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ANY THOUGHTS PLEASE

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User
Posted 10 Jun 2014 at 14:13
Just had a call from GP to ask about repeat that handed into surgery.

Eric is still on 3monthly prostrap injection I know this is normal to stay on even although not working anymore with Chemo Bicalutamide given before Chemo no joy. Was told Eric would continue to take this med with Chemo this was by a registar at hospital.GP informed me today that Bicalutamide was only to be given until Chemo started he has this in a letter from hospital.

We will see onco on Thursday just curipus until then

Carol

User
Posted 11 Jun 2014 at 11:27

Hi Carol

If I have read correctly you are queerying if Eric's Bicultamide should be stopped by your GP not the injections.

Mick had to stop taking Bicultamide before the chemo and in his case he also had the zoladex implant stopped, the few others I know having similar treatment continued with their injections but did not have bicultamide. I know that bicultamide or similar is always given prior to first starting on hormone implants and sometimes for only a week or so after the first one purely to prevent tumour flare.

When Mick stopped chemo and went back onto Zoladex after a 6 month gap he had to have bicultamide for just 14 days before the first implant and 7 days after to prevent any further tumour flare.

If Eric has had his injections without any breaks then biculatmide is not necessary during chemo as the combined side effects can be too much for some. This may be why your Oncologist has stopped it for now.

best wishes

xxx

Mo

 

User
Posted 02 Jul 2014 at 13:29
Hi Carol,

Unfortunately the apparent loss of friends is not uncommon. Actually you haven't lost anybody it's just that they don't know what to say. We have all come across this situation and sometimes it is best for you to cross the road so to speak and open up a conversation. This can be difficult but helps in putting the other person at ease.

A drop in PSA is of course normally a good thing but I can understand where you are coming from, my PSA has never been lower but as you will know the evil little PCa cells have spread at an alarming rate. I can't pretend that all is fine and last weekend I felt like death warmed up and felt that I had lost the battle. However today is another day, reserve forces came in from the left flank and the battle for now has turned my way. Eric must keep fighting, keep positive and have belief that although he may not win the final battle there are a lot of skirmishes along the way to win.

Life is for living

Barry (alias Barrington )

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User
Posted 10 Jun 2014 at 21:46
Don't take this as read Carol but I has understood that bicalutimide was stopped before chemo. Hopefully one of our guys and gals that know for sure will be along soon.

Lots of love

Allison xx

User
Posted 10 Jun 2014 at 22:07
Hi Alison

Thank you for the reply will see onco on Thursday but it was just one of those things that niggles being told one thing then being told another.

Just hope it wont do him any harm.What am I like

Carol

User
Posted 10 Jun 2014 at 23:35

Hi Carol,

It is always confusing to be told one thing and then another, it just sends you into a spin. Trevor can't have chemo because of his heart problems so I can't advise you on that but we had a similar situation with the bicalutamide, apparently in our very early days it should have been stopped when we started on prostrap injections. I did worry about this in the early days as I thought T would be having too much.. Just to put things into perspective T is know having , bicalutimide, prostrap and Zometa and some thing seems to be working. It could also be the turmeric or the Pom juice

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Jun 2014 at 04:05
Hi Carol,

Just to let you know that I am still on Prostap along with my chemo ( next armful on Thursday ). I did query this twice, once before I started chemo and again before my 3rd session. My Onco who I have known and trusted for years was quite straightforward in saying yes continue with it. The only qualifying thoughts I have are that my PSA has kept going down (0.29) whereas most with metastatIc spread would normally expect their PSA to rise.

Best of luck

Life is for living

Barry (alias Barrington )

Edited by member 11 Jun 2014 at 04:35  | Reason: Not specified

User
Posted 11 Jun 2014 at 10:55

Hi Carol,

Neil has been told to stay on Prostap whilst having chemo though he is castrate resistant. Never had any experience of bicalutamide other than for tumour flare at start of treatment. As for being told two different things, we get that all the time so I really sympathise ! Love to you and Eric,

 

Fiona.

User
Posted 11 Jun 2014 at 11:27

Hi Carol

If I have read correctly you are queerying if Eric's Bicultamide should be stopped by your GP not the injections.

Mick had to stop taking Bicultamide before the chemo and in his case he also had the zoladex implant stopped, the few others I know having similar treatment continued with their injections but did not have bicultamide. I know that bicultamide or similar is always given prior to first starting on hormone implants and sometimes for only a week or so after the first one purely to prevent tumour flare.

When Mick stopped chemo and went back onto Zoladex after a 6 month gap he had to have bicultamide for just 14 days before the first implant and 7 days after to prevent any further tumour flare.

