New and terrified: My husband (60) is... - Advanced Prostate...

Advanced Prostate Cancer

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New and terrified

CantChoose profile image
104 Replies

My husband (60) is in the process of being diagnosed. We already know his PSA is 100 and alkaline phosphatase is >800, so we're already pretty sure we're looking at metastatic disease. He is having pain in his ribs and lower back. Additionally, this all began because he had the flu, didn't get better/recurring fever, so the doctor suspected pneumonia. He did indeed have a spot on his lung. She's treating it for now as pneumonia but in light of the other labs, we're now looking at another site of potential metastasis.

He is scheduled for biopsy and CT in 6 days (waiting on rectal culture and antibiotic therapy first).

What should we be asking? How do I get my own terror under control? The more I read, the more I see how bad these labs are and how ominous his constant fever and bone pain is. Can anyone offer hope?

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CantChoose
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104 Replies
NPfisherman profile image
NPfisherman

Welcome to the forum that no one wished to join... Hopefully, the CT scan you are getting is an axumin PET/CT scan for prostate cancer... There is hope....many on this forum have been fighting prostate cancer for over 10 years and still fighting.... you are scared...everyone is initially.... there are many new drugs that have been added to the fight....269 clinical trials for prostate cancer, and new discoveries made regularly...

An early mistake I made was looking at the American Cancer Society information for Stage 4 prostate cancer survival... the info is based on data from 2010-1014... they have approved multiple new meds since then... Lu-177, the new immunotherapies--PD-L1 inhibitors, PARP inhibitors, darolutamide, and more...

Take a breath...get your tests....make sure you are at a center of excellence for prostate cancer....and fight.... I got diagnosed two weeks before I turned 60... Initially, I had trouble sleeping and started taking melatonin 5 mg---on 15 mg now... It's a lot to deal with....feel free to ask questions here...

There are many knowledgeable posters here and lots of support for you and him... Hang in there, and good luck...

All the best,

Don Pescado

Zxpl profile image
Zxpl

I understand your feelings too well. I look at my husband and worry, “Is all of this-all the time we’ve spent together, everything we’ve done and still hope to do going to be reduced to memories?”

Get OUT of that mindset and research! Don’t go to the first doctor that is recommended. I was FLOORED by the stupidity of some of the oncologists we met with. One in particular is considered a great doc, but to me, he was a complete idiot. He acted like he knew everything on the subject of pc, when in reality he was a Pharma puppet. Become informed. Knowledge is power. My husband and I believe in teamwork. It’s a good approach when dealing with cancer. I don’t know your diet , but there are certain foods that cancer loves, like sugary, packaged meals and certain foods it hates, like spinach, tomatoes, pumpkin seeds, soy, etc., but be careful. Don’t just change his diet, look at the ingredients and the way the food is grown and processed since large ‘health food’ companies will sneak in chemicals, especially in their packaging. The words “organic” and “non-gmo” are good to look for, however if they are packaged in plastics containing BPAs or other noxious chemicals, it’s a trap.

Be his health partner. Don’t coddle him, but don’t ignore his needs either. Encourage him to exercise if he doesn’t already. Be a good listener. He needs one and you do too. This forum is a great place for advice. We’re always willing to lend a hand if you have questions. Don’t be afraid, be proactive. Don’t be scared, even though all of us are, because it goes with the territory. I could say so much more, but just remember, you’re not alone. Good luck and find ways to laugh, it’s very helpful.

Rockydomus profile image
Rockydomus in reply toZxpl

Thanks for sharing this. It helps!

Tall_Allen profile image
Tall_Allen

What I learned as caregiver to 2 parents with cancer is to take it as it comes. All you know for sure is what you know now, so deal with that, instead of with your fantasies about what may or may not happen in some imaginary future. To help me stay focused in the present moment, I practice mindfulness.

You didn't mention a bone scan/CT, but that should come first. If metastases are discovered on the scan, that obviates the need for a prostate biopsy - one less invasive procedure that can have cause infection. A biopsy of the spot on the lung might prove more useful.

tkalaf profile image
tkalaf in reply toTall_Allen

What you says makes since, and I would suggest it is worth a try. As TA said, it is one less invasive procedure. I found though that many health insurance companies won't spring for scans, until a biopsy is done first.

I was diagnosed last year. My signs were PSA doubling and a nodule (from DRE). A biopsy was offered, however I asked for scans first. My health insurance wouldn't approve, and stated doctors needed to first confirm PCa from a biopsy. The reason is probably because a biopsy is much less expensive a procedure.

Tall_Allen profile image
Tall_Allen in reply totkalaf

You are probably talking about some other kind of scan. A bone scan/CT is standard-of-care with every high risk (PSA>20) diagnosis. Every insurance company and Medicare will pay for it. It is less expensive than a biopsy.

tkalaf profile image
tkalaf in reply toTall_Allen

Hi TA. I wish to thank you first for all the support you provide on this form. :)

Yes, I was speaking of CT and bone scans. I know what I had. Insurance would not pay for them, until after PCa was confirmed from biopsy. I am pretty sure insurance didn't want to incur cost of scans, until they had confirmation.

The above said, my PSA was 9.1 at time of biopsy. It was 3.8 one year earlier, less than the (PSA>20) figure you mentioned. However doctors did observe rapid (DRE) growth in the nodule, not enough reason for having scans first.

Stay healthy all!

Tall_Allen profile image
Tall_Allen in reply totkalaf

That's because bone scans are only standard for high risk. The OP has a PSA of 100, which automatically puts him in the high risk category. Your PSA (9.1) did not qualify you as high risk. If the doctor had felt your nodule as Stage 3, you would have qualified.

