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Is PSA falling too slowly?

moonlitnight
Posts: 52
Joined: May 2013

Hi all,

My husband was diagnosed with an aggressive (Gleason 8 4+4) form of PCa stage IV with extensive bone mets in February. His PSA was 32. He went on Casodex in early March and Firmagon in April. His last blood test showed a PSA of 0.33. I would like to see it lower than this. Can anyone with similar circumstances please let me know how long it took them to reach .01 or close? I am thinking of asking our oncologist if he would consider a triple blockade with Avodart or the like. My husband has become super fit since his Dx and has even gone off his low dose statin and BP meds. He looks the best I have ever seen and says he feels amazing. But the PSA level is of concern to me even though the doctors he sees all make comments like, "Well it's going the right way." We live in Canada and I'm thinking of getting a second opinion with Dr. Lam in Marina del Rey.

Kindly, MLN

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

Thanks for the post, I am in the same situation as your husband.  I was castrated in March.  My first PSA test in May was 9.08, down from 200.  Last week I got a new PSA and it was 2.08.  My Gleason was 3 + 4 = 7.   I no longer see my uro here as the Docs in Davao, Philippines seem to me to be a waste of time and money.  My bone scan looks almost all black, with the pelvis and spinal column all black.  Strangely, I had a MRI of the spine, and there is no evidence of matastases on the MRI.  I also have no pain and my bones are strong.  This may be due to Gerovital, (GH3) that I have injected for more than 40 years as an aid to combat Manic Depression.  Gerovital, with long term use, will mineralize the bones and make them hard.  My guess is that I have no side effects because the cancer is not eathing the bone enough to make it weak or to get to the nerves, but this is just a guess.

   I have looked long and hard at life expectancy for Stage 4.  I see six  months to two years as the first goal.  30% will make it to 5 years, and some to 8.  However, there is also X factor.  X factor is that in some people there is a process going on in the body that keeps the person alive, and if you survive for 5- 8 years, you may survive a lot longer.  My PSA has been high for more than 15 years,  and I may have already had the matastases for more than 5 years.

       I just went off a Ketogenic diet because I read that that diet can make the body acid and the acid can drain the bones of minerals, which is the last thing I want.  Also Ketogenic may not be effective with bone cancer.  I would also love to know more about your Vit. C treatment and how to take 30 grams a day, and what you husband does to stay in such good shape.  I am trying to gain muscle mass, but finding it difficult.  I am now on a high fat, high protein low carb diet, similar to Ketogenic, but not so radical.  I do not eat most grains, like wheat and barley.  I do eat Oats.  No dairy except Cream cheese and Whey protein.

thanks, love, swami Rakendra

moonlitnight
Posts: 52
Joined: May 2013

Greetings, Swami Rakendra,

First, I want to say that I have been reading your remarks over the past few days and applaud your attitude. Someone attacked you for suggesting they lighten up, but we cannot be walking around whining and stressing over a disease. I keep a saying in my mind, as does my husband, at all times: Worrying is like praying for what you don't want.

I decided to join this forum as it is more inclusive of those who explore all options, not just "evidence-based medicine." I have been a health writer for over 30 years, with clients in allopathic, pharmaceutical and naturopathic/ayurvedic/TCM modalities. They all have a role to play. For some, natural methods may work more effectively, for others, standard allopathic medicine, for many, a combination of many modalities, but NOTHING can beat the right attitude and having an open mind. As well as taking his ADT, my husband takes many supplements and we do a healing meditation daily as well as reiki.

B. is on a modified ketogenic diet (I make bread from bean and almond meal), no sugars (very little fruit) and mainly juices, veggies, and occasional salmon or organically raised hormone-free chicken. We don't go high on fats and keep protein low as any protein over and above what the body uses encourages cancer and an inflammatory state. B. also takes a product called "Alkala" to keep him on the alkaline side (or, more accurately, to ensure acidity doesn't occur). He also has a protein supplement for when he doesn't have fish or chicken...pea protein with a lot of green additives and a new whey from organically-raised cows that I just discoverd (I can provide names but I don't want to be chased off the board due to looking like I'm advertising).

We do indeed believe in the X-factor and I am going to be so bold as to suggest you have it!

B. was 245 pounds when he received his Dx. He is 6'6". He is now 195 by choice and works out with weights to retain some of his muscle mass. He was a very muscular and strong man so I think this is helping.  I will answer Vasco-de-Gama's comment a little later as he has asked some interesting questions. B's bone scan at diagnosis (he had an enlarged prostate and pain in his collarbone) showed multiple mets from the neck to one knee. The pain in his collarbone went as soon as he went on ADT.

