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Have I beaten PCa? Who knows?

User
Posted 10 Dec 2016 at 04:56
Good morning

Thought I'd jot down these thoughts and observations in the hope that they might help others through their difficult times.

Aged 55 I was first diagnosed with Stage 4 PCa at the beginning of September 2016 after having it confirmed with a PSA >1000, Bone scan, CT scan and an MRI scan. Up until this point I had no symptoms at all; no pain from the prostate and waterworks starting/stopping fine. It was a real shock as the pains in my hips, thighs, spine and lower ribs were incorrectly diagnosed as Vitamin D deficiency!

I was quickly started on five weeks of tablet hormone treatment after which my PSA dropped to 156. As my response was so positive I was then put on tri-monthly hormone injections and tri-weekly Docetaxel chemotherapy.

Just like everyone who hears the word 'chemotherapy' I was very apprehensive about what lay ahead especially given the extensive paperwork addressing the main, often debilitating, side effects. Thankfully a course of Dexamethasone pre/during/post chemo seemed to keep all the worst side effects at bay, but the pains in my hips and thighs increased to the point where I couldn't walk unaided and I developed a fever. After a blood test it was found that my white blood cell count was almost zero and I was given an injection to boost them; thankfully this very quickly resolved both problems.

My second round of chemo, again with the Dexamethasone side order, was less traumatic as I was given a prophylactic white blood cell injection twenty four hours afterwards and, apart the usual tiredness and fatigue, the side effects were negligible. My pre-chemo PSA was now 153. Not as dramatic a drop as previously but still moving in the right direction. The only downside to this chemo session was that I developed a very painful perianal abscess - think red hot mole grips on a very sensitive part - during the third week recovery period. As it was an area of potential infection my consultant was concerned enough to delay my next round of chemo for a week. During that week it seemed to start healing enough to continue with the next chemo session.

But on the day of this third chemo session the abscess started to weep again and was very painful, and mindful that it could have become a fistula, the chemo was again delayed. This was disappointing but there was a silver lining. My pre-chemo blood test showed that my PSA had now dropped to an incredible 0.417! We couldn't believe it; has the PCa been beaten into submission so quickly? My consultant was so pleased with this huge drop in PSA that my next chemo session has been delayed for three weeks in order to try and rectify my abscess/fistula problem. We are obviously over the moon at the results in such a short time, just over three months, and with minimal side effects.

I should add that all the brilliant medical in-put has been augmented by us with the following; which may or may not have played some part but certainly hasn't done any harm:

1. from day one of diagnosis we adopted a totally vegan diet

2. high intake of red/purple antioxidant foods - blueberries, red currants, red cabbage, red peppers, tomatoes etc.

3. lots of spinach and lentils for iron to support blood

4. daily supplement of Turmeric 450mg and Coriolus 300mg (also known as Trametes Versicolor/Turkey Tail).

Obviously can't say for certain if any or all of these help but as I said previously I'm sure they haven't done any harm!

So that's it to date. Obviously we're all very individual and each of us will react very differently to both conventional and alternative medical interventions. Hopefully these jottings can help others and maybe give you some ideas for 'self help'.

Wishing you all the best during your difficult journeys

Boyd

User
Posted 10 Dec 2016 at 04:56
Good morning

Thought I'd jot down these thoughts and observations in the hope that they might help others through their difficult times.

Aged 55 I was first diagnosed with Stage 4 PCa at the beginning of September 2016 after having it confirmed with a PSA >1000, Bone scan, CT scan and an MRI scan. Up until this point I had no symptoms at all; no pain from the prostate and waterworks starting/stopping fine. It was a real shock as the pains in my hips, thighs, spine and lower ribs were incorrectly diagnosed as Vitamin D deficiency!

I was quickly started on five weeks of tablet hormone treatment after which my PSA dropped to 156. As my response was so positive I was then put on tri-monthly hormone injections and tri-weekly Docetaxel chemotherapy.

Just like everyone who hears the word 'chemotherapy' I was very apprehensive about what lay ahead especially given the extensive paperwork addressing the main, often debilitating, side effects. Thankfully a course of Dexamethasone pre/during/post chemo seemed to keep all the worst side effects at bay, but the pains in my hips and thighs increased to the point where I couldn't walk unaided and I developed a fever. After a blood test it was found that my white blood cell count was almost zero and I was given an injection to boost them; thankfully this very quickly resolved both problems.

