I am 69 and was diagnosed approximately 4 months ago with locally advanced Ductal Adenocarcinoma of the Prostate, Gleason 8, with seminal vessel involvement.
I've been on Eligard for 3 months and had blood tests yesterday but I don't have any results to share yet. I also had a CT SIM yesterday in preparation for RT.
I take a fair number of supplements and I asked my Radiation Oncologist if I can continue to take them during the RT therapy. I was told that I CANNOT take the following supplements during RT and for two weeks after completion (which is 8 weeks):
VITAMIN E
TURMERIC
COQ10.
GARLIC
MAGNESIUM
FISH OIL
ARGININE/CITRULINE/VITAMIN C
QUERCETIN
BLACK SEED OIL
MUSHROOM EXTRACT
GRAPE SEED EXTRACT
I was advised that I CAN take the following supplements during RT:
VITAMIN D
VITAMIN K
MISTLETOE
MAGNOLIA BARK
IP6 INOSITOL
MELATONIN
80mg ASPIRIN
I acknowledge that people on this site are extremely knowledgeable and well experienced in these matters therefore I would like to get some feedback regarding what I have been told. All of the supplements that I CANNOT take were being employed long term for cardiovascular reasons, so stopping them gives me pause for concern. For instance, stopping the use of CQ10 bothers me because I take this to offset my daily 40mg Lipitor meds.
In terms of Eligard side effects, I have experienced the hot flashes so far but to date nothing else apart from lack of libido and no erections, which I expected would happen. I am exercising frequently using a Bowflex Max Trainer, which is kicking my arse. I'm also using free weights.
After being on this cancer train for a few months, I realize that this is a long journey from which few return. I have a good attitude and realize that being positive and keeping a sense of humor is essential.
Thanks for reading this.
Written by
TottenhamMan
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Thanks. I have no intention of ignoring the Oncologists advice. I'm new to all of this and I'm naturally inquisitive. This is usually a good place to find information that can help me understand what is happening to me. I'm just trying to learn my friend, that's all.
I am no expert, been fighting PCa 15 years. I take many of the same supps on your list. Had a few Pet/Ct scans and have never been told to stop during procedures. Never had radiation
Thanks T A, I didn’t understand the role of supplements in the context of RT. Now I do and I have since read a bit about antioxidants. I now fully appreciate my oncologists advice. I just received my blood test results and they show a PSA of 1.2 and Testosterone of 0.6 after 3 months of Eligard. I’m assuming that this is the expected result.
Did you look into Brachy Boost Therapy? I see that in a previous post, I recommeded to you: "I recommend you see Peter Hoskin at Mt. Vernon Hospital in Northwood. You will also need 2-3 years of ADT with it - possibly with an advanced hormone therapy like abiraterone. Possibly chemo as well." Did you talk to Dr Hoskin? We have definite proof that brachy boost therapy is more curative than EBRT alone.
Hey TottnhamMan - Glad to find a fellow 'Ductal Differentation' PC. Seems we share a similar beast. My Gleason was 9 with a PSA of 1.4 , diagnosed in November 2020. The aggressiveness of this cancer is certainly rare. Mine is quite large, and has attached/pushed into the rectum.
I have no clue on how to answer your question. I have read so much and believed so much at first. Now, after just a couple of months, thinking the supplement and diet regime I first began can be overkill and overwhelming.
My Mayo Doc says, basically, eat what you want and avoid the really strong supplements (like Essiac Tea). I am on Lupron/Zytiga/Abiraterone for now. I am sure more practicing medicine is to follow.
This site does have so much supplement information, and some of the 'debates' are quite entertaining to read. All good.
I do know that my diet and exercise has made me feel the best i have felt in 20 years - will continue, for sure. I was looking at the Bowflex, and opted for a rowing machine.
Hi Dave, thanks for reaching out. You and I belong to a very rare club. The Ductal Pca diagnosis was a terrifying experience for me. My Urologist immediately began describing how he would recommend a full pelvic exenteration during which he would remove my bladder, testicles, prostate, and rectum, as well as part of the pelvic floor. He advised that I would have two ostomy bags for the remainder of my life. He told me that he had only seen three cases of Ductal Pca in his long career. That was the beginning of my trip down the rabbit hole. Thank god we didn't follow his initial recommendation. The Urologist refused to remove the prostate so I still have the f-----g thing. I talked to the Oncologist about Brachytherapy and Brachytherapy boost but I was informed that it was "out of the question". I still intend to push back on that based upon advice from TA.
I was diagnosed in October 2020 so your journey started around the same time as mine. I've been on Eligard for 3 months and will have 5 or 8 weeks of RT commencing in March. In terms of supplements, I am going to stop taking everything except Vitamin D, Vitamin K, and aspirin until RT is complete.
Prior to Dx I had no idea that Prostate Cancer was such a complex disease. My diagnosis was the result of having a kidney stone removed, whereupon they started to notice a few things that didn't look right. I was asymptomatic so without the occurrence of a kidney stone, the cancer would have remained undiagnosed until it had spread far and wide.
I had a bone scan and it showed no distal spread at this point. Everything that I have read about this variant of Pca points to poor outcomes and lack of knowledge in terms of specific treatments. You and I will end up being referenced in an Oncology paper at some point in our future.
