Advanced prostate cancer recurrence

[Nuray]

Hi every one,starting external Radiothereapy therapy?currently my PSA reading is 0.13 considered low?but want to atack the Cancer with aggressive treatment after Radiothereapy?read few post on here where guys went all out to have aggressive cancer treatment to atack the Cancer folks?would love to hear from more experienced folks on this forum?and input would be greatful?as my Onc doctor at Barts London likes to take step at time?why wait for cancer to spread then have the pain of fighting harder fight all togather??

[JoelT]

fr your post one can guess that you have had surgery which has now failed. Is this correct?

What was your Gleason grade?

Joel

[Nuray in reply to JoelT]

Hi JoelT my PSA reading before surgery was 15.1 Gleason was 3+4 ?biopsy results positive margins seminal invasion? That was may 2015

[podsart]

Hi- suggest multiple med blockade rather than taking one at time. A number docs recommend that, including dr Myers , see his long term durable remission presentation

Good luck

[Nuray]

Hi podsart ,what you mean multiple med block Hormone injection ?? Sorry new on here?

[Break60 in reply to Nuray]

Multiple blockade includes Lupron , casodex and avodart

[podsart in reply to Nuray]

Hi- I am on Xtandi, metformin, avodart, and Celebrex and certain supplements ( to try to remove methylation silencing of my PTEN gene)

Other additions could be lupron and leukine and/or immune therapy depending on conditions

Suggest Chk your vitamin d levels at normal levels

Also make sure your cholesterol is low especially small partical ldl

Also see if clan gwt your DHT to 4 or lower, avodart helps here

[DonUSNA73]

Hi Nuray,

Mine was similar to yours though a little worse at 4+3 and 20psa. About 2 months after my surgery and biopsy (positive for margin & SVI) I started firmagon + zytiga therapy (for 18 months) followed a month later by radiation. Trying to be aggressive. Also changed diet and started taking a number of supplements such as curcumin. Have been off all prescription meds now for about a year. So far so good in terms of undetectable PSA + slow return of testosterone...good luck on the journey.

Don

[Nuray]

Thank you Don,for your input mate,think you guys in the states have better Onc who understand cancer treatment better then our Onc here is London ?

[Hidden in reply to Nuray]

It's not just the doctors Nuray. Like Don stated do all the good things you can to improve everything.

[Nuray in reply to Hidden]

Thank you lulu for your kind input🙏Aim doing every thing in my power diet has changed to veggie and doing loads of walking and very greatful to every one on this forum👍That's giving there honest opinions?my On doctor at Barts London takes things to sutile for my liking?not got much confidence in her to be honest?I told her to give me hormone injections while waiting for Radiothereapy planing?from the start of my cancer journey all through the NHS system I feel they all let me down?when I first got diognosed with cancer saw top Onc at Barts London?as I had 4 cores positive?one core on Edge of the prostate?they all assured me it's nothing to worry about it's a slow growing cancer?while I tried pledging with the top consultant at Barts London they all assured me my prostate cancer was confined in the prostate bed?made me wait another three months and had the operation?few weeks later my biopsy results came in positive margins posteri and seminal vessel invasion?tell me who can you trust? When your health lies in they hands?so know I'm insisting what I see fit for my body needs to control or eradicate this cancer lulu

[Hidden in reply to Nuray]

Yes they can miss things or misinterpret scans..Put your life back in your hands.Impower your self by using some alternative natural fixes and insist on researching what's best for you..Pump up your immunity.Take good care..You need med Drs but do your own thing to help yourself..Positive people and thinking are your best friends?Its easy to be unhappy with docs with treatment or in general everything looks immense to you right now.I can tell that you are smart.Keep faith in your self..You will do well!!You might have to try things that you never even considered.if you aonly put in 50% you'll fit into some dismal results.Dont fight with yourself.Making decisions is the hard part.You will make the right choices..Keep at it.,.

[Hidden in reply to Nuray]

That wait time probably wasn't the best for you.But sounds like you won't let that happen again.I also waited 6 wks for a biopsy under a urologist care until I ended up,in the E. R. In kidney failure..I didn't think that should have been allowed to happen to me.I was furious at that moment and thought about mal practice..But I had to fight for me life and let it go in able to do so ..Later when my results turned good the urologist institute told me they changed their policy to get a quicker biopsy for super advanced conditions..So maybe that won't happen to someone else.Medical mistakes are one of the leading causes of death.

[Nuray in reply to Hidden]

Yes lulu,no one can be naive towards cancer lulu?im trying every thing eating healthy drinking juices made fresh no fruit juices as they carry to much sugar?carrot with fresh turmic roots which are orange in colour a touch of ginger is quite nice?lovely chatting stay in touch Nuray

[Hidden in reply to Nuray]

Fresh ginger ,garlic turmeric, all these and many more all used for centuries. Ezicial bread,hawthorn tea and high grade manuka honey.Organic is spreading quickly.Keep the faith!!

[Hidden in reply to Nuray]

Re: "biopsy results came in positive margins posteri and seminal vessel invasion?tell me who can you trust when your health lies in they hands?"

It doesn't have to. In fact I do my best NOT to trust doctors with my health, certainly not fully or blindly. I took charge of my own treatments years ago following countless hours of personal study after far too many physicians bungled their assigned tasks of helping me. I now use physicians for guidance ... just one more input like those from many other sources. No guarantees whether it will prolong my life or raise my QOL (well, not true; it has already steered me away from mainstream treatments that every oncologist insisted upon and were later proved wrong IN MY CASE ... and in many cases across the board), but it already has boosted and will likely again boost my confidence that I've done the best I can in choosing doctors and treatments.

