I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Gleason 10, spread to bones

Email this conversation Print this conversation
User
Posted 29 May 2014 at 22:26

After only eight months on Hormone therapy, my psa started rising. it has spread to my hip and a small area of the spine. I have had radiotherapy this week to these areas. Very worrying that it has failed in such a short time since I started the hormone injections. In a month I am having chemotherapy...is there anybody in a similar position?

User
Posted 30 May 2014 at 02:07
Hello Allybally,

you must be disappointed and anxious that HT has failed so soon but it seems your onco is not one for messing about - so many people fear chemo but in the case of PCa chemo becomes a passport to other newer treatments which are producing really good results for many men. Quite a few here have found that the chemo itself has given them a huge boost - check on Alathays who is just back from yet another cruise!!! A number of members are in the throes of chemo right now and I am sure they will be along soon to give you some support.

The only practical tip I can give you about chemo is to freeze chunks of fresh pineapple to suck during infusions - refreshing, seem to reduce the risk of painful mouth ulcers and also protect your taste buds so that all food doesn't end up tasting of metal.

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

User
Posted 30 May 2014 at 02:28
Hi Allybally,

Yes I can confirm what Lyn said about chemo. Back in early March I was told that I was terminal due to spread throughout many organs and soft tissue. Even not reaching Easter was muted. 3 lots of chemo later and I'm feeling so much better and enjoying life. How long that will go on for, who knows and right now, who cares!

Chemo, if that's the way it goes, is not to be feared.

Best of luck

Life is for living

Barry (alias Barrington )

User
Posted 30 May 2014 at 10:47

Yes, go for chemo. My partner was G 10 , spread to lymph, bone and soft tissue at diagnosis. Wish we had had a more assertive oncologist who had put him straight on HT and chemo, some research to say this is best move for high Gleason score with spread and asap.

We have lost months with the medics relying on PSA readings when the damn thing had gone castrate resistant at several months and spread, should have had earlier scans !

If yours is only spread to the bone, you have more options in terms of Trials and treatments, but right to get onto it as fast as can be organised. Wouldn't want anyone else to go through our experience ! Wishing you all the best,

 

Fiona.

User
Posted 30 May 2014 at 21:23

Just completed Chemo #13 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

 

Still here and in my 7th year post  diagnosis. If it works then go for it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Nil desperandum

Allister

User
Posted 04 Jun 2014 at 20:21



Hi Ally,



I too have been on hormone treatment for 9 months and I am due to undergo Chemo soon also,
probably late July after next test results.

Oncol seems to think this is the best way forward, so will go with their experience. I am hoping this will reduce symptoms, mainly the sudden need to go to the toilet and having to self-catheterise so often. (Maybe hoping for a little too much, but hey, where would we be without wishful thinking?)

Regards

Steve

PS

Pineapple chunks already in freezer!



 

User
Posted 05 Jun 2014 at 13:02
Hi

Sounds your consultant has everything under control.

Don't be scared of the chemo route as it has been said many men feel good after chemo .My husband was dx terminal and put straight on pallitive care but he was lucky with the hormone treatment sadly no more he will be having chemo #4 so far not helping but consultant has not given up still a couple of things in tool box and more important we wont give up

good luck to you

Carol

User
Posted 05 Jun 2014 at 17:10

Those men with bone mets who are lucky enough to live in England can also apply to the Cancer Drugs Fund for Alpharadin (Radium 223) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Nil desperandum

Allister

User
Posted 15 Jun 2014 at 09:22

Ask about Plato trial My husband may have chance to go on it 

Show Most Thanked Posts
User
Posted 30 May 2014 at 02:07
Hello Allybally,

you must be disappointed and anxious that HT has failed so soon but it seems your onco is not one for messing about - so many people fear chemo but in the case of PCa chemo becomes a passport to other newer treatments which are producing really good results for many men. Quite a few here have found that the chemo itself has given them a huge boost - check on Alathays who is just back from yet another cruise!!! A number of members are in the throes of chemo right now and I am sure they will be along soon to give you some support.

The only practical tip I can give you about chemo is to freeze chunks of fresh pineapple to suck during infusions - refreshing, seem to reduce the risk of painful mouth ulcers and also protect your taste buds so that all food doesn't end up tasting of metal.

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

User
Posted 30 May 2014 at 02:28
Hi Allybally,

Yes I can confirm what Lyn said about chemo. Back in early March I was told that I was terminal due to spread throughout many organs and soft tissue. Even not reaching Easter was muted. 3 lots of chemo later and I'm feeling so much better and enjoying life. How long that will go on for, who knows and right now, who cares!

Chemo, if that's the way it goes, is not to be feared.

Best of luck

Life is for living

Barry (alias Barrington )

User
Posted 30 May 2014 at 10:47

Yes, go for chemo. My partner was G 10 , spread to lymph, bone and soft tissue at diagnosis. Wish we had had a more assertive oncologist who had put him straight on HT and chemo, some research to say this is best move for high Gleason score with spread and asap.

We have lost months with the medics relying on PSA readings when the damn thing had gone castrate resistant at several months and spread, should have had earlier scans !

If yours is only spread to the bone, you have more options in terms of Trials and treatments, but right to get onto it as fast as can be organised. Wouldn't want anyone else to go through our experience ! Wishing you all the best,

 

Fiona.

User
Posted 30 May 2014 at 21:16

Thanks to each of you for your replies, amazing how a reply or two can uplift you at times like this.

User
Posted 30 May 2014 at 21:23

Just completed Chemo #13 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

 

Still here and in my 7th year post  diagnosis. If it works then go for it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Nil desperandum

Allister

User
Posted 04 Jun 2014 at 20:21



Hi Ally,



I too have been on hormone treatment for 9 months and I am due to undergo Chemo soon also,
probably late July after next test results.

Oncol seems to think this is the best way forward, so will go with their experience. I am hoping this will reduce symptoms, mainly the sudden need to go to the toilet and having to self-catheterise so often. (Maybe hoping for a little too much, but hey, where would we be without wishful thinking?)

Regards

Steve

PS

Pineapple chunks already in freezer!



 

User
Posted 05 Jun 2014 at 13:02
Hi

Sounds your consultant has everything under control.

Don't be scared of the chemo route as it has been said many men feel good after chemo .My husband was dx terminal and put straight on pallitive care but he was lucky with the hormone treatment sadly no more he will be having chemo #4 so far not helping but consultant has not given up still a couple of things in tool box and more important we wont give up

good luck to you

Carol

User
Posted 05 Jun 2014 at 17:10

Those men with bone mets who are lucky enough to live in England can also apply to the Cancer Drugs Fund for Alpharadin (Radium 223) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Nil desperandum

Allister

User
Posted 15 Jun 2014 at 09:22

Ask about Plato trial My husband may have chance to go on it 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK