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Anyone else here on Apalutamide and Lupron?

Anyone else here on Apalutamide and Lupron?

Posted by GlennK on Sep 17, 2020 6:26 pm

Just got my last PSA (21) test and I'm into my second month of Apalutamide and Lupron and I'm looking for others to share stories with.



My History
DX in May 2011, Age 52, Stage T2c, GG 8-10, PSA=10.6
EBR + Brachy Seed Implants + HT(22.5 mg Lupron for 1 year)
Nov 2011,PSA 0,Feb 2012, PSA 0 (T=1.66), Nov 2012, 0.29 T=4.0
May 2013 0.32 T=5.11, Nov 2013 - 0.20 T = normal
May 2014 0.22, Nov 2014 - 0.60,
May 2015, PSA=0.7 NEW- Nov 2015, PSA-0.18
May 2016, PSA=0.76, 5 years later 0.39 Nov 2016
Sept 2018,1.65, April 2019, 1.70 T=7.75

Re: Anyone else here on Apalutamide and Lupron?

Posted by Lianne_Moderato on Sep 18, 2020 3:51 pm

Hello and welcome GlennK‍ 

How are you managing on the meds so far? I did a search for Apalutamide and found that Cooker47‍  mentions being on it as well.

Perhaps he can share his experience with you.

Lianne

Re: Anyone else here on Apalutamide and Lupron?

Posted by Cooker47 on Sep 19, 2020 1:20 pm

GlennK‍ 
I have been on Apalutamide and Lupron for two weeks and one week (last Wed) respectively.
I had some diarrhoea (still have) from the Apalutamide but nothing earth shattering.
As soon as I got the first Lupron (Eligard) injection my urine production per shot jumped nearly 100%.
Importantly from a day-today perspective, I had been experiencing burning sensations just short of painful most often when I pee;
I mentioned it to the Medical Oncology resident who said "It's not supposed to hurt" so I mentioned it to the Urologist's nurse who told me to tell him when I next saw him, which I did;
He ordered a bacterial culture test on my urine which came back negative, so I asked my own Doctor about it.
He suggested it could be a result of having had three catheters since June: a certain amount of rough handling is inevitable.
He put me on a course of antibiotics and within 24 hours the burning has mostly subsided: a blessed relief.
I'm still learning about diapers but I do what I must.
I don't understand your shorthand very well, and in my case I have not paid attention to my own PSA numbers so I shall ask about them when I next see someone.
I know it was high.
I was diagnosed with Stage 4 prostate cancer and Stage 4 bone cancer in hospital in early June. I had been admitted for something else (flash pulmonary edema) and was being treated for a kidney problem (very high creatinine count) when they did a lower body CT scan and found the cancer.
As regards outcome I am more concerned about the bone cancer, but it is what it is and I don't spend time worrying about it.
I still have trouble drinking two large glasses of milk each day.   

Re: Anyone else here on Apalutamide and Lupron?

Posted by Boby1511 on Sep 19, 2020 2:50 pm

Cooker47‍ 

I was on Lupron injections monthly Feb, March, April, then they switched to the 3 month injections in May, 2020.
The drug is also used for Endometriosis, which I didn't actually have. It was cancer, but they didn't know the extent until my surgery in May.
Lupron was still in my system till end of July.
I had a catheter and then later on the multiple drugs with surgery, so hard to say if the Lupron did anything. It didn't slow the tumor growth. Grew 16 cm on that drug (from 12 cm start).
Nice to hear it helped you out. Was more a pain for me as it's only administered by a doctor and mine happened in the beginning of the covid shutdown and my doctor was horrible at that time. More concerned with her well-being, didn't even examine me during our monthly in-person injections (I have since gotten rid of her). I was one of only a handful she had to see.
Wishing you more recovery.

Re: Anyone else here on Apalutamide and Lupron?