If Eric has had his injections without any breaks then biculatmide is not necessary during chemo as the combined side effects can be too much for some. This may be why your Oncologist has stopped it for now.

best wishes

xxx

Mo

 

User
Posted 11 Jun 2014 at 12:50
Thank you all for the replyi's I knew you would be able to shed some light on this problem that the more I think about it I am not happy.

Googled question but no help I knew I would.get help on hear through experiance.

Mo I ment when eric had prostrap as you know stopped working next step bilucamide with prostrap no joy next steriods with above then Chemo with all of above.

When Eric was told he was to start chemo it was the onco registar that we met with .I asked if Eric had to stay on all of the above meds he said yes.It was a phone call from GP as I had put in for a repeat of bilucamide he said he had a letter from onco to say Eric would stop this medication I wonder is this why his chemo is having no effect also read patient leaflet a lot of symtoms Eric has been having lately are lately are down to bilucamide will find out tomorrow.

Carol

User
Posted 11 Jun 2014 at 14:53

Hi Carol,

Good luck for tomorrow.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Jul 2014 at 19:59

Hi Carol,

I have seen that you hadn't posted for a while and I was a little bit concerned, Is everything OK .

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Jul 2014 at 10:20

Have been thinking about you and Eric. Let us know how things are. Love,

 

Fiona

User
Posted 02 Jul 2014 at 10:49
Hi Wee Wifie on a need to know basis I need to know how you and Eric are,hope all is well.Diesel x
User
Posted 02 Jul 2014 at 13:07
Hi Julie

thank you for your post to be honest I was happy to see it as at this moment in time I am feeling a bit hurt and angry with people who we have known for many years all of asudden not even as much as a phone call a quick visit or when they are on facebook they could just ask my daughter how is he or tell your dad I said hi thats what I liked about my last summer documentry on channel 4 the couple who had the same problems not looking for the sympathy card as I asked one of my nieghbours why she was avoiding me she said dont know what to say to you how about hi like you always did.Thats what I like about you and others we have never met but you have taken the time to ask how we are that has made both Eric and I feel good so thank you julie.and thank you Fiona and not fogetting disel liked the need to know basis.now after all my little mo an the last time I posted Eric was seeing onco still having chemo the

only change in bloods was a dip on psa some people might say thats good not when your dx terminal with metatistic cancer and HT dosent work so he still is having more spread even with a lower psa Eric has a lung infection its being treated no smpathy please he's still smoking like a chimney as onco told him all his other conditions smoking would have played a part in his coditions but dosent affect pc!!!!!

We are seeing onco Thursday will get results of spread

User
Posted 02 Jul 2014 at 13:28
Hi Julie

thank you for your post to be honest I was happy to see it as at this moment in time I am feeling a bit hurt and angry with people who we have known for many years all of asudden not even as much as a phone call a quick visit or when they are on facebook they could just ask my daughter how is he or tell your dad I said hi thats what I liked about my last summer documentry on channel 4 the couple who had the same problems not looking for the sympathy card as I asked one of my nieghbours why she was avoiding me she said dont know what to say to you how about hi like you always did.Thats what I like about you and others we have never met but you have taken the time to ask how we are that has made both Eric and I feel good so thank you julie.and thank you Fiona and not fogetting disel liked the need to know basis.now after all my little mo an the last time I posted Eric was seeing onco still having chemo the

only change in bloods was a dip on psa some people might say thats good not when your dx terminal with metatistic cancer and HT dosent work so he still is having more spread even with a lower psa Eric has a lung infection its being treated no smpathy please he's still smoking like a chimney as onco told him all his other conditions smoking would have played a part in his coditions but dosent affect pc!!!!!

We are seeing onco Thursday will get results of spread don't know if chemo#5 will be given due to infection said he's not telling her about it think she will notice breathing is bad still no side affects from chemo and his hair is just slightly thining now he's happy about that as you know that was the only thing that bothered him he puts the change down to the Nioxin treatments that our daughter gives him.Walking is bad refuses to use any aids thats a big No No to him feels that things are changeing now with his body still ripvanwinkle his medication knocks him out for hours yes Julie still give him a wee poke now and again for the rest of you scottish for nudge nothing else as Eric would say chance would be a fine thing he means having a cuddle.

Julie bet your sorry you asked now after this long winded reply.Diesel I'm not wee 5 9 ok thats in 4inch heels.

Thank you all again for the posts means alot.

Carol

User
Posted 02 Jul 2014 at 13:29
Hi Carol,

Unfortunately the apparent loss of friends is not uncommon. Actually you haven't lost anybody it's just that they don't know what to say. We have all come across this situation and sometimes it is best for you to cross the road so to speak and open up a conversation. This can be difficult but helps in putting the other person at ease.

