advice please! : Hello. I was... - Advanced Prostate...

Advanced Prostate Cancer

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advice please!

BonnieKlyde profile image
30 Replies

Hello.

I was diagnosed about a year ago with stage 4 prostate cancer. I was on hormone therapy but that is no longer surprising the cancer. It is in my bones, currently spreading in my pelvic bone and lumbar.

I hope to start chemotherapy in the next month. But with my current health I don’t know if I will be able to handle it. I sleep 20 hours a day and have pain as soon as I stand up as the pressure on my bones. I will also have a castration surgery to stop the testosterone from fueling the cancer.

I am hoping to find a more natural less invasive way of slowing down the cancer and even it going back into remission if possible. Please send recommendations.

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BonnieKlyde
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Derf4223 profile image
Derf4223

You're more likely to get useful tips here if you put some meat on your bio's PCA details. Eg staging, treatments to date, etc. The best and only generic tip is to exercise cardio/aerobic/resistance training. The last bit is non-optional. And zone 2 or zone 3. Much more about exercise-for-PCa-patients is elsewhere on this site and the interweb.

BonnieKlyde profile image
BonnieKlyde in reply to Derf4223

Stage four metabolic prostate cancer. It’s spread to the bones and almost every organ except for the brain heart and lungs.

I’m currently on hormone therapy. But the injection every three months is no longer suppressing my testosterone, causing my PSA to rise again. It became resistant to the drug. So the next thing is to castrate( cut the testicles off). And start. Chemotherapy. my next oncologist appointment is July 26 to get a date as when I will start chemotherapy. July 16 to schedule date for the operation.

The drug I take every day is called Apalutamide. And the injection I was getting every three months is called Zolodex.

my PSA was originally 281. After the first injection three months later, my PSA was below one. Now I am back up to 40. And the doctors told me the cancer is active and spreading in the bones. The tumour in my prostate is 8 cm.

when I stand up, it feels like my bones are falling apart.

for pain management I have a fentanyl patch and Hydro morphine as a breakthrough medication. but with THC and CBD by accompanied by ibuprofen I am able to stay away from the Hydromorphine.

Derf4223 profile image
Derf4223 in reply to BonnieKlyde

May God help you and your family and friends through this time.

BonnieKlyde profile image
BonnieKlyde in reply to Derf4223

Thank you

gsun profile image
gsun in reply to BonnieKlyde

If apalutamide isn't working, removing the testicles won't either. Talk to your doctor.

BonnieKlyde profile image
BonnieKlyde in reply to gsun

the doctor actually supported removing the testicles.

gsun profile image
gsun in reply to BonnieKlyde

Why?

BonnieKlyde profile image
BonnieKlyde in reply to gsun

To slow down the growth to give chemotherapy the best chance of working

GP24 profile image
GP24

Zoladex is still suppressing the testosterone but most of your tumor cells have mutated to live with very low testosterone and keep growing.Removing the testicles instead of Zoladex will not stop the tumor cells from growing. You have to get chemo now. After that you could get Pluvicto:

novartis.com/ca-en/news/med...

After that a chemo with Cabazitaxel.

BonnieKlyde profile image
BonnieKlyde in reply to GP24

Thank you for the advise. I will read the link you sent. 😊

chochip4 profile image
chochip4

Check out Fenbendazole.org website. Great information for using Fenbendazole to fight various cancers, including prostate cancer.

85745 profile image
85745 in reply to chochip4

Agree, heal navigator.com is another good site .One should research Ivermectin as a stand alone and along with chemo.

JRLDH profile image
JRLDH in reply to chochip4

The main risk with this is that he is already in bad health and these two horse dewormers, while inexpensive, are basically chemotherapy without a medical oncologist supervising.

They are cytotoxic by interfering with microtubules during mitosis. This will affect healthy rapidly dividing cells, just like chemotherapy that was developed for humans.

During professional chemotherapy, the medical oncologist requires a regular check of blood counts. Without this, you run into risk of severe infection or bleeding.

