want to get a C11 PET/CT scan.

My uro-oncologist has set the marker of PSA=2.5 for restarting the hormonal treatment. According to the data of today, this number is expected to occur by May 2015, meaning that I would accomplish a period of 3 years of quality living free from the side effects I have experienced during the ON-drugs period of 18 months (Nov 2010 to May 2012). Libidoless and fatigue were the worse. I wanted 5 years of vacations. It didn’t happen but I am satisfied.

The testosterone has been in an erratic curve, this time at 341 ng/dL. It was 376 before starting the Eligard, it went down along the 18 month of the On-drugs period reaching the lowest level of <1 at the beginning of my vacation (May 2012) and since then it increased reaching a maximum of 490 last September. The testicles returned fully to its original size so I believe that in my case the present testosterone is just my natural level. Some argue that this is a low level for a 64 years old (?).

In following my above post, I have checked with the specialists and was found OK in regards to the kidneys problem. My back pain is gone too and now I am waiting for the consult with my Uro-oncologist scheduled for May 20th. The subject will be in regards to the image study that could give me still hope for a cure if cancer is found in few numbers located at places that could be spot radiated.
I am hopeful he accepts my wishes even though I think he is not a “fan” of the so called theme Oligometastatic Cancer.

Best wishes to all my buddies.

VG

tarhoosier
Posts: 181
Joined: Aug 2006

It appears that Combidex is now again being used at Nijmegen, NL By Dr. Barentsz.

See:

 

http://www.healingwell.com/community/default.aspx?f=35&m=3006017

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Tarhoosier

Thanks for the post. I have been in contact with Dr. Barentsz but Combidex handles detection on soft tissues. In my situation I would like to try a wider scope with a picture of bones and soft tissue. The PET/CT examination provides that in one goal.

In any case, I am very interested in the type of contrast agent used in the procedure because I believe that my case is due to micrometastases. C11 choline is feasible for larger tumours above 4 mm. This could correspond to PSA values above 1.5 in typical cases, but each patient and cancer is different with some producing lesser serum. Micrometastases are made-up of colonies of smaller sized tumours which makes it difficult to detect in traditional scans.

My goal is to get a positive result not a false negative. Therefore, I am waiting to the PSA to increase further so that the chances for a successful image study will be wider. I want to do it before restarting the HT program, but I am concern to let a free ride of the bandit in my system without any control for too long.

I also participate in the above discussion of your link.  Lausanne trial study uses a newer contrast agent making this examination not so dependent of the size of the tumour when using traditional PET/CT machines. My problem is to be accepted into that trial. The access is limited and the friends of the friends will get priority. I am a simple European citizen.

Appreciate your concern and info very much.

Regards,

VGama

kmclark1
Posts: 12
Joined: Dec 2013

VGama

While the rising PSA is not the greatest news in the worl, it appears to me you have an reasonable plan to move forward.  Your search to obtain a true picture of your situation is to be applauded.  TO me a false negative is worse than a true positive.  ANd thanks for the time you take on this discussion board.  It offers vauable information and helps others on insisting on being a true advocate for themselves.

 

God spped.

 

Mike

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

In continuing with news about my case; I received today the results of the tests done in the last (delayed) consultation with the uro-oncologist. It come as a negative scintigraphy bone scan and a lower PSA of 1.15 ng/ml. These were done at the facilities of the hospital in Lisbon, which laboratory I have never used for testing the PSA. It is therefore not practical to compare with previous 1.20 PSA result (done at my usual Laboratory) but I may judge the situation as a constant slow increase that may extend the timing for my expected image study and restarting of HT.

My doctor relates the back sensation to a sort of myalgia or neuropathy. It could have provenance from the hormonal treatment or other medication (statins as commented by Beau). The bone scan was done to “satisfy” my curiosity (doctor’s speech). The next appointment is scheduled for April 2015. This may change with the timing of the trigger threshold mark of 2.5 in PSA decided for restarting HT. He also commented about the possibility in lowering the ADT protocol to take a solo antiandrogen, on intermittent basis. This is surprise information because I am used to read about increasing not decreasing in the fight. He sees my HT (ADT) as a success for the long period on OFF-drugs (26 months).
 Any image examination (Combidex, C11 or F18 (Na) PET/CT, including the Lausanne trial) is pending due to the sluggish progress of the PSA.

In three weeks time it will be the 14th anniversary of my radical prostatectomy, my first treatment in 2000 to kill the bandit. So far it managed to survive and hideaway but I still believe in that day I will confront it in a duel face to face, just like in “The good the bad and the ugly”. My doctor is the uglier. I am the good but no better than the bandit. Just smarter and shoot faster.

Another excuse for a glass of red.

VG  InnocentKiss

Fred191
Posts: 5
Joined: Jun 2014

Dear VG

I'm glad to hear that your bone scan was normal, you have been helping many of us with your experience and advice. God bless you and wish you victory. You are the "better"

fred191

tonybuxton
Posts: 78
Joined: May 2012

V.G.

You are an inspiration to all of us. And I have taken some of your valued advice. You still seem to be having a good life. Never give up hope.

As you know I am 83. But I have found a very good cancer radiologist in Bangkok , but it means a 4-5 hour drive to get there. He told me sometime back that  I worry too much about my cancer. So I have stopped worrying and live  a much more relaxed life. I now eat steak red wine and cheeses and my PSA has gone down..

I sincerely hope that you will eventually conquer your cancer one day.

very best wishes

Tony

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network