Really pleased: Finished Chemo end of... - Advanced Prostate...

Advanced Prostate Cancer

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Really pleased

Zetabow profile image
48 Replies

Finished Chemo end of May and saw Oncologist yesterday, PSA went from 1386 down to 0.05, Lymph nodes shrunk 1.6cm to .6cm and significant reduction in Mets (it was whole skeleton). He said considering the condition I started in he could not have asked for a better result. Dont have to see him until Nov and he thinks I shouldn't need Chemo for at least 9 months.

I still have lot of pain but I saw a pain specialist a couple of weeks ago and she has really helped get this under control and enjoying some quality of life again.

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Zetabow profile image
Zetabow
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48 Replies
NPfisherman profile image
NPfisherman

Great response--I take it you are on ADT now, and hopefully abiraterone, enzalutamide, or apalutamide. For the next round, you may wish to look at adding radiation to the tougher mets and hyperthermia--Talk to your MO and possibly an RO---see article below:

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

As stated previously, I endorse a multi-pronged attack early on--hit it hard--don't forget some exercise and weights for bone strength as your pain allows--even light weights help maintain bone mass...Keep us posted--best of luck to you...

Don Pescado

That's great news. Was this early chemo or after castrate resistance? Would you mind sharing your treatment history with us?

Zetabow profile image
Zetabow in reply to

56 years, Diagnosed Gleason9, stage 4 last Nov, almost immediately went onto Chemo. Initial symptoms were Rib and Femur pain and fatigue, scan shows me lit up like Xmas tree and got right into the Marrow in both Femurs.

ADT drug using is Diphereline, Platelet and Hemoglobin was very low and needed transfusions, I was pretty poorly in the new year with Neuropathic pain and spasms.

I think because I'm Pro sportsman-Coach and I was already in good physical shape and with no other medical issues, with the help of a great Oncologist we we're able to turn this around.

I'm actually leaving tomorrow for Euro Archery champs in Holland, it's 5 days and doubt I will be able to complete the whole competition but the fact I'm well enough to participate is nothing short of amazing, it was a great goal to work towards and get me motivated during some tough times.

This is a great site, be strong and safe everyone.

Oldeenglishbulldogge profile image
Oldeenglishbulldogge in reply to Zetabow

Man u guys are so inspiring, I love it, thank you, . I was Gleason's 9 and had my prostectomy. Now I'm at .3. No ere tions, trying to get that going.

YostConner profile image
YostConner

Was your PSA Drop linear or did it bounce?

Zetabow profile image
Zetabow in reply to YostConner

It dropped like a bad smell lol

Tall_Allen profile image
Tall_Allen

What a great response to chemo! Nice that you get a break.

AlanMeyer profile image
AlanMeyer

Your response to treatment was terrific! It's great to hear success stories like this.

I'm sure that the ADT was a big part of it, but the combination of ADT + chemo seems to have knocked the cancer way, way down.

Some guys live on ADT alone for many years. Maybe now that the combination treatment has knocked down the cancer, the ADT alone will hold it down for a long time.

Best of luck.

Alan

tango65 profile image
tango65

Great response. Congratulations. Best of luck to you.

Magnus1964 profile image
Magnus1964

Great, time to celebrate! I hope you are on an ADT drug to prolong the work chemo did.

tallguy2 profile image
tallguy2

Awesome news!

dockam profile image
dockam

Such wonderful news 💖

2dee profile image
2dee

Wow, what great news. I started at 1303 growing 1 point a day but now between 1 and 2 since last Sep. Its great to hear that some hope for decent QOL is possible.

If pain not managed look at some of my posts for how I have successfully managed mine.

2Dee

HopingForTheBest1 profile image
HopingForTheBest1 in reply to 2dee

I am interested in your posts about dealing with pain. When I click on your screen name your profile says me you have not posted anything???

2dee profile image
2dee in reply to HopingForTheBest1

What I have learned in the past year or so about pain. I started with about 5 mos of very excessive bone pain throughout my body that migrated every few days to a different site while my mets were growing. Lots of just curling up and trying to endure the next second. Now it is generally all manageable and tolerable. Whoooopeeee.

I am down to 2 Norco a day from 8+. Doing my 100-200mg CBD drops per day. (Find that CBD high strength, 3500mg in Olive Oil rather than Coconut Oil is easier to control) I'm probably up to 40mg- THC per day now in lozenges. Once in a while some other painful malady crops up, muscle strain, back pain that's different and found that simple Motrin helped those. I don't believe that I have found workable treatment for Arthritis.

