Help and hope

[Brbnbrn]

My husband has Stage IV, advanced prostate cancer with mets to the bone and intraabdominal lymph nodes. He had a PSA in September 2017 of 540 and his doctor didn't do a biopsy until late December 2017. By then, his PSA was 1250. Gleason score 10 of all 12 biopsies. He's had Casodex, Lupron shot and he's on his 3rd Texotera chemo treatments. His PSA after the 2nd treatment dropped to 54. Id like some hope and help from someone! Clinical trials, new treatments? BTW, he is 64 years old.

[Tall_Allen]

It looks like he's responding to the Taxotere, and that's a good sign. Here's an article that discusses the treatment choices available for men newly diagnosed with metastases;

pcnrv.blogspot.com/2017/06/...

[Brbnbrn in reply to Tall_Allen]

Thank you! We will read It.

[gusgold]

Lupron + chemo is one of the best first treatments out there....after chemo he can try lupron + Zytiga...there is plenty of hope and new drugs...hold off on clinical trials until you have exhausted all the new drugs...with trials you never know which arm he will be in

[Brbnbrn in reply to gusgold]

That sounds like wonderful, non-confusing advice! Thank you.

[Tall_Allen in reply to Brbnbrn]

Look at the clinical trials FIRST. In some, he may be excluded from participating based on drugs he has used before; in others, he will be required to have tried certain treatments previously. Many of the clinical trials are Phase 1 and 2 that don't require randomization. So if there is a trial for a promising new drug (like darolutamide, apalutamide, or a PARP inhibitor) or a trial for a drug that he wouldn't ordinarily be able to get until later (like Xtandi and Xofigo), you want to look carefully at the inclusion/exclusion requirements before you plunge ahead into another treatment. Also, even if it is a Phase 3 trial with randomization, he will still get the standard of care. Usually patients who get the standard of care on a clinical trial get EXCELLENT care and are closely monitored.

[snoraste]

I'm sorry to hear about his condition, and glad that you chose this forum.

I agree that the current standard of care is a good starting point for him. However, you need more genetic information before deciding which type of trials, if any, you'd want to join. Tall_Allen is correct in saying that your prior treatment, and overall condition will largely determine which trials you'll be eligible for. I'd recommend phase II trials, if at all possible, because safety and dosage has been determined, and still remains a non-randomized trial.

I would also suggest you look into "debulking" of the tumor itself if he can tolerate it. You can search "multimodal" treatment or "debulking" on this site for prior discussions.

Lastly, don't despair. There are a number of Stage4 Gleason 10's on this site who have managed to tame the beast for over a decade now. Read about diet and exercise commentaries on this blog, and VERY SELECTIVELY look into the type of supplement that may work for you (I consider Metformin and Statin supplements if you are not required to have it, although technically they are not).

[Brbnbrn in reply to snoraste]

Again, very good information. I am certainly on a learning curve here! The hope I've gained from this site makes me consider sharing the site with my husband. Thank you!

[Hidden in reply to Brbnbrn]

Within a year you’ll know more than you ever wanted to know about APC. Put him on this site. most questions will be answered with experience. I can say that 64 is not old, he can live for many years .. The key is eeking out some happiness in all of this and shaking off and not getting stuck in depression or self loathing. I know because I’ve gone thru it. After treatments and hopefully some success the fog can lift . You all will get some respit and the joy of living and loving family will prevail. He has your support. Not alone . That’s big! Its difficult the phycology for all initially but you can get him to a better place. Then it’s constant vigilance for life. Reassure him of all that he has....now after 3yrs ,I’m learning to accept my lot and I’m practicing daily appreciation for what I have. instead of self dread and self loathing about how much I’ve lost. .. Believe me I’ve been there. . . Some have diabetes, some cardiac disease, we have APC. After getting the rug pulled out from under us ,we need to get back on our feet, don’t be our own worse enemy and love our self our family and what we have.. nothing easy about any of this... with support he will endure and it’s possible to enjoy life again. Keep the faith!!

