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Simon Story Chapter 2

User
Posted 06 Jan 2015 at 17:58

Good results Simon, hope mine are as good in Feb.

 

 

 

Chris.

User
Posted 06 Jan 2015 at 19:34

That's brilliant news Si. So what were the UFOs on your previous scan, any theories???

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

User
Posted 06 Jan 2015 at 19:40

Hi Lyn,

They was two new little mets in the Pelvis, but they promised to be good if i didn't zap them

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Jan 2015 at 20:14
Looking good Si and I have to say that you looked great on Saturday.

Assuming you will keep up the abbi while you ponder the best way forward with Jamie.

I have nearly finished baking ready for Thursday.

Xxx

Mo

User
Posted 06 Jan 2015 at 20:33

Good news Simon. Pleased for you.

Dave

User
Posted 06 Jan 2015 at 21:21
Fantastic news Si all you need now is for Cambridge to beat Man U and it will be a great start to the year for you!

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 06 Jan 2015 at 22:29

Brilliant blood results Si, we get ours on Fri. I still can't fathom how you have the new mets with such near perfect results. The film My Left Foot sprung to mind when you said there was something in your foot. Looking forward to seeing you and Mandy on Thur and the goodies of course.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Jan 2015 at 22:50
Great result Si

I will have a pint of whatever you're drinking

All the best

Roy

User
Posted 08 Jan 2015 at 21:29

Met Jamie tonight, and well you win some you lose some.

Zoladex argument i didn't win.

RT i did win

Denosumab changed from six monthly to monthly.

Bone scan in two weeks then we can discuss.

Radium is now available in Nottingham again, so lots of options again.

Lovely day today with Mo, Julie and Trevor and loads of dogs.

Si xx 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Jan 2015 at 21:45

Are you still taking Abby tabs?

User
Posted 08 Jan 2015 at 21:48

Hi Paul,

Yep stay on Abbi till the bone scan

How is your mother doing

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Jan 2015 at 22:02

She's slowly improving. Off down again tomorrow! Clocking some miles

User
Posted 08 Jan 2015 at 22:02

Sorry to read this Si as I know you didn't want to restart Zoladex , I have thought about this and I suspect Jamie has only done this because you covered his room with dog hairs.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Jan 2015 at 22:15
Si you know what they say, compromise is so much better than confrontation. I thought you might lose the zoladex battle but now you have a little bit more time to see what happens next.

I enjoyed our little outing to see Julie,Trevor and the dogs and to find Trevor looking pretty good after his recent trials and tribulations.

See you next week

Xxx

Mandy Mo

User
Posted 09 Jan 2015 at 20:04
Si

Pleased to hear your bloods are so good, that's a great sign. I think I agree with Jamie re the zolodex, it's pretty good stuff. As,long as the mets are watched carefully and jumped on if they grow then maybe it's a good idea to leave the RT for when and if needed.

Sounds like you all had a blast at Julie's

Lots of love

Allison xx

User
Posted 09 Jan 2015 at 22:09

Great blood results Si...fingers crossed for the bone scan results
Bri

User
Posted 11 Jan 2015 at 19:37

Bit of a long shot but has anybody gone from a six monthly Denosumab injection to a monthly one.

I had my first monthly one Thursday evening and from Saturday evening until mid afternoon today i have felt crap.

All of my stats are spot on, blood pressure 120/80 but from yesterday it went to 90/70 and heart rate 170 - 190.

All settled down now but i think i might give the 4 weekly injection a miss next time

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Jan 2015 at 20:26

Si can't you get hold of Jamie for an opinion...It may have just been an initial reaction to the change. If you can't get hold of Jamie what about the pcuk nurses.

Glad you are feeling a bit better though

Bri

User
Posted 11 Jan 2015 at 22:08

Si is the Denosumab similar to Zometa. Trevor has that 4 weekly . He had the low BP with the pneumonia I would take Bri's advice and get in touch with Jamie.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Jan 2015 at 10:55

Update of my crap week,

Saturday heart rate and BP started going nuts, Sunday it happened again so took Bri advice and rang hospital http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Monday morning.

They rang Jamie then i was called back:

Them, why did you not call 999

Me, didn't think i needed to bother anyone.

Them, your to come over now

Me, i feel fine now, so no thanks

Them, if you are not here in one hour we will send an ambulance to get you

Me, just getting my car keys http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So blood tests and ECG and a bollocking.

