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cancer gone to bone

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User
Posted 07 Jun 2015 at 10:28
Hi BR
Sounds like your Oncologist is comfortable with your current treatment especially if he is happy for you to go visit your grandchildren in Canada. Make sure you check out health care reciprocity and travel insurance just in case. We found it prohibitively expensive to get full travel cover but for Europe or countries with any reciprocity we took the chance.
When you go onto Stampede trials you will have the option randomly selected by a computer. You may get additional and potentially harder hitting treatment or you may just get control. That gets you more regular check ups.
The findings from early trials are suggesting that in a case like yours the gold standard treatment will be HT + chemo asap and possibly followed by RT ..check out Irun's profile as Kev seems to have many similarities to you. I would say look at siness too but his profile is still reporting an error which the IT department seem unable to fix.
Hope to see you soon
Best wishes
Xx
Mo
User
Posted 08 Jun 2015 at 11:46

Hi Bladerunner

I'm the same with spread to left hip bone. Im 5 months now into stampede group J which includes abiterone + enzalutamide. My PSA is now down from 235 in January to .06 so somethings working.

Trouble with going stampede is you might get the control group which is just HT but then if you don't like it you can come off the trial.

There seems to be a lot of new thinking coming out of the earlier stampede trials about starting chemo earlier and RT so I'd certainly ask whats latest offerings to hit the cancer earlier.

Im still running but I'm not keeping my paces due to tummy upsets and loss of stamina.

I also go away to France for long periods but keep check on things there with blood tests and phone calls to stampede nurses.

All the very best and enjoy the trip to Canada

User
Posted 08 Jun 2015 at 16:40

seems the result from stampede trial has not yet been adopted by NHS, so going n the trial will be my best outlook at moment

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 12 Jun 2015 at 05:15

strange day yesterday 11th, developed a lump where the jab was done also a rash, spent most of the day feeling like  I was covered in ants constantly itching


went to see my GP nice bloke gave me some antibiotics and allergy tablets to see if they help


also a tick box form on depression and anxiety where you add up the score at the end seems I am not depressed just very anxious, no suprise their then


going back next week as he wants to have a chat re how I feel so am going to make a list cause if I dont prob will not tell him owt


nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 12 Jun 2015 at 12:21

had phone call to day to attend Doncaster hospital 23rd june to find out what part of stampede trial I will be offered, it will be a big relief to get this sorted.

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 12 Jun 2015 at 14:42
Hi BR
Hope the trial selection goes well for you even the control arm gives you closer and more frequent monitoring.
As fo the lump amd rash from the zoladex implant are you sure the lump isn't just the implant it goes just into the first layer of subcutaneous tissue it is a little bit larger than a standard painkiller capsule you can sometimes feel it if you feel around the area it was implanted.
A rash is quite a common side effect but should only last for a week at most. If it is still troublesome I would ring the clinical nurse specalist in the urology department.
Best wishes for 23rd.
Xx
Mo
User
Posted 12 Jun 2015 at 15:55

Hello Bladerunner
Best of luck with meeting in Doncastor.
Don't forget whichever group you get if it doesn't suit you can pull out.
I'm on Stampede J since a to January. I think I wanted the Rt group but got the a I and Enzo tablets but I'm happy to continue because of the close monitoring and number of blood readings they take ie everything is monitored.
My PSA is down from 235 in January to 0.07 now

All the best

Paul

User
Posted 12 Jun 2015 at 16:01

BR
Oh by the way is that jab you refer to the HT prostap cos I had my second 3 monthly jab and had a nasty lump there for about 2 weeks followed by a feeling across my stomach as if a horse had kicked me, Onco said its nothing to be concerned about. I guess it's just the drug dissipating into the body.

Cheers
Paul

User
Posted 22 Jun 2015 at 19:00
Had second jab today
Because of reation to prostap have been given Zoladex
Will have to see what side effects come with this

Edited by member 22 Jun 2015 at 19:02  | Reason: Not specified

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 23 Jun 2015 at 15:46

just back from my visit with the onco, had a BIG spanner chucked in the works, apart from going on stampede trial I have been ofeed the docetaxel treatment from the stampede trial


 


after discussing with family I think it will be the docetaxel and HT which wil start after we have had our holidays in august


never had to make such a tough choice, but its between what has been proven and what may be


 


nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 24 Jun 2015 at 10:09
Nidge
I did try to post yesterday but the French WiFi was giving me the run around.

It is a good you have been offered this outside of Stampede, it shows to me that the results that have just been published have got through and are being used by the more advanced thinking Oncologists.
At Leicester the amazing guest Onco did say that this was the best news in a long time for anyone with spread and possibly even for some men with locally advanced PCa.
He also said that in the year or so to come the take up may cause some admin problems with funding and balance between budgets of Urology and Oncology departments as well as pressure on the chemo suites. So it is good that you are getting started in August and have already been signed up so to speak.

Best wishes
xx
Mo
User
Posted 28 Jun 2015 at 15:59

well changed my hormone treatment from prostap to zoladex, must say how much better I feel with zoladex, my running is easier dont feel like my lungs are going to bust, and just feel better altogether


nidge

Edited by member 28 Jun 2015 at 16:23  | Reason: Not specified

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 28 Jun 2015 at 19:28

Glad the change of meds is proving beneficial. Run long and prosper nidge!!

We can't control the winds - but we can adjust our sails
 
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