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Recurrent prostate CA after six years post surgery, radiation

grey ghost
Posts: 21
Joined: Jan 2012

Had a Greason score 3/4. in 2006 with seminal vesicle involvement. All PSA's were "negative" until 2012. My PSA was 0.34 in Jan '12, followed by 0.64 in July, now 3.6 or about a ten fold increasae in 12 months. I do not have any symptoms.

I imagine that I have an aggressive form. Currently wait and see recommended by oncologist. Any advice would be much appreciated

Grey Ghost

Samsungtech1
Posts: 350
Joined: Jan 2011

Not sure what procedure you had, but if it was RP then I would not wait.  Do not know what treatments you have had.  If you have been on HT and it is rising then you need to switch treatments.  What kind of Oncologist is he?  If he is a urologist get to a cancer Oncologist as quick as you can.  

Do not play with this.  Ask your Oncologist ,"if it was you what would you do?". 

You need someone who is better at treating this.  When it gets big wnough for him to see it, it will probably be too late to treat.  There are limits for treatments. I would be looking for someone else to treat me.

Good luck,

Mike

grey ghost
Posts: 21
Joined: Jan 2012

Thanks Mike very much for your response.

I had a RD by Da Vinchi followed by radiation. My oncologist at MGH will probably start me on some type of treatment (HT) when he sees me in March. He only treats patients with prostate cancer so I'm hoping he will have the right approach to this.

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

If HT does not work. Look at Zytiga it is on the market and you do not have to chemo first. I have been on a trial for a year and my psa is still under 1.0. I might make it another 6 months.Smile

grey ghost
Posts: 21
Joined: Jan 2012

Thank you Ralph for your experience with Zytiga. Due to my rapid rise in PSA, I have moved my appointment up to next week with my oncologist. I will post what he recommend.

Glad that you seem to be doing well. Keep it up!

Jim

muckdown
Posts: 27
Joined: Jul 2011

what are the side effects

 

grey ghost
Posts: 21
Joined: Jan 2012

My bone scan showed eartly metastasis in a few ribs so oncologist started me on a Lupron (three month shot). Does anyone have any experience starting out on Lupron?

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

Grey Ghost (Jim)

 

Welcome to the “Libido-less Wonder”. The world of castration.

You can find many past threads here dealing with Lupron (and the hormonal treatment or hormonal blockade). Taking Lupron is easy but the side effects of hypogonadism may put you down.

I have been on HT with Eligard shots (similar to Lupron) since November 2010. I have experienced numerous side effects being fatigue the most pronounced. My body accepted well the castration status and I managed to tackle the worse effects with a fitness physical program and diet.

Libido and pubic hair disappears and the loss of muscle mass makes us fell ten years older.

The nicest thing though is that it all returns to a normalcy once we stop taking the drug and the testosterone gets higher to the normal levels.

 

I wonder if your doctor has prescribed you an antiandrogen (such as Casodex) to be taken (two weeks) before the Lupron shot. I say that because agonists (like Lupron) cause a flare (of testosterone) initially and such may cause pain in patients with metastases at the bone.

There have been paralyzing cases in patients with spinal metastases because of compression of the spinal cord. That may not be your case, but as a precaution to have a dose of antiandrogens is proper.

 

The hormonal treatment principle is to block the testosterone from reaching the cancer. In the process many cells will die by starvation (PCa feeds on androgens like testosterone). To avoid the feeding, Lupron takes the lead by causing the testicles to stop the “production” of testosterone (hypogonadism). For extra blockade, HT protocols can include an antiandrogen to block the cancerous cells’ androgen receptors (AR) so that they do not absorb the testosterone (dying in the process). Still some doctors include in their HT protocol a third drug to block the production of dihydrotestosterone (DHT) which is a tenfold more powerful form of testosterone. These are 5-Alpha Reductase Inhibitors (5-ARI) such as Finasteride or Avodart.

Triple blockade is usually more effective in cases of PCa with bone metastases. In these cases a bisphosphonates like Zometa or Fosamax are also recommended to treat or avoid any bone loss.

 

Recently newer drugs have been reaching “the market” and they target the intratumoral effect of the cancer when it starts to produce its own androgens. Other target drugs avoid the cancer from resting at the places it most likes to spread (Xgeva helps to reconstruct the bone loss).

In your case with apparent bone metastases, a drug called Alpharadin may be proper. This is a newer “wonder drug” that kills PCa at bone with its radioactive substance. You may want to discuss with your doctor about any possibility of getting involved in a trial for this drug. Trials are safe and the best way to get “special” drugs that otherwise would not be available to the general folks.