2am early hours of Tuesday morning it happens again heart racing at 180 took three hours to slow down, Ness gets angry i am ringing ambulance, me but last time it was higher just leave it.

Tuesday ring hospital mega bollocking now, well and truly on the naughty step http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Back to hospital for more bloods, ECG and a Echo thingy, back Wednesday to be fitted with a 24 hr monitor.then go back Thursday for appointment with a very nice Professor of Cardiology.

In the mean time heart rate keeps rising two or three times a day from 15 minutes too 4 hours.

Anyway more tests Thursday and meet the Heart man and it looks like i have medication induced Supraventricular tachycardia.

My 24 hour monitor results are back next Tuesday then Heart man and Jamie will discuss how best to proceed.

So not the week i was expecting but i have a nice bone scan to look forward to next week 

Si xx

   

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Jan 2015 at 11:37
Hi Si,

Hope everything gets better soon, I know how you feel. I'm in the cardiac unit on Monday to get my angioplasty done, can't come soon enough. I'm struggling a bit at the moment.

I know this is the last thing you need on top of everything you're dealing with.

Don't forget we've got an important event very soon that we have to be fit for.

Best Wishes,

Steve

User
Posted 16 Jan 2015 at 13:25
Si I have been waiting for you to post so I could tell you how worried I have been for you. I know I call you Si superman but even superheroes have off days especially when dealing with this horrible disease.I guess in the last two years there have been few as scary as this.

I know this has briefly happened to you before so now the game of hunt the guilty medication begins, especially when the only change in a long time has been dosage and timing. I can only imagine how frustrating this is for you especially when all your blood test results are near perfect.

Don't do anything strenuous over the weekend, wait patiently (hard to do I know) and see what Tuesday shows up. All I can tell you is that the monitor you had fitted is leading edge stuff so the analysis of data collected will give your fabulous medical team a really good idea of what is happening.

As always if you need any help at all just text and I will be there. I am planning to come over Thursday morning about 10 if that is o.k.

Xxx

Mandy Mo

User
Posted 16 Jan 2015 at 13:30

Si there are a few things that can get the heart rate going like that but seeing as you are on HT we can rule that out ;-)

mine rose to 150 recently....wonderful stuff that viagra :)

Lifes a bxxxh and you really dont need this. Do they think it is related to the monthly injection?

Here's hoping the heart man and Jamie can get things sorted and soon

Bri

User
Posted 16 Jan 2015 at 15:00

Oh no! Just to ssip you off more, Stan's heart failure was finally put down to stress on the heart caused by Supraventricular tachycardia, which was blamed on the chemo he had had. I don't know which chemo it was but apparently, heart damage was a known if rare side effect.

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

User
Posted 16 Jan 2015 at 17:38

Gosh, Si, did not want to hear this. It sounds as if you are getting the best treatment though there seems to be a not so subliminal message that if you have a problem get it sorted. So do not resist the need to call or go to the hospital if things suggest it. You know it makes sense!

Meanwhile rest I er the weekend and hope they get to the root of the problem and it settles down, sounds a bit scary!

Thinking of you and Ness!

User
Posted 16 Jan 2015 at 18:52

Many thanks for all for your comments and Lyn http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

I have been looking around at other treatments and the results on this small trial is right up my street.

Jamie will be getting a ear bashing at my next consultation

 

"There has been some surprising and unexpected news recently reported by John’s Hopkins Kimmel Cancer Center. Testosterone, which is believed to be a feeder of prostate cancer has been found to also suppress some advanced prostate cancers and also may reverse resistance the to the testosterone-blocking drugs (ADT) used to treat advanced prostate cancer.

The small study led by Samuel Denmeade, M.D. looked at just16 men with metastatic prostate cancer and so it is still very early for us to make any judgments about the efficacy of these findings for clinical use.

In the normal course of treatment when men are believed to have developed metastatic prostate cancer they are put on hormone suppressive treatment (ADT). Eventually these ADT drugs stop working, the cancer becomes resistant and despite a man being castrate the cancer again begins to progress. At this time men are usually switched to some of the newer ADT type drugs (Xtandi or Zytiga)

According to Denmeade the ADT drugs may make prostate cancer more aggressive over time by enabling prostate cancer cells to subvert attempts to block testosterone receptors. Many men on these drugs experience harsh side effects, including impotence, weight gain, muscle loss and intense fatigue.

