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Advanced (Metastatic) Stage 4 Prostrate Cancer - Need help/tips

simple-man
Posts: 7
Joined: May 2015

Dear Friends,

We are in Candada. About 3 weeks ago (around Mar 13, 2015) my dad had sudden difficulty walking, and pain while changing sides on bed. We took his to hospital. He was diagnosed with Advanced Prostate Cancer with the following details:

Age:75

Annual Physical Exams:all done every year including urologist PSA blood tests etc. No one ever said he has anything wrong or perhaps they just ignored/misread his reports etc. Don't know details....we are in Canada.

Life Style:Never drink alcohol. Does not smoke, Vegetarian; does not eat any meat, eggs, or fish but consumes milk and milk products.

Family History:No family history of cancer. My dad's dad lived health up to 85 years of age and my dad's mother liver healthy up to 108 years of age.

Cancer Type:Stage IV Advanced metastatic - already spead to his spine, liver, and lungs apart from prostate.

PSA:about 600

Treatment so far:

Two spine radiation treatments - he doesn't have back pain anymore after this and can move around on his bed. No other radiation treatment planned at this time.

Firmagon Hormone Injections - Two 120mg (total 240mg) and will be one injection 120mg every month from now on.

Dexamethsone - steroid pill

Chemotherapy (Docetaxel): Doctor wants to start chemo in few weeks because he said there was a study done that starting chemo along with ADT/hormone therapy extends life of Stage 4 patients by an average of 14 months.

Life Expectancy:Radiation oncologist said 6nmonths to 2 years, Urologist said 1 may be 2 yeras, Other Oncologist said 1 year. The Head Oncologist who now oversears/plans his treatment just said we have to wait to see how he responds to the treatment.

How he is doing:

He is still in hospital. He can stand up but can't walk yet. He has started rehab in hospital where the physio helps him wlak with the walker. He is improving very slightly but doen't know how long it will take for him to walk properly with walker. Right now foot placement is not good but physio thinks it will improve over time.

Need Help and Tips for what else can we do:

Apart from the above treatment, we have started

* the "Maple Syrup and Baking Soda (Sodium Bicarbonate)" 3 days ago using 1.5 tsp baking soda along with 4.5 tsp maple syrup in warm water.... TWO TIMES A DAY. Plan to continue this for about 9 days and reduce to 1tsp bakid soda twice a day.

* One Iodoral (Iodine and Potassium Iodide) pill - 12.5mg per day.....may increase it in future using actual Lugol solution....plan to take to 50mg a day i.e. 8 drops og Lugol solution 4 to 5 times a week. Will mis 2 to three days a week to give rest to Kidneys because Iodine takes out toxins from body via kidneys.

* I plan to buy Cesium Chloride from Amazon. I heard they balance the body pH. 

Q1:Should I add Cesium along with Baking Soda or it should be either baking soda or cesium chloride?

Q2:What dose (in mg) should we give him every day?

I am ordering ph strips to measure his saliva/urine PH soon.

Vitamins-Nutrients Questions:

I am reading on the web that many nutrients such as selenium, Vit D3, Vit-C, Multip-Vitamin, etc should also been given on a daily basis.

Q3:What are all the nutrients, minerals, and Vitamins that we should give him on a daily basis and in what dose?

Q4:What is the proper diet/food for my dad's situation?

What Else should we do to make him better and extend his life?

Please advise.

Thank you VERY MUCH for your time and help.

tarhoosier
Posts: 194
Joined: Aug 2006

The hormone+radiation+docetaxel is indeed the preferred combination for men such as this, IF he can tolerate the chemo therapy. If not then it can be a reduced dose or spaced in a longer time period. I think the head Onc has it right. The survival is entirely dependent on how he responds to these therapies. The more the metastases shrink and the lower the psa goes the better the prognosis.

Metastasis and spinal compression due to tumor is a very serious effect that must be avoided if at all possible.

The dietary and over the counter supplements are minor and treat the patient's mind and the spirits of the care givers more than they treat the tumor. The heavy hammers are what the doctors provide. And he needs the heaviest of hammers.

hopeful and opt...
Posts: 1999
Joined: Apr 2009

http://csn.cancer.org/node/293668

 

Additionally Selenium has a negative effect for  prostate cancer patients. There was a study , the SELECT STUDY done among 35,000 men to measure the positive effects of vitamin E and Selenium, however these vitamins were shown to be negative to the men in the study group and the study was stopped before completion

Old Salt
Posts: 478
Joined: Aug 2014

I am worried that these nutritional supplements will interfere with the treatment. Please discuss this with the oncologists and do not rely on unproven ideas you read on the INternet.

