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Side effects years after Salvage external radiation.

jackdrum
Posts: 5
Joined: Dec 2007

Here is a short Bio of my PC history. 

I was Dxed with PC in 1990, had my RP June of 1990, next was salvage radiation in 2005. 

I went from then to April 2015 when my PC started spreading.   Necular boan scans show it had spread to Left Rib, Prostate Bed, and Bladder. 

I went on Lupron for 9 months, but have been off of it now.  

My biggest question now is could the 43 radiation treatments I had in 2005 be my hips to be giving me a lot of trouble now.   They are weak, and I am having problems getting up and down, or walking as I did a year ago.   Can the radiation 11 years ago just now be bothering my hips so much.  

I am now 83 but was in good shape until about a year and half ago.  

Also what is the longest PC survivor on record.   I will be 27 years come June 2017. 

Thanks so much for any answers. 

Jackdrum

VascodaGama's picture
VascodaGama
Posts: 3018
Joined: Nov 2010

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

 

jackdrum
Posts: 5
Joined: Dec 2007

Thanks VGama

Thanks for the reply and I will reply again later today with a more complete history.  

jackdrum
Posts: 5
Joined: Dec 2007

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's picture
VascodaGama
Posts: 3018
Joined: Nov 2010

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

jackdrum
Posts: 5
Joined: Dec 2007

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/

 
 
 
 
 
 
 
PSA READINGS, AND LUPRON SHOTS  ( TOTAL 3 SHOTS)
-----------------------------------------------------------------------------------------------------------
5/13/15 PSA, TOTAL (PROSTATIC SPECIFIC ANTIGEN) 10.33 ng/mL <4.00 ng/mL
6/22/15 Lupron Depot 22.5 mg INTRAMUSCULAR
----------------------------------------------------------------------------------------------------------
Recheck of PSA
7/24/15 PSA, TOTAL (PROSTATIC SPECIFIC ANTIGEN) 4.42 ng/mL <4.00 ng/mL
-------------------------------------------------------------------------------------------------------
9/14/15 PSA, TOTAL (PROSTATIC SPECIFIC ANTIGEN) 0.48 ng/mL <4.00 ng/mL
9/21/15 Lupron Depot 22.5 mg INTRAMUSCULAR
---------------------------------------------------------------------------------------------------------
12/7/15 PSA, TOTAL (PROSTATIC SPECIFIC ANTIGEN) 0.16 ng/mL <4.00 ng/mL
12/21/2015 Lupron Depot 22.5 mg INTRAMUSCULAR 12/21/2015
------------------------------------------------------------------------------------------------------------
3/6/16 PSA, TOTAL (PROSTATIC SPECIFIC ANTIGEN) 0.15 ng/mL <4.00 ng/mL
No Lupron shot
---------------------------------------------------------------------------------------------------------
 
9/6/16 PSA, TOTAL (PROSTATIC SPECIFIC ANTIGEN) 0.30 ng/mL <4.00 ng/mL
No Lupron shot
------------------------------------------------------------------------------------------------------------
12/12/16 PSA, TOTAL (PROSTATIC SPECIFIC ANTIGEN) 0.61 ng/mL <4.00 ng/mL
No Lupron shot
I've asked for a new Dr.
 
Lupron Depot 22.5 mg INTRAMUSCULAR 12/21/2015
 Lupron Depot 22.5 mg INTRAMUSCULAR 09/21/2015
Lupron Depot 22.5 mg INTRAMUSCULAR 06/22/2015
Hope to hear in the coming week if I get appointment with Dr. MacVicar
Thanks for your help.
Jack
VascodaGama's picture
VascodaGama
Posts: 3018
Joined: Nov 2010

Jack,

The above data confirms my previous thoughts. Lupron got a grip on the cancer and stopped its activity while your body was under its effects. The PSA drop from 10.33 ng/ml, the level before the first Lupron shot of Jul 2015, to 0.15 ng/ml in Mar 2016, which coincides with the end of effectiveness of the last Lupron shot (Dec 2015 plus 3 months). I believe that the PSA has dropped still lower than 0.15 within the period of the blank six months (Mar to Sep 2016), while the effect of the Lupron was still present (approximately 4 months). From there on it started to increase most surely accompanying the increase of the Testosterone. Unfortunately you have not check the testosterone to verify its variations. In any case, I can see that your cancer is hormone dependent and that you can expect a practical control via HT manipulations. This is a BIG plus for a systemic patient.