“This really is the most lethal form of prostate cancer,” says Michael Schweizer, M.D., researcher at Fred Hutchinson Cancer Research Center and contributor to the study during his fellowship at Johns Hopkins. “It’s the one that’s the most resistant, and typically once people progress to this stage it’s when we start to worry that they’re at a much higher risk for dying from prostate cancer.”

This new study tested a novel approach, which was based on the idea that if prostate cancer cells were flooded with testosterone, the cells might be killed by the hormone shock. The cells also might react by making fewer receptors, which may make the prostate tumor cells again vulnerable to androgen deprivation therapy.

For the study, Denmeade and his colleagues enrolled the 16 men who had been receiving ADT for metastatic prostate cancer at Johns Hopkins. All had been treated with at least one type of ADT and then had rising levels of prostate specific antigen (PSA) and radiographic evidence their cancers were becoming resistant.

In the trial the men were given three 28-day cycles of an intramuscular injection of testosterone and two weeks of a chemotherapy drug called etoposide. Men who showed decreases in PSA levels after three cycles were continued on testosterone injections alone.

Of the 16, two did not complete the study: One died of pneumonia and sepsis due to the chemotherapy drug, etoposide and the other experienced prolonged erection, a disqualifying side effect of the testosterone.

Of the 14 men who remained in the trial, seven experienced a dip in their PSA levels of between 30 and 99 percent, an indication their cancers were stable or lessening in severity while 7 of the men showed no decrease in their PSA scores.

In addition, four of the seven men stayed on testosterone therapy for 12 to 24 months with continued low PSA levels. Of 10 men whose metastatic cancers could be measured with imaging scans, five experienced tumor shrinkage by more than half, including one man whose cancer completely disappeared.
“Surprisingly, we saw PSA reductions in all of 10 men, including four whose PSA didn’t change during the trial, who were given testosterone-blocking drugs after the testosterone treatment,” says Denmeade.

The study authors have suggested that these results strongly suggest that testosterone therapy has the potential to reverse the resistance that eventually develops to testosterone-blocking drugs like enzalutamide.

Three of the study participants have died since the study began in 2010; the rest are still alive.

During the cycles of etoposide, many of the men experienced the usual side effects of chemotherapy, including nausea, fatigue, hair loss, swelling and low blood counts. In men receiving only the testosterone injection, however, side effects were rare among the men and usually low grade.

Denmeade says that more studies are being planned at Johns Hopkins and other hospitals. “There has been a groundswell of interest in the idea of reversing resistance to androgen deprivation therapy. We have plenty of anecdotes and some evidence in this small study, but it’s important to test it in larger groups of patients,” he adds.

An important note:

Dr, Denmeade, warned that the timing of testosterone treatment used in his research is critical and difficult to determine, and says men should not try to self-medicate their cancers with testosterone supplements available over the counter. He pointed out that prior studies have shown that taking testosterone at the wrong time — particularly by men with symptoms of active cancer progression who have not yet received testosterone-blocking therapy — can make the cancer worse."

And before any of you lot get any bright ideas i am the one getting thrown off for prolonged erections http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

Sounds very promising

 

 

Edited by member 16 Jan 2015 at 18:54  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Jan 2015 at 20:09
Interesting ...if not almost logical.

I'm sure Lyn didn't mean to scare the pants off you ...just letting you know how important it is to get things like this checked out i.e. not telling 111 you did not want to make a fuss....bad Si

Xxx

User
Posted 16 Jan 2015 at 20:40

Si,

You had better be at Newark!

Let me tell you how much I have invested in meeting you and the gang again, you muppet!

I first booked the first hotel room for the initial date in December 2014, cost t me £26.00. No worries, I was looking forward to seeing you drink me under the table again.

That was cancelled.

So, I go to book another room for the new confirmed date in February 2015, easy to do. Yeah right!

Unfortunately I seem to av misread the date detail on my booking. Sckollob. I book the 25 January for a night, GREAT, a Sunday night, SUNDAY NIGHT, in NEWARK on my own!

Anyway eventually I do manage to book the right date for room. 7th Feb Premier Inn, a room.

So Si, Buddy, you better get your esra in gear and over there for several beers at Newark. Or you and me will have words.

Love to you and your family

Dave

 

PS: any help with prolonged erections would be okay to share if you feel the need?  ;-)

 

Total room cost to me so far £104.  PMSL

Edited by member 16 Jan 2015 at 20:43  | Reason: Not specified

User
Posted 16 Jan 2015 at 20:40

I saw that report SI, it makes a kind of sense.

