My first Post. Guidance needed please.

[riichardd]

Hi everyone.

I’ve been a member of this forum for some months now gathering information posted from some very well informed people who have been kind enough to share their knowledge and experiences and help those of us afflicted by this terrible disease .

This is my first post so here are some details of my journey with PC to date.

I was diagnosed in January of this year (2018) with PC. Gleason 5+5=10 Adenocarcinoma in all cores. PSA 15.9.

I’m 65 years old reasonably fit living in Yorkshire England. My PSA has been around the 5.5 mark for about 5years pre-diagnosis. They did a digital examination of my prostrate late 2016 and concluded it should be kept under observation. So, it only took just over a year for PSA to go from 5.5 to 15.9.

Scans showed seminal vesical involvement and at least one enlarged pelvic lymph node. A bone scan showed a possible metastasis in a rib and four nodules in my lungs two 10mm across and the others half the size. They started me off on zoladex in January but held off chemo until they did a biopsy on the lung nodules to determine the type of cancer it was. Unfortunately, the biopsy was unsuccessful they couldn’t get a sample because the nodules were too small. By this time it was May so they scanned me again, the scan showed all the lung nodules had shrunk a little which indicated that it most likely to be PC . I was then started on six infusions of Docetaxol over an 18week period.

I had pretty much the full side effects of the zoladex. Hot flashes, fatigue, mood swings same with the Docetaxol.

My Psa went as low as .58 during the chemotherapy treatment but gradually crept up throughout the treatment to a value of 17. Unsurprisingly a post treatment scan showed some lymph nodes had become more enlarged. While one of the nodules in my lungs had grown from 6mm to 48mm. The plan now is to biopsy the large tumour in the lung but in the meantime I am to start Enzalutamide. There was another option to have Jevtana but they thought their was less risk of infections during the planned biopsy if I used enza.

My current drug regimen is

Bisoprolol and Rivaroxyban (blood thinner) for Atrial fib

75mg aspirin

Mirtazapine anti depressant . Simvastin , I have managed to source some metformin which I plan to start soon.

Zoladex. Enzalutamide to be started 10th December

I use some complementary medicines which are, European milk thistle, IP 6 with inistol, Transfer point Beta Glucan, 75mg aspirin. I have some BIRM on order.

The biopsy is to confirm what type of cancer is in the lung. They are not planning on doing any mapping or identification work on the genes. I queried this regarding getting targeted treatment done or other treatments, if not on the NHS through trials. The oncologist didn’t think it worth while as these treatments are in their early stages and not proven. My oncologist is a very nice caring person but doesn’t seem to want to stray very far from the standard of care provided by the NHS or prescribe drugs not approved by NICE

I am seeing the her tomorrow if anyone has any suggestions to persuade her to get some investigative work done on the genes I would be grateful.

I am worried, my disease has progressed very quickly and want to be ready with a plan for when Enzalutamide and then Jetvana no longer work for me.

I have been plagued by a soreness in my back passage for some weeks now, its not external but I would say an inch or two from the end of it. My GP has done a digital examination of it he can feel the hardened prostate but cant find any other reason for the soreness. I made it plain to the GP I was very concerned about the inflammation and wanted it treated rather than just give me pain relief. The inflammation and pain really flared up about 2 weeks ago. I was due to have a TURP procedure that week so I told them unless they could give me some assurances that the TURP would not aggravate the soreness in the back passage I didn’t want to go ahead with it. My reasoning being that the catheter I have fitted works ok and I wanted the inflammation in the back passage dealt with before any other procedures took place. Subsequently the TURP has been cancelled and a colo rectal team are due to do an investigative procedure on the 19th December. To date my GP has prescribed Ibroprufen for the inflammation and codeine for the pain. His best guess is that there could be a fissure in the colon or it’s the tumour causing the soreness.

If anyone has any suggestions on how to get the inflammation reduced and under control I would be glad to hear from them.

Recent Bloodwork figures

Alkaline Phosphatase. Has been as low as 50 but recently has risen to 69.

C. Reactive protein. Has been less than 5 throughout.

Testosterone is less than .42

PSA has risen from 6.55 on the 11th oct to 17.7 on the 21st November

I am determined to do all I can to control this disease and stay around as long as I can to enjoy my lovely family and live life to the full. So any advice would be much appreciated. I am prepared to travel and may be able to afford some private treatment when needed.

Many thanks and good health to you all.