B. makes up a large amount of the liposomal C every three days, using a large ultrasonic machine purchased on eBay, the soy lecithin and ascorbic acid. He stores it in the fridge and takes 50g daily. You are supposed to take it to the point of diarrhea (which hasn't happened to him, although he does have a lot of gas) and then titer it down to the point where the diarrhea stops.  He looked at several videos on You Tube to learn how to make it. It really is very simple. IV vitamin C has been shown to be of benefit with cancer in general. When taken in large amounts, it has a pro-oxidant effect in cancer cells, which some researchers say kills off the cells as they cannot survive in an oxygenated environment. Our naturopathic oncologist and functional medicine doc. concur with this. Standard medics say the jury's still out.  Any more questions, just ask away! With love, MLN

 

 

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

 

Moonlitnight (MLN)

 

I read your comments in the threads of this forum and I want to thank you for the plain and concise advices. Your attendance is very much appreciated.

The info provided about your husband’s case is scarce but I think you are an educated member and know well about the treatment he has started.
I wonder if he is asymptomatic. Can you share any details about the extent of the metastases?  Frown

It would help to know about the treatment protocol recommended by his doctor. Casodex plus Firmagon are just two blockers (in the ADT protocol) but the metastases in bone will require other specific targeted drugs that directly “kill” the cancer in bone such as Xofigo (Alpharadin) .  This drugs is recommended for HT refractory patients but it is also administered to none refractory guys. There is much information on the net about Alpharadin if you google its name. Here is a link to details, search for more;
http://paactusa.org/blog/alpharadin-is-approved-and-now-called-xofigo/

What is his doctor recommending in addition to the hormonal blockade, has he commented about any bisphosphonate?

 

The first thing I would suggest is that he gets additional blood test markers to confirm his real status. He will also need to care for bone loss (osteoporosis) that is prevalent in stage IV patients, particularly to the ones that will start taking HT drugs. He should have a DEXA scan in addition to an ECG (heart health) and lipids (diabetes), etc.

The decrease in PSA could be due to many things not just due to the HT drugs. The speed of the decrease from 32 to 0.33 ng/ml in 4 months could be rightful too. He needs to certify that the antagonist Firmagon is being 100% effective, by getting a testosterone (T) test.
Firmagon’s action is to induce castration levels of testosterone circulating in the body, lower than 0.20 ng/ml (20 ng/dL).
In some cases patients manage to get better results (lower levels) using instead an agonist such as Lupron.
Antagonists or agonists are taken to prevent the testicles from producing T (“closing down the factory”). Casodex is an antiagonist and “works” at the cell’s androgens receptors (AR), preventing these from absorbing T. They mimic the bio-structure of the real T gluing itself to the AR (mouth of the cancer). The drug Avodart you commented is a 5-Alpha reductase inhibitor that suppresses the production of DHT (dihydrotestosterone) which is a derivate of T but tenfold more potent.
The three drugs make part of what is called ADT3 (three blockade mechanisms) which is used by famous oncologists in advanced PCa patients. This could answer your query for a faster lower PSA but not all doctors (in particular urologists) believe in the ADT3 protocol.

In any case, I think that Dr Lam will give you peace of mind about what to do. He is a famous oncologist specialist in PCa. He works with the very famous Dr. Mark Scholz which is a “superman” in rescuing advanced cases of PCa.
You can read more about their work at the Prostate Cancer Research Institute in this link;
http://prostate-cancer.org/

 

Best wishes for you and your husband’s journey.

Welcome to the board.

VGama  Wink

 

moonlitnight
Posts: 52
Joined: May 2013

Hello VGama,

Thank you for your welcoming comments. I explained a little about my husband's diagnosis in my reply to Swami R. He had a PSA of 32 (six months after it was measured at 4) and some discomfort in his collarbone. After a DRE, he went for a bonescan which showed many mets in his skeleton. He went on bicalutamide and degarelex and the PSA began to drop. His T level is 0.2. So far, his oncologist has recommended a double blockade. No triple but I am going to ask next week, during our next appointment. He hasn't had a DEXA but one of my clients offers these so I will get him to have one. No bisphosphonates (I dislike these drugs immensely) but he is taking extra calcium and other bone building minerals with vit D, and vit K to lessen the likelihood of the calcium being deposited in his arteries.