Wonder if they will start actual trials. Sorry you've been through the mill again Si, hoping they will sort this out for you mate.

Lots of love
Allison xxx

User
Posted 16 Jan 2015 at 20:47
Thinking of you as always Si whilst you go through another confusing an unexplained situation. Have as restful weekend as you can, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 16 Jan 2015 at 22:20
love Dave's post ...just so you know Dave I have also booked a non refundable room if Si is momentarily incapacitated I will do my best to drink you under the table...but of course Si superman will be there.

Course I am far too lady like to comment on such matters as a permanent erection other than 50 shades of grey the movie is out on Monday

Xxx

User
Posted 16 Jan 2015 at 23:33

Anyone wanting to get in line for the man with the prolonged erection will have to queue behind me :-#

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

User
Posted 17 Jan 2015 at 09:57

That poor bloke it really must have been a yes get in, oh no! moment when the erection he had possibly been waiting some time for disqualified him from the trial.

Lyn I'm shocked ;-)

Bri

User
Posted 17 Jan 2015 at 12:56

LYN!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


You're a very naughty girl.

(I love it!)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

 

User
Posted 17 Jan 2015 at 15:34

HOLY KAMOLI What has been going on.

Si is clogging up A&E and Lyn is first in line in a very long queue. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Trevor is exactly the same for phoning an ambulance, he didn't want me to ring when he had the pneumonia but sometimes it is needed so stop arguing with Ness .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I just had a terrible thought it could be the Fosters OHHHHHHHHHHHHH NOOOOOOOOOOOOOOOOOO.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Jan 2015 at 22:27

Originally Posted by: Online Community Member

Anyone wanting to get in line for the man with the prolonged erection will have to queue behind me :-#

 

Totally misunderstood your post Lynne.  Had an image, the wrong image. lol.  http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

 

x

Edited by member 18 Jan 2015 at 10:39  | Reason: Not specified

User
Posted 23 Jan 2015 at 14:32

Hi All, time for another update,

After my medication induced Supraventricular tachycardia two weeks ago all my stats went back to normal yesterday, no more problems and I feel good again, now we need to find out the bugger that set it off.

Bone scan today, was feeling a little bit apprehensive after the two new mets appeared last time, but everything is good no progression.

Good old Jamie, belt and braces, i finished my bone scan to find out that he had also booked a SPECT-CT scan, never heard of this one before but it was very nice.

So three more months of Abbi, will soon be hitting the 2 year mark on this drug.

Looking forward to the meet up at Newark, hope you have been practicing Dave http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Best Wishes to all

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Jan 2015 at 15:08

Who here ever imagined that the words "SPECT-CT, it was very nice" could ever seem like a normal thing to say or read? Pleased that you have another 3 months stability Si.

CB, there's no HT inhibiting your imagination then?

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

User
Posted 23 Jan 2015 at 15:14

 

 

"CB, there's no HT inhibiting your imagination then?"

 

Edited by member 23 Jan 2015 at 16:15  | Reason: Not specified

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Jan 2015 at 17:29
Si, some great news to head into the weekend then, I am beginning to worry about your slightly S&M approach to scans they are meant to be tolerated not enjoyed like a bloody massage or something had you been slurping the Fosters before you went in??

Not sure what the HT imaginary inhibitions are all about, I am afraid that one has gone straight over my head. I am simply not as sharp as I used to be. I think the one hour one to one I had with the Physical trainer at the gym yesterday has finished me off, well that and this no alcohol school nights mallarky ... OMG it is Friday yay hooray glass of wine time and no more gym until Sunday afternoon.

All looking good for Newark, just remind me to point out to the lovely waitress there that Dave does not like eating off a roof slate so can he have an ordinary one !!

It was great to see you looking like your normal self again yesterday

xxxx

Mandy Mo

User
Posted 23 Jan 2015 at 17:51

CB = Countryboy

Ref his last comment about my comment. It's more complicated if you have started the weekend red Mo.

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

User
Posted 23 Jan 2015 at 23:06

Great news Si, the diet is working!

User
Posted 24 Jan 2015 at 12:22

Really good news Si, I am so happy for you. I have looked up this new scan on the internet but I couldn't find it. The only reference to a SPECT-ST was

S-SI'S

P-PRETTY

E-ELECTRIFYING

C-COME ON EVERYBODY

T-TRY IT 

_

C- COOL DUDE

T- TYPE OF SCAN

Was that the one ?