Posted by Boby1511 on Sep 19, 2020 3:01 pm

Cooker47‍ 

Lupron has one bad side effect, if on the drug long term... bone loss, osteoporosis.
I have family history for this one so I was concerned.

Re: Anyone else here on Apalutamide and Lupron?

Posted by Cooker47 on Sep 20, 2020 11:33 am

I think it is too early to say Apalutamide "helped me out" as I only started on the drug two weeks ago. I also started my first three months on Lupron last week.
Reading the lists of possible side effects for both drugs is daunting, however so far I only have diarrhoea from the A. drug.
As for my bone cancer, apparently the right side of my ilium is mostly taken over and it is progressing. I am not certain whether it means that it is turning into cheese or what.
My earlier comment that drinking 2 tall glasses of milk daily seems hard is mostly a question of me not applying myself. I logged my calcium intake over three days and with the milk I will easily average more than 1200 mg a day. Taking more than that seems to be unnecessary, if not potentially dangerous.  
I'll have to ask my Medical Oncologist about outcomes generally: he offered to talk to that anytime, but initially I felt I was getting too much data.
I do not suppose that I will turn into a jellyfish anytime soon and I think managing the b.c. is more a matter of diet and exercise together with avoiding a fall. I have no pain so far.
I used to do karate, so now perhaps I can try Tai Chi. However, riding my bike is probably out for good. I fell off it a few times last year when I weighed nearly 300 pounds. Now I weigh below 220, but I still wobble a lot at any speed. It's best to avoid falling off any more.
I do a very slow walk (one doctor told me I wouldn't be getting any speeding tickets). I clocked 268 minutes in the last six days, but I have lots of time to smell the breeze and watch the birds, insects and plants and stuff.
I spoke to soon about the burning sensation I would get when taking a pee. Now I can control the back end more as I was used to doing normally, but I still have a lasting sensation of discomfort at the front end of my urethra and I am hoping 5 more days on Ciproflaxin will cure that.







 

Re: Anyone else here on Apalutamide and Lupron?

Posted by GlennK on Sep 20, 2020 12:55 pm

Thanks for all your replies.....I'm holding own on the SEs but I haven't been getting much feedback from my Oncologist and I believe he's leaving soon and I will have someone new. I'm here in PEI and I have reached out to my Brachy Oncologist in NB for a second opinion  on my treatment. 

Re: Anyone else here on Apalutamide and Lupron?

Posted by Boby1511 on Sep 20, 2020 10:53 pm

Cooker47‍ 

Good to hear you walking! 
"helped you out" I may have misunderstood thought you were saying the Lupron helped you pee.
My first serious symptom was that I literally could not pee!! For days!! Was so painful, they had to put in a catheter (for couple months).
The bone loss  (side effect) had me worried as I can't take iron or calcium as I have serious issues with constipation and most of the drugs I'm on for other stuff already have a constipation side effect. (iron very bad for constipation).
My doc in hospital did recommend I try the milk. 
I no longer am doing the Lupron, which is good for me.
I am sending you best wishes for strength and recovery.

Re: Anyone else here on Apalutamide and Lupron?

Posted by Jackwb on Oct 22, 2020 2:41 pm

I was on Casodex and Lupron for six months and the only significant side effect was extreme, suicidal depression, so bad that I was prescribed Lorazepam. A friend is on both as well and could not pee, used a catheter and had a TUIL earlier this year...he's on both treatments for another year but seems to be OK now. A few months ago he learned that his prostate cancer has now spread to his bones, had 5 hits of radiation but his PSA continues to climb. Two weeks ago his oncologist advised him that there are no tests or effective treatments for his type of PC and that there was no point in seeing him again. He sees his urologist in a few weeks after his new PSA test and is not looking forward to the meeting.

He is now busy cleaning his house, getting rid of all that stuff you accumulate over 50 years,..his wife is now in a LTC facility and he has to clean out all of her stuff as well. However I think that's not what his doctor meant when he told him that it was time to get his house in order.