Chemotherapy Docetaxel use, for locally extensive cancer after just starting ADT Decapeptyl.

User

Posted 20 May 2019 at 17:21

Status:

In November 2018 I was diagnosed with Prostate Cancer:

Gleason 4+4. T3b N1 M0 - Aged 55.

Background. (May 2019):

I have been on ADT (Decapeptyl) treatment for just over over 5 months (2 injections so far) and my PSA has gone down from 67 to 0.95

Based on findings from Stampede trial it was suggested to me that I should start chemotherapy early (6 sessions in total, 3 weeks apart), combined with continued ADT hormone treatment (every 3 months) and then look at pelvic IMRT Radiotherapy later on this year.

Subject to satisfactory blood tests, I am now due to have my 2nd Docetaxel chemotherapy session tomorrow (21st May). So far (knock wood!) the side effects have not been too bad, but I appreciate it is very early days.

The questions I have are:

A) Has anyone already been on this same journey as I am on with the same diagnosis and if so how has it gone?

B) Where can I enter the details of my journey so that others after me can benefit from my experience. (Ideally I would like to document exactly which drugs, tablets and injections etc I have been on, the timeline and the side effects and importantly how it is gone).

I suppose I should check with my Oncologist what database they use to see statistics on everyone’s ‘Journey’, when patients are NOT part of an ongoing well documented trial, but thought someone out there may know?

Thanks

PS. What seems very clearly to me, is that there are many different treatment journeys out there. This will depend on the individuals health, their diagnosis, their age, findings from clinical trials, NICE guidance, costs, the experience and special interest areas of the oncologist etc. But I am guessing that we all want to live as long as possible and we all want the treatment path to avoid too many bumps on-route.!

User

Posted 20 May 2019 at 17:56

Hi, you are correct. Everyone is different and consequently treatment paths differ greatly. It absolutely depends on your individual circumstances.

Therefore any treatment database to refer to (if available) is useless as a guide because of this. Trust your oncologist. That said, documenting your journey on this board can be helpful to others.

You are not alone!

Best regards

User

Posted 20 May 2019 at 17:58

hi.

I can answer 1 part.

keep journey in.

edit profile. bio and latest news.

. ie click.on profile can be extremely informative.

see high posting members. a wealth of info.

mine needs tidying. as has my brothers info also.

you can cut/ paste text to save rekeying from a master doc etc.

Gordon

User

Posted 20 May 2019 at 18:58

Hi,

Although diagnosed nearly three years ago our treatment is similar ie Decapeptyl & Docetaxel. A look at my profile will tell you more but as you have already noticed none of us are the same.

Dave

User

Posted 20 May 2019 at 23:25

Having a similar journey. Dx August 2018 presenting PSA of 5806. Started Degarelix hormone treatment before being switched to 3 monthly Prostap injections. Had six sessions of Docetaxel chemo, finished January. PSA in March down to 6.6. Side effects from chemo seemed to kick in after 3rd session but I only really experienced hair thinning and finger/toenails problems (peripheral neuropathy). Most nails affected, some still ready to come off. Usual tiredness on occasion. Important whilst undergoing chemo, if any infection or cold/flu symptoms arise need to get straight on to your hospital as your white blood count would be compromised.

I didn’t bother on one occasion and got a hell of a rollicking from the nurses.

Good luck

David

User

Posted 03 Jul 2019 at 15:41

Hi Ryman

I have been on generally the same path, which for me started in August 2017. Based on the MRI, we were hoping for a cure so without too much thought I went for an initial robotic laparoscopic prostatectomy. I just wanted the damn thing gone! Unfortunately, however, the MRI wasn't telling the whole story and, in the event, my lymph system had been infected (see my profile). Post op and post extensive biopsy I was classified as pT3b N1 R0 Gleason 4+5+3. I started Decapeptyl 3 monthly on 15 November 2017 and then commenced Doxetaxel on 8 February 2018. The chemo went as well it could have done and during the less infectious periods we took ourselves off to the South of France after the second infusion and to Madrid after the fifth infusion - by this time I was feeling weak and spent more time than usual lying down in the hotel and less time wandering around the old town. Having said that, my wife enjoyed the change and by sleeping in the afternoon, gave her more opportunity to damage our credit card! Chemo stopped in June 2018 so just over a year ago. I have now moved on to 6 monthly decapeptyl. My PSA is tested every 3 months and has remained at < 0.05 December 2017 (last test end June 2019).

I did have a bone density scan in May 2018 and was found to be on the borderline between osteopaenia (thin bones) and osteoporosis (weak bones) with a T score of between -1.9 and 2.5. To try to ameliorate this I take 2 x Calci chews daily and have an annual infusion of zoletronic acid.

In general health, I fell fine for 73 years old. Although I do think I will very get used to the sword of Damocles hanging over me (and over most people who contribute on the web site!!). No one has been able to help me with this although a doctor friend, who is a cardiologist in Vancouver told me, "Its your new reality so better get used to it". I'm trying but it is hard sometimes.

Happy to chat further if it helps.

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User

Posted 20 May 2019 at 17:56

Hi, you are correct. Everyone is different and consequently treatment paths differ greatly. It absolutely depends on your individual circumstances.

Therefore any treatment database to refer to (if available) is useless as a guide because of this. Trust your oncologist. That said, documenting your journey on this board can be helpful to others.

You are not alone!

Best regards

User

Posted 20 May 2019 at 17:58

hi.

I can answer 1 part.

keep journey in.

edit profile. bio and latest news.

. ie click.on profile can be extremely informative.

see high posting members. a wealth of info.

mine needs tidying. as has my brothers info also.

you can cut/ paste text to save rekeying from a master doc etc.

Gordon

User

Posted 20 May 2019 at 18:58

Hi,

Although diagnosed nearly three years ago our treatment is similar ie Decapeptyl & Docetaxel. A look at my profile will tell you more but as you have already noticed none of us are the same.

Dave

User

Posted 20 May 2019 at 23:25

I didn’t bother on one occasion and got a hell of a rollicking from the nurses.

Good luck

David

User

Posted 21 May 2019 at 08:35

Hi Ryman

I'm a couple of months ahead of you following diagnosis last August.

See my profile, I've gone down the prostap, docataxel and EBRT route and currently feeling great. The main difference in the last 12 months is I'm definitely weaker than a year ago. I did a days gardening on Saturday and a year ago I was lifting heavy bags of soil and mushroom compost with consumate ease, now I struggle to lift a heavy bag. the muscle definition in my biceps has vanished.

Thought about lifting weights but I've read on here that weightlifting can generate testosterone which feeds the cancer. Going to look more like Charles Hawtrey than Daniel Craig with another year on prostap.

John

User

Posted 21 May 2019 at 09:03

Jasper, lifting weights is not going to affect your cancer unless perhaps you are training for the world Iron man championship and even then, it is unlikely

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

User

Posted 21 May 2019 at 09:22

Originally Posted by: Online Community Member

Thought about lifting weights but I've read on here that weightlifting can generate testosterone which feeds the cancer.

That's interesting, and one I hadn't heard. Is this weight lifting in particular, or any exercise? Jogging and weight lifting are normally quