Advanced Prostate Cancer
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Recently Diagnosed advanced cancer with lymph nodes positive in the chest, PSA 38 Gleason 9

Hi All

It's been quite the journey finding out I have advanced prostate cancer at 48. I'm currently on standard hormone treatment and am paying for Zytiga from the start of treatment as it is unavailable in the UK (you can have it but it's not available without a private prescription) despite the successful trial studies done. I'm lucky to have a positive outlook but I would like to connect with some fellow advanced cancer sufferers to maybe hear some positive stories as even my best efforts are challenged when the doctors give such bad outlooks. All positive stories would be gratefully appreciated! 😀

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Welcome to the group, It is a good one with lots of information.

I was dxed at age 49 , bpsa 148,GS (5,5) 10, in 2006, I am 61 now. I want to say as others will give details that in cases of high risk APC , they are giving early docetaxol chemo 6 rounds, from what I have seen in men who posted thier stats recently is that in many cases it sends the psa to undetectable , which is a favorable result in regards to extended survival, There was an American study with good results that has made this Standard of Care over here. 6 rounds of chemo was tolerated well with proper premeds and mitagating the side effects. How much are you paying for zytiga in the UK? did the adt+ Zytiga send psa into undetectable range? Others will respond. II wish you the best. learn all you can. Knowledge is power.

Dan

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They were shocked at how quickly my PSA dropped to undetectable. It's three months since combined Zytiga and hormone therapy and apart from extreme fatigue and flushes sometimes I'm doing ok. The Zytiga costs £1960 pounds per month! We are hoping it's passed through legislation soon so it's becomes free. It's already used here for men who's hormone therapy stops working but now it's given at the start if you can pay. Thanks for your support this can feel lonely sometimes!

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We are all here for you, and will help in any way we can. It is such a good indicator that you had such a complete response to undetectable, That alone means you will be a great responder. My hope would be that it will last many many years. It is surprising they do not allow zytiga , as I believe it was invented and put to trial at Royal Marsden in Londen. You have many options left in future and hopefully they will have a cure soon. I wonder if they pay for genetic testing in the UK, this is one of the latest thing in cancer, to test for mutations , as every one of our Cancers are different, and use targeted medicine. I will always answer here , or you can private message if you like.

Dan

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I was ask to give samples of my biopsy for genetic testing in the UK i said yes as it may help for better treatments down the road.

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Please keep in touch as you've really inspired me!

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Where are you Apollo? I was dxd Incurable Metastatic PCA Oct 2014. Gleason 4+5 12 cores all cancer positive and some 40 bone mets. Lymphs in pelvic girdle gone with the wind. PSA was 167 within 3 weeks 200. Now 0.03 and for past 12 months. Zoladex start Jan 2015, Chemo from Dec 2015 x 10 cycles with 5 months break then Zytiga. Still on hormone plus Zytiga. London. NHS. I am good, you will soon be.

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Hi I am in Porthcawl. My oncologist offered me Zytiga from day one combined with my hormone injection as an alternative to chemo, it's been trailed with great success but it comes at a cost as it has not been passed through legislation to be used as a primary treatment.

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Welcome to the group that no one wants to join but where they will find the best people around. So sorry that you were diagnosed so young and that it is advanced. Please know this, this sight is full of men that were told there cases are advanced, but they are still here enjoying life. I was quite depressed when they first told me I had cancer, but then the great men on this sight helped me with advice and support.

Could you please share a bit more about your cancer?

For example, I was diagnosed at 58 with advanced Ductal Prostate cancer. It is a very rare form that is usually quite aggressive. My biopsy was 4+4. Scans showed that it migrated to the pelvic lymph nodes but not to the bones. I had surgery about 19 months ago. Had to argue with the surgeon as he did not want to operate as it already had spread. Be prepared to argue with your cancer team. The pathology report showed that it was T3N1 where 30% of it stained negative for PSA. I had 38 rounds of radiation, Lupron with Zytiga added to the mix a couple of months ago. That said, I am enjoying life. While I am still wearing pads, I go on long bike rides, scuba dive and generally just enjoy life. I am hoping for the same for you. Just remember despite what the doctors say there is still real cause for hope.