It's my opinion (!) that your dad should be eating what he enjoys.

hopeful and opt...
Posts: 1999
Joined: Apr 2009

Please let your Father eat what he enjoys.

 

VascodaGama's picture
VascodaGama
Posts: 2543
Joined: Nov 2010

I am sorry for your dad and the whole family. Unfortunately there are not many options to treat stage IV PCa patients. The combination of HT plus chemo manages to attack the cancer from various fronts which may prolong life but the side effects will obviously be greater and more care should be exerciced. The radiation in this cohort of patients is spared as a paliative way to manage the pain. Doctors will from time to time radiate those critical spots only. They cannot radiate the whole spreaded cancer. Firmagon will cause a drop in the testosterone circulating in his system which will aliviate cancer burden. The monthly injection is bodersome and may become painful at the place of injection. He can obtain the same effect with orchiectomy which is a simple procedure in cases like your dad.

We have seen some guys reporting in this forum before about similar stage IV situations. The majority have engaged in holistic treatments but with no success. Some supplements may provide some benefits but the intent is not cure only to help in sustaining the side effects from the prime therapy. Vitamin D and B12 are important.  It seems to me that your dad should avoid to the maximum any anemia condition that has caused death in some PCa patients using chemo. Medicines and supplements intereact so that I think it better you inqire with his doctor before taking anything.

The moment is not pleasant to the whole family and you want to give him the best and such would be to provide him confort and what he likes most. He knows well of your care and he surely is pleased with all of you.

Sincerely,

VG

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Simple,

I too am sorry about your plight. While I have not had late-stage PCa (I had Stage t2A-N0-M0 recently), I have had advanced lymphoma, which required a five-drug chemo combination therapy, so I know a bit about the chemo experience, and also nursed a friend to "the end" with PCa two years ago.  He did the newer, end-stage drugs Jevtana and Zytiga for castration-resistant, metastatic disease after all else ceased to do any good.  Normally these are perscribed only after Taxotere has failed, which can take a long time, but I have read where some guys are givent hese drugs early in the course of events. Originally, they were approved for post-Taxotere use, but are FDA approved for earlier intervention now, as I mentioned.

I became severely anemic at one point, as Vasco was describing, and had to go on IV (drip) iron for a period, so do watch for that. Virtually all doctors require a CBC at least twice a month for any patient on chemo anyway, so the medical team will monitor all of that stuff.

Late in the game, my friend developed severe, untreatable diaharrea from the Jevtana, which is a known side-effect of that drug. However he had had months of radiation years earlier, which later required surgicical correction to prevent colorectal bleeding, so his trac may have been especially vulnerable to bowel problems.

As most above have agreed, at this point dietary issues are irrelevant. Probably the best thing he can do regarding diet is enjoy the foods he likes.  From your description, his life-long diet was a made-in-heaven "avoid prostate cancer" diet anyway. My oncologist (with five Board certifications) told me to eat what I wanted throughout chemo.  It is no time to fret over meaningless nutritional issues, which have but minimal effect, even in healthy people.

I hope the remaining available treatments give him a lot of time, in comfort.

max

simple-man
Posts: 7
Joined: May 2015

Thanks for all the messages and help.

Sorry I couldn't respond earlier...was just trying to be with my dad all the few previous weeks.

Update: After 7 weeks in hospital, my father is finally home.

He has started walking with walker now 

His PSA test done last week shows that PSA has dropped from about 600 to 36 and hopefully it will drop further in another month or so. 36 is not perfect (supposed to be 4 or below) but it is way better than 600.

Doctor wanted us to start chemo on Mon Jun 1st but we have requested a two week delay so we can discuss/decide if chemo is even a good idea if we are going to start with cannabis/rso oil in few days.Our concern ismainly about chemo side effects and suffering. Thousands of cancer patients have mentioned getting better with RSO Oil. My understanding from various internet sites is that RSO/Cannabis oil works much better if there is no chemo with it. Even Rick Simpson says to avoid chemo. My only concern is if oil will benefit quickly since he also has prostate cancer spread to lungs (along with spine, ribs, liver, etc.) and what if it reaches his breathing/air pipe then he can have breathing difficulty and may need to be put on oxygen. Right now he is home and feels much better and his oxygen level is 98% or higher. He is eating fine too. He looks 100% better than 7 weeks ago when we took him to hospital and they found stage 4 advanced prostate cancer. He could not eat or move that time.

Doctor says chemo will help prolong his life by a year or so if done sooner than later, doctor doesn't want to wait 6 months or so because he thinks then there isn't much benefit from chemo if not done sooner along with ADT/hormone injections. Currently he is getting monthly anti-testosterone injection along with steroid pill, plus we are doing alternate treatments (mostly nutrition/vitamin etc.) as mentioned in my original post. 

Any thoughts or ideas will be greatly appreciated.

Thank you!

hopeful and opt...
Posts: 1999
Joined: Apr 2009

Dear Simple,

 
I am glad to read that your Father's PSA number has declined.
 
In my opinion your Father is faced with two choices; that is to treat, with the help of the best Medical professionals available to your Father, with treatments that may have chemo side effects among other negatives, or not treat, and make his life as comfortable as possible at this time. 
 
As I understand from you, your Father is interested in prolonging his life.
 
At the support group that I attend, there are men with stage 4 metastatic disease who have lived  for several years with the aid of medical science, and plan on living for even more. One of the men who is 51 now, tells that when he was diagnosed three years ago, the doctor , who diagnosed him, told him that he had six months to a year of life left. Fortunately he left this doctor, found a qualified Medical oncologist, who is effectively treating him, and is going strong, looking forward. There are lots of credible medical science tools for best treatment that are available to those with state 4 cancer, your father included. Basically there is not date stamp on life left for those who are diagnosed. Many live several years.
 
Cannabis is not an approved treatment for prostate cancer. In my opinion , and many others treating this serious disease which requires excellent,  coordinated medical attention with Cannabis is a JOKE! The time  spent using  Cannabis for prostate cancer instead of following your doctors recommendation is a detriment to effective treatment. Furthermore, I never heard of Rick Simpson before you mentioned his name, so I googled. Apparently he dropped out of school in the 9th grade, and spent his work life with blue collar pursuits. In my opinion he is less qualified than most to provide medical information. I don't understand how he can publish medical advise, " Even Rick Simpson says to avoid chemo". To me he is a charlatan.
I wish your Father the best
 
PS. It is important for family members, sons, brothers, and even cousins to be tested for prostate cancer, Say a benchmark PSA test at 35, and regular tests, starting at 40. A DRE is also recommended. Eat heart healthy; "heart healthy is prostate healthy"
 
Wish you the best,
H & O
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

I wholly agree with all hopeful and optimistic wrote, simple-man.

I have had two friends pass from PCa in the last several years.  Both lived about 13 or 14 years from initial diagnosis.  Your oncologist's estimate is about right for what happened with them, except that both lived closer to two years after beginning chemo  (they had both exhaused all then-available Hormonal therapies).  There are also now several drugs that prolong life after chemo has essentially failed, Jevtana and Zytiga.  One of my friends took both; the other passed a couple of years before those drugs were introduced.

Chemo is harsh, but side-effects vary widely.  Nausea is virtually non-existent with chemo for many years now; there are many drugs that can prevent it.  I did five extremely strong chemo drugs for six months for lymphoma a few years ago, and never had nausea once, due to the anti-nausea medications that the doc prescribed.  I made a lot of friends at the infusion center, and never heard of anyone having serious nausea.  I have been a regular at the Lymphoma Board for a few years now, and no one ever mentions nausea as an issue.  The idea that cannabis needs to be available to treat chemo-induced nausea is simply false, and has been for at least a decade, probably much longer. It is true (I understand) that cannabis will prevent or mitigate chemo-induced nausea, but numerous other medications (that contain no cannabis) will do so as well or even better.

