I am new to this group so I will introduce myself first. I am a male 59 Yrs of age , located in New Delhi. I have retired recently ( DEC 2019) from active duty in The INDIAN ARMY, as a General . I have been diagnosed on 01 July 2020 ,as Pca Stg 4, Gleason Score 9, with bone mets. I have undergone MRI for spinal chord suppression, fortunately none so far. Started wit ADT (Degarelix) and Abiraterone with Prednisone since Ist July 2020. My PSA readings ----25 Jun 2020---258, 27 July2020---7.8, 25 Aug 2020---2.8. I have undergone tests for BRACA 1 & 2 yesterday and the results are awaited.
I shall be grateful in case any member can share his experience with Immuno Therapy and Targeted Therapy please.
Thanks
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doklam2017
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Welcome General....Your first 2 months of response to treatment indicates a long term survival. Let me explain why ....You started with PSA 258 and achieved a low PSA 2.8. This means that Androgen deprivation is working. If you continue this same path and achieve a Nadir PSA of less than 1 then, it can be said that median survival can be in the range of 6 to 8 years..note that this is median which means 50% people achieve more time after this number. I suggest you keep this track of treatment with close monitoring of PSA and ALP.
Some other supportive measures can be being physically active , using anti cancer foods such as Turmeric, Ginger, Garlic, Onion, Cauliflower, Black seed oil, cooked red tomatoes, pomegranade seeds, dried dark red grapes (resvesterol) etc. Also, chewing fresh Neem leaves 7 or 11 counts every morning.
I have followed all this and my PSA fell down from 830 to 0.2 in 11 months and now I am off all ADT meds for last 9 months (called ADT vacation/off treatment period)
I am watching biomarkers like PSA, ALP, Albumin, Hb%, Liver and kidney functions and NL Ratio ,PL Ratio, LM Ratio etc every 3 weeks. If I see PSA and ALP rising, I plan to have 2nd round of ADT meds followed by another vacation.
Welcome, right now it appears your course of treatment is working very well. I would not change anything. You could be on Degarelix and Abiratorone for a long time.
Welcome General! I too am 59 .. I’ve had over five years with #4 dx.. it looks like you have the pc on the downward trajectory ... Good luck inhibiting the pc.... it’s no friend to man or family . We all suffer . I pray for you to contain it for many years .. I salute you Sir!
Welcome to the group that no one wants to be part of brother. You’ll find a lot of stage 4 brothers here including myself. Some of the most knowledgeable and finest PCa minds hang here as well. We all “ get it “ with what’s currently happening to you and what will happen in your future ... you’ll find experienced sympathetic members here . Your current treatment sounds Right because it seems to be working right and could provide you with considerable extension of your life ... let’s all hope it does. Some members here have held on for decades and are still going. Inspiration for us all.
(1) Degarelix and Abiraterone can cause obesity, increase in cholesterol and increase in blood pressure and blood sugar. We need to monitor all three regularly and treat them if they are coming abnormal.
(2) There was initial excitement about Immuno-therapy but lately we do not hear much about it possibly as it has not been found to be very effective.
How many bone metastases did they find and where are they?
Unfortunately, immunotherapies don't work well for prostate cancer as they do for some other cancers, except in rare cases (which you will learn when you get your BRCA 1 /2 report.
In India, you may be able to get certain radiopharmaceuticals called Lu-177-PSMA or Radium-223. They are usually used in men who have more progressed prostate cancer, but they may work even better in men who are newly diagnosed. India's regulations may be less restrictive.
At the outset , I wish to thank all the members who have responded to my first post , from the core of my heart. Answering, sequentially to the issues raised-
1. The Bone Mets. I have predominantly Sclerotic Lesions in multiple osseous structures, namely head of right humerus, bilateral scapulae, sternum, few ribs, multiple dorso - lumbar vertebral bodies, including D-1.D-2,D-6, L-1,L-2,L-4, L-5, S-1, vertebrae, bilateral ileum and left pubis.
2. Managing Side-effects of Hormone Therapy. Thanks for your advice, I am free of any co -morbidities so far and have already consulted a cardiologist, dietician and have actually increased my exercise regime.
3. Latest Study On Prostrate Cancer. Guys , there is a study which has been commissioned by ASTRAZENECA in US and Spain this July. A parallel study is being conducted in India , in-fact by the oncologist who is treating me , which is looking at role of deficiency of PTEN in the mutation of cancer cells, in De novo PCa patients who are hormone sensitive. This study will assess the efficacy and safety of Capivasertib plus Abiraterone (+prednisone/prednisolone) plus androgen deprivation therapy (ADT) versus placebo plus Abiraterone (+prednisone/prednisolone) plus ADT in participants with mHSPC whose tumours are characterised by PTEN deficiency. PLEASE FOLLOW THIS LINK , AS THEY ARE STILL RECRUITING AND SOME MEMBERS CAN CERTAINLY BENEFIT clinicaltrials.gov/ct2/show....
After my BRACA1 &2 test results, if I am positive, then I shall be enrolled in this study and will be able to share my experience.
