A List for Newly Diagnosed that My Wife did in 2022 please add to list if anything is missed or wrong or needs updating. TIA

[Shorehousejam]

I have to pack, moving trucks coming in AM…and Rest…

She shared this on a farce book group page.

This List Is Not Complete Please feel free to Message Chat Us with your Email as items on the listing example: ie: were deleted / removed by a healthunlocked admin.

The original post keeps getting modified by healthunlocked administrators

Most information is no longer on the list.

The items were removed or not allowed on the post thread via healthunlocked.or makecare.org,

So it’s scrabbled from the original clear and concise post.

Most of this information is provided on threads here, this is just a quick reference guide, I have yet to update with the abbreviation list

Healthunlocked.com malecare.org

Last Updated 02/04/2023

When My Husband was diagnosed in July 2022, We were wrought with fear and then he started treatment. It’s still scary but we keep moving along.

I keep adding to this post. So, If I missed anything please say so in comments and I’ll add it

For Newly Diagnosed:

Your physicians will work with you to determine the best treatment option for you and your diagnosis of prostate cancer and with possible metastases, to lymph nodes / bones.

A team of physicians needed:

Urologist

Medical Oncologist

Radiologist

Radiology Oncologist

Orthopedist

Pulmonologist

Of course a Primary Physician

Nutritionist

Dentist

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Scans:

Preferably PSMA Pet Scan

PYLARIFY® PET/CT combines the accuracy of PET imaging, the precision of PSMA targeting, and the clarity of an 18F radioisotop

Tracks the psa/psma uptake in the body and shows possible bones, lymph nodes and organs affected.

Pylarify is more sensitive than

68Ga-PSMA-11 for recurrent PCa

But NaF18 PET/CT is more sensitive for bone metastases:

Bone Scan

Cat Scan

MRI

Preferably a 3T Guided MRI

Ultrasound

Biopsy:

Preferably a MRI Guided Transperineal Biopsy

It is possible to get an infection or sepsis from a Transfusion or Transrectal Biopsy

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Treatments may be systemic (affecting the whole body) or local (focused in the bone).

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These include:

* ADT, Androgen Deprivation Therapy, which works by decreasing testosterone levels and slowing cancer growth

* Hormonal therapies such as abiraterone and enzalutamide

* Chemotherapy, such as Docetaxel Infusion Chemotherapy is often used after the body stops responding to hormone therapy,

Presently, now all three therapies are suggested after diagnosis.

Aka as Triplicate Therapy

*Aides for Chemotherapy: Ask your Medical Oncologist if you can use Claritin before and/or after, it may help with side effects.

*Aides to Reduce Chemotherapy Neuropathy:

Ice Boots, Gloves, and a Cap/Hat. Found online ie: Amazon

*Bisphonsphanates, a group of drugs to reduce the risk of a Skeletal Related Event ; they act to bring calcium levels down, Densonumb another option to reduce the risk of SREs

* The use of Vaccines such as an Apeceden vaccine and *Immunotherapies such as Provenge (Sipuleucel-T)and such as Keytruda (Pembrolizumab)

* Focal Laser Ablation technique, using a needle to destroy tumors with heat, Cryo Ablation (cold) and/or electric currents

* Cytoreductive surgery (Debulking) or the removal of the prostate in the setting of metastatic disease is a resection, removing as much of the tumor as possible, often used as a type of treatment to enhance the effectiveness of systemic therapies

*Radical prostatectomy is surgery to remove the prostate gland. Some tissue surrounding the gland, and the seminal vesicles, It also involves removing a number of nearby lymph nodes at the same time

* There are several methods of radical prostatectomy:

Radical prostatectomy with retropubic (suprapubic) approach.

Nerve-sparing prostatectomy approach.

Laparoscopic radical prostatectomy

Robotic-assisted laparoscopic prostatectomy / DaVinci

Radical prostatectomy with perineal approach.

