Am I at the end of life? Chemo failing. - Advanced Prostate...

Advanced Prostate Cancer

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Am I at the end of life? Chemo failing.

abmicro
abmicro

Carboplatin failed. PSA doubled in 3 months to 36. Lots of pain. Have appointment with City of Hope for trial options. Will bounce off another oncologist at Mercy. Current oncologist does not want me on cabazataxel because it caused bladder bleeding from radiation cystitis after 2 rounds, and he tried it twice. Started hyperbaric oxygen to heel that and dont have bleeding anymore.

Cabazataxel worked the best before but wont do it. He is adding in Paclitaxel with Carboplatin at lower dose and going every 2 weeks instead of every 3. Hope it works. Very afraid now. Any ideas?

27 Replies

Will you be seeing Tanya Dorff at COH. She has a few really promising clinical trials.

Which Tanya Dorff trials seem most promising to you? Bite? Car-t? Any others?

I think she has 2 BiTE trials (AMG 509 AND AMG 160) and 2 CAR-T trials (PSMA and PCa Stem Cell Antigen).

Using Google. I had a brief look at what was said about 2 BiTE trials (AMG 509 AND AMG 160) and 2 CAR-T trials (PSMA and PCa Stem Cell Antigen).

I could not understand any of it.

In your own words and in your own time, what exactly is the therapy method that is being trialled?

As you may have read inn my most recent posts to this group. noticed, I have had 6 x Lu77 infusions over a 2 year time since Nov 2018, and Theranostics Australia have just refused to give me any more Lu177 because of the uneven PsMa avidity found in my bone mets last 4 November with PsMa avidity ranging from1.6 to 10.6, and because I am not an expert, I am left to guess that they think some bone mets would never respond to any more Lu177 at any time, and they may have good reason to say that, because Pca can be prompted to mutate by the stress upon it when its challenged by ADT, chemo, or nuclides such as Lu177. But none of this was explained in the email telling me I could not have any more Lu177.

So I am looking out for some new treatment to bash down my Pca and allow me to live a bit longer.

Ra223 comes to mind, and seems to be easily available here in Australia and may be best way to go because my Psa is low, > 7.9, and it may work well on mets with varied levels of PsMa expressions, and because Psa is low it means I I may get good result that is better than where a man has a Psa of 79, or790, ie, with much larger bone lesions than I have.

I cycled 82km last Sunday, and at very good average speed, and with no Pca pains, so I ain't really very sick, but I don't wish to dither about and do nothing about Pca, or else I would end up seeking treatments when Psa has gone high and getting any good result with anything becomes unlikely.

The fact is that Lu177 seems to have zapped all lymph node mets, and many bone mets, but there are a few bone mets that are a real worry for near future.

It cost me usd $42,000 to achieve some lessening of my Pca.

It will be awhile before my local oncologist gets the letter of refusal to treat me any more from Theranostics Aust. I'll be seeking an an appointment sooner than presently scheduled.

I need more opinions.

My oncologist is a good man, but rushed off his feet treating so many cancer patients he may not have time properly seek out some expert who is more aware of what happens when Lu177 is thought to be unable to work any more, but with active mets still present.

I had a good day in shed soldering up some electronics.

And while I feel storm clouds have gathered with Pca, I will continue to live well as I know, until I cannot.

I much enjoy the discussions here, I enjoy cycling 200km a week, I enjoy some creative electronics, and I enjoy company of my friends.

All the best Allen, and to all here....

Patrick Turner.

If Lu-177-PSMA no longer works for you, it is probably because your remaining cancer cells are the ones that do not express PSMA. In that case, none of the BiTE trials will be useful to you because they attach to the PSMA. One of the CAR-T trials (the one that attaches to prostate cancer stem cells) may be useful. CAR-T is a super-activated super-activates your own T cells that have been edited to include a specific molecule that is attracted to a protein on the surface of those cells.