MichaelDD profile image
MichaelDD

Hi . Keep a level head and work this. Just like a job. I was diagnosed at 61, 64 now. I went almost 3 years after removal and radiation with a rising PSA. 5 scans both CT and body saw nothing. No metastasis. Last October my Medical Oncologist had me do a clinical trial scan at UCSF. Found I had metastasized to my lungs (both with multiple nodules more then 10 in number) only there no where else. The MO at UCSF told me the plan is to have me here "for some years". He said many new options are out there. When they are used up then there are clinical trials. Its no cakewalk but take a breath . Research.. and get second opinions. You both got this!

CantChoose profile image
CantChoose

Thank you all - - I do feel better, knowing that so many of you have been living with this so long.

It's an interesting thought that we really don't need the biopsy if the CT scan shows the cancer has spread as we suspect. Will need to ask about that, particularly if his fever isn't down by Friday. They found blood in his urine as well, so he's already got some infection. I'll update you when we know more. Thank you for the responses.

Does anyone have any recommendations for a specific hospital or oncologist in Chicago? It seems like the hospitals here are not particularly well thought of for Urology. Mayo and Ann Arbor are both pretty far.

ctarleton profile image
ctarleton in reply toCantChoose

A similar question about Chicago area specialists was asked here about a year ago.

healthunlocked.com/advanced...

Charles

Kimmilemo profile image
Kimmilemo in reply toCantChoose

Cancer Centers of America in Zion ILL

in reply toCantChoose

he could still have a mri of the prostate in my opinion, to see the local situation. It's not invasive. Here in Switzerland is the first thing they do before biopsy. PSMA PET CT would be the best scan to look metastasis if available, if not axumin PET CT.

in reply to

I should have gone to Switzerland. I agree 100 percent. Looking back I can’t understand why drs don’t do the scans first to help themselves diagnose how bad or good the situation is. If it is money that pisses me off. You know if everyone had the scans the price would drop through the floor.

dadzone43 profile image
dadzone43 in reply toCantChoose

There is an academic urology drpartment also at U Nebraska Omaha. Right now you are gathering information. The Lewanda video will tell you the current recommendations for all stages of PCa... more information. The lung spot could be a met; could be just a spot. There are lots of advances on which to place your hope

E2-Guy profile image
E2-Guy in reply toCantChoose

Dr. Robert Flanigan at Loyola in Maywood, IL is an excellent doctor. He performed an RP on my brother 19 years ago...absolutely NO adjuvant therapy and his PSA is undetectable today. No incontinence issues and still sexually active. My brother did a lot of research prior to choosing him. He responds to all of my emails within 24 hours and signs them "Bob".

VHRguy profile image
VHRguy in reply toCantChoose

Dr. Maha Hussain, my former MO, is at Northwestern. I was under her care when she was at U of Mich, and she's very good. Nationally recognized, data driven. At least a consult with her would be of great value, I'm sure. All the best!

TNCanuck profile image
TNCanuck in reply toCantChoose

If you are unable to see Dr. Hussain, I highly recommend Alecia Morgans, also at Northwestern. She treated my husband at Vanderbilt before taking the position at Northwestern.

ChicagoJ profile image
ChicagoJ

Dr Maha Husain is a highly respected oncologist and researcher specializing in prostate cancer. I’ve been seeing her for over a year and am very pleased. She is at Northwestern.

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

You know what? I can't choose sometimes, that's why I married twice (2nd one is wonderful).

Greetings.... Take a deep breath.... count to 10... We all have been there, done that and have the tee shirt to prove it. Get a good urologist, and oncologist. Don't worry about life expectancy figures... They're just numbers that don't mean anything. You've come to the right place for info and camaraderie. Live your life and don't forget to laugh. Keep posting and bring us up to date as needed.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 1:42 AM DST

SeosamhM profile image
SeosamhM in reply toj-o-h-n

Great post, j-o-h-n..... CantChoose: First, since you are new here, please note j-o-h-n's subtle insertion of his famous (infamous?) humor, even in a very serious post. Keep this in the back of your mind, you and your husband will need humor to de-stress as you navigate the many choices facing you.

I also want to reinforce j-o-h-n's point about getting BOTH oncologist and a urologist opinions as your husband moves forward. Having both of those plus this forum has kept me involved, informed, hopeful, and fighting.

I am 51 and 30 months into treatment (lotsa bone mets and some lymph nodes), and my best advice is to simply tour and search this site for any term you come across that confuses or concerns you - there is likely a string of posts with a gold mine of information. Reviewing this string alone with all of its great responses provides you with a strong initial foundation to move forward with the battle.

In the meantime, remember to keep up with your husband on normal, everyday life. An APCa diagnosis bullies us with threats to make a mockery of our past life and a hopeless mess of our futures. Making today the best day it can be is the best way of mitigating these threats!

Good luck! We are all here. - Joe M.

monte1111 profile image
monte1111 in reply toSeosamhM

Very well said. The Prostate Cancer Bully. CantChoose, You may want to do some diet changes, add some supplements and change some of your ways. But you don't have to do it all today. Or even tomorrow. You've got a lot of time to deal with this so relax and do something nice for yourself. Being 69 years in June, I decided not to really change my diet. If I was in my 40's or 50's I probably would. I take a couple of vitamins. Which is probably a couple to many. Some of the doctors are fighting the last war and giving last war life expectancy statistics. Looks like I'm going to pass my expiration date fairly easily. I thought I was going to be gone long before today, or at least in a bed, helpless. I've got two birthday parties to go to this week. One for a 6 year old and one for a 15 year old. I intend to have fun. Enjoy.

