Zytiga side effects, is it worth it?

[OldGuysRule]

I started Lupron about 3 months ago. I was doing alright on just Lupron but then my MO started me on Zytiga about six weeks ago. Since then I have started having severe leg pain, mostly at night. I have started feeling very anxious and on edge, not sleeping well at all and when I do sleep I have crazy dreams. I have headaches and confusion that have started affecting my work performance. He has me taking a low dose Paxil and lorazepam when needed. They really don’t help that much and I’d rather not take them. He explains that the Zytiga will help extend the effectiveness of the Lupron. Any thoughts or direction out there. This sucks!

[Seasid]

I take Degarelix injections only for more than 4 years now and I don't have any visible mets on the PSMA PET scan.

Ok, I had early docytaxel chemotherapy 6 cycles.

I was diagnosed with 15 bone mets in my spine.

My RO and MO agreed 4 years ago that I will contact RO when my PSA starts to rise.

At PSA 1.25 I had a PSMA PET scan and decided to irradiate my prostate as the SUV max value of the prostate gland was 14 and 95% of my prostate was full of cancer.

I just finished SBRT with MRI Linac of my prostate only.

[Tall_Allen]

Maybe you're not taking enough prednisone with it. How's your BP and potassium?

[d3is4me in reply to Tall_Allen]

TA

Agree I was on 5mg prednisone morning and changed to 5mg morning +2.5mg lunch BP back to normal no more headaches

[Tall_Allen in reply to d3is4me]

I think the replacement amount of prednisone can be very individual.

[OldGuysRule in reply to Tall_Allen]

I take 5 mg of prednisone. My blood is always good and never a problem. My potassium level is 3.9.

[Seasid]

Would you do early Docetaxel chemotherapy 6 cycles instead of Zytiga?

I had it and I can recommend to everyone to try. If you don't like it you can always stop it.

Chemotherapy is especially good and helpful if you have bone mets. I believe that I am doing well because I had that early Docetaxel chemotherapy. I started chemotherapy 2 months after starting ADT.

I believe that the side effects of the early chemotherapy are more tolerable than an ongoing Abiraterone plus Prednisone therapy.

Here is a link to dr. Fred Saad:

"Chemotherapy in Prostate Cancer- When, Why and How"

urotoday.com/journal/everyd...

[maley2711 in reply to Seasid]

Thanks for the great article !!!

[Seasid in reply to maley2711]

My initial MO professor Richard Epstein said that Dr Fred Saad is good.

[dhccpa in reply to Seasid]

Were you taking any ADT while doing chemo?

[Seasid in reply to dhccpa]

Of course.

I started with the double Firmagon injection (2x120mg Degarelix) followed by 80mg every 4 weeks since then.

After 8 weeks I started Docetaxel chemotherapy 75 mg/m2 every 3 Weeks for 6 cycles.

[Seasid in reply to dhccpa]

I didn't use Prednisone during chemotherapy, only dexamethason before the at the infusions as per Dr Fred Saad from the link about the chemotherapy:"Chemotherapy in Prostate Cancer- When, Why and How"

The use of Prednisone during early chemotherapy is optional. I preferred not to use it, only dexamethason as described it the above article.

A finish study also didn't use Prednisone.

The chemo section of my hospital wanted me to use also dayly Prednisone but I didn't want to use it.

I really don't know would it make any difference for me?

My blood work was always good but I developed grade I peripheral neuropathy at the end.

Now I feel almost normal.

Dr Fred Saad recommends stopping early chemotherapy at earliest signs of peripheral neuropathy. (As you can read it yourself.)

[Huzzah1]

I am in my 7th month Eligard/Zytiga+P. When I first started, I was having a hard time sleeping, hot flashes, brain fog and fatigue. I continued my exercise routine, fast walking and lifting at the gym. I no longer have brain fog, sleep very well (use melatonin) and my fatigue level is minimal. I also take low dose Paxil and it took a few weeks for that to kick in. Stay the course and with exercise in the mix, you should start feeling better.

[OldGuysRule in reply to Huzzah1]

Thanks! I am 62, active, slim and in fairly good shape. I swim when I can and was working out in the gym until I developed a rectal fistula that gets aggravated when I strain by lifting. My urologists says it isn’t related to the prostate cancer. I am to see a surgeon soon (I hope) to deal with that, and then I can get back in the gym. I have great support with my wife and large family. My faith in Christ is the most important thing to me. I’ve been dealing with prostate cancer now for eight years with many painful complications. As many you, I’ve been through a lot and I realize there many out there much worse off than me so, I am thankful. I’m no softy and I usually don’t whine but, man this Zytiga is kicking my butt!

[London441 in reply to OldGuysRule]

High BP is a very common side effect of abiraterone. Get your prednisone dosage in order if necessary as TA suggested, along with potassium. ‘Swim when I can’ isn’t good enough on these drugs. Swim more and get back to lifting as soon as possible or you will regret it. ADT induced sarcopenia works swiftly without substantial intervention, and you do not want that.