The reason they do not want to give you any more PSMA-targeted therapy is probably that your cancer is now heterogeneous with discordant expression across your metastases. Any further destruction of PSMA-expressing cells can make the cancer even more aggressive:

prostatecancer.news/2019/12...

If you have no visceral metastases and your blood work is good, Xofigo may be worth a try.

Thanks for your input. I should have realized from reading that if PsMa is involved in any way to target non Lu177 types of treatment, then that alternative treatment would not work. Theranostics Australia would have good reasons to not treat me any further right now. They may have assumed I would not have understood any reason given for not continuing because from my perspective, but there did seem to be enough hot spots of PsMa expression in my last PsMa scan on 4 November. I'll read that link you sent.

Time to head out for 60km bike ride,

Patrick Turner.

abmicro
abmicro in reply to Tall_Allen

did lu177 in a trial and lu cky to get drug. did 6 rounds. mild response. it is the cabazataxel he doesnt want to do anymore because of bladder bleeding. That one combined with carboplatin was working great.

HYPERBARIC OXYGEN fixed the bleeding after 17 roundsbut have 25 more rounds to go to make sure radiation damage to bladder is fully healed.

I am assuming you have gone through all of the ADT drugs? If so the only other thing I could mention is sodium Dichloroacetate as a last resort.

abmicro
abmicro in reply to Magnus1964

Never heard of that one in my 18 years of battle. Will notate and bring up in my dr meetings.

Magnus1964
Magnus1964 in reply to abmicro

It is not a prescription drug. Used to be used to treat lactic acidosis. It is a drug that has been repurposed. discovered by a Canadian university to affect prostate cancer. There are a few clinics in Canada that treat prostate cancer patients with sodium dichloroacetate. Most doctors shy away from it. You can buy it on Amazon. Be careful with the dosage. It is a six week treatment schedule, and can cause peripheral neuropathy.

You have had quite a run---one that I would envy! Your long run indicates there was a lot of Hormone Sensitive periods of time, in your journey--and this could indicate that you might do well with BAT--or one of the subsets--being High T alone, BAT, as defined by John Hopkins, or the new subsets, where on BAT they use Xtandi, Chemo, or even a PARP/or Checkpoint inhibitor to sensitize the cancer cells for the killing action of the High T portion of the treatment to break the Double Strands of the DNA in your cancer cells. do not see evidence of you being Gene Mapped--->as I call it, to determine if you have active Gene Mutations, that might have targeted drugs that line up.If I get 19 years, I will be in my lower 90's---you are to be admired---and your Dancing, which is a great form of exercise, sure beats the time I spend on a tread mill.

Much More Success, I Pray,

Nalakrats

abmicro
abmicro in reply to Nalakrats

Thanks. Havent done BAT, but everything else ive dine. Will try anything if nothing left to try. My dancing went by wayside with my pelvic and back pain from cancer. Would do anything to dance again.

Nalakrats
Nalakrats in reply to abmicro

I would start some research---you can start by contacting Dr. Denmeade's Office at John Hopkins---or you can put out a Post asking for those on this site,--> their stories/contacts with BAT,----> we have many. Denmeade was recruiting for a new trial--it was to be combined with either, low dose Chemo, Xtandi, and somewhere I heard about the use of Opdivo---being away for 130, days, I may not be up to speed. But Denmeade, or others on this site will have other resources for you to contact.

Nalakrats

podsart
podsart in reply to Nalakrats

I sent an email to Denmeade but never heard back, maybe a phone call would be more effective.

Nalakrats
Nalakrats in reply to podsart

Yes it would, from others who have made contact. They got at least calls back from assistants or others. I think Denmeade, is up to his eyeballs, as I think they are recruiting for another BAT trial, combining something with the BAT.Nal.

Hidden
Hidden in reply to abmicro

Before you run out of options perhaps you might consider trying some complementary supplements that might help.

