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Update: cancer has spread despite successful Cyberknife
Ron Pavluvcik
Posted: Tuesday, December 04, 2012 9:59 PM
Joined: 10/10/2008
Posts: 79


Hello again: I had CK treatment in 2008. (I have posted here before on my insurance problems and rising PSA after CK). PSA dropped down below 1 within a year, then increased to 15. Bone scan negative, biopsy on my zapped prostate was negative, so doc said the cancer was still in my bloodstream/body in very small amounts. He started me on the standard hormone treatment Lupron injections, and for 2 years PSA lowered to below 1. Then started rising again recently to 2. Doc is continuing hormone injections but also added Casodex pills which are supposed to reduce testostrogen as does the Lupron. Doc says several other pills are available if PSA starts rising rapidly. Then people try chemo. Doc says most people in my situation have a life expectancy of 5-10 years. Of course there are exceptions, some less than 5, some more than 10. In general I'm OK with all this - the Cyberknife worked, but the cancer had already spread. Minimal side effects from the hormone treatment. I'm 65 years old now, I've already had a full and rewarding life, and another 5-10 years is still plenty of time to attack remaining items on my bucket list...Ron Pavluvcik, Shelton, CT
Allen_E.
Posted: Wednesday, December 05, 2012 12:28 AM
Joined: 8/8/2010
Posts: 666


Ron, I'm so sorry to hear that. To have one's hopes up and then to be slammed like that just plain sucks. And it can happen to any of us. I have several friends in your situation. IMHO, using some of those other drugs earlier in the process makes a lot of sense. I have been working very closely with one friend and his oncologist who has added Zytiga to his Lupron, Casodex and Avodart, and it brought his PSA right down. If that stops working he will use Xtandi. He also takes Zometa to prevent bone mets and help maintain his bone mineral density while he's on hormone therapy. He wants to try Taxotere sooner rather than later in a cocktail with his hormone therapy and perhaps a few other ingredients. Jevtana seems to work much better, but he has to try at least one round of Taxotere first so his insurance will pay for it. He also wants to try Provenge now while the immune boost can do him more good. His oncologist is pushing for it with his insurance company. The hot new drug is called Cometriq. It was FDA approved last week for medullary thyroid cancer and is doing gang-busters so far in clinical trials for prostate cancer. I mention all this to give you a sense of the pace at which new PC drugs are hitting the market. There are dozens of new drugs in the pipeline that have shown great promise in clinical trials, some that work synergistically with other drugs, and some that may be more effective if used earlier. I hope some of them will work for you.

- Allen (not an MD)
JAV
Posted: Wednesday, December 05, 2012 5:05 AM
Joined: 10/29/2010
Posts: 736


Ron: So sorry to hear about your current situation. I wish you and your Doc.'s all the best for your future treatment. You sound like one heck of a guy with a great attitude about all of this. Just curious, what type of Doc. is now handling your case ?? A medical oncologist ?? Take care. FYI, Here is a link about guy that has survived many years while being treated with drugs that you might find interesting : http://www.yananow.org/display_story.php?id=984 JAV
Ron Pavluvcik
Posted: Thursday, December 06, 2012 7:50 AM
Joined: 10/10/2008
Posts: 79


JAV asked above about the docs I'm using. My Cyberknife doc was not a urologist, but used the Cyberknife on many types of tumors. When my PSA jumped after the Cyberknife treatment, I picked a new urologist who is highly rated and regarded, although with no Cyberknife experience. The new doc did a biopsy to confirm the cancer was gone in prostate, and I had a negative bone scan, and then he started me on the hormone Lupron, and most recently the new pill Casodex to try and lower the testostrogen and thus the PSA, and suppress the spread and growth of the cancer in my bloodstream. I also started taking a strong calcium supplement. He has mentioned the future treatment options, pretty much as JAV has listed above. Pretty much a hit or miss proposition to find out what may work. I decided to see a Medical Oncologist for a second opinion, and picked a good one, who confirmed everything I heard from the urologist. I'm staying with the urologist for now to continue with the Lupron and Casodex drugs, while keeping the Oncologist informed of my progress. I guess at some point I will stop with the urologist and depend on the oncologist to prescribe among all the drugs out there, and any new ones...I have the book by Dr. Myers on using hormones. Ron Pavluvcik, Shelton, CT
ChicoXXX
Posted: Thursday, December 06, 2012 11:05 AM
Joined: 10/10/2008
Posts: 431