SeosamhM profile image
SeosamhM in reply tomonte1111

Ha! Awesome! Great post and on point, as always....

his cancer most likely from his rib. if his psa was normal ( and after 50 year old your suppose to do a blood psa test every year.) its not the end. i've been dealing with this for 11 years. there are so many treatments to follow not counting cancer treatment trials. i'm 72 going 73, they might find a cure by the time he reaches my age.

charlie

2dee profile image
2dee

I (76), had similar start over a year ago with over 1300 PSA. Extreme pain due to metastases throughout my body after flu and major cough. Finally Dx and treated with Lupron ADT.

We started our own Alkaline Therapy before final Dx and dropped PSA down to 362 in 12 days before start ADT.

About 5 months later below 2 where still maintain. Have pain down to manageable.

FIRST, find a local PCa support group. A group of people going through the same circumstances. Share their experiences and benefit from their learned knowledge through monthly meetings. I have members of my group who were much worse than you describe and are still coming after 5-14 years.

Find a "Nurse Navigator" to help get you guys started quickly.

Learn you are not alone and while a cure may not be possible you can sure slow it up enough that the end may be for an entirely different reason years later.

Read all you can and be very active in ALL treatment choices. It's his body and every treatment can have major side effects.

2Dee

Molman profile image
Molman

Dear Cantchoose, yes it hits you between the eyes when they tell that you might/have cancer. I was diagnosed with T4 Gleason 9 in June 2015, and too late for an operation. I have bone tumors and lymph node tumors, but still going strong with a PSA of 307. Take one step at the time, and write down questions and concerns down, before you meet with the doctor, so you are sure that you cover all relevant questions and areas. I dont know where you live (I live in Belgium), but it might affect the treatment somewhat, as well as the pain suppressors. Also take one day at the time, and be positive. They can do a lot these days. Good luck, and thinking of you both

lincolnj8 profile image
lincolnj8

I started with an alkaline phosphatase of 3000. plus 3 days in the hospital. Surgery was not an option with mets everywhere, bones, lymph nodes and organs. A month later was on Zytiga, prednisone with Lupron shots every 3 months plus Zometa infusions every month (to keep bones strong). Got better every month. Now 14 months later, leading a normal life. A lot of adjusting you know, but what's out there now is amazing. This forum eases a lot of anguish and worry. One fellow told me last week, I've been going at this for 20 years. I also have pain in my ribs. If your husband is active like me, he'll have pains here and there. Then he'll wonder if its old age or the pc. My way to fight this is only one proven way to slow this beast. There are many other proven ways you'll find on this forum. And yes it was scary at first. My poor wife didn't know what to do. We feel your pain and worry. Hang in there, things will get better.

tom67inMA profile image
tom67inMA

Welcome to the group. I'm going to go against some other suggestions and say you just need to find a competent oncologist quickly. The treatments when first diagnosed are pretty standardized and are likely to work. Getting started with treatment ASAP is important right now.

I picked a local urologist using Google, and he referred me to an oncologist. So far I've been on lupron, had radiation to a met on the spine, and just finished chemotherapy. My PSA went from 216 to 0.02, and alkaline phosphatase from about 900 to 40. That's without major changes to my diet, though i did lose 10 lbs during radiation.

Finding the best doctors can wait until later, or if the first line treatments produce disappointing results. Right now getting on hormone therapy is most important, and just about anybody can inject it successfully.

Exercise and eating healthy are important in that better overall health makes it easier to deal with treatment and fight the disease, but they provide a benefit over time. It's okay to have comfort food now while coping with the diagnosis. Make diet and exercise changes gradually when you can. This will be a long fight.

monte1111 profile image
monte1111 in reply totom67inMA

That is really good advice.

in reply totom67inMA

👏

larry_dammit profile image
larry_dammit

Sorry to hear the monster is closing in on another brother, first if you have not gotten to see a oncologist do so. The ct scan needs to be with contrast or they will miss the cancers. Me stage 4 with Mets August of 16. My Doctor found the cancers after ordering a blood panel. I had pain in the ribs like a broken rib,couldn’t take a deep breath for the hurt. My Alkaline came back at 900 ,the ct scan light up like a Christmas tree , doctor,urologist were arguing about what type of cancer but the oncologist had a biopsy taken and proved it was prostate cancer. 6 rounds of Taxotere ( Chemo) lupron and Xgeva shots monthly for the bones and after the chemo. Xtandi as a follow up. The guys here on the site are more knowledgeable than I on the technical terms but I’m telling you my story at 33 months. Good luck to you 🙏🙏🙏🙏

in reply tolarry_dammit

That’s an amazing journey ..

Litlerny profile image
Litlerny

Welcome to the monkey house. 🐒 I understand your terror and anxiety. I think all of us in here started out with the same feelings. But you have plenty of reason to have hope, and to be thankful that your husband’s diagnosis was now and not 10 or 29 years ago. You are just starting out. Take a deep breath, collect yourselves, shake off that initial shock and anxiety, and get ready for a long journey.

No doubt your lives and priorities will be changed forever, but it’s not all gloom and doom. I’m 4 years into a Stage 4 oligometastatic Dx. On the new standard of therapy (Lupron, bicalutamide, and chemo) my PSA has been undetectable until the last month or two. It has crept up slightly to 0.19, but I am almost totally asymptomatic, and have no bone pain, in fact my one original tumor on the bottom of my pelvis hasn’t “lit up” the PET scan in over 2 years, including a very recent Axumin scan, and I only have moderate fatigue from the drugs that I’ve learned to accept and adapt to. I still golf or go to the driving range 3-4 times a week, and have very few limitations in general. There are many people in this forum who are 10 or more years into a Stage 4 metastatic diagnosis.