If you click on my avatar you’ll be able to read my bio and some posts I started about complementary supplements.

I’ve been taking Essiac, which is an old herbal remedy that's been around for almost a hundred years. It's relatively inexpensive and many people all over the world believe it has helped them. (including me.)

I'm the first to admit that there's no scientific peer reviewed evidence showing it to be effective, but I've been taking Essiac and CBD oil for almost 4 years and am very happy with my results so far.

Best wishes

Dave

winkoliu
winkoliu in reply to Hidden

I totally agree with Davek1200. You can try complementary supplements Essiac and CBD oil and even Chinese medicines.

RonnyBaby
RonnyBaby in reply to Hidden

I recall reading that ONE of the key ingredients in Essiac is BAD for PCa !I read that (I believe but could be wrong) i n an Archive within these forums.

IF not HERE, then somewhere else and it CAUGHT my attention.

I do a lot of reading and searching - you should see if you can find what I did and review IF it is still something you want to consume.

There are MANY far superior supplements to take - Essiac would be near the bottom of my list.

For what it is worth ......

Hidden
Hidden in reply to RonnyBaby

Hi RonnyBaby,You're entitled to your own own opinions, but I'm doing very well with Essiac thank you.

I've been taking it every day since early 2017 and my oncologist keeps telling me to "Keep doing what you're doing".

You wrote "I recall reading that ONE of the key ingredients in Essiac is BAD for PCa !"

I have researched Essiac extensively and have never read that before so please provide a link to back up your claim.

Here are two posts I started about Essiac which resulted in some very spirited discussions.

"A Complementary Therapy that might actually help?"

healthunlocked.com/advanced...

And..

"Why did these nine doctors petition the government eighty four years ago?"

healthunlocked.com/advanced...

Also..

Here's a link to a PUB MED article about a patient with Unresectable Pancreatic Andenocarcinoma, which many people consider to be the deadliest cancer of all.

The patient stopped his palliative chemo due to treatment intolerance and switched to two supplements instead (one was Essiac).

Years later, when he went to hospital for another issue, the doctors were shocked to see his pancreatic cancer was gone.

The doctors actually gave credit for his recovery to his conventional treatment.

(Even though it hadn't been able to help countless thousands of others with the same dreadful disease.)

However, they were open minded enough to admit that they couldn't completely dismiss the possibility that the supplements might have helped.

They even went so far as to suggest it would be interesting to conduct a clinical trial of chemotherapy followed by long term consumption of the supplements.

ncbi.nlm.nih.gov/pmc/articl...

Best wishes to all

Dave

RonnyBaby
RonnyBaby in reply to Hidden

Background

Essiac® contains a combination of herbs, including burdock root (Arctium lappa), sheep sorrel (Rumex acetosella), slippery elm inner bark (Ulmus fulva), and Turkish rhubarb (Rheum palmatum). The original formula was developed by the Canadian nurse Rene Caisse (1888-1978) in the 1920s (“Essiac” is Caisse spelled backwards). The recipe is said to be based on a traditional Ojibwa (Native American) remedy, and Caisse administered the formula by mouth and injection to numerous cancer patients during the 1920s and 1930s. The exact ingredients and amounts in the original formulation remain a secret.

During investigations by the Canadian government and public hearings in the late 1930s, it remained unclear if Essiac® was an effective cancer treatment. Amidst controversy, Caisse closed her clinic in 1942. In the 1950s, Caisse provided samples of Essiac® to Dr. Charles Brusch, founder of the Brusch Medical Center in Cambridge, Massachusetts, who administered Essiac® to patients (it is unclear if Brusch was given access to the secret formula). According to some accounts, additional herbs were added to these later formulations, including blessed thistle (Cnicus benedictus), red clover (Trifolium pratense), kelp (Laminaria digitata), and watercress (Nasturtium officinale).

