Hi everyone, just chiming in on all the discussions. My father 78 yrs old diagnosed with PC in 2014, radical prostatectomy (robotics) 10 of 12 nodes positive. Radiation, Lupron treatment for 9 months PSA undetectable till November 2016. PET scan at Mayo in 2016 negative (choline) repeated when PSA >3.4 on august 2nd 2017. My father is a fully independent functioning man. He currently is tolerating lupron but didn't do well with Casodex. After the results from Wednesday 😞 We (my sister and I) are very worried. It has spread through this lymph system. Retroperitoneal till supraclavicular nodes. Lymphadenopathy found in pelvic nodes on the left side. We are feeling very heavy hearted. Studies of Life expectancy with Metastasis to lymph nodes is limited 18-22 months. It's rare for it to spread up this high into the thorax. My father is a fighter and he is in good spirits. Meanwhile my parents had planned a trip to Europe. We decided as a family that the best was for him to travel. Looking at the big picture, he has no pain and is feeling his best now. The plan is that he would begin chemo or XTdandi when he returns in 1 month from his trip. We are worried to delay treatment but again " the big picture" and quality of life is the concern. He may never get to do this vacation. We don't know.. so he will enjoy! And I just want him to be happy now. But I'm asking all of you out there if you have any diet/ supplements that you have tried. I want him to do something while in his vacation. Please let me know if you have any experience with certain brands of green tea? Or other herbal supplements.
My father diagnosed with Stage IV pro... - Advanced Prostate...
My father diagnosed with Stage IV prostate cancer mets to lymph nodes supraclavicular
Your doctors and your father will decide on chemo or Xtdandi or Zitiga in addition to Lupron. However, don't accept 18-22 months life expectancy for we are all different. Sure someone may not live long, but many of us will beat the odds, and remember many people live longer with that profile.. I have 3 lymph node tumors, and plan to live another 5 years and possible 7 or 10 years.
Keep good doctors, and read all you can about this disease. There are brothers on this forum who know more then I d,o and I am sure they will give you support.
Rich
Rich, thank you so much for the encouragement! We absolutely won't accept it and we will beat those months by YEARS. My father is lucky to not have metastasis to bone or organ, only to distant lymph nodes. I will stay positive and continue reading the posts on this website. Wish you well, stay strong!
Thank you
Hi there Dadysdaughter,a Veggie diet is recommended as cancer lives on cholesterol and sugar read books on Supper greens fresh Turmic any thing green and vegetables ect staves the cancer..plenty excise and positive thinking it's still early and the fight has just began so..set a routine and change yr dads eating life style ect..I wish you and yr father a safe and positive path..🙏👍..yr not alone we all here to preserve life as long as possible..🙏regards Nuray
Thank you Nuray. This will be a difficult one, especially changing diet. I will work on researching what options would be the best.
Hey two sisters, your dad is already 78 and this planned one month's vacation will definitely boost his hopes and add value to his quality of life. I don't think it will not adversely affect his prognosis since his treatments will begin immediately once he returns. Don't look at these statistics too seriously or accept the averages. Raise hopes by thinking that your dad is an exceptional case. All the same, learn as much as possible about this disease and how to manage it at various stages. For this one month if you want to put your dad on an intensive course of food and supplements, make the diet vegetarian, no dairy products, no sugar ( some fruits and nuts ok. ), Green Tea, Pomegranate juice, cooked tomatoes ( lycopene ) any other natural food rich in anti-oxidants. Vitamin D3 ( 4000iu per day ). This is just for a start and for the short period of one month. There is no substitute for regular EXCERCISES.
If you keep your communication lines open with our group, you will feel much stronger to support your dad to ensure many more years of happy living with his beloved family.
LET IT BE A REALITY!
Sisira
Thank you so much for your support, I feel this group has been so responsive to all the questions I have.
There is just so many limitations on diet, I don't know how possible and open he will be to vegan.. again this is just the beginning and changing his diet while adding supplements has already (2 days) is difficult.. I don't know how to express the importance of diet while he is on vacation. I feel as though if I say anything it gets him down..
if you have any other recommendations as far as diet/ supplement s let me know. This going straight vegan is merly impossible ..
Thank you
Daughter, don't worry for now. It is not good to force anything on him. The trick is to MOTIVATE him. This needs transfer of knowledge by discussion before things get worse and go beyond the POINT OF NO RETURN . It is basically a HEART HEALTHY diet which is equally effective in managing prostate cancer. Avoid red meat. Fish and salmon really good. When he understands the benefits gradually he will make his own decisions to extend his own life and who will not! Whilst allowing him to enjoy his life keep on discussing tactfully about the tough battle we have to fight. To be a well informed patient is a great achievement and will make the fight at least 75% easier than the bliss of ignorance.