[vandy69]

Good Thursday Morning Brbnbrn,

I have been in this battle for almost 6 years (please see bio for complete treatment history).

Ask Med Onc about a Guardant360 liquid biopsy. It requires only 2 vials of blood and will provide a genetic profile of his cancer at the present time. Results could point to a different drug approach.

One of my tests revealed an ATM defect which enabled my Med Onc to prescribe Lynparza, a PARP inhibitor.

Best wishes. Never Give In.

Mark, Atlanta

[Brbnbrn in reply to vandy69]

Thank you. I certainly will ask!

[Brbnbrn in reply to Brbnbrn]

And good luck to you too.

[Ssullivan19706]

You said doctor in your post. Just want to make sure you are seeing an Oncologist that specializes in Prostate cancer.

[Brbnbrn in reply to Ssullivan19706]

Thank you... it started with his urologist. After he got the results from his biopsy in mid-january, he told my husband there was nothing he could do for him and referred him to a hemotology/oncology clinic at our local hospital. They immediately started him on Casodex and chemo post bone scan. He's done with Casodex rx and has had one Lupron shot. They said they'd like to complete 6 infusions of Texotera. He's had 3 and is scheduled for 2 more.

[Shooter1 in reply to Brbnbrn]

6 seems to be where everyone thinks they should quit...I pushed through with 9 taxotere before the side effects got to the untolerable stage. Lupron and xtandi also in mix. Yesterday when I turned down a reduced dose #10 blood tests came back with PSA of 0.139 which is just about where the last 3 have been. Seems I bottomed out at about 0.140 range. Now wait and see while I heal for the next 3 months. Follow up bone scans/ct scans/and blood tests at that point. Right now I'm feeling better every day than the day before. Unrelated back procedure next week, then hand surgery, and Orchiectomy as soon as i'm to were I can heal wounds again. Have to be aggressive with this high Gleason PC> good luck with your treatments. Hate being in this 9/10 group, but lots of great info and support.

Doug

[Brbnbrn in reply to Shooter1]

Thank you Doug. Orchiectomy surgical or medical? Good luck with your surgeries... darn physical bodies... I do appreciate the information and support. It relieves a good deal of stress for us!

[ronnie1943]

Hi, my name is Lynn, Long story but my husband is also at stage IV. PC He has bone mets and LN involvement. He's alread finished twelve rounds of chemo. They just did a biopsy on one LN, He did not qualify for Keytruda, that is for lung cancer but now found its so affective for PC. But his mutations qulified him for two new drugs, Cabozantinib, and a drug Sunitinib. We are waiting to see if my husband can get the drug. ??? I've. heard this and other clinicial targeted therapy is a game changer for late stage PC. Oh, almost forgot my husband started at age 65 he is now 74 young!!!

Best wishes to you and your husband.

Hugs coming your way. Love, Lynn Pa.

[Brbnbrn in reply to ronnie1943]

Thank you Lynn. That is VERY encouraging. We have made so many plans after he retires this August. Prayers for you two also.

[Hidden in reply to Brbnbrn]

Don’t give up the dreams... hope springs eternal. Lots of prayers..

[Hidden in reply to ronnie1943]

Very positive and encouraging to us following in treatments.. Hoping new drugs work . Thanks for doing a trial. I’m on one also.. They test you thoroughly , that a benifit.. Good luck in treatments and enjoy this life!

[ronnie1943 in reply to Hidden]

Hi, happy to hear from you and my husband and I are excited about this new targeted therapy!! Like I said I did read some of these newer drugs are a real game changer for men with advanced PC . Good luck to you also!!!

Keep us posted!!!

Sincerely, Lynn

[Hidden in reply to ronnie1943]

Sounds promising...good luck . Prayers for much love between you two.. Thank you..

[ronnie1943]

We are all in this together and we won't quit fighting or giving up hope. There are new treatments out there. Please ask about the two new drugs I mentioned, they are new and just now FDA approved. Taxotere failed for my husband. He had twelve treatments. Had so many side affects, nausea was terrible still hads it.