As for alpharadin...just not comfortable with this. I don't think we have it in Canada yet. (Of course, we're also not "comfortable" with bone mets either.) The ADT3 is very popular with Dr. Myers. I'm not sure what Dr. Lam would say. Thank you very much for the link! Wishing you well. MLN

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

MLN

As far as I know from Dr. Lam's patients reports is that he recommends ADT3 and uses a threshold PSA level for remission of 0.05 ng/ml
This is a little higher than the threshold of Dr. Myers that is 0.01, but it is still very low if one considers the extension of bone mets. Dr. Myers used to incorporate other medications to the ADT3 such as Revlimid and Thalidomide if needed to get and keep the patient at his prefered remission levels.

In any case I think you will like to meet Dr. Lam and probably get still the opinion of Dr. Mark Scholz if you request that to Lam. Dr. Scholz commonly used ADT3 and as Myers he used the combination of other drugs (out of ADT3 protocols) to keep a patient in remission the longest possible after stopping ADT3 during a drug's Off period. His threshold was also 0.05 and he used chemo with HT such as Leukine, Celebrex, Cytoxan and Revlimid.

Unfortunately it seems that doctors in Canada and in Europe are not keen to administer 5-ARI drugs added to the ADT2 in PCa patients. I know of a case posted by the wife of a Canadian guy, were he has been refused the ADT3 by the famous oncologist Dr. Tannock (a PCa researcher) at Princess Margaret Hospital. They managed to get Avodart only after continuous insistence by his wife who was an avid member in prostate cancer forums.

A note regarding your above comment "....I can provide names but I don't want to be chased off the board due to looking like I'm advertising..."; I think that such would only happen if anyone would flag your post. However, you do not seem to be a sells woman and the survivors in this board are egger and very interested in reading about yours and others experiences in detail.

Best,

VGama  Wink

moonlitnight
Posts: 52
Joined: May 2013

Thanks for this input VGama...much appreciated. I am not at all sure why our oncologists appear to have an aversion to 5-ARI drugs. I can be pretty persuasive but I'm not yet sure of our oncologist's position. We see him Sept 16. Meanwhile, we are dealing with the strange situation of a sudden dramatic rise in liver enzymes. Our naturopathic oncologist (not the medical onc.) put my husband on metformin, not because his blood glucose was high, but becasue he believes it to be helpful. It was just three weeks prior to the test that showed the elevation in enzymes. One of them, the Gamma GT, was over 800. My first thought was gallstones due to the rapid weight loss. However, his billirubin was normal. The locum took him off the metformin and ordered an ultrasound. I am also thinking that it could be the combination of metformin with celery in juices and a quercetin supplement I give him. All three are downregulators of the CYP 3A4 pathway, which bicalutamide uses.  But I'm not an internist and I'm just guessing.

No, I'm not a saleswoman ;) Just a concerned wife.

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

I looked up  bisphosphonates and found Zometa.  I did not want to take Zometa because the mets have spread extensively already and I certainly do not have weak bones.  However, my Uro urged to me to at least try one treatment, which I did, and it was a disaster.  One treatment here is $650.  I went to the infusion room, and the Zometa was completed in exactly 12.5 minutes.  I became very ill with nausea, dizziness, very tired, sore arm and loss of apetite.  I was in bed for one week, and felt bad for 10 days.  I then did a very thorough study and found that Zometa should be infused for a MINIMUM of 15 minutes, and 30 minutes was much better, and a saline wash afterwards is a good idea.  Also, one needs to drink lots of water before and afterwards.  Also a Creatinine test should be given before treatment.  I was informed of none of this.

    After this, I went to the infusion room and talked with the head nurse about side effects.  He told me that patients usually were weak for up to two weeks after treatment, and some became ill.  My Uro says no one he treats seems to have any negative side effects, so I have no idea which information is accurate.  Anyway, I do not see my Uro any more.  Moonlitnight, I want to thank you for your mentioning  bisphosphonates because you and I agree, but our opinion seems to be in the minority.  However, I would advise anyone considering Zometa to be sure to understand what side effects may occur. I am always concerned to try to keep my immune system as strong as possible and to avoid treatments that may weaken it.  My feeling is that if the treatment is going to hurt my immune system, I am going to be very careful about accepting it.  You immune system is what keeps you alive and keeps fighting for you.  To damage this by medical treatments seems to me to be a misaken idea.

   Moonlitnight, thank you for all your posts.  You are giving the board a different perspective that comes from an informed and educated medical practitioner.  Many thanks and much love, Rakendra

 

PS:  my Hindi Name, Nirav Rakendra, means, "light of the full moon!!"

 

Also I want to thank Vasco.  You always have information that seems not available elsewhere.  The post about age affecting the PSA was important to me.

moonlitnight
Posts: 52
Joined: May 2013

Nirav...I like your name's meaning very much! That Zometa experience you had was not good. Drugs, while often needed, are highly toxic. We must do all we can to protect our bodies against the ravages of drugs as well as cancer. Have you ever heard of Dr. Thomas Rau? He is a very well respected MD who runs the Paracelsus Klinik in Switzerland. He recently did a talk here in Vancouver. He is having much success with various diseases, including cancer. Much of the info is in his book, The Swiss Secret to Optimal Health. Worth a read. He is very strong on dietary support and believes the body should be supported to heal the cause of disease, not just whacking back the symptoms. Re bones, working out the muscles supports the bones. Calcium won't enter the bone unless a stress is put on the bone, i.e a tensing muscle. Exercise is so very important, also for oxygenating the body.

Despite my long medical and pharmaceutical background, I read all books on alternative methods of healing. It is our responsibility as humans to expand our brains and look at all aspects of curing disease. When I see the word "quack" thrown out about someone, I immediately want to know why. This surely is part of the path to enlightenment. On another thread, I read your comment about duality and nodded my head.

 

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

MLN

I  am sorry to hear about the latest problem with risen liver enzymes. I do not know if metformin could cause the effect, but I am surprised for being given to your husband just because the naturopathic doctor believes it to be good in the treatment of his cancer.  Frown

This drug helps in reducing the “production” of androgens at the adrenal gland by decreasing the amount of sugar circulating in the body, and we know that the general cancers like sugar (ovarian cancer in particular). In any case, we also know that PCa strives mainly on testosterone which is manufactured from cholesterol not sugar. With such in mind probably his naturopathic doctor suggestion was not the proper way to care for his case.
His bad experience could also have been a cause from an allergy to the drug, due to the “war” on the enzymes between the chemicals requiring the same pathways at the same time. Probably he could lower the Casodex daily dose for a while. (How many mg is he taking?)
The best medicine to try lowering GT concentration is to avoid drinking blended “stuffs” particularly alcohol. Natural water may help in “cleaning” the bile ducts.

Quite often we read about patients that find out about other existing health problems when starting cancer treatments. This is in fact the reason why I suggested your husband to get tested before anything else.
PCa in bone likes to spread its “tentacles” through weak bone. Unbalances in osteoclast and osteoblast are not good when treating metastases. Alpharadin uses this pathway to reach and “kill” cancerous cells in bone. A positive DEXA scan may serve to get an appropriate opinion from his oncologist. Vitamin D is needed in the treatment for PCa. You could check for any deficiency.

Hope for the best.

VG  Wink

moonlitnight
Posts: 52
Joined: May 2013

VdG...thank you.  I am confused however. If metformin indirectly reduces androgen production by decreasing sugar, why is this a problem? His T is very low.  What do you mean by "blended stuffs"?  The blended drinks we make are vegetable juices, primarily using cruciferous vegetables and beets/turmeric/green tea/celery. All organic. No alcohol. My husband has been tested for numerous conditions. He is in the St. Paul's heart program and gets his lipids and triglycerides tested frequently. He does have a heart murmur. I know liver enzymes can be elevated as a result of CHF, however, the sudden rise seems incongruent. I discovered that he had not discontinued his artemisinen, as he should have done two months ago (he forgot to wipe it off his list). This should be used cyclically, if at all, and always the liver enzymes should be tested. He immediately stopped (two days ago). His vitamin D levels are perfect and he has had a Spectracell analysis of his blood. (This determines how much of anything the cells actually take in.)  He is getting a Dexascan in a week or so. I hope I am not being completely dense but I just couldn't grasp where you were going with the sugar/cholesterol thing...:)

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

"In any case, we also know that PCa strives mainly on testosterone which is manufactured from cholesterol not sugar."

This is a big eye opener for me, and I am very grateful.  I tried the high fat high protein low carb diet (Ketogenic) which is NOT apropriate for Pca according to Vasco.  So, now I eliminate all dairy, which I used to never eat, low fats again, and, naturally, no sugar.  Thanks, Vasco, you often save me from my own mistakes.  love, Rakendra

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

MLN

I am sorry if my post has confused you. It was not my intention.  Embarassed

I do not know if taking metformin is good or bad in the treatment of prostate cancer. Medscape got an article on the benefits of metformin in enhancing the effects of Casodex at the cancer cell’s androgen receptors. Their article is about an in vitro study done in several institutions in Canada. Here is a link to the publication;
http://www.medscape.com/viewarticle/774871

