Thanks to the community for taking out time and embarking on knowledge and empowerment for patients and families who are struggling to survive this testing disease.My father was diagnosed with prostate cancer (Azure) in 2019. His Gleason score was 9 (5+4) and PSA was > 100 (Machine Limitations). Now after 3 years and 16 cycles of Chemotherapy ( 10 Docxetexal and 6 Carboxal (Jevtana) ), Hormone therapy. He is still with us. A month ago after 6 cycles of Lu177 his PSA started rising from 32, his current PSA is 77 with cancer infiltrating his Bone Marrow. I have been researching a line of action against his condition since the start. For the first time in 3 years, I am feeling alone and hopeless. I read about Ac225 and Ra223 but they are immensely powerful therapy and my father is now very weak. I am afraid he would not survive their side effects. I am also looking into SBRT as the next possible line of action to first minimize the Pain he struggles with every day. Is there anything else that I can look into apart from Immunotherapy? Is there some light at the end of this tunnel? I am just asking for guidance. I will ask doctors for advice but for guidance I come here. Please let me know if there is something I can look into.Many thanks, Love and Respect from IndiaShahbaz Azmi
Lu 177 also failed after 6 Cycles. 16... - Advanced Prostate...
Lu 177 also failed after 6 Cycles. 16 rounds of Chemo (10 Docxetexal and 6 Jevtana) previously failed. What could be next?
Did he ever had a biopsy to study the genome, histology and IHC of the mets? The cancer may have mutations which could make it susceptible to treatment with olaparib, keytruda or similar drugs or with chemo plus platinum compounds.
3 weeks ago, he had biopsy to study the genome. We were about to go to the hospital to get info on it but health of my father sank and a week ago we had to take him to local hospital. He is recovering and soon we will go to check on his genome report. I will keep this space updated.
I am afraid, he wont survive any chemo anymore. He is 64 but now after 16 rounds of chemo and 6 rounds of nuclear therapy, he can barely stand. Anymore chemo would be our last option. Still his choice though.
He may be able to be treated with Olaparib or Keytruda or similar drugs, depending on the mutations in the cancer. The only immunotherapy shown to prolong life is Provenge. Apceden has only case reports published , some of them in combination with chemo.
The biopsy is essential to see if he can be treated with the drugs mentioned before.
Biopsy report came. It has some technical terms which I am not qualified enough to understand. Following are the details. I would be happy to know hat it means:
1. MLH1
INTACT NUCLEAR EXPRESSION.
2. PMS2
INTACT NUCLEAR EXPRESSION
3. MSH2
INTACT NUCLEAR EXPRESSION
4.MSH6
INTACT NUCLEAR EXPRESSION
BACKGROUND NONNEOPLASTIC TISSUE/ON SLIDE CONTROL PRESENT WITH INTACT NUCLEAR
EXPRESSION
IHC INTERPRETATION
NO LOSS OF NUCLEAR EXPRESSION OF MMR PROTEINS: MMR DEFICIENCY IS UNLIKELY.
IMPRESSION : MMR PROFICIENT
Would the above mentioned drugs would work on him??
Consult with your doctor.
My interpretation is that Keytruda or similar drugs will not work.
They do not mention any of the mutations associated with good response for treatment with Olaparib or similar drugs,
thanks tango65 . I hope there is something out there. There is always something. There must be something.
tango65 what about PROpel trail with olaprib and abiraterone . OP's father is abi naive so it might work despite no mutations ?
Do you need a biopsy to know if this treatment is possible ?
Saddened to read your postings and can only suggest a possible enquiry regarding an immunotherapy protocol that might be applicable for your DAD and is less debilitating.
Could be worth your time to research and I believe Dr. Onik travels to his patients *where ever in the World* if he deems his Protocol applicable.
Sincerely hoping for positive results going forward for you and your Dad.
Thanks addicted2cycling . I did wrote them a mail asking for help. Let us hope they will find time to respond.
In India, he can get APCEDEN immunotherapy.
Thanks Tall_Allen. I knew you would come to rescue. This whole community owes a lot to you. I did not forget your advice to me to be more active. Once I will see my family's situation through, I will be more active in this space and share my experience.
I will most definitely try APCEDEN. Let me know if something else comes to your mind.
Do you know any good centers for the same in India?
It looks like the researchers worked at:
The Medicity, Gurgaon, Haryana
Apollo Hospital, Bangalore
Apollo Hospital, Hyderabad
Ruby Hall Clinic, Pune
Sir Ganga Ram Hospital, New Delhi
I understand the feeling you are going through, i am in the same boat. The foreboding never stops.
Was he ever given 2nd line drugs like enzalutamide? I am currently trying to get tumor and germline genetic profile for my father to see if there any hits for PARP targeting.
We were on the way to get info on my father's biopsy for genetic profiling but his health went south. This week we will again try to go to the hospital to check on the report. I hope it will show some promises. I will keep this space updated.
good luck. We are in india too. DM me if you want to chat more.
i wish Gods blessings for your father.
Always remember that the Drs do all they can, but the results always remain in Gods hands.
if you find some time could you please fill out your profile information? It coul help us to make good recommendations.
Hi If you are hopeless read/google Joe Tippens protocol and maybe Rick Simpsons Oil. RSO. I followed Joe Tippens protocol during treatment and continue until this day 2017 Gleason 9. no genetic (5+4)all good so far..knock wood. His story is amazing. no side effects.
Sending love and prayers for
Hi
Hope you don't mind me writing to you. I noticed your reply.
I've been researching Joe Tippins protocol for my Dad. I have checked his blog out, and will definitely give it a go for my Dad, but want to try and get the best of CBD and the other ingredients listed. Is there any advice you can give as to what quality of theracurcumin and the other ingredients you are using. And are you supplementing with anything on top of his protocol? I want to make it 'count' so would like to acquire the best quality. Any pointers would be so much appreciated.