A laboratory at Memorial Sloan-Kettering Cancer Center tested Essiac® samples (provided by Caisse) on mice during the 1970s. This research was never formally published, and there is controversy regarding the results, with some accounts noting no benefits, and others reporting significant effects (including an account by Dr. Brusch). Questions were later raised of improper preparation of the formula. Caisse subsequently refused requests by researchers at Memorial Sloan-Kettering and the U.S. National Cancer Institute for access to the recipe.

In the 1970s, Caisse provided the formula to Resperin Corporation Ltd., with the understanding that Resperin would coordinate a scientific trial in humans. Although a study was initiated, it was stopped early amidst questions of improper preparation of the formula and inadequate study design. This research was never completed. Resperin Corporation Ltd., which owned the Essiac® name, formally went out of business after transferring rights to the Essiac® name and selling the secret formula to Essiac Products Ltd., which currently distributes products through Essiac® International.

Despite the lack of available scientific evidence, Essiac® and Essiac-like products (with similar ingredients) remain popular among patients, particularly in those with cancer. Essiac® is most commonly taken as a tea. A survey conducted in the year 2000 found almost 15% of Canadian women with breast cancer to be using Essiac®. It has also become popular in patients with HIV and diabetes, and in healthy individuals for its purported immune-enhancing properties, although there is a lack of reliable scientific research in these areas.

There are more than 40 Essiac-like products available in North America, Europe, and Australia. Flor-Essence® includes the original four herbs (burdock root, sheep sorrel, slippery elm bark, Turkish rhubarb) as well as herbs that were later added as “potentiators” (blessed thistle, red clover, kelp, watercress). Other commercial formulations may include additional ingredients, such as cat’s claw (Uncaria tomentosa), the four original herbs along with echinacea and black walnut.

Side Effects and Warnings

The safety of Essiac® is not well studied scientifically. Safety concerns are based on theoretical and known reactions associated with herbal components of Essiac®: burdock root (Arctium lappa), sheep sorrel (Rumex acetosella), slippery elm bark (Ulmus fulva), and Turkish rhubarb (Rheum palmatum). However, the safety and toxicities of these individual herbs are also not well studied. Various Essiac-like products may contain different or additional ingredients, and patients are advised to carefully review product labels.

Potentially toxic compounds present in Essiac®include tannins, oxalic acid, and anthraquinones. Tannins, present in burdock, sorrel, rhubarb, and slippery elm, may cause stomach upset and in high concentrations may lead to kidney or liver damage. In theory, long-term use of tannins may increase the risk of head and neck cancers, although there are no documented human cases.

Oxalic acid contained in rhubarb, slippery elm, and sorrel, can cause serious adverse effects when taken in high doses (particularly in children). Oxalic acid toxicity/poisoning may be associated with nausea, vomiting, mouth/throat burning, dangerously low blood pressure, blood electrolyte imbalances, seizure, throat swelling that interferes with breathing, and liver or kidney damage. Deaths from oxalic acid poisoning have been reported in an adult man eating soup containing sorrel and in a four year-old child eating rhubarb leaves. The amount of oxalic acid in Essiac® preparations is not known. In cases of suspected oxalic acid poisoning, medical attention should be sought immediately. Regular intake of oxalic acid may increase the risk of kidney stones.

Anthraquinones in rhubarb root or sheep sorrel may lead to diarrhea, intestinal cramping, and loss of fluid and electrolytes (such as potassium). Use of rhubarb may lead to discoloration of the urine (bright yellow or red) or of the inner mucosal surface of the intestine (a condition called melanosis coli). Fluoride poisoning has been reported with the use of rhubarb fruit juice. Rhubarb products manufactured in China have been contaminated with heavy metals. Chronic use of rhubarb products may lead to dependence.

Based on animal research and limited human study, burdock may cause either increases or reductions in blood sugar levels. Caution is advised in patients with diabetes or hypoglycemia, and in those taking drugs, herbs, or supplements that affect blood sugar. Serum glucose levels may need to be monitored by a healthcare professional, and medication adjustments may be necessary. Diuretic effects (increasing urine flow) and estrogen-like effects have been reported with oral burdock use in patients with HIV.

