Side effects of withdraw from prednis... - Advanced Prostate...

Advanced Prostate Cancer

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Side effects of withdraw from prednisone and can a oncologist give Lupron/xgeva shots?

Olivia007
Olivia007

Anyone have withdrawal side effect from prednisone? My dad was on it along with zytiga for over a year but his urologist told him to stop taking both pills because the zytiga is not keeping his PSA low. So my dad stopped taking them then 1 week into it he had a few symptoms so I dr googled it and was reading one must taper off the prednisone. I called his office spoke to receptionist she said let me ask and then said the doctor informed you to taper off by taking 3 while pills then cut I half then I quarter I state he is lying he NEVER gave me or my dad that information he just said stop taking the pills wow what a Liar but anyway has anyone gone cold turkey off of prednisone or tapered off.

Also I can’t tolerate his urologist for the life of me I do not know why we were never referred to oncologist as soon as they knew my dad had cancer with bone Mets I have set up appointment with an oncologist in October does anyone know can an oncologist continue to give my dad his lupron and xgeva shots? The urologist said we would have to continue seeing him along with whatever we decide with the oncologist is that true?

Thank you

Olivia

20 Replies
oldestnewest

Bad luck...you got an incompetent urologist who failed to tell that prednisone must always be tapered slowly. Worse that they made mistake and then lie about it.

Never stop predisone suddenly. .it will cause high anxiety, mood swings and even paranoid thinking...Always taper prednisone very slowly esp last 10 mg

Olivia007
Olivia007 in reply to LearnAll

I know he’s trying to blame it on me when I listen to every single word he says now he claims I didn’t understand him? I wish I can record our visits this is not the first time he gave us wrong info and denied it.

Any MD can prescribe Lupron or xgeva. From your description that Uro, he does not inspire confidence. I would find a new doctor.

Olivia007
Olivia007 in reply to Magnus1964

U r right he doesn’t inspire anything half the time I feel I know what’s out there before he does yes because I read and research online and with books

There is no need to continue seeing a urologist unless you have urological symptoms of problems..The lead doctor should be a medical oncologist..What is Dad's PSA now..?

Olivia007
Olivia007 in reply to Fairwind

It’s a 1.91 it started to rise since March 2019 so now we r referred to oncologist

Yes, he should certainly be seeing a medical oncologist. They are trained in the use of medicines for cancer, so he is usually the one who gives Lupron and Xgeva shots. The urologist is only useful for urological problems at this point.

Side effects of not tapering off prednisone include edema, high blood pressure, and low potassium.

Olivia007
Olivia007 in reply to Tall_Allen

Wow thank u I’m so upset I want to yank my dad out of that office but we have August and September then the oncologist appointment in October.

I hope and pray this oncologist is competent and we will continue to see him I wonder why the urologist said “you will still continue to come and see me for his shots of Lupron and xgeva “ we can’t start with the oncologist if we like him?

You must taper off

Wow, I’m sorry you had to deal with this. Yes you have to taper off prednisone. I have 3 oncologists. My Urology oncologist, Medical Oncologist, and Radiation Oncologist. All of them specialist in Prostate Cancer.

Olivia007
Olivia007 in reply to Zytigadude

Why do u see 3 specialists I understand the urologist oncologist but why the other two.

Also what are you on now?

Zytigadude
Zytigadude in reply to Olivia007

My Urologist who performed my surgery is also an oncologist. My radiation oncologist specializes in prostate cancer radiation only. My medical oncologist specializes in prostate cancer medicines only.

I have not seen the Urologist who diagnosed me in 2003 with PCA. I moved to the treating Radiation Oncologist. First, RO implanted seeds and then sent me to a RO who did IMRT. This was my planned primary treatment. I continued to see both for ten months and once Mets appeared, both recommended that I see a specific type of Medical Oncologist. One knew one, one did not. I was then referred to a Research Medical Oncologist. Both RO’s have followed up with me at five years and ten years.

I recently I had need of an Urologist for stones. So I have now I have an Urologist who only treats problems dealing with normal urological problems. All cancer related treatment is by my Medical Oncologist; which these days are simply follow up on a quarterly basis. I had the option of six month or annual follow up, but chose what I was more comfortable; quarterly testing and follow up.

As my initial ROs , both of them, once said, any doctor can give injections of Lupron if you want. However, they personally would go the route which I took...... in answer to the question, “Doc, if you were me, given my scope of disease, what would you do?”

Essentially I fired the surgeon, and moved on to the people who were best trained to deal with my disease....... Final point, throughout the past 15 years of initial metastatic disease, although they have no personal relationship, my Medical Oncologist communicates with my Cardiologist for the management of my healthcare.

In my opinion, whichever specialist you have confidence based on their knowledge and skill, is who you should be seeing for treatment.

Gourd Dancer

Thank you

As for the urologist lying I would report him to his superiors and dump him. Good your getting to see a MO but can't you speed that visit up to August, September? If you wish to see a different one sooner why not post your location and ask our members if they can recommend a good MO in your location. Ask that question in a future post NOT today.

Tell the urologist you have a friend (me) who would love to give him a DRE with his size 12 foot (shoe on of course - with a shoe glove). Regards to Dad and to you (and whoever).

p.s. Olivia is one of my favorite female names..... J-o-h-n is my favorite male name.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/27/2019 12:58 PM DST

monte1111
monte1111 in reply to j-o-h-n

October does seem to be a long time away. Guessing one of your other favorite female names is Olive Oyl. Are your size 12 feet yellow? Are you 3 feet tall and wear a top hat? A clearer picture emerges.

j-o-h-n
j-o-h-n in reply to monte1111

Only if she 100% extra pure virgin and cold pressed.

Of course they are. Your memory is failing you again, you keep forgetting I'm your identical twin brother.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/28/2019 1:30 AM DST

Olivia007
Olivia007 in reply to j-o-h-n

Thank you

Hi "O", I agree with Monte. October?? When I decided to get a 2nd opinion at MSK, I met with the RO within a week. A week later I was scanned. How much predisone is your Dad taking? March 1st, I started Zytiga and one 5mg tab of presnisone. I meet with my MO next week and I'll ask him. He is REALLY good, Dr Richard Frank, Norwalk CT( look him up).

I understand that many of us like our current doctor for treating our prostate cancer. But I had a very close relative that was in the medical field (doctor) who advised me when I was very young, to always find the Doctor(s) that specialize in your condition. I liked my Urologist very much, but he was limited in treatment specialities and access to the latest state of the art medications. I chose to find an Ongologist with a Research Center to support him. They also have many doctors that specialize in other treatment areas, radiation, etc.. I live in Florida and use Florida Cancer Specialists and Research Center for my cancer issues.

I still see my Urologist on a regular basis, but for urology issues associated with bladder and kidney issues.

Yes, Ongologists can and do injections of Lupron and xgeva.

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