My second round of chemo, again with the Dexamethasone side order, was less traumatic as I was given a prophylactic white blood cell injection twenty four hours afterwards and, apart the usual tiredness and fatigue, the side effects were negligible. My pre-chemo PSA was now 153. Not as dramatic a drop as previously but still moving in the right direction. The only downside to this chemo session was that I developed a very painful perianal abscess - think red hot mole grips on a very sensitive part - during the third week recovery period. As it was an area of potential infection my consultant was concerned enough to delay my next round of chemo for a week. During that week it seemed to start healing enough to continue with the next chemo session.

But on the day of this third chemo session the abscess started to weep again and was very painful, and mindful that it could have become a fistula, the chemo was again delayed. This was disappointing but there was a silver lining. My pre-chemo blood test showed that my PSA had now dropped to an incredible 0.417! We couldn't believe it; has the PCa been beaten into submission so quickly? My consultant was so pleased with this huge drop in PSA that my next chemo session has been delayed for three weeks in order to try and rectify my abscess/fistula problem. We are obviously over the moon at the results in such a short time, just over three months, and with minimal side effects.

I should add that all the brilliant medical in-put has been augmented by us with the following; which may or may not have played some part but certainly hasn't done any harm:

1. from day one of diagnosis we adopted a totally vegan diet

2. high intake of red/purple antioxidant foods - blueberries, red currants, red cabbage, red peppers, tomatoes etc.

3. lots of spinach and lentils for iron to support blood

4. daily supplement of Turmeric 450mg and Coriolus 300mg (also known as Trametes Versicolor/Turkey Tail).

Obviously can't say for certain if any or all of these help but as I said previously I'm sure they haven't done any harm!

So that's it to date. Obviously we're all very individual and each of us will react very differently to both conventional and alternative medical interventions. Hopefully these jottings can help others and maybe give you some ideas for 'self help'.

Wishing you all the best during your difficult journeys

Boyd

User
Posted 10 Dec 2016 at 10:22

Hi Boyd,

Thanks for your post, I can't recall previously seeing Coriolus mentioned in anyone's posts, so for me at least that is something new to add to the armoury.

:)

Dave

User
Posted 10 Dec 2016 at 13:03

Well the treatment maybe helped by measures you have taken, has produced an excellent result at this point in time. It could have been that the type of cancer you have is particularly susceptible to the treatment you had. However, cancel cells can mutate at any time so although looking good, it is too early to be sure you have beaten PCa.

Barry
User
Posted 12 Dec 2016 at 21:12
It is good to read how you have had early success with chemo, I was also blessed with effectiveness of docetaxl.

Like you, I have no idea if diet change will help but also like you I have significantly changed my diet for around 17 of my 21 weekly meals to that of a fish eating vegan.

I have also " discovered " Chinese medicine and have been on some powder concoction for around 6 months now and feel good on it. I was also advised to take reishi mushroom powder twice a day which I have also been doing for 6 months. I had never heard of it before but you may want to look at this https://draxe.com/reishi-mushroom/ , there are plenty of other positive opinions on reishi on google and I am yet to read anything negative so I take it.

Before a load of be careful emails get posted, I have run this past my onco and there are no objections and nothing they feel is negating the conventional drugs I am on, I may be wasting my cash but for now, I feel good, I am getting out and about and am looking forward to Xmas. It could all go wrong tomorrow but I have now had over a year of enjoying living for the day no matter what the future holds.

Sorry for in part hijacking the post but wanted to support taking some control whilst going with the conventional.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

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User
Posted 10 Dec 2016 at 10:22

Hi Boyd,

Thanks for your post, I can't recall previously seeing Coriolus mentioned in anyone's posts, so for me at least that is something new to add to the armoury.

:)

Dave

User
Posted 10 Dec 2016 at 10:44
Hi Dave

As you say it's another element in the attack and as long as it's not doing any harm it may help someone.

Link: https://en.m.wikipedia.org/wiki/Trametes_versicolor

Regards

Boyd

User
Posted 10 Dec 2016 at 13:03

Well the treatment maybe helped by measures you have taken, has produced an excellent result at this point in time. It could have been that the type of cancer you have is particularly susceptible to the treatment you had. However, cancel cells can mutate at any time so although looking good, it is too early to be sure you have beaten PCa.

Barry
User
Posted 10 Dec 2016 at 14:43
Hi Andrew

Whatever gets you through it brother! I'm no New Age hippy type and will mix'n'match if it gives me the impression that it is doing some good; even if it's only psychologically.

