How Has Erleada (apalutamide) hurt or helped you?

[Darryl]

Every week, I hear stories of the negative impact of Erleada (apalutamide) on quality of life. Not in all the twenty years I've been doing prostate cancer support have I seen this level of frequency. There's one good story being told by one man in my New York City support group, but all others that I've heard have been exceedingly negative. Does Erleada (apalutamide) have more downsides than up? Please share below your experience (obviously, only post if you actually have experience with Erleada (apalutamide). Thanks

[Boywonder56]

I am in the titan trials ...for aplutimide in men w mnhm res. Pc....it is a double blind....with the req. That you be on lupron or castrated...i believe im recieving the placebo...as my side effects are no diff. Than when on lup. Only ...6mos prior...i am at this time >.01 psa....and would assume close to nil on test....ive been in trial for 23 cycles(28day cycles).

I have a ductal variant pc ...wich is suppose to keep you out of trials if i read protocol correctly but nobody has adrrssed that and i tried to ask but got brushed off....so i do it because i got mri to verify mets ...had to have one but less than 3....and i get ct and bone scans evry 3 mos for nada....so since im uninsured ..i am a willing guinea pig.....could u expand a little on what you are hearing about "earligia" sp?....the spartan trial was for non met pc....and thats how it got approved....my mets have shrunk...and prostate has too....but i believe the 3mos. Lupron inj. And irish luck are doing that. ....k

[MrkP]

I am in a trial for localized advanced Pca. I’m taking Abiraterone, apalutimide, prednisone, and lupron prior to prostatectomy. I’ve been on this regimen for 3 months. I feel fine. I’ve become a low carb vegan and eat seafood 2 or 3 times per week. I also try to do vigorous exercise twice per week and pushups and hand weights everyday. I’ve lost 15 pounds, maintained muscle tone, and my energy level is good. I have surgery scheduled in mid-January. My PSA has dropped from 10.3 to .05. My blood tests have been fine so far except for my liver tests which were slightly high and have just now normalized.

[Sankirk in reply to MrkP]

You’re not vegan if you eat seafood, however congratulations on the rest of your vegan diet. You might consider going to nutritionfacts.org, advanced cancer and see what scientific papers on diet and advanced cancer have been published.

[MrkP in reply to Sankirk]

I’m a seagan.

[pjoshea13 in reply to MrkP]

You are a Pescetarian.

en.wikipedia.org/wiki/Pesce...

& I suspect, together with low-carb, that this diet may be as good as it gets.

Best, -Patrick

[MrkP in reply to pjoshea13]

From Wikipedia, "In common with some vegetarians, pescetarians often eat eggs, dairy products and packaged foods in addition to fruits, vegetables and grains." Therefore, I say that I'm a vegan who occasionally eats fish or a seagan, I eat fish every once in a while to get B12. I'm worried about B12 supplements because most of them contain mega doses.

[j-o-h-n in reply to pjoshea13]

My nephew "the vegan" told me that in order to be a true vegan you cannot eat anything that has eyes. I told him what about broccol"i"? He tofu-ed me.

Good Luck and Good Health.

j-o-h-n Wednesday 10/17/2018 4:28 PM EDT

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

Hey, j - o - h - n,

Where can we go to see your stand-up routine??

cujoe-the-smiling-canine-terror

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

Well Mr. cujoe-the-smiling-canine-terror....

I used to be a stand up comic....

Good Luck and Good Health.

j-o-h-n Friday 11/02/2018 2:29 PM EDT

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

So Mr. cujoe-the-smiling-canine-terror....

Until they told me to sit down...

Good Luck and Good Health.

j-o-h-n Friday 11/02/2018 2:31 PM EDT

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

Keep doing what you do, Sir. We here at APC need all the levity you can provide.

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

Reply to cujoe: Thank you! I'll try but they only give me 2 hours of computer time here in the joint. Besides Big Bubba, my cell mate wants to play "He'll be the husband and I'll be the wife" again. GEEZ...

Good Luck and Good Health.

j-o-h-n Friday 11/02/2018 4:22 PM EDT

[Fuzzman77 in reply to j-o-h-n]

You're like my hilarious friend that says he's a sit down comic.

[j-o-h-n in reply to Fuzzman77]

I used to be a standup comic until they told me to sit down...