Each method resolved most of one kind of pain but it takes all of them for me to reach tolerable. I am rigorous about timing. Every 6 hours day/night.

It is likely that my Lupron helps some and possibly my Alkaline Therapy may as well. The reduction in pain means to me that I have temporarily at least slowed up my aggressive PCa. (Started PSA at 1300+ and climbing a point a day. Now between 1 and 2 since last Sep.)

I also work on heart healthy type diet and eat a lot of stuff that supposedly fights inflammation which is a great cancer booster. You can find "studies" that say anything you want about diet and cancer. You have to choose what to believe will help you.

EVERYONE experiences pain and treatments differently. I'm not a doc. So what works for me may not work for you?

Apparently mild exercise is very helpful. So exercise through a little pain may be good, in moderation that is.

Since it may be unknown exactly what is causing your pain it is difficult to judge a treatment. Experiment to see. If treatment will work it should do so within a few hours to a couple of days. Don't expect any ONE treatment to resolve all types of pain.

Wishing you luck on your journey. Keep fighting and remember that Quality of Life may be more important than difficult "cures".

BTW, I can't make a strong enough recommendation that whatever you choose I think that pain meds must be "built up" a bit in your system. I had NO luck with "as needed" approach. Every 6 hours for sure, could be 4 but take your treatment(s) on time and diary what and how along with results so you can learn and pass on to your MO about your activity.

2Dee

HopingForTheBest1 profile image
HopingForTheBest1 in reply to 2dee

Where do you get your CBD oil from, and what brand? I just started using a standard dose tincture made by Lazarus. Seems to be helping.

My Oncologist also lowered my Olaparib dose from 4 to 3 100mg tablets 2x day as my side effects could be from the med.

2dee profile image
2dee in reply to HopingForTheBest1

Lots of vendors. I want full spectrum CBD from commercial hemp, not from indica isolate.

I'm not a recreational THC user. Want to carefully control MY CBD to THC dosages. NOT promoting ANY specific distributor.

I currently use diamondCBD.com Diamond CBD Full Spectrum Olive Oil -3500mg (30ml) $209.99 sale price $419.99 reg. I have coupon codes for 50% or more off which is really their regular pricing.

Details

Available in strengths ranging from 25mg to 3500mg of CBD, in 30ml tincture bottles.

I started with lower strength 350mg 15ml bottles but needed to reorder every week. Sometimes out of stock. The 3500mg lasts about a month. Olive oil seems to retain CBD infusion better than coconut oil.

I split an oyster cracker and dropper the oil on cracker half(s) and place under tongue till mush.

600 drops in a 30ml bottle. That makes each drop a little less than 6mg. I take 100-200mg per day total. I started with about 50mg per day last year. Your mileage may vary. I'm still adjusting dosage based on how I feel. Too much doesn't cause ME any problem. Just means I spent more than necessary.

I separately use 5mg THC lozenges to carefully control dosage to 20-40mg per day now. I just want to control pain not get "high".

Test and judge for yourself what works for you.

2Dee

Myhubby58 profile image
Myhubby58

Wow, that’s really great,I’m happy for you..My hubby58 is in pain all the time.. I hope his next treatment helps him..his psa is 93 now..

grahaminator63 profile image
grahaminator63

Great news! Keep strong and keep fighting.

Nicnatno profile image
Nicnatno

Great news. The pain will slowly go away. After 6 weeks of my final chemo treatment, i started to feel more mobility like playing tennis. 6 more weeks after that, i was almost pain free. It will take time but you will get there.

Nick

alangeorge profile image
alangeorge

Zetabow Hi!

Love to hear everyday success stories however which way they are achieved. Congrats and may it all go well for you indefinitely. Sounds like you're a bit of a champion so I would guess many more strings to your bow yet ;)

May it all go well with the Robin Hood stuff hope you surprize yourself :)). Thank you so much for the post; uplifting for many of us.

Alan

bellyhappy58 profile image
bellyhappy58

Congratulation..what awesome news. It gives me a lot more confidence going into docetaxel chemo in 2 weeks. Thanj you for sharing. God bless

ucladany profile image
ucladany

Great news. Keep up the fight. Praying for you my Brother.

Wonderful, so happy for you,. Prayers always up

larry_dammit profile image
larry_dammit

Sounds like great news. Keep up the fight against the monster 🙏🙏

Geanton profile image
Geanton

Good luck god will be with you

CalBear74 profile image
CalBear74

Congratulations! Where is the party being held?

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

Geez and all this time I thought you were the boyfriend of a woman named Zeta. So it's Archery.... Now I get the bow part but not the 6th letter of the Greek alphabet ( ζ ) ?

