Advanced Prostate Cancer
5,229 members4,900 posts

A wife's introductory post

EliasJ is my husband and in December of 2015 he was diagnosed with Advanced Prostate Cancer - pT3BM1NO/Gleason 4+3=7. His PSA level then was 1,142 - a shocking number. He was totally symptom-less until a couple of weeks prior to official diagnosis. Because he was declared as being beyond surgery and radiation, the monthly injection of LupronDepot was prescribed by his urologist plus the daily med -a generic of Casodex and the Tamusolin (sp?).

I put him on an all organic diet, eliminated the red meat, reduced greatly the amount of chicken, increased the fresh vegetables and fruits, juiced fresh organic carrots daily, incorporated meals from The Oil-Protein Diet Cookbook by Dr. Johanna Budwig and added a multi-mineral & Vitamin Supplement called Cellect.

Three months after diagnosis, his PSA level dropped to 30 and 6 months later to 6.9. Yes, we were all elated. Can't say exactly what contributed to the drop - was it the combination of meds & diet? Who knows? But my beloved husband threw caution to the wind and slowly but surely kissed the diet goodbye. And I completely understand why. Probably would have done the same myself.

Late 2017 he became "resistant" to the Lupron and was referred to an oncologist. Xtandi was given a four month try. Nothing. PSA continued to climb while on the Xtandi so oncologist switched him to Zytiga. Oncologist said if Zytiga has no effect, then the next step is chemo and that scares me.

My dad was also diagnosed with prostate cancer around the same time my husband was and his PSA then was 432. Dad lives in Europe and has been on an ADT protocol off and on since diagnosed. Recently his doctor added an Amino Acid Treatment to the ADT protocol. His PSA is now below 1. Needless to say, I am now reading Amino Acid articles and studies (which studies are not written for the layman). Maybe, just maybe, I will glean something useful.

Thank you.

43 Replies
oldestnewest

Don't let chemo scare you. Been there, will go back if necessary.

6 likes
Reply

Agree with that 100%

4 likes
Reply

Agree completely. And the love from his wife should be seen as a major factor in his PCa life to date. We'll done.

Reply

I shall try not to be fearful. Thank you. Hope you don't have to go back.

1 like
Reply

The word “Chemo” puts fear in the heart of man,and women I’ve heard many say “ I’ll never do it”. I’ve yet to partake.. nothing to look forward to. Many men here have had chemo with great results and little side effects.. I personally believe that all cancer treatments have mild to severe side effects.. your diet is good . He must walk or exersize any way that interest him. hopefully he will have someone close to him to keep him moving and active.. It’s normal to have fear of these scary terms and options.. I also was diagnosed 4-2015.. non- op, but did radiation and continue ADt.. I admire your love and astute interest in dad and husband.. I’m a newbie here relatively speaking. Drs need to determine.. but if needed chemo is fighting fire with fire... get him back on a good diet .. don’t give up on healthy eating..

Reply

Thank you for being a caring caregiver!

8 likes
Reply

Salud Yost! .....good to see your smiling face back again !

Reply

Sorry you have to be in this group, but glad you found us. You'll find a lot of knowledge, experience and support here from the fellow survivors. We've all heard the people who say: "I have no idea what you are going through." Nothing against those people, but we really need the people who say "I do know what you are going through, because I am going through it too." That makes a huge difference for me.

It's unfortunate that your husband isn't getting a good response the Androgen-based treatment Xtandi. He could have a mutation such as AR-V7 that's causing it. One time I was talking with my Medical Oncologist about Castrate Resistance and mentioned AR-V7. She said "Yep, that's the culprit".

I do agree with your doctor about going to chemo next if Zytiga doesn't work. Like many people, I was afraid of chemotherapy and at first refused to do it. But then I did some reading on it. I decided to do it early on although I could have just done ADT alone. I'm really glad I did it. Many of us feel the same way and would do it again if we had to make that decision over again.

Most people tolerate the side effects well. It kills the full spectrum of cancer cells too, not just the ones that are sensitive to male hormones.

