I don't post often but I do read your posts very regularly and just want to say "thanks" for the information. Two things I picked up yesterday that I found really helpful. I'm not going to try to track back to the actual posts themselves, since i doubt I'll be able t find them, but I am going to try Flax Seed oil supplements to see if they will help with hot flashes. I'll report back on that in a week or so.
Also, to the person who posted the presentation from PCMI 2014 of Dr. Eugene Kwon of Mayo (youtube), thank you. His message was exactly what my feeling is on this whole journey. I don't want a palliative treatment plan, but a curative one. Right now, I'm in that waiting stage, after surgery and adjuvant radiation, and on ADT with PSA tests every six months. I now know that if/when my PSA starts to rise, I'm going to go down to Mayo and see him.
I believe there are some patients of Dr. Kwon on this site. If so, can you identify yourselves? I have a few questions.
Thanks,
Chuck
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And I feel that I should add that I read somewhere that the flaxseed is more effective when it's freshly ground, within a half hour of ingestion. I have a coffee mill which is perfect for grinding the flaxseed.
I'm going through a very difficult time now, under hospice care at home, and last week I had to be taken by ambulance to the hospice unit in Glenview as I was having such problems with extreme nausea and constipation, and eating had become very difficult. They adjusted my meds and sent me back home on the 11th.
I've given up on supplements now, and am mainly eating soup and Boost supplements to maintain energy. Solid foods are difficult to tolerate.
But they're making me as comfortable as possible, It came as a bit of a shock when on the release papers from the hospice unit I read:
"Prognosis < 6 months." I knew that the tie was getting shorter, but to see it in writing was still a shock to me.
I'd never asked my doctors anything about life expectancy, as they really can't predict with any accuracy about how long a patiet will live, but still I'd hoped to last until this coming spring. But more than likely I won't last that long.
But anything can happen.
Thank you so much for your kind words and prayers,
Eric, sorry. I can not tell you how much your messages helped me when I first joined this unique group. You have helped so many people. The number that are praying for you every day is beyond count.
Thank you for being you!
Walt
I am early in my journey. Yes, Dr Kwon shows the way toward aggressive measures to cure. I don't like the word "palliative". Urologists shouldn't either but it seems like most do.
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Palliative is a word and does mean something. Maybe you don't like it as a total care plan, since it is aimed at a symptom rather than at an underlying cause. Palliative care is care aimed at quality of life. Treatments aimed at hot flashes, for example, could be considered palliative. Not sure if they are or are not, of course, since palliative care seems often to be associated with end of life. But I would prefer to die comfortably than uncomfortably, and we all are going to die.
I am a very happy patient of Dr. Kwon at Mayo Clinic in Rochester, MN. Diagnosed in 2014 with advanced PC, Gleason 5+4, 12/12 nodes +, PSA 7.5, age today-50, I was on Lupron, Bicalutimide while undergoing 23 days of radiation and two surgeries to insert HDR. All of my treatments were conducted at Stanford University under Drs. Buoyyanowski and Srinivas. 6 months after treatment my post-therapy PSA rose at a clip of 5 month doubling. I was placed on Xtandi (enzalutimide), Xgeva, and continued on Lupron. Once I saw the medical oncologist who put me on the drug regimen, and diagnosed with mCRPC, I sought out Mayo. After seeing Dr. Kwon, we switched up the chemo to Zytiga, Prednisone and Firmagon, along with Xgeva. Latest scans from Mayo show no signs of mets on C11 Choline PET. Stanford's NAF-18 PET shows mets in numerous places. However, my levels are down; 3 (yes, three) for Testosterone and post-therapy PSA is undetectable. I know this won't last forever, but I still rely on my quarterly Xgeva and my trip to Mayo to see Dr. Kwon. BTW, he is fond of Pinot Noir and really any good red. My best of luck to you! Clark
FYI, the most effective and inexpensive way to use flax seed is to get the whole flax seed, grind it in a coffee grinder and store the ground seed in the refrigerator. Take a couple of tablespoons per day in water or smoothie. It is a great source of fiber in your diet and you will have to adjust the amount you take to get your preferred BM's.
I see no evidence of benefit of ALA (alpha linolenic acid), the main fatty acid in flax seed oil, for men with PCa. In fact, ALA is associated with aggressive disease.
Dr. Myers, weary of being asked about flax seed, wrote a little book:
"Flaxseed Panacea or Poison? - A Health Manifesto" Staple Bound – 2007
by Dr. Charles "Snuffy" Myers. $4.25
Seems like 12 years ago, perhaps 20% of men in one PCa group I belonged to were grinding flax seed every morning. It was a basic belief & emerging negative ALA studies were unwelcome.
