My History

[NiallMcC]

I'm Niall and am now almost 67 and was diagnosed in Oct 2013, PSA 620 and out of 12 cores in my biopsy, 10 were normal and a Gleason 3+4 in one and 4+4 in the other.  Widespread metastases in all my vertebrae and ribs, a little at the top of my right femur and one in my skull.  No organ or visceral involvement.  Have been on combined Zoladex and Abiraterone more or less since the beginning and a bone scan 7 months ago revealed a reduction of maybe 40 to 60% metasteses.  At that stage my PSA which had gone down to 0.1 had risen to 3.6 and I have just completed a 6 month course of Radium 223 infusions.  Today my PSA was 2.9.

I eat lots of fruit and veg, take Cod liver oil daily together with Pomi-t, Ginger root extract, Brocco max, Garlic tabs, CBD oil and pomegranate juice. Lots of tomato products and cruciferous veg.  I eat white fish, tinned salmon, ( I don't like fresh salmon), chicken breast occasionally and red meat only about once or twice a year.

I exercise by jogging/walking/gardening to try and do 16 to 24k daily.

I feel really well and fit and can do absolutely everything I want, perhaps I get a little tired in the evenings, but life is excellent.

For those of you recently diagnosed take hope.  It is certainly devastating and naturally myself and my wife had plenty of tears, but life can go on pretty much as before and remember the pace of scientific and medical discovery regarding this pernicious disease is gathering pace so whatever you do DO NOT DESPAIR!

Niall

[Dr_WHO]

Thanks for the positive message.  I am a 58 year old who had the misfortune of having a rare type of PCa that does not increase your PSA.  As a result, when they found it, the cancer has already spread.  Had surgery on April 18 which did not get all of the cancer.  We'll be starting radiation and/or hormonal therapy as soon as I heal up.  It has been a whirlwind these last couple of months.  It is great to hear from others that are fighting the good fight.

[NiallMcC in reply to Dr_WHO]

Fight, fight, fight!  We are no different than other cancer sufferers.  The disease is a f**king bastard, but it can and will be defeated.  Please, even though your disease is atypical, if you look after your body by diet and execise and listen to your experienced doctors, you will at the very least get many more years of quality life.  When you exercise and feel tired, make yourself do a little more, even if it is only five minutes.  Never say that " I've had enough"

Lots of love and understanding from a very lucky man,

Niall

[Dr_WHO in reply to NiallMcC]

Rocky has nothing on us!!  Fighting to the last round!

[Prellch in reply to Dr_WHO]

Hi Dr_WHO,

I also have a rare  type of PC that does not increase PSA.  Mine is neuroendocrine PC.  What type do you have?

Thanks,

Chuck

[Dr_WHO in reply to Prellch]

Sorry to hear about your case.  I hope that you found it earlier than later.

The doctors are still figuring it out but they told me it was some form of metastatic ductal adenocarcinoma prostate cancer.  As I understand it, the cancer forms first in the ducts (the reason the PSA does not go up).  It is only when it is advanced that some of the traditional prostate cancer markers become apparent.   Unfortunately, since it is in the ducts, it uses the lymph "super highway" to spread the cancer throughout the body.  I hope that you are getting better information than I am from the doctors.  Most of what I know comes from google.

[Cancersucks]

Hi Niall,

Ex-husband diagnosed last year with PSA 2700 and widespread met disease,age 44. He has struggled with side effects of treatments, depression and what to expect.  His family doesn't understand the seriousness of his illness or his personal struggle.  His cancer progressed while on chemo and he is refusing more chemo.  His PSA nadir came quick to 12 and quickly rose, now at 32, which is difficult to accept.   Wish you all the best.  Did Xofigo help with pain?  That is our next treatment.  Even though Xtandi has not lowered PSA, Onc wants him on it indefinitely.  Like you, very active and pain ranging from 5/10 to 9/10.  He handles that well.

[NiallMcC in reply to Cancersucks]

My dearest,

I am so so lucky.  I suffer virtually no pain.  A little back pain. But very moderate and I put that down to my job. ( a retired dentist ).  I have a genetic link, my brother ( 4 years older ) has localised prostate cancer, my father had it included on his death cert, a brother 8 yrs older died of pancreatic cancer and various family females have had breast cancer.  Your husband is so young, you must tell him to not give up.  I promise you that attitide has an ENORMOUS effect.  If he fights that bastard cancer, yes honestly he will lose in the long run, but he will have many, many years extra. Kiss him, cuddle him, make him understand that you need him.  Research has shown that fit healthy (otherwise ) patients who have the right frame of mind, eat sensibly, exercise significantly, obeys their medical team gain more years.  Please tell him that you will not allow him to give up and leave you in the shit.   Please let him know that his fight is your fight.