Richard

[dac500]

I am very sorry to hear about your very aggressive prostate cancer. The doctor should have taken steps in 2016 to diagnose your cancer. Please take control of your treatment and treat it aggressively. There are many options open to you to keep the cancer from growing further.

[Fairwind]

It sounds like you are doing all there is to do...Don't bankrupt your family traveling to seek treatments that are unproven or offer very little benefit at great cost..Dosetaxel did not work very well for me either, but Cabazitaxel seems to be working better. Just be sure, 48 hours after an infusion, you get a Neulasta injection to beef up your WBC.. Also, there is another low impact, low cast treatment called BAT that can be effective but it seems to work best when the Zoladex stops working..If you are into supplements, Curcumin can't hurt..Best of luck to you...

[riichardd in reply to Fairwind]

Thankyou for your replys dac500 and fairwind. I,m glad to hear Cabazitaxel is helping you fairwind long may it last. I reckon I.ll probably get round to giving it a try and when i do I'll remember your tip about Neulasta. I'll look into the BAT treatment you mentioned Ive read snippets about it on this forum including a guy from oz doing a do it yourself version of it. I havent the knoledge or confidence to try that but if the treatment is available in the uk it may be worth a shot!

[Tall_Allen]

Hi Richard,

It sounds like you are very much on top of things. I agree with you that a genomic analysis of a tumor is only useful for for rare disorders, and isn't likely to change your treatment decisions. The pathological analysis is much more likely to be informative.

[riichardd]

Hi Allen, thanks for your reply. To be honest I don't feel "on top of things". I suppose I'll have to get used to the twists and turns of this horrible disease. It was a real downer when one of the lung mets had grown so large so quickly, and why only one? I am wondering what on earth is going on and what are we dealing with when parts of supposedly the same cancer behave so differently.

To be fair from what i have learn't on this website my treatment to date has been good. Its been up to date standard of care treatment as per what the findings of the stampede trial brought about. Its just that I've been dealt a bum hand regarding the type and aggressiveness of the cancer I've got and I might need just a bit more than the standard of care offered by the NHS to improve my chances of surviving longer. So this is a step to find out what there is out there which might help my fight against the disease. Already Ive had some useful info from forum members for which i am grateful but i might add any further suggestions would be very welcome!

[MichaelDD]

Richard .. I will be hoping the best for you. I was diagnosed 2016. DaVinci July 2016 . 38 radiation sessions Oct 16 to Dec 16. 3 body/bone scans no mets located.

I was just diagnosed with mets only to the lungs . No bone , no lymph node. This was this past October '18 by GA68-Psma UCSF San Francisco CA. Multiple nodules (more then 10) largest 10mm. Lupron/Zytiga are now happening. Both MO's my personal and one now at UCSF have expressed that shrinkage is "expected". Still a lot of "concern".

Will be following your journey. Good holidays to you..

Michael.

[riichardd in reply to MichaelDD]

Hi Michael, thank you for your kind thoughts. I've had a look at your profile and I really feel for you. I can see the what you are going through as are i'm sure many others are here with us on this forum. I went through a stage when i was first diagnosed of feeling pretty sorry for myself eventually it passed and was replaced by a determination to fight the disease and kick the it into touch. I guess my expectations were too high, I was thinking the Zoladex plus the Docetaxol would at least give the disease a good pasting and put it into remission for a few months maybe even a year or two. It was a shock to say the least to find out it had actually progressed quite a lot during treatment it certainly wasn't what I expected. Anyway today is a new day and I'm going to try and lose the sorry for myself feeling and get positive. I'm going to see the Oncologist later on today, she's starting me on Xtandi and no doubt will give me a good talking to regarding the do's and dont's of taking it.

Here's wishing you a peaceful and happy time this xmas Michael and good luck and results with your treatment.

[CalBear74]

Are you taking IP6 capsules or powder? If powder, how many scoops? Is it taken on an empty stomach mixed in water only (nothing consumed 2 hours prior)? Do you wait at least 30 minutes after the dosing session before eating? Do you know the number of grams taken daily? What is the brand?

Sorry about all the questions. I have been using IP6 for 3 plus years.

These links may also be helpful:

healthunlocked.com/advanced...

healthunlocked.com/advanced...

Have you read this book? You don't want to miss this.

amazon.com/IP6-Inositol-Nat...

