Chemo, or not Chemo, that is the question - help - Advanced or metastatic cancer

User

Posted 17 Dec 2021 at 10:49

Hello All,

I have advanced prostate cancer with metastatic bony disease from diagnosis in May 2019. Back then my prognosis was that 7 years was unrealistic. I was started on Firmigon which brought my PSA down from 238 to below 0, but it bounced in the following months.
I was placed on a pill, which I do not recall the name, which was able to pull my PSA back down to about 4 or 5, but bounced again.
April of 2021 I was offered Radium treatment with a side of Zoledronic Acid after I had all my teeth removed. I completed the Radium, which was only 6 monthly injections, at the end of September. My PSA continued to rise all through this treatment but I was informed that the PSA really does not have any relevance during Radium.
A MRI scan shows that I still have bone disease but my organs are clear. Just managed to get a bone scan last week even though my oncologist said he saw all he needed to see with the MRI.
I had a phone consult with him yesterday after he had been able to review the latest bone scan where he indicated that the "bone problem" had got worse, also my PSA was up to 215.

His current prognosis is, if I do nothing, 1 year with 3 years being unobtainable.

Treatment offering now is Docetaxal, every three weeks for ten courses, or Estrogen.
The chemo will offer a potential extension of three months, unknown on the Estrogen.

My question is more directed to people that have walked a similar path, is the 30 weeks of feeling crap worth it for only 3 extra months? does the Estrogen work, has anyone tried it? Would it be better to be normal for nine months then start chemo?

I just want to make an informed decision.

Thanks for reading this

Paul B.

User

Posted 18 Dec 2021 at 09:38

Highland Lass, I was also 55 when I was diagnosed, but I have not had a treatment that has lasted more than a few months before the PSA started to rise again.
From how it was explained to me, from my first onco who was retiring in two weeks and was not going to invest too much in me, the HT would stop the food for the cancer and slow it or stop it for a time. I was told that a lot of men last years, some many, before another treatment option.
I was told that twice by different oncos and each time it has been a couple of months.

My current onco only offered Docetaxel as the chemo option, I have four weeks to decide which way I will go.
So far chemo looks to be the best route with another HT in reserve.

Best of luck to your husband, stay strong.

Paul B.

User

Posted 31 May 2022 at 07:26

You can't - only a biopsy can determine what type of prostate cancer it is. If his PSA rises again at next test, the medical team may start to suspect it though.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jun 2022 at 11:13

Hi,

Anyone having cold cap, which I recommend above, must have it everytime they have a chemo infusion.Otherwise the head hair benefits will be lost !

Also for wimps like me a couple of paracetamol helps cope with any discomfort of the cold water circulating around your skull.

Regards

Norm

Edited by member 02 Jun 2022 at 11:33 | Reason: Not specified

User

Posted 04 Jun 2022 at 00:10

Hi.

I am sorry you find yourself in this position. I can only answer your question from the point of view of a wife. My late husband did very well for almost 9 years, having hormone treatment followed by radiotherapy and intermittent hormone therapy giving us some periods of normality before he had to go on to zoladex every 3 months and arberatitone which he tolerated very well with little side affects. After almost 2 years his psa started to creep up again and he was advised to have chemotherapy. We weren't told at that time it would only give him a few months extra and he went ahead with the hope it would help for much longer but he only had 6 of 10 sessions before the pandemic caused the sessions to cease. The sessions themselves did not cause too much distress apart from a thinning of hair and swelling of feet and some fatigue. However the chemo did not work and the later side effects were very bad. His psa went up to 3000 and mets appeared in liver and bones. His kidneys were affected and he needed nephrostomies twice and his bloods were all over the place which meant a hospital stay during the pandemic which meant no visiting. Nails were affected and there was considerable pain and fatigue as well as extreme nausea. Had we known that all this would happen, I think the choice would have been to not have chemo and have quality of life for the remaining months as we both found it very tough. I couldn't help him to regain the two stone he lost in hospital and the emotional toll on him was very hard. I would have done anything to help him but the effects of the chemo did make his final weeks very distressing alongside the spread of the cancer.