Cheers
Sisira
I have read so much about flour/sugar feeding Cancer. I can just educate him about it and hopefully he will adhere. I just wish there was a way that he could at least enjoy everything now..
Thank you again for all your input!
Hi Sisera,
Our father was just started on Xtandi, so far minimal side effects (2 weeks), he was told by oncologist that he should not take green tea extract and Turmeric when on Xtandi. So far I have him on D3, calcium, pomegranate extract. His diet has changed -to a organic, vegetarian diet (as much as possible) he might have 4 ounces of chicken a week, and eggs 1x a week. His appetite is not as before. We are being very positive and so is he. I just want to know if Xtandi along with Lupron is working, his PSA was 3.6 August 1st, it had been rising 1.0 every month since June 2017. His last PSA on Sept 26th (4.16).. I was hoping and praying it dropped more drastically!
I have been searching online as well as in this group for other individuals that have metastasis only to lymph. Distant lymph such as cervical nodes. I have only found rare cases that have been documented. My fathers metastasis is along the lymph chain only from the pelvic area to his neck area. I just wish I knew what to expect. What happens, is it manageable? there is no data out there yet for only this type of metastasis.
Hello D'daughter,
Thank you for writing to me again. Glad to learn that you are handling your dad's PCa with confidence and despite the unexpected elevation in PSA, the treatment and dieting aspects look very sound. Don't worry, if your doctor advises not to take green tea extract and turmeric, just follow his advice ( I don't understand the reason ). Taking these supplements won't make much of a difference. What is more important is to focus on the main treatment protocol and get its maximum benefit. I would like to emphasize on one important point at this stage. That is you must bear in mind that PCa is heterogeneous, meaning there are different types of cells in its population. Some cells ( many ) have androgen receptors and some do not have androgen receptors and thus they are hormone insensitive/refractive. They are very dangerous and use various other growth factors for their progression. They may not produce PSA that their attack can be silent but lethal! Strong androgen related drugs we use for metastatic advanced PCa such as Zytiga and Xtandi cannot deal with these PCa cells which do not have androgen receptors ( refractive type ) and thus the decease will progress. Only chemotheraputic drugs which are cytotoxic ( killing cells ) can destroy such cells. Therefore, in making treatment decisions at this stage, especially if your dad's PCa is of high Gleason Score, using a combination of chemo-hormonal therapy ( Docetaxel + Zytiga or Xtandi ) as early as possible may be considered as more appropriate. The recently concluded Trials : STAMPEDE, CHAARTED and LATITUDE have determined the significant survival benefits of using chemotherapy early combined with the above drugs. AR-V7 mutations are also resistant to Zytiga and Xtandi. Hope you may be able to use this information during consultations with your doctors.
Good luck!
Sisira
Support your Dad and honor the decisions he has made during this ordeal. I have never taken supplements so there is little value that I can add to your query.
Gourd Dancer
Sorry to hear about your dad. I still remember that 10 PM call that told me I gad advanced cancer. Please do NOT pay that much attention to the 18-22 months life expectancy. Rather use that as a need to take the cancer seriously. But, at the same time, let your father enjoy life and make wonderful memories with you.
Does your medical oncologist know about the results from the Stampede and Latitude trials which were published last June? They found great results using a combination of two hormonal therapies at the same time. It may be an alternative to chemo. Some links are is listed below:
nejm.org/doi/full/10.1056/N...
Not saying that you should change the treatment plan, but it is something to discuss with the Medical Oncologist. I was on Lupron for a year when they added Zytiga to my mix last June. So far still going strong.
Please know that there are a lot of us still here even though the statistics say we should be gone a long time ago. Twenty months ago they found my Stage 4D1 cancer (migrated to the pelvic area). To make is worse, it is a rare form (Ductal), that is hard to treat or even detect (30% of my cancer does not produce PSA). I had and continue to have agressive treatments. But that did not stop me from enjoying life. I still do multiday bike rides, SCUBA in the Caribbean, camp and a lot of other activities. Yes, not at the same pace as two years ago, but still pretty good for a 60 year old man. There is every reason to believe that your father will be here a long term one from now.
Dr._WHO
Thank you for your input! Wishing you the strength to fight this. I'm so glad to hear that even with the treatments you can still enjoy doing things you like. If you don't mind me asking- Did umyou folllow any special diet? Vegan, flourless, no sugar? Any Supplements?
I'm trying to see if I can fine tune an easier diet regimen for my father.
I would love any input on diet and supplements.
Thank you
🙂
Hoping for the best for your whole family. For diet I have stopped all dairy products- the hormones in dairy are a super food for prostate cancer. I have almost stopped all fast food and rarely eat out. I take 15 grams of modified citrus pectin a day (about $80/month from Amazon). It is supposed to prevent free cancer cells from bunching together. Because I am on two types of hormonal drugs, I take calcium citrate (absorbs better than calcium carbonate) and vitamin D3. Low bone mass is a concern. For that reason try to advoid coke. It contains phosphorus acid which can leach out calcium from the bones.