Almost none of them knows CRAP about nutrition, diet, or exercise; few know (or tell us) enough about side effects to make informed decisions; and the vast majority -- damned near all of them -- push drugs when in many cases free, simple, safe, simple-to-stop lifestyle changes will do better than their stupid drugs without the SEs. I've done that even with surgeries pushed by sports orthopedists, and in multiple cases avoided major errors.

Yet I can't seem to motivate people to read. I've taken two or three books I highly recommend to real live cancer forums (I no longer bother), I've given some to people (no mas), but people prefer whatever else they do over improving their very lives, often dramatically, if the latter involves a bit of effort. I don't understand that. Fortunately, it's not my problem.

[herb1]

Nuray, historically, the protocol would be external radiation to the prostate bed and pelvis, but that has recently been changed to XBRT AFTER 6-12 months of Lupron. (Don't know if Casodex/Avodart has been demonstrated to help in this scenario.) I'm sure someone is going to suggest scans, but at a psa of 0.13 ng/ml, it's unlikely that they'll find anything.

herb s

[Nuray in reply to herb1]

Thank you Herbs for you opinion regarding my sisuation?yes my PSA is low my Onc here at Barts only suggested external Radiothereapy to the prostate bed?I asked her to give me Hormone injection?while I wait fir my Radiothereapy planing?Ive had my first Prostap injection last month this month on the 9 I be having my second jab?not sure which direction to go with this dreaded Cancer??

[herb1 in reply to Nuray]

Nuray, Sounds like your onc is moving in the "approved" direction. He's giving you the Lupron (different name: prostap). He's giving you a 1-mo shot, which is wise in that you can stop if side effects are bad (they shouldn't be); there's also some anecdotal info that the 1 mo shot is slightly more effective than the longer term ones. YOu might want to ask him/her about Casodex and Avodart...and do your own research on-line. Good luck. You're not in bad shape. Keep your spirits AND your body up: good food, exercise, etc.

herb s

[Nuray in reply to herb1]

Thank herbs,yes one injection a month on Prostap?onnthe 5 this month planning session for Radiothereapy mate?my doctor at my surgery has also taken blood test for Psa to?will find out today if his reading and hospital reading are different?or near the same level of psa?read that first Prostap injection some time courses some Tumor flare up?this will obviously effect the psa reading? Nuray

[herb1 in reply to Nuray]

Nuray, A bit disappointed by your onc. A week or two of Casodex BEFORE the prostap could have prevented any testosterone (and Psa) flare. Too bad. You do need to explore with your doc the CONTINUOUS USE of Casodex and avodart (for Dihydrotestosterone, DHT management). Also, starting with a psa of 0.13 and now being on Prostap one month, your psa should be well below 0.1, which means the standard test will not be adequate, you really want the ultrasensitive...unless that's what you're already using. It isn't a big deal nor critical at this stage, however.

Herb s

[Hidden in reply to Nuray]

Don't dread! There is much you can do for yourself. You want to improve your conditions so that you get through this sooner than later. Keeping Hopefully is of major importance.If able exercise and get to nature..seams simplistic but. It works.

[Hidden]

You must have faith in your ono Dr. or find one you do trust..So many variables.If you give more of your details to this site there is someone reading here that has or is in the exact same place.They can help.Age,stage,Gleason,..Put That out then we can respond better..The treatment depends on your age,quality of life,and the aggressiveness of your type.

[Caring7]

We have a radiation oncologist that we really respect. We are only dealing with mets in my husband's case for radiation. (prostate is what it is because he was diagnosed at Stage IV). With bone mets, the consistent advice is to wait until the met-tumors are causing pain because (1) you can pretty much only radiate a spot once so make sure it's worth radiating (e.g. not just seen on a scan but causing pain); combined with (2) radiation kills bone marrow in the area, so, again, you want to make sure it's worth it.

That said - understand your frustration and feelings. We have gone to the RadOnc with exactly the question -- why not go after it all!?

My husband did get Xofigo (RA223), which is administered IV and is supposed to bind specifically with bone cancer sites, even little ones. He has a lot of small spots diffusely so we thought this was a good idea. We'll never know for sure but his scans are stable more than a year after Xofigo and he only made it through 4 of 6 recommended treatments. He also had one site-specific external beam treatment series (5x).

(Note -- Xofigo requires bone mets (I think 2 major at least?) but not visceral (no organs (liver, kidney, etc.) with metastasis). -- not sure where you are on that scale.

There are potential complications, I think, with radiation. At a support group, we heard a guy (mid-range Gleason) who went aggressive and got radiation and regretted it because he had urinary issues and diapers for two years. It's all a frustrating cost/benefit analysis.

[Nuray]

Hi caring7,firstly hope your lovely husband stays stabile,thank you for your kind input👍I'm currently on the verge of receiving Radiothereapy to the prostate bed?my current psa reading is 0.13 having my second Prostap injection today?current biopsy results T3a with positive margins spread?seminal invasion and extracapular at left side posterior?due to got for Radiothereapy this month on the 24 April ?not overly Confident at Barts hospital in Saint Paul's?want to get transferred to the Royal Marston in Chelsea they have top Cancer specialist there with far more experience and better out come results over all????