What's my next plan of attack? - Advanced Prostate...

Advanced Prostate Cancer

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What's my next plan of attack?

Mattox profile image
54 Replies

Need help from the smart ones.Stage 4 Gleason 9, multiple bone mets.Twenty three months and have been through most of front line treatments. Radiation, firmagon,eligard,xgeva,11 fragmented taxotere and retrying zytiga just started two weeks ago.Chemo got psa down to 79 before it quit,now today shot up to 325 five weeks after taxotere. I see a oncologist in morehead city n.c.who I really like and feel he really truly wants to help me any way he can,even though it's a small hospital . He brought up trying jevtana chemo infusions,but I thought I heard on this site that most likely it would not work if taxotere didn't. Got results from last scans today and doctors said had a couple of new spots on my ribs but were small. Places on spine were improved. Any advise is much appreciated. Bill

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Mattox
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54 Replies
dlestercarlson profile image
dlestercarlson

Jevtana might work, it is a newer drug than taxotere. The side effects are a little different. I have had the Jevtana, but probably my next Chemo drug will be Jevtana.

Mattox profile image
Mattox in reply todlestercarlson

Thanks for responding, going to see what zytiga does for the second attempt. Like to find something that would work for more than a couple months

dlestercarlson profile image
dlestercarlson in reply toMattox

Keep us posted on your Zytiga test. I've mentioned that to my doctor, so that may also be an option for me again in the future. i was on Zytiga for about 16 months before it stopped working.

Mattox profile image
Mattox in reply todlestercarlson

Will do I feel the best with zytiga

Tall_Allen profile image
Tall_Allen

They approved Jevtana specifically for after Taxotere fails. It sounds like you haven't tried Xofigo or Provenge yet. There are many clinical trials you might qualify for.

Mattox profile image
Mattox in reply toTall_Allen

He did also mention radium 223 but haven't read much on this site of any long term success. I know its supposed to help your immune system and help with bone mets. I don't think this second retrial of zytiga is going to work but I feel good on it. Not a good area for clinical trials and wife and I are not good at traveling. Thanks for responding I do enjoy reading all your post. Bill

Tall_Allen profile image
Tall_Allen in reply toMattox

The best data on which to base a decision is from randomized clinical trials, not anecdotes. This is not a normal collection of people on which to base treatment decisions. Most people who are successful in their treatment don't come here looking for help.

Mattox profile image
Mattox in reply toTall_Allen

But TA don't you feel that you are helping a lot of people with your vast amount of knowledge. The average Joe here like myself hasn't a clue on how to navigate this horrible disease.

Tall_Allen profile image
Tall_Allen in reply toMattox

Thanks, I hope so. But I know I'm weird that way ;-)

Schwah profile image
Schwah in reply toTall_Allen

TA you are not weird. That’s for sure. You have a passion to use your knowledge to help others and wowza, do ever do that. I know I speak for many on this site on this Thanksgiving Eve when I say “THANK YOU - THANK YOU - THANK YOU!!!!!”

Break60 profile image
Break60 in reply toTall_Allen

You are THE MAN TA; don’t be so humble!

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

Okay TallunderscoreAllen it's time you take a curtain call.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/22/2018 12:37 PM EST

in reply toMattox

Radium 223 (Xofigo) is the first radionuclide to increase overall survival.

Here's the prescribing label for Xofigo and if you click on the "about Xofigo" it has all of the trial data.

hcp.xofigo-us.com/prescribe...

Mattox profile image
Mattox in reply to

Thanks

Break60 profile image
Break60 in reply toMattox

But xofigo is contraindicated along with Zytiga so be aware of that issue.

henukit profile image
henukit

For some switching prednisone to dexamethazone while on Zytiga gave it a second life.

academic.oup.com/annonc/art...

Mattox profile image
Mattox in reply tohenukit

I'll talk to doctor about that,going to give prednisone a second chance I truly feel better on zytiga than any other treatment

cbgjr profile image
cbgjr in reply tohenukit

My MO thinks that if it's better to switch from Pred to Dexa when Zytiga starts failing, then it should be better just to start off with Dexa to begin with.

There have been several articles about the benefits of switching from P to D, but not many about direct comparisons of the two steroids when used with Zytiga right from the start, without involving any switching

joancarles profile image
joancarles in reply tocbgjr

My PSA is starting to rise very slowly. I'm in Abirateroan. I have gone from 0.17 to 0.19 to 0.26 and the last to 0.45.