Good luck!
----Since 30% of your cancer does not produce PSA, was your PSA value always very low?
to Daddysdaughter,
Tell your parents to have a good time in Europe. Tell him to laugh as much as possible.
Good Luck and Good Health to your Dad and all his family and friends.
j-o-h-n Sunday 08/06/2017 12:19 PM EST
Thank you
Your father could have Lutetium -177 PSMA Therapy at one of 12 teaching hospitals in Germany. Its expensive at about US$7K per injection. Probably two required about 6 to 8 weeks apart. My brother had two such injections in Sydney, Australia and his 30+ mets have all gone (except one small spot on a rib). In the USA there are two clinical trials that are recruiting patients.
A little more details in my Newsletter #6 on my web site at anabcofprostatecancer.com.au. Newsletter #7 due out shortly which will go into a lot more detail.
Note that PSMA therapy does not work on about 10% of men. Hope this helps.
I'm
Very interested in purchasing your books 2nd addition. Is it not available on iBooks?
You can order my 2nd edition book as an eBook from Amazon. The 1st edition only is up on iBooks. My 2nd edition book has many pages on diet.
As far as Lutetium PMSA Therapy is concerned, my brother's PSA continues to drop. From 9.9 before the therapy to 6.4 after 1st injection, 1.47 after 2nd injection and this week 1.24. All this with no real side effect, although the blood count has to be monitored. My understanding that the German protocol requires the patient to remain in hospital due to their radiation for 2 or 3 days after each injection. (This is not required in Australia as long as you isolated yourself for two days - no one within 2 metres).
I had a look there yesterday. The interesting thing is they seem to be based at Weill Cornell Hospital who are recruiting for a dosage trial. I also see they refer to a test to see whether this treatment will work or not - they suggest 15% don't have the necessary receptors on their Cancer cells.
My brother's result "may" have been assisted by him taking Enzalutamide (Xtandi) and on a strict diet. There is no way of proving or disproving this aspect of his treatment. He is 76 by the way.
Also get hold of the UCLA PSMA Clinical trial people.
Keep me posted as to any decision you might make as regards PSMA therapy. You might want to check whether or not the Hope4Cancer clinic in Mexico is doing this treatment yet.
Hope the above helps.
I found it! Also is this the same that they are testing here in the USA? Where can I find out more about this treatment? The studies are difficult to understand as far as results. Would you know if anyone on this thread would have done it?
I will ask.
Since your so knowledgeable, would you mind if I Ask a few questions? Maybe you can lead me to the right direction or website. I would like to know more about supplements and diet. I'm not looking for holistic healing just the basics to help decrease spread till my father returns from his trip. Trying to completely restrict him and make him vegan is difficult. So how bad is it if he has a piece of dark chocolate or has some organic beef or chicken 1-2x .. or has a dessert.. I'm sure it's not detrimental but at the same time it's not the best idea since he is only on lupron till he returns and begins treatment.. what do you think I should do about eating and diet? Any onsite would be appreciated!
Than you
First, viva Europa! Take that trip. Sounds wonderful. No pain,,that's great.Take advantage of that. A father is blessed with such caring children as you and your sister. There is no minimizing the gravity of his status..but don't follow the stats. , love him. That's what he needs. Any organic macha tea is good. God bless you all.
I found it available but not single strength. I will look into it. It's sold by a AC filter company on Amazon- I thought that was strange?
Thank you so much Lulu700, I appreciate all the support and encouragement! I've got him on 2 different green teas, matcha (iced in ready to go packs) high potency green tea blend for hot tea.. plus green tea tablets.. trying the best to keep the spread low during his trip!!
I will go an read up On it now. I just ordered the book on Amazon. There is a study apparently with something similar here in the US. I'm just learning about all these different treatment options. My father is going to see his oncologist tomorrow so I will recommend this test. I am not sure if it's available here in California at USC Keck. Wishing you good health and luck on your journey as well.
The US study is at Weill Cornell Medicine in NYC. The blog post gives a link.
Joel
Hi: I just want to let you know I consulted with people at UCLA (a doctor from Munich) and he told me the following:,
"Lu 177 PSMA is not a good option for neuro endocrine prostate cancer as this type of cancer usually does not respond well to this treatment. It does not have the target that we need to get in the radiation."
My assumption that because the NEPC is castration resistant could be a candidate for the therapy was wrong. This cancer does not express PSA and/or PSMA so it can not be treated with this therapy.
Anything, please let me know
Best
Raul
Raul thank you for asking and taking the time to research for my father. I think For now we will just see what the chemo will do. I’m crossing my fingers and praying That he will respond to it. I have read some studies that say the response is good but usually does not last a very long time. We will take whatever we can get.
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