Immunotherapy was mentioned. Would that be an option for you? If we had our time over again I think we would have asked more questions and explored every option available. Stilbestoral was never offered to my husband and even our oncologist could not understand why the chemo did not work.

Ask about every option available before you decide. Not everyone has the same experience. We were grateful that from diagnosis we had 9. 5 years extra and nearly 9 of those were reasonable and we did a lot in that time. My husband's experience was almost identical to that of Bazza who posted a lot on here before he died.

I wish you many more years and the right treatment for you.

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User

Posted 17 Dec 2021 at 14:41

Whether to try chemo is a very personal choice but generally, it is not about feeling crap for 30 weeks - it is about feeling a bit crap for a few days every three weeks and having to be more careful about infection risk, etc. Anecdotally, most people on this forum who are offered chemo take it. If you hate it, you can stop any time - even 3 or 6 rounds of docetaxel can slow down progression.

The estrogen option is probably Stilboestrol, one of the oldest prostate cancer treatments available. It is certainly worth a try as normal HT has not been successful - we had a member John who lived 10 good years on Stilboestrol.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Dec 2021 at 16:19

Thank you for your reply Lyn.
I understand that chemo is subjective, just that as my prognosis has changed and I only have limited time and options left on the table, I want to make an informed choice. While my onco is suggesting that chemo is the better option I am just wondering how others have fared if anyone has been balancing a similar dilemma in the past.
I have family members that have seen the toll that chemo has taken on close friends and family, and there did not seem to be any rest bite between sessions. I appreciate that I have to try it to see how it will affect me, but the general consensus is against the chemo at the moment.
Granted this is not the same cancer or treatment, but the process is the same.

I had been promised extended times on HT and Enzalutamide but as I have a particularly aggressive type of cancer, that did not pan out as they thought.

Paul B.

User

Posted 17 Dec 2021 at 16:38

Sorry to hear that Paul, I was diagnosed around the same time. I can only second what Lyn said, because it's a 3 week cycle, you don't feel carp all the time (or rather, I didn't on the upfront set of 6 cycles). About 3 days feeling rough, another 5 or 6 feeling a bit rough, the rest more or less normal. As mine was through the summer, I was ok enough to get some water-skiing/wakeboarding in (weather permitting) on about half the 21 day cycle (I wrote off about days 2 to 11 of the 21 days)? Stay strong and safe fella

Good luck to everyone coping with the insidious big C

User

Posted 17 Dec 2021 at 17:00

It is important to understand that there are many different kinds of chemotherapy drug, docetaxel is one of the easier ones to live with. Most men tolerate it very well; my father-in-law had 6 rounds of doce at the age of 79 and the biggest issues he had were a) his hair fell out and b) his wife wouldn't let him go to the pub on days 5 - 8 in case he caught something.

I fully understand where your view is coming from - my mum had chemo for a brain tumour and all it did was make her last weeks miserable. But docetaxel tends not to be like that.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Dec 2021 at 07:00

Tony has been on estrogen since march this year, it psa went from 22 to 7 in may and has now stated to creep up again but only a small rise to just under 8, he has had no side affects from it at all. If you do not want the chemo the stilbestrol is definitely worth a try.

good luck in whatever you decide

Barbara x

User

Posted 18 Dec 2021 at 08:50

Hello Paul

Sounds like you are in same situation as my husband. He's 55 and was diagnosed with advanced prostate cancer last October, with widespread bony mets. He did fantastic on abiraterone for the past year. Sadly, its no longer working. His onco said it was time for the big guns and only offered doxetacle as the next course of treatment. He just started that this week so too early to say how he's going to fair but really hoping he will do as well as he did on abiraterone.. Best wishes to you.

