My husband is 81, diagnosed spring of 21 with metastatic PC. PSA of 89. By July 21 they had him on Lupron and Xtandi by September. His numbers went way, way down so they were able to cut him back to half the Xstandi to help with dizziness issues that Xstandi & Flomax were causing, that helped but numbers crept back up, so he's now on 3/4 dose. He's been on it a year and is not the man I once new. He has suffered severe cognitive decline at a consistent rate since he started the treatments. The hot flashes are unbearable most of the time, he's gained 25 pounds or more and so miserable with no drive to do anything and has just succumbed to the side effects of low T . He was a viable healthy guy who walked alot, split wood with his wood splitter, fed his horses & cattle & drove his tractor daily etc,. Now he just sits. He has good blood work, eats super healthy and takes lots of supplements & vitamins with supervision from his naturopath. He does'nt like living like this. It is breaking my heart. I have friends who say "what about his quality of life?" I agree. We have talked some, but he is dependent on me for his health care decisions. We're seriously considering taking him off the drugs and letting God have his way with him. He has a strong faith and totally content with himself and his life, of course I want him to be happy and live as long as he wants, but he'd rather have his mind and some jam than go on like this. Sorry to ramble, I am hoping to see another oncologist and get another opinion and find out more. Just looking here for any feedback on quality of life v.s. length of life issues . Thank You and God Bless you all.
Xtandi-Lupron Side Effect Questions - Advanced Prostate...
Xtandi-Lupron Side Effect Questions
Perhaps you should discuss to change from enzalutamide to darolutamide which is very effective and it does not cross the blood brain barrier and does not affect the brain directly . Darolutamide has recently been approved for castration sensitive cancer.
Other option is abiraterone which is also very effective and it may be better tolerated than enzalutamide.
i am only on Firmagon injections (Degarelix) and I didn't experience cognitive decline. The major reason that I am on Firmagon injections only because of less memory effects.
Maybe you could ask your oncologist to change him from Lupron to monthly Firmagon (degarelix) injections if it is feasible logistically. You have to go monthly to get the injections.
If his PSA will be still low thsn he may stay only with Firmagon.
I can't say more as I don't know more about his cancer.
I personally had early chemotherapy 2 months after starting Degarelix injections.
Cabazitaxel (Jevtana) chemotherapy 20mg / m2 is milder than docytaxel chemotherapy.
I had extenzive number of bone mets. I am happy that I didn't have to deal with the Enzalutamide side effects for 4 yeard as I am still not using Enzalutamide.
If he can't get chemotherapy and still needs more then Firmagon injections than Nubeqa (Darolutamide) can be added.
I wish you all the best. Where are you getting treatments?
Could you please fill out your profile information if you have a chance? It would help others to respond more appropriately.
I like tango's suggestion of discussing with Dr. use of darolutamide instead of enzalutamide.
I have a feeling most of his issues are coming from the enzalutamide as it effects some guys that way.
Also there are drugs to combat depression, lack of drive, and help with cognitive issues like attention deficit.
I have not experienced enzalutamide but I had been taking Flomax and stopped due to hypotension side effect in me resulting in light headed and dizzy spells. It didnt hurt or change the frequency of urination for me. Trips to bathroom stayed the same after I quit Flomax.
Everyone reacts differently, but most of the side effects you mention have more to do with no testosterone, and little extra from the second-line drugs. I wish I could tell you that his choice is between good quality of life and length of life - it is not. Stopping those drugs will result in even more loss of quality of life, including pain, fractures, organ failure, and general loss of function. The basic problem is cancer, not the side effects of the drugs he takes. I wish he had better choices.
I did xtandi because I was on a clinical trial with Tak-700 at Huntsman Cancer Institute. The Tak-700 worked for 3+ years but was not significantly better than already approved meds so it was dropped. Zytiga was very close to Tak-700 so my Dr. Thought xtandi was a better option when Tak failed me. It worked for about 1 more year before it too failed. The good thing about xtandi is it is used without prednisone, where Zytiga needs prednisone.
i agree. I didn't use Prednisone during my early chemotherapy. And im Finland the docytaxel chemotherapy in one trial was administered without the daily dose of Prednisone.