Ron,

I also am so sorry to hear about the spread into the blood stream. I guess that we all continue to monitor our own progress , as well as that of folks that have been going through the jouneys together (e.g. identification of the condition, finding possible options, negotiating/fighting with insurance companies etc.). It is so sad to hear of situations as you. I only hope that some of drs find solutions to reverse your condition.

My wife and I will keep you in our prayers, as we do for all of those who have shared or will share these journeys with PCa.

 

 

 

 


Allen_E.
Posted: Thursday, December 06, 2012 11:25 AM
Joined: 8/8/2010
Posts: 666


Hi Ron, I'm glad you're consulting with an oncologist. Be careful with Dr Snuffy Myers' book - although I think the world of him -- his book is woefully out of date and needs revision. I think he himself would agree. Knowledge has changed so fast.
- Allen (not an MD)
Ron Pavluvcik
Posted: Friday, December 07, 2012 6:28 AM
Joined: 10/10/2008
Posts: 79


Thanks, guys - and it was ALLEN that listed all the current drugs for treating advanced prostate cancer, that I will probably be migrating to over time...I'll keep you posted...Ron Pavluvcik
viperfred
Posted: Friday, December 07, 2012 1:47 PM
Joined: 10/10/2008
Posts: 836


Hi Ron, Sorry PCa is still with you. Take a look at this report on Cabozantinib http://jco.ascopubs.org/content/early/2012/11/16/JCO.2012.45.0494.abstract You have more than 10 years to stay with us. Best, Fred
JAV
Posted: Friday, December 07, 2012 2:32 PM
Joined: 10/29/2010
Posts: 736


Ron: Please keep us posted, Buddy. JAV
Ron Pavluvcik
Posted: Saturday, March 16, 2013 2:30 PM
Joined: 10/10/2008
Posts: 79


Well, it's 3 months after my last post here and my problems continue. See prior posts above for background info. When we left off, my doc had just started me on the Casodex pill to reduce my PSA, taken along with the Lupron hormone. Unfortunately, my PSA continues to increase, now up to 2.35 after hitting a low way below 1, some 2 years ago after Cyberknife treatment. My doc could not believe the recent increase while taking the Casodex, so he ordered another PSA test last week, but it came back high again over 2. I see him in office in a month - I suspect he will follow the standard treatment plan of trying another hormone drug to lower the PSA and testosterone and thus the risk/growth of the cancer cells still in my system. Waiting out there at the end of the game is Provenge, which will add about 4 months to my life, if I can save up $93,000 for a years supply...Ron Pavluvcik, Shelton, CT
alan katz md
Posted: Sunday, March 17, 2013 1:59 PM
Joined: 10/10/2008
Posts: 562


Ron You probably need to start on Leupron. THis may supress your cancer for many years.

Alan J Katz MD JD

Flushing Radiation Oncology

40-22 Main St  Flushing NY

akatzmd@msn.com

 


Ron Pavluvcik
Posted: Thursday, April 18, 2013 5:58 PM
Joined: 10/10/2008
Posts: 79


More problems. If you recall, I have been on the Lupron hormone treatment for several years, and then the Casodex pill, because my PSA was rising again, from below 1 to above 2. And in recent weeks it has reached 2.5. Saw my Urologist yesterday, who said that obviously the Casodex isn't working. So he told me to stop taking it, and he gave me another quarterly Lupron injection. I asked, what's next - try another pill, like Zytiga, that might lower my PSA again? He said, if I wanted, or I could try to get approval for the high power Provenge pill, which people are using as a last resort to prolong life, but it only extends it an average of 4 months. Apparently most insurance plans want you to try everything else including chemotherapy before getting an approval for Provenge, because it is a very expensive drug. So the Urologist suggested I check with an Oncologist I just started to see, who might be able to get me approval for Provenge even though I haven't tried the other 4-5 other drugs out there. Will see the Oncologist in 2 weeks...Looks like they were right when they told me I may have only 5-10 years to live...... got to keep working on that "bucket list" ....Ron Pavluvcik, Shelton, CT
radsrus
Posted: Thursday, April 18, 2013 6:02 PM
Joined: 10/10/2008
Posts: 4386