Good luck with your treatment. Let us know how he is doing. Make sure to take care of yourself too. It's easy for caregivers to forget that.

5 likes
Reply

Thank you. Did not know about AR-V7. I shall pass on your story to my husband. So glad you are doing well.

Yes, there is this sense of responsibility caregivers take on and when the patient is not doing well, some kind of guilt hits. I'm the fix-it kind and I tend to focus on that which needs 'fixing' and try to do it like NOW. So when things don't work out, as life happens to be at times, it is like - where did I go wrong. But I know better. Thank you for encouraging me.

God bless you.

1 like
Reply

The patient often feels the same way, like they must have done something wrong. Why else would they have advanced cancer when others around them don't? Without realizing it, other people can easily reinforce that by talking about how they have all these diet, supplement and exercise regimens that have kept THEM from suffering the same fate as you. I know some people like that. They feel they have to right to preach to you because obviously you must be eating the wrong foods, taking the wrong supplements or none at all, etc. I had a long conversation with one such person about my cancer and near the end of the conversation he said "Well, I'm planning on living for a long time!" with an air of superiority. This guy is in his mid-70s by the way.

2 likes
Reply

We all have an expiration date. God, as the Author of Life, is the One who sets it. We just don't know when it is. Who knows, I may pass on before my beloved cancer-stricken husband does. You just never know but no need to fear it either.

Sorry if the diet and lifestyle came across as preachy. Didn't mean to.

I do hope you live for a long time!! Have fun!!

1 like
Reply

You didn't come across as preachy. I just think people who are doing a lot of these kinds of things need to have some sensitivity toward those who aren't. There isn't much solid evidence for many of the things that people are trying. My philosophy is that doing things that contribute to overall health is always good. However diet, supplements, etc. are not treatments for cancer. This is where I see the problem.

I've had several people tell me I could cure my cancer with the right diet and supplements. Many of these people have nothing to lose like I do. A good friend was doing these "alternatives to treatment" as I call them. He passed away a few months ago, having received no real treatment for his cancer and bilked out a ton of money. His wife now has to deal with a dead husband and a lot of debt.

Reply

I totally get it. The meds are not working for my husband and he has decided that he will not do the chemo. This could change when time comes. Meanwhile I will continue to try to provide healthy meals plus vitamins & supplements for general overall health.

I do not know what cures cancer and I really doubt "health professionals" actually do. I have always held that medicine is guesswork at best and this was developed when my firstborn was diagnosed hours after birth with some "airway disease". Since then it has been Exercised Induced Asthma, Respiratory disease, Reactive airway disease, etc., etc., etc. He has been hospitalized multiple times over the course of his 34 years of life and still the doctors guess with meds and or combination of meds. He has been close to death several times because the meds do not work.

There is an article written by Dr. Fred Eichhorn, ND title "1899 Diet" which I find rather interesting. His personal experience with cancer includes being diagnosed and sent home to die with Stage 1V pancreatic cancer back in his early to mid 20's.

My uneducated opinion: The body is a complex interconnected system that mere humans can only take an educated guess at how it functions. We have so many medical specialists who fail to treat the body as a whole.

Yes there are charlatans everywhere. I'm sorry about your good friend.

Reply

The plans of mice and men.

Reply

I agree with what others said about Chemo,There are some things to watch out for. Icing fingers and toes during infusion,to prevent nueropathy and sucking ice cubes to save taste helped me a lot. I am now on my 15th chemo over the last 14 months. I will add that having genetic testing may be helpful in pinpointing certain mutations that may respond very well to targeted meds for these mutations. I wish you the best, Please find out all you can about those amino acids your Dad did. Thank You for being a wonderful caretaker.

