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When will chemo start?

User
Posted 21 Feb 2018 at 09:34
Hi all,

Just wondering how long after diagnosis did chemo start? The urologist said dad would be having early chemo, he was diagnosed stage 4 Gleason 8 nearly 2 weeks ago and we are wondering how long before the chemo begins?

Thank you.

Miffy
User
Posted 22 Feb 2018 at 15:26

Hello Miffy.

Would it be possible to contact the urologists secretary and ask?

Waiting around is always the worst part eh?

Give the hospital a ring. You might get an answer fairly quickly from them, especially one that is relevant specifically to your dad.

We can't control the winds - but we can adjust our sails
User
Posted 22 Feb 2018 at 17:01

Hi Miffy,

This is a brief idea of my early timeline 2016:

Initial bone scan results showing metastasis same day as biopsy procedure - 27th July.
Biopsy results: 2nd August.
CT scan the following week.
MRI scan - 14th August
First oncology appointment to collate results and discuss treatment - 6th September
Hormone therapy started - 9th September
Chemotherapy started - 26th October.

All of this happened pretty much seamlessly, without any need for me to chase anything up.

Hope this helps

Dave

Edited by member 22 Feb 2018 at 18:13  | Reason: Not specified

User
Posted 22 Feb 2018 at 21:14

From my own experience and I’m pretty sure as the results of STAMPEDE, the idea is to start chemotherapy soon after hormone therapy has started rather than an “earlier than before” point somewhere down the line.

Dave

User
Posted 22 Feb 2018 at 21:57
I think the aim is to start the chemo ideally between 1-3 months after the hormone therapy has started. My partner started it six weeks after he started HT. His oncologist said that was the best time.

Should just say that he was diagnosed beginning of November, sent for bone scan and CT they showed spread to shoulder, spine and hip, put on HT end of November, month of tablets then implant. Started chemo 30th January.

Edited by member 22 Feb 2018 at 22:10  | Reason: Not specified

User
Posted 22 Feb 2018 at 22:11

I think I was told it should start no later than 14 weeks after the start of HT.

User
Posted 23 Feb 2018 at 19:24
I started hormone treatment mid May last year and was scheduled for chemo on 9th August but managed to get Abiraterone instead of chemo so never went down the chemo route. I guess that will come at the end now
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User
Posted 22 Feb 2018 at 15:26

Hello Miffy.

Would it be possible to contact the urologists secretary and ask?

Waiting around is always the worst part eh?

Give the hospital a ring. You might get an answer fairly quickly from them, especially one that is relevant specifically to your dad.

We can't control the winds - but we can adjust our sails
User
Posted 22 Feb 2018 at 17:01

Hi Miffy,

This is a brief idea of my early timeline 2016:

Initial bone scan results showing metastasis same day as biopsy procedure - 27th July.
Biopsy results: 2nd August.
CT scan the following week.
MRI scan - 14th August
First oncology appointment to collate results and discuss treatment - 6th September
Hormone therapy started - 9th September
Chemotherapy started - 26th October.

All of this happened pretty much seamlessly, without any need for me to chase anything up.

Hope this helps

Dave

Edited by member 22 Feb 2018 at 18:13  | Reason: Not specified

User
Posted 22 Feb 2018 at 18:13

Early chemo doesn't mean it will be given really quickly after diagnosis ... It means that chemo is being given before the man is considered to be terminally ill. In the past chemo was only given to men who had run out of other treatment options so 'early' means 'earlier than we used to'

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

User
Posted 22 Feb 2018 at 21:14

From my own experience and I’m pretty sure as the results of STAMPEDE, the idea is to start chemotherapy soon after hormone therapy has started rather than an “earlier than before” point somewhere down the line.

Dave

User
Posted 22 Feb 2018 at 21:57
I think the aim is to start the chemo ideally between 1-3 months after the hormone therapy has started. My partner started it six weeks after he started HT. His oncologist said that was the best time.

Should just say that he was diagnosed beginning of November, sent for bone scan and CT they showed spread to shoulder, spine and hip, put on HT end of November, month of tablets then implant. Started chemo 30th January.

Edited by member 22 Feb 2018 at 22:10  | Reason: Not specified

User
Posted 22 Feb 2018 at 22:11

I think I was told it should start no later than 14 weeks after the start of HT.

User
Posted 22 Feb 2018 at 23:15

Thanks everyone, this has been very helpful. Although dad was properly diagnosed 2 weeks ago, he had his very first appointment back in December. The urologist said because his psa was so high and he could feel the prostate he started him on bicalutamide straight away. Decapeptyl injection followed and in the mean time the mri, ct and bone scans took place as well as the biopsy.

His first decapeptyl was 6 weeks ago now. So really he should know by the time he gets his next injection when the chemo should be starting? I'm assuming they like to see how well the hormone therapy is working before starting it?