If you are not having symptoms, another option is to stop hormonal treatments and see what happens. Some people respond to withdrawing hormonal agents. All of us come with an expiration date. I think we should have the bucket list hung on or cribs. Sure trying to get mine done just in case.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Allen_E.
Posted: Friday, April 19, 2013 10:36 AM
Joined: 8/8/2010
Posts: 666


Ron, I'm glad you are seeing an oncologist. There are a lot of new drugs, and much to be learned about their optimal timing and sequencing. Dr. Scholz, who I've met, is running a clinical trial of simultaneously treating with both Provenge and Yervoy. Provenge amps up the innate immune system to seek and destroy the cancer. Yervoy prevents your adaptive immune system from accepting the cancer as "self." Together, they may work synergistically. Here's a link: http://www.clinicaltrials.gov/ct2/show/NCT01832870 There are also many other immune therapies in clinical trials right now. Prostvac VF looks especially promising. So does a new class of something called anti-PD-1 or anti-PD-L1 antibodies. Immune therapy cocktails may be the way to go. However, while potentially effective, these kinds of meds are dangerous - runaway immune response can be fatal. Here's a clinical trial of a combination of 3: http://clinicaltrials.gov/ct2/show/NCT01420965 A lot of clinical trials are only for men who have been identified with bone mets already. To that end, you might want to try some of the better imaging techniques that can find much smaller mets than a normal technetium bone scan can. NaF18 PET scans have become more widely available in the past couple of years, and they are covered by Medicare and many insurance companies. There are other PET scans that may be able to detect even smaller mets, but they probably won't be covered and only a few places in the US do them. They include C11-Acetate, C-11 Choline, F18-Choline & F18-FACBC. You have to be careful about you interpret the findings of clinical trials. For example, while it's true that Provenge added a median of 4 months, there were some men who did not respond at all, and some who got additional years off of it. There seemed to be better response with earlier treatment. It's up to you how aggressive you want to be about all this. I hope your oncologist will present you with options.

- Allen (not an MD)
Ron Pavluvcik
Posted: Saturday, May 04, 2013 4:38 AM
Joined: 10/10/2008
Posts: 79


Now we have another strategy. As I mentioned here several weeks ago, my Urologist told me to stop taking the Casodex pill, because with it my PSA was slowly rising, but he said to keep getting the Lupron injection from him. He agreed with me it was time to see the Oncologist again. So I saw the Oncologist again this week, and he said that actually, my PSA hadn't risen that much in the past year while taking the Casodex (which was supposed to lower it), and so he wants me to stay on Casodex for now. he turned down my idea of going straight to the new, powerful, but expensive Provenge pill, as being too soon. Plus he says insurance companies want patients to keep trying the other pill options first (to lower PSA/cancer). So that's the new game plan. While my PSA has been rising from les that 1 to 2.5, the Oncologist doesn't consider that significant, yet....also: I keep seeing commercials on TV here in Connecticut for Provenge..Ron Pavluvcik, Shelton, CT
radsrus
Posted: Saturday, May 04, 2013 5:07 AM
Joined: 10/10/2008
Posts: 4386


I have never used Provenge, and am definitely not an expert on it, but my impression is that it has generally been used later. Not sure that makes sense, since it is more likely to be effective in my mind if used when there is less cancer.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


