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Old 06-22-2012, 12:26 PM   #1
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livingatlake HB User
Another newbie

Hello everyone!
I have been lurking on this site for several years and finally managed to join.

I would like to thank all the active members for the invaluable information provided here, some of which we have acted upon.

My husband was diagnosed in 2009 with a Gleason 7, PSA 15. Failed IMRT, his nadir was 1.9 and within 3 months jumped to over 3. We immediately began a vegan diet, no red meat, no poultry, no dairy, no sweets, lots of green tea, cruciferous veggies, LOTSA FATTY FISH etc and were able to maintain PSA within the "3" range for 2 years. I make him vegetable soup every day with various beans and spices (especially tumeric & pepper, and cumin). I do believe that with the big jump in PSA over 3 months, the diet has helped maintain his PSA.

His radiation oncologist would not recommend HT because of QOL for the time being and the prescribed HT at this time was ongoing, not intermittent. I really became uneasy when I discovered that others were concerned with a lower PSA. We thought we were in good hands because we were at PMH, a well recognized cancer facility. This is when I started my research. His PSA slowly climbed to a high of 5.9 during the last year (dropping to 5.1). During this time, we went to the prostate cancer conference in LA last year (thanks, Jim, I got the idea from you). We were also doing the biocucurmin, pom juice, lycopene etc.

We saw Dr. Myers last fall (my hero also, Baptista), had the Sand Lake imaging done (no insurance) and found metastatic lesions in lymph node area...took the images to PMH and the radiation oncologist refused to do further radiation since it was too close to the original radiated sites. He is concerned with bladder etc. and we are too. He presented our case to the tumour board and they agreed with him. He still was not convinced that we should start HT and to wait until PSA was about 10 but we insisted and lo and behold, they are now talking intermittent (finally late 2011) but for 9 months and not the one year that Dr. Myers wants. Dr. Myers had prescribed Proscar and Lupron but radiation oncologist refused and said Lupron only. We started Casodex for the flare 2 weeks prior to Trelstar (not Lupron) shot. PSA within 2 weeks was 2.1. When the rad onc saw this, he said we could continue on with Casodex. His PSA after one month is .11.

We are in the process of getting a second opinion re ogliometastatic radiation program done in the US. Bear in mind that we have difficulty getting the Proscar here in Canada since the pharmacies do not recognize a prescription out of province and we can't get our gp to prescribe it since they defer to PMH. Zufus, I can't even get on that online drug site from Canada. Rhonda is helping me with this.

We had an update appt with Dr. Myers last month just as I read Baptista's concerns over intermittent therapy and I had asked Dr. Myers to address this on his videos and that a lot of us were concerned.

Myers said ok to chicken yippee!! (only white meat), we still have to watch sugar intake since insulin is borderline and he is not fat, size 32 waist. Can't wait to get Dr. Myers new book for diet. We are now on his growth arrest program.

Just an aside for those Canadians, during our research we found that Sunnybrook will radiate bone mets concurrent with HT but not lymph nodes. PMH will radiate lymph nodes but no HT...(2011, hope this changes quickly).

We are going to the LA conference again this Sept. to hear about the new advances with metastatic disease. I know we can read about them online but it nice to get their perspective on them. Is anyone else going? I highly recommend it...where else can you ask Drs. Strum, Myers, Lam, Scholz any questions and reply immediately? Would love to meet anyone there...Tall Allan, are you going? Anyone else?

Any comments/input for the above are appreciated.

Take care,
livingatlake

 
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Old 06-24-2012, 02:31 AM   #2
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Re: Another newbie

LivingAtLake

Thanks for sharing your story. Hopefully your husband does well in the arrest program. In any case the PSA of 0.11 at the one-month mark since starting HT (down from 5.1) is evidence that his cancer responds well to hormonal manipulations and therefore to a successful outcome.

I am sorry for the “rigidity” of your doctor in accepting Myers’ standards of treatment. However, not all doctors (in USA, Canada or Europe) follow the some protocols or use the same thresholds to judge outcomes or trigger treatments. Dr. Myers himself recommends different approaches in similar cases.

The basics in hormonal manipulations seem to be equally followed by whichever doctor. The difference comes when detailed targeted medications are required to arrest the growth. An example is the use of drugs such as Avastin or Celebrex that slows angiogenesis (the growth of new blood vessels).
Mono therapy (single blockade) double or triple seems to get us to similar outcomes. Many do well in mono and many do well in triple. At the end of the line is whether one can achieve full arrest of cancer as seen in negative image studies, low levels of T and constant PSA plateaus. One must try what fits better to his own case. If mono is not enough then it should be increased to double, triple or go further with an increase in potency of the drugs.