What to do is your father's decision.  By everything you have written, it is true that he is near the end.  And, chemo for PCa is not considered curative.  It is a matter of deciding how far away the two of you want the end to be.  Choosing cannabis over medicine is about equivalent to choosing alcohol over medecine: it may ease pain, and perhaps could even enhance his quality of life in the near short-term, but it will not in any way fight the disease or prolong life.

max

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

I am aware of 1 study of cannabis extract given to mouse prostate cancer cells in a Perti dish. It was effective in killing many of those PCa cells. No other studies have been done sucessfully, however. No way would I suggest using cannabis instead of the standard treatments. A glass of wine, a cold beer or a vaporizer bowl of cannabis may well make you feel better though, which is not a bad thing in my humble opinion.

simple-man
Posts: 7
Joined: May 2015

Thanks for all your suggestions.

I never thought it will be so hard to make a decision.

At the end of the day the goal is to "prolong his life" and make it "as pain free as possible".

My biggest concern is that I keep hearing that not just chemo has serious side effects but also cancer that comes after chemo is many times more aggressive and generally is terminal especially for people in my father's stage. I have yet to find cases where PCa persons lived more than 2 years after chemo.

We have 2 weeks to make a decison along with our oncologist.

May be we can do the alternate treatments along with chemo, hopefully it will help a bit.

Btw, also found about these two suppliments:

Vitamin E (with Gamma - Triencol from Plam oil) - treats/kills prostate cancer cells.

4-MU (4-Methylumbelliferone) - treats/kills Advanced Prostate Cancer cells and stops them from growing.

It appears it is not easy to get these.

We are just desperate to do anything we can to help him.

Thanks again.

 

hopeful and opt...
Posts: 1999
Joined: Apr 2009

NIH-funded study shows increased survival in men with metastatic prostate cancer who receive chemotherapy when starting hormone therapy

 

http://www.cancer.gov/news-events/press-releases/2013/E3805

 

More

 

https://www.google.com/webhp?tab=mw&ei=ko1qVYHSLsO5sAWXkYKACA&ved=0CAQQqS4oAQ#q=how+long+can+prostate+cancer+patients+survive+after+chemotherapy

 

 "My biggest concern is that I keep hearing that not just chemo has serious side effects but also cancer that comes after chemo is many times more aggressive and generally is terminal especially for people in my father's stage. I have yet to find cases where PCa persons lived more than 2 years after chemo."

I wonder where you hear this false information?

Basically SimpleMan, not refusing medical treatment will give your Father an excellent chance of extending his life...the sooner the better......Refusing medcial treatment will not extend his life.

Hey, Simpleman.....it can't hurt to take Vitamin E with Gamma........it is simply a vitamin.......I don't know anything about 4-MU (4-Methylumbelliferone).....to be honest, from your posts, it appears to me that you do not want to  pursue medical treatment (mainly because of your lack of knowledge), and keep  coming up with different things to self-treat based on things you hear about or come across.......to be blunt you are not knowledgeable about treating PCa, and   pursuing alternative treatments, as you are, will not help your Father; it will hurt him. 

We know here that you want the best for your Father......so, please let the Medcial Professionals do their job. 

Become knowledgeable about PCa. Attend support groups...one organization USTOO , an international prostate cancer group sponsors local support groups and provides newsletter information.. There may be support group in your area. Google USTOO...I thing that is .org or com ; read books and internet searches...knowledge will be your power.

Best,

H

 

Old Salt
Posts: 478
Joined: Aug 2014

As Hopeful already pointed out, much of what one reads on the Internet has not been subjected to critical/scientific examination.

Your doctor team has made your Dad a lot better, considering his poor prognosis. Continue to listen to them. Work with them, not against them! And if the chemo proves too much of a burden to your Dad, he can stop it. At that point you and your doctor team can consider alternative treatments.

simple-man
Posts: 7
Joined: May 2015

My father will be starting chemo in about 10 days.

Thank you all for your help.

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...I would ask of they could switch him to Lupron or Eligard as those come in 6 month doses that won't require that monthly big shot in the stomach muscle. Firmagon doesn't give a 'testosterone bounce' - an increase right after the shot - like the others so they start us with that. 1 shot every 6 months sure beats 1 shot a month in my humble opinion.

 

Best of luck to your dad.

Old Salt
Posts: 478
Joined: Aug 2014

The chemo (docetaxel/Taxotere?) won't be easy on your Dad, but we hope that he will be able to cope.

simple-man
Posts: 7
Joined: May 2015

They are stopping the firmagon.

The oncologist said the next injection will be Zoladex and it will be every 3 months.

Thank you.