Reports of anticholinergic reactions (such as slow heart rate and dry mouth) with the use of burdock products in the 1970s are believed to be due to contamination with belladonna alkaloids, which resemble burdock and can be introduced during harvesting. Burdock itself has not been found to contain constituents that would be responsible for these reactions.

Under the circumstances, it is moot to debate it. We see it / interpret it in our way .

THE ABOVE IS A SAMPLE of what is out there to read up about.

You can see why I ruled it out for ongoing / long(er) term use.

The problem is - there is no real PROOF that it is beneficial over the long term - you claim a few years - I rest my case.

I found this reference quickly there's more where t came from .....

However, I wish you well on your journey - you've had a long and courageous battle - I hope that there's still lots of fight left in you !

Hidden
Hidden in reply to RonnyBaby

Nice try but no cigar.

I had already read that article.

You wrote that you had read that Essiac is bad for Pca, but that article doesn't say that at all.

That article certainly has a list of possible side effects and potentially serious problems if some of the compounds Essiac contains were to be taken in sufficiently high doses.

However lists like that could easily apply to almost anything we ingest.

(even conventional medicines)

Provided Essiac is taken at normal dose levels it is usually fine.

If someone has discomfort they can stop taking it whenever they like.

The doctors in that PUB MED article obviously didn't see it as a serious problem or they wouldn't have suggested including it in a clinical trial of chemo followed by long term use of the supplements.

Cheers. Dave.

RonnyBaby
RonnyBaby in reply to Hidden

I respect your point of view - I'm just saying, for me, that there was enough lack of 'evidence' to point me elsewhere.

For what it is worth, virtually all of the supplements that I take - I learned about within these forums.

There's good, bad, some risks and some controversy about a lot of 'supplements'

One of the main criticisms MANY point to is a lack of quality assurance and what'some' of the real (or substituted) ingredients are in these supplements.

I'm not saying that ALL supplements are suspect, but I am absolutely convinced that MANY of them are NOT what they claim to be.

There was a large third party analysis done by an independent entity of good repute that analysed a whole bunch of supplements and the statistics and conclusions weren't very flattering to the industry as a whole.

That is why I am VERY careful about what I buy and consume. Typically, you get what you pay for - if you pay for and purchased the HIGH end / HI priced versions.

One of the major conclusions was that the BIG name brands were some of the WORST offenders.

It is, as always, buyer beware.

Note that I am a Canadian and have access to somethings that you do not and vice-versa.

The Essiac up here is commonly found at Walmart. Not sure about how many other 'sources are out there and not sure about WHICH formulation is used.

I will tell you about the supplements I have taken for awhile - all read and learned about within these forums - Zyflammend, Metformin, Black Seed Oil, Dukoral,

D3 + K2 combo, "B' Complex, Vit 'C', Pippali, Quercetin, Curcumin, Garlic-allicin,

Soy Isoflavones and a few herbals for sleeping.

Some are extracts - I encourage you to read up on a few of them listed - you will be in for a surprise - I'm certain ....

And no stomach upsets with ANY of them ! It's about timing and which foods to take with them.

I hope you can come up with a new beginning abmicro. Maybe that should be abmacro. Hope they stop the pain. I'm a know nothing, but wish you well.

j-o-h-n
j-o-h-n in reply to monte1111

You're not a know nothing.... you're a don't know anything....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/23/2020 10:15 PM EST

"Am I at the end of life? " Post tomorrow and I'll let you know.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/23/2020 10:20 PM EST

abmicro
abmicro in reply to j-o-h-n

still here walking on the top side of the green

j-o-h-n
j-o-h-n in reply to abmicro

Way to go........and stay that way........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/25/2020 8:40 PM EST

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