JAV
Posted: Saturday, May 04, 2013 5:19 AM
Joined: 10/29/2010
Posts: 736


Ron: We are being bombarded by Provenge commercials on TV here in Michigan, also. I understand it is an extrememly expensive drug, with little additional benefit. But I suppose it gives the patient an additional measure of hope. Which is fine, if the patient can afford it, IMHO. http://www.nejm.org/doi/full/10.1056/NEJMp1103057 It's good to hear the oncologist feels that your PSA hasn't risen all that much. On a different forum, I have heard of guys who PSA's were in the 100's , so 2.5 doesn't sound all that high, in comparison ...... Are you having other symptoms besides a rising PSA ? Good Luck on working on that bucket list. I have a few items to work on this year now that the weather has warmed up here. I have several long distance endurance motorcycle rides planned after I have a biopsy of my paratracheal lymph node. A CTScan a few months ago when I developed blood clots in my lungs found that. A bunch of scary sounding blood tests don't indicate lymphoma and my other nodes in my abdomen and pelvis are clear, so this is a mystery so far to the Dr.'s . Saw a pulmonologist yesterday to have the biopsy scheduled. I passed the pulmonary function test, just fine. Again, Take Care and please keep us posted. JAV

Treated with CK 4-2011 Gleason of 3+4 , PSA 3.7 PSA at 1-13 , 0.4
Ron Pavluvcik
Posted: Sunday, July 21, 2013 8:01 AM
Joined: 10/10/2008
Posts: 79


Well, I'm still on the Casodex pills,along with the Lupron hormone drug, as my new Oncologist recommended, and the latest PSA from last week shows only a small increase in the past few months to 2.68 so I will continue to stay on that for a while, as I keep the Provenge option on the back burner. Have been reading more about Provenge, and now I understand how it works - a doc takes a blood sample, sends it to the company that makes the Provenge, and they mix my blood with the right variety of Provenge, and send it back to my doc who adds the blood back into me (infusion). This has to be done 3 times, within a 30 day period, and that's it. Then the mixture supposedly attacks my particular strain of the prostate cancer. Total ttreatment cost is $93,000 list. Medicare and most insurances now cover it. Just watch the co-pay. Overall, this drug increases life expectancy by about 4 months, some people much longer - so it's a last resort medication that up to now has been prescribed for AFTER you get chemo, but more and more docs are prescribing the Provenge BEFORE chemo since it works pretty well compared to everything else. So I have cut back on my part time jobs a bit, trying to enjoy family and friends more frequently along with hobbies, and staying positive about things. When I get depressed about my health and likely life expectancy (5-10 years I've been told) I think about those 20 seven year old kids in Newtown, CT (some 15 miles from where I live in Shelton) and that cures my depression and self-pity.
viperfred
Posted: Sunday, July 28, 2013 8:20 AM
Joined: 10/10/2008
Posts: 836


Hi Ron, William Dahut MD at the NIH has an update on prostate cancer. He is a very nice guy, met him DC in 2009 on a trip to visit our political leaders regarding our right to be treated with the CK. Give him a call or have your Dr. call him. Wish you much luck my friend. http://ccr.cancer.gov/staff/staff.asp?profileid=5639 Chair, Medical Executive Committee Clinical Director National Cancer Institute (301) 496-4251 dahutw@mail.nih.gov
JAV
Posted: Sunday, July 28, 2013 12:18 PM
Joined: 10/29/2010
Posts: 736


Ron : Thanks for the update. I hope you can keep your spirits up and are able to have some joy in your life. Turns out the mass in my chest is a cyst. Probably had it since I was in the womb. Take care, JAV

Treated with CK 4-2011 Gleason of 3+4 , PSA 3.7 PSA at 7-13 , 0.3
Ron Pavluvcik
Posted: Monday, August 12, 2013 4:18 PM
Joined: 10/10/2008
Posts: 79


Fred:

Thanks for the referral to Dr. Dahut. I contacted his office with the info you provided, and am looking into his clinical trial program at NIH in Maryland.  Like anything else there are some pro's and con's to consider.....it's a bit difficult for me to travel very much these days due to other responsibilities and issues. Still considering all my options...Ron Pavluvcik, Shelton, CT


viperfred
Posted: Thursday, August 15, 2013 11:16 PM
Joined: 10/10/2008
Posts: 836