Good news for you, keep hitting the Bullseye. <===<<<

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/03/2019 12:37 PM DST

DrWrite profile image
DrWrite

Glad to hear that. I finished mine about three weeks ago with similar results. PSA down to 7.7 and chemo effects slowly wearing off. They've bought me a year or two so I guess it was worth it.

monte1111 profile image
monte1111

Pleased as punch for you. Your goal to go to archery in Holland worked well. Maybe I'll set a goal of getting a passport. Even though I have no place to go. Enjoy.

elainea53 profile image
elainea53

That’s great. Who is your mo.

Zetabow profile image
Zetabow in reply to elainea53

Dr Saretok Estonian MO

Kaliber profile image
Kaliber

Good for you Zeta.... keep on keeping on brother. Best wishes.

Carmichael55 profile image
Carmichael55

Hiya, can i please ask you ?

what treatment were you having before your chemotherapy. Hope you stay and feel as well as you do at the moment.

Best wishes, Alan...

Zetabow profile image
Zetabow in reply to Carmichael55

Went straight to ADT and Chemo at Diagnosis in Nov

Zetabow profile image
Zetabow

Couple of the courses look hilly, I doubt I will manage all 5 days/courses. The goal is to have fun and not torture myself. Just happy to be here and see all the International competitors who supported me over the last 8 months.

MoldyBones profile image
MoldyBones

Wow, what chemo did you use? A combo or just one? That is a big drop in PSA.

Bunkerboy profile image
Bunkerboy

Wonderful news👍🏻

ForJoel profile image
ForJoel

So happy for you. Can you tell me, did they ck your pass during chemo?

Zetabow profile image
Zetabow

A little disappointed as had to retire on the first day, my legs just wouldn't carry me up the hills, took a rest and shot flat course Wednesday and managed to finish, Thursday was another flat course but pain level was way beyond comfortable and decided to quit before I damaged myself, today is hilly so didn't even attempt. For a guy that's not used to quitting it was hard to do. It's been great seeing all my buddies and given me motivation to get my strength and fitness back. So proud of my Wife, looks like she will easily sail into her 8th World/Euro title.

Carmichael55 profile image
Carmichael55

Hiya,that is excellant news regarding your PSA score. Can i please ask you, what sort of time period are we talking about.Before your chemo, what sort of treatment was you having !

Regard's and best wishes.

Alan.

Zetabow profile image
Zetabow in reply to Carmichael55

They Diagnosed me in middle of Nov and did the Biopsy within a week, the PSA was 1386 so went straight into the ADT and Chemo in December.

ADT drug is Diphereline, every 3 months and they used Docetaxel for the Chemo.

My symptoms were Femur/Rib pain and fatigue around the end of Aug I started to notice and the the Femur pain got really bad end of Oct. Doc must have suspected and just did the right blood test, she did the test on the Mon, got the results Wed and I saw the Urologist on the Friday.

I'm living in a small country with 1.3m population, The Hospitals are modern and Docs are first class but biggest advantage of such a small country is no waiting for treatments.

Carmichael55 profile image
Carmichael55 in reply to Zetabow

Hiya,

Many thank's for your updated info,my journey has just started July 4th.PSA 30 and spread to a lymph node very close to prostate.

Have had full bone,and colonoscapy

both all clear. Started Bicaltumide tabs

for 2 weeks,am now on 3yr estrodial

patch trial to control testosterone.

4 Patches applied to upper torso, and changed at home every 3 days !!!

Am due blood test on Tuesday to see if anything has changed.Will let you know what the result's are next week.

Oh the patch trial started in 2005.

Well do hope your pain gets better, and PSA stays low.

Take care, Regard's, Alan ( Uk )

Zetabow profile image
Zetabow in reply to Carmichael55

I'm pretty glad that I'm not waiting on NHS for treatment, all my treatments have gone very smoothly here with zero delay. One stress not to worry about.

Carmichael55 profile image
Carmichael55 in reply to Zetabow

Hiya,

Not sure what you have heard or been told ? Our NHS health service is the best in the world. Looking after 65million + people, have no

worries with my future treatment.

Have an NHS state of the art cancer centre only a 10 minute drive away.

Regard's Alan.

Zetabow profile image
Zetabow in reply to Carmichael55

I'm UK expat, I can tell you my facilities and treatment are way above NHS.

MelaniePaul profile image
MelaniePaul

That's brilliant news. Glad for you.

tallguy2 profile image
tallguy2

This is a great response!

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