I’m with Tom67. I think the first step should be to find a really good medical oncologist who specializes in treating prostate cancer, hopefully one at a major cancer center. I live about midway between the Moffitt Cancer Center in Tampa and the Mayo Clinic in Jacksonville. I, as they say, “vetted” them and opted for the Mayo Clinic. They have been great. If your hubby’s Dx is of Stage 4 metastatic PCa you will have already eliminated several treatment options available at lesser stages, and the initial therapy no matter where you go, and depending on his individual situation, is pretty standard. He should respond very well to it for a long time. After that you still have a lot of secondary treatment options. There are a lot of new drugs that individually or in combination can slow down the progression, immunotherapy, gene targeted PARP inhibitors, etc., and more are in clinical trials right now. So there is hope.

Adjust to your new reality (I know...easier said than done) and gird (I always loved that word) yourselves for the long road ahead of you. Don’t buy in to what you see in Google hits or You Tube videos. There’s a lot of really bad advice out there. Most of the gloomy statistics are 10 years old, based on ancient treatment protocols prior to the new generation of treatment options, and (at the other end of the spectrum) baking soda isn’t going to miraculously cure it. Stick with proven therapies and use complementary (but not alternative) measures as you and your oncologist feel will be beneficial. This includes supplements, diet, and exercise. Ease into them. There’s no evidence that going from being an omnivore to a vegan will add anything to overall survival, and for most it is too restrictive. My Mayo oncologist said a Mediterranean diet might be good, but didn’t force it on me. Exercise...any kind, even if it’s just walking is important. Having a positive outlook can make a huge difference. Be thankful for your blessings. Your hubby is fortunate to have you as his wingman/woman. My wife has been my cheerleader, support system, and a saint and in spite of her own cancer issues she has had my back throughout this whole process.

I hope to be reading your posts in five (or more) years. Best wishes to you both!

Harryhector profile image
Harryhector

Read “Cancer Free” by BillHenderson and Dr Carlos Gomez. It’s an easy read and will provide you with smart diet advice and many alternative therapy choices to add to your traditional treatment.

Urang profile image
Urang

I have prostate cancer and it is the aggressive type... I have been fighting it for over 20 years and it has never been in remission.. It metastasized to my spine in about 2008 and the tumor shattered two vertebrae in 2018.

While you have time, live your life to the fullest! Can you survive this? Yes, for a time anyway. I have made it for the last 20+ years. Carpe Diem!

Kaliber profile image
Kaliber in reply toUrang

you da man .... if there ever was living breathing proof that someone can hang in there and still have a life with PCa ( even the ugly type you have ) , you are the shinning example for all of us. that and with hundreds of trials and new drugs in the pipeline , if even only one percent succeed ( and it'd statistically be more than that ) , thats still a whopping lot of hope - help that is headed our way. PCa is not anywhere near all the doom and gloom I experienced when I first found out ( let alone soiled myself ay ahay aha ). we got this ... all of us !!!

monte1111 profile image
monte1111 in reply toKaliber

Just wait till j-o-h-n finds out you soiled yourself!

Kaliber profile image
Kaliber in reply tomonte1111

yea ... don't tell him tho. those little pods with the ying yang on top are marvelous for stains too. phresh as a daisy ... kinda

j-o-h-n profile image
j-o-h-n in reply tomonte1111

Now let me see..Poop in your overalls, is it called Dung-arees?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 2:39 PM DST

j-o-h-n profile image
j-o-h-n in reply toUrang

Carpe diem, (Latin: “pluck the day” or “seize the day”) phrase used by the Roman poet Horace to express the idea that one should enjoy life while one can. ... The phrase carpe diem has come to stand for Horace's entire injunction, and it is more widely known as “seize the day.”

Had to look it up.... My New York City Roman is a little rusty. So thanks and X IV OUT Brother.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 12:28 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

OH !!! ....... HUH !!!..... I thought it was some kind of fish in jeans .... shows what I know !!! fancy stuff for me !!

j-o-h-n profile image
j-o-h-n in reply toKaliber

That was my first reaction.... carp fish in dungarees but then realized it must be Latin... since Urang in Latin means "who is it, anyone there?".... 10 4 Out....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 2:30 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

wow thats heavy stuff ( he's sneaky huh ?? gotta keep an eye on him ) .. really great people here and an advanced linguistics education to boot ( and 24 letters in the Latin alphabet ... ) ... WOW kewl. works for me. please note that I fought off ( and it was hard ) some double entendre additions to a part of one of the posts above as well. you'll know where it PLUGS IN at ( sorry can't help myself ) . wavy gravy , smelly jelly etc a ya haya haya haa eewwwwwwwwwwww . shucks ......

j-o-h-n profile image
j-o-h-n in reply toKaliber

"please note that I fought off ( and it was hard ) some double entendre additions to a part of one of the posts above as well. you'll know where it PLUGS IN at ( sorry can't help myself ) . wavy gravy , smelly jelly"

JUST LET LOOSE......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 3:38 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

keep it up big j-o-h-n , I'm sure beyond doubt that everyone that logs on here can use a little levity to lighten things up along the way. probably a LOT more than that sometimes. . no better guy than you to hand out those grins or even shock people out of " it " a bit ( shift their focus ) .... definitely uplifting , it's all good. we don need no stink'in pouty faces around here ... just a smile from j-o-h-n and a cold beer ( or your hydromorphone which ever seems best in the moment ).

j-o-h-n profile image
j-o-h-n in reply toKaliber

hydro-mor-phone? Sorry, but I don't use a wet cellphone anymore than most people do. Thanks for the offer of cold beer.

youtube.com/watch?v=wUuLNGc...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 4:56 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

a couple of those m4s will definitely ring my ( telephone ) bell. back in the day, I never saw a beer that " didn't " have my name on it !!! that video makes me thirsty, feels like I'm back in Texas again ( OMG , my wife is from there ... see !!! beer IS bad for you ) .

