43 with stage 4 prostate cancer

[Maffy]

Hi Brian,

 

Thanks for this info. Good to hear your story. Hope if you don't mind me asking a few questions. So, how many years have you been on treatment now? Has the PSA been restrained? How do you cope with the cost of your treatments?

 

It is good for people like us who are new to the situation to know these things. 

 

Maffy

[Brian Lawrenson]

I was diagnosed with PCa in 1999 Had brachytherapy in 2002. My Psa has been up and down between 2.0 and 14.0 over the years. The rate of rise is the indicator for action. I suppose my message is that PCa can be managed and to do this you need to take the responsibility not your doctors. Knowledge is vital. I must have read over a dozen books.My brother who went through a similar process wrote one called the ABC of Prostate Cancer Today. It is quite up to date. He also has a newsletter which goes to a significant number of support groups in Australia. One of the reasons why he wrote the material is because health professions in Australia are very limited in their knowledge of the more modern new and successful treatments. They are just too busy coping with patients to have time to read or go to overseas conferences. My Lutetium-177 treatment is an example. The cost of the treatment comes out of our dwindling retirement fund. I've also had a PSMA PET scan which is also not on the PBS. It is really necessary to keep track of where the growths are once the PCa has gotten out of the prostate. And whether they are getting smaller or larger. In my case a second scan smaller. One of the main things is that managing PCa time up you time. 

Exercise and diet are vital to keep things under control. I have never felt unwell throughout my PCa.

Good luck

Brian

[Cam]

Just a quick update to my story.... had PSA test last week and after 10 weeks of hormone therapy it's dropped to 0.053 (went from 1.88 to 1.00 after 3.5 weeks).  MedOnc is opting to stick with it for 3 months without additional treatment then do another PSA and PSMA PET scan to regroup on the plan of attack.

 

Cam

[Brian Lawrenson]

Cam and others,

Cam great news....lets hope the PSA stays down and you can get on with your life. But I hope that you are watching your diet. It will help stop any return.

I thought that everyone might be interested in my Lutetium 177 treatment results. There was a very positive story last night on channel 7 about Lutetium treatment in Melbourne at the Peter Cullum Cancer Centre. I had my treatment at the Macquarie Imaging Centre which is where the West Australian Dr Lenzo has set us his Theranostics Clinic. There are some details of my background in my previous posts so I wont repeat them. But my latest report is my PSA is down to 1.74 which is the lowest that it has been in 10 years. Equally important my Creatine level in the blood - a marker of how well the kidney is functioning came down from 120 to 105 (now in normal range). The cancer growth had spread and strangulated the tube from the kidney to the bladder. Due to prior radiation of the bladder a stent could not be inserted to clear the blockage. But lowering the cancer activity seems to have released the part blockage. I'm having a PAMA PET Scan in two weeks which will be used to make the decision for a third treatment, if needed. At $9,600 each I hope not but then how much is your life worth. The Lutetium 177 treatment was done at a day centre and was completely comfortable. I could have gone out for dinner but I did have to keep away from children, pets and pregnant women for a couple of days. I honestly believe that this treatment is worth exploring. There have been trials in Melbourne and I believe they will soon be one starting in Sydney at St Vincents. Note that the treatment is only for men where the cancer has spread outside of the prostate. 

[Maffy]

Thanks Brian,

Cam, good to hear that the PSA has gone down. I'm into my second week after my second chemo (Taxotere) and ADT (Zoladex). After the first chemo, I was hospitalized after the first week because I had a severe sore throat and my GP did a blood test and found that my white blood cells went down to zero so I was told to go to emergency. So, hospitalized for five days and then came home with sore throat gone but still feeling dry throats at night and has to wake up and drink some water. I'm doing the mouthwash with sodium bicarb. They decreased the Chemo 25% this time round and I'm feeling much better. I'm on my eighth day after Chemo 2 and still feeling well. I'm taking your advice Brian, on diet because I also can hear that from other cancer experts. I'm trusting that the current treatment will help together with dieting. On exercising, I'm told to avoid the gym for fear of infection but today I went in for a treadmill walk. So, the journey goes on but I'm also watching my diet now.

 

Till next time

Maffy

[Cam]

Thanks Maffy and Brian.  Not sure if you dialled into the Dr. Moyad session last Friday, but if not, it's well worth a listen on youtube.  I've renewed enthusiasm not to be a "passenger" on my PCa journey after listening to the session.  The emphasis on being aggressive and using combination treatments really struck a chord with me considering my MedOnc was only interested in Zoladex for now with a review in late October.  Exercise has never been an issue for me as I'm used to going to the gym daily, but diet changes are something I've found more difficult and are only now getting on top of (dramatic reduction in red meat intake was the hardest).