Many thanks
Omer
I second Kikinini..Kindly do share somes insight on ingredients you are using.
Thanks
I am very sorry for what you and your father have and continue to go through. I cannot offer any medical advice but I can offer just my own perspective on such major decisions.
Consider what he has been through. Consider the time you have had together and how much of it was time when he was not experiencing extreme side effects. Consider how much benefit each treatment has provided and for how long.
Most importantly, consider whether any of these treatments have a high likelihood for providing a meaningful extension to his overall survival in, while maintaining a quality of life where he is engaged and his pain is adequately managed. after going through surgery, chemo, radiation and continuing on ADT and abiraterone, I will only put myself through additional treatments, if they have low level side effects and give me a meaningful extension of life and quality of life.
These are very personal decisions. Letting your dad know that it is his decision how to proceed and you will be okay with whatever he decides, is so important. People will endure almost anything to not see their family suffer emotionally. He may benefit from treatment or it may just cause him more pain and less time with you.
I hope you both find the right path for you and it goes well...
i didn't understand what do you want to say? I don't understand why they didn't yet try Abiraterone?
I myself didn't try Abiraterone because they didn't recommend it to me.
After the failure of Abiraterone or Enzalutamide i will do a liquid biopsy and see if i coud get Olaparib or maybe Keytruda.
Olaparib could work for 2 years and Keytruda also for 2 more years. After that i could maybe try BAT. Or maybe some new version of Lutetium 177 and / or Actinium 225.
If I develop bone pain then SBRT to the painful mets if it is possible or alternatively Xofigo if it is possible.
I would always give priority to the standard of care options and wouldn't let myself into any clinical trial befor that.
If I would do Lutetium PSMA therapy than I would monitor the effectiveness of this therapy after every cycle and would stop.
I believe that this Lutetium treatment is still experimental and we are still learning how to administer it.
It is possible, i believe in Lutetium and Actinium treatment but maybe later when a medical science will learn more about the timing etc.
Hello sweet soldier . I've read your posts before and have noticed your knowledge and the intellect with which you speak and we are in very bad shape . It's very hard for me to use my hands bc of my own conditions but I'll try to put up a post asking for support as well. My father has the will and desire to fight ,but he is now frail ,after a year of a chemo trisl s1 l4l5 severely arthritic and the steroid shots didn't work . He has had a blood transfusion and iron infusion last week as well and iron infusion tomorrow. He's at the point where he's scared beyond words and in so much pain but refusing oxycodone though the two weeks he was on it he had a better quality of life. He can barely walk but has signed up for lu177 wo a second opinion as he can't think of comprehend well from the crushing exhaustion. Drs lollygagged around and he didn't let me intercede. I miss my father though he's still here and he is castrate resistant and the trial gave him a year of life but left him so weak. I'm beyond terrified of the lu177 bc he's so frail and bc he has smoldering leukemia . This is a man who with no quality of life wants to fight and I've told him I'd prefer he delay this bc his cancer did not spread but my father has made up his mind . In my eyes when you have cancer you have a million dollar price tag on your head at all times and his Dr didn't even suggest any of what you mentioned bc he's so not himself he's going into wo a second opinion and I'm trying to change this. The lupron is still working to a degree. Would enxulidamide or aberaterone be less lethal or risky to a very malnourished frail body ? What class of drugs are they . I wanted him to go for second opinion and possibly do BAT ,but I have no control . However if I lost a describe each of the poss meds that can be used he would be willing to read . Can you explain to me if they are less risky and would possibly offer more quality of life ? How harsh is lu177 from those you know who have used it vs effectiveness . Ty my friend and advice or just any word of hope would be helpful rt now
Bf reading my longer message I realized he has been on xtandi and I believe zytiga as well. I'm not quite sure why he's back on lupron but it has to be doing something. To the eye it appears his cancer has spread bc of the weight loss and weakness and disability and crushing exhaustion that he has spent the majority of the last over three months in bed in bed . No scan shows the cancer progressed and it's my humble opinion that it's the blood disorder that has made him decline to this extent . He is praying night and day for a miracle and I have no idea if he can get through lu177 bc honestly I would have probably given up but despite his lack of true life ,he's fighting so hard . Is there any hope in lu 177 or hope in anything on e the body has wasted to a great degree ? Every piece of my being is in synch with his soul and I'm breaking in every way .
Could you talk to your oncologist or find a second opinion. I really don't feel knowledgeable enough plus you really need a help of a specialist. Sorry not be able to answer your question better this time. Good luck. István Hoffmann
First, you mentioned "your father" in your post, but now you are speaking in the first person. I am not sure if am talking with a family member or the patient.
In either case, it sounds like the cancer is pretty advanced and many treatments have been used and failed. If you do not have faith in your doctor, you should see if you can get a second opinion (i.e. your abiraterone question) from another oncologist.
My response was primarily focused on the benefits versus the side effects of potential treatments. If the patient is nearing the end of treatment options, it can sometimes make sense to consider stopping treatment, assuming the treatment is not life extending with a high success rate for months or years of more time - with minimal side effects.
Quality of life is very important for enjoying spending time together with family and friends, so undertaking a treatment that has bad side effects with a low expectation for substantial benefit may take that time away. I am just suggesting you weigh these aspects when making a decision.
Good luck.
stumbled upon your profile, any update on your dad/treatments? 🙏🏻
PSA Bounce and 2nd Opinions
Gleason 7, diagnosed last november
mcrpc , stage iv with aggressive treatments
Father, 55yrs, diagnosed with prostate cancer
father psa 7 right after surgery