And our member Brysonal who has a finish oncologist said that Finland don't like Prednisone therefore he was prescribed Apalutamide and not Abiraterone plus Prednisone.
I personally would rather take Xtandi or Apalutamide when they will hopefully soon approve it in Australia.
I have enough dramas with my going up and down blood pressure just being on Firmagon injections alone.
I just received today my monthly injection of Firmagon and my heart rate was 95. Usually my heart rate is normal from 55 to 80.
I belive that my heart rate was 95 because my body temperature was around, up to 37.8 C.
Now it is normal about 70 when I am in bed.
Probably my temperature is also normal now.
With Abiraterone and Prednisone some people have swollen ankle and other negative side effects.
I don't have any personal experience with Abiraterone. Maybe I would tolarate it.
I am castrate resistant now and have had 8 or 9 docetaxel infusions with a couple of breaks in between due to other health issues and surgery. It has mixed results on my scans now. my PSA is inaccurate as it always reads low numbers, so the oncologists do CT / Bone scans every 3 months. My last PET scans with flucovamine 18 showed slight progression in right hip bone (already had right femur rod and screws placement for earlier lesion) but showed 1 enlarged pelvic lymph node had shrunk from 27mm to 18mm so it's a mixed result. They say we will continue docetaxel / prednisone as it hasn't shown definite failure yet. We are waiting for Huntsman Cancer Institute in Salt Lake City UT. to get issued Locamets detection tracer and Pluvicto (Lutetium-177 PSMA) treatment. Not available there yet. If docetaxel fails completely, it's on to cazabitaxel until I can get Pluvicto. After all that, it's up to clinical trials. I'm going on 8 years fighting this and still have low volume metastases to 12 pelvic lymph nodes and 2 bone lesions so not doing too bad so far. I still feel good and I work full time and have a good QOL. Hopefully newer meds will be coming out of trials and getting FDA approval in the near future. I cannot use several new ones because they rely on having genetic mutations, which I do not have. I have done extensive genetic testing and no DNA mutations were detected.
I keep hearing this talk of not wanting prednisone which a small dose is prescribed with Zytiga. Zytiga eliminates the small amount of corticosteroid produced by the adrenal gland so a small amount of prednisone is added to make up for that. Its not like an additional amount of steroid in your body.
Just my 2 cents.
The registra in the public Hospital agreed with me that Xtandi would be better for me.
I understand what you are saying.
Here in Australia i can have only one payed by our government in my lifetime.
When Xtandi fails i will do chemotherapy and pay for generic Abiraterone.
The problem is that they only pay for one. The same rules apply in UK. I believe Australians copied the British NHS. NHS also pay only for one in your lifetime. If you have chemotherapy and would like to try to continue with the other option NHS will not pay (you have to pay from your own pocket if you have 3.5 k A$ per month.
Oh my.
Well at least it seems you have a plan which works around the impediment of health insurance. I can see going in the direction your going Xtandi, Chemo, Zytiga--out of pocket. I believe Zytiga is less expensive and available thru India etc. so that probably works best for you.
we will see
You are correct at least that is the plan
Maybe i am wrong, but I am only an almost homeless migrant and my resources are very limited and I am not treated like others. My culture is more like an east European. Definitely not Australian. I have a feeling that I am slowly becoming one of them.
Therefore I am very strange person in the eyes of Australians.
He other option is to join clinical trials with all the problems related to the clinical trial.
You may need to wait or you have to go through all 6 cycles of lets say Lutetium treatment with 8 weeks in-between the cycles. Even if for you 3 cycles would be better. They also monitor toxicity. You are a guinea pig.
Maybe for you 4 weeks between Lutetium infusions would be better they will give you 6 cycles with 8 weeks in-between.
Clinical trials are a risk for you. Big money is involved. They're very inflexible.
I will rather not take part in them until I have other options.
?? Sorry confused. Are you addressing me directly regarding risk etc. of trials?
Sorry, it was not my aim.