According to your profile you have been ‘choosing QOL’ for several years. Whether it’s been successful or not, now you have to earn it more than ever. Great luck to you!

[mrscruffy]

Been doing this dance for 6 1/2 years now. Found great relief from mental issues with Cymbalta and working out 5 days a week. The daily workouts really help with the side effects both mental and physical

[MJCA]

There are other drugs in that class: apalutamide (Erleada), darolutamide (Nubeqa) and enzalututamide (Xtandi). You should not have to put up with severe side effects when there are other alternatives.

[Muffin2019]

I had just some fatigue, I would talk to the doctor, I took mine in tge morning, 1000 mg.

[PCASURVIVOR]

I was part of a clinical trial using Abiraterone/prednisone(5+5) with Lupron and Niraparib with SBRT at the conclusion of cycle 3. Elevated BP was treated with clonidine am/pm. PM leg pain and involuntary jerks were a problem and most night I got 3-4 hours of sleep. I got in the habit of stretching for 30-40 minutes before bed. In addition, when I woke up every 1-2 hours, I did leg stretches for 10-15 minutes. Not the best solution but somewhat tolerable. My trial ended on 9/1/22 and body has returned to normal excepting some aperiodic hot flashes. I also am a Christ follower and believe strongly in the sustaining nature of faith in Him. So far, PSA has been <0.01.

[Shamrock46]

Same with my husband on Xtandi....restless leg syndrome, anxiety, fluid retention around his heart that led to 2 nights in hospital on IV diuretics, loss of muscle mass, no sleep at night but constant nodding off during the day....so many side effects that his dose was cut in 1/2 to 2/day followed by still worsening SE that included no strength to lift his arms and trouble with legs that now has him 1/day with PSA starting to rise. I often wonder if it's worth it.

[OldGuysRule in reply to Shamrock46]

Right! I’m wondering also. I’m not going to throw in the towel just yet but, it really sucks. I’m going to throughly investigate the pros and cons of having the boys removed. I’ll share my thoughts on that as I study.

Thanks and all the best

[Seasid in reply to OldGuysRule]

Would you consider Chemotherapy?

[OldGuysRule in reply to Seasid]

Sure but my MO wants to hold that in his quiver for now. I’ll ask him more about it.

[Seasid in reply to OldGuysRule]

Ask him why not.

Even if you only have 4 to 5 cycles it would be a benefit. You can always stop it. You don't have to have all the 6 cycles of Docetaxel chemotherapy treatment.

You can't stop Enzalutamide or Abiraterone plus Prednisone.

[gsun in reply to OldGuysRule]

Even if you do that the adrenal glands need T suppression. Zytiga does that.

[Shamrock46 in reply to OldGuysRule]

My husband also has cardiac issues and has refused chemo, radiation, bisphosphonate therapy and castration surgery. All he has right now is Lupron and 1 Xtandi/day which we will review in Jan. with MO after he has his bloodwork to see where the rising PSA is after 3 mos. on only 1/day. She wants another scan but my husband has great difficulty since it's painful for him to lie still with his arms raised over his head for that length of time. He refused surgery after hearing that PSA can still rise afterwards and it's a lengthy recovery. He's had a history of many complications since the prostatectomy including 11 days in the hospital with acute kidney failure due to Toradol given post op, a seroma after the surgery, a procedure to remove a hemolock from the original surgery that dislodged and attached to his bladder...etc. During all that he developed a tic disorder that caused spasms in his esophogus that too 7 drs. to finally diagnose...so I understand why he's had enough and thinks that as soon as he has one thing fixed, something worse develops, especially with all the SE from meds. Hope your luck is better.

[OldGuysRule in reply to Shamrock46]

Bless your heart! It’s a rough road we are on. I wish you all the best!

[Shamrock46 in reply to OldGuysRule]

thank you

[Carlosbach]

To a young OldGuy,

For me, the first two rounds of Lupron (4 month doses) kicked my butt. The Zytiga, not so much.In fact, I was so miserable I started investigating physical castration.

I am not sure what worked or if it was just improved tolerance, but I upped my walking, changed my diet, meditated more, and my SE's improved following the 3rd shot (8 months in). Don't know if this is an option for you, but I also take a small dosage gummie a half hour for bed to alleviate the leg and hip pain while I sleep. I'm now sleeping more than I ever have as a adult, at least 9 hours a night.

I was loosing so much muscle mass, and at the urging of many folks on this site, I added in resistance training. I used to enjoy heavy weights, so what I lift now wouldn't qualify as a warm up. However, when I do light resistance training 2-3 times a week, my SE's decrease even more dramatically.

Best of luck with whatever choice you make

[OldGuysRule in reply to Carlosbach]

Thanks for your input and encouragement