As others mentioned, immunotherapy has not shown much promise, with the exception of Provenge, which is usually given after hormone resistance here in the US, but arguments could be made for its early use. I did just listen to this interesting video on the use of immunotherapy in prostate cancer and it discusses times when it may be of benefit: soundcloud.com/prostate-onc...
If you test positive for a BRAC1/2 mutation, than a PARP inhibitor may be used. Here in the states, two PARP inhibitors were recently approved for prostate cancer, Rubraca and Lynpraza, for use after hormonal therapies have failed. It is possible that PARP inhibitors could have benefit earlier in the game, but I don't have the experience to comment on that.
Every Prostate tumor has three types of cells, (1) Totally androgen sensitive (2) Partially androgen sensitive and (3) Fully Androgen resistant.
How long your PSA will fall in initial ADT treatment depends on the ratio of these three types of cells which varies from one man to another.
e.g. If someone has more than 99% cells which are fully androgen sensitive, then your PSA
likely will fall 99%. By God's grace ,my PSA fell 99.8 % after 11 months of ADT.
If say someone has half of the cell which are fully androgen sensitive and the remaining half is fully androgen resistant, PSA is likely to fall by about 50 to 60 %
Lowest point of PSA fall (called Nadir PSA) predicts approx. length of survival according to multiple research studies. Lower the Nadir PSA, longer the survival. The other parameter is
Time to Nadir, if PSA achieves Nadir in less than 6 months, its not as good. If more than 6 months it takes to Nadir, that indicates long survival.
There is also a relation of testosterone Nadir and long survival. If with ADT, someones testosterone level falls below 10, its very good sign for long term survival.
How high someones PSA was in the beginning has NO relationship to longterm survival.
In fact, some tumors secrete very little PSA and they are some of the most aggressive ones.
Bodysculpture, Your cancer cells are responding well to the treatment and it does not matter if PSA falls straight down or in zig zag pattern as long as trazectory is downwards.
There is a 2017 study at Dana Farber Cancer Institute concludes:
The median survival is 6 1/2 years if PSA falls to 0.2 or lower in first year.
The median survival is 4 1/2 years if PSA falls between 0.3 to 4.0 .
The median survival is 2 years if PSA falls above 4.0.
Please note that these are the lowest point of PSA after treatment in first year (Nadir PSA) The survival data is a group based statistic and may not necessarily apply to individual patients but it does give some approximate idea. Also, these numbers are Median years, which means 50% of patients live longer than years mentioned.
Individual variation in men may also be related to co-morbidities, degree of physical exercise, type of food (plant based vs Animal based) , emotional stress , support system, compliance with treatment and so forth.
Welcome doklam2017, I to a new to this group and have been doing a lot of reading. This group is comprised of a lot of well informed individuals who are very supportive. I had a PSA of 308 and my Mets has established itself in many locations and lymph nodes. In Dec 2019 i was having severe pain in my legs And was immediately prescribed oxy’s and hydromorphone. In Feb 2020 they radiated my L4 and my left hip which eliminated the pain. On Zytiga and Eligard injections and my PSA was 0.013 in July.
You will learn a lot here from fellow warriors who fight the fight daily.
I have nothing to add to the superb distillations of the medical wisdom offered by the brilliant minds in this group, but to welcome you to our ranks. Most newbies seem shell-shocked by their diagnosis and their posts exude fear at every turn, whereas you, General, seem prepared for the fight, both mentally and physically. I applaud your courage. I would also encourage you to relax your training and allow yourself to be vulnerable to the men in this group. We can be an invaluable source of emotional support when the treatments act upon your emotions in ways you’ve never experienced before.
We’re sorry your disease has brought you here, but glad to have you with us!
Welcome Gen doclam. To the above excellent information for you to digest and in answer to your inquiry about immunological treatment. I would suggest you inquire about and ask for Provenge treatment at this early stage and not wait! That most here in the west are put on ADT and nothing further is done typically until there is profession is a default and not necessarily optimal strategy.
Now that the clinical experience with Provenge is more robust it has become clear that those who have the best survival response are 1) those who have it earlier. 2) those who have lower PSA. And 3) those who have it after chemo or radiation, which provides more antigen to stimulate the immune response, apparently.
The curious thang about Provenge is that the survival benefit die not correlate with any further change in PSA. So you don’t know how much good it is actually providing as an individual on the battlefield. But some food it does.
I had Provenge 9 years ago when I was HS and BCR (on Casodex at the time).
Now, much to my happy surprise, my cancer has progressed extremely slowly.
Two pelvic nodes only on PSMA scans this year and PSA still below 0.2 currently off ADT, though will be resuming this soon.
Is Provenge responsible for this? It is
impossible to know. But I am going now for repeat round of Provenge to reinforce the immune response.
I couldn't agree with you more on the use of Provenge and its efficacy . However, the docs in India are not very favourably disposed towards immunotherapy as it is not CONVENTIONAL and does not have the backing of conclusive data.