 

Maffy, I hope this chemo round is easier for you.

Cam

[pauldhodson]

Hey Cam, I am half-way through listening to the Mark Moyad presentation. My oncologist is also only interested in mono-therapy (Zoladex). I've tried to convince her to add Casodex and Advodart/Dutasteride to my list, but she won't listen to me (regardless of what evidence I show her). I'd be keen to hear how you go with your Onc. Cheers Paul.

[Charles (Chuck) Maack]

Hello Paul, if you think your oncologist would even take the time something you left with her regarding the importance of 5AR inhibitors, you might provide her this url or print it out and give to her at a next appointment: http://tinyurl.com/74bkzam 

 

[PeterH]

Hi Cam,

 

Your decision to "not be a passenger" has to be your best yet and there's a lot of good info out there. But be careful, there's also a lot of BS. The average oncologist does not have time to keep up with all the latest research, as shown by the problems related in earlier posts show and Robyn Williams, presenter of the ABC's The Science Show, found. It was reported that Robyn found his own knowledge was about five years ahead of his oncologist when he had bowel cancer. A regular part of the program is an interview with a research scientist and/or PHD student about the research they are doing. His knowledge, and the program, are literally at the cutting edge.

Did you notice that Mark Moyad said (@ 0:22:48):

"One other thing    .... I'm excited about is the possibility of other types of diet ... A Ketogenic Diet ... makes people feel good ... is another option that is getting countless clinical trials right now ...to potentially rob the tumour of any different types of sugars that it could utilize for growth.  ...there's a lot of diet options... But in 2017, the buzz word is, and will continue to be for the next year of two, will be high-fat diet to see if you can lose weight and/or suppress tumour growth."

In my own case, a rising PSA shortly after surgery meant radiotherapy. But when it was rising again 6 months later I very, VERY reluctantly adopted a Keto diet. It is the exact opposite of my 50+ years of low-fat beliefs—but the science convinced me to try. My PSA then reduced in two months, became undetectable (on the high sensitivity test) in nine months and has remained undetectable since (for 18 months). It is also vastly easier to comply with than I would have imagined (thanks to my wife's cooking) although eating out is not so straight forward.

 

If you're interested in looking into this further, don't hesitate to contact me.

 

Best regards

 

Peter

[Maffy]

Hi PeterH,

 

I'm interested in knowing what is involved in this ketogenic diet. Is it possible to give it here so that whoever might be interested can try it out too. I'm doing a Mediterranean diet watching closely on the amount of carb I'm eating. I'm convinced from the literature available that dieting with everything else that are available to us with metastatic PCa can assist in curbing the disease.

 

Thanks,

Maffy

[Maffy]

Thanks Cam,

 

Good to hear from you. Indeed, this time round, the chemo seems to be gracious in a good way. I'm only experiencing dry throat and itchiness and a blood stained nose. I'm starting to think that the 25% reduction was a bit too much because I'm not feeling much of the more serious side effects. But I'm thankful otherwise. The same goes with the ADT (Zoladex) which is combined with my Chemo (I'm glad my Onc is open to doing both at the same time). From time to time at night I feel hot flushes but it's not too bad given the current Sydney cold weather. My sex lipido has no changed though and thankfully with the penile injection therapy, my missus is still happy. But she's really understanding of my situation which is really good. I have listened to Dr Moyad and found him really helpful in summarizing all the various forms of assistance besides medicine that can be of help to our physical conditions. Anyway, stay positive Cam. As a Christian, I find resorting to prayer from time to time a wonderful way of retaining my confidence in life even through these tough times. I'll pray for you too, Cam. Keep up the good work.

 

Till next time,

Maffy

[PeterH]

Hi Maffy and Cam etc,

 

Further to Mark Moyad's comments about diet, a really fabulous talk entitled Augmenting Cancer Therapy with Diet, is given by Dr Colin Champ who, a graduate of MIT, is a radiation oncologist at the University of Pittsburg, in the US, treating mainly breast cancer patients. Wanting to give his patients the best possible advice when they asked what they could do themselves, he looked at the advice from all the leading cancer centres across the country and found that they varied enormously. I'd say, as north varies from south.

 

His talk is at:

www.youtube.com/watch?v=ot96y5-D_K0

 

I can guarantee that it will be time VERY well spent.

 

Cheers

 

Peter

[Cam]

Hi guys,

 

Diet is a really interesting subject.  I'm only scratching the surface but until reading about this ketogenic diet, everything I'd previously read pointed to low levels of red meat.  Sugar reduction seems the common theme but everything else appears to be questionable.  Peter, I'm happy to hear the ketogenic diet has worked for you and I'll look into it further.... I'll also check out the link you provided (thanks).

