Side Affects: I recently changed my... - Advanced Prostate...

Advanced Prostate Cancer

20,967 members26,131 posts

Side Affects

DaC00tie profile image
21 Replies

I recently changed my treating oncologist after 6 months. I'm currently on Lupron injections every 3 months, 1000mg Zytiga once a day, and 10mg Prednisone (5mg twice a day). One of the first things my new oncologist did was reduce my Prednisone from 10mg to 5mg (once a day). And ever since I reduced my Prednisone, I no longer experience hot flashes which I used to experience many times a day. Has anybody else had the same experience?

Another change my new oncologist made to my treatment was, she said after being on Lupron for two years, we were going to take a vacation from taking it for approximately a year. Then begin the Lupron injections again. She also said, "but, if your PSA begins to rise before the one year is up, we will begin the Lupron again". Again, has anybody else had a similar experience?

Written by
DaC00tie profile image
DaC00tie
To view profiles and participate in discussions please or .
Read more about...
21 Replies
JimVanHorn profile image
JimVanHorn

I was on Lupron for 6 1/2 years and the side effects were not very strong after 18 months. Many oncologists use Lupron off and on like that. My oncologist is from old school I guess and kept me on it straight through. He offered me Zytiga and Prednisone but my PSA was 0.000. He stopped it in June 2018 and my PSA is still 0.000 so I am on what they call active surveillance and see my oncologist every 6 months. I also had a total of 72 radiations, 42 in 2007 and 30 in 2011, when they found metastases in my bones. So you could get a second opinion (I did) and make a decision for yourself. Stay away from table salt and don't eat salty foods while on prednisone. (5mg isn't too bad). But above all else just keep truckin'.

DaC00tie profile image
DaC00tie in reply to JimVanHorn

My current treating oncologist is my second opinion. I originally went to see her because I wasn't satisfied with the information I was getting from my first treating oncologist. After talking to her, I like her demeanor and approach, so I asked her if she would be interested in becoming my treating oncologist. She confirmed my current treatment that I was on was the way to go. The only changes she made were what I mentioned above. I start 35 radiation treatments in 4 days. Her response to that was "it's reasonable". I'm not exactly sure what that means.

monte1111 profile image
monte1111 in reply to JimVanHorn

I'm a salt addict and taking 10mg prednisone with xtandi. Guess I need to research that. Been taking the pred. for 15 months now. Maybe it is time to wean myself off of it. Must see what MO has to say . Learn something new here every day. Thank you.

JimVanHorn profile image
JimVanHorn in reply to monte1111

I was a CVS pharmacist for many years and I can pick out who is taking prednisone and over eating salt by just looking at them when they walk in the door. They have two characteristics. One is "Moon Face". Prednisone causes sodium retention in the face. The cheeks become larger and the face becomes like a full moon. This may not go away when you stop prednisone. Also, the second sign is that you get a hump on your back and you walk bent over. This is also not completely reversible when you stop prednisone. Have you ever seen a little old lady with moon face and a hump on her back? If something tastes salty, DO NOT EAT IT. This includes vegetables, chips, snacks, and anything if you can see the salt on the outside. All processed meats have salt like bacon and sausage. Cheese has a lot of salt. Look on the internet for a low salt diet. Do not add salt at the table, learn to use other flavors like spices and pepper. Stay away from artificial salt substitutes like potassium. They ruin the taste of the food. Minor changes now will make your future much better and remember to just keep truckin'.

Fairwind profile image
Fairwind

Everyone is different..Much depends on your original Gleason score and how aggressive your cancer is. Some do well on milder treatment while others require more aggressive treatment. There is no set answer...

DaC00tie profile image
DaC00tie in reply to Fairwind

Gleason score 7 (3+4)

JimVanHorn profile image
JimVanHorn in reply to DaC00tie

My Gleason score was the same as yours. I hope radiation helps you. They put flecks of metal (gold or silver) in you when they start radiation. These flecks tell the machine exactly where your prostate is. Your prostate is not connected to any bones and if poop comes down your intestine it can move the prostate the radiation is beaming, so the flecks are in a three dimensional plane and the machine moves with the prostate or the beam shuts off. You may get one or two dot tattoos on your sternum. This is to locate your center line. Drink a lot of water just before the x-ray. because a full bladder helps "hold" your prostate in place and the three radiation beams take about 7 minutes. Each radiation treatment has three beams. If you have 30 radiations your will have 90 beams, each one from a different angle. Every beam goes completely through your body and it is only where the beams intersect that they cause the death of tissue. I had no side effects from radiation. So I wish you well and just keep truckin'.

