Is it true chemo treatment in PCa is more of a quality of life measure as opposed to adding length of life? I've read (or heard) it may add 2-1/2 months, is this true? How does chemo add to quality of life with the side effects? Is there anyone here that has refused chemo willing to share their experience? Sorry for all the questions, this is on my mind. We've not had experience with Chemo. He's still on zytiga, had to dump Lupron due to cardiac effects, but we know he will need to get back on something at his onco visit next week. Any thoughts or experiences appreciated. Thank you.
Chemo: Is it true chemo treatment in... - Advanced Prostate...
Chemo
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Advo__cate
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I haven't refused chemo, but understand the quandary. I'm now entering my fourth month of docetaxel and all it's side effects, and really hoping there's more than four months of quality life afterwards to make it worth it. In my specific case, an initial dose of Eligard dropped my PSA dramatically, and the chemo seems to be having a similar effect on my alkaline phosphatase levels, so in my case there does appear to be a benefit in the test results even if it's not something I physically feel yet.
Two things to be aware of with studies: The control group is not untreated, and in the specific case of docetaxel the claim of two additional moths of survival appears to be relative to an older form of chemotherapy, and not "no chemotherapy". Also, statistics from studies apply to a population and not individuals. In most studies, there's usually a handful of individuals in the control group that live past the end of the study, while individuals in the test group don't respond to treatment and die early.
Suffice to say when an individual receives chemo, it really matters how they respond as an individual to treatment. Either it will work and they can gain many months if not years of life, or it doesn't work and they gain nothing except side effects and medical bills.
I am sadly in the latter group. No gain whatsoever just huge medical bills and side effects like hair loss, etc.
I have to say categorically that the quacks know very little about how to deal with cancer. Its all "standard of care" for the majority of them. Pity that we are so dependent on them.
If I remember correctly, you've never had any pain, so that's another way our experience differs. My blood numbers are fantastic, but every time the doctor injects something in me, including chemo, my pain increases for a while. We're living examples that this disease is different for everybody 
Standard of care does have its limits, but until genetic testing can better say what treatments will work for which patients I'm not sure what a better alternative is.
I agree with you 100% that we are ALL different.
As regards the SOC, the male quack told me that he had no option but to start me on Xtandi (after the docetaxel failure), then move onto Cabazitaxel, then Zytiga, then Provenge, etc,etc, as that was the Standard of Care routine.
The female quack told me that my bone mets looked bad and that she would have to think out of the box. She suggested that I first take Zolasta (injection for bone), then start on Zytiga, then check out Foundation One(molecular insights) and finally look up the nuclear people at Jaslok for Lu-177/Ac-225.
Figure the difference between the two quacks ???
From all that I have read about Lu-177/Ac-225 and considering that I am PSMA AVID, I think that there is more than a fair chance that this is the treatment for me.
The insight of the quack is very very important. Even today, Lu-177 or Ac-225 are NOT SOC in Bombay. But, it is being offered to those who can afford it and are willing to take the chance.
Cheers, tom67inMA !! All the very best to you.
I see your point, and the "female quack" sounds like she's doing the best she can with the tools available. Interesting that my treatment is following a similar path: Lupron, Xgeva, Docetaxel, and Zytiga after chemo. My MO has also started mentioning genetic testing.
I hope the lu-177 works for you, you deserve a lucky break!
Thank you for your good wishes, tom67inMA.
All the very best to you too. Cheers !!
I am starting to think that India is overrun with ducks. Here a duck, there a duck, quack, quack, quack. Enjoy
Do you know why ducks have flat feet? To stomp out forest fires.
Do you know why elephants have flat feet? To stomp out burning ducks.
Do you know how to say Duck in Chinese? Bend down.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 03/12/2019 9:44 PM EDT
Its almost the same everywhere in the world.
Most people give doctors an undue amount of respect, I do not. That is why I will call them QUACKS.
Having said that, there is a small minority of doctors who are GEMS. These are the guys I have the utmost respect for.
Well I think name calling is rather demeaning. They are doing the best they can with guess work and what science is out there.
We can agree to disagree.
I do not agree with you at all that "they are doing the best they can with guess work and what science is out there."
I have plenty of personal evidence to indicate that a good number of so-called doctors are bloody crooks.
You are absolutely free to believe what you want. I will continue to call them quacks.
Something to consider, thanks.
Advo_cate,
In my particular case, chemo (docetaxel) has not added even a day to my life. It has probably taken away a few weeks or months from my life. With ALL the poison that has gone into my body and no cancer being killed, what else can I say ??
But, we are ALL different. One man's meat is another man's poison
Cheers, Advo_cate, enjoy life !!!
This is true. Lupron was my husband's poison but it did squash the cancer while he was on it. It will kill him in short time if he goes back on it.
Well, at least in your husband's case, the saving grace was that Lupron "squashed the cancer". In my case, the chemo poisoned me 
You live and learn Hopefully
Squashed the cancer but accelerated CVD to the point of 95% blockages in 'widowmaker' & ' widowmaker of all widowmakers' arteries in less than 6 months and two shots. Not the usual for most men (thankfully), but for some...