Here is a link about the drug and the trial;

http://www.youtube.com/watch?v=NwPbMDktMWc

http://advancedprostatecancer.net/?cat=818

http://www.fiercebiotech.com/tags/alpharadin

 

I would recommend you to research the net about the side effects of hormonal treatment. You can also order from Amazon used copies of the fantastic very comprehensive book of Dr. Charles “Snuffy” Myers named;

“Beating Prostate Cancer: Hormonal Therapy & Diet” latest edition.

 

One important aspect of the hormonal manipulations is to monitor the drug’s effectiveness not only through tests of PSA but with periodical tests of testosterone and DHT (if on triple blockade).

Lipids and bone densitometry tests should also be included in the periodical monitoring.

 

Here is a link about diets for cancer;

http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1#Keypoint5

 

Best wishes for a successful “ride on Lupron” and the treatment.

 

VGama

grey ghost
Posts: 21
Joined: Jan 2012

Thanks for your very thoughtful and knowledgeable advice and counsel. So far I am on just Lupron (forever) and Casodex for 30 days. Starting to feel different, mostly more tired with, I'm sure, a bit of depression. Will have to shake out of it.

I was told to take Vitamin C and D suplements.

Jim

 

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

Jim

Vitamin D is important for bone "manufacturing". You will need more than a vitamin to tackle cancer in bone.

Lupron will try to control the advancement of the cancer but it will not kill it. You need to take medications for the bone metastases.

Alpharadin kills cancer in bone. That is a chance of cure this drug provides in oligometastatic cancer cases.

I would recommend you to discuss with your doctor regarding your bone health. The cancer weakens the bone and HT causes bone loss. Osteoperosis will affect you much if you do not start take a bisphosphanate like drug. Zometa is recommended in cases of bone metastases but it may cause osteonecrosis of the Jaw so that you should check for any dental "repair" at this time. Just get second opinions on the above from a specialized oncologist.

How about having a DEXA scan now at the begining of your HT treatment?

Best wishes for "full control" in your drive.

VG

 

grey ghost
Posts: 21
Joined: Jan 2012

Thanks VG.

I will look into alphradin and the DEXA scan- both of which I had not heard of so I am thankful for your input. I am now on Vitamin D and Calcium supplements.

Best regards,

Jim

JSA406
Posts: 4
Joined: Aug 2012

I outlined my experience before and got a lot of flack but I suggest you do some research on the university studies using Curcumin. It has been shown to prevent metastasis and inducee apoptosis. Read about it and you will at least make a more informed decision. It saved my life. It may help you.

grey ghost
Posts: 21
Joined: Jan 2012

Dear JSA,

I will carefully research your suggestion. Very thankful that you were greatly helped. Many thanks.

Jim

ob66
Posts: 215
Joined: Apr 2010

I was on lupron for over two years ending last January (2012). I had none of what VGama speaks of. I loved lupron. I had had daVinci surgery, a slight PSA increase 10 months after, then RT, and lupron in concert. I called it my "lupron vacation" for I knew for two years, if it worked (and it did), I did not have to worry about a rising PSA.....The ONLY side effect I had was hot flashes, probably 10-15 a day/night, that lasted about 5 minutes. That was it. Now for some, that would be the end of the world. For me, it was a small price for paying to put off any effects of cancer for the two years. It was literally a vacation, with the minor inconvenience of hot flashes/sweats......The best part is I have been off lupron for 13 months and my ultrasensitive PSA is still undetectable. Yes, lower than 0,02.......Contrary to what VGama has said, and he is for the most part a great source of info here, I love lupron. Not everyone is so lucky. But then add to that that I know lupron works in my body, and if I ever have any type of PSA increase, which I would guess, in the future, that I can again go on lupron......Not that bad from my viewpoint...

grey ghost
Posts: 21
Joined: Jan 2012

 

Dear ob66,

It is so good to know that Lupron has been so effective for you. I also will consider it a Lupron vacation and hope for the best. I very much appreciate your taking the time to comment. Continue to be well.

Best regards,

Jim

 

grey ghost
Posts: 21
Joined: Jan 2012

I have been on Lupron for 5 months now and have expereinced very few, if any, side effects. My wife calls me the energizing bunny! My PSA dropped from 5.6 to 0.24 which I believe is a good response to date. Due for another shot in July. So far I have not experienced any bone pain. Keeping the faith!

The best,

Jim

 

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

Jim

I am glad to know about the success. Lupron is working well and you managed to knockdown the bandit. Congratulations.