A drop in PSA is of course normally a good thing but I can understand where you are coming from, my PSA has never been lower but as you will know the evil little PCa cells have spread at an alarming rate. I can't pretend that all is fine and last weekend I felt like death warmed up and felt that I had lost the battle. However today is another day, reserve forces came in from the left flank and the battle for now has turned my way. Eric must keep fighting, keep positive and have belief that although he may not win the final battle there are a lot of skirmishes along the way to win.

Life is for living

Barry (alias Barrington )

User
Posted 02 Jul 2014 at 21:59

 

Hi Carol,

Not sorry that I asked , just glad that you posted as I was getting worried. Eric's breathing sounds like Trevor, he is dreadful at the moment.

I will keep everything crossed for you and Eric that chemo number 5 can go ahead. I also understand about Eric and the stick, last year when Trevor could barely stand he also refused a stick, sometimes our men can be so stubborn. He would steady himself by leaning on Zack's shoulder.

You do make me laugh with your wee poke.

Try not to get to upset with people, some people find it so difficult to find the right thing to say, sometimes they are afraid to just say hi . It's one of those situations in life that is very complex. I sometimes feel when people ask how Trevor is they don't really want to know, almost as if they feel they should ask and when I tell them I can see there faces thinking bloody hell I wish I hadn't asked. 

Keep your sense of humour up, I always find it helps for me .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Jul 2014 at 22:16
Carol, don't waste any of your indomitable spirit on people who don't give you the support you know you would give them. I agree with Barry & Julie that some people just don't know what to say or are frightened of upsetting you but I also think quite a lot of people are scared that someone else's illness or bad luck will somehow rub off on them. We have found that some who we would have counted as close friends turned out to be chocolate teapots whilst others that we perhaps weren't as close to have been wonderful. I often think about when my brother died and someone I knew very well and had helped a lot crossed the road rather than have to talk to me.

You have such a big heart, it is sad that others can't match up to you but perhaps we should just pity them for not being as lucky. Same goes for you Julie - true friends will keep asking and never wish they hadn't.

Take care both xx

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

User
Posted 03 Jul 2014 at 02:58

Carol I am still here too and as always wish you and Eric all the best, hopefully chemo 5 can go ahead, if there is any chest infection present it may have to be delayed until that is cleared up. Our Onco said that a break halfway through is often a good thing anyway.

People can be very frustrating, it is like those that say stupid things like " you don't look ill" sometimes not saying anything is their way of hoping they don't say the wrong things. 

Hope all goes well tomorrow and so glad you are posting again.

xx

Mo

User
Posted 03 Jul 2014 at 09:33
Saw this recently and thought it was apt:-

FRIENDSHIP IS NOT ABOUT WHO YOU'VE KNOWN THE LONGEST

IT'S ABOUT WHO WALKED INTO YOUR LIFE, SAID "I'M HERE FOR YOU" AND PROVED IT

take care

Bri

User
Posted 03 Jul 2014 at 12:32

What a philosopher you are turning out to be, Bri, lovely quote. Carol, there are many on this forum who are there for you and Eric !

 

Regards, Fiona.

User
Posted 03 Jul 2014 at 16:00
Thank you all for your kind replys. Must have been a little down yesterday to post my feelings towards so called friends that have known Eric since school they even got married to sisters were still in touch with each other after Eric got divorced.

When Eric was in the 3day coma I was told to send for the family as they thought he might have suffered brain damage.This is for the all the wives on here it wasn't funny at the time but now it is .When Eric came around doped up he kept holding my hand telling me how much he missed me oh you might say no he thought I was his first wife didn't know Carolann (OUCH).The point of this story is that his friend was so angry with me for not telling him that I had many phone calls from other people telling me I was in the wrong as this person was so upset sorry but it wasn't about him Eric was the one in hospital that is what I mean he is the one that cant pick up a phone thats my vent over.

We had a 2hour wait to see onco today taken to room just a nurse who informed us that his bloods were lost and would take them again could we call back in 3hrs to see onco Eric said would she just call us with results .

When she called bloods ok for chemo Friday I asked her what about results of xray hadn't looked as yet so another phone call more spread but his psa is still going down Barry will understand that one lower psa but still spreading.

Julie it does get a bit scarry with the breathing and yip they can be so stubborn but we wouldn't change them for the world.hope you and Trevor are good.

Lyne liked the chocolate teapot quote.

Mo nice to hear from you still there helping everyone thankyou for just being you.

You are one strong lady.

Bri that was a good quote and very true.

Carol

ps Eric was touched to hear all the messages and sends best wishes to you all.

User
Posted 04 Jul 2014 at 19:49
Thats Eric had his Chemo today as I said the last post we didn't see onco so she was unaware of his infection and that he has been taking his heart spray during the night not very happy with him but he just wanted to reach the halfway mark with chemo.

Onco's registra spoke to him about the spread that showed up on xray booked in for scan so will no more in a few weeks Eric is fine when waiting for reults no point on worrying wont change anything.

Carol

 
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