My husband was diagnosed in 2007 at age 57, Gleason 9 (5+4), PSA 18. [PSA at age 50 was 10 - a 3 core biopsy showed nothing so he was told he simply had a high baseline PSA]. He started ADT in late 2007 and had iodine brachytherapy in 2008. PSA rose rapidly after surgery. Combidex scan in Holland showed several lymph nodes were involved. IMRT with Dr. Dattoli in 2009 with ADT - PSA nadir near 0 six months after completing radiation. PSA began rising 4 months after stopping ADT. Started seeing Dr. Myers. ADT and Leukine (along with all the other meds Dr. Myers prescribes and recommends). He became castrate resistant in 2011 or 2012. Doubling time was 21 days at one point. Scans at Sand Lakes in 2012 showed about 28 bone mets. ADT with switch to Firmagon with Leukine again. Began Xtandi and HDK - initial results disappointing and the drugs took their toll physically. Changed to Zytiga in 2013, again with disappointing results. Xofigo in 2014 along with continued Zytiga. Excellent results from Xofigo, but PSA began rising 3 months after ending Xofigo. Continued Zytiga through 2015, became physically weak, etc. PSA continued to rise to 18. Six rounds of Taxotere in 2016 - scans showed an increase in bone mets after 6th treatment and PSA rose after an initial drop. He decided that he'd had NO quality of life since 2012 and opted for palliative care for problems he developed during treatments - lymphedema, peripheral neuropathy, Parkinsonism, adrenal insufficiency - you name it, he had it. He got a little stronger and felt better with treatment of side effects (lymphedema resolved with PT and compression stockings). He's still unable to do very much - perhaps one activity a day such as a haircut, trip to drugstore, etc. Those activities wear him out. He occasionally, with no notice, will start shaking uncontrollably, get very cold, and then run a temperature of 103.2 to 103.5. After several to many hours, the fever will break. He needs a lot of rest. He has pain from some of his bone mets, but not all. Latest scan showed numerous bone mets - well over 28 different bones involved, several with multiple mets. PSA is now over 300, doubling time is just under one month. Apparently retreatment with Xofigo is a no-go, Actinium 225 for PCa is in the future, he cannot and will not tolerate any more chemo [the doctor said he was a poor candidate health-wise to start with and the next chemo option could kill him]. Genetic testing for prostate cancer markers was recently done - no results yet. He'll have testing for heritable mutations next week. Even if they find a mutation that's treatable with one of the new meds, most aren't approved for prostate cancer yet. So, with increasingly poor physical reactions to Xtandi, Zytiga, and Taxotere, what's left other than Provenge? I respect his desire to stop active treatment because I know what his life is like. He’s considering clinical trials (now that his cancer has been let loose, so to speak), but he won’t do any chemo, Zytiga, or Xtandi. I appreciate advice!
Gleason 9 (5+4) 10+ years ago - widel... - Advanced Prostate...
Gleason 9 (5+4) 10+ years ago - widely metastatic cancer and running out of options!
- Biopsy
- Clinical trials
- Chemotherapy
- Iodine
- PSA
- Prostate cancer
- Fractures
- Genetic test
- Palliative-care
- Provenge
- ADT
- Prostate disease
- Brachytherapy
- Surgery
- Zytiga
- Xtandi
- Taxotere
- Firmagon
- IMRT
- Leukine
- Xofigo
I don't have advice, but the deepest respect and admiration. Your husband did better than 90% than all the other metastasized prostate cancer patients.
The info on immune therapy for prostate cancer is not much. But I did talk it over with my oncologist last week. He is very impressed with the results on other cancer. So,if you do have $ 100 000.00, it is an option. You may need to take it in in the UK.
I know he has beaten the odds but I think he feels that he's done his best and he's tired of fighting it. Thank you for your comments on immunotherapy - I'll be looking into it more seriously.
100k ..Few people have that available...$$$$$$ big pharma???
What a smart and gallant fight you two have waged against CRPC. Good going. You are top 10%ers already.
I am sure you are familiar with estradiol patches through your consultations with Dr. Myers. For me, estradiol has helped reduce the physical effects of both the cancer and the treatments. You might want to start (.05/mg daily) or continue that treatment. Secondly, while you are off Zytiga, you may want to continue with 5-10 mg of prednisone daily. Prednisone plus Advil are the best reducers of bone pain for me.
I know the going is hard. I wish you hope through your tests and the treatments they might indicate, and comfort. God bless you both.
Bob
Thank you for your kind words.
My husband stopped estradiol patches when he switched to palliative care. Due to estradiol and years of ADT, he developed gynecomastacia - so surprise to anyone on this site. He had a double mastectomy several years ago and somehow I think he'd rather die from PCa than grow breast tissue again. He's grown tired of the fight.
He's now on hydrocortisone to counteract the problems from taking prednisone for so many years - from 2012 - 2016.