Hi Ron, Best wishes with the path that works best for you. FYI, Dr. Dahut is very nice. FredK
gardenz
Posted: Friday, August 16, 2013 3:26 PM
Joined: 8/5/2013
Posts: 15


Ronald, said a prayer for you. And that the doctors will be imparted wisdom in finding an effective combination of treatment. Thanks for sharing your story. Hang in there.
Ron Pavluvcik
Posted: Saturday, February 01, 2014 9:40 AM
Joined: 10/10/2008
Posts: 79


Hi - it's Ron Pavluvcik from Shelton, CT back again with an update.

If you recall, or else go back and read earlier posts, I had successful treatment with Cyberknife in 2008. My PSA dropped for a couple of years, but then it started rising again. A biopsy revealed no cancer in prostate, but it was in my bloodstream. Urologist started me on Lupron hormone for 2 years, which reduced PSA below 1, but then started rising again. So we added the Casodex pill, but that didn't work out very well and PSA kept rising. Last week, it had doubled in one month to 15. So after switching to an Oncologist within past year, and thinking about trying PROVENGE which is an immunitherapy treatment involving adding some magic drug to your bloodstream, we have decided to go with XTANDI which just completed a successful clinical trial in which it reduced the PSA for most men and delayed the need to go to chemotherapy. Docs and analysts now say that XTANDI is better than Zytiga at this point after hormone therapy fails, because test results are better with XTANDI and you don't need to take a second drug with it - like Zytiga requires the accompanying Prendisone steroid.

Up to recently, XTANDI was being prescribed after trying chemo, but now it will shortly be approved for use like in my case, before chemo.

For more info, google XTANDI. Retail list price is about $6,000 a month, but I'm waiting to find out what Aetna will charge me thru my medicare coverage (current age is 66). Wish me luck!

Long range plan, if the XTANDI doesn't do much in next 1-2 years, is to consider standard chemo or Provenge, or whatever else comes down the pipeline in future months as a new treatment. So I think I have at least another 3-4 years to live...that's a bit reassuring these days...

Bye

Ron



JAV
Posted: Saturday, February 01, 2014 11:29 AM
Joined: 10/29/2010
Posts: 736


Ron :

Sorry to hear you latest update.
It does sound like you are handling it as well as can be expected.  I'll be praying for you and your Docs.

Take care,

JAV



Treated with CK 4-2011 Gleason of 3+4 , PSA 3.7
 PSA at 7-13 , 0.3
 PSA at 11-13 , 0.3

ChicoXXX
Posted: Saturday, February 01, 2014 2:55 PM
Joined: 10/10/2008
Posts: 431


Ron, I also am sorry to hear the progress report and hope and pray that the XTANDI gets you back on a better trend. I really do pray for all of us who continue to monitor or status ever year and especially for those who are not progressing as well as we might hope. I hope you will continue to keep us posted on your progess. chico
alan katz md
Posted: Sunday, February 02, 2014 4:19 PM
Joined: 10/10/2008
Posts: 562


I echo everyone's sentiments in wishing you a great result from your new drug regimen

Alan J Katz MD JD

Flushing Radiation Oncology

40-22 Main St  Flushing NY

akatzmd@msn.com

 


Allen_E.
Posted: Monday, February 03, 2014 9:38 AM
Joined: 8/8/2010
Posts: 666


Ron, I'm sorry you have to take these drugs, but Xtandi is one of the best. Both Provenge and Taxotere seem to work better when started earlier in the process, according to the latest studies. I think there is a lot of merit to the cocktail approach as opposed to the stair-step sequencing approach, but I know this is controversial. There are several very promising clinical trials that you may be eligible for -- something to discuss with your oncologist. - Allen
- Allen (not an MD)
viperfred
Posted: Monday, February 03, 2014 7:55 PM
Joined: 10/10/2008
Posts: 836


Hi Ron, Sorry to hear your PSA is increasing. Wish you the very best possible outcome with XTAND for PCa management. I appreciate you sharing your progress and hope your next update is good news Best, FredK CK Treatment for PCa 5/2008
Ron Pavluvcik
Posted: Monday, April 21, 2014 4:30 PM
Joined: 10/10/2008
Posts: 79


