Radiation Started 7th session. Diet ? Exercise ? Supplements? Work?

[sharpcut]

UPDATE Just began my 2nd week of Radiation (6 more weeks) Began Lupron/ Casodex feb 25th '20 PSA undetectable DECIPHER test was covid-19 Delayed so still waiting Exercise - Jog 3 miles and lift weights (when I have the energy) daily My only supplement is Ginger in my tea. Modified Citrus Pectin 3 x day 5 grams and Vit D 2000 IU Stopped Tumeric. I work from home mostly

I come to my Radiation Appointmets with Full Bladder and Empty Bowels

Lymph Nodes Prostate Bed and Lower Pelvic Region

My Radiation is at MSK Westchester Dr Boris Mychalczek

We are talking today What questions should I be asking him ? How do I know this is the right path ? That the treatment is working ?

ALSO THINKING ABOUT CHANGING MY DIET TO KETOGENIC ? anyone tried this ?

Low Insulin Levels are the important part of this ? I have been on a high Carb Diet my whole life without issues until PC RALP 8/18 PSA 6.3 G 7

Now 169 lbs not much body fat but having lost 12 lbs of Muscle from ADT

I want to get off this Lupron/Casodex as soon as Radiation is over !!

Looking for Comments

I am so grateful to you all for being so generous with your time

It means a lot to me !

[Magnus1964]

I hope your vitamin D is D3. Vitamin D3 is is better and more bioavailable.

Don't be too quick to get off casodex and Lupron. You should stick with them as long as you can. There are no guarantees with radiation.

[sharpcut in reply to Magnus1964]

Thanks Magnus yes D3. Lupron / Casodex was for radiation effectiveness I was told If I have to start on I will. but hopefully PSA will hold after Radiation

[Tall_Allen]

Do not make any changes to your diet or take any supplements without consulting your RO. Many of them may interfere with what radiation is trying to accomplish. He may have given you a diet to minimize bowel motion while receiving radiation (ironically, the extra body fat might have been protective). With cancer in your lymph nodes, you cannot get off Lupron for 2-3 years.

You won't know if the radiation worked until after you get off Lupron in about 3 years and your testosterone returns to normal. You can't stop and restart it either - that is asking for trouble by selecting for resistant cancer.

[sharpcut in reply to Tall_Allen]

Thank You TA. Respect your opinion and always look for your response on any post ! Need to clarify. RALP 8/18. No Lymph Nodes No Seminal Vessels PNI yes Gleaso 4+3 PSA non detectable until 13 months later 9/19.

Then 3 consecutive rises ending at .13 as of 2/20/20 then Lupron/Casodex with Radiation.

Spoke to RO 5 minutes ago. DECIPHER TEST isLOW RISK I think that is good news ! ? He said I could stop. Stop Casodex !! No more Lupron after this shot wears off in June Very Pleased with that news. RO said do not begin a New Ketogenic Diet now! Although I do intend to reduce carbs because of all the sugar

Do you think I could restart Lupron if PSA makes an ugly return. ?

I hope my bladder rectum and sexual health are not damaged permanently.

Thanks TA appreciate your input as well as Alll my brothers in battle with this insidious disease

[Tall_Allen in reply to sharpcut]

Sorry - when you wrote that lymph nodes were being irradiated, I wrongly assumed that they had detected some cancerous ones. You are right that because you were treated at a low PSA, continued Lupron is unnecessary.

Your RO is right that this is not a good time to make changes in your diet. Wait until the radiation is over. Your body gets accustomed to the diet you've been on, and changing it can affect bowel motility - not something you want right now. I'm not sure why you want to reduce carbs, but it can wait, can't it?

You can take low dose daily ED meds to potentially protect your penile blood vessels. Full bladder. Empty rectum. That's about all you can do.

[sharpcut in reply to Tall_Allen]

Ok. I do take nightly 20 mg sildenafil I always have a full bladder empty bowel

Great! This gives me confidence to keep the status quo with diet and all I am doing

Thank You ! You are so generous with your time I hope karma prevails for you ! As well as rest of the crew here !

[zgjc09 in reply to sharpcut]

Sometimes the radiation is effective sometimes not. It all depends if it contacts the right spot, In my case it was ineffective and we moved on to another treatment.

[sharpcut in reply to zgjc09]

Thank you. Sorry to read that. How are you doing now ?