User

Posted 18 Dec 2021 at 09:23

Thank you Steve, that is inspiring. It is good to know that there is a chance that life can continue as normal on a reasonable set of days.
The gods know I need to get a handle on life, but not as much as wakeboarding though.

Lyn, that is very useful, thank you. My wife will not let me climb a ladder to get in the loft, not while she is watching anyway, let alone go out unsupervised. I have a SBC from an unrelated issue, (although a TURP has changed things a little so I am not so sure anymore...) so I have the worry of UTI as I have that constant attack vector. At the moment we do not go out with the risk of the other C.
My mother had esophageal cancer and she could not tolerate the chemo at all. I think she might have gone two rounds and stopped it. But as you say, there are different drugs for different cancers. If Docetaxel is tolerated and effective then that is where I will go.

Barbara, that sounds positive for arresting the progression for a while at least. I have been offered both the estrogen as well as Docetaxel, albeit not at the same time, so I might see how things progress with the chemo then try the HT.
The HT I am on now, and from the start of this journey, lost its effectiveness after about three to four months, but I like to think that it slowed the spread at least for a little while.

Thank you for sharing your insights.

Paul B.

User

Posted 18 Dec 2021 at 09:38

My current onco only offered Docetaxel as the chemo option, I have four weeks to decide which way I will go.
So far chemo looks to be the best route with another HT in reserve.

Best of luck to your husband, stay strong.

Paul B.

User

Posted 18 Dec 2021 at 17:38

Hi my OH was diagnosed 6 years ago at the age of 55 .PSA 23 Gleason 4+5 spread to para aorta lymph nodes ,he had 6 sessions of chemo 3 weeks apart .Maybe he was lucky but managed to work every day through it . Hair on head thinned out but he lost all body hair . I think after session 3/4 his PSA became undetectable and has stayed there since . He has been on the stampede trial involving taking a combo of Enzolutamide and Abiraterone since .
The main side effects are weight gain and fatigue but he is still working 5 days a week just at a slower pace .
It’s worth trying it ,you can always stop if it doesn’t agree with you.
Best of luck
Debby

User

Posted 30 May 2022 at 20:35

Hi all

my dad has recently been diagnosed with advanced prostate cancer found in bones and lymph’s

psa was ridiculous it was 7887 I’ve not seen anyone here yet with that. The primary biculatimide and the HT injection brought it down to 139. Only two months later it’s no longer working psa up to 240

hes been offered chemo or enzalutimide but we just don’t know what route to take. Looking at This thread I just was thinking maybe he is going to have same issues. Will chemo be the better option. So scared trying to help him make decisions. Any advice much appreciated

how are you paul?

User

Posted 30 May 2022 at 21:36

Originally Posted by: Online Community Member

Hi all

my dad has recently been diagnosed with advanced prostate cancer found in bones and lymph’s

how are you paul?

The highest we have had on here was 13000 and we have had a fair few around the 8000 mark. The highest my husband's urologist has ever seen was 160,000!

How do you know the injection isn't working? Have they measured your dad's testosterone? Are you sure that dad's first injection was a 3 month dose and they didn't give him a one month dose to start with, in case of major reaction? Was the onco going to put him on chemo or enzalutimide anyway or is that being suggested because his PSA has risen? Often, if a hormone treatment appears to fail immediately they try one of the other first line hormones before they chuck in a second line.

Having said that, if chemo or enza was in the plan already, it seems sensible to go for the rota first. Charities and patient groups have fought hard for the right to have enza before chemo and I don't think the NHS would ever have given in if it hadn't been for the pandemic

Edited by member 30 May 2022 at 21:37 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 May 2022 at 22:20

thank you for the reply. No they haven’t measured his testosterone levels

he is on the 3 month injection. She just decided today to do another test and was shocked his psa had doubled in two weeks.

as you say chemo or enz was always the plan. So probably best to just try this anyway. I thought they might adapt the injection first but maybe no point

do you happen to know how any of the 8,000 psa men are getting on?

