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Simon Story Chapter 2

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

 
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