Good Luck and Good Health and Good Humor.

j-o-h-n Wednescay 08/28/2019 9:51 AM EDT - Pinnes

[tango65]

The Spartan trial recently published the results on health related quality of life. They concluded:

"In asymptomatic men with high-risk non-metastatic castration-resistant prostate cancer, HRQOL was maintained after initiation of apalutamide treatment. Considered with findings from SPARTAN, patients who received apalutamide had longer metastasis-free survival and longer time to symptomatic progression than did those who received placebo, while preserving HRQOL."

ncbi.nlm.nih.gov/pubmed/302...

[Darryl Partner in reply to tango65]

Thanks for your report. Do you have any personal experience with apalutimide?

[Hidden in reply to Darryl]

M husband has no side effects, he saw more changes from Lupron.

[pjoshea13]

Darryl,

New papers:

thelancet.com/journals/lano...

thelancet.com/journals/lano...

-Patrick

[tango65]

No .

[monte1111]

Sorry. No experience. But i am a presbyterian.

[tallguy2 in reply to monte1111]

“It was meant to be...”

[mcp1941]

I have been on Erleada for about five months now with a 19 day gap to have two surgical

procedures performed not related to PCa. Had to stop Erleada due to high blood pressure. PSA 4.0 when I first started then 0.6 when I stopped. After restarting Erleada first PSA test was 0.7. I have my next blood work scheduled in two weeks. Hoping for undetectable. High BP was my only new side effect. Now I have somewhat bettet control of BP.

[GeorgeGlass in reply to mcp1941]

what was your BP before you started Erleada?

[mcp1941 in reply to GeorgeGlass]

Prior to Erleada systolic pressure was in the 110-120 range and diastolic in the 74 to 80 range. Heart rate was 55. After starting Erleada heart rate went to 110. BP on Erleada was about 130/95. Systolic sometimes went over 100. And that was with 3 different blood pressure meds.

UPDATE: Erleada has failed and MO has taken me off it and BP and HR are both back to normal. I was just DX with Multiple Myeloma and MO is waiting to see what treatment new MO#2 is going to use for MM before starting new treating for PCa.

[GeorgeGlass in reply to mcp1941]

that must have felt odd to have bp double. I hope your current treatment is working well.

[donnacgorman]

My husband started Erleada a few months ago and his PSA was reduced by more than 50% in a matter of weeks. At the same time we noticed the development of a non-productive cough. As the weeks passed the SE of Erleada became more apparent; fatigue, stiffness and cognitive issues. He felt the SE were less than those of Xtandi however. Fast forward, My husband recently had a heart attack. A stent was implanted to open a 70% occlusion which he has had for quite some time. He has been taken off Erleada by his oncologist who suggests that Erleada might have contributed to the attack. We will get an echocardiogram before going forward, possibly introducing Erleada again but at a reduced dosage for a period of time.

[GeorgeGlass in reply to donnacgorman]

How bad do you think his heart was before starting erleada? Has he done a stress test prior to starting erleada? The side effects of the Titan trial didn't say anything about heart issues.

I wish you and your husband the best health in the future.

George

[rogerwegner]

I just started Erleada this morning. I have no idea how long it will take for the side effects to show up,but I will report back on how it is going. Roger

[tkalaf]

Hi Darryl, I am in a clinical trial of ~22 participants. Earlier this year, I ingested Apalutamide daily for 84 days. It was part of a regiment of clinically prescribed ADT before undergoing surgery (RP). Side-effects experienced were (I believe) from daily Abiraterone-acetate (Zytega) and monthly administered Degarelix (Firmagon). See my postings for details. My next PSA draw will be in early Dec.

[rogerwegner]

I have been on apalutamide for two months now. The most notable side effects have been,hot flashes,memory issues and a constant cold in the nose. I will check next week and see what my PSA is running. The other issue is my INR level for anti-coagulation has been hard to get to effective range. My warfarin dosage has been tripled and I am getting closer to the right range.