Best wishes

Boyd

User
Posted 10 Dec 2016 at 15:19

Hi Boyd

Have you beaten it? Depends somewhat on your definition of beaten. Is that cancer cells all gone or well under control? You've certainly accomplished the latter and time will tell on the former.

As regards diet etc I'm a no supplement and anything in moderation but if you believe adding or subtracting whatever is doing you good then the benefit from the belief itself is no doubt helping you cope.

Keep doing well

Ray

User
Posted 10 Dec 2016 at 17:43

These are great results after such a short time and a positive outlook is crucial but have they explained to you that chemo and HT are not curative treatments? Also a small murmur of caution - while some prostate cancers are particularly sensitive to chemo (hopefully including yours) there are some very aggressive versions where the PSA falls as the cancer becomes more active.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Dec 2016 at 20:17

Just a thought from a Gleason 9 of nine years ago. My nadir was 0.3 PSA. Didn't stop it coming back. Now at 4.0 but fighting on. It ain't over until the fat lady sings. Keep up your guard. This damned affliction is a persistent one. You are never free of it until you pop your clogs, when you have Gleason 9 or 10. Don't worry about that. Keep battling on...

AC

User
Posted 12 Dec 2016 at 21:12
It is good to read how you have had early success with chemo, I was also blessed with effectiveness of docetaxl.

Like you, I have no idea if diet change will help but also like you I have significantly changed my diet for around 17 of my 21 weekly meals to that of a fish eating vegan.

I have also " discovered " Chinese medicine and have been on some powder concoction for around 6 months now and feel good on it. I was also advised to take reishi mushroom powder twice a day which I have also been doing for 6 months. I had never heard of it before but you may want to look at this https://draxe.com/reishi-mushroom/ , there are plenty of other positive opinions on reishi on google and I am yet to read anything negative so I take it.

Before a load of be careful emails get posted, I have run this past my onco and there are no objections and nothing they feel is negating the conventional drugs I am on, I may be wasting my cash but for now, I feel good, I am getting out and about and am looking forward to Xmas. It could all go wrong tomorrow but I have now had over a year of enjoying living for the day no matter what the future holds.

Sorry for in part hijacking the post but wanted to support taking some control whilst going with the conventional.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 13 Dec 2016 at 04:14
Dear Ray, Lynn, AC and Ken

Thank you so much for your replies. I fully realise that this is a condition to live with and that it is never truely beaten. I'm just grateful that I have the time and inclination to get actively involved in my treatment but again I realise that it is such a personal response that we all need to make our own path. As I don't have any signs to suggest that my tumeric and 'turkey tail' supplements are doing any harm so for the time being I'll carry on with them. And the vegan diet, although seemingly extreme, can only be doing me good, and it certainly does focus oneself on what you're pushing into your face! If things change I shall react accordingly under guidance from my consultant but for the time being I'll 'keep on keeping on'?

Wishing you all the best

Boyd

User
Posted 13 Dec 2016 at 09:28

Great attitude

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2017 at 20:13

Having started on Degarelix in July 2015, when my PSA was 168, it gradually came down to 1.7 in July 2016. At my next test in October, it had started to rise and was now showing 11.2. Four weeks later it had risen to 32. My Onco decided it was time to start further management and two weeks later I started Abiraterone, whilst continuing with monthly Degarelix injections.

On the day I started the Abi, my PSA was 51.7 But the blood test prior to my second Abi prescription, showed that my PSA was back down to 4.7 I was obviously delighted by this significant drop, but I have just read Lyn's caution to Boyd about significant PSA drops. The drop in my PSA is nothing like the scale of Boyd's, but should I be concerned? I next see my Onco next week, so maybe I will find out then.

Regards

Peter

User
Posted 20 Jan 2017 at 23:24

Peter it is a significant inexplicable drop (eg a drop even though the man isn't having any treatment or a big drop after a steady rise) that we should all worry about - your drop is expected, explainable (a result of the treatment you are having) and should be celebrated!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jan 2017 at 00:10

That's excellent, thank you Lyn

User
Posted 21 Jan 2017 at 19:12
Originally Posted by: Online Community Member
Hi Dave

As you say it's another element in the attack and as long as it's not doing any harm it may help someone.

Link: https://en.m.wikipedia.org/wiki/Trametes_versicolor

Regards

Boyd

 
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