I am just saying that clinical trials are our opinion when we run out of money.
Especially double blind trials look very strange to me.
Hmmm.
Some people get into trials early in their treatment and for them double blind is not so terrible necessarily.
All trials have the advantage of heightened overview of the patient--scans, labs, genetic tests, consults, etc.
The day arrived for me to choose chemo in light of Zytiga no longer holding down my PC (again as I had chemo at diagnosis 3 years ago) and I am excited or pleased to be trying to get in a trial recommended by my Dr. which guarantees I receive chemo and I might have Ra-223 added. It is unblinded so I will know if I have the Ra-223 or not.
Then again I guess I know what you are saying. The insurance approved protocols will end and so going on a trial thats paid for might become the only option.
Different insurance etc. here in the states but I am by no means a wealthy man. If there is a overseas treatment or one not covered by insurance I dont have the funds to pay for it.
it is all work in progress for me.
I am not jumping into anything.
I am just informing myself.
how many bone mets do you have?
Do you have bone pain?
Skull to shins.
Diffuse skeletal metastases.
Pain in not a requirement for Ra-223 if skeleton is littered with mets.
do you have a good oncologists?
Do you have a team looking after you?
I don't want radium 223 now. I was advised by my oncologist professor Epstein that I need systemic therapies.
Radium 223 is only a local therapy.
I wouldn't jump into radium 223 without bone pain.
Maybe you are better informed thane.
I thought that radium is only for paliation.
They say Xofigo can add to your life 4 months, but maybe it can shorten your life?
One member died after Xofigo.
Why do you need to go through all 6 cycles? Do you know something about this?
do you have a good oncologists?----quite good.
Do you have a team looking after you?--yes
I don't want radium 223 now. I was advised by my oncologist professor Epstein that I need systemic therapies.--yes there are systemic therapies prior to ra-223 which is also systemic to the skeleton
Radium 223 is only a local therapy.--sorry wrong. it is systemic especially in terms of bones.
I wouldn't jump into radium 223 without bone pain.--if you had more bone metases than actual healthy bone and no pain maybe you would think differently.
Maybe you are better informed thane.--I doubt it.
I thought that radium is only for paliation.-- all treatment of stage 4 is palliative really so in a sense yes it is palliative but I dont think in the way you mean it
They say Xofigo can add to your life 4 months, but maybe it can shorten your life?--if you have no response to a treatment as not all of us are the same then you might not have any benefit
One member died after Xofigo.--one or more died after lu-177, one or more died after chemo, one or more died after Xtandi, one or more died after.......etc.
Why do you need to go through all 6 cycles? Do you know something about this?--its 10 cycles' reduced dose chemo if I am in the group with ra-223 added
I have noticed you seem to have a strong bias against ra-223 and you have just started in the sequence of treatments. You hopefully may never need to even consider it for yourself.
God should be with me.
One member had Xofigo and 4 more bone mets popped out. Interesting.
Be careful with Xofigo. It can break bones. That is the last thing what I want now.
I wish you luck with your treatments.
RCT trials proved that Zometa or other bone builder eliminated fractures from Ra-223 therapy.
Again we don't all have the same genetics and importantly our cancer is not alike. We don't all respond the same. Some don't respond at all. Speaking anecdotes about someone getting 4 additional bone mets while treated with Ra-223 has no meaning.
you could be right abot no meaning in telling stories about 4 bone mets popping out.
My oncologists didn't really recommend Xofigo nor Provange.
And I don't have money for Xofigo even if I want it. I saved up money but I am not going to spend it on Xofigo.
At the start of my desease I was interested in Xofigo and I saved up money for it, but I will only use it for paliation.
I had sciatica nerve pain. Believe me I know what pain is.
Sure.
Do you have stage 4? All stage 4 treatment is palliative so you would currently be getting palliative treatment if you are stage 4. In stage 4 even the so called regular treatments lupron, Zytiga are considered palliative.
If you don't have very many bone metastases then you are not a prime candidate for Xofigo/ra-223. Not sure why you keep bringing it into discussion and criticizing it.
Not what you're looking for?
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