Yep, chemo was useless for me. Also a complete waste of money, time/trouble and poison being fed into the system instead of some drug which could perhaps help.
For others, it may be positively harmful.
And, some actually claim to have benefited.
in reply to Advo__cate
and why can't he go back on degarelix?
Advo__cate in reply to
His cardiologist doesn’t want my husband on hormone therapy but admits he needs to be doing something for the cancer. So, we’re looking for options within SoC for his specific cardiac issue.With the stents he’s extreme high risk for any hormone therapy even if Degaralix is less of a risk it’s still a high one for him.
in reply to Advo__cate
so they told you that inserting the stents put him on higher risk? why? because they put it recently? did he get drug eluted stents and is taking double blood thinners?
Advo__cate in reply to
Yes, DES. Aspirin and Plavix. I’ts been a whirlwind but I think I remember hearing him say because the hormone therapy is working against his body with LDL filling the arteries...something like that, don’t quote me. It accelerates the damage.
this is helpful, thanks.
I had a LOT of pain, Oncologist said the Chemo will help reduce the pain levels, and 3 rounds in it has done exactly that, the Chemo has been a walk in the park when compared to the pain, I'm already feeling that I have better quality of life.
I'm glad to say that my National insurance covers all this treatment, the only thing I've had to pay for was the Diphereline as they only offered surgery, it's only 150 Euros so 50 Euros a month is nothing really.
in reply to Zetabow
The pain reduction was a big part in my evaluation of whether chemo was worth it. After going through the extreme pain of untreated stage 4 prostate cancer, all subsequent treatments were compared to that. Nothing I've done so far has come anywhere near the suffering I experienced prior to treatment. I would do chemo again without a second thought if it could give me any life extention with a decent quality of life.
My husband is not currently in pain, but we are fairly certain cancer is back on the move. The positive of Lupron is that it did squash the cancer to dormancy and helped him greatly with the pain at the time of DX.
Consider the following--ask your Cardiologist and MO--a switch to degarelix (Firmagon)--
I would consider saving chemo for later--that is my plan if I need it...in the Checkmate 650 trial....25% of chemo naïve patients responded to the meds vs those who had previously had chemo--10%.
If I ever need chemo, I would look at MM-310--a liposomal docetaxol formulation which should be more tumor specific--in Phase 1 trial... Patrick revealed a Cisplatin liposomal drug today-- they are making chemo "smarter"--more tumor specific... I'm gonna try and wait for the better versions... That and Veru-111... Science is advancing, but just not as fast as I'd like...
All the best,
Fish
We've considered it...pondered it, but had five stents placed last week and he's now considered very high risk for ADT. I wish we had the info we have now about ADT last year and we would have asked for Degarelix.
Thanks for the info.
in reply to Advo__cate
But is Zytiga better for CVD?
Advo__cate in reply to
I’m not sure if the Zytiga specifically has CVD effects or not, do you know? MO wanted my husband to stay on it while off Lupron, so my husband complied.
in reply to Advo__cate
i found this: onclive.com/conference-cove...
better to get more infos what is less dangerous and have an onco-cardiologist or a meeting between oncologist and cardiologist.
We found ourselves with an oncologist that even knowing about my husband's CVD suggested an agonist. But now she accepted to do degarelix.
Zytiga we are thinking of, because taking early gives you more chances, but maybe not good for CVD.
Advo__cate in reply to
We have had the hardest time getting the MO and Cardio to communicate. (Sigh) It’s like that NEVER happens. We would have been spared a lot of stress if they had communicated before the first heart cath. We are the ones giving the info to both docs. Had we been privy to the mild CVD found on the first scan and the known side effects we would have opted for Degaralix which he did have up front and MO went with Lupron after the initial shots. The risk is just too great now, we are’t comfortable moving forward with hormone therapy. We did move over to a different cardiologist who was not afraid to take him on for his complex case.
He’s the one that really doesn’t want him back on hormone therapy AND the one who did the complicated stenting.
in reply to Advo__cate
are you in the meantime trying alternatives against mets like MCP or Birm?
Advo__cate in reply to
We have BIRM but he hasn’t started it just yet, we need to find out if there are any medication interactions. What is MCP?
in reply to Advo__cate
modified citrus pectin
Advo__cate in reply to
Yes, he’s been on that since late 2017.
No, docetaxel and cabazitaxel add to both quality and quantity of life.
I think read an article by a doc explaining why chemo, that it was for quality of life not necessarily longevity. Patients were askng him, "Why chemo if it only will give me 2 -1/2 more months?" I think he was referring to a clinical study with his answer, he mentioned it was primarily for quality of life. I can't find the article, are you aware of any study about chemo and longevity?
I'm asking all of this beacuse my husband's PSA is creeping up after going off of Lupronm his last shot was last June. His testsoterone remains low but the PSA is now rising. It was up to 3.78 last onco visit six weeks ago. MO wanted him to get the cardiac issues taken care of so that he can get back on ADT or chemo or something. MO mentioned maybe a mutation and chemo but also that my husband responded so well to ADT that he's somewhat thrown off by the PSA rising off lupron.