NOTE HOW MANY TIMES DR. SHAMSUDDIN TELLS YOU IN THE BOOK THAT IP6 IS DOSE DEPENDENT AND TIME DEPENDENT. THE MORE YOU TAKE AND THE LONGER YOU TAKE IT THE BETTER THE RESULTS. GET AGGRESSIVE. DON'T WAIT ON OTHER THERAPIES TO CONCLUDE. THIS IS COMPLEMENTARY MEDICINE AND HAS BEEN USED WITH VARIOUS CHEMOS. SEE SHAMSUDDIN'S DISCUSSIONS.

Have you tried turmeric/curcumin for the inflammation? Try one gram before every meal.

Berberine root is the natural bioequivalent of Metformin. I take it daily 3x instead of Metformin. It really knocked down my A1c. I use the Solaray brand.

Good luck.

Bidh mi ag ùrnaigh air do shon.

[riichardd in reply to CalBear74]

Hi CalBear. I take the powder form of IP-6 and it is on an empty stomach and for sure i dont eat anything after it for 30 minutes. It says on the container to take one level measure (6.9g) twice a day which i do. On the label it says its manufactured for IP-6 international inc Melbourne, Fl. USA.there's a telephone number 011-1-321-786-2204 and a website ip6gold.com. I get the 414g tub and pay over 60GBP for it. I haven't had time to read the links yet and i haven't got the book, so I'd be glad to hear your thoughts on what i'm doing at the moment.

Curcumin has been mentioned in a previous post as well so i'll be looking into that as a another possible anti inflammatory to add to the list of "extras" I'm taking. I do hope none of the drugs/supplements I'm taking have an adverse effect on each other or me! I'll have to see if there's a way to check that out.

Have you got a target for A1c? How often do you do the test? Would there be any advantage of using berberin over metformin ? thats assuming that you had a supply of Metformin.

Hope you don't mind me asking so many questions and feel free to ask as many as you like from me.

Thanks for taking the time to answer my post CalBear and I do wish you all the best This festive season

[Daddyishealing in reply to riichardd]

do hope none of the drugs/supplements I'm taking have an adverse effect on each other or me! I'll have to see if there's a way to check that out.

Try one at a time not all at once you can better gauge the supplements then. If in chemo or radiation supplement list changes a bit, but I can say turmeric has amazing properties and will NOT hurt you. Make sure it has proper in formula or add pepper if drinking powder. Cbd oil? Wobenzyme? Soy lecithin . Find out if soy being estrogenic in activity is a positive or a negative. Theres always sunflower lecithin for nerve pain and mm is neuroprotective and can help with pain. Leave no stone unturned . Quality of life. As the daughter it's hard to ever say quality over quantity so I wont say the over...but thetes healing in just having more freedom from pain. I truly wish you peace and gentle healing and some days in the sun or singing in the rain. The men on here amaze me with their smiles they refuse to surrender. And so will you xo

[riichardd in reply to Daddyishealing]

Hi, you are right its a big step forward if you can get rid of some of the pain. You are better able to concentrate on getting stuff done which in my case is to tackle the inflamation which is causing me so much trouble at the moment. I saw my oncologist on Monday and her opinion is that the pain I am suffering from is probably inflamed LNs. She has started me off on xtandi but other than that they have only given me painkillers.I have a very aggressive cancer which has already kicked zoladex and Docetaxol into touch, although xtandi is a very good choice my gut feeling is its very urgent back it up with supplements or drugs which although not approved by NICE may help to control the inflammation. At the same time I want to be sure what I'm taking isn't going to make me ill. and as you rightly point out to try them individually to confirm no ill effects is a sensible way forward. My frustration is it all takes time and that's something a Gleason 10 doesn't have. Iv'e been on xtandi for 3 days now taking 160mg per day. Ive experienced pain in my legs some belting hot flashes but the worst thing is the fatigue. But after saying that as long as things don't get any worse I have some BIRM in the post and i'll be trying it as soon as i get it. Next step might be to try Metformin which I already have or Avodart which I can obtain. Not sure what to try first. Neither of these drugs are available on the NHS for PC so i wont be getting any advice there. Any thoughts on what I'm doing would be most welcome.

Thank you for answering my post and all the best to you and your family and rest assured I'll be looking under a lot of stones this christmas for ways to combat this horrible disease x

[Daddyishealing in reply to CalBear74]

Which turmeric brand do you use or do you do the powder form in shots 3 to 4 times a day?