User

Posted 30 May 2022 at 23:13

Worth checking with the GP practice that it was definitely a 3 month dose that they gave him - that is an error that has happened on here a few times!

Some of the men with starting PSA like your dad's are still here 5 years later. But they all had a good response to the HT which you suspect is not the case for your dad (although I still think it worth checking the practical things to work out whether it is a problem with the HT rather than him being hormone independent already). Trevor_Boothe (who had the starting PSA of 13,000) lived 5 years and for most of it was very well.

It would also be worth confirming that dad has adenocarcinoma and not one of the rarer types of prostate cancer that don't respond to HT - did he gave a biopsy and does it say adenocarcinoma on the pathology report?

Edited by member 30 May 2022 at 23:15 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 31 May 2022 at 04:19

They didn’t offer a biopsy as they said the psa was so high they didn’t need to. How do I check that it is or isn’t a rarer type? Thanks

User

Posted 31 May 2022 at 07:26

You can't - only a biopsy can determine what type of prostate cancer it is. If his PSA rises again at next test, the medical team may start to suspect it though.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Jun 2022 at 13:28

Paul,

If you do decide to have chemo.like I did, you could ask for a cold cap to be applied during infusions.This is slightly uncomfortable and will mean you have to wear it for about 2 hours rather than 1 without.However, you are unlikely to lose your head hair with cold cap.Its not just vanity but because you still look "normal" it's avoids having to respond to well meaning comments about your health issue.

User

Posted 02 Jun 2022 at 00:32

We were dancing last week with a friend who has completed #4 of 6 docetaxel infusions. I couldn't believe his full head of hair! He has been using the cold cap and is very pleased with the outcome. The only real side effect he has had is the mouth ulcers and awful metallic taste but his chemo nurse hadn't told him about pineapple so he is going to try that for the last two infusions.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jun 2022 at 07:27

Hi LynnEyre...that is just great for your friend not to have loss of hair with this cold cap. Unfortunately we asked about this 2 days ago at our 1st.Oncology appt as my husband starting chemo next week but we're told they don't offer it. We live in Northern Ireland so perhaps this is mot available here, so somewhat disappointing for hubby as has a great head of hair. Glad to hear about his few side effects also.

Regards Ann

User

Posted 02 Jun 2022 at 08:07

Hi Ann ,my OH didn’t use the cold cap and his head hair only thinned slightly ( made it go a bit wavy! ) but lost body hair that 6.5 years later still hasn’t returned ,apart from very fine arm hair .He was very very hairy before .As lynn has said about mouth ulcers ,Gary was given a mouth wash that he gargled with daily .

Best wishes Debby

Edited by member 02 Jun 2022 at 08:10 | Reason: Not specified

User

Posted 02 Jun 2022 at 11:13

Hi,

Anyone having cold cap, which I recommend above, must have it everytime they have a chemo infusion.Otherwise the head hair benefits will be lost !

Also for wimps like me a couple of paracetamol helps cope with any discomfort of the cold water circulating around your skull.

Regards

Norm

Edited by member 02 Jun 2022 at 11:33 | Reason: Not specified

User

Posted 02 Jun 2022 at 20:54

Hi Debby..thanks for your helpful reply re hair loss.. hopefully my OH will have only thining of hair also..fingers crossed. Take care Ann

User

Posted 03 Jun 2022 at 06:55

Hi Norm thsnks for reply re cold cap and hair loss appreciate all advice given. Take care regards Ann

User

Posted 03 Jun 2022 at 11:27

Hi Ann, I had the upfront chemo of 6 docetaxyl, lost no hair on my head (it was kept as a no 2 anyway) but did lose the "short and curlies". Started growing back a few months later though 😎

Good luck to everyone coping with the insidious big C

User

Posted 04 Jun 2022 at 00:10

Hi.

I wish you many more years and the right treatment for you.

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