So far, ibuprofen takes care of his pain - that's the good news!
Best wishes for both of your husband and yourself. He has lived 10 years with this horrible disease and that is an accomplishment. My cancer spread to my organs and bones about a year ago and I am now on ADT and Taxotere so I understand the difficulty he is having. I had genetic testing but nothing is available for me. I am glad of that as I don't want my kids to have cancer inherited from me. For me it is one day at a time and hope that something comes along that will help me but I doubt that miracle will come in time for me. Enjoy life as best the both of you can.
I was also a patient of Dr. Myers. With his imminent retirement, he is referring some patients to Dr. Charles Drake at Columbia/Presbyterian in NYC. Dr. Drake is the guy to see for immunotherapy, which may offer some hope. Best wishes.
Thank you - I'll look into Dr. Drake. As long as side effects are minimal to none, he's willing to try anything.
I feel the pain of your Husband, This Damn disease. His stats sound almost identical to mine. dx 2006 GS10,ect. Yesterday was a bad day for me, sick after chemo(around day 4) and I came to the realization of how much quality of life meant to me,I felt I was ready to stop treatment, I have also exhausted all treatments except second line chemo. Each of us has to make our own decisions in this fight, and I know how hard it can be. I feel somewhat better today than I did the past few days , but I know this chemo can not go on forever, I too have done my best, and I am getting tired of the fight . I wish you the best.
Dan
Dan,
keep fighting...I just read a study where 2nd line chemo can buy you another 16 months....enough time to try new treatments in the pipeline
Gus
Thanks Gus, I looked at that study with great hope when you posted it, It has been a hard couple days, but better today, I managed to get to get out of bed and get some Alaskan Cod to to beer batter, hopefuly be better tomorrow< i hope I can find some more gumption and get active again. All your post give me great hope, but lately I seem to be facing up to the inevitable.I wish i could get out on the boat.
Wow, Dan. I know where you're coming from, not literally, but I see and feel what it's like for my husband. See below for the information on Lu 177 PSMA. Perhaps we can meet in Houston? Your comment about getting back on your boat is similar to my husband's comments. If he could just swing a golf club again he'd be happy. He'd be ecstatic if he could play just 9 holes!
Thank You for your kind words Gus!
cabozantanib?
medpagetoday.com/meetingcov...
Hi Martin, The study Gus was refering to for second line chemo is cabitaxel/Javenta. Cabozantinib is a drug that showed great promise in reducing bone mets a few years back, It was a very hard drug as far as side effects and did not pass clinical trials, I knew men who were on this, and they suffered a lot from it. Sisira has a great response below.
Dan
I am really sorry to have learned your husband's deteriorating condition and I empathize with you. Thank you for sharing this case with our group, whilst including a very clear description of every detail. He has been treated with the best known physicians such as Dr.Myres and Dr.Dattoli and also with the right type of treatment protocols. But the long term survival benefits of such sequencing approach in treatment depends on the specific genetic factors of each individual case. Both of you must be really proud of having been able to fight with courage and success against all odds for over 10 years and you should never give up hopes. You may consider the following further treatments which you don't seem to have used with the concurrence of your physicians.
- 2nd line chemotherapy
- Immuno-therapy
- Transdermal Eastradiol Patches with Prednisone or Dexamethosone
- Lu PSMA Therapy
- Identifying the specific gene mutations of CRPC and going for target treatment
- Entering a suitable Trial depending on eligibility
Wish you the best and the luck for the success in yous progress.
Sisira
Hi
Sisira's post above referred to PSMA Lutetium Therapy. My brother has been fighting metastatic CRPC for a few years. Ezalutamide (Xtandi) has stabilised his condition over the past year. He has also been on a specific diet and exercise regime which has also assisted him. Two specialists had told him he had two years to sort his affairs out. He had extensive hyperthermia at a Melbourne clinic some months back with a view to lightening his 30 mets.
As the author of two best selling books on prostate cancer and a regular speaker on PCa in Australia, I spend hours per week researching the PCa research and treatment literature. This lead me to review the progress of Lutetium -177 PSMA Therapy which is also referred to as Theranostics. I discovered that 150 men had been treated in Australia over the past year with good results. I also found the results of a small clinical trial undertaken by the Peter MacCallum Cancer Institute in Melbourne.
I introduced my brother to the team who have done the 150 men already, and who had just started treating patients in Sydney (where we live). My brother had new glucose PET scan and PSA before he started treatment: 30 mets and PSA 9.5. After two Lutetium -177 injections, all except one mets have gone and his PSA is down to 1.47.
This treatment is widely available in Germany and a clinical trial is recruiting in Toronto. Note that it does not work on the 10% of men who don't have a PSMA receptor on the PCa cells. The only impediment to this treatment becoming a complete game changer is its cost of US$7K per injection.