Hi - back again... Been on XTANDI for almost 3 months - 4 big pills taken at one time every day...my doc the Oncologist says to wait a little longer before checking PSA to give time for the XTANDI to kick in... But, in the meantime, I have a question for the docs and other informed people on this site: the fact that my PSA has risen to almost 20 after initially declining to almost zero following my Cyberknife treatment back in August 2008 (see my previous posts): does that mean that Cyberknife did not work after all? That, for whatever reason, all the cancer in my prostate was not killed after all? Not to blame anyone, such as my Cyberknife doc or the people who programed the machine - I just want to know if my case would count as a Cyberknife success story or not... Looking forward to all replies... Ron Pavluvcik Shelton, CT
radsrus
Posted: Monday, April 21, 2014 4:50 PM
Joined: 10/10/2008
Posts: 4386


If you are not cured then it is not a success story, but it is unclear to me whether you have local recurrence (CyberKnife failed to control the disease there) or metastatic disease (CyberKnife worked locally but the horse was already out of the barn) or both.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Allen_E.
Posted: Tuesday, April 22, 2014 12:27 PM
Joined: 8/8/2010
Posts: 666


Ron, Because you said the biopsy of your irradiated prostate came out negative, it wasn't likely a local recurrence. But a biopsy is just a random sampling that may have missed some cancer, especially in the anterior zone, which is not reached by TRUS-guided biopsy.

- Allen (not an MD)
Ron Pavluvcik
Posted: Saturday, August 16, 2014 9:16 AM
Joined: 10/10/2008
Posts: 79


Hi Guys, So far this XTANDI medication I'm taking is working great. I have been on it for 6 months now, and my PSA has dropped from 15 in February 2014 to 1.6 in August 2014. As I have posted previously here, up to now XTANDI was approved and used AFTER chemo - which basically means as the last step before you kick the bucket. But now, some doctors like mine are being allowed to prescribe it for patients like me, BEFORE chemo, after the Lupron hormone and Casodex have stopped working. It is expected that XTANDI will be officially approved for pre-chemo usage in mid-September. It is better than Zytiga because the Zytiga has to be taken with Predizone steroid. Only problem with XTANDI, in addition to the fatigue it causes, is that the efficacy might only last 1-2 years. and then it stops being helpful at lowering PSA. Then you are back to chemo option again, or Provenge. Or maybe another miracle drug will come out. But I definetly recommend the XTANDI option to all like me. The manufacturer of XTANDI, called Medivation, has had their stock rise rapidly in recent weeks because the word is getting out that XTANDI really works! Good luck to all...Ron - Connecticut
Allen_E.
Posted: Saturday, August 16, 2014 12:24 PM
Joined: 8/8/2010
Posts: 666


The latest learning is that Taxotere is way more effective if used earlier when there are mets and the cancer is still hormone sensitive. Provenge may work better if used earlier as well. Combos may turn out to be the best way to go. Tell your oncologist if you are interested in participating in a clinical trial - they don't always suggest it on their own. There are lots of really promising ones out there.

- Allen (not an MD)
JAV
Posted: Saturday, August 16, 2014 5:05 PM
Joined: 10/29/2010
Posts: 736


Ron :

Thanks for checking in with the great news.  My thoughts and prayers will be with you.

JAV


Treated with CK 4-2011.  Gleason of 3+4 , PSA 3.7
 PSA on 7-13 , 0.3
 PSA on 11-13 , 0.3
 PSA on 5-14 ,  0.3
 PSA on 7-14 ,  0.2

Comeback Kid II
Posted: Saturday, August 16, 2014 7:34 PM
Joined: 7/10/2014
Posts: 42


Great news that Xtandi is working well for you. I have a good friend that has been on Zytiga, and he is getting along very well too. Its great that we are getting more options available all the time.