You sound positive and that's great to see. I have also developed a positive attitude after the first few months of futile worry and panic.
I live in the worlds freezer section (Canada) so with COVID, Cancer, and Cold, life is not easy. Stay in contact Dave as I would like to follow and share your progress, and I will also reciprocate.
I hope that everything goes really well and that we can both live for a few good years yet.
By the way, that Bowflex Max Trainer is a killer. The main exercise program is only 15 minutes long but due to the intensity, it takes most people a week to two weeks to be able to complete the full program for the first time.
My husband was diagnosed with ductal Pc in 2017 ..Gleason 10 Prostrate was removed in July of 2017 , scan reviled spread to bones, started casodex , loupron in Nov. of 2017 along with 6 rounds of docetaxel . Dr said an agressive cancer should be treated aggressively, when chemo was finished in April of 2018 he started on Zytiga. PSA is currently at .01 . No vacation for him Dr says we have to stay on the loupron and continue the zytiga till it stops working. We have really been blessed and I guess what I want to say is that there is hope.
Forgot to add that he was 69 at diagnoses and his PSA was 22 , he is currently 73 and he eats what he wants and has stayed at the same weight. He also was tested and has the ATM gene along with a few others.
Thank you so much for your message. It’s so important to get information about others who are walking the same path. I does give me hope when I read your husbands story. It looks like he is doing well, and I wish you both a long life together. Thanks for your message of hope.
Wow, that first Urologist should stick to maybe, home remodeling, or demolition of buildings, not bodies!
I too had no clue on the seriousness of PC, let alone our identified ductal cancer. I had a TURP done in December, my urethra was seriously bent with the growth and could barely piss. Prior to that procedure, all Dr's were quite certain a proctectomy could be performed , with a real positive outlook. After the TURP and pathology report - Dr never really went into details or showed the scans with explanations, had very quiet response and passed me over to oncology. The Dr never did go over the specifics of this cancer either. Evan after asking, just said we need to treat it with ADT + Zytiga.
Second opinion at Mayo was a real eye opener, and switched my care from CTCA to Mayo. Not only for their extra personal attention and explanations, but they just have newer and better equipment, and better Dr's, IMO.
Met with my Mayo Dr yesterday for follow up. They did order a full genetic work up and we went over the genes that I am lucky to have inherited. My main culprit is the Lynch gene from mom's side. There was one other gene too, just can't remember the name....but with the that determination and some other cell growth factors (tmb at 58.9?) , he brought to the table possible immunotherapy or PARP inhibitor for future treatments to add. Radiation is still on the table too. Nothing to determine until next scan in 6 - 8 weeks. Fingers crossed that this bastard is shrinking....
All my scans also showed zero mets to anywhere else too. However, the close by lymph nodes are damaged for sure.
I finally told my 4 kids ( kids no longer - all close to 30 and older) the exact diagnosis and terminology yesterday. Up to now, just been sugar coating. My wife is super supportive, but likes to sugar coat, and honestly believes my cancer was from spending too much time in my kayak, fishing last summer!
So, my goal this summer is to spend even more time kayak fishing! Feeling great, trying to plan our summer get away's, and this damn treatment regime better not get in the way! I have my priorities, and just cannot sit around, waiting.
Let's prove these stat's wrong, and get the most out of this ride!
Hi Dave, I hope you are doing well. I paid privately for genetic testing but they found no anomalies. I’m not sure that the tests that I purchased were as in depth as they would have been at the Mayo Clinic. Was that the Mayo Clinic in Scottsdale AZ? I’ve seen that facility a few times.
We have a condo in Scottsdale but we haven’t been down for a visit for around 15 months due to COVID. I love it down there and as soon as I am able I intend to spend a month down there again. I have/had a passion for golf but haven’t played much for the past two seasons. Golf season in Canada only runs from May to September so the season is short, much like the fishing season. I’m not a fisherman because I’ve never tried before or been out on a lake to even try it. In Alberta the popular species to fish are northern pike and Walleye/Pickerel. Walleye is apparently very good to eat. I love eating fish so it’s a shame that I never got involved in the sport.
You seem to have a great support network with your wife and family, especially your wife. My wife is the strong silent type and she simply believes that I’m going to beat this cancer because I’ve always been what she calls a “tough guy”. I’ve tried explaining the complexity of this disease to her but she just denies it. I have two sons in their early thirties. They are both in denial and don’t want to discuss anything to do with cancer. Everybody deals with this thing in their own way and that’s good with me. There really isn’t a right or wrong way. Did your kids take it well? That’s the thing I now understand about having cancer, which is that it affects so many people around you. That part is so sad.
I start 5 weeks of radiation next week, so the adventure continues. After almost 4 months on Eligard the hot flashes were becoming a real nuisance at night. The doc prescribed me with Effexor (an antidepressant) which apparently mitigates hot flashes. After two weeks on this med the only thing that I feel is that my head is full of wet cotton wool. It should get better after a couple more weeks.
I finally got my first COVID shot this week. My son is a pharmacist so he had the pleasure of inoculating me. I’m pleased that I got it before I have to visit a cancer centre every day for the next 5 weeks. The weather up here is mild for March. The temperature got up to 12 centigrade this week which for us feels quite warm after a winter of minus temperatures. I even saw a couple of people driving convertibles with the top down. Canadians eh!
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