I have read this change from P to D in the forum. Have you been able to prove the change? At what time are you?

cbgjr profile image
cbgjr in reply tojoancarles

I've been on Zytiga for for only about 1 1/2 months. My MO switched from Z+P to Z+D after the first month, he did not want to wait for Z+P to start failing and then doing "the switch". I'm not sure if he's right... I cant' find any indications one way or the other. Sorry, this may not help you.

But as far as I could tell, there are no downsides to making the switch from P to D. Statistically, it appears to help. But if it doesn't, nothing was lost.

Mattox profile image
Mattox in reply tocbgjr

Thanks for info. Zytiga worked for only months the first time. Have doubts it will work now. But feel good on zytiga, I'm sure it's the prednisone.

joancarles profile image
joancarles in reply tocbgjr

Thank you. I hope everything is working well.

paulparry profile image
paulparry

Jevtana/cabazutaxel isnt as stong as docataxel in my experience and didnt work for me. Radium223 an option and radiotherapy for any problem mets.

Immunotherapy and LU177 need consideration and can be done privately in Germany or Aus. After that clinical trials or Cannabis Oil THC variety.

Thats where I am at. Good luck

Mattox profile image
Mattox in reply topaulparry

I think I'm like a lot of you here watching lu177 but realistically want ever be ever to get this drug because of price and location. Maybe if I make it long enough when and if it is approved here. I do have the best health insurance

i have a spot on a rib but they don't radiated it to small and not supportive bone, so went with a new drug called PROVENGE. all u can do is just keep taking meds and new treatments until it doesn't work anymore. no drug or treatment will last forever its just the name of the game.

Mattox profile image
Mattox in reply tocharlesmeyers1964

That is a option . Glad to have help from people that are in the same boat all of us just trying to keep from sinking.

StanC profile image
StanC

Deze sir,

Try to look at luthetium 177 PSMA 617-therapy or actinium 225 PSMA 617-therapy. The best place to take contact with is Germany. At the hospital in Heidelberg or any other university hospital. My therapy is running in the uniklinik in Aachen; contact the director prof. Dr. F. Mottaghy. Perhaps you can send him a mail: fmottaghy@ukaachen.de

This therapy is also available in the US; but Germany it is already well organised for several years.

Kind regards.

Stany

Stanyclosset@gmail.com

Mattox profile image
Mattox in reply toStanC

Thanks for the info and if I had the funds to make this happen I would sure try these treatments. But right now its just a pipe dream

Godschild62 profile image
Godschild62

Cabazitaxel worked amazingly well for my husband after docetaxel and Zytiga failed, unfortunately it only lasted about 4.5 months for him. He's on carboplatin and etoposide right now, just finished second round going to bloodwork to see if he keeps going.

Best of luck my friend, try and get radium 233 before it spreads to soft tissue like my husband.

Mattox profile image
Mattox in reply toGodschild62

Thanks for responding. Having so many people that you don't even know trying to help you is truly a breath of fresh air.

Brbnbrn profile image
Brbnbrn in reply toMattox

These people ARE amazing. Thankful for everyone here... 💖

larry_dammit profile image
larry_dammit

Hate this Monster, sounds like you may need to talk with a bigger hospital that specializes in prostate cancer, MD Anderson or Mayo for a fresh idea or approach. Fight the good Fight

Mattox profile image
Mattox

If I was closer might be the way to go,truly like my oncologist and he can put me on any treatments that are available. Can't run all over the country looking for a miracle that's not there. But I stay current and ask a lot of questions.

Toad1 profile image
Toad1

Yeh, exactly my problem too.

Wish I knew the answer.

Happy Thanksgiving!

Mattox profile image
Mattox in reply toToad1

Everyone needs to put this nightmare on hold today and enjoy your family,friends, and all the good foods

George71 profile image
George71

You can have a gene profile done - immune therapy may work if they find any matches

Mattox profile image
Mattox in reply toGeorge71

Something to think about. Thanks Bill

Roberthale7318 profile image
Roberthale7318

Considered Duke University hospital ... they have a fabulous prostate cancer team .. if you can get into there prostate cancer program , You’ll see four doctors in their PC specialties on the same day .