Comeback Kid II
viperfred
Posted: Wednesday, September 03, 2014 7:53 PM
Joined: 10/10/2008
Posts: 836


Hi Ron, I am glad you are doing well! You made my day, continued good news. Best, FredK
ChicoXXX
Posted: Thursday, September 04, 2014 8:06 AM
Joined: 10/10/2008
Posts: 431


Ron, I share Fred's comments. I missed your original post. Hope for continued success. Chico
Ron Pavluvcik
Posted: Wednesday, September 24, 2014 4:40 AM
Joined: 10/10/2008
Posts: 79


Hi again, As I discussed a month ago here, XTANDI has now been approved as of mid-September 2014 for use BEFORE chemo, as well as after chemo. My last PSA was down to 1.6 after taking it for about 6 months ago, and I am quite impressed and grateful it's out there. The manufacturer of XTANDI is Medivation, and their stock has risen from about 70 to 100 in the past month, as it is expected that XTANDI will be prescribed by docs more so than Zytiga. The medical/generic name for the drug is Enzalutimide. Google for more info. Ron P, Connecticut.
JAV
Posted: Wednesday, September 24, 2014 4:48 AM
Joined: 10/29/2010
Posts: 736


Ron:

Thanks for keeping us informed and it's great to hear you are doing well !

Take care, and I pray for your continuing good results on the new drug.

JAV


Treated with CK 4-2011.  Gleason of 3+4 , PSA 3.7
 PSA on 7-13 , 0.3
 PSA on 11-13 , 0.3
 PSA on 5-14 ,  0.3
 PSA on 7-14 ,  0.2

Ron Pavluvcik
Posted: Monday, November 10, 2014 6:30 AM
Joined: 10/10/2008
Posts: 79


Hi again, This Xtandi drug I'm taking, since February, has now lowered my PSA to 1.09. I recommend it to all in my situation - see previous posts. Ron Pavluvcik, Shelton, CT
ChicoXXX
Posted: Wednesday, November 12, 2014 4:30 PM
Joined: 10/10/2008
Posts: 431


Ron, Thanks for update. Wishing/praying for your continued progress. Chico
Ron Pavluvcik
Posted: Wednesday, June 17, 2015 2:41 AM
Joined: 10/10/2008
Posts: 79


Hello again - for newbies, I'm the guy who had successful Cyberknife in 2008 but some prostate cancer cells have remained in my bloodstream causing PSA to rise up close to 20, and then drop a bit with the Lupron hormone, but rise again in 2013, until my Oncologist was ready to recommend chemo - instead, he got me onto the newly approved XTANDI pills in February 2014. The XTANDI along with the Lupron which I'm still on, has reduced the formation of more cancer cells such that here in June 2015 my PSA is now down to 0.30 - a very reassuring number. Additional body scans this year looking for developing tumors have been negative. So things are stable for now, and my prognosis is good for at least a couple of more years of normal life, after which it's possible the XTANDI might stop working, as have several other drugs in the past. See previous posts. I continue to post here to inform others than in a rare (1-5% ?) number of cases where, after Cyberknife there is recurring cancer, as evidenced by the returning high PSA again of 1-20 or more, there is still hope for many more good years from taking new pills and injections (Lupron). The XTANDI seems to be the most effective as well as most expensive, so it is usually not prescribed until other pills like Casodex have become ineffective. Meanwhile I read that other meds are in the development pipeline, which might keep me going for another 5-10 years. Time will tell - we must be patient and enjoy the present. Got to go now - my pepperoni pizza just got delivered. Ron Pavluvcik, Shelton, CT 203-767-1123
JAV
Posted: Wednesday, June 17, 2015 3:46 AM
Joined: 10/29/2010
Posts: 736


Ron, Thanks for the update of the good news !! And it's wonderful to hear that it sounds like you are in good spirits, too. I think I need to say to guys that are contemplating Cyberknife that you may have had this post treatment problem even if you had chosen RP, instead of CK , since the CaP cells may have been already outside your prostate at the time of treatment. ( See Dr. Medberry's post above for all the possibilities. ) JAV ( not a MD, DO, or PhD )