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Hi I was diagnosed with positive lymph spread around the chest area with no bone mets or organ involvement. My PSA is now undetectable and they were astounded by the speed in which is dropped! They will not operate or give me radiotherapy as the PET scan showed multiple lymph involvement so it was impossible to do radiotherapy on all the nodes. I had a biopsy on the main lymph in the chest area which tested positive. My biopsy on the prostate itself came back as 9 so it is agressive. My options were chemo and hormone but instead as a result of the stampede trial results I was put on hormone and zytiga from day one. It's a blow but we are staying positive, I am very fit and healthy, the fatigue is awful but it's not everyday. Thanks for positive message.

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Thank you for the update. I wish the U.K. would cover Zytiga as most of the studies where done there. As you probably know the results from the Stampede trial were outstanding. In case you did not have read about it listed below is an article covering the trial.

nejm.org/doi/full/10.1056/N...

Hopefully it will keep the cancer at bay for many years and decades. By going the route you are if needed, you still have chemo in your arsenal.

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Hi Dr Who. I have had Zytiga for a year in sunny London on the NHS. Widely available here no probs. We call it Abiraterone Acetate, NY confuse some patients but same product. For me PSA now only detectable on latest machines at 0.03 down from zenith of 200. Keep going. Keep helping

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Hi I'm in Wales and you can only have it when cancer becomes hormone resistant not at point of initial diagnosis. Have you been on it from the start of diagnosis? The only men I know on it from day 1 of treatment were included in the stampede trial.

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Hi Scruffybut1.

I'm in the UK on NHS in the northwest and I was diagnosed 12 months ago with stage 4 PCa. Mets in pelvic lymph and on pelvis bone plus other suspicious areas in femor and spine. I'm on a 3 month hormone injection and went through 6 cycles of chemo. I asked about abiraterone at my last consultation but was told it's not standard treatment until later when other treatments stop working. Have you been through the chemo and are now on hormone injection plus abiraterone? I'm interested to know if you are because I asked about this combination after the trial results in June but was told there is no evidence it will improve my situation.

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My oncologist gave me the option between chemo and ZYtiga, I opted for ZYtiga as my initial treatment within 2 months my PSA is undectable, I asked what my oncologist would choose and he said ZYtiga but it's not paid for by the NHS as it hasn't been passed through NICE and all relevant governing bodies. I'm feeling great but it makes you very tired and fatiqued.

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I've had three separate doctors tell me they do not recommend Zytiga for me after I did early chemo until I am castrate resistant.

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I'm just on zoladex but not castrate resistant CRPCa. NHS will fund Abiraterone when I reach CRPCa, and if I was about to start Zoladex, but not as I've been on it for a while. Basically they won't fund a small trial. I wondered about paying privately like Apollo123 but didn't take the step.

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So if doctors say can we still remove prostate?

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Of course it is up to you, but it should at least be a discussion point.

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Actually my father is 65 and Gleason score is 9 and spread till lymphnodes removed testicles in Aug since then on Zytiga plus calcium now MRI scan is showing shrink and nothing in lymphnodes doctors are scheduling 40 sessions of radiation saying it's good time for it as report is clear and good but still they will cover big area for radiation - pelvis and lymph nodes area as it was spread till there plus when my father asked to remove prostate they said now of no use then why should they remove..

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PSA in July was 38 and now is 0.1

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My positive story: I'm alive and well! 6 months post diagnosis with prostate cancer starting with a raging PSA of 463 and ALP off the rails at 605. Had a bone scan with more lights than a Christmas tree and opiate level pain causing me to come home from a business trip in a wheelchair.