Like Docetaxel or Cabazitaxel (the standard chemo drugs for prostate cancer), Fenbendazole and Ivermectin are myelosuppressive:

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

BonnieKlyde profile image
BonnieKlyde in reply to JRLDH

Thank you for the insights. I did try ivermectin for a bit but it was really hard on my body.

Bangkok profile image
Bangkok

If you can afford it try radio ligand ( Lute 177). Read my posts. Same diagnose as you - I'm 4 years in and I have just enjoyed 1 1/2 years with zero meds, running 5 K 4 times a week and just cycled 1100 K with my wife. My Psa is just starting to rise again and by next fall I'll be back on hormones but it has been a terrific 1 1/2 years.

BonnieKlyde profile image
BonnieKlyde in reply to Bangkok

I am sorry to hear about your diagnoses. But I am glad to hear you are healthy enough to exercise and enjoy life.

I will look into the treatment you suggested.

Lost_Sheep profile image
Lost_Sheep

Ultra-low testosterone leads to estradiol/estrogen deficiency. Men with estrogen deficiency need estrogens the same as post-menopausal women do to combat osteoporosis. See if your oncologist/hematologist/endocrinologist or primary physician will prescribe low-does estradiol patches or gel for absorption through the skin.

BonnieKlyde profile image
BonnieKlyde in reply to Lost_Sheep

Thank you for the advise. I will deffently ask my oncologist for bloodwork. And then a low-dose prescription if they think it’s necessary.

Lost_Sheep profile image
Lost_Sheep in reply to BonnieKlyde

Before you talk to your oncologist about estrogens (estradiol or the second form of estrogen, known as E2) for prostate cancer familiarize yourself with this medical journal article:

"Estradiol for the mitigation of adverse effects of androgen deprivation therapy"

Go to page 11 (in the .pdf file or toward the end of the document on the web version) and memorize the section labeled

"Low-dose parenteral estradiol add-back: the best solution?"

Find the article at

erc.bioscientifica.com/view...

or

pubmed.ncbi.nlm.nih.gov/286...

and click on the "Download PDF" link in the upper right

I have links to many other persuasive documents about estrogens' benefits for prostate cancer patients; trials, etc. if you want them. NOT FDA APPROVED. So, depending on how forward-thinking your oncologist is, they may or may not think it is "necessary".

Look up the medical term "iatrogenic" and let the meaning seep into your soul. It is where medical treatments' side effects cause harm to the patient. Then realize that if a cancer doctor's patient dies of some ailment OTHER THAN CANCER (but perhaps caused by the cancer treatments) it does not appear in that doctor's "Loss" column.

BonnieKlyde profile image
BonnieKlyde in reply to Lost_Sheep

thank you for all your information.

my wife actually did ask if I could go in a few more hormones to suppress the male hormones. But heart disease runs in my family, and the risk of getting a blood clot or having a heart attack was too high. They used to use the form of helping prostate cancer, but too many people got blood clots. But I will bring it up with my oncologist on July 26.

Lost_Sheep profile image
Lost_Sheep in reply to BonnieKlyde

At the risk of overloading you with advice, I will note that estradiol 's (transdermal, NOT ORAL) risk of cardiac problems has been shown in multiple studies (PATCH and VACURG prominent among them) to be no worse than and probably better than hormone agonists. Hormone antagonists have a bit better cardiac profile than agonists and I know of no studies directly comparing estradiol to antagonists unfortunately.

If your PCa still responds to lower testosterone, I would definitely ask for Orgovyx/relugolix pills as a first choice and its injectable counterpart degalarix as a second choice. (The pills start and stop their effect faster.) Both are FDA-approved (unlike high-dose estradiol, which might require time-consuming debate with your providers). On the other hand, late-stage disease brings in the "right to try principle which allows patients to try novel treatments not otherwise available.

Nous profile image
Nous

hi BonnieKlyde ... hope things start to go better for you ... consider checking-out ... envita.com ... leal.health .., best wishes ... Nous 😊

BonnieKlyde profile image
BonnieKlyde in reply to Nous

great thank you. I will definitely check out that website.