Anyway, we are looking at all options in SoC without cardiac side effects to discuss with MO next week. My husband will be getting ct and bone scans to see where it's on the move. Thanks.
My mo told me chemo would give me 12 to 17 months more life.
The other info on Firmagon--less cardiac issues...
onclive.com/publications/on...
Sorry, it did not come through the last time....
Fish
I have used both Firmagon and Eligard and the one difference I notice is Firmagon causes a lot of pain and swelling on which ever side of my abdomen they give the injection, while eligard causes no pain at all. With the firmagon I am icing and popping Advil for about 5 days after the injection. I read where Firmagon might cause some injection site irritation, but for me its about a 6" diameter area that swells and turns bright red.
Not sure how they stack up against each other cardiac risk wise... I was aware of the tenderness at injection site but better that than a cardiac event...now, you've made my Lupron brain loopier and I want to compare firmagon and eligard... on Lupron, my train of thought is easily derailed.... LOL...
Fish
Im currently on Eligard (3 mo) and Xtandi........ I have the usual fatigue and brain fog, but cant tell if its better or worse than when on Firmagon. My professional opinion is the side effects from ADT drugs in general suck
Ok....eligard and Lupron same...cardiac events same....
yes, Eligard and Lupron same............ Firmagon different...... I go in for another Eligard injection in about 2 weeks,. Think Im going to talk to them about the cardiac problems that can come with long term use and see what they say. I can take the pain of the Firmagon if it keeps me from having a heart attack. Of course then one starts thinking.....death from heart attack, or death from cancer.....tomato, tomatoe
yes....Death stalks us all.... and as Syrio Farrell said in Game of Thrones... "What do we tell Death.?? Not today..." Live for today... my new mantra...Thank God for another day....each am...
Fish
We are learning to live each day...it's daily battle of the mind. My husband has been spared (so far) from the ultimate widowmaker, by human standards, he should be gone. We are grateful for this, but cancer is most likely on the move again while he is off Lupron, treatments available accelerating heart diseas...a cardiac event looms over us. God is faithful to walk us through all of this, nevertheless, it is a struggle. We only have the moment, we truly do not know from minute to minute if we will be here tomorrow. Our days are numbered, we are trying to set our thoughts on this truth learning and growing in these circumstances we've been given.
What do we tell death? "Not today. Not today." Youtube'd it and relived that moment. Thanks for the memories. Enjoy.
Dr Uzick tells me of a clean chemo done in Berkeley . My friend Edith 75 #4 breast C had great success with it.. I think it cost $20 k
Didn't need cardio issues. Fast growing, aggressive, invasive and metasticized at start. Fast rising PSA after RP. Onto Lupron for short time added Chemo. at PSA rising during chemo l added Xtandi. Pushed my health down to complete invalid. Finished chemo. 4 mo. later cut Xtandi, cut again and again. Got back to work, retired. PSA stable at 0.122. Xtandi at 86 mg average dosage. In remission. Hit it hard. Hit it early. Live long time. Well past original expiration date. Orchiectomy in the middle to get off ADT drugs for life. New normal different but having good life and enjoying grand kids..
Thanks.
Chemo sucks. It put me in ER twice and also a weeks hospital stay. I had 6 infusions of Taxotere. But if I didn't have this done at the beginning of my treatment process I wouldn't be here today.
Thanks for sharing.
My husband was on Chemo - first Docetaxol than CarboPlatin - for altogether nine months. I don't know how much longer the Chemotherapy would have worked, perhaps for another few months. But my husband got infections and passed away.
Certainly the Chemotherapy treatment made him lose his quality of life slowly but surely. He got weaker over time, felt often very exhausted, had nausea and lack of appetite and couldn't taste anything in the end.
Now, having said all this, I do think that many men survive better on Chemo and can live months or even years with it.
I think I would try it, and maybe it will help your husband to gain time and to shrink the cancer, and he can always stop the treatment if he feels it is getting too much.
Good luck and keep posting!
Mel.
Chemo damages the immune system. Therefore dying from infections is common for these patients.
Good to know.
Thanks again for your thoughts.
Had 18 mo. of hell with chemo. Made it out the other side. New normal much different, but have been enjoying life. Found out today T-10 left side collapsing. No wonder PT was having a hard time getting me back in shape. As if APC weren't enough to live with.
Yes, early-on Chemo seems to work for some men. But when they receive Chemo late in their illness, when the body is already weakened by years of cancer and by lots of immune therapy and low testosteron and all of that, it just doesn't deal with these drugs well, and in those cases you really have to ask the question of quality of life because you very quickly find yourself in a situation where every day is a struggle because of all the side-effects of the treatments. I think what makes the decision whether to go for Chemo or not so difficult is because you never know how you in your individual situation will react to the Chemo and how much quality of life you will be able to have and how well your cancer will respond to the treatment. Good luck.
Thank you.
I'm not aware of this...why would it be banned if it was helping people? What would be available in the SoC that won't further cardiac effects, do you know?
Thanks.
How many chemo treatments does a cancer patient need? Tumor.
Good Luck, Good Health and Good Humor.
J-o-h-n Tuesday 03/12/2019 9:58 PM DST
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