Take care and please keep me and all of us posted.

Prayers for you and your husband too! Stay strong.

Lynn

[Brbnbrn in reply to ronnie1943]

Lynn, couple questions: did you say Texotera failed but has still getting infusions? Dis it work at first? When did it stop working? And lastly, do you go to a cancer clinic or a specialist in pc?

[j-o-h-n]

64 years old? Holy Moly!.... he's gonna be around so long after his retirement that you'll be saying "geez I married him for better or for worse, but NOT for lunch". Have faith.

Good Luck and Good Health.

j-o-h-n Thursday 03/15/2018 5:23 PM EDT

[Brbnbrn in reply to j-o-h-n]

🤗Thank you so much John!

[Hidden]

It doesn’t mean that he will fail. Most I’ve seen have had success. Expect good things only. Don’t predict . It’s so stressful for you right now. Keep your head on. Things will get better...

[ronnie1943]

Hi, don't know if I already had send a reply ?? I'm not at 74 to computer savey!! Fist about the taxotere, Sam, my husband went through twelve treatments, it seemed to be working from all blood work etc.I think after two months treatment a cat scan found three cancerous LN's Sam had surgery to remove the largest one st 1.3cm. Three weeks plus we waited for the biopsy report, Sam has mutations for the two drugs that I mentioned to you and I few more.? We are waiting now to qualify for finicial assistance. 🙏🏻🙏🏻🙏🏻 . Sam is a patient at Lankenau hospital here in Pa. Suburbs of Philly. He goes to a female. Oncologist Dr Ali. She really treats All cancers. Your husband will be fine,there are so many new treatments and more in the making every day.!!! This thing called cancer is only a word,when it rears its ugly head we will knock it back down.!!!

Take care, best wishes!!!! Lynn.

[Brbnbrn]

Thank you Ronnie! You did fine. No one has mentioned any surgical plans yet. After the last chemo, his 3rd, he's having more side effects than the 1st two times. It's scary... Prayers to you two. ❤

[Hidden in reply to Brbnbrn]

Sorry for the increasing side effects , at some point they will wane. Just got to get thru it .. God Bless!

[EdBar]

I was given a similar DX 4 years ago, you can click on my profile to see what treatment approach I've taken. Today, I'm in a good spot, PSA is undetectable and scans are clear. Doesn't mean I'm cured, hopefully I've beat it into dormancy.

Learn all you can, get with an oncologist who specializes in PCa, be your own advocate and pray hard, God works miracles.

I took an aggressive approach to my G9 cancer, so far it seems to be working out.

One more cast...

Ed

[Brbnbrn in reply to EdBar]

That's wonderful Ed! I will read tour profile and I'm sure I'll find a lot of similarities. Many more casts to come...

[Brbnbrn]

I've been reading everyone's tx and see that they speak of Casodex and Lupron as if they continue to receive it for a long period of time. My husband onkybrexeived a 30 day rx of Casodex and 1 Lupron shot. He is only gettung Texotera chemo infusions every 3 weeks now. Does that sound normal?

[ontheroad589 in reply to Brbnbrn]

Yes, typically Docetaxel is given at three week infusion schedules...gives the body time to recover from the drug before they give you more. Casodex will be shorter term, until they get the response from the chemo they are looking for, as many MO's will re-challenge with Casodex later on down the treatment highway. Lupron is usually a 4 times a year shot, and will be for life unless he is really lucky and can get a vacation from it, but don't plan on it. Docetaxel first run should be 6 cycles, then wait a month or so and do scans to see how the disease has regressed from the chemo. Then the PSA doubling time will be your guide in the next treatment protocol....your MO may add Zometa to the mix as a bone strengthening agent, which can be as often as every 4 weeks- I get it with my chemo every other cycle (so 6 weeks apart). Good luck.

[Brbnbrn in reply to ontheroad589]

That is so relieving to know we're on the right track. Thank you for sharing. I'm going to print that and put it in my "fight" file! Good luck and prayers to you.