Well it may not be considered "conventional" but it seems to work and is supported by sound clinical science. Here is a discussion from a major review on th erole of Provenge in advanced prostate cancer treatment:
While their is still some areas of uncertainty of how and when it may best be used, I would not allow them to deny me this approved treatment that is available today. Fight for it!
"It is known that sipuleucel-T is an effective treatment option for patients with early mCRPC. Ongoing
research focuses on how to maximize its potential in the context of additional standard of care options,
many of which were approved subsequent to the IMPACT study. A few studies have suggested that
concurrent treatment with abiraterone and enzalutamide does not lead to a decrease in the ex vivo
immunologic response and manufactured cellular product of sipuleucel-T. However, these are only
phase II trials and thus further studies are needed to evaluate outcomes.
A proposed therapeutic algorithm in mCRPC is the addition of sipuleucel-T early on when patients
have asymptomatic disease with low tumor burden and lower PSA levels. In certain patients with
higher risk features, sipuleucel-T may be added to enzalutamide or abiraterone acetate at the time of
PSA progression without radiographic progression. Patients who develop resistance to the novel
hormonal agents may then be chemotherapy candidates for docetaxel and cabazitaxel. Patients who go
on to develop symptomatic bone metastases should be candidates for radium-223.
Currently in our practice we will administer sipuleucel-T alone to informed patients who have
asymptomatic, subjectively low tumor burden disease with typically a low PSA level (<20 ng/ml), and
follow them for disease progression. However, in patients with rapidly rising PSA (DT < 3 months),
PSA levels > 50 ng/ml, minimally-symptomatic disease, or subjectively higher tumor burden, we have
increasingly administered sipuleucel-T in the context of additional hormonal therapy (either
enzalutamide or abiraterone acetate) either concomitantly or immediately following. Given the very
separate mechanisms of action of these treatments, the clinical data suggesting no detrimental effect on
mechanism of action, and with the goal of improving OS with each, we feel concomitant use is
reasonable. The major advantage is that patients are able to achieve disease control (with secondary
hormonal therapy), while maximizing the survival benefit to sipuleucel-T by treating them early in
their CRPC disease course.
Recent and ongoing studies also address the possibilities of expanding the patient populations for
which sipuleucel-T is used. Phase II studies have shown that patients with localized prostate cancer and
those with CSPC may benefit from sipuleucel-T. In summary, sipuleucel-T is an exciting immune
therapy in the treatment of prostate cancer but its optimal sequencing with other approved therapies of
I am planning to convince my team to try and exploit the advantages of immuno- therapy. The question now arises, that at what stage should it be introduced?
There are various options available for introduction of immuno-therapy , specially after FDA approval of Pembrolizumab (Kytruda).
Yes, not just immunotherapy in general but Provenge specifically is now established to be beneficial to PC survival. And the evidence indicates that giving it earlier in the disease is better. Changes the arc of progression. That is worth fighting for rather than waiting IMO. Good luck.
You definitely had the right start. Firmagon is great to start with and you will be given an option to later move on to Lupron if you wish to.
A common approach now is to either start Chemo or Zytiga. So again you’re on track.
I think if Zytiga ever fails, the next line of treatment would be chemo and not immunotherapy. Again it depends on if you test positive to any gene mapping.
May I know where you’re being treated at and by whom? I wish you the the best in this long journey.
Sorry to hear about your diagnosis General sahib. Welcome to the group none of us want to be in. The good news is that there is lots of very useful advise and support here, as you have already seen.
Others have given some very good medical and other advise. I would like to add my 2 cents worth on the other side. I was diagnosed 12-months ago at the age of 54 with similarly aggressive (9 GS) stage IV cancer. It can take some time to accept it. It is difficult to sleep the first few weeks/months. Take some time for yourself and see what else you can do to help yourself on the spiritual side of things. We all have to die someday, it is good to be prepared. If you have not already, get your will etc. done so that it is out of your mind. Work on getting some acceptance on what you have, it will help ease your mind and eventually sleep. Add some sleeping aids if you need them, good sleep is important. There are lots of safe ayurvedic options available in India. Work on getting your mind free and try to remove the things in your life that bother you. For many, including me the diagnosis was a big eye opener that made me take stock of my life, what I have done and what I need to get done to make things ok for those I will eventually leave behind. If you do have a list, get that out of the way.
While it is good to be prepared, you should also know, like others have pointed out, given you very positive response to ADT, you have a reasonable outlook at controlling this for a long time, plus new treatments are coming up every day.
Stay happy, positive and live life to the fullest every day. Wishing you peace and happiness.
Hello General doklam2017, I was wondering about the BRCA1&2 results and whether it elicited any change in treatment from ADT, abiraterone and prednisone. You were considering some trial using Capivasertib as well as immunotherapy such as Provenge.
I would like to add for people on ADT -a bone strengthening agent such as Zometa is prescribed monthly or quarterly to prevent osteoporosis. One must get a DEXA scan done to determine if it is required in your case. In case you need Zometa make sure to get a thorough dental checkup and get all dental work completed before starting these infusions. Also, addition of NSAID celecoxib to Zometa is known to provide added benefit.
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