Dan

5 likes
Reply

Dad emailed me the list of amino acids & vitamins: L-Lysine 1000mg; L-Proline 500mg; L-Argenine 1000mg; L-Lucine 450mg; L-Carnetine 400mg; N-Acetyl L-Cystein (NAC) 600mg; Vitamin C 2000mg; Vitamin D3 3000mg + Vitamins K1 & K2; CO-Q10 200 mg + Selene; Curcumin 3000mg; Broccoli extract - sulphoran; Astaxanthine 15 mg; Berberine 1200 mg; Green tea polyphenol capsules. He takes these at each of his two meals - 9AM & 6PM and in addition with his evening meal he takes a multivitamin & mineral liquid (a German product), milkthistle extract to detox liver; Gingko to overcome cognitive ADT related problems; Iodine tablet once weekly; Chorella tablet once daily; and probiotic tablet with 6 essential bugs for the digestive tract before bedtime.

He does not smoke nor drink alcohol and his sugar intake is minimal at most; does not eat red meat but eats fish and poultry; drinks plenty of clean water (as he puts it); snacks on fruit and nuts and eats organic (or as he calls it "bio") when available.

My dad will be 91 years old this July.

Hope this helps and thank you for your kind words.

2 likes
Reply

EliasJ, my mom will also be 91 this September . Good luck to them both..

Reply

Amino acids are interesting materials/foods to be investigated.

Try----www.aminoacid-studies.com/research/

Or the named articles:

1] Proteins that deliver Leucine to prostate cancer cells are therapeutic

2] Starving prostate cancer cells of the amino acid leucine slows growth

Might find some reading worth while.

Nalakrats

4 likes
Reply

Thank you. I am reading up on amino acids. And starving the cancer cells is, as Martha Stewart would say, A good thing.

1 like
Reply

Please join our wives community too. healthunlocked.com/prostate...

1 like
Reply

Thank you, Darryl. May just do that.

1 like
Reply

Do you know what amino acid treatment your Dad is on

Reply

Hi Eliasj,

I'm sorry your husband and father are going through PC it must be very hard on you. I understand your fear of chemotherapy. As my husband was diagnosed in 2010, chemo was one of the treatments I was so afraid of. He started ADT treatment with Zytiga and Prednisone in September 2017. January he decided to do chemotherapy. He's done 4 out of 6 and thank God he's doing well so far. I wish the best to your husband and father. A hug to you💛

Sincerely,

Erika.

4 likes
Reply

Thank you for your encouraging words. I lost my mother a year ago and I am in bit of "slump" so thank you for the hug!

1 like
Reply

I can relate.. mom is 91, dad shuffled off to buffalo 21yrs ago. We had made peace. He told me a month before he died that he loved me for the First time in my life . I’m very grateful for that. My dad is still my hero... He’s part of me.. he had PC also.. I didn’t know then what he was going thru with PC back then. I do now.. he was tuff ,child of the depression and he was taught to never show emotions, he never complained. God has blessed both your father and your husband with you. Iconography worry about these two gentlemen because they have you, looking out for them.. But please take extra time on yourself needs and health. You know the nature of APC already.. it can be a grinding mill to patient and spouse.. In a few months you husband should gain the upper hand..hang in there..

Reply

Hi, my husband has aggressive prostrate cancer too. He was first diagnosed almost 10 years ago at age 52, now 62 it looks as if it has recurred and possibly spread. We will have our diagnoses and treatment plan the 10th. Wish we were in a different boat together. Keep us posted about the aminos, I’m curious to hear. I also thought I heard in Europe they treat prostrate cancer by giving you testosterone?

3 likes
Reply

So sorry to hear it is back. I will certainly keep him in my prayers.

Yes! Me too - wish we were in a different boat!

I posted the list of the amino acids & vitamins my dad is on in my reply to 'gusgold' and since I have never participated on any kind of forum, I do not know if replies to individuals posted for all to read.

1 like
Reply

My husband too was diagnosised w prostates cancer .i pray that there are new cures each day .you are already by your husbands side thru all these treatments and you’ll do the same as he goes thru his various chemo treatments as I was to my husband .i still find it hard to imagine my husband Larry has been gone for a year and half this month .we fought for 6 years .never give up hope.everyday is a gift.

4 likes
Reply

hugs

2 likes
Reply

Thank you so much. I feel your loss. I am still getting over losing my mom. She passed one year ago and I miss her so much. I will think of you during our battle and I, too, hope for a cure.