Mattox profile image
Mattox in reply toRoberthale7318

Thanks

leswell profile image
leswell

Happy Thanksgiving to you and yours and anyone else stopping by on our site. Far from being the best informed or smartest, we’re just fellow inquirers seeking support and advice. That said, my husband and you have much in common APC-wise: Stage Four (in his case 31 months since dx, Gleason 9, 1500 PSA to a nadir of 2 now 332, early combined ADT plus six cycles of Docetaxel, extensive bone mets, and “failed” Zytiga). He is now on Xtandi awaiting next Monday’s first PSA results after taking four capsules daily of that. I mostly want to confirm that it was possible to feel well on Zytiga in spite of the disappointing PSA results. Leswell was energetic, highly motivated in the yard and garden, eating as if there is no tomorrow (which we understand there likely isn’t), and, above all, a positive attitude with no evidence of depression. And for those blessings today, I give thanks to God, our godly heritage, caring physicians, and persons on this site such as Tall Allen for their patient instruction of the rest of us. Go well, and thanks for your Post, Mattox. Mrs. S

P.S. Third pie in the oven. Happy about that, too!

Mattox profile image
Mattox in reply toleswell

Hope he does well on xtandi it never did work for me. I feel lucky to have made it almost 2 years and realizing how much I took for granted. Will both plug along looking for the next plan of attack. Thanks for your response it means so much.

DoggieDaddy profile image
DoggieDaddy

Bill, my next line of defense would be to contact another Oncologist, namely..Charles “ Snuffy “ Myers of The American Institute for Prostate Cancer. Dr. Myers is second to none when it comes to this point. He has PC as well...he is located in Charletsville, Va. If you want a crack at this I will give you the full address as well..but there is no doubt he can be found on the Internet. Best wishes, keep your chin up.

Grumpyswife profile image
Grumpyswife in reply toDoggieDaddy

He has retired at least a year ago.

DoggieDaddy profile image
DoggieDaddy in reply toGrumpyswife

Sorry, I didn’t know Snuffy retired..you can look into Dr. Mario A. Eisenberger; he is the top guy at Johns’ Hopkins and still a practicing Oncologist; specializing in Prostate Cancer.

Mattox profile image
Mattox in reply toDoggieDaddy

Thanks but I thought I read he had retired

DoggieDaddy profile image
DoggieDaddy in reply toMattox

Sorry guys! I last saw Dr. Meyers in 2005..only had one other consultation post Surgery, LRP.

I also saw and still do, Dr. Mario A. Eisenberger at Timmonium, MD.

He is the resident erudite at Johns’ Hopkins; oh! and yes, after practicing for 46- years, he still has his shingle out.

DoggieDaddy profile image
DoggieDaddy

Sorry. It’s Charlottesville, Va.

DoggieDaddy profile image
DoggieDaddy

Oh, and BTW, it is not the charlesmeyers1964 who replied to your post.

gusgold profile image
gusgold in reply toDoggieDaddy

sure is ..that is dr. myers...had a stroke and went crazy...kinda like nalakrats

DoggieDaddy profile image
DoggieDaddy in reply togusgold

Holy cats! I had no idea.

MontyB profile image
MontyB

Hello Bill,

Happy Thanksgiving. Sorry if you answered this below but did your doctor switch you to something else other than prednisone to go with the Zitiga? I'm kind of at the same place at you in this fight and spoke with my MO about letting me try Zitiga again with something other than prednisone. She didn't think that was the best option for me at this time, but she said she would be willing to keep it on the options list for me. She recommended a trial for me...which basically consists of naraparib combined with an investigational immunotherapy agent and I have just started that. Based on some gene analysis that was done for me, she said she is excited about it and believes it should be effective for me. Too early to tell if it is going to work or not, but I am excited about some of the success stories the trial team members have shared with me.

The trial pays some expenses for me...they pay for plane tickets for me, but not my caregiver, 18 cents a mile if I drive, hotel rooms while I'm there, and a little for meals.

Anywho...many trials out there and one of those may be a good option for you, if not now...maybe sometime later for you.

Take Care,

Monty

Mattox profile image
Mattox in reply toMontyB

I wish you the best with your trial. Something like that could be a possibility for me in upcoming months

MontyB profile image
MontyB in reply toMattox

Thank you. In case you're interested, here's a link to more info about it: clinicaltrials.gov/ct2/show...

Mattox profile image
Mattox

Thanks again Bill

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