Treated with CK 4-2011.  Gleason of 3+4 , PSA 3.7
 PSA on 7-13 , 0.3
 PSA on 11-13 , 0.3
 PSA on 5-14 ,  0.3
 PSA on 7-14 ,  0.2
 PSA on 11-14,  0.2
PSA on 3-15, 0.2

Allen_E.
Posted: Wednesday, June 17, 2015 7:35 AM
Joined: 8/8/2010
Posts: 666


Ron, If I understand your current situation correctly, you have castrate-resistant PC (Xtandi is only approved for that), but you have no obvious mets identified on a bone scan. If that is the case, I want to tell you about a clinical trial that you may be eligible for. They give a new medicine consisting of an anti-PSMA antibody attached to an beta-emitter, Lu-177 (The placebo gets the anti-PSMA antibody without the beta-emitter - which is nonetheless active against the cancer). The cool thing about this medicine is that it may be able to kill off systemic micromets - at least some of them - that have not yet attached to bone. Lu-177 is also detectable with a gamma ray camera so they can see if there are any tumors it has attached to. They also give ketoconazole, which prevents adrenal sources of androgens. They are doing this trial at Weill Cornell in NYC. Contact info is in the following link: https://clinicaltrials.gov/ct2/show/NCT00859781
- Allen (not an MD)
viperfred
Posted: Thursday, June 18, 2015 7:45 AM
Joined: 10/10/2008
Posts: 836


Hi Ron, Thanks for keeping us informed of your progress and especially the Great News! Fred
ChicoXXX
Posted: Friday, June 19, 2015 4:07 AM
Joined: 10/10/2008
Posts: 431


Ron, Thanks for the update. I am so happy that it appears that you are again on a positive slope. I am sorry that it takes so many different approaches ( most of which I do not understand) to reach this state. Continued good fortune. We continue to keep all of us ( Pre and Post Toasties) in our prayers for our own success and those of others who will take journeys that have taken/are taking. Allen, Ron , Jav and Viperfred. Thank you so much for your continuing efforts to keep us informed of new treatments, trials and studies in the PC Area. Chico
JAV
Posted: Friday, June 19, 2015 2:31 PM
Joined: 10/29/2010
Posts: 736


Thanks, Chico, but I'm not even close to being informed/educated as Allen is. Allen amazes me. He is extremely dedicated in helping out those guys who are recently diagnosed and must be putting in hours and hours researching and talking to all his contacts in the medical community about CaP treatments and the latest developments. This Forum IMHO, is blessed to have Dr. Katz, Dr. Medberry and Allen participating.

Treated with CK 4-2011.  Gleason of 3+4 , PSA 3.7
 PSA on 7-13 , 0.3
 PSA on 11-13 , 0.3
 PSA on 5-14 ,  0.3
 PSA on 7-14 ,  0.2
 PSA on 11-14,  0.2
PSA on 3-15, 0.2

viperfred
Posted: Friday, June 19, 2015 11:42 PM
Joined: 10/10/2008
Posts: 836


Ditto
Ralph Givens
Posted: Wednesday, August 12, 2015 7:15 AM
Joined: 8/11/2015
Posts: 2


Good Morning, This is Ralph After 78 wonderful years including almost 4 years since CKT (Oct, 2011), PSA is now 4.77 and doubled from just a year ago. Gleason was 3-4 and PSA 4.66 at time of CKT (PSA was always around 2.00 before). PSA was just below 2.0 for two years after CKT. So, your history was very interesting as your experience may fit my future. Have found growth on the spine with some pain and will biopsy soon if possible as it is only 4mm. Don't know if cancer had already spread in the blood before CKT or afterward. Also, do not know if cancer is back in prostate as CT scan cannot see beyond my two hip transplants. There is no other evidence of bone cancer after many different imaging sessions. My CKT doctor is a radiology oncologist but I wonder if also finding an oncologist specialist current with latest options available for steering my future treatment would be best. Also, looking at adding natural cancer fighting foods to my diet. Any comments would be appreciated and good luck to you! Thanks for your input, Ralph Givens
 

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