We are aware that in some cases a low PSA does not represent full arrest (in tumours producing low levels of PSA), or that in some cases the cancer is sort of indolent for the long period in doubling. But the importance of the PSA as a marker of disease progression should not be disregarded. The threshold of PSA=10 (your husband’s radiation oncologist value) is just too high for an intermediate risk patient.

Testing and constant vigilance is the way to follow each case. I would recommend him in defining a care program which should include heart health, diabetes, bone loss preparedness together with the more traditional testing used to control the treatment and the disease. Testosterone, DHT and lipids (full collection) are imperative. Image studies to check for apparent metastases should be done occasionally.
The side effects need also to be mitigated. I have engaged in a sort of fitness program and diet care. I expect Intermittent to be the best choice for my case, until it is valid or possible.
I believe in the effect of certain supplements/vitamins in the care of PCa, particularly D3 and B12.

Welcome to the board.
Wishing you luck with the treatment.

Baptista

 
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Old 06-24-2012, 11:38 AM   #3
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livingatlake HB User
Re: Another newbie

Quote:
Originally Posted by Baptista View Post
LivingAtLake

Thanks for sharing your story. Hopefully your husband does well in the arrest program. In any case the PSA of 0.11 at the one-month mark since starting HT (down from 5.1) is evidence that his cancer responds well to hormonal manipulations and therefore to a successful outcome.

I am sorry for the “rigidity” of your doctor in accepting Myers’ standards of treatment. However, not all doctors (in USA, Canada or Europe) follow the some protocols or use the same thresholds to judge outcomes or trigger treatments. Dr. Myers himself recommends different approaches in similar cases.

The basics in hormonal manipulations seem to be equally followed by whichever doctor. The difference comes when detailed targeted medications are required to arrest the growth. An example is the use of drugs such as Avastin or Celebrex that slows angiogenesis (the growth of new blood vessels).
Mono therapy (single blockade) double or triple seems to get us to similar outcomes. Many do well in mono and many do well in triple. At the end of the line is whether one can achieve full arrest of cancer as seen in negative image studies, low levels of T and constant PSA plateaus. One must try what fits better to his own case. If mono is not enough then it should be increased to double, triple or go further with an increase in potency of the drugs.

We are aware that in some cases a low PSA does not represent full arrest (in tumours producing low levels of PSA), or that in some cases the cancer is sort of indolent for the long period in doubling. But the importance of the PSA as a marker of disease progression should not be disregarded. The threshold of PSA=10 (your husband’s radiation oncologist value) is just too high for an intermediate risk patient.

Testing and constant vigilance is the way to follow each case. I would recommend him in defining a care program which should include heart health, diabetes, bone loss preparedness together with the more traditional testing used to control the treatment and the disease. Testosterone, DHT and lipids (full collection) are imperative. Image studies to check for apparent metastases should be done occasionally.
The side effects need also to be mitigated. I have engaged in a sort of fitness program and diet care. I expect Intermittent to be the best choice for my case, until it is valid or possible.
I believe in the effect of certain supplements/vitamins in the care of PCa, particularly D3 and B12.

Welcome to the board.
Wishing you luck with the treatment.

Baptista
Thanks for your kind interest in our journey, Baptista. You have noted some very good points ie lipid test, DHT etc which I must admit I sometimes gloss over. His d3 is excellent but why B12?

It is nice to read your overview of the various types of HT because sometimes I get emired in an issue (re obtaining prescriptions) and I need to look at the bigger picture. My husband feels nauseous at times. Is this a common thing?

Just keep your comments coming, Baptista.

Thanks,
Livingatlake

 
Old 06-24-2012, 12:04 PM   #4
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Re: Another newbie

Hi Livingatlake,

As you know, we'll also be at the conference and, hopefully, we can be enlightened even further with this disease.

As for the Canadian online website for meds, I once had the website and, unfortunately, I can't find it in my long list of bookmarked websites.

Chuck Maack once referred me to the US website and, from there, I found the Canadian sister company, so you might want to touch base with him on that.

Now I'm going to check the side effects of Avastin...I wonder if that will be Dr. Myers' next suggestion....and the battle continues.

Rhonda

 
Old 06-24-2012, 12:07 PM   #5
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Re: Another newbie

Ugh...just checked online...Looks like Avastin has the same risk as Celebrex...Not surprising since they are similar drugs.

Oh well...we'll leave the next plan of action up to the expert.

Rhonda

 
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