[CalBear74 in reply to Daddyishealing]

Daddyishealing,

I use 2 different brands concurrently. 2 capsules of "Turmeric-Curcumin with Triphala and Black Pepper".The company is Doctor Recommended and I get it through Amazon. I also take 2 capsules of "Curcumin Phytosome with Meriva". The company is Healthy Origins and I get it from Lucky Vitamin or Jet.com. I take these 4 capsules before every meal with other supplements.

amazon.com/Turmeric-Curcumi...

express.google.com/u/0/prod...

Good luck,

CalBear74

[Daddyishealing in reply to CalBear74]

Ty so much calbear. Interested in that second one I never tried. Cool !!!

[CalBear74]

You will want to read the two posts that I provided links for. The content addresses the question of dose. I hate to tell you that your dose is probably too low to impact the cancer cells. Their instruction on the canister specifies a prevention dose. You will probably need to move your dose up to at least three in the morning and three scoops in the evening. I take six in the morning and six at night. Read the post and you’ll understand what have been the consequences.

You have chosen an excellent manufacturer. I usedthat brand for more than a year, but I had to go to enzymatic therapy Cell Forte in order to save some money. Their quality is excellent also and they have been in the business of manufacturing IP6 the longest.

My target for A1 C is 5.6. I have achieved that. I was in the prediabetic range and I had to get it down. (My brother is a type two diabetic.) I don’t know of an advantage in berberine over Metformin that medical research would support.

[j-o-h-n]

Remember God is on your side. A Joyous Christmas to you, your family and friends.

Tiny Tim: "God bless us, every one!"

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/11/2018 12:01 AM EST

[riichardd in reply to j-o-h-n]

Thanks for the extra info CalBear and John i did have a look at your profile can't remember why now.... but anyway nice to hear from you and wishing you the very best for the future

[Tub111]

So sorry to hear your story. My hubby has the same pain in rectal area and has been assured it is the large hardened prostate as well as lymph nodes and mets to pelvis. (Profile has all info if interested)

We start 10 rounds of radiation this Monday hoping that it will reduce size and that the rectal pain eases.

Sorry I don’t have much to offer in advice but hopefully your treatment and my hubbys work to give another try at anything new.

Merry Christmas to you and yours.

Sheri (wife, caregiver, cheerleader)

[riichardd in reply to Tub111]

Hi Sheri, I've had a look at the profile and can see what you are going through, hopefully the radiation will ease the pain in his prostate and have some effect on the mets and LNs as well, They are going to check me out next Thursday in hospital so I,ll see if they can help ease my problem. From the profile it looks as though your OH urinary problems were even worse than mine. I was due for a TURP but refused it because I thought it would aggravate my other problem. I have a catheter fitted which works but would be good to get rid of it. I know your OH needed a TURP urgently but if he was in a similar position to me would do you think he would still have it done?

[Tub111 in reply to riichardd]

I honestly would say yes. Even with the issues he had during first one, he didn’t even hesitate on the second. Hubby is an avid hockey player and was skating 5 weeks after 1st and 3 weeks after his second one.

He chose this surgery as he is also a plumber by trade and is very physical through that.

That being said, each of you have many differing issues and no two cases or people or recovery is the same.

Would never want to give any advice, just wanted you to know his side and reasoning for choice.

Sheri (wife, caregiver, cheerleader)

[riichardd in reply to Tub111]

Thanks Sheri I appreciate your reply. I must say I am pretty envious of your OHs ability to exercise and do strenuous stuff like hockey while on treatment, Reading posts on the forum it suggests people can be very different on the amount of work or exercise they can do even on the same treatment. Even on a good day a couple of hours of light work/exercise and bang I can suddenly run out of energy with barely the strength to walk. It might take one to two hours of rest to recover before i can get going to do something else. Its hard to accept this as the new normal after leading a pretty energetic and physical lifestyle.

Anyway Sheri thanks for contacting me and i wish you both all the best for the future.

[Tub111 in reply to riichardd]

I will say that I do know he pushes it too far and like you needs those rests and breaks. I think he mentally pushes himself to do the work and hockey to actually keep his mind off his disease. Some may say it’s therapeutic others may say it’s advoidance. I say do what your body and mind will let you do and listen to it as well. Lack of T and the hormone treatment can be overwhelming. Physical changes are beyond anything you all as men ever expected.

I dislike the words accept the new normal both physically and mentally. I would rather say wake up each day with one goal and never get down on yourself if you don’t complete it. Just give yourself something to look forward to when you can.

I pray your journey throughout this battle goes well too. Looking forward to the future!