More details can be found on my web site at anabcofprostatecancer.com.au under Newsletter #6.
I'm not sure how I missed this one; however, a trial opened up in Houston TX in January and they're recruiting! I'll be calling them this morning. Thank you for this lead - it has given me hope. He was denied a second treatment with Xofigo, which, without the concurrent side effects of Zytiga (he did poorly disease-wise and physically while on Zytiga), would have given him the quality of life he so desires, even if it doesn't last a long time. That's why we're so interested in Actinium 225, but it he probably won't live long enough for it to get to trial. Lu PSMA sounds very promising - thank you!
Alan
What are the possible sideeffects for Lutetium-177 injections?
Rich
Only dryness of the mouth in about 25% of men as the Lu is also absorbed into the saliva glands. My brother took a glass of water to bed with him and drank regularly during the day. Situation back to normal in a few days.
No other side effects. Must keep clear (2m away) of others for a few days after the injection.
Alan,
Re. 2 meters away for a few days is that because of radiation.
Rich
Yes. I also noted yesterday that Weill Cornell Medicine are recruiting for a Phase 1 dose evaluation trial. I'm also advised that some patients experience a drop in their blood count.
My brother had one lower dose injection and one "standard" dose injection, due to his attendant Ca of the ureter..
Alan,
Thank you for the information. You are a credit to this forum.
Rich
Hello Alan
I live in the Toronto area. Do you have a reference or contact info for the clinical trial recruiting now?
Thanks
There are Trials involving Lutetium-177 in Toronto at the Princess Margaret Cancer Centre and at the Sunnybrook Health Sciences Centre.
They refer to it as "Lu-DOTATATE" in these Trials.
This Search result for Canadian Clinical Trials will reveal inks for more details about the Trials.
canadiancancertrials.ca/Def...
Charles
See also:
clinicaltrials.gov/ct2/show...
Princess Margaret Cancer Centre Toronto Ontario
Recruiting:
Rebecca Wong, MD
416-946-2919
610 University Avenue
Toronto, Ontario M5G 2M9
rebecca.wong@rmp.uhn.ca
At Sunnybrook:
sunnybrook.ca/trials/item/?...
Sunnybrook Odette Cancer Center
Contact: Sten Myrehaug, M.D.
radonc.utoronto.ca/content/...
Charles
I'm now 57 as he was when he started his trip with APC. ..It's been such a journey for the both of you for these past ten years..My wife and I are beginners.Ive been treated for 2yrs..so I'm new to all of this..It is incredible what he has already withstood..Like me ,he has love.in You..like I have with my sweetheart. I am sure that you both have been through hell...It's hard to describe to others how it is to have, or to live ,with APC ,or how devastating treatments and all the after effects can be. We pray for the both of you ..I'm sorry for all or the testing that you are going through..Thank you for sharing you story...Please take care of yourself also in this difficult time..
I wanted to let everyone know that my husband, Bob, passed away on Monday evening, November 6. He was able to go to Duke in late August and was approved for Keytruda under Merck's open access program. However, that was his last trip; he wasn't able to do the treatment because it required travel to Duke every three weeks. He started home hospice the day after returning from Duke and passed away peacefully at home with me at his side. Ten and one-half years of continuous treatment with perhaps a four-month remission eventually took its toll. I felt a sense of calm the day after he left us. No matter how hard it may seem now, it's nothing compared to how difficult his last year was -- especially his last two months. He was always so strong in front of others that many people were surprised when he died! He never complained and for many years he simply told people he was living with cancer. The first five years were filled with travel for treatments, scans, and tests. He had fatigue from the treatments but was able to enjoy life during that time. However, he truly" battled" cancer for the past 5 years. I miss my husband, my friend. He was only 68. Now I'm learning that there's more to life than researching everything about prostate cancer. Changing the mind-set will be a process, but our children, family, and friends have been so helpful. I'm strong, I'll be fine, although I'm sure there will be some grief counseling for me in the near future. I'll continue to monitor your posts and I hope for all of you that the promising new treatments on the horizon will be available to you when you need them. I wish my best for all of you and your caretakers! Cindy
Have you considered bipolar androgen therapy . Look under clinical trials it’s being conducted at Johns Hopkins Hospital by Dr. Denmeade MD. I am participating in the study beginning in January. Best of luck to you!
Off label medications could offer some options.
Mebendazole, Doxycycline etc.
Care Oncology in the UK specialise in this. I know one study where men took 600mg of Mebendazole a day yielded excellent results.
Low dose cabazitazel for bone marrow infiltration 
Decisions
Slowly Rising PSA and Chromogranin-A
Zytiga failed, starting Xtandi. What to expect for my dad. 
Docetaxel/Taxotere. 2nd time in 3 years. It's a no go this time. No benefit after 3 infusions.