 

Maffy, sounds like you're doing well (in context of course).

 

My main focus for the next couple of months is substantiating the "androgen annihilation" approach Dr Moyad mentioned.  

 

I say f&%) it to this cancer and I enjoy a battle.

May the force be with us.

Cam

[Charles (Chuck) Maack]

For Maffy: Simply typing "Ketogenic Diet" in the search box of the internet should provide you several explanations of the Ketogenic Diet, or you can simply click here: http://tinyurl.com/y9lvgry6 

 

[PeterH]

Hi Maffy, Cam etc,

 

There are no large scale trials show Keto can help but, as I've had to point out to my Onc, there are none that show it doesn't work, either! First, DO NO HARM. What really convinced me to give such a dramatic diet change a go was the science.

1.          Every carbohydrate eaten is turned into glucose (some carbs much faster than others) and tumor cells are primed to take maximum advantage of this “feast” (Indeed, this is the basis of PET scans where radioactive sugars are injected into the blood and tumors are detected because their uptake of the sugars is MANY times greater than that of normal cells). This characteristic of tumors has been used for many years for diagnosis, but is only now starting to be used for treatment.

2.         An elevated glucose level (hyperglycaemia) is bad for us and, consequently, a glucose spike triggers a corresponding insulin spike, designed to “push” the excess glucose into all available cells—especially tumors.  Every insulin spike promotes cancer growth.

3.          Most normal cells can function perfectly well on a diet of ketones (made by the liver from fatty acids) instead of using glucose

4.          Most tumors have damaged mitochondria and that makes them dependant upon glucose. They are unable to process ketones—so become stressed when on a ketogenic diet and more susceptible to chemotherapy and/or radiation.

5.         Even though you maintain normal sugar levels on a Keto diet, the tumor misses out on the (normally frequent) glucose spikes and consequent insulin-promoted growth spikes.

6.          An insulin spike following carbohydrate consumption also triggers production of hormones such as Insulin-like Growth Factor–1 (IGF–1), that prime tumors to take maximum advantage of the glucose feast that is arriving, thus further promoting tumor growth

7.          An insulin spike also triggers the tumor to produce Tumor Angiogenic Factors (TAF) to stimulate the production of an enhanced blood supply to the tumor—to feed its insatiable appetite for glucose.

Without this new blood supply, a tumor cannot grow larger than about 0.5mm. Dr William Li, co-founder of the Angiogenesis Foundation, talks about anti-angiogenic food here:

https://www.ted.com/talks/william_li

Note that a ketogenic diet is extremely anti-angiogenic by maintaining insulin levels at an absolute minimum.

8.          Tumor cells are more susceptible to attack from free radicals than normal cells. This is largely the basis of radiotherapy which generates free radicals in the vicinity of the tumor. Indeed, anti-oxidants are best avoided during radiotherapy treatment for this reason. I really wish someone had told me.

9.       Tumor cells, deprived of their normal glucose “fix”, become stressed and are even more prone to free radical attack. Conversely, the KD has been shown to be anti-inflammatory and normal cells fed on ketones enjoy enhanced protection from free radical attack.

 

Putting these together resulted in an easy decision—a real no-brainer. After taking a few easy precautions, there's an obvious fantastic potential upside and, what's the worst that could happen? It wouldn't work! Our regular therapies are good and getting better every day, but they're not yet so good that they don't need all the help they can get.

 

Cheers

 

Peter

[Maffy]

Hi Peter,

Thanks very much for this info. Very very helpful. I think for us in our situation, things like dieting doesn't hurt. I'm convinced about the low carb diet and the ketogenic diet and/or just simply cutting down on carb and sugar from our diet. Keep up the good work.

 

God bless

Maffy

[Maffy]

Hi guys,

 

This is a link to an abstract from the Scientific Journal "Nutrition and Cancer" on Turmeric

 

http://www.tandfonline.com/doi/full/10.1080/01635581.2010.509835

 

Blessings,

Maffy

[PeterH]

Hi Maffy,

 

I know going keto can be a challenge, an emotionally and physically helping and supportive partner is almost vital. So for anyone who can't manage it, just remember that every carb you don't eat will be doing you a favor. Protein should be quite modest, too. One gram per kg of ideal body weight. If we eat more than we need for maintenance, it gets converted to (OH NO!) more carbs. The fats, of course, need to be the healthy ones, too. Extra virgin olive oil, avocado, coconut oil, MCT oil (but you need to get used to that one).

 

Best wishes

 

Peter

[Cam]

Had been a very long time between updates. Had six rounds of chemo ending Jan 10 the 3 blasts of stereotactic radiation therapy ending mid Feb.

