Update after chemo and a wonderful me... - Advanced Prostate...

Advanced Prostate Cancer

20,785 members β€’ 25,896 posts

Update after chemo and a wonderful meetup

dvcarola2 profile image
dvcarola2
β€’19 Replies

Thankful to this forum for allowing us to meet some of the nicest and funniest people in the world. Thank you j-o-h-n and anna for the wonderful dinner while making us laugh and giving us hope for the future. The boys enjoyed the 2scoops of ice cream for dessert 😊

On the side note, may I ask what treatment you believe works for numerous bone mets. Dondee just finished 6rounds of Docetaxel chemo and while it has helped in shrinking the lymph nodes (3 left), his bone mets unfortunately increased in number and its now scattered along the ribs, sternum, pelvis and spine πŸ˜”. Good thing though, there are still no visceral mets. He did zytiga for 7months only before starting chemo.

Appreciate your inputs.

Written by
dvcarola2 profile image
dvcarola2
To view profiles and participate in discussions please or .
Read more about...
19 Replies
β€’
CantChoose profile image
CantChoose

That's so cute! Nothing like meeting in person.

We're doing the opposite order from you for high-volume: Docetaxel now and likely a next gen blocker in the future. If one doesn't work, try the next one (probably Xtandi, although Erleada and another was also just approved). People talk about rechallenging with chemo or even BAT after. There's the radium treatments (223 in US, 177/225 overseas). Provenge, although it isn't likely to make a huge difference.

dvcarola2 profile image
dvcarola2 in reply to CantChoose

Thanks cantchoose, i hope docetaxel works out very well for your husband. Xtandi is also in the pipeline but scared of the many SEs Ive been hearing. As per our MO, provenge is super expensive here and only very few responded well to it. We are looking at Xofigo, Lu177 and Ac225 for our choices later on but we need to save up a lots and lots of money.

CaseydelaTor profile image
CaseydelaTor

Wow! It's good to see you meeting each other. Enjoy

NPfisherman profile image
NPfisherman

j-o-h-n needs to stop those double and triple scoops.....Glad you had a wonderful meet up.....had one with Dayatatime and that was great.....got a fishing tutorial from him...another meet up with 4 brothers soon...Good to hang out.... Fabulous picture--j-o-h-n, have you gained weight??

if you could provide his PSA currently and previous to current treatment.... Was his PSA rising on zytiga. ??

Has he had genetic testing and if not, now would be a good time to see if targeted therapy might work...The MATCH trial might be a choice since I believe genetic testing is included:

cancer.gov/about-cancer/tre...

The VISION trial for Lu-177 is a thought and there are several drugs under trial--ARV-110 and VERU-111....

Maybe Darolutamide if he is advancing on Zytiga----off label usage...it is supposed to work on some of the AR splice variants that others don't address--from an article listed below:

wjmh.org/DOIx.php?id=10.553...

Darolutamide (ODM-201) is a nonsteroidal antiandrogen that inhibits androgen binding to AR. Darolutamide antagonizes both overexpressed and mutated ARs (F876L), which confers resistance to enzalutamide and apalutamide. It can also inhibit AR transcriptional activity with point mutations of F877L, H875Y/T878A, F877L/T878A, and T878G [63]. Darolutamide showed negligible penetrance of the brain-blood barrier [64]. A phase 1 study showed that darolutamide was well tolerated in patients with CRPC [65]. Darolutamide is currently undergoing a phase 3 trial (ARAMIS) in men with high-risk non-metastatic CRPC

Best of luck

Don Pescado

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

at 6'1 240... they don't call me slim for nuttin.....

BTW it's the hormone ice cream that does it....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/03/2019 5:16 PM DST - Pinnes

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

Hey Slim,

A double scoop of Moose Tracks for you.... I won't tell Anna....We worry enough about hormones on this forum....

Fish

dvcarola2 profile image
dvcarola2 in reply to j-o-h-n

Dont worry john, you are slim in our eyes πŸ˜‰

dvcarola2 profile image
dvcarola2 in reply to NPfisherman

Thanks Fish for the detailed recommendations.

To answer your questions, husband did Zytiga, Xgeva and Eligard from the beginning of diagnosis in July 2018. He is Gleason 4+5 and stage 4 metastatic to numerous lymph nodes and bones (ribs, spine, pelvis). Z+X+E brought down PSA from initial 32.33 to 0.89 in Jan 2019 but slowly going up to 2.2 in April. Pet PSMA in Feb showed that Zytiga resolved numerous bone mets and some lymph nodes altho some lymph nodes started to grow in size as well. Hence MO suggested we try Docetaxel chemo. Husband felt better after Docetaxel as he no longer felt urinary pains and prostate pains. Last chemo infusion was Sept 7, 2019 and PSA today is down to 0.49. So Im quite surprised of the additional bone mets because his serum alk phosphatase is just 55 U/L and serum calcium is 2.23 mmol/L. I thought these figures will increase if there are additional bone mets? Our doctor said that we shouldnt worry too much about the lighting up of additional bone mets on the scan because it may well be just chemo flares. The impt thing doctor said is that chemo resolved a number of lymph nodes and the remaining 3lymph nodes decreased in size and PSA went down as well. Prostate is also not lighting up anymore on the latest psma scan. So he is suggesting to do Zytiga again and monitor if PSA will increase consecutively for 3months before we try something else.