[zgjc09 in reply to sharpcut]

I feel ok but PSA continues to rise - been on Xtandi for months and it is not working either - going in for a pet scan soon - will see what is next -

[pilot52]

Consider a Peloton if you really want to work out....the online coaching is over the top unless you are a tour rider!! I have been on Lupron 5 years and Xtandi 18 months....and my energy level rocks...67 yrs old....I am making gains in the gym because I am hitting it harder...when diagnosed I had been on HGH for 7 years and obviously strong....I was 230 now 185...It is a brave new world...Everyone has there way...I drink Athletic Greens with my Xtandi every morning.....just so I remember to do both....Blue Skies , Sky King and Penny (woof)

[Tommyj2 in reply to pilot52]

Just to clarify...you were 230lbs while on HGH and since being on ADT you have dropped 45lbs??... of muscle?...combined?

[pilot52 in reply to Tommyj2]

Yes I need to defiantly clarify......I was 230 on HGH and Test...then I was diagnosed with HPV positive squamous cell of the base of tongue...due to a local ENT missing the diagnosis completely he botched a surgery taking out what he said was a cyst and in fact was a cancerous lymph node...seeded my entire left side of neck including my scar due to tumor spillage..end point had to have 45% of my jaw replaced due to ORN. I lost a lot of weight going through that....then got back to 200lbs. Since 5years on ADT I lost a lot of strength but now making decent gains back with a dedicated program...The Peloton has given me incredible leg stamina....since on the Peloton I have to eat to keep 185...you really do a lot of work and there are no rain days, or cold days...Blue Skies.. Just to note I have always had a nice workout facility at home so that really helps...

[Tommyj2 in reply to pilot52]

Thank you for the clarification... I’m sorry for your bad luck but compliment you on your resilience in coming back from all of that!... Are you still on ADT?... I’m presuming that you are building some muscle if you are intentionally trying to maintain or gain weight.. not easy to build muscle while on ADT from what I have been reading here.... thanks for the response....

[pilot52 in reply to Tommyj2]

Hi, I am on Lupron +Xtandi, yes I am regaining muscle strength.....I do not really know what my normal is since I was on HGH+ Test for many years but my workouts are getting better...I do take Creatine Monohydrate ......Blue Skies....

[sharpcut]

Wow. Love it ! Amazing ! Your mindset is awesome ! I will look into that I have heard nothing but good things ! Thank you

[Gemlin_]

Diet and exercise must be good but your dietary supplements may not be something to take during treatment. There may be a small risk that dietary supplements will strengthen cells, especially antioxidants, but now you want to weaken the cancer cells so that they die from the radiation.

[sharpcut in reply to Gemlin_]

Thanks Gemlin. I have stopped all supplements except my ginger tea and MCP I also check with MSK Naturopathic Doctor before continuing during treatment Appreciate the input

[RonnyBaby]

I would take a deep breath and slow down a bit because you appear to be jumping ahead of what a treatment plan would look like by making some assumptions prematurely.

I would encourage you to read up on the specific treatments (and side effects) that lie ahead.

I was 'radiated' and treated with ADT based on my diagnosis and test protocols. You can't rush this or will this away. Patience and education will serve you well. There's a ways to go as you heal but based on what you've presented, there are reasons to be optimistic, in due time.

I wish you well on your journey.

[sharpcut in reply to RonnyBaby]

Hi RonyBaby. You make perfect sense I am trying to slow down my thinking I will only have one shot to try and nip this in the bud (if that is possible ?)

[treedown]

I stopped most supplements during radiation not because my RO recommended it but because of what I read. I ruled out the Ketogenic early on but have reduced my carb intake severely since my dx, mostly beer. My doctor did tell me not to eat cruciferous vegetables due to gas which ruled out a large portion of my normal diet. Due to this my diet was less than favorable IMO during radiation. I even started back on my mostly vegetable intake my last week and almost missed a treatment due to gas but was able to move past it. I lost quite a bit of weight between dx and radiation only to find out recently that might not have been the best but what can you do. I plan on picking my treatment and not looking back, only forward.

[sharpcut]

Thanks treedown. I have heard the same. Some fat is protective from stray radiation. Hard to be the perfect patient I try to maintain forward thinking as well Its all about keeping a positive mindset ! Good Luck

[j-o-h-n]

Chocolate chip ice cream (two scoops)...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/13/2020 9:59 PM DST