My PSA immediately starting dropping in the first month after starting ADT. It went down to 12 the first month, then below 1 after. Pain was completely gone after one month. Started 6 rounds of Docetaxel chemo after one month and PSA continued down to .19 where it is now. Go in for my third Lupron shot tomorrow.

I'm still recovering from the side effects of chemo, but I'm almost completely over it. Walking 2 miles a day and doing pretty much everything I want to do. Having some hot flashes, but that's a small price to pay for another chance at life.

Most prostate cancer is like mine, very treatable even at stage 4. I feel very lucky to be here writing this.

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Sorry to hear about your Dx. I was dx in 2013, GS 9(4+5) no detectable mets. Went on ADT and an 8 week course of radiation. In April of 2015 I went off ADT And all was well until about 16 months ago months when my PSA started rising so back on ADT scans showed no mets. Early this year my PSA started rising again, I was castrate resistant, scans showed several bone mets and I went on Zytiga and Xgeva to strengthen my bones. For now my cancer is in check and throughout all this I've been asymptomatic aside from fatigue brought on by the ADT treatment. I hope to get a few years out of the Zytiga and there are other second line treatment options after it fails. You'll find many of the participants here have lived with advanced PCa for many years.

Best of luck my friend.

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Thank you so much for your response it means a great deal to speak to other men who understand.

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Hello,

Hope you have already begun to tap into some of the resources at Prostate Cancer UK.

prostatecanceruk.org/

Here's an overview of my story. I think it has some positive aspects.

Dx Nov 2013 Metastatic Prostate Cancer at Age 65

Numerous Bone Mets and Lymph Nodes, PSA 5,006

ADT Lupron + Zometa, PSA Nadir 1.0

Resistance after two years.

Short rechallenge Casodex.

Oct 2016 Provenge

Dec 2016 Start Xtandi, PSA 95

Jul 2017 PSA 1.5

Charles

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XTANDI worked great for me, by lowering PSA. But then it stopped working after 2 years. Tried ZYTIGA for 3 months, didn't work. Stopped it. Now doing the PROVENGE immunotherapy treatment. Everybody responds differently.

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I know of at least 4 Stage 4 fighters still alive and kicking. There is hope. There are probably more, who I don,t know personally who are members of this forum. Good doctors, gooe drugs, and learn all you can, and be a part of your medical team.

Rich

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Its late, I mean,t to say I know 4 who are 19+ years who are still alive and kicking.

Rich

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Thanks Rich just what I needed to hear!!! I think positive mental attitude is vital.

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I was diagnosed with Gleason 8 at age 55 in 1999. I was told at that time after prostatectomy I had a 48% chance of living 5 years. You can see my entire 18 years of cancer treatment history in my profile. With prompt treatment you probably have many more years to live. Good luck! Remember it's not the years in your life that matter, it's the life in your years. Live it!

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When I was diagnosed nearly three years ago, my psa was 850, three bone mets and so many lymph nodes infected that they quit counting them. They simply told me that I had "numerous" lymph node involvement in my chest and abdominal area. Fast forward to today, scans last month showed all lymph nodes normal and psa undetectable. I exercise daily and follow a very strict diet. Some men here say that diet doesn't matter. I honor their opinions but respectfully disagree. Educate yourself and make your own determinations regarding exercise and diet.Finally, don't freak out and overload your mind with countless data. You have a very, very long way to go. Relax, de- stress, and enjoy your life, your not going anywhere for quite a long time.

