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User
Posted 21 Sep 2021 at 22:52
Turmeric & biokult should be fine but best to check with the RT team / RT dietician before taking any supplements at all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2021 at 00:03

Vitamins A, C, E and beta carotene are antioxidants, these will survive the digestive system. Glutathione is an antioxidant. I think if taken orally it will be broken down in the digestive system and do neither harm nor good.

Many other supplements will be marketed as antioxidants as it sounds good on the label, whether they are or not varies.

Now a good balanced diet is always a good thing, supplements can make up for dietary deficiencies and most are just excreted if surplus to requirements.

When undergoing radiotherapy or chemotherapy the oncologist is trying to poison the cancer cells, so during these treatments we shouldn't be giving the cancer lots of healthy nutrients to help it fight of the attack. Of course it would be nice to give the non-cancer cells the healthy nutrients but we can't give to one lot without giving to the other. So whilst undergoing chemo or radio don't try and live healthy (obviously don't make a deliberate attempt to live unhealthly, the oncologist is trying to provide as much toxicity to your body as he can safely get away with so don't make it even worse for your body). Once treatment has finished resume a healthy diet, take supplements if you want. Hopefully the cancer cells have been killed and you are now providing the good cells with the nutrients they need to recover from the treatment. 

Dave

User
Posted 22 Sep 2021 at 07:17
Thanks Dave and Lyn,For the sake of 6 weeks think I,ll just stay supplement free.I already run the higher risk of proctitis etc due to previous treatment.
User
Posted 22 Sep 2021 at 10:30
Many many thanks for the advice Dave - I have read loads of stuff over the past 6 months but that is perhaps the most important information that I have received. I did a bit of research this morning and that confirms the decision to stop taking all supplements for the next 2 months at least, including the "dodgy" apricot kernels and tumeric. I will meet with the oncologist in November to consult; previously he said he had no issues with patients taking supplements. Steak, crisps, peanuts, egg and chips, bacon ---- welcome back you've been sorely missed.
User
Posted 05 Oct 2021 at 20:08

Today, I had my monthly blood test preliminary to renewal of my enzo prescription on Friday, and the third radiation session (third out of six) . Last month the PSA was 0.04. I mentioned this to the radiation technician and she advised me not to be surprised if I found my PSA rising during RT to then go lower after completion of the course. What is the experience of others on this issue; I tried to do some research but only found papers based on sampling trials quite a while back that were more confusing than enlightening. As for the RT, it is no great shakes although my daughter remarked that I was very pale; last week I had splitting headaches for a couple of days.

User
Posted 08 Oct 2021 at 15:30

Pleased with the result of my blood test today - PSA down to 0.03 and rest of bloods within range apart from red blood cells and haemoglobin.

However after the 3 rd of 6 weekly radiation fractions on Tuesday I am feeling very fatigued and a bit down. 

 

User
Posted 09 Oct 2021 at 02:43

Nice PSA result. They are big doses of RT so no wonder you are tired. Still half way through now.

Dave

User
Posted 09 Oct 2021 at 10:29
Off the top of my head, I can't think of another member that has had the 6 x 6Gy regime who could give you any steer on how they found it. You are a trailblazer!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2021 at 10:45

Originally Posted by: Online Community Member
I mentioned this to the radiation technician and she advised me not to be surprised if I found my PSA rising during RT to then go lower after completion of the course. What is the experience of others on this issue;

I expressed interest in knowing my PSA during radiotherapy, and they said they wouldn't do that - it would scare me. Well, they did do it half way through when taking bloods for other things, and contrary to what I was told to expect, it went lower, but because the hospital which did the radiation used a different lab with less accurate PSA testing, I can't really compare it accurately with all my other PSA tests as it was off the bottom of their measurement range. My PSA a few hours before I started RT was 0.12, halfway through it was <0.1 (different lab from normal), and next reading 4 months after RT, it was <0.01

User
Posted 09 Oct 2021 at 11:02
John's onco insisted that no PSA test was done between starting RT and 3 months after it finished, I think. However, my understanding is that if a man is on HT during RT, the RT doesn't really affect PSA whereas if a man is having RT monotherapy, the PSA can jump around a bit as the cancer cells fry.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Oct 2021 at 11:24

I get blood test 2 or 3 days prior to each prescription renewal. Next is one week after final fraction.

 

I feel less tired today, which is a blessing, 3 days after 3 rd fraction. After 1 st I was a bit under the weather for a day, after 2 nd a splitting headache for two days, so I anticipate 4 days of negative side effects following next week, but nothing unbearable if my mind is in the right place.  

User
Posted 09 Oct 2021 at 12:30
Good to hear that it's been reasonable so far. Side effects are cumulative with RT, and generally peak around 10-14 days after treatment ends (at least with daily RT - don't know if it's different with yours?). I found that after the peak things did subside quickly.