[rogerwegner]

I have been on erleada for 2 months now and today I had vertigo so bad that I fell in the bathroom and hit my head on the tub. After a CT scan they found no bleeding in the brain, so I dodged that bullet. My PSA has dropped in 2 months from 4.27 to .4. My Doctor was pleased with that

[Abbynava]

Hubby started Erleada 12/26. Started with cough a few days later. Thought just a cold from being around many people over the holidays. 10 days later coughing up green with red phlegm. Wondering now if it’s from Erleada. Everything I’ve read says Erleada is for non-metastatic PC. On several PET scans, he has lung nodules which are being called Mets from prostate. Nodules did decrease after Lupron, but too many side effects to take again. If anyone can answer this —— should he be taking Erleada if he indeed has prostate Mets to lung? And could cough be from the Erleada?

Thanks

[westjl2]

I was in the Titan study as well. Erleada has just been approved February 1, 2019 for usage for treating MPC as well as non- MPC.

I found out I was on the placebo but am not eligible to switch to the real drug because I started taking Zytiga two weeks before they opened the Titan study and offered it to everyone on the trial.

I will be very interested as well to see what the longer term SE’s are with Erleada. One proven one is increased falls and fractures. I don’t need that as I have already fallen and fractured a rib due to weakened bones.

[westjl2]

I will also be very interested to see what the differences are between Erleada and Xtandi. They seem to be very similar. I wonder if a person with HRMPC will get a benefit from each one taken separately or are so similar that it is only effective for one and not the other.

[dpowellnt]

Hello. I've read the comments and thought I could add some of my own experiences. I have had a very rough time up to the point I started Erleada. I was at 55 psa, had radiation, which caused internal bleeding in my colon. My oncologist at one point said I had 400% worse symptoms then anyone he had ever seen, and he had 4000 prostate clients. I was and am still on Zolex. It's been three years, They added casodex but that was so bad I was literally suicidal (just flat out feeling terrible ALL the time). Eventually they put me on Erleada when my psa started to drift upwards again (it had been as low as .447 but had moved up to 3.6 in one month).

I did not have ANY symptoms at first and felt wonderful after all I had gone through for 2 years. But symptoms do start to creep in. I've been on it now for 6 months. My psa is down to .131!!!!! Great! However the symptoms kinda come in waves. I will have a great day, then several tired days, then an all out gassed day. I no longer have virtually ANY body hair after being rather furry before. Bowel movements do not seem to be overly affected. I get strong hot flashes, but I had those before Erleada also. But the blood pressure thing really has hurt me. In December I had a bad incident that sent me to the hospital for 6 days. They could not find the cause of my chest pains and BP of as high as 220! They did every test in the book.Finally we had to chalk it up to Erleada. So seeing others have had a similar reaction is in a way confirming. Hope my experience helps others.

[Hidden]

I've been taking Erleada since March 2018 (14-1/2 Months). Here's my experience so far:

1. It's expensive! I have decent insurance, but @ $12,000 a month! Seriously! No wonder health insurance is so expensive.

2. It works for me. I had Gleason 9 PC, a radical prostectomy followed by radiation plus ADT...This while the PSA continued to rise; and it was found in a scan that the cancer spread to my pubic bone. Erleada + ADT stopped the progression and put the cancer into remission within 3 months time.

3. Unfortunately, Erleada + ADT was not presented to me as a cure. I continue to take it to keep the cancer in remission. After 14-1/2 months taking it, there is no end in sight.

4. I have experienced many side effects. Some ebb and flow, others persist.

4a. Of the ones that ebb and flow, they are nausea, skin and scalp rash, thinning body hair (but the existing bald spot on my head is now growing some hair...go figure), total exhaustion (usually after a full day in the sun), appetite suppression and insomnia.

4b. Of the ones that persist, they are HOT FLASHES, fatigue, high blood pressure (now kept at bay with medicine), near syncope and lack of sexual interest

5. None of these side effects appeared at the same time...rather, Erleada is the gift that keeps on giving. There's a new side effect to experience every couple of months it seems; but it works, and so far, I can deal with the side effects.

6. Dealing with the side effects:

- I have to peel my butt off the couch and go for a walk...1 hour walking each day makes a huge difference.

- Drink a lot of water, I'm convinced that being completely hydrated helps curb the side effects.

- I keep notes on the various side effects and inform my doctor each monthly appointment...together we have come up with some interesting ways to minimize some of the side effects.

- Stay positive. I've been battling this for some time now, I know others who have been dealing with advanced PC for years. People who see me every day lose sight of this and although I don't want to be viewed as a victim, sometimes it's nearly impossible to hide the current side effect that I'm experiencing; but (to pick one) total exhaustion is impossible to hide...all I can do is admit to it and take a down day.