Radical prostatectomy may be with pelvic lymph node removal / dissection:

*Pelvic lymph node dissection (PLND)

*Extended Lymph Node Dissection (EPLD)

*Radiation and Radiopharmaceuticals:

*Radionuclide such as Actinium-225 is an alpha-emitting radionuclide

* Radiation therapy, SBRT, EBRT, brachytherapy/seeding

* Radio-pharmaceuticals such as Pluvicto, Xofigo, Radium 223

* Radioligand Therapies:

PLUVICTO™ (lutetium Lu 177 vipivotide tetraxetan) Pluvicto Lutetium-177–PSMA-617 for Metastatic Castration-Resistant Prostate Cancer

*Clinical Trials:

Home - ClinicalTrials.gov

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Tests:

*Germline testing: BRCA 1/2

*Genome sequence testing:

Both test to look For mutations and variants,

in Tier 1 most useful,

In Tier 2 somewhat useful

in Tier 3 less useful

Some prostate cancer changes/morphs (morphology).

The test(s) above may be repeated after prostate removal or before considering the use of immunologies or vaccines.

A Decipher Test/ Score is obtained through a prostate biospy or at removal. This number is used to see how well an individual’s prostate cancer may respond to certain therapies. This is only when disease is contained to prostate with possibly No spread.

Locations for Testing: Send your email through via messenger chat

(Send Biospy Samples for a 2nd Opinion)

After my husband’s Radical Prostatectomy with Basic limited lymph node removal, we sent the slides from the NYC Hospital to Dr. Johnathan Epstein. My husband unfortunately was upgraded to a Gleason 9 from a Gleason 8 and also upgraded to a Gleason 9 from his original transperineal biopsy.

or

Memorial Sloan Kettering NYC

I thought this list would be useful and maybe give members including my husband and I, a good overview of what to ask your physician what you can advocate to do or have done.

Please use all as reference only and not as medical advice.

Books and Guides:

1. Dr. Mark Scholz: The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer

2. Dr. Mark Moyad: Promoting Wellness Beyond Hormone Therapy, Second Edition: Options for Prostate Cancer Patients

3. Dr. Patrick Walsh: Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer

4. Prostate Cancer—Patient Version - NCI

cancer.gov/types/prostate

8. A Very nice summary of ADT and a few related PCa therapies: Hormone Therapy for Prostate Cancer Fact Sheet – NCI

cancer.gov/types/prostate/p...

Exercise and/or Physical Activity/Therapy:

Exercise, Movement and light weight training May be one of the most important things that men with prostate cancer can do: If possible start with Light weights 3lb to 10lb and go up, any resistance training is recommended. Also, Stretching and Lots of Walking shows a survival benefit for prostate cancer inflicted men.

Medications can be expensive:

Assistance programs

1. Relugolix orgovyx.com

2. Firmagon rxhope.com/PAP/info/PAPList...

3. Zytiga janssencarepath.com/patient...

4. Zytiga discounted cash price goodrx.com/zytiga

5. Xtandi

• astellaspharmasupportsoluti...

• xtandi.com/financial-support

6. Nubeqa nubeqa-us.com/support#:~:te...

7. Darolutamide nubeqa-us.com/support

8. Erleada janssencarepath.com/patient...

9. Lupron lupronprostatecancer.com/hc...

10. With MO approval it is possible to self-inject Lupron mayoclinic.org/drugs-supplier

11. Something Rather New and Risky:

Not for the faint of heart.

The following should only be considered and offered under your Medical Oncologist and/or Physician.

Bat Therapy

BIPOLAR ANDROGEN THERAPY (BAT): A Treatment Option for Metastatic Castration-Resistant Prostate Cancer (mCRPC).