Very best wishes,

Chris

User
Posted 04 Nov 2021 at 16:35
PSA stays at 0.03 which is a good result I think. For the first time in 9 days post last fraction I feel ok. Peeing a lot but a lot less tired to the extent I worked all day on policy documents and i will go out for a couple of pints and some cumberland sausage.
User
Posted 04 Nov 2021 at 19:25

Hi Cayambe. I have been following your journey as it is similar to my husband's who was diagnosed in June G9 T3bN1M1 PSA 75. He started on bicalutamide then zoladex and now Enza also. PSA now 0.6

Radiotherapy begins on Tues 9th, once a week for 6 weeks at Oxford's Churchill hospital. Your posts have given me hope and encouragement. OH is feeling well at present although tired at times. He's not one for forums. I however, prefer to connect with others in a similar situation and appreciate your posts as well as others on this site...a great resource. 

I am pleased you are picking up and hope you continue to improve post radiotherapy. 

 

Edited by member 04 Nov 2021 at 19:25  | Reason: Not specified

User
Posted 07 Nov 2021 at 10:15
A rectification of the nurse's verbal report - my PSA is < 0.03 which I guess mean not measurable. All other bloods good. Tireness continues but not so acute.

Granita I hope your OH fares equally as well. I don't know what RT he will get over 6 weeks but mine was weekly for the sam eperiod at 6 GYs that is apparently a strong dose. As others told me, the effects are cumulative but not permanent.

There is another guy on this message board who received the same diagnosis as me - survival for 5 years and hormone treatment for the rest of his life. He was diagnosed in 2007!! (although he appears to had a whole host of other medical conditions over the past 14 years but I don't know if they are PC related).

Of course, we all bless our great doctors but formal treatment must be supplmented by personal action as the conscience on my shoulder keeps telling me (i.e. my older brother) - exercise and diet.

On diet of course everyone has an opinion and their own preferences . I have broadly continued on the diet I had been following for a year before diagnosis (no sweets, colas, chips and only occasional fry ups) but am eating more and more fish. So in Jan 2020 I was 97 kg, at diagnosis 91 kg and now 85.5 kg). Brother says I must reach 75 like him - no way!! And I refuse to contemplate walking the Cumbrian Way!

I stopped supplements during RT. Now will take tumeric, apricot kernels and a couple of others.

Take care

User
Posted 07 Nov 2021 at 10:40

Cayambe, the radiotherapy will be the same as you had. 6Gys per weekly session over 6 weeks. 

We too have adopted a predominantly Mediterranean diet with lots of oily fish and very little dairy.  OH is on the skinny side,  but he misses his sweets!

We are currently spending the weekend in Weymouth, a short break before the radio starts. Just got out the hot tub... it's a beautiful day here. Then heading out for a walk and eventually a pub. You've got to enjoy each moment whether you have PC or not!

 

 

User
Posted 11 Nov 2021 at 20:58

I had a telephone meeting with the oncologist. Basically, extremely happy with the outcome of the process so far with PSA not measurable. For those like me that respond so postively to treatment, the next few years will be based on 3 - monthly blood tests and continuation of zolodox and xtandi. I asked about the mets and he said that wherever the PC cells are in the body they act in the same way, so any increase in PSA would be the signal for investigation. I asked about treatment holidays and he said no as the current practise is to maintain prescriptions. 

I feel better by the day after my final fraction 16 days ago, although ropey for the first 11. Yesterday at the behest of my brother I walked 7 km (after 3.5 km on each of the previous 2 days) and struggled greatly for the final km. I did however recover quicky so did not curse him too much and managed 2.5 km today. Now to get into the weighs to build upper body and stamina.     

User
Posted 11 Nov 2021 at 22:49

Hi Cayambe, Always good to hear positive news. Sounds like your treatment has worked well. It's great that you have managed 7km. Impressive! Onward and upward then. Are you sure you don't want to attempt the Cumbrian Way?

OH had his first fraction of 6Gys on Tuesday. Looking forward, his last session is scheduled for Dec 14th so I'm thinking we will prob have a very low key Christmas. We are lucky to have both our daughters and their families within walking distance of us. Close enough to pop in and pop out again if it gets too much. 

Wishing you all the best. Thanks for all your posts. 

 

 

User
Posted 11 Nov 2021 at 23:05

The Cumbrian way is to sit on the couch and do nothing 😂. I am negotiating a short part of the Northumbria coastal route - say 5 miles!  I hope that you manage to have a nice Christmas. If it goes the same way as me, OH  may feel a little more animated by the 24 th.  If he goes as pale as I did he can play the ghost of Christmas past, but timing will  be crucial as he will quickly  recover his normal complexion. 

User
Posted 12 Nov 2021 at 00:45
Great result Cayambe 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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