My above recommendations are all valid. Get the above tests before the next consultation and before starting again the shots. I think you can expect many years of control via hormonal drugs. Lupron is an LHRH agonist that makes the testis to stop producing testosterone (chemical castration). Without testosterone circulating in the body, the cancer goes indolent and the patient experiences menopause symptoms (hypogonadism). PCa feeds on the androgen but it does not die of starvation because there are other androgens in circulation (5%) produced by the adrenal glands. If the Lupron becomes ineffective one needs to add other means of blockades to avoid the bandit from feeding. Casodex (an antiandrogen) manages to stop the feeding closing the androgen receptors (AR) of the cancer (its mouth). These drugs can be taken together and are common in hormonal treatments. When these fail (refractory) then oncologists substitute them with more refined drugs such as Zytiga and Xtandi. These manipulations can be done intermittently providing periods of relief from the drugs side effects. There are guys that go through these manipulations over 15 years or dying from other causes.
I am a systemic patient on androgen deprivation therapy since 2010. I also used mono therapy with Eligard shots (same as Lupron) on intermittent administration. The norm is: one year on drugs in remission (PSA< 0.05) followed by a period off drugs till the PSA increases up to PSA= 2.0 ng/ml. At this level I start again the on drugs affair. Our cases have some similarities as I am a Gleason (2+3) 6 and had failed surgery and SRT. I was diagnosed in 2000.

I do not know the background of Dr. MacVicar but in his CV it says him to be involved in clinical trials. This is a good doctor if you ever want to participate in a trial. For the time being I think you should just continue the traditional HT, trying to manage the symptoms. The only negative aspect I find in your status, described above, is the metastasis in the rib-bone. HT will not eliminate it so that you should try other means to handle that spot. You also can get a PET scan to verify if cancer exist in other areas.

Best wishes for the New Year,

VGama

Will Doran
Posts: 207
Joined: Sep 2015

Jackdrum,

Congratulations on your long survival.  That's great.

I was diagonosed in October of 2013 at age of 67..  PSA 69, Gleason 7.  Had robotic surgery, on December '13.  Followed by 8 weeks of radiation and two full years of Lupron.  I had one lymph node involved on the right groin area.  The spot was so small that it didn't show up in my MRI's. I also have arthritis.  My right hip has been giving me trouble (joint pain and weakness).  I was just at my Chemo Oncology check up two days ago and they say the hip pain is from the radiation.  The radiation was stronger at the right hip area, because of the location of that lymph node with the spot that showed up in my pathology.  So, I understand.  This pain has gotten worse now that I am off the Lupron and my testosterone is back up in the normal range.  They tell me the hip pain is not from the PCa.  I am also on Prolia to help repair bone density damage caused by the radiation.  Prolia will also cause joint pain and muscle weakness, according to my Chemo Oncologist.. 

Love, Peace and God Bless

Will

jackdrum
Posts: 5
Joined: Dec 2007

Thanks Will for your information.  

I'm in the process of getting set up with a different Oncologist and will probably not do anything more until I am set up with him. 

Happy New Year to all you you.   Praying that 2017 is a good year for us all.  

Jack

Old Salt
Posts: 720
Joined: Aug 2014

The original question was:

My biggest question now is could the 43 radiation treatments I had in 2005 be my hips to be giving me a lot of trouble now.   They are weak, and I am having problems getting up and down, or walking as I did a year ago.   Can the radiation 11 years ago just now be bothering my hips so much.

My answer is no. More importantly, it doesn't really matter. What needs to be addressed is the pain in your hips. Based on your rising PSA, Vasco and others suggest that your cancer has returned. I also agree that hormone therapy could be used to fight this. The problems with your hips could well be caused by the cancer, but can be addressed. As Vasco already suggested, a DEXA scan would be informative. Moreover, various ways of strengthening your hips are available. HOWEVER, other underlying causes for the problems with your hips should be considered as well. A complete 'physical' with emphasis on the hip problems seems warranted.

Independent of the above, I suggest you start bone strengthening exercises.

 

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