I am also aware of a study done to certify the effects of metformin capabilities in extending life in diabetic patients with PCa. Here is a short abstract published at the JCO. Theydo not comment on the side effects experienced by the patients;
http://jco.ascopubs.org/content/31/25/3069.abstract

There is also a running clinical trial at the NIH to verify any direct effects of the drug  on cancer cell proliferation and apoptosis. Here is a link to the trial;
http://clinicaltrials.gov/show/NCT01433913

Probably your husband’s naturopathic doctor has participated in one of the studies and saw good results/experiences in treating patients with the drug, and for such he has advised to take the drug.
However, if the purposes in taking metformin was to lower the testosterone, then Firmagon was enough and a better choice. Your husband’s low T is due to the chemical castration. It has nothing to do with the adrenal gland. In any case can you share more details about the drugs/medications and ADT protocol your husband is taking to care for his illness? 

Regarding the blends he is taking, they may be very good. But I think it better that you get the opinion of his oncologist overlooking his HT protocol. Food also interacts with medication so that one should care for timings (which are taken firstly or how far in-between). This could avoid the “war on the Enzymes”.

I can see from your writings that your husband is in good hands. The listed tests you describe are super and he couldn’t have better. When visiting Dr. Lam take a file on everything to get his opinion. You could send him in advance a copy of the treatment chronology and all tests results so that he would have time to investigate any thing in detail and probably order any particular test before you get to his office. I think that Scholz would do it.

Best wishes for his journey.

VGama  Wink

moonlitnight
Posts: 52
Joined: May 2013

Thanks so much VdeG. Very useful. I hadn't read the first link to metformin study.

My husband is on both Casodex and Firmagon, Casodex 50 mg QD since March and Firmagon since April.  That is all, aside from all the supplements like green tea, turmeric, black seed oil, quercetin, Avemar, Dipan-9 and apricot pits. The naturopathic oncologist (who knows and interacts with the medical oncologist) was going to review all the supplements but didn't, so we are following up in a couple of weeks. We have our juices well away from his meds. I am convinced it is the artemisinin and will let the oncologist know this, as we'd like him to get back on the metformin.

I will get in touch with Dr.Lam. Thanks again for all your wonderful support. We do so appreciate it. Sending you a hug from afar.

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Moonlitnight (MLN)

You are welcome. I and the many survivors also appreciate the info you are sharing. I hope your husband manages to get back to normal (lipids) levels the soonest and that his PCa treatment continues to knock down the bandit successfully.  Cool

I am very interested in knowing details about the malaria drug Artemisinin. Can you provide some info on your husband’s experiences with this wonder?
How did he get it, why and how is it administered?
Did his doctor comment about any restriction due to interaction with other drugs or food?
Is there any recommendation on the mg (power) to be taken or any defined period/schedule for Artemisinin?
Was the drug administered to care for his prostate cancer?
Do you know if there is any recommended sequential (after HT but before chemo, etc) to take the drug?
Which effects had your husband experienced that could be associated with Artemisinin, in your opinion?
Where has he been treated?

Best regards,

VG  Kiss

moonlitnight
Posts: 52
Joined: May 2013

Hi VdeG,

I am rushing in and out and will answer more later. Basically, I spotted this study http://integratedhealthclinic.com/assets/byCancerType/Prostate/1-Artemisinin%20and%20Prostate%20CA%20Apoptosis.pdf  and ordered some artemisinen capsules online. At the time, I believe the naturopathic clinic we go to was dispensing it at their pharmacy. I looked it up on Amazon, where it was less pricey. When I mentioned this to the naturopathic oncologist who runs the clinic, he said that he wouldn't recommend it (yet it is in his resources links under PCa, so I am puzzled). I will ask him directly when we see him in 10 days. At this point, B. had been on it for a month. I advised him to stop taking it but he forgot and continued for another two months. You are supposed to get your liver enzymes checked while on it.  Info as to how to take it (away from food/witha meal/at night/etc.) is lacking.

Since he is taking many supplements, it is impossible to pinpoint which, if any, is making a difference. If you go to iherb.com, you can read a little about Artemisinen as well as buy it. It is less expensive on Amazon.com.  The research I did on it did not suggest any contraindications. 

http://www.ncbi.nlm.nih.gov/pubmed/19017637

http://www.dryarnell.com/?p=402

Of more interest to be at the moment is Black Seed Oil which is derived from cumin and contains thymoquinone. Some very interesting research... although it's in vitro.

http://www.sciencedaily.com/releases/2010/06/100601162256.htm

Cheers, MLN Kiss

 

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Many Thanks Moonlitnight for the info.

Kiss

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