my journey: Hi from down under, I am... - Advanced Prostate...

Advanced Prostate Cancer
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my journey

Hi from down under,

I am 69 diagnosed Oct 2002 age54 went to Doc for cholesterol ended up with a PSA test PSA 54 Gleeson of 9, went right over my head, given androcur until I could have turp. Have had radiation, tried zolodex then 20 treatments docetaxel then 68 treatments cabazitaxel chemo ended 1yr ago.numerous viscious side effects. currently on elligard and denosumab feeling great, little tired on elligard. PSA has been as high as 600 and recently 10, is now 54.doubling every 3mts. recent bone and ct scan unremarkable. Still have prostate. No bone pain. Amazing journey. will try enzalutamide when things get out of hand. also have in mind lutetium 177 which I will have to pay for.

Izab

Izab

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Thanks for your post it’s uplifting to hear your story as I too went for a simple chloestoral test this year at 47 and then realised I had Gleason 9 cancer with lymph spread. The fact you have battled this disease and are still fighting with such positivity is amazing. A real inspirational peice thank you! 👍

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Izab, that is an amazing story, You say you had 20 docetaxol and 68 cabazitaxel, that is a lot of chemo! It is inspiring that you are still fighting after all these years. I wonder why you would not do xtandi now to keep it from getting out of control. I have heard a lot of good things on here about LU177. I wish you the best.

Dan

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Thanks, Izab, for a very encouraging post. May you continue in success.

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Welcome from another Aussie. My story is similar - went to Dr to get checked out for coeliac disease in Dec 2014 (at age 52), not only did I discover that I had coeliac disease but I found out that I had elevated PSA which has quickly lead to surfery, IMRT, ADT and now advanced PC. I admire your courage and determination, I hope that I can last as long as you. Keep it up!

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Thanks you have a great story which is encouraging to see

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20 treatments with Docetaxel seems a lot .. I am due to start a program of 6 treatments (one every 3 weeks). What were your side effects and what did you do to counter them?

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the protocol was 10 treatments to start off for which I got 19months benefit. then I repeated another 10 treatments for which I got 9 months benefit. Three weekly intervals. side effects were nausea and tiredness. I used anti-nausea medication. I can't remember which ones though. Had nanna naps in the afternoons. Best of luck.

izab

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Izab. Keep hanging in there. My brother had an excellent outcome with Lu177 with Dr Renzo from Thernostics Australia. All his many mets have gone and his PSA down to 0.5 some three months after his second injection. Its expensive, but what's A$20K if it clears the disease.

Of course, Lu 177 doesn't work with about 10 -15% of men. I understand a genetic test is being developed to determine those men that Lu177 won't help. See my ProstateTalk newsletter at anabcofprostatecancer.com.au.

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Hi Allan,

Men who have lu177 have only a 25% success. Its good for some but for a lot there is little gain for a big expense. My friend Tom died soon after his second Injection.

izab

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What a way of living eh lzab ? I read your back posts. You’ve been thur some hell sir. How are doing today?

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Thank you for caring Lulu I appreciate your post.

Well I have been through some rough times.

In the last two months I have been in hospital twice with infection.

The first time was for chest infection Christmas eve for two days.

The second time was five weeks ago. I had a serious UTI MRSA (golden staff infection) could have died, and was in hospital for a week on two IV antibiotics of last resort. Stepped down to a little known oral antibiotic (Pristinamycin) four weeks. Had wee test on weekend and will know tomorrow if I am rid of the pesky bugs. I believe having a catheter contributed .Its now out thank the Lord. Couldn't stand having it in any longer. also worsened my urinary continence. My wee runs like a tap. Given up on the Urologist and seeing a men's exercise physiotherapist this week.

After having a couple of years remission from cabazitaxel. PSA sneeked up to 250 so started cabazitaxel to see what would happen. Got to four treatments and that's when the fun started. My immune system was shot hence the infection. I can't have anymore chemo. Currently on ADT only. Looking at a trial in Melbourne for Immunotherapy. Have to sign off now. Going to my local support group. Have lots to report.

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I heard my urologist once say , “ infections, infections, infections”. I had constant UT infections for more than a year and a half. Every time a new foley was in 3 days later a uti. Also tubes out of back . Then finally stents for six months . They were colonized immediately after each changing. The only antibiotic that still worked on my uti’s was Bactrim.. Cipro and the rest had no effect..anymore.. All of this had a deteriorating effect on my immunity and gave me muscle and joint pain..ten years ago or so I had a staff infection inside a knee joint . Very scary . These little bugs can easily kill us ..Many people including me fear hospital infections . I’m glad that you’re out . Hope the golden is gone . That’s super scarey . I pray for good news for you .. Please let me know that the Mrsa is gone . It sounded crazy to me but others have had a valve put in . These urological issues are brutal suffering....sorry that your foot is caught in the trap right now. Beating that infection is big time brother. Scott

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Hey Lulu,

I have the all clear. my wee test is perfect, no more infection. The Pristinamycin was very specific. Just have to pay the credit card now. Its not on pbs although Health fund paid for some. lots of friends praying for me.

Its final. Cant get on the Immunotherapy trial unless I reside in Melbourne which is 2500 miles from home. Also oncologist says he doesn't approve because I wont have local support. I need his help which is not forthcoming. This leaves me with no treatment.

Kind regards, Izab

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Ooohhh yaaahh! The Prostinamycin worked...against mrsa.... I will remember that name... No treatment for you.. that is pure BS... wh6 can’t you got for treatment then return?? I’m nieve ..don’t know you citation. It would be like me going to NY from AZ . You have made my day today telling me no more dammed Mrsa.. keep truckin good man I’m praying for you ... good things.. I’m in the back of the same boat . I just paddling and trying to stay afloat.. I appreciate you IZab .. God Bless and thanks for beating Mrsa.. These strong antis have there own saving and destructive powers . Of which you’re well aware of . We have to try and rebuild some immunity . Might include staying away form anyone with bugs. From the other side of the world I wish you peace and improved conditions.. Scott in Az🌵

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