Willy9173 profile image
Willy9173

I am replying for Willy9173 as his wife. Unfortunately I lost my husband a year ago June. He put up a brave fight for 5 years but in the end lost the battle. He was 87. We are also in Canada where there are limited avenues for treatment of postrate cancer unlike in some other countries such as the US. He also was diagnosed in 2018 with stage 4 prostate cancer. His doctor informed us that he would not do surgery for removal of prostate for anyone over age 65. He was put on Zoladex injections every 3 months. This worked for the first year then stopped working and he had 28 days of radiation and was put on Zytiga. Again this helped for a while then he was moved to XTANDI® (enzalutamide) which he did not tolerate well and could hardly get off of the bed so this was stopped. More scans more radiation etc nothing was stopping the cancer from his bones. He was weak and unsteady and at this point we refused chemo as we did did not think he could withstand the treatments at this stage and would just cause more suffering. Then came a bad fall, a broken hip and hospitation for seven weeks and a new hip. Home again to recover with a physiotherapist's help. I asked about plivecto which had just been approved by Health Canada for use for treatment of prostate however it was not covered under our Universal Heath Care, the only place offering the treatment was Montreal (we are in Ottawa) so that was doeable, the cost was between25,000 to 30,000 dollars we agreed to it as it seemd the last hope. Before this could be arranged My husband suddenly stared falling and loosing his balance every day, he was hospilized again , a tumor was found on his cervical spine causing the falls, he had surgery, anouther 7 weeks in hospital and he still cant walk. Pluvicto was now off the table. More radiation on the spine. He never walked again. We did our best but it was not good enough.

Some hard decisions have to be made and its very difficult. I will ask myself these questions the rest of my life . Did we make the best decisions for him. In restrospect if I knew then what I know now we would have sought treatment outside of Canada where there seems to be a senario that one size fits all and the same routine is followed for all patients. As far as chemo is concerned I dont think it would have helped at that stage maybee if started early. We took the path of least suffering and kept him withhis family at home as much as possible .

My husband was much older than you when diagnosed. I'm sure you will make the best decisions for your treatment with your family. Look into Pluvicto maybe its now covered by our health system and question everything that the doctors tell you knowledge is power. Good luck and God Bless

BonnieKlyde profile image
BonnieKlyde in reply to Willy9173

I’m so sorry to hear about your husband‘s battle. I already lay in bed most all hours of the day. The pain in the bones is excruciating. I understand you guys turning down chemotherapy as I myself don’t know if my body will handle it. I am already so weak and barely walking.

thank you for your advice about that medication I will look into it.

sorry for what you and your family had to go through. Thank you for sharing your story.

Retireddoc profile image
Retireddoc in reply to Willy9173

You did the best you could with the information you had at the time in a very difficult situation. It sounds like you love/loved your husband very much and were there for him until the end. You shouldn't second guess yourself now.

God_Loves_Me profile image
God_Loves_Me

There is no clinical proven natural way to slow down cancer cell. if you have only in bones then I would say talk about xofigo-us.com/

Also agree chemo specially docetaxel is good and strong treatment for cancer

Have you done genetic testing ?

Do you have options for PARP Inhibitors ?

Have you done PSMA PET Scan? Will you able to count how many mets ?

Have you consider radiations treatment ?

may be radiations oncology can target the bone that has pain and reduce the pain immediate basis.

debulking surgery means remove as many tumors that has large size

BonnieKlyde profile image
BonnieKlyde in reply to God_Loves_Me

no I have not done genetic testing. What what I want to test for

None of the doctors have ever gone over PARP inhibitors

I have never heard of the PSMA PET scan. But I will definitely ask my oncologist on July 26 about that.

I was going to do radiation, but they can only do a one spot treatment and all my bones ache so they wouldn’t know where to start.

j-o-h-n profile image
j-o-h-n

Where are you being treated? Names of docs?

Good Luck, Good Health and Good Humor.

j-o-h-n

BonnieKlyde profile image
BonnieKlyde in reply to j-o-h-n

I’m being traded at the Abbotsford Cancer clinic. By a doctor Deluce. At North Shore urology by Dr. Victor Chow

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