PSA 1550

Thank you for your support.  I know no one can really predict life expectancy, but I keep reading such conflicting information, its very difficult.  We're happy that he's responding well to the HT, but his PSA was up a couple points last month, so we're nervous about the next result. He seems to be having more bone pain too, it's hard to tell what's just general discomfort and what's bone pain.  What a scary journey.

VascodaGama said:

Try setting up a monitoring program

Sid,

Welcome to the board. I hope he manages to get the longest life expectancy possible but with quality of life.

Can you share more details on his diagnosis and treatment protocol? What is the Gleason score?

You said that his PSA has risen from a nadir. Can you tell more about the PSA histology?

The worrisome goes to the metastases in organs, the liver in particular, but you comment these to be in the lungs. I know of several patients that have dissected the metastases in lung successfully. This is treatable if only a fewer number of spots are involved.

The hormonal treatment is palliative but in the hands of good oncologists these can hold the bandit for long periods of time. There are he so called second-line ADT to replace the ones that stop working or immune therapies to extend their effectiveness. You need to be vigilant not just with the cancer but with any deterioration of other functional organs like the heart, kidneys and liver that will be affected by ADT drugs and manipulations.

Your husband needs to set a sort of monitoring program to avoid deterioration, involving diet, physical exercises and periodical tests (testosterone, estrogens, bone densitometry, vitamin D, etc) along with the PSA to check for the functionality of other systems and to verify the effectiveness of the ADT before it becomes refractory. Intermittent approaches may be useful to prolong the period of the hormonal treatment.

Doctors typically, in stage 4 patients, treat the pain in bone with spot radiation. This cannot be done at the same area twice so that one must choose the most affected areas.

A good book for you to read is;

“Beating Prostate Cancer: Hormonal Therapy & Diet”, by Dr. Charles “Snuffy” Myers.

Tell us more and will try helping you with comments based on our own experiences.

Best wishes and luck in his/your journey.

VGama

 

So first PSA was 1550, drawn after he was having frank blood in his urine.  His GP immediately ordered abd CT which showed significant cancer in prostate and other suspicious areas.  Bone scan showed ca throughout his pelvis and upper right femur, also in his shoulder blade, and a few spots on ribs.  CT showed significant lymph node invovlement throughout, esp mediastinal area, and several spots in lungs.  We have an excellent urological oncologist and he did a cystoscopy and transrectal ultrasound an biopsy (took 12 sample, all were positive).  Gleason score of 9.

Started with Lupron every 6 months, Xgeva monthly and casodex.  See urological oncologist every month and have a PSA each month.  While PSA is still really high, it has come down each month from 1550 to 422 to 212 to 71 to 32 to 28 to 22.3 but now up to 24.  He has a PSA this week and if it's up again, will look to change meds.

Anticipate radiation for bone pain, but dr doesn't want to use this too soon, as you mentioned it can only be used for one series in each area and he wants to wait until pain is worse.

Doesn't talk much about chemo, made it sound like that is a bit of a last ditch effort and my husband isn't overly interested in that.  

Also saw a medical oncologist who agrees with current plan.

He has general discomfort but not intense bone pain yet.  He has extreme fatigue, though it is better than it was in the winter.  Luckily he is retired, so can rest when tired.  He does try to stay active and does some light weight lifting, but not able to do much more.  Can't walk long distances, etc.  This is a man who has been incredibly active all his life.  

Apprexpiate the book recommendation, will definitely get this one. 

Many many thanks for your input and information.  Much more detail than I have heard before and much appreciated.

Very sorry to hear of your diagnosis, what a miserable thing cancer is, turns your world upside down.

We have said the same thing, my husbands goal is to keep things as "normal" as possible.  There are a few silver linings, a little easier to keep things in perspective, we're very intentional about how we spend our time. And people are so kind...family and friends alike.

This site is very helpful, wish I'd found it sooner.  I do wonder if others have had a PSA as high as my husbands...when they first told us it was 1550, I thought it must have been a mistake.  Have you heard of such a high level and would you interpret that as a bad sign.  We do realize that he has probably been sick (had ca) for a couple years and we just missed the signs and symptoms.  Hind sight

Thanks G53, it's helpful to hear other extremely high values. 

PSA drawn yesterday and is up again.  So had been coming down steadily to a low of 22.3, then up to 24 and yesterday was up to 26.3. We see dr Tuesday.

VascodaGama said:

AAWR

Sid,

I am sorry to hear about the increase. I would recommend you to discuss with his doctor next week about the need in stopping the Casodex straight, substituting it by another antiandrogen.

The matter regards what is called "Antiandrogen Withdrawal Response" or "Androgen Withdrawal Syndrome" that occurs when the cancer has mutated the AR and starts feeding on the Casodex itself. The issue is seen initially with an increase in the PSA (refractory) that starts to fall once the Casodex is stoped. Casodex is made up of a similar biostructure as the real stuff so provoke absorption by the cancerous cell, faking the real androgen. The syndrome can last 4 to 6 months with lower PSA results. After that one must start taking another antiandrogen or change to the second-line ones like Xtandi.

Here are some materials for you to read and prepare the questions for your next meeting;

https://pcri.org/-aawr-the-anti-androgen-withdrawal-response

https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-1-21

https://www.researchgate.net/publication/257461567_No_Androgen_Withdra

wal_Syndrome_for_Enzalutamide_A_Report_of_Disease_Dynamic

s_in_the_Postchemotherapy_Setting

Best of lucks.

VGama

Appreciate the suggestions.  Saw the dr yesterday, ordered a repeat bone scan (due to additional bone pain husband is experiencing), will do a prostate specific PET scan when the technology comes to our hospital (November) and moving from Casodex to Xtandi.  

Thanks for sharing your background, very helpful.  What type of chemo did you start on? 

We did see urologist this week and he will start him on Xtandi, once approved by insurance, and take off Casodex.  He had a repeat bone scan which thankfully showed no new spots.  We knew his PSA would start going up again, oncologist told him it would not get down to normal, but we were hoping the firs treatment would last longer.  He was on casodex for 6 months of monthly injections, and he's also on Lupron every 6 months.

I sure appreciate this site, I've learned far more about Lupron here than from dr.  I was getting so worried about hubbys confusion and forgetfulness, he's 58 but some days seems much older.  He is amazingly positive most days, though he's hitting most of the side effects I've read about...extreme fatigue, weight gain, breast tenderness, and of course the total loss of libido etc.  But overall, it could be worse and we are so relieved that bone scan wasn't worse even with increased PSA.

Always appreciate any insights or wisdom!

We're still waiting to get started on the Xtandi.  I forgot to ask the dr about the Lupron, I assume he will stay on it...any opinions on that?

VascodaGama said:

Sid,

I read your other thread but I prefer to give you my opinion in this your initial post where you shared details of your husband's case. Resuming; the PSA "started at 1550 and over 6 months of tx with Casodex and Lupron came down to 22.  then went up to 24, then 26 and yestready was 96".

In my opinion, the last increase certifies the refractory status. We have discussed the matter in above post. Your husband should stop the Casodex the soonest and look for a substitute such as Xtandi. Lupron should be taken continuously with the newer antiandrogen.

Best wishes,

VG

Thank you for responding, I didn't realize the refractory impact could cause such a significant increase.