The BAT regimen was introduced in January 2015 in a report by Schweizer and his Johns Hopkins colleagues: “Effect of Bipolar Androgen Therapy for Asymptomatic Men with Castration-Resistant Prostate Cancer” (Sci Transl Med). In their study, 16 men with low to moderate metastatic burden received monthly cyclic intramuscular testosterone (T) injections, which elevated the ADT-suppressed T from castrate to supraphysiologic levels greater than 1500 ng/dl. The T levels fell back to baseline by 28 days. During treatment, androgen suppression was maintained.

Alternative Protocol Theories:

Here Say and Not Proven:

Please speak to your physician about any Self/Prescribed Minerals, Protocols, Supplements, and Vitamins.

Many can Do More Harm Than Good, especially to the Liver and Kidneys.

Joe Tippens Protocol:

Fenben

People have been hospitalized and even succumbed to toxicity to the kidneys and liver. Not Proven

Joe Tippen had chemotherapy, radiation as well as having a lung partially removed while on his own protocol.

Under the care of a licensed physician only and for constant monitoring.

Membenzaloe

Doxycycline

Metformin

Statins

81mg aspirin, and other supplements are suggestive to inhibit angiogenesis and promote apoptosis.

Again, only under a lincensed physician preferably a Medical Oncologist

May Be Helpful:

All Organic Diet, No Dairy or No Meat Diet, Fasting or Detox Diets.

Supplements:

Lycopene

Selenium

My husband does Not take the above.

Speak with your Physician and Medical Oncologist first

Calcium may feed prostate cancer, although our Medical Oncologist suggested it.

Vitamins:

Vitamin D

Vitamin K2

Vitamin B may feed prostate cancer

None of the statements shared within this post or thread is medical advice, medically advised or medical suggestions.

Consult and Speak to your

Physician about your health.

This post is about sharing information and research only

Best Hospitals for Treating Cancer

health.usnews.com/best-hosp......

We hope this helps alittle..

Long May We All Run…

Thank you

JaM

[j-o-h-n]

I think this should be added to your list of scans:

Digit Rectal Exam, consider bringing along a large Hand Held Mirror...... helps in keeping your eye on what's going on back there......no hanky no panky......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/16/2023 6:18 PM DST

[Shorehousejam in reply to j-o-h-n]

Yes ugh how would I know lol

[Dieselbgood]

The very important thing if you’re going to have surgery to remove it is choosing the surgeon. And I highly recommend having surgery. The surgeon should be very experienced with the procedure. The more operations he’s done the better. I had Doctor Samadi in New York. He’s one of the best in the world.

[Dynamo]

I just got a msg that U wanted my opinion on a RP.. Well I had mine in 1995 when I was just 52 with a Gleason score of only 5 or 6.. I think my Uro at the time was getting ready to retire & move to FL so he needed the money & talked me into it.. And the internet was just coming about so I wasn't able to research it much.. I absolutely would NOT do it again.. I have not been able to have sex since than.. (28 years.. Yikes) And don't believe that crap they tell U about a nerve sparing type of procedure.. I haven't heard of anyone where that worked out well.. And my op failed after 7 or 8 years and I had to have radiation to my pelvic area.. That's also a big No No.. Didn't really help much and I am left with radiation proctopathy which came on 6 or more years after.. (the condition is loss of bowel control) and I am 80 now & unable to travel due to that condition.. Pitts.. I was never informed that the condition could occur.. Its a mine field out there & the Docs never give U all the facts..

You have to do your own research.. And sometimes put the Docs on the spot or drag more info out of them as they never seem to tell U all U need to know about treatments & SE,s

[Hidden in reply to Dynamo]

Worst case scenario.

I had nerve sparring RRP in 2018, no incontinence issues, and willy worked perfectly 6 weeks after.

Radiation has also changed in the last 20 years. SEs have vastly improved with the accuracy and dose management via computerization.

Please, its YOU, not U, you're not in Jr high!!😊

[j-o-h-n]

Name a guy who doesn't and he's the same guy who wish he could......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/19/2023 10:03 PM DST