thoughts from a newby

[rpol]

Only found this site recently (and started docetaxel 2 days ago). Much helpful info, well organised, with useful links. My only thought for improvement is that the abbreviations and nomenclature is confusing for a beginner. Names of medecines vary from country to country. Even ADT floored me for a while, all UK literature just calls it hormone therapy. Maybe a dropdown menu to help beginners, something like:

Abbreviations etc

Clinical name first (abiraterone), brand name second (Zytiga) varies by country

PCa prostate cancer

ADT androgen deprivation therapy

mCRPC metastatic castration-resistant Prostate Cancer

mets metastases

bicalutamide Cassodex. First line hormone therapy – pills, followed by

luprorelin leuprolide, Prostap3, Lupron, Eligard. First line hormone therapy (ADT) injection

degarelix Firmagon, another ADT

docetaxel Taxotere, chemotherapy now given alongside ADT

abiraterone Zytiga

enzalutamide Extandi, Xtandi

Prednisone or Prednisolone, corticosteroid (type of steroid) to treat/avoid allergies

Ra 223 dichoride Xofigo

ALA alpha-lipoic acid, treats peripheral neuropathy

I am sure there are loads more! Oh, just noticed Tips for great content, which has a bullet Avoid abbreviations so newbies can follow. Doesn't work, cos nobody is going to spell out ADT etc etc every time.

But I repeat, huge amount of useful info. Many thanks for maintaining it.

rpol

[Dr_WHO]

Glad you found this sight. Your comments are right on. When I first joined I was googling abbreviations almost every entry. Now I use abbreviations without even thinking. Listed below is a list of some of the more common abbreviations

To go in hand with that is the American Cancer Society’s web page on Prostate Cancer

cancer.org/cancer/prostate-...

Note, they update these two sites so it is worth the effort to review them time to time. For example, they now reference the Stampede trial and the value of surgery even if the cancer has “mildly “ spread.

Finally, I wish there was a way to warn fellow warriors about the bad sites out there. For example, baking soda and maple syrup will not cure cancer. (But it will take care of an upset stomach.)

Again, wonderful post. Thank you.

Walt (a Chemist not a MD)

[JamesAtlanta in reply to Dr_WHO]

Great observation from a ‘newbie’. And welcome to our group!

When I found our site I did the same thing as Walt and constantly Googled the acronyms. So glad you shared the abbreviation site, Walt!

I have (and still) struggle with the technical language in the clinical trials and studies. Really appreciate it when folks like Patrick or Walt try to put things in simple terms.

Have a great day!

James

[rpol in reply to Dr_WHO]

thanks for the links, but only abbreviations, and I found one immediately not on the list, ALA, admittedly not strictly PCa but came up in my searches. Your list ws last updated years ago. I guess my list was also highlighting synonyms, brand names v chemical names.

[BigRich]

A useful suggest for beginners;

Rich

[j-o-h-n]

I hd the sm prblm and finnly figurd thm out....

Gd LK and Gd Hlth.

j-o-h-n Mon 1/8/18 9 PM EST

[Roland632017]

Hi rpol

So happy to hear your treatment goes well.

I was keen in your reply and some how I do find consolation since you said being diagnosed October 17 aged 73. I was diagnosed in the same month but 10 years younger than you.

It was right hydronephrosis and blocked right ureter that I had a cystoscopy.

On that day I had complete blockage resect at junction Prostate/ureter & right Ureteric orifice. So tumour T3 on right bladder was diagnosed pending other biopsies.

So with further testing on 30 November 17 was confirmed Advanced Prostate Cancer Stage 4 D2 with metastasis to numerous lymph nodes and the spine and ribs.

What I was alerted is you mentioned your doctor said about "no pain means the treatment is working and is low on bone fractures "

I thank you for highlighting this as I have for weeks unable to understand where I stand on my regime/treatment.

So looks like this prognosis is heading in the right direction.

Thanks again,

Roland

[rpol in reply to Roland632017]

Major search to find where I had mentioned bones fractures, in reply to another post, so reiterate here so I dont lose it again!

Dx Oct 2017, age 73, PSA 960 at start, now down to about 7, Gleason 4+3, mets widespread in bones, esp. humeri and femora, on ADT leuprorelin and had one round of docetaxel. Within days of starting ADT I came off pain medicine, and orthopaedic specialist says lack of pain shows ADT is working well, and likelihood of bone fracture is now very low, just avoid running and similar impact stuff.

To clarify, my bone scan report early in the initial diagnosis process said mets were advanced in many bones with risk of pathological fractures in upper arm and leg bones. This spooked the oncologist, who had immediate xrays taken and referred me to orthopaedics. But the oncologist also noted that a month had elapsed between the bone scan and the xrays. I was on ADT all this time, and the pain pretty much went within days to a week of starting ADT. Onc said he hoped the bones had already repaired some in response to ADT, and so it proved. When I finally saw the orthopaedic chap recently, that was when he said pain was most sensitive indicator. He did say that mets in bones were sclerotic (hardening) and would not fully recover.