As for genetic testing, yes we did that and only highly probable genetic mutation is MUTYH. No BRCA, ATM, PTEN etc.

I really do hope we can enlist for a clinical trial but there are none here in the Philippines so we pay out of pocket for all medications (sigh).

So nice to hear that you are hanging out with other good fellas here as well 😊

tango65 profile image
tango65

If chemo and abiraterone failed, you could consider the trials for Lu 177 PSMA:

clinicaltrials.gov/ct2/resu...

or the trial for Ac 225:

clinicaltrials.gov/ct2/resu...

It may be possible to get a biopsy of the metastases or a liquid biopsy to do genetic studies of the cancer in circulating tumor cells or cfDNA. The cancer could have mutations which could be susceptible to specific drugs such as Keytruda, Olaparib or similar.

There is a clinical trial for Lu 177 PSMA and Keytruda:

clinicaltrials.gov/ct2/show...

dvcarola2 profile image
dvcarola2 in reply to tango65

Thanks Tango, btw husband tested negative for Keytruda via PD-L1 test. We hope to save some money so we can consider Lu177 or Ac225 in the future. There are no clinical trials here in the Phils so we are on our own unfortunately.

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

Thanks for the compliment... it was our pleasure to meet you and Dondee....

Just in case you may be interested, Ana is the one wearing the hat... I'm the one in pink....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/03/2019 5:13 PM DST - Pinnes

larry_dammit profile image
larry_dammit

I was started on on Xtandi after 6 rounds of taxotere, plus lupron and Xgeva. Working for me. πŸ™πŸ™πŸ˜‘

dvcarola2 profile image
dvcarola2 in reply to larry_dammit

Nice to hear that Xtandi is working for you. Its in our pipeline too but im just scared as ive heard a lot of negative SEs from it. Hope you are tolerating it very well.

I've been on Xtandi while getting taxotere chemo (#8 of 10 on Wed). PSA went from a rising 10+ to .68. Yes, I have some weakness and nausea but I have actually been living a fairly active life with ocean fishing twice a week, yard work, long walks and chasing grandkids.

monte1111 profile image
monte1111

Dvcarola2! As always, the very best of pictures. But who is that imposter with you? What have you done with j-o-h-n? He even tries to pretend he is Ana, the beautiful lady in pink. Beard and mustache, NY Yankees hat. I don't think so. Where is the red mouth, red nose, red hair and funny hat? Wouldn't you all be in front of the Cold Stone Brewery? I don't see any chocolate chips in that ice cream. A cleverly disguised antenna unit to contact the mother ship? A red go bag with ray guns? Dondee with X-ray glasses and shirt insignia of the Last Jedi. And you, wearing the Earring of The Lost Tower. I always suspected. But now I know. Enjoy.

j-o-h-n profile image
j-o-h-n in reply to monte1111

See I was wearing a j-o-h-n costume/persona over my real clown self. I found that NY Yankee hat just before the picture was taken (lucky me). As far as the chocolate chips they melted before I could eat them (unlucky me). We were going to go to the Cold Stone Brewery but -

youtube.com/watch?v=2HlK96k...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/08/2019 6:19 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

It really sounds like Catherine Zeta-Jones stole that song for the musical Chicago. "He had it coming." There are thieves everywhere. Hold onto that Yankee's hat. I once stole a Military Police helmet. I was the king of the Barracks. We detested squids. But I couldn't wear it anywhere, and my fame was short lived. A life lesson; that I soon forgot. Enjoy.

monte1111 profile image
monte1111

I can't suggest anything not already suggested. I wish you two the very best of luck.

Grumpyswife profile image
Grumpyswife

Great to see what the funny guy and his wife (not the ex) look like.

You may also like...

What next after chemo?

and then zytiga. I began chemo in June with docetaxil and carboplatin. PSA at start of chemo was...

Xtandi after Zytega and then chemo

doubling every 3 weeks and bone pain increased. By February, scans were showing bone mets...

updated scans post chemo

completed scans to compare to his pre chemo scans. His full body bone scans state the following...

PSA Rising After Chemo

test and it was not good news. I finished my last chemo treatment in May and my PSA has been down...

Anyone taken a break from Lupron after chemo?

injections after their last chemo infusion. Having been diagnosed with Mets in pelvis, spine, but...