Side effects years after Salvage external radiation.

VascodaGama said:

Pain from cancer is most felt at the joints

Jackdrum,

Welcome "back". I noticed that this is your first post of the board though you are a member since 2007.

The other "old" boy/survivor with many years on record, I know here, is Old-timer (Jerry) that is 90 years old and survived the same treatments as yours. He is fighting the bandit since 1991 so I think him being a longer survivor. (here is his summary; http://csn.cancer.org/comment/1474537#comment-1474537)

My lay opinion on your shared info is that cancer is behind your present symptoms. The radiation of 2005 could affect to some extent but tissues manage to recover the radiation blow. PCa likes to spread to bone and the pain is most felt at the joints. Hormonal treatments manage to alleviate (down grade cancer activity) at these affected areas providing some relief of pain. When pain becomes unbearable doctors apply spot radiation to those lesions with success.

You did not give details of the HT protocol but I assume that your previous hormonal shot's effectiveness is over by now (April'15 plus 9 months plus 3 plus 4), and such has led cancer to become freely active. My recommendation is that you take an antiandrogen (like Casodex) during two weeks before taking any shot (avoiding flare), If you decide to go back to HT.

 I wonder what have your doctor told you?

Can you share you PSA histology?

Best wishes,

Merry Christmas

VGama

 

I was diagnosed with PC in June,1990,  while having a
routine checkup by a Urologist while trying to find the cause of some other medical problems I was having.   I had biopsieswhich confirmed the PC.  
I scheduled and had the  RP on June 26, 1990.   My Gleason score in 1990 was listed as 2+3=5 with extensive perineural invasion.
Also listed as stage C, T3.
I was tracked by a oncologist for 10 years after surgery with
PSA still undetectable until the 12th year.  The 12th year my PSA test was 0.10.  After that my PSA gradually elevated until at the 15th year (2005) check it was 0.60.  
I checked back with my surgeon, who sent me back to my oncologist. At this time I was told I should have salvage radiation treatment.
I was set up to have 42 salvage radiation treatments on trilogy machine at OSF St. Francis Medical Center October 19, 2005 to December 13, 2005.   PSA dropped back again to 0.10 after treatment.  
I continued getting annual PSA checks,  and inNovember 8, 2011 my PSA again reached the 2.9 value .
I went to see my oncologist Wednesday November 15, 2011 and he wanted me to continue to wait and watch. I have also been advised that maybe I should be on a hormone therapy.
In June, 2015, I could feel things wrong in my body, so I got necular bone scan and CT scans done. This showed my PC was spreading and was in the prostate bed, one rib on the left side and in the bladder.
My PSA was checked and it was 10.33
My oncologist had me see a urologist and get a cystoscopy done.
On this cystoscopy the PC was found in the Urethra just as it left the bladder. He thought he got all the cancer, but I have had another cystco, and still having problems getting my bladder control back.
Next visit to oncologist, he put me on Lupron, and in 6 weeks my PSA has dropped to 4.42.
I will see oncologist again next month. Hopefully my PSA will be very low by then.
The Lupron has changed my lifestyle a lot, but if it stops the growth of the PC, it will be worth it.
On 9/24/2016 and I  I again had the CT and Necular Bone scans done.  The results looked "VERY GOOD, AND POSSIBLY SHOWING SOME IMPROVEMENT FROM THE SCANS I HAD 17 MONTHS AGO.
I have not been on any treatment since Dec. of last year, and my PSA did increase from 0.15 to 0.3 during this time.
My Oncologist said he would start the Lupron treatment again when the PSA reaches 0.6. I am grateful of the rest from the Lupron, but some of my side effects still remain.
My lab work prior to my last oncologist visit showed my PSA at 0.61  
Again saw my oncologist and he said that due to the results of my last bone scans he would not start my Lupron again until next visit on April 3 2017. 
I have put this together in a hurry this afternoon, and hope I haven't confused anyone.  
Many of the years I have had PC, I also ran a web site about Atrial Fibrillation  which I had been cured of by the MAZE PROCEDURE, and this was taking most of my time. 
I am no longer working on the Atrial Fibrillation site, and involved more in my PC. 
Hope this helps some.   I am open to any questions if you don't understand my rushed reporting on this. 
Thanks Jack

VascodaGama said:

Added tests may be helpful for the next consultation

Jack,

This is a long war against the bandit and it may have affected you much. You recall the events which surprises me. Your type of cancer Gleason (2+3) =6 wasn't/isn't aggressive and seems to respond well to the hormonal treatment. This is a great advantage on your side because you may have the means to control any aggressive advancement using the long list of HT drugs available today.

So far you have effectively used the traditional Lupron. This can be supplemented in a protocol involving other  more refined drugs that may be worth of trying together, or just wait till the first starts failing. HT treatment is palliative (do not provide cure but control) so that the therapy should be done timely with intrigue techniques, allowing long periods of control while, at the same time, avoiding refractory. HT/ADT is not a walk in the park and one needs to learn measures to counter the side effects. A change in life style, diet and courageous physical exercises are the best. Some HT drugs are prohibitive to patients with other illnesses, in particular to those with heart problems. A PCa specialist medical oncologist is the best to have as the follow-up physician so that interaction between drugs (for cancer and others) is avoided.

You need to have periodical tests to control: the cancer, the drug's effectiveness and its effects. Any case of anemia needs to be under constant vigilance and tackled the soonest. The PSA test and the Testosterone should be done together for comparing and verifying the beginning of refractory. Most probable you need to start taking sort of bisphosphanates to improve bone health or, even better, drugs that fight cancer in bone. While waiting for the next consultation you could get several tests for later being discussed with your doctor. You can do it by yourself at a local clinic. Definitively I would get a blood Testosterone test before the next Lupron. I also would get a DEXA scan (bone density test) and a ECG together with important lipids (ALT). 

I noticed that the PSA doubling during the "wait and watch" period (2011 to 2015) was of 24 months which verifies the low aggressivity of the cancer, but the extent of the spread verified by the scans of Jun 2015 makes me to assume that the cancer has been in those places from a time further before, probably earlier than the RT of 2005.

You did not say the date you took Lupron and its dose. This info is important to judge the benefits of this treatment. In any case the decrease in PSA is very significant of its effects against the cancer. I also wonder about the methodology practiced by your present oncologist. Is he administering HT intermittently? Why is he extending the period off drugs (no medication) for so long (till April 2017)?  

Can you tell us the missing dates when you started Lupron and the date of the last shot, as well as its dose?

How about any other drug given to you apart from Lupron?

What are the dates of your described PSA of 0.15 and 0.30?

Can you share the symptoms experienced when you say that "Lupron has changed my lifestyle a lot"?

What about other tests. Have you checked the lipids?

One aspect that I would recommend you to do is to discuss in your next visit about the possibility of radiating that affected "left rib". Cancer in the bladder and close to the sphincter (urethra) is difficult to treat with radiation because it may cause scars worsening the situation.

Best wishes for a New Year with many good results.

VGama

Thanks again V Gama

Sorry I have taken long to send this information back to you, but it has been busy Christmas week. 

I have also asked for a new Oncologist at Illinois Cancer Care.    Dr. Veeder does not specialize with PC.  I asked for a Cr. G MacVicar who has PC background.

http://illinoiscancercare-px.rtrk.com/doctors/gary-macvicar-m-d/