Regarding the symptoms (side effects) from hormonal treatments, they seem to occur differently in different patients and they are more acceptable by the ones that follow changes in their life routines (have dinner earlier, or have a nap during the day, etc) and physical fitness (weightlifting is good to maintain muscle). That may be behind the success of our buddy ob66 above.
In my case I accepted them well too, they were mild but numerous. Fatigue started at the 3-month mark and nocturia occurred about 3 to 5 times a night in the beginning. At the one year mark I felt loss of libido and my testicles become 1/3 of the original size. Hot flashes were very few and lasted in short periods. They never bordered me and I never took any medication to control the effects but I did change some daily routines. Now on vacations from the drug with the testosterone levels back to normalcy (out of castration), all those symptoms have disappeared. I can compare the difference between both statuses; under and out of castration.

Can you share with us details of your HT protocol and about any other aspect you did that was recommended by your doctor.

Are you on single blockade with Lupron alone or double with added Casodex?
What about the trend of the testosterone levels, what is the level of castration you are experiencing?
Have you checked for osteopenia/osteoporosis?

I believe that you will see still a drop in the PSA. You can achive better control of the treatment with periodical testosterone tests.
Any increase of the PSA in low testosterone "environment" (castration) would mean refractory. Keep an eye on the lipids and avoid anaemia.

Best wishes for continuing control and good life.

VG

 

grey ghost
Posts: 21
Joined: Jan 2012

Hi,

Hope all is going well with you, VG, and others. after a year on Lupron my PSA has started to rise (from .2 to 1.38).I do not have any symptoms. Guess new meds will be added. My oncologist told me not to bother with vitamin supplements such as vit. D and calcium???.

ozonetwo's picture
ozonetwo
Posts: 3
Joined: Apr 2014

Not sure how to post on this list... So I'm going to start with Here. I was diagnosed with PCa 1999, Baseline PSA 4.6, Surgery to remove prostate 7-15-99, Gleason 3+4=7. one year later salvage radiation. When my PSA started to slowly again eight years ago my oncologist that specializes in PCa started me on Finastaride twice a day and Flutimide twice a day. My PSA doubling time began to increase over the last six months

My last PSA Feb 1st was 2.35. I had a CT, Bone scan at that time. The bone scan show two small hot spots. One in the rib cage area and one in my pelvis area. My oncologist and I decided it was time to start Lupron monthly for nine months and then an off period. I ceased Finastride and Flutimide two days before my 1st Lupron injection Feb 1st. Went back for my second injection of Lupron and PSA last week. To my surprise my PSA had gone up to 3.52! Does that mean I'm hormone refactory? Could my raise in my PSA be due to my long term use of Finastride? Help! Thanks in advance.

Saludos,

Ken... AK: ozonetwo

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

Jim

The increase is very significant in such a short time and you need to stop the increase with all weaponry you can afford. You need to add other HT blockers, probably going on ADT3, to arrest back the PSA down to 0.05 levels.

I would recommend you to get a Testosterone test the soonest to check for castration status. Sometimes Lupron is administered erroneously causing it to lose its effects in the treatment. Casodex (and to a minimum extent Avodart) may be still effective in handling your case before you look for the second-line HT drugs, such as Zytiga, etc. Oncologists like Myers usually recommend patients to take a daily Casodex pill of 100 to 150mg in conditions as that of yours. You can verify its effect with a PSA test done at the one to two month mark, and then discontinuing it if failure is verified.  Frown
At such point you should then look for drugs involving intratumoral activities like Xtandi or Zytiga but these cause other side effects and are expensive and not covered by most insurers if taken before a chemo protocol (that is still more nasty).  Cry

Consult an oncologist specialist in targeted medication like Mark Scholz, Charles “Snuffy” Myers, Bob Leibowitz, etc. There are many reliable doctors with loads of experience in advanced cases but they should be the ones highly qualified that can pull you into a clinical trial. This is the way that you can avail of those “special” drugs like Xtandi (enzalutamide, MDV3100) Xofigo (formerly called Alpharadin), Zytiga, etc.

Read this link;
http://prostatecancerinfolink.net/tips-tools/finding-the-medical-oncologist-who-is-right-for-you-one-specialists-opinion/

Pain is associated with advanced bone metastases which is still not your case. However, the sudden spike is indicative of cancer activity and spread. You need to be vigilant with continuous lipids check up and XRs to the upper body (lungs, etc.). You can take your supplements if you trust them and if they do not interfere with the medications. D and calcium are controversial, some doctors recommend it and some don't, however, D is important and needed in the "work" of bisphosphanates. You can have it naturaly by going to sunbathing (where do you live, north?).

I believe you will manage to get your previous status if you handle things fast. Get tested and second opinions on the above.

I hope my insights are of help.

Best of lucks.

