Glenn from mississauga ont canada wi... - Advanced Prostate...

Advanced Prostate Cancer

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Glenn from mississauga ont canada with advanced prostate cancer

glennporemba profile image
17 Replies

- 2011 bang advanced prostate cancer out of the blue at 54

- gleason 9.5   mets to hips and spine,  in lympnodes

- tried most things  zoledex, abiraterone (Zytiga®), Docetaxel (Taxotere®)

Cabazitaxel (Jevtana®), radium 223, Enzalutamide, xgeva,zometa,

- on my 3rd round of chemo   Docetaxel and Carbplatin 

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glennporemba
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Dr_WHO profile image
Dr_WHO

Wish you the best.  Keep fighting!

AlanLawrenson profile image
AlanLawrenson

I know of two men with similar stats to you, who have benefited from Budwig diet, particularly flaxseed oil and cottage cheese. Sounds unlikely, but check it out.

pjoshea13 profile image
pjoshea13 in reply to AlanLawrenson

Alan,

I'd be interested in knowing more about those two men who benefited from Budwig.

You may know that Dr Myers was so concerned about patients asking him about flaxseed, that he wrote a little book:

"amazon.com/Flaxseed-Panacea...

& there are well-known epidemiolgical studies that associate ALA [alpha linolenic acid] intake (any source) with aggressive PCa.  As you state, Budwig uses flaxseed oil, & this is due to its high ALA content.  ALA is a very unstable fatty acid (as Budwig herself knew).

As for cottage cheese, there are other well-known studies that associate dairy with aggressive PCa.

Some years ago I joined the (very large) Budwig group.  This because of coming across men claiming that Budwig worked.  One man swore that it worked, but wasn't using it even though his cancer was active.  Another said he was using it, but was merely taking the oil - something that Budwig warned against.  Another man had a PCa-Budwig site which omitted to say that he was on Lupron.  Budwig failed him when ADT failed.

Anyway, my idea was to find those who had been on Budwig at least 12 months.  Couldn't find anyone on the Budwig site.  That's why I'm interested in the two guys.  I'd like to hear their experiences.

-Patrick

glennporemba profile image
glennporemba in reply to pjoshea13

Hi Patrick  thanks for that reply,  I hope Alan can give some details on their experiences......  I really like to have see some good experiences before i try something new........  especially at my stage.  Have a great day .....Glenn

shockwaveseats profile image
shockwaveseats in reply to pjoshea13

This is a good comment. Stay away from hippies and KOOK therapies and listen to guys like Dr. Myers.

glennporemba profile image
glennporemba in reply to AlanLawrenson

Thanks for than Alan.  I always wondered about that diet if it was useful, but knowing real men got real results is encouraging I will re-check that diet again    Best    regards  Glenn

Glsn10 profile image
Glsn10

Hi Glenn,

Your not alone , I was diagnosed in 2013 at age 52. About to turn 55 in a few days but wonder if I'll have many more after this one. I won't retype my whole history but we seem to have had a similar journey.

How are you doing health/quality of life wise?

I haven't had as many treatments with chemo as you yet but I plan to when the need comes as long as they can keep my QOL decent.

I worry how long I can keep a descent QOL but try to keep In mind what my dad used to say " worrying never solved a problem and never paid a bill" .

I plug along and just try to enjoy what time I have.

I wish for you the same as I hope for all of us struggling with this horrible cancer a good QOL and the hope for some new treatment that can get us there.

Keep fighting!

glennporemba profile image
glennporemba in reply to Glsn10

Hi thanks for your reply......I would have a real descent QOL if I did not try and be Rafa Nadel playing tennis and cracked my hip bone socket right where my bone mets are  and now it will not heal so I am still on crutches after 10 months.  my arms are strong though LOL    I taking  opioids pain relievers for the bone met.   On long term disability right now and holding my own on round of chemo.   As I said  if i didn't break my hip my QOL would be really good as i have a good appetite and lots of energy..........   hey i plan to play golf this summer if I have to do it will a CANE!     Regards Glenn

Glsn10 profile image
Glsn10 in reply to glennporemba

A few months ago I fell out of bed and broke two ribs. Not quite as cool of a story as playing tennis and doing it.

I have mets in my ribs and they healed so hopefully your hip will also.

Not quite the life we would have envisioned but you have the right attitude. No matter what we are dealing with there is always someone that has it worst than we do.

Practice your serve and you won't have to run around as much!

Mohopes profile image
Mohopes in reply to glennporemba

Friend, you sound just like my dear husband who tried to play like Rafa up till 3 weeks before he went in the hospital for a biopsy and, sadly, came away with almost the same diagnosis as yours—Gleason 9-10, PSA 233, spread to bones and lymph nodes and lungs. He is 58. He has lost over 40 lbs since Oct. He’s on Lupron/Zytyga protocol but I have doubts it is working; he has increased horrible bone pain, fatigue, intermittent rectal bleeding, no appetite. My dream is that he gets well enough again to take the court, enjoy some QOL, even see Rafa win another major (maybe even overtake that cheater Federer in all-time wins.). Soldier on, my friend.

JoelT profile image
JoelT

Hang in brother.

Joel

Terje profile image
Terje

Hi Glenn!

I'm on a similar journey. Age 54 when diagnosed with Gleason 8 in 2008. 

I discovered that I have a BRCA2 gene mutation that runs in the family. Which would explain why I got PC so 'young'.

It is estimated that something like 25-30% of advanced PC patients have a BRCA mutation.

BRCA2 is associated with aggressive prostate cancer. However, if you read up on some recent research (f.ex. TOPARP) you will see that this gene mutation may have an Achilles heel.

I have been on Lynparza (olaparib) for just over a month now. Somehow my oncologist managed to push this through with my insurance company. It is FDA approved for ovarian cancer and it has received Breakthrough therapy designation for PC which means it will approved anytime soon. 

You can now get a BRCA1 and 2 test for around $250 (for both together). I totally think it is worth while to check it out!

Take care brother and the best of luck!

Kind regards

Terje Aaslid

Here is a cool story about veliparib (also a parp inhibitor like olaparib):

ncbi.nlm.nih.gov/pmc/articl...

Also Dr. Snuffy Myers had a chat about this not long ago:

askdrmyers.wordpress.com/    (5th video down)

glennporemba profile image
glennporemba in reply to Terje

Hi Terje    thanks for the reply  very interesting,   well my dad had prostate cancer but he was in late 70's  so i did not make the connection,  my loss,  thank you for the information i will check it out,  Sorry for  slow reponse as my chemo on friday is finally hitting me on the side effects of things and I am very wobbly ,  hope to back on feet by thursday,     best regards  Glenn

Terje profile image
Terje in reply to glennporemba

BRCA Test kit: getcolor.com/

BigRich profile image
BigRich in reply to Terje

Thank you for the links.

A member of the Reluctant Brotherhood,

Rich

Quite young. Slightly elevated chance it is BRCA2 mutation involved. If so, PARP inhibitor. Name is Olaparib. NCT02677038 and others.

Another trial that i think is exciting is NCT02478125 - Burixafor.

I hope to be enrolled. It's in Baltimore.

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