I'd buy you a beer anytime j-o-h-n ........... ( think " Montrachet " if you want to buy the drinks tho )

Molman profile image
Molman in reply toKaliber

Now here is a man who knows his wine. After months of not being able to enjoy my wine, because my tastebuds changed because of medicines. Now I can enjoy my wine again, but in small measures.

Kaliber profile image
Kaliber in reply toMolman

I can smell and taste my cancer in my nose buds, taste buds, fecal stuff, pee .. even under my arms. I wreak of it I guess. probably same thing that a dog smells in people. been that way for a number of years now. a smell kinda like that plasticizer chemical in those big plastic balls that wafts in the air at Toys-R-Us. had it way before the treatments. probably a bunch of people on here the same way. I have a good memory tho ..... a nice light crisp - dry Pomerol or St. Julien ... in the afternoon , a plate of soft assorted fromage wedges and some water crackers ..... those were good days. I have noticed tho that the smell - taste does seem to track closely with my PSA score. in the last couple of months, I have seen that the chemical aroma has diminished to nearly non detectable quite a lot of the time as my PSA continues to drop on my Xtandi - Lupron regimen. seems like it's possible that a person can actually track his own cancer antigen levels when they get low ( when they are high they overload everything ) ... if you have the buds for it. in another life I could probably have been a food or wine critic , stuck with medical instead. I don't necessarily think thats a good thing tho ..... what about seeing ( smelling ) it disappear and having the buds to " know " when it's acting up or returning with a vengeance !!! iff'y either way.

in reply toKaliber

What’s that I smell ?..... Very descriptive ... not exactly the smell of success ...

j-o-h-n profile image
j-o-h-n in reply toKaliber

Thanks but I'll take chocolate chip ice cream (two scoops) instead. Sure i'll buy as long as you treat me to a couple of cans of:

amazon.com/Pussy-Natural-En...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/01/2019 1:29 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

hahahah ah ah ahahaa a h ........ well Buddy , drinking it from a can is probably the only way most all of us here ( getting treatment ) will ever get close to that again. y ahay ahaya ahay aha a I was looking on Amazon tho ... for a pair of mink padded eyebrow tweezers ( didn't find any ) .... probably get one of those large magnifying swivel makeup mirrors too ( if I found the tweezers ). that way, at least I probably could stop peeing on myself all the time ( since my manhood disappeared up into my abdomen ). all those softball sized cancer nodes and the " boys " fighting each other for real estate inside there ( I hope the boys are in there < insert hands on side of head --- surprise emoji here > ), probably not pretty. uh .......... TMI ( too much information ) .... huh !!! .

hummm ... wonder what that drink smells like ?

btw: notice how nicely this segues into LuLu700's pluck it post below ........ or not.

j-o-h-n profile image
j-o-h-n in reply toKaliber

Yep I saw it. Lulu is quite a LULU..... Geez you're a day late and a dollar short... I just sold a pair of mink padded eyebrow tweezers and a large magnifying mirror at my garage sale yesterday. Some guy wanted them for his incontinence problem. Shoot if I only knew you were looking for them. I am still looking to sell a pair of two inch rusty Steel Spring Clamps, are you interested?

BTW That drink smells like it tastes. 10 4 OUT.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/01/2019 4:22 PM DST

Kaliber profile image
Kaliber in reply toj-o-h-n

two inch rusty steel clamps ?? ....... hey that'd be bragging for me .. thanks to Lupron ya hay ahaya aha a ( ok ,.... i'm blaming it on the Lupron anyway ). I'm still stuck on the thought of a " USED " pair of mink padded tweezers eeeewwwwwww

" BTW That drink smells like it tastes. " .... once again .... just add in another eeeewwwwwwwwww right here. yikes ... dunno tho ...... maybe I could splash it on me like a bottle of Channel #5 and it'd go with my stylish new set of cancer treatment man boobs. just say'in ........

you have some interesting stuff at your garage sales .... I'd need my surgical gloves / mask and some hand sanitizer to come see it tho.

keep the shinny side up ........ see you on the flip flop.

73

in reply toj-o-h-n

Hahaha

in reply toj-o-h-n

Great lyrics and talent. You know how to pick em.

in reply toj-o-h-n

“Dave’s not here man!”

in reply toj-o-h-n

Pluck it!........or Oh , I mean ,,”seize the day “ Horace the poet knew something. Carpe diem . Thanks j-o-h-n. “ Pluck the day” my new mantra...

in reply toUrang

When Urang, .....people listen .....like E.F. Hutton . you inspire a peasant like me with your truth and endurance.. Keep rolling .. carpe diem

Kaliber profile image
Kaliber in reply to

all this talk about carpe diem is making me hungry for some sea food ( fish and chips ? ... OK I'm easy .. whatever ) .... probably better ease back on those brownies a little bit !!!! " hey Siri, where is the closet Captain Jack's Seafood Shack ?? " ... next door to the Dive Rite INN.

in reply toKaliber

How about an H salt fish & chips ? Or add a little Carmel to the brownies .. ? I’m a fan of most seafood .

Kaliber profile image
Kaliber in reply to

ok ....... that sounds really good .... or .... just pour that Carmel all over the fish & Chips .. toss on some maraschino cherries ... a mountain of whipped cream ... some crushed up brownies...... half a shark steak ... crushed cashews .. sprinkles .... handful of raw oysters .. and ... and ... yummmmmmmm seafood .... ah yes ... when I see-food after I eat a brownie I always want to eat that too y ahaya ya a ( and everything - anything else food like within visual range )

in reply toKaliber

That sounds like Henry the 8th’s diet, might cause gout. Good that you have such a robust appetite. Take care Kaliber.