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Jan 2015 at 21:44
This morning I typed up this really cool answerand pressed the tab to post it, it explained away the reason I missed CBs edited comment about his vison of Lyn, where the Holy Grail really is, the Meaning of Life etc. Then you never guess what happened ... got it in one, the website crashed and my darkest wittiest moment was lost forever ...poop

xx

Mandy Mo

User
Posted 25 Jan 2015 at 10:58

Great scan results Si. Hope all goes well when you meet Jamie in a couple of weeks

Bri

User
Posted 03 Feb 2015 at 12:41
Wow, Si, just been catching up in all the posts. What a roller coaster, but great news all is still going well and that you had a great Christmas. Good on you for continuing to kick ass!

My Dad is off to see Jamie today (or whoever it is that's there - sometimes Jamie, sometimes one of his registrars but they've all been nice). Hope he gets some positive news too!

Belated happy new year and enjoy your Feb meet-up.

X

User
Posted 03 Feb 2015 at 13:47

Hi Debbie,

Great to hear from you, and a happy new year to you and your family.

Bad news im afraid Jamie is on holiday this week so i guess your dad will be seeing one of the registrars, so glad to see he is still doing well and i hope today is good news for him, please let me know how he gets on.

Things have moved on a bit my end and not all good i am afraid, just working on a new plan and to get my head round things.

If your dad or yourself is around on Saturday you are more the welcome to join us, just a nice lunch with some great people and a couple of beers http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

All my best

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 09 Feb 2015 at 10:52

Update of the last 3 weeks,

After the medication induced heart problem my appointment with Jamie was brought forward two weeks, after consulting two other oncologists they placed the blame on abiraterone and the plan was to stop these and start on Cabaztaxel straight away.

Didn't really fancy that so after a little debate Jamie agreed that i could stay on Abbi but i had to promise if my heart rate hit 150 straight to hospital. Well that was a Thursday  and by Saturday it all went tits up again so like a good boy i stayed at home but stopped taking abbi.

Rang the nurses Monday who contacted Jamie, my journey of 18 months with abbi is now over. So as Jamie was on holiday last week i will be seeing him this Thursday. I see the heart man at 10am then back at 8pm for the big discussion.

Not really sure what route to take next, not sure i fancy chemo again apparently its not the right time for Radium 223 but i will find out why.

So for the first time in over two years i am on no treatment and i am quite enjoying it, so unless Jamie comes up with something out the box that really appeals to me i think for the time being i will stay as i am.

Bloods are still good, PSA & testosterone all undetectable, bone scan showed no progression and the SPECT CT scan the report was lost but now found and i will get the results of that Thursday.

Si   

Don't deny the diagnosis; try to defy the verdict
User
Posted 09 Feb 2015 at 11:12

Hello again Si,

I am sorry that you now have to forget about Abiraterone.
Like every other drug, it can work well for years for some, yet be ineffective or harmful to some other guys.in a relaltively short time.

I have seen cases this like before where the heart has been affected.

Fortunately, your results remain excellent. I hope the missing (now found) report shows good news too, and I wish you the very best with your big appointment with Jamie.

Looking forward to a positive post from you on Friday!


All the best,


George

User
Posted 09 Feb 2015 at 12:38
Si

your Jamie never does anything predictable so I wouldn't show any surprise at what he comes up with no matter how radical or crazy it sounds. I did think that the peroni and chips diet may not actually be top of the list and it seemed to have a slighty debilitating effect on you this weekend ...maybe we got the dosage wrong? not that you could tell from that stonking Sunday lunch.

Seriously though the last 2 months have given you a harsh taste of things not going to plan and I know just how much that rattled your cage, so now you need to move on and get ready for whatever comes next. Knowing you there will be a short spell of FFS, WTF and other utterances not everyone wants or needs to understand and then you will just get on with things in your own way as you almost certainly have had to all your life. You are a true inspiration to a lot of people here (even if your responses seem to be from a very select group of followers, there are many who read and say nothing) You have been the most incredble friend to me as you were for Mick from the first day of knowing you, your family are like my own whenever you need me I will most definitely be there for you with a peroni and chips take away if necessary.

I will be doing the proverbial beads for you on Thursday and as your appointment is late probably into Friday as well.

xxxx

Mo

 
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