 

One month without aggressive treatment wasn’t good for my head.

 

Had tests done mid April and testosterone was still too high at 1.1. After much stress and anxiousness, had orchiectomy on Monday.

 

So, this disease is a f’ing prick and I will fight it to the end. At now 44yo I’m astounded what damage has been done down there..

 

Wine in hand and ice pack on balls (that used to there), I wish you all a great weekend.

 

Cam

[Barree]

Hi Cam,

 

Yes, it has been quite a while between your up dates.

I have been wondering how you have been going. Although the thought of it tends to be hard to grapple with Orchiectomy seems to me to be a logical step to take when ADT is not doing the job.

What treatment are you contemplating next?

 

Cheers,

Barree

[pauldhodson]

Hey Cam, Thanks for the update. You're a courageous man. I hope this decision pays off for you. I have had persistently high blood pressure from my Zoladex implants, which is a worry, so I've considered going down the same path. Never give in, you're a young guy with lots to live for. We're with you all the way. Cheers Paul.

[Cam]

17 hours ago, Barree said:

Hi Cam,

 

Yes, it has been quite a while between your up dates.

I have been wondering how you have been going. Although the thought of it tends to be hard to grapple with Orchiectomy seems to me to be a logical step to take when ADT is not doing the job.

What treatment are you contemplating next?

 

Cheers,

Barree

Hi Barree, I'm going to try very hard not to think about more treatment for a few weeks (having a quick break in Fiji next week), then my next blood tests are on June 7.  Hoping both PSA (which was up from 0.014 to 0.034 over a six week period at last test prior to orchiectomy) and testosterone levels are down, otherwise I suppose I'll be entering the next phase of this disease.  

Hope you're going well?

Cam

[Cam]

15 minutes ago, pauldhodson said:

Hey Cam, Thanks for the update. You're a courageous man. I hope this decision pays off for you. I have had persistently high blood pressure from my Zoladex implants, which is a worry, so I've considered going down the same path. Never give in, you're a young guy with lots to live for. We're with you all the way. Cheers Paul.

Hey Paul, yep, this was a big psychological decision but I'm sticking with the approach that I've taken since first diagnosis: throw the kitchen sink at PCa and hopefully hold it back for many years.  If you consider the orchiectomy and need someone to talk to, you know where to find me.

Cam

[Maffy]

Hi Cam,

 

Good to hear from you. I often think of you and pray for your situation.

 

I sympathise with your frustrations at this disease. As a young man myself (now 48; had my prostate and sex nerves removed when I was 46; had my 6 rounds of chemo finished in November 2017), it is shocking to us, to wake up one day, when we still think we're in our prime, and found that the reality of death is no longer a far away call.

 

In my case, it has helped to take on a thankful mentality. I must admit that I'm a Christian, but even if I wasn't, I can see that those people who are vying for "positive" attitudes in life have a point - what we say becomes who we are. So cheer up mate. I'm extremely thankful that there are treatments for our Prostate cancer here in Australia. If I were to remain in my own country in the Pacific, I could have been dead by now because there are no treatments at all.

 

The Bible's philosopher Solomon Ben-David (c.980 BC) says, "In the day of prosperity be joyful, and in the day of adversity consider: God has made the one as well as the other, so that man may not find out anything that will be after him." (Ecclesiastes 7:14).

 

Till next time,

 

Maffy

 

 

 

[Cam]

3 hours ago, Maffy said:

Hi Cam,

 

Good to hear from you. I often think of you and pray for your situation.

 

I sympathise with your frustrations at this disease. As a young man myself (now 48; had my prostate and sex nerves removed when I was 46; had my 6 rounds of chemo finished in November 2017), it is shocking to us, to wake up one day, when we still think we're in our prime, and found that the reality of death is no longer a far away call.

 

In my case, it has helped to take on a thankful mentality. I must admit that I'm a Christian, but even if I wasn't, I can see that those people who are vying for "positive" attitudes in life have a point - what we say becomes who we are. So cheer up mate. I'm extremely thankful that there are treatments for our Prostate cancer here in Australia. If I were to remain in my own country in the Pacific, I could have been dead by now because there are no treatments at all.

 

The Bible's philosopher Solomon Ben-David (c.980 BC) says, "In the day of prosperity be joyful, and in the day of adversity consider: God has made the one as well as the other, so that man may not find out anything that will be after him." (Ecclesiastes 7:14).

 

Till next time,

 

Maffy

 

 

 

Hi Maffy,

 

Thanks for your support. I hope you are doing well.

I just keep on battling through this incurable disease hoping I last long enough for it to be curable!

 

cam