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nameless

I for one am a believer in a good diet and exercise. When you get a chance can you send me your protocol. I have just started a pescatarian diet a couple months ago, my wife is from india originally so we are eating alot of indian vegetarian dishes with plenty of turmeric and other spices. I was diagnosed as a T1c psa 4 gleeson 6 9 out 13 had cancer most of them are 5 percent or less 1 core was 10 percent or less and 1 with 80 percent but my bone scan showed a small suspicious spot on my rib cage all other scans are clear. Northwestern said they would just consider the spot on my rib cage as a normal lesion, could be injury etc. I went to Mayo to review what options they had to treat my PC and the Oncologist told me he recommends doing a biopsy of my rib cage just to rule out PCa. So I will have a biopsy this coming Tuesday. He said if the biopsy comes back negative then he would choose seeds because it can give off a high amount of radiation and it has a good track record. If it does come back positve he said IMRT for the prostate, seeds and they would zap the rib cage and prescribe ADT. He told me in his experience there is a 5 - 10 chance it could be cancer in my rib cage but when I read the info on yanonw the information said it is about a 1 percent chance. One thing I am learning about PC is this can be a very unpredictable journey so this is why I am asking you questions because you seem to have alot of knowledge. Thanks in advance and have a Happy Thanksgiving.

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Hi I follow an organic diet and do the following as extras

B17 apricot kernels must be taken with pineapple enzyme

Essiac tea

CBD extract with no THC

Curcumin

Various mushroom supplements

Drink high quality pomegranate juice

Vitamin C

Magnesium

Immunecol platinum which definitely helps with the side effects of hormone therapy without this I feel tired and flush

Lots of exercise and weight bearing to try and keep muscles strong

Lots of green veg organic

Limit dairy

Limit sugar

Only organic meat

No alcohol it makes me feel ill both physically and mentally if I over indulge.

Try to stay positive it’s the biggest battle. There are many men on here who inspire me with their journeys some who have well exceeding all expectations put on them 16+ years still going strong.

It sounds a difficult regime but it becomes easy to follow and I do occasionally enjoy myself on a meal out and eat whatever I feel like on these occasions.

I am maintaining a good life and when you get over the initial shock and panic it becomes normal life. I can’t fight reality and I don’t try to.

We email various specialists from all over the world to ask for advice on new treatments and they are very open to answering questions we have.

Please keep in touch and let me know how it all goes.

Anthony

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Hi thanks for your information I too am an advocate of healthy foods, can you explain what diet you follow and if your on ADT therapy. Thanks

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I eat 100% plant based foods. I stay away from refined flour, foods high in omega 6, zero sugar of all types, no fried foods, most all my food is lightly steamed. I run four days a week (4-5 miles) and lift the other three.

I followed the chaarted trial which consists of early Docetaxel combined with Lupron. I have yet to advance to Zytiga. My psa is currently 0.07 which many cancer centers consider undetectable.

Whatever you do DON'T research life expectancy charts. I found one that said I had 3 years, one said 5, other said nearly 7. I plan on at least 10. You're not going to drop dead in two years, just remember one thing. Your life is different now, adapt. Now continue on with your adapted life.

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Hey Apollo, I was diagnosed last year age 49. I can understand the emotions you're going through. I live in Perth, but I was born in the UK (Northamptonshire) and came to Australia as a 5 year old. I've recently finished Docetaxel chemo and feel great. I've been on 3monthly Zoladex implants. My PSA is currently low (under 1) and stable. I also had cryo-immunotherapy, twice in the USA, but didn't seem to respond to that. I spent a good year fearful and worried about dying and leaving my young kids without a father, but I don't think like that anymore, I will face any challenge that this thing throws at me and if it brings me down, I will go down fighting. I am still working full-time and have no plans to change that. I enjoy life more now than I did before diagnosis, I don't let the small things get me down. I wish you great success in your journey and I hope you (and the rest of us) stay alive until they crack the code, because I am convinced they will one day. Cheers Paul.

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Hi Paul

Don't mind me asking

How did you find out that you had the illness ?

Thanks

Ant

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Hey Ant, lots of issues with urination, plus I had leg pain, which turned out to be a lesion in my left femur.

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Hi Paul

I had issues with urination at nights,also pain in lower left back shooting pains in pelvis.

Urination has stopped at night no more pain anywhere

Changed the subject are you experiencing body changes i.e. Boobs backside

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I've developed boobs, but only barely. No other changes to speak of.