Kaliber profile image
Kaliber in reply to

I probably look a little like ole Henry too ! y ahaya haya ah right before my first treatment I lost 18 pounds a week for a couple weeks in a row. freaked out my wife pretty good... so she started porking me up a lot just in case. thinking it would take longer to tank if I had farther to go I suspect. at the time, even a week or two more time looked pretty good. pretty much anyone - everyone eating " that type " of brownie will have a VERY robust appetite until the THC wears off. toasted ( decarbed ) Sugar Brown Rose Sativa additive in those brain numbing puppies. California is a recreational - medical cannabis state. brownies like that are $8 - $10 apiece if you buy them in a convenience store or have them delivered to your driveway. it's way better to bake up a couple pre mix boxes yourself. it's $80 - $90 a pan of top drawer brownies if you buy them ... buy a couple dollars of premix and pluck a few buds / flowers from the back yard garden and you save a whopping lot of cash over time. ( everybody in the state can grow 6 plants in the yard .... up to 99 plants with a medical card ). cannabis will quickly bust up that Xtandi - lupron nausea ... and can be quite uplifting while doing it. great for those awful muscle and bone joint pains ... and will jack up your appetite as well.

in reply toKaliber

I’m also a fan of all green products. Brownies from dispensaries are never sugar free. I cut all sugar . I cheat with dark chocolate .. I lost about 60 lbs during initial treatments .. I came back up 30 . To me the plant is medicine for body and soul . I’m totally on board and don’t plan to stop .... anytime soon. I don’t have an appetite without thc... Take care

Kaliber profile image
Kaliber in reply to

cannabis has it's place , like anything tho, It gets old if done too much. lots of times I don't want to be that strongly " medicated " ... or might want to go out or something. I wouldn't want to drive on it when strongly medicated. for me , when " medicated " to therapeutic levels , I have to / want to stay home. for decades I kinda considered cannabis to be more recreational / intoxicant than anything, I dismissed it's medical value as being marginal. after I got sick, experience with it shows ( for me, at least ) that it indeed does have several valuable and useful roles medicinally ... way more so than I expected. my wife is the same way ( as you ), she doesn't like to eat the brownies for the same reason ... too much sugar. I make my own vape carts with the commercial kits available on Amazon and eBay , have a titanium nail dab rig, bong etc. for her since she is more of a smoker. I could guess that a person could pretty easily make sugar free cookies.

in reply toKaliber

Sugar free easily made at home. I inject pure oil twice daily. The dab is a pure form of smoke. Met a young man that had crazy seizures which drs couldn’t figure out . Started dapping and no more seizures. Defiantly don’t dap and drive. Like anything , you build up a tolerance to thc . I have . I’ve seen positive effects on many people battling cancer .

Kaliber profile image
Kaliber in reply to

dabbing is still being done here but the " scene " seems to have kinda moved on to vaping as being handier and more versatile ( those little pencil vapes work amazingly and can be used anywhere ). I squirt my own BHO - crumble ( safely out of doors , of course ) and now use the bho to make my own vape carts. there are many DIY vape kits and a wide range of bottled cannabis strain flavor / smell terpines available on Amazon and eBay. it's easy to take a gram of squirted bland stem - trim and leaf bho and turn it into a full cartridge ( 200 - 400 puffs ) of delicious Jack Herrer or NYC Diesel vape nowadays. kinda like cherry coke ... you know it's not actually cherries in there BUT HEY !! it tastes great and satisfies. all this for pennies on the dollar when compared to paying premium prices for top drawer flowers. ain't progress great ? yahay ahaay ahaya aha

in reply toKaliber

You’ve got it figured out pretty good. Vaping is great for traveling . I’m hip about it’s out of price for the common guy to smoke from a dispensary . In Humboldt co. The new law is you must sell your product to them at $500 a lb. ridiculous ! You can’t grow it for that. Dispensaries are not going to drop prices .they are cash cows indeed. Mad I don’t have one...This is knocking mom and pops growers out . Now there are 1 mile square grows . Big business for the state..Once again they knock out the small family farmer.. corporate weed is coming.

in reply toKaliber

In Az no one can grow within 25 miles of a dispensary . That knocks out 99 % of the people . A group of lawyers set up this monopoly and bought up the rights to run it ...

Kaliber profile image
Kaliber in reply to

that is both bizarre and vile y ahaya hay ahah a. California passed it's first pot bill ( prop 215 ) back about 23 years ago and people started growing at home legally. of course , cannabis was popular here since the late 50s or earlier, smallish growers have traditionally been ignored in most parts of the state. when I drive around the town on my MC, the fragrances of differing species flowering is sometimes overpowering and wonderful. with all the " auto flower " species available , growing is easily a year round thing ( 3 - 4 crops a year ). if commercial interests tried that here, there would be mayhem in the streets. I send up my Phantom 4 drone from the house now and then ... there's more neighborhood people into growing than I ever expected to see as an old hippie. remember that head shop poster of a granny in a rocking chair puffing on a big joint ? rather than being novel / funny as that posted suggested, it's the norm nowadays yahaya ya ayh ( hey !! I'm a gramps doing the same thing hummm .. reality check )

Urang profile image
Urang in reply to

It hasn't always been easy and at times darn right upsetting. One treatment caused my kidneys to shut down, another caused (Bisphosphonate-related osteonecrosis of the jaw) (BRONJ). You can't dwell on the past. Keep moving forward to the next treatment and a chance of being cured. I am still looking for that magic bullet... Carpe Diem

in reply toUrang

Was that a bone med that caused the jaw issue?

Urang profile image
Urang in reply to

Yes, it was, but you have to keep in mind that everyone responds to different drugs in different ways. We are not all alike, case in point, our finger prints or DNA. So what works for one might not work for others. I look at them as bumps in the road towards a cure.... Still looking... Carpe Diem

in reply toUrang

Good attitude.. you are right . We all handle things differently. I’m just curious because I haven’t done any bone meds yet. Me too. Take it easy ...