VascodaGama's picture
VascodaGama
Posts: 2543
Joined: Nov 2010

Combination of therapies in critical cases has shown higher benefits in the outcomes, when done together (at the same time). This principle against the more common sequential treatment (RP then RT then HT then Chemo and then Immunological) started to be credible since the publication of the preliminary results from the Stampede Trial (Systemic Therapy in Advancing or Metastatic Prostate cancer) that is on going (from 2005 to 2020).

Many physicians recommend treatments involving androgen-deprivation therapy (ADT aka HT) which have increased the period of remission. In combinations involving HT plus Chemo (your dad’s case) there is a tendency of increased risks due to the drugs interaction or body response (behaviour) due to hypogonadism. Nobody knows in advance what symptoms a certain patient will experience so that constant vigilance of lipids, etc, is crucial in the initial treatment period. Also, before starting the therapy one should also gather values to prepare a base line with which to compare future tests results to avoid false improvements. Advanced cases of PCa present other problems such as bone loss which should also be addressed. Your dad should have a dexa scan and add a bisphosphonate to the combination therapy if the situation requires.

Please read this about Chemo Therapy;

http://prostatecanceruk.org/prostate-information/choosing-a-treatment/chemotherapy

I believe your dad’s doctor has chosen a chemo drug that is already established in combination therapies (with performance results confirmed). Docetaxel (Taxotere) is one been used and it is in fact well established in the treatment of several other cancers since its Phase 3 and after FDA approval in 2004. More recently other chemo drugs (cabazitaxel, etc) have also proved to be effective (if not better than docetaxel in some cases) but I am not aware if they present similar results when used in combination therapies. I would recommend you to discuss with his doctor to get details of the treatment protocol and about possible side effects from the therapy, and on counter actions if things become too sour.

http://acsh.org/2015/05/initial-chemotherapy-plus-hormone-rx-extends-life-in-men-with-advanced-prostate-cancer/

 

Regarding the hormonal portion in the therapy I would recommend you to get a copy of an old book (2 dollars on Amazon site) but still the best that explains in “patient’s language” everything about the treatment;
Beating Prostate Cancer: Hormonal Therapy & Diet, by Dr. Charles “Snuffy” Myers.

You can also listen to his videos on the combination of drugs in this link;
https://askdrmyers.wordpress.com/2015/04/10/combining-drugs-in-cancer-care/

Also this on Taxotere;

https://askdrmyers.wordpress.com/2011/08/10/starting-taxotere-for-pca/

An interesting discussion on cancer and drugs in here;

https://vimeo.com/14051407

Diet and a change in live style are “tactics” important to counter the treatment effects. Physical fitness programs and proper nutrition are required when dealing with prostate cancer. UCSF got a publication on Nutrition & Prostate Cancer, which copy I highly recommend you to get here;
http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

 

Best wishes and luck in his continuing fight against the bandit.

VGama

 

simple-man
Posts: 7
Joined: May 2015

Yes, agree with all the tips.

My dad's doctor has chosen docetaxel along with HT.

My father is vegetarian and his diet is lentils/legumes/beans along with whole grain products, green salads, fruits, and cooked vegetables.

We now give him mix fruit juice daily using nutri bullet juicer.

We have limited refined sugar.

We also give him the following:

  • ebhanced multi-vitamin (kirkland/costco brand called premium performance multi)
  • iodine (lugol solution) 25mg
  • D3 5000 IU
  • Folic acid 1400 mcg (folic acid was doctor recommended), 
  • Buddha's Herbs Decaffeinated Green Tea Extract 400mg capsule containing 98 percent Polyphenols, 85 to 90 % Catechins and 50 % EGCG.
  • Goji berries
  • Bitter Apricot seeds
  • mix nuts

Thanks for all the info/links.

This is very helpful.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2655
Joined: May 2012

Simple-man,

A description of docetaxel, which is very routinely used against Stage 4 PCa, usually after HT has begun to fail.

http://chemocare.com/chemotherapy/drug-info/docetaxel.aspx

Most patients weaken fairly fast after the drug is begun (usually by the second infusion, which is also when hair most commonly falls out), so anticipate him being even more tired. The doc will be constantly monitoring all of his blood counts.  Recall that even after taxotere (the more common name for docetaxel) loses effectiveness, there are two or more follow-on drugs still available.

I hope he has many more good years remaining,

max

simple-man
Posts: 7
Joined: May 2015

Thank you!

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