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Hi Paul

Lovely story it's nice to have someone in the same situation (not in a sick way 😂)

Yes I have 4 children all boys youngest being 4 so there is no way that I am going anywhere soon.

The day they told me it wasn't the best but as the weeks and months roll on it gets better.

I am taken other natural medicines as well as the Zoladex and Zytiga and I am feeling great

If you are intrested in them please let me know they may help you.

Prior to me getting diagnosis I was cycling approx 150 miles per week training 3 times in gym.

I am convinced it was the bike that kick all of this off I used to push my self to the limit until nothing left in tank😬So my immune system was left open to the Fungus....

Now I am pain free no aches my immune system is 100% on top

Just get the odd day where I feel a little tired if that is all I've got to deal with so be it.....

Take care

Ant

Ps

Just had another psa. 0.01👍

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Good stuff Ant. My PSA never got that low (0.2 was my nadir). I'm post-chemo and feel great. I'm going to the gym 3 times a week, but I do get a bit fatigued. Keep kicking it!

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Hi

I live in Bristol but am from Cowbridge and I am frequently back there to visit my mother. As Porthcawl is conveniently located maybe you would like to start a dialogue.

At the age of 62 (Sept 2016) I was diagnosed with metastatic cancer Gleason 9. A choline PET scan showed disease in the prostate and pelvic lymph nodes and also in the bones of the pelvis and T7 and T11 vertebra.

The treatment was hormone injections and 6 cycles of docetaxel chemotherapy. The result of the treatment was that the PSA had dropped to 0.412 from 18.6 and a new PET scan showed that there had probably been a complete metabolic response.

Recently my PSA has increased from 0.412 since March of this year to 2.01 this month. I am having a further PET scan this evening to see if there is any increased activity. If there is I may have a short cycle of radiotherapy and also may be put on Enzalutamide (Xtandi).

My consultant Dr Bahl has not mentioned Zytiga until I mentioned this to him yesterday. I think his opinion is that this should be left as a last resort to fight the disease if necessary.

I am relatively fit and apart from hot flushes resulting from the hormone therapy and a slight numbness in my foot first thing in the morning I feel ok. Mentally I get down occasionally but always pull my self together by keeping active. I still play golf and last week walked up Snowdon.

I run my own business and am still working but at a reduced pace which is through choice and nothing to do with the cancer.

I really don't know much about Zytiga and costs but I will bring the topic up with my consultant when I see him.

It would be good to hear from you.

David

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Hi David it would be great to talk particularly as you are so close let me know when your around Porthcawl and we can have a coffee. The ZYtiga has always been used as a treatment when normal ADT stops being effective however results from the stampede trial showed that it could be used as a first response drug used with ADT if chemo had not already been given. As you have already had chemo it will now be used at a later stage if you ever need it. You sound like your doing well and more and more options are opening up all the time to us all. It's a hard diagnosis and like yourself my cancer had spread to the lymph system in the chest and pelvis area . I recently met a man called Keith Cass who runs the red sock charity who has lived with the same diagnosis as ours for 11 years and he still looks great. The tiredness is overwhelming sometimes and it harder to keep up with my 4 sons but we manage. Staying mentally positive is the challenge! I too own my own business but it keeps me busy and on task. Look forward to meeting you.

Anthony

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Hi Anthony

You may have received this reply before, I pressed the wrong button.

Next week would suit me as I have to be in Cowbridge. I am available Monday, Wednesday or Thursday. I will leave where to meet up to you.

My email is dm.thomas@btinternet.com

It would be really good to catch up and chat to somebody in a similar situation.

David

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Hi Anthony

I trust all is going to plan. I had a scan a couple of weeks ago and the results were good apart from a small activity in the T12 vertebra. Dr Bahl is putting me on Xtandi for hopefully a short period of time. My next review is in mid December. How are you doing and do you still want to chat or meet up for a coffee. David

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It would be great to meet up I will email you directly. Look forward to a coffee.

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