Kaliber profile image
Kaliber in reply to

I wouldn't stop the bone strengthening treatment ( Zometa ) I get because I need it badly and I don't want bones in my body to disintegrate any more - sooner than I have to. ( Urang is the perfect example of the awful things that can happen with bone disintegration from the tumors ) still the bone treatment i get is enormously painful and unpleasant. it lasts for days and lingers in differing ways for weeks. I get mine in the mornings ( this coming Monday for example , preceded a few days by a couple of blood tests ) and it will start hitting hard by late afternoon and the worse part of the side effects last 3 - 5 day after. the morning after the infusion being the peak of the painful part. my first one was scary a day after the initial infusion with bone rattling pain - chills - uncontrollable shaking ( like being cold ), panic attacks and finding myself having trouble breathing - gasping off and on from all the thorax pain. just imagine the worse case of the flu you have ever had and multiply that by 10X. after the first couple infusions the side effects taper off a bunch for me and the treatment becomes more tolerable, ... it's all relative tho... pain is pain - awful is awful yahay ahay ay my best cancer pain med, dilaudid- more powerful than morpine , will barely touch it. in my case I have mets scattered literally all over my skeleton, cancer caused pelvic bone deformations, hefty spinal mets etc. and I have an underlying severe case of bone joint disease. every single joint in my body lights up in the nuclear uptake scans they do on me. Onc Doc said I was DX fairly late but I am responding well to the Lupron - Xtandi regimen ( start PSA of 1400 and 6 month PSA of 0.4 and dropping still ) . when I get the chills SE hammering me I can jump into my Jacuzzi to warm up ( wonderful and works almost instantly ) , breathing a few huffs of that canned sports oxygen is beneficial , and ( besides dilaudud ) surprisingly Ibuprofen is VERY beneficial for the muscle pain part. sleeping 16 hours a day gets into the mix too. side effetcs ?? ... bring it on ... who cares ay aha ya haya ahah a when you need it , you need it. we all got this ... every single moment of bone help that Zometa provides me is well worth experiencing the SEs and then some.

Kaliber profile image
Kaliber in reply to

all this stuff ( meds , disease ?? ) is causing some of my teeth to crack and bits fall off a little. I've been having those temp acrylic caps installed in the intrem ( why pay 20 grand for a full replant at this point ? ) that plus I too have the mandible joint issues / pains like many here do. every time I go to get my monthly Zometa bone repair infusion the nurses give me the " stay away from dentists " lecture because if they even nick my jaw bone it can cause an awful case of the BRONJ that Urang speaks of . for as long as I get those infusions I just have to live with looking like a stereotype ay ahaya haay aha. it's all good !!

in reply toKaliber

Sounds inviting .. damm

in reply toKaliber

It figures ,that adt drains our teeth,bones, muscle,just can’t let it drain my soul.

JimVanHorn profile image
JimVanHorn

I agree with what has been said above. I was 62 when diagnosed with PCa. I was given 42 radiations and my PSA came down to 0.2 . Then in 2011 I had a bone scan and they found bone metastases. I had 30 more radiations and started Lupron injections every 3 months with 3 weeks of Casodex to stop a testosterone flair. I stayed on Lupron (Eligard - the generic) for 6 and 1/2 years and now I am cancer free. I got several opinions from oncologists, made a decision, and followed the plan. Each of us is different. Our cancers are different, in different places, involving other tissues, we have other diseases and genetics, our diets are different, and we have different insurances. But there are many similarities and many new medications on the market in the last 15 years. So I made it and so have many others. It has been a year now since I have had any treatment and PSA is still 0.006 . There were 2 doctors here in Orlando, both were urologists and well respected. They both were diagnosed 15 years ago. One chose to have radiation pellets and the other had a radical prostate surgery. They both were dead in 1 1/2 years. So why an I telling you this horrible story? They had all the knowledge to survive, but they bath waited too long to start therapy. PCa is usually slow growing and I am not saying you have to rush into some treatment without checking it out, but not making a decision can be a problem. Please ask questions on this website and get opinions. If you can not afford a therapy, ask others what they did. I recommend you look up the drug "Lupron" and read the part about "Using the drug in Prostate Cancer" not women using the drug for multiple child births. Read how it works and the side effects. Find a good oncologist and do not believe that all oncologists are the same and know what they are doing. The same with radiologists. I wish you well and just keep truckin'.

abfed profile image
abfed

Diagnosed June 7 2017 Stage four Gleason 9 all 12 cores had cancer in them. Biopsy should be 3T MRI guided. No radiation and no chemo other than drugs. On Elliguard and Xyandi now, Zytiga has failed as PSA has been going up. Alk Phos about 1000 and PSA close to 100 before treatment. Lowest so far is 4.5 PSA. Alk Phos went back to normal but now is above normal. Latest Nuclear Bone Scan show the disease is advancing. I have hot flashes and weakness but life continues. I still believe I can beat this.

in reply toabfed

You can ...keep on trucking ...

AAhealth profile image
AAhealth

You found one of the best resources possible by joining health unlocked.

The information and life wisdom here is phenomenal.

We are on your side and we understand.

Try to take care of yourself and calm your fears. It's hard but crucial. Deep breathing and Mindfulness helps alot.

in reply toAAhealth

Triple A advice..

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

Great advice..as usual ... Now tell me how I can kill my ex-wife and get away with it. 💣

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 5:05 PM DST

in reply toj-o-h-n

First thing. Don’t tell anybody. But what’s the point now, you are over it?