VGama  Wink

A note on myself, I am doing fine. The PSA took a slower path and the testosterone is still increasing, now at the 460 mark. Libido is back and I am very active (nostalgia). I just returned from a visit to my doctor in Tokyo which gave me back my confidence. Surely I am worried about any spread while on this vacation period off-drugs, but I am vigilant with constant checkups and will "take an action" as soon as I get a spike or when I reach the "trigger" PSA level of 2.5 ng/ml. Thanks for inquiring about me. Kiss

Trew
Posts: 891
Joined: Jan 2010

VG, glad you continue to share your knowledge with us. 

 

Your post reminds me again of the seriousness of PC. 

 

 

grey ghost
Posts: 21
Joined: Jan 2012

Hi Again my good man. Glad you are doing fine. Many thanks for your informed comments.

I will find out very soon what my oncologist (who treats only prostate cancer patients at a large Boston hospital) recommends following my PSA rise. Will let you know. Had another PSA drawn last week as well as a testosterone. PSA rose again to 2.3. Don't have the Testosterone level yet. I am, of course, very anxious to get moving on this. Casodex has not been mentioned yet nor any mention of a clinical trial. To be clear I have bone metastasis in several areas. I expect bone pain any day now.

Will certainly follow up with second opinions you noted.

Best to you and all. Keep up the good fight.

Jim

grey ghost
Posts: 21
Joined: Jan 2012

Hi All,

Now that I have HRPC after almost a year on Lupron, my oncologist will start me on Zytiga next week. My bone scan and CT shows disease progression- some new areas in the bones and some areas where the uptake has lessened.

Jim

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

Jim

I am sorry for the advanced status. Zytiga is not new or a pilot drug in treating PCa but it needs care because of its side effects. You need to read about the stories of guys like Ralph that are on Zytiga. Get constant checks on the lipids to avoid anemia. (http://www.medicinenet.com/anemia/article.htm)
Inquire about the timing when to take the drug in regards to your intake of food. Prednisone, which I believe will pair with your Zytiga, got its own side effects too. Typically one continues with the LHRH agonist.
I hope you manage things well and that cancer is killed by your continuing fight. You may need to find a proper diet to fit this newer “step” in the treatment.  Laughing

Here are links you may be interested in reading;
http://csn.cancer.org/node/236006
http://csn.cancer.org/node/258154
http://csn.cancer.org/node/240162
http://csn.cancer.org/node/243176
http://csn.cancer.org/node/238485

A link to Zytiga’s site;
http://www.zytiga.com/

 

Wishing you the best of lucks.

VGama  Wink

grey ghost
Posts: 21
Joined: Jan 2012

Thanks VGama for your always thoughtful and helpful replies.

In addition to Lupron, the Zytiga regimen plus Prednisone has knocked my PSA back to undetectable for now. I am what is termed a low PSA produces but my bone scan looks like a lighted Christmas tree. I am very thankful that, thus far, I have had only a slight back ache with one flair up just prior to going on Zytiga when my PSA started to rise rapidly, although only up to 2.3.

Can anyone share their experiences who are taking Zytiga?

Am due for a bone scan fairly soon.

Hope that you are continuing to fight this disease and are doing well.

Best wished to all.

Jim

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

Jim,

Not many in this forum report experiences on Zytiga. Ralph has been the best fella explaining us details. So far in his last e-mail to me of April of 2013 was for a low PSA of 0.6. He spoke about pain in the joins which he identifies as a side effect from Zytiga. I would sugest you to send him a CSN mail.

In this link Zytiga patients discuss their experiences;
https://www.whatnext.com/questions/anyone-taking-zytiga-to-treat-stage-iv-prostate-cancer

Best wishes for continuing good results with the treatment.

VGama  Wink

grey ghost
Posts: 21
Joined: Jan 2012

I will try to get in touch with Ralph. I have not experienced any pain in my joints as he has, but hopefully he is doing better. Now on to the latest link you sent.

Many thanks.

Jim

grey ghost
Posts: 21
Joined: Jan 2012

Hi all. hope that you are being treated successfully.

I have now been on Lupron for two years. PSA started to rise so oncologist added Zytiga which I have been taking for 8 months. The combination is keeping my PSA undetectable even though I have metastasis in several bone locations. My quality of life has beed better than expected with no pain thus far. Truly grateful. I know that this will not work forever and that chemo will be on the horizon, but so far so good.

Best Regards,

Jim

Beau2
Posts: 232
Joined: Sep 2010

Jim,

Congratulaton on the low PSAs! Here's hoping they continue for a long time.

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

Atta boy Jim. Sounds like you have the right attitude for the fight. I am on Lupron, plus was on oral Casodex for first 100 days.There are ups and downs, but there would be regardless of ones health. I don't worry about the downs, and enjoy the ups.

 

dr 

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