DaC00tie profile image
DaC00tie in reply to JimVanHorn

These metal flecks you mention, are they surgically inserted?

JimVanHorn profile image
JimVanHorn in reply to DaC00tie

They are put up inside the rectum into the prostate area and you are not put to sleep. The doctor does this.

in reply to JimVanHorn

My research Radiation Oncologist accomplished this with a rectal catheter and attached water balloon. This keep the prostate in the same position. End result, very little scarring in the colon.

GD

Kezza2 profile image
Kezza2

I was on a trial for Zytiga (abiraterone) for two years before it failed, now I am undergoing chemo with Taxotare (docetaxel). I have multiple lymph and bone metastases. Two things to talk to your oncologist about - ask her about replacing prednisone with dexamethasone, and as you have been on Lupron for a while, ask her about a bisphosphonate (eg Zometa) infusion for your bones.

DaC00tie profile image
DaC00tie in reply to Kezza2

Thank you. I will add that to my list of questions to ask. It seems some kind of question comes up throughout the day and unless I write them down I forget.

I was on Eligard for over 18 months and took a 6 month break. It would have been longer, but my PSA doubled on three consecutive tests. The break gives you your mind and body back for as long as your numbers behave. You will enjoy the holiday. It is called intermittent ADT and has gained popularity with patients for obvious reasons.

Jimhoy profile image
Jimhoy in reply to

Been searching for a long while now as to how fast / slow the effects of Eligard subside!! Can you help me? Knocked me out of work 9 months ago and then some!!! I and am starting my break.......well.......now!!!!!

Any info will be apprecated!!!

Jc

in reply to Jimhoy

It took at least three months for me to begin getting my energy back where I could really notice. Then I would gain energy and some interest in sex again week after week. By four months my PSA started to increase and I felt better and better. By six months I felt amazing and had to go go back on Lupron.

Jimhoy profile image
Jimhoy in reply to

Thank you and I hope I didn’l throw salt in a wound. What you offered is kind of what I sumerized by my questioning sites like this!! I’m likely going to face the same decision to resume ADT but will put it off as long as its safe!

Thank you

Jc

spikezoey profile image
spikezoey

I can't speak to the lupron break, but as for dropping prednisone to 5mg/day, that is what my hubby (who started the PCa journey in June) is on with zytiga+degaralix (he hated the "lupron brain fog" and switched back to D, which has been much better for him). I.e., I think that standard of care now is 5mg, so they are probably dropping you now to that for that reason.

I took a three month vacation and wound up with "spots" on hip and vertebrae #12 that will probably go away now that I'm back on ADT. It's a crapshoot. Good luck!

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

Heads or Tails, decisions, decisions, decisions...

Good Luck. Good Health and Good Humor.

j-o-h-n Monday 12/03/2018 9:17 PM EST

For six months I took 30 mg of Prednisone daily. My perception, no effect on hot flashes. Hot flashes eventually dissipated as my body became accustom to the influx of hormonal injections. However, I did gain weight.....

GD

Captsquid2u profile image
Captsquid2u

I’ve been on the exact same drugs, hot flashes constantly, just had new bloodwork yesterday, waiting for results, I would like to stop the prednisone too, will inquire with my oncologist. I’m getting a prednisone belly and I am basically vegan, lost 30 lbs in 6 months on the vegan diet? Now the prednisone after 6 months has put 10 lbs back on me. Not sure what the prednisone is supposed to do. Good luck and thanks I would like to stop taking it myself

You may also like...

Other taxotere side affects?

Radiation side affect - Urinary

through radiation treatment, 35 treatments, every day for 7 weeks (M-F) to my pelvic region....

Prednisone side effects

salt. About day 4, I noticed my face swelled again and I started biting my inner cheeks again due...

Side Effects at 1 year

Abiraterone/ 10mg Prednisone + 6 cycles Docetaxel + Xgeva 28 days/ adjusted to 90 days I adopte...

Abiraterone side effect

listed side effects of abiraterone my oncologist says that she has never heard of it happening...