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

I never will............. She's like my shadow.....

youtube.com/watch?v=e5hXtGk...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 9:48 PM DST

in reply toj-o-h-n

Amazing song edition never heard that before. Ol’blue eyes had over 500 songs.. “” need a crowbar to separate my shadow and me. “ Great stuff . Thank you

JimVanHorn profile image
JimVanHorn

When women use Lupron the pituitary releases Leutinizing hormone. This hormone causes any eggs that are close to maturity to release into the Fallopian tubes. For years women could have artificial insemination with Lupron injections to help become pregnant. However, often there were multiple children (maybe 4 or 5) and some with deformities, so this not done as often as it used to be done. This is why Lupron talks about women's use before men in the drug package insert, because it was first used and approved for women. So just keep on truckin'.

in reply toJimVanHorn

Wow JVH , amazing. Did not know. Just glad we didn’t have any Lupron kids. Take care.

JimVanHorn profile image
JimVanHorn in reply to

God knows I tried!

monte1111 profile image
monte1111

Yeah, tell me about the music! The Kaiser waiting room, filled with desperate cancer patients, played "soothing" music along with videos of waterfalls and etc. I complained to several of the staff about the funeral parlor music. They actually seemed surprised and said "You don't like that music?" Almost every patient looked dejectedly at the floor as if it was their last day on earth. Nothing changed. So I did a written complaint. I received a telephone call that very same evening. They would look into it. Nothing changed. Last time I was there, apparently the system was down. No funeral music. People were talking to each other and laughing. I realized then that the funeral music was there for a purpose, and will be back soon. THEY don't want anyone talking (and comparing notes), THEY don't want anyone laughing and believing they still have a life without THEM. Do not attempt to adjust your television set. You are just another brick in the wall. Enjoy.

in reply tomonte1111

Another brick in the wall.. enjoy those birthdays., lots of smiles

tom67inMA profile image
tom67inMA in reply tomonte1111

Just after my diagnosis I was in a waiting room and the music was a country version of "Yesterday" by the Beatles. I thought it was in very poor taste.

850 to .08 wonderful

bellyhappy profile image
bellyhappy

I was diagnosed in Nov 2019 with Prostate Cancer and it has also metastasized to my right hip bone. PSA was around 126. FYI, I am 60 years old. Since the treatment, my PSA had dropped to 2.7. Like you, I was worried sick...i started to imagine much unpleasant thought, etc... With my mind centre around GOD, have a good oncologist, modern medication, and many good and supportive friends, it could be very meaningful journey. Have a positive expectation of good attitude also helps a lot. Besides the side effects, I am back at work since January, doing my regular walks, gym and swim. Life may not be like what it was used to be but you will manage. God bless

Shooter1 profile image
Shooter1 in reply tobellyhappy

JUST THE NEW NORMAL WE ALL LEARN TO LIVE WITH.

in reply toShooter1

Abbey Normal

in reply tobellyhappy

We walk the line... like Johnny cash, we are all just trying to stay out of “ The burning ring of Fire”” On the edge with APC... whoohoo what a ride... castration and all!

cwc1 profile image
cwc1

It will be Ok. I was diagnosed 2 years ago stage 4, PSA 80, CTscan - negative, bone scan some mets at hip at right rib, next bone scan showed an improvement. Started on Firmagon monthly now only 6 month Lupron.You have to believe and think positive. Know some men has lasted many years after diagnosed and I expect to. Go on with everyday life working and exercising and eating healthy diet and get good oncologist / urologist team. PSA .2

Rexwayne profile image
Rexwayne

Welcome. I sorry to me you under the circumstances. I just want you to know there is hope. I was diagnosed when I was 52 and I have been fighting Prostate Cancer now for 13 years. S

Enough of me I would suggest that you and your husband start doing your home work. Research everything you can. Knowledge is power. Stay away from survival rates as there are many new treatments now and more coming up. You want to know what treatment your doctor wants to do. Understand every cancer is different and every person is different so you react differently to treatments than others do. That is why you do research to figure out the best treatment for your husband. Your Doctor can also help you decided onthe best pain medication for your husband.

Keep active as much as possible. Eating and keeping his weight up is very important also. I have learned over the years that “It is what it is”. Keep going and no matter what you keep fighting.

You keep learning. Reasearch and be proactive in your treatments. It’s his and your life so do what is best for you. There will be victories and setbacks but you keep going no matter what. You research by going online and use google. Just about everything you want to know is there. Maybe to much so know when to take a break from it. I suggest you stay away fro statictics.

The best advice I can give is what works best for me. I worry about things like everyone else I research a little, then pray a lot. After that I give it to God. It’s in his hands. Jesus is the great healer. Only he knows what the future holds. Many times after I do this what to do just comes to me.

All the worry in the world will change nothing. So I give it to God. He can watch over me and take my worries away from me.

It kills me watching my wife struggle with my disease but we try to keep a normal schedule and live life the best we can around treatments. That is really all I can tell you. My faith sustains me. I hope this helps

in reply toRexwayne

I salute your resolve during these 13 yrs.

Kaliber profile image
Kaliber

wow MC eh ?? niiiiice ... hay !! I used to ( when I lived in the Haight ) hitchhike up there across the bridge and wash Maserati hubcaps and carry out those blinged out monogrammed garbage cans for pocket change - spending money and to get a whiff / glimpse of the good life !!! yahaya haya ah I always dreamed of living in one of those floating palaces at the downtown docks too. kewl ...

Dear CantChoose .. my heart and prayers to you both . Apc is a horrible disease ..It’s intentions are not good for any of us . I want to tell you that you are not alone .Although this disease can isolate our thinking into gloom ....we all fight the same foe....Fix the arm fix the pain and then take a vacation . 🙏🏼🕊

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