Help or Advice please: I have been on... - Advanced Prostate...

Advanced Prostate Cancer

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Help or Advice please

ARIES29
ARIES29

I have been on this cosudex or bicalutamide trip for some months now & feal like crap,but i know thats what it does so now we come to the Lupron or luprin shots.

Psa rising & normal T levels so i ask the MO what is the alternative to Luprin as i had bad side effects. No reply, but castration was an option. I suspect there is more money to be made.

I read in a post here that somebody had no side effects with Elegard. Any thoughts please.

31 Replies

Do you still have your Prostate?

Nalakrats

ARIES29
ARIES29 in reply to Nalakrats

Yes, had radiation back in 2012 with psa levels up & down since.Now lymph nodes involved.

ARIES29
ARIES29 in reply to Nalakrats

Still have prostrate Nalakrats because they do not operate after radiation i am told,now it is surgery of testicles to stop production of T they want & i dont want to go there yet anyway.

Nalakrats
Nalakrats in reply to ARIES29

Yes some Surgeons will do removal of prostate after Radiation--you are being recited Standard of Care Practices---My surgeon who has done over 1,000 RP's, and over 100 Salvage RP's---removal after radiation. He teaches this at Duke--it is not easy--so you need an experienced surgeon who has a lot of experience--and---understands that there will be a benefit. If no benefit, not worth finding someone. IMO there is a benefit if done right--where they get thru the scar tissue and get all or close to all the tissue.

But I am not a Doctor--expressing myself as myself.

Nalakrats

ARIES29
ARIES29 in reply to Nalakrats

Interesting... There certainly is a benefit of removing the prostate first as that is where it all started,so i will ask the oncologist again & if the standard reply is no the search for an experienced surgeon will start,even here in Aust im sure they have experienced surgeons.

You would have to ask why they offer radiation as a cure when so many are not a complete success?

Nalakrats
Nalakrats in reply to ARIES29

There are lots of things to consider, where Radiation is the Option. In my case my pathology dictated that my cancer would resist the radiation, requiring more treatments than necessary--instead of the standard 39-42--I was looking at 60.

This would have given the cancer time to get out further from the capsule.

I went in at 8 AM on a Monday and was home 2 PM the next day. No we did not get it all. As I had escaped Pca cells get into the blood---micro metastases---But this was it being in the blood a good place to go to war with it.

Everyone is different---there are studies about which pathologies do better with radiation, and which to not. RO's are not MO's.

Nalakrats

ronronHU
ronronHU in reply to ARIES29

If you are anywhere near Melbourne, I would recommend visiting Dr. Declan Murphy at the Peter MacCallum Cancer Centre. He has spent a lot of his time helping me though this journey even though I have never met him or been asked asked for any reimbursement.

ARIES29
ARIES29 in reply to ronronHU

Nowhere near Melbourne thanks anyway ronronHU.Will travel to Newcastle Mater hospital if i have to but im a long way north of there.

My doctor won’t remove the prostate as the cancer has already left and went Mets. Said it would do no good at this point .

sorry---my cancer left also---and we still took it out---we call this debulking---getting the mother load out---so that you have less of a load to fight with drugs or other things, thus I went from high burden to low burden.

Again Sorry,

Nalakrats

I was on Lupon for 9 mo. out of lifetime treatment and went with bilateral orchiectomy ( fancy word for casteration ) VA picked up 100% with my local urologist. No more T. Side effects from that but no long term side effects from drugs. Planning to live another ten years so didn't need cardio vascular problems ADT drugs can lead to. Also just had my thumb rebuilt so I can enjoy a working hand for next ten years too. Got to fight like all predictions from Dr's are wrong, already lived longer than first prognosis and have pushed PSA down to,0.137 from mid 60's and cleared all soft tissue mets from scans. Now two shrinking and one active bone mets. Meeting with back Dr tomorrow, VA dr Weds, Blood tests and oncologist for Thurs. and PCP on Friday. New non cancer problems on CT scans , lung scarring and two partially collapsed lungs. Always something new to worry about.

Doug-AZ

ARIES29
ARIES29 in reply to Shooter1

Wow Doug-AZ, you have more problems than me for sure. Cardio vascular problems interesting. I see local DR today about heart or chest pains from Duromine i think reacting with cosudex. Castration not option for me yet anyway

Have you tried zolodex?