Miffy
User
Posted 22 Feb 2018 at 23:23
What I gathered at the time was a sooner the better kind of approach with chemo but I thought best to come on and ask as we haven't heard anything just yet. The urologist seemed pretty keen that this is the way to go so all we can do is hope.
Miffy
User
Posted 23 Feb 2018 at 09:32

I’ll dig out my notes and let you know for sure later, but although my chemotherapy treatment started at the end of the October I knew well in advance of that the dates and times of all my cycles. Maybe it was that the urologists (I saw two) only dealt with the actual diagnosis and ordering scans. After that all appointments were at the West of Scotland Cancer Centre and I haven’t seen a urologist since.

If your dad has been give a specialist nurse to contact she might be able to throw some light on it. Or his consultants secretary - that is one of the reasons they are there. Don’t be nervous about contacting them - you’ll be surprised how helpful they are. Don’t just hope for the best - the help and info will be there.

Dave

User
Posted 23 Feb 2018 at 19:24
I started hormone treatment mid May last year and was scheduled for chemo on 9th August but managed to get Abiraterone instead of chemo so never went down the chemo route. I guess that will come at the end now
User
Posted 23 Feb 2018 at 22:08

As promised earlier Miffy I’ve consulted the notes taken at the first appointments.
First oncologist appointment was 6th Sept. 2016. My daughter took notes at the time so the info here is correct and not something I may have remembered. It was decided that I should start hormone therapy right away and when that was established to start chemotherapy in around six weeks. I started a three week course of Bicalutomide 9th Sept. with my first Decapeptyl jab 16th Sept. Next clinic appointment on 25th Sept was when I signed chemotherapy consent form with a view to starting 1st Nov - it in fact started 26th October 2016

Hope this info helps

Dave

User
Posted 24 Feb 2018 at 01:11
Originally Posted by: Online Community Member

As promised earlier Miffy I’ve consulted the notes taken at the first appointments.
First oncologist appointment was 6th Sept. 2016. My daughter took notes at the time so the info here is correct and not something I may have remembered. It was decided that I should start hormone therapy right away and when that was established to start chemotherapy in around six weeks. I started a three week course of Bicalutomide 9th Sept. with my first Decapeptyl jab 16th Sept. Next clinic appointment on 25th Sept was when I signed chemotherapy consent form with a view to starting 1st Nov - it in fact started 26th October 2016

Hope this info helps

Dave

Hi Dave,

Thanks so much for that. Everything seemed to go pretty quickly for you which is good! How many rounds of chemo did you have and have you had any more since?

Miffy
User
Posted 24 Feb 2018 at 10:12

Six cycles, three weeks apart. Each one was preceded by a blood test for PSA and to make sure my bloods showed I was ok for the next cycle with a medical checkup the day before. No need for further treatment at the moment, other than lifelong Decapeptyl.

I thought you might be interested how my PSA was affected once treatment started. Initially it was 67. Three weeks after first HT jab it was 10. The following ones were all during chemotherapy treatment - 7.6; 6.9; 4.2; 2.4; 0.8; Then once the cycles finished it was 0.4. All since then have been <0.I with the last three described as undetectable.

Dave

User
Posted 24 Feb 2018 at 10:56
Originally Posted by: Online Community Member

Six cycles, three weeks apart. Each one was preceded by a blood test for PSA and to make sure my bloods showed I was ok for the next cycle with a medical checkup the day before. No need for further treatment at the moment, other than lifelong Decapeptyl.

I thought you might be interested how my PSA was affected once treatment started. Initially it was 67. Three weeks after first HT jab it was 10. The following ones were all during chemotherapy treatment - 7.6; 6.9; 4.2; 2.4; 0.8; Then once the cycles finished it was 0.4. All since then have been <0.I with the last three described as undetectable.

Dave

Thank you so much for all that info it's definitely reassuring. I know everyone is different but that is a great response so hopefully dad's is as good. If the psa was to rise again (fingers crossed it doesn't) what's the next step? Did they tell you this? Would it be more chemo or another route? I'm assuming you coped well with the treatment. It's so good to be able to ask these questions to someone who has been through it. I really appreciate it.

Miffy
User
Posted 24 Feb 2018 at 13:23

The next step is going to be discussed when there is a need for it.

I coped very well with the chemotherapy. Got some side effects that were unpleasant but not debilitating - nothing serious. The main thing to watch out for is the risk of infections during the periods of low white blood cell count. I had no issues with that but some can get quite poorly. Your dad will be given advice and a 24 hour call number in case of any issues. You are right in that everyone is different but the nurses at the MacMillan Day Unit, where I had the chemotherapy, reckoned that most men sail through it.

Meantime, as I have been told by two separate doctors and my consultant, all at the cancer centre, that they are keeping an eye on everything that needs to be watched and that I should try and forget about it and just enjoy life. I can honestly say that I am enjoying life - but forgetting about having cancer is a bit of a tall order, although I have reached a stage where I don’t actively worry about it. I hope your dad, you and your family get to that stage in the not too distant future.

Dave

 
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