1 like
Reply

God bless you ! Love never stops... peace to you..

Reply

Me, 61 stage 4

Eliaj...I'm trying to understand this "cancer" and why it's sometimes more aggressive ...It would help me (and I believe other readers) if everyone who posts...gives the age of the person they are talking about...or their age if they are contributing for themselves. As I try to weigh decisions on diet, exercise, survival...I find it more relevant to compare myself to people closer to my age. I tried to deduce your husband's age...from your comment and I am guessing he's in his 50's or very early 60's...That being based on the fact that YOUR father is still alive...and having Prostate cancer (at the more expected time) in his 70's or early 80's. Good luck with both your husband's and your father's treatments. ~~John

2 likes
Reply

Hi. I'm the wife and the daughter. My husband, EliasJ, will be 68 this month and my dad will be 91 in July.

My husband finds it difficult to adhere to a healthy lifestyle whereas my dad is committed to one.

Current medical thought & treat of cancer is as a genetic disease but others see as a metabolic disease (Dr. Thomas Seyfried) and yet others as something gone haywire at the DNA level (Dr. Fred V. Eichhorn, ND - National Cancer Research Foundation). My suggestion is to research for yourself - not an easy task.

I think Hippocrates stated that food is medicine - you are what you eat - and that health begins in the gut. He also stated: Do no harm, yet here we are treating cancer with chemicals and being exposed to them in our everyday living. So, I suppose, we attempt to minimize our exposure ? and commit to eating real food instead of fast food or processed & junk food ?

Before my husband was diagnosed, I viewed the docuseries - The Truth about Cancer - A Global Quest and after he was diagnosed I researched alternative treatments - mainly with diet and supplements. Also gleaned from various books about prevention and treatment. Have to admit it was information overload. I implemented much of it after discussing it with my husband and deciding on the diet plan.

Went as much organic as budget allowed - including detergent and toiletries and expanded my vegetable garden to provide organic cancer fighting vegetables such as broccoli. He quit the smoking, the eating of junk food, the sugar and was committed to the diet plan.

His urologist warned us in the beginning not to expected the PSA level to drop significantly since it was at 1,142 when husband was diagnosed. Well, three months after diagnosed it dropped to 30. Needless to say, urologist was elated. 6 months later, PSA dropped to 6.9. It was then husband threw caution to the wind and little by little returned to former lifestyle. Now, I can't prove the diet did it. But I bear in mind what the urologist said in the beginning. Yes, husband was on the LupronDepot injection and the Bicatulamide. But is it sheer coincidence that when healthy diet was abandoned and husband started smoking again that he became ADT resistant? I don't know and most likely will never know. Nor can I prove anything.

I just hope the Zytiga will turn things around for us. And I shall continue to pray.

I wish you the very, very best.

Reply

I went through 6 rounds of chemo as my first line of treatment along with lupron and did fairly well. Don't let that scare you. I continued to work full time and did not affect any of my decision making at work or in life general. Fatigue will be your biggest adversary. It's been 13 months since diagnosis and my PSA is still very low. I hope it continues that way for many years. I would definitely go through it again if needed. Keep us posted.

Nick

3 likes
Reply

Very strong Nicnatno!

1 like
Reply

Do not fear chemo! It is the only way to kill metastatic cells traveling in your vascular and lymphatic systems. They will congregate and multiple at a distance site and develope metastatic lesions.

I realize that water under the bridge has passed by, however, think about what can be done to kill and reduce these little bastards rather than palliative treatment. I believe that there is a direct correlation with the amount or scope of disease and body wellness. Think about this: Chemo is poison. Since 1978, the medical research profession knew how to kill cancer. The trick was to kill the cancer without killing the patient with the treatment. In some cases, Dosage is still being worked on. However, is it not better to take chemo when the body is strong and the tumor burden is minimal; rather then relying on chemo as a "last" available treatment? Once the body is weakened and the tumor burden is increased or largely involved, then the last ditch ususlky results in failure.

I do not mean to scare or upset you.