Hope this helps.

[longrungo2]

Hello Darryl!

I am posting essentially same text I replied to Nalakrats about ERLEADA.

Forgot to mention, however, that I've been vegan for 18 months and taking Beta Glucan every morning on empty stomach.

After DRE in June 2017, then MRI and resulting biopsy determined Gleason scores of 4+5=9, though PSA was only 4.4 or so, I opted for a robot-assisted RP at JH in Dec 2017. Histology determined invasion of one seminal vesicle, negative for lymph nodes and negative surgical margins, I was staged T3b. Surgery resulted in ED and severe incontinence, the latter improving over time to partial sphincter control, enough to forestall voiding but not enough to control slow, cumulative drip. Have to wear 2 Depends per day. Will avoid complaining. Also developed 7 cm lymphocele (seroma of lymphatic fluid) from the surgery, which according to a recent CT scan, seems to have reabsorbed.

PSA after RP was <1. In the ensuing 12 months PSA rose from 0.02 to 0.04. to 0.05 to 0.08 to 0.12, at which time I consulted JH-affiliated MO and top RO. Though PSA still relatively low 1.2, RO ordered Axumin PET scan, which was negative for mets, and suggested I do 39 radiation treatments aimed at the prostate bed, while MO was not convinced. Very wary of radiation, I opted for MO's treatment. (Will it be my undoing?) Started 30 mg ELIGARD injection (four months, time release - same as Lupron Depot) and accompanying daily 50 mg of BICALUTAMIDE, followed by another four month ELIGARD injection. However, MO switched me from 50 mg BICALUTEMIDE to 240 mg daily ERLEADA one month ago. Have not renewed yet and not sure what copay will/would be.

PSA has remained stable at 0.02. For now.

My own experience with ERLEADA side effects is not positive. I have double the hot flashes I had with the ELIGARD-BICALUTEMIDE combo, experiencing increased cognitive impairment, am less sure on my feet, and, as someone with GERD and a hiatal hernia (Reflux disease) for many years (well treated by 20 mg OMEPRAZOLE, since years OTC), I find that within minutes of taking ERLEADA it immediately pushes up the production of stomach acid, while at the same time cutting the action of OMEPRAZOLE by as much as 85% (according to several sources.)

So, even after doubling OMEPRAZOLE to 40 mg per day, with smaller and earlier-in-the-day meals, I experience daily burning in throat and chest, sometimes mouth. As some years ago I had Barretts Esophagus (invasion of lower esophagus by pre-cancerous cells) but it retreated, the specter of possible future esophageal cancer now reappears. I have shortness of breath from the newly increased GERD symptoms and my quality of life has deteriorated. I decreased the daily dose of ERLEADA to 120mg but reflux symptoms persist. Will have to revisit ERLEADA with MO when I see him next week. He's a fan of ERLEADA because of the SPARTAN trial, etc.

No idea what my monthly co-pay will/would be, as first month was comped by Johnson & Johnson.

[Sxrxrnr1 in reply to longrungo2]

Was or is there a reason not to try Xtandi or Darolutimide if you can find a trial? Yes, similar drugs but could side effects differ to your advantage? Only serious SE for me when on Xtandi was fatigue.

I have yet to see any evidence or study that indicates clinical superiority of any of these 3 drugs over each other. Understand trial comparisons are in progress. Findings, who knows when?

[GeorgeGlass in reply to Sxrxrnr1]

what are the other xtandi side effects in most men?

[GeorgeGlass in reply to longrungo2]

I recommend that you stop the Omeprozele and start taking 3-4 different types of quality brand probiotics and a prebiotic everyday. My acid GERD and gastritis was bad, the PPIs made it worse. I told the GI doctor that she didnt know what she was doing. The PPIs are bad for the heart as well. After taking the probiotics, me stomach pain went away within two weeks and I also used aloe vera tablets, slippery elm and marshmallow root but nowadays it mostly just the daily pre and probiotics and now stomach or abdomen problems. The gut bacteria is related to your immune system. Build it with probiotics instead of tearing it down with PPIs.

[GeorgeGlass]

I was excited reading the titan trial results but after reading the comments on here, I'm no longer excited about Erleada.

[Tall_Allen]

Not yet.

[Boywonder56]

They did sept 19th google it