A few were using the oil, rather than whole seed, assuming that there was benefit because the Budwig protocol uses it.
I stayed clear of flax until I found a source of flax seed hulls (with zero fat). The lignans are likely to be very beneficial. Only buy products that list the SDG content. There is considerable variation between flax seed crops.
I will just mention the NIH-AARP study (because it was huge) [1]:
"288,268 men with average follow-up of nine years, 23,281 prostate cancer cases (18,934 nonadvanced and 2,930 advanced including 725 fatal cases)"
"ALA intake was related to {a 17%} increased risk of advanced prostate cancer (highest vs. lowest quintile").
Too bad they did not look at the LA:ALA ratio. LA (linoleic acid), an omega-6, competes with ALA, an omega-3. The harmful effect of ALA is moderated by LA. The worst possible scenario is where a man with PCa eliminates fats high in LA & consumes flax seed oil.
I have to agree this is one of the most helpful websites I have ever encountered. Thank you everyone!
As to flax seed, I have encountered the Budwig diet which is a combination of flax seed oil and cottage cheese. The cottage cheese binds the harmful qualities of the flax seed oil. There is a book out on diet. I do not personally subscribe to it. My advice is do your research.
Oh interesting! I sprinkle flax seed on the cottage cheese left in the container to keep the cottage cheese from going moldy. Kind of as a sealer. And a way to finish off the bag of flax seed I bought. No other concept.
Hello cfrees1. I think the guy who posted Kwon's video was responding to me since I started some testing with Gene Kwon. He is personable and I am older than him so I call him Gene and not Dr. Kwon. Too formal for me. I am awaiting my results now from a biopsy of my prostate and right seminal vesicle. I had the C 11 Choline Acetate test and I am following up with the results of. The biopsy is the next step. I am awaiting his findings as we speak. Feel free to keep in touch CFrees. Doc Rok, Minneapolis, Mn.
I think my current question is at what point should I reach out to Dr. Kwon? Is it after I'm castrate resistant? It seems to me that is rather late, but maybe he doesn't see any patients until they have run out of options? Ideally, if my PSA starts to rise, I would go see him. I realize that I'm kind of early in the process (PSA is 0.05 post surgery), but I don't want to go through all of the try and fail, try and fail. It seems to me that Dr. Kwon also see those "low PSA points" as the best opportunity to battle the cancer. I tend to agree with this idea. I don't want to miss the opportunity.
I got referred by my Urologist for the test. That may be one route to get the imaging test if U get that far.. Keep the group in mind that I wrote U about too Cfrees. Doc
I sent U note yesterday about the U. of Mn. Prostate Cancer Support Group. WE meet the second Thursday of the month from 6-8pm at Hope Lodge, 2500 University Ave. SE. WE are meeting next on 10/13/16. I would like to see you there. I lead the group so will be able to talk to you. I live in Mpls., and never have been associated with Mayo, only as a patient. Call me at 612,388.3588. Doc
Hi cfrees. Yes do consider coming to the U. of Mn. Prostate Cancer Support Group on 10/13/16. At Hope Lodge, 2500 University Ave. SE. Park in rear of building. I have an Urologist coming to talk PC. U could ask him any questions U want. Plus meet the rest of the group and get connected. Hope to see U then cfrees. Doc Roc
my thought is that if you have had your prostate removed, your PSA should be zero. If you have had your prostate out, and radiation to the surrounding tissue, your PSA should be zero. The adrenals make testosterone I hear, but they don't make PSA. So if I had a PSA level greater than zero, and no prostate, I would be curious where it is coming from. True that micro-metastases can often not be visualized by any scan, but I would not be waiting for a signal from the PSA of going "up". If you have any PSA level and no prostate, you have your signal.
I can sort of understand ADT even after radical prostatectomy. The doctor is not sure that there are no prostate cells left, so let's put any that remain to sleep with ADT, and hope they die quietly. Would make some sense. So if your PSA was .05 post surgery and radiation, then he knows you have cancer outside the prostate (I think).
In general, don't be shy. You'll get run over. By cancer if nothing else.
Please be careful with flaxseed oil. There is research that shows while ground flaxseed retards cancer growth flaxseed oil accelerates cancer growth. No one knows why. Here is one article.
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Finally Had First Treatment for Advanced Prostate Cancer
Does anybody know?
Update to Can't treat what we can't see
Duration of ADT
Good news from visit at Mayo