Your husband's treatment is pretty passive. Me? I saw a Medical Oncologist as soon as my PSA went from 6.8 to 30.2 all within a year of primary treatment. Find a Prostate Cancer specialist and, IMHO, a surgeon is not the right guy. Underwent a chemo trial fourteen years ago. Able to stop Lupron eight years ago and still remain undetectable today.

I have no doubt in my mind that if I had chosen the "recommended treatment" route 14 years ago, I would be pushing daisies. Please try to stay proactive. I wish the best for you and your husband in his fight against this bastard.

GD

4 likes
Reply

I actually think that husband was pretty much "written off" due to level of PSA at first diagnosis - 1,142.

I shall remain proactive. Thank so much for the encouraging words. I wish you the very best.

Reply

Sorry you have to be here , but don’t fear the chemo. Stage 4 Mets for me August 16. 6 rounds of chemo with a white blood shot ,followed by lupron and Xgeva shots monthly . Feeling pretty good and the treatment was not bad except the shot for the blood . Let the doctors work .

2 likes
Reply

Wow. Thank you. I am encouraged.

1 like
Reply

Sorry to hear about your husband. I was diagnosed August 2015, stage 4, gleason 9, with bone mets, PSA 78 with no symptoms. My PCP referred me to urologist who refered me to oncologist. My oncologist took an aggressive approach, Lupron and recommended chemo. I didn't want to do the chemo, so I went to another oncologist for a second opinion, and he recommended the same treatment. My wife told it was either chemo or death, my choice. I did the chemo. My PSA dropped to .11. My doc also had me do the provenge treatment. My PSA stayed low till about 6 months ago when it started rising. When it got to 2, my Onc put me on zytiga plus prednisone. My PSA is .8, and after my appointment tomorrow hope the blood work comes back with a lower level. Bottom line, the chemo was not as bad as I thought. My parents went thru chemo and it was awful. Cancer treatments have come a long way since my parents. I am 69 years young.

Chuck

3 likes
Reply

Thank you. I shall keep this in mind. Appreciate you sharing your story.

1 like
Reply

Thanks for sharing your story. I'm interested to find out more about amino acids. By the way, I had chemo last year and it didn't help me much, but others have done very well.

Reply

Hello Paulofaus. My dad emailed me the list of amino acids & vitamin supplements he is currently taking. He takes them 2x daily with his 9AM & 6PM meals. He does not eat red meat, processed nor junk foods. No alcohol, nicotine and reduced sugar intake as much as is possible (sugar is found in almost every food nowadays).

Here's the list: L-Lysine 1000mg; L-Proline 500mg; L-Argenine 1000mg; l_lucine 450mg; L-Carnetine 400mg; N-Acety L-Cystein (NAC) 600 mg; Vitamin C 2000 mg; Vitamin D3 3000mg + Vitamin K1 & K2; CO-Q10 200 mg + Selene; Curcumin 3000 mg; Broccoli extract-sulphorane; Astaxanthine 15 mg; Berberine 1200mg (necessary for proper curcumin absorption); Green tea poolyphenol capsules. He also takes at night: a multivitamin and mineral liquid potion (as he calls it & it is a German product); Milkthistle extract to detox liver; Gingko to overcome cognitive ADT related problems; Iodine tablet once weekly; Chorella tablet once daily; and a probiotic tablet with six essential "bugs" for the digestive tract before bedtime.

I am currently trying to read through articles & the one book I recently purchased regarding cancer as a metabolic disease. The purchased book is by Travis Christofferson, MS, titled: Tripping over the Truth How the Metabolic Theory of Cancer is Overturning One of Medicine's Most Entrenched Paradigms and I purchased it after listening to Dr. Joseph Mercola's interview with Dr. Thomas Seyfried. It is based on Dr. Otto Warburg's work on cell respiration which Dr. Johanna Budwig also addressed using flaxseed back before Hitler's time.

Dad has always thought of cancer as a metabolic disease. By the way, he will be 91 years this July.

Wish you the very best.

Reply

You may also like...