ARIES29
ARIES29 in reply to YostConner

Have not tried Zoledex yet thanks YostConner, but maybe on the menu soon?

Same active drug, different manufacturers and injection details. The amount the oncologist charges to the health care system or insurance for one or the other is likely to be roughly comparable. See also, perhaps:

csn.cancer.org/node/252787

Some men may do better or worse with the periodic shot in the hip vs. an injection under the skin near the navel. Technician skill and technique might have some minor effect on that. There might be something involving inactive ingredients in one or the other to which some men might be sensitive?

As for the symptoms associated with Androgen Deprivation Therapy and the lower levels of testosterone, it is likely a "wash" between the various LH releasing hormone (LHRH) agonists that stop the production of luteinizing hormone by the pituitary gland, and, as a consequence, lower testosterone levels from the gonads.

Charles

ARIES29
ARIES29 in reply to ctarleton

Thank you Charles for that article,interesting it is the same drug

As ctarleton said, it is the same medicine (leuprolide) in Lupron and Eligard, and it is unlikely that the side effect profile of Zoladex would be much different for you. Firmagon works in a different way, and you may find you like it better. Injection site reactions are common on the first two shots but get better. It has to be injected monthly, but multi-month injections are in the works. Orchiectomy may have fewer side effects than medications, but you can't be on intermittent ADT with it.

ARIES29
ARIES29 in reply to Tall_Allen

Thanks again T Allen,i will ask for Firmagon next visit to oncologist & let you know if it is available here.

Please note that the side effects of drugs are different for different people. So until you have tried it, you don't know how the drug will affect you. Low levels of testosterone brings it's own problems, but I think those are common no matter how you get there (surgical or medical castration) like loss of sex drive and ED issues. Other than those, I have minor hot flashes and that's about it. Some men on here report no side effects from Lupron. So I would try it and if you do have some issues, then see about alternatives. I had Degerelix but hated the shots into the stomach, so I think Lupron isn't too bad.

ARIES29
ARIES29 in reply to cfrees1

I tried one shot of Lupron cfrees & a corse of cosudex tablets,it reduced the PsA to 1 which was what they wanted but i put on a kilo of weight around the stomach area due to beign asleep 18 hours a day,hot flushes & almost had a bad car accident asleep at the wheel.

So i will not go there again. Will ask for Fimagon & thanks for the reply.

I understand what you feel like. I had surgical castration. It takes away much of the fun of life. It also seems to work only for two or three years, after which the Beast is up again. Do have a deep think before taking up the option of surgical castration. Let it be the last LAST Given a chance again. I would not agree to it as I did 7 years back.

ARIES29
ARIES29 in reply to drsridhar53

Thanks drsridhar53,good advice i reckon. That is a big non reversible step to take for sure. Makes one ponder on the value of life itself.

Have been on Zytiga,Prednisone and Eligard with very minimal side effects.

ARIES29
ARIES29 in reply to leo2634

The MO said Zytiga & prednisone is the next level for me so i will keep that in mind Thanks Leo2634

Sorry to say but side effects are about the same with Elegard, doctor switched me over about 6 months ago. Same hot flashes. Only difference is the shot stings when administering it instead of got the week after. Welcome to our chat. 😀😀

ARIES29
ARIES29 in reply to larry_dammit

Not good news Larry_dammit.I will not take luprin & if you say Elegard is the same i might have to make history & come up with something new or just go to the next level or leu 177 when psa 20 or over. Thanks for the input

I was on Lupron, casodex and avodart for two thirteen month stints. But I switched from Lupron to trelstar about half way through the second pass and side effects seemed better

ARIES29
ARIES29 in reply to Break60

trelstar? i will mention that as well next MO discussion soon,thanks Break60.

Well between the chemo ,ADT , lupron and Xgeva I have been chemically castrated, PSA is at .005 so undetectable. No hair under my arms ,facial hair just about gone, and my poor testicles are the size of peanuts. 😜😜😜 But I’m on the right side of the grass 😀. Keep up the fight.

Break60
Break60 in reply to larry_dammit

😂

ARIES29
ARIES29 in reply to larry_dammit

Well Put Larry!!!,right side of the grass,got to keep that in mind.

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