Best wishes,

Niall

[JoelT in reply to Cancersucks]

It sounds as if you are still in touch and concerned about your ex-husband, will he listen to your advise?  Keeping him on Xtandi when it doesn't work is not something I have heard anyone recommend.  So, I would question that decision. 

You didn't mention his other treatment history.   If he has not yet had Zytiga (abiriterone) he should ask his doctor about it. 

In answer to your question about pain and Xofigo, yes in most situations men who are having pain from the bone mets do experience pain relief.  Hopefully, he too will receive this benefit.  BTW, when he is given the Xofigo he should also still be taking the other treatments at the same time (meaning Xtandi or Zytiga).  Many docs don't realize that Xofigo was tested along with the standard of care given at the same time and not as a separate, distinct treatment.  It should be given in combination.

There are a number of clinical trials which also should be considered.  Clinical trials are a way for a person to get cutting edge treatments when they otherwise are not available.  Yes, they are still unproven, but many people have had very unexpected benefits.

I would also STRONGLY recommend that he get a second and a third opinion.  These opinions should be obtained from a large academic facility and they should not come from the same facility from which his doctor is associated.

Joel

[Cancersucks in reply to JoelT]

Thank you for the advice. Unfortunately he cannot easily obtain a second opinion as we live in a rural area and he is on Medicaid. He is very uneducated about his disease and just believes he is going to be fine and live for a long time. He is now taking morphine and oxycodone daily for pain in his sacrum and left hip. He does listen to my advice (I'm a nurse educator and clinical director of an addiction clinic) but the unknown future progression of his disease is very stressful.

[2548oo]

niall

you may find a book by dr john lee on hormone balance of interest

  neil

[charmander]

Niall I love you man!!  You're my hero with the positive attitude.  Thanks for the positive energy and good diet advice.  I've copied your dietary ingredients and will be trying myself.  Thanks for sharing.

[docbulldog]

I have not been told about supplements to my diet other than taking a good multivitamin and Magnesium. My treatment consists of a leupron and Xgeva injection every 3 months. After reading several comments from a number of strong PC survivors I see a lot of dietary supplements mentioned. Could I get some advice on what I should be adding to my normal fairly healthy diet?

Also I have mentioned earlier that I have been experiencing a lot of foot pain, neuropathy I assume, as well as some intercostal nerve pain. Could this be caused from the drugs I am being administered?

I would love to get comments on this entry. Thank you

[NiallMcC in reply to docbulldog]

Clearly it is important to eat properly and there is no magic food that will cure our disease, but some foods/supplements have been demonstrated to slow the progress of the cancer. These include, tomatoes because they contain lycopene, (best cooked ), cruciferous vegetables, ( brocolli, cabbage, cauliflower etc ), pomegranate juice, green tea, cod liver oil, turmeric. It has been suggested that garlic and ginger may also be beneficial. I personally take Pomi-t capsules daily. These contain extracts of pomegranate, brocolli, green tea and turmeric and were tested in a British hospital showing a slowing of the PSA doubling time. ( I have no connection with the company!).

I have eliminated dairy from my diet completely and practically never eat red meat anymore. I eat white fish and chicken breast ( no skin ) 2 or 3 times a week.

There is quite a lot of dietary advice online, but make sure it is from a reputable source such as a respected hospital or research institution. I should avoid quack remedies such as trying to make your blood alkaline.

Ask your doctors and nurses and I am sure they will be able to point you in the right direction.

Best wishes,

Niall

[docbulldog]

Thank you Niall, I am especially interested in the Pomi-t caps, so will start looking for those immediately.

[Zetabow]

I was diagnosed last Nov, 55 years old, Gleason 9, PSA 1386, Mets mostly in Legs, a little in my hips and spine. PSA down to 21 in 2 months and just about to start second Chemo this week. Pain has been bad, I get the normal ache in thighs but I also get these sharp stabbing pains, and involuntary muscle twitches (a little like when you body jumps as drifting off to sleep) Doc is little confused as he says it's unusual. I have a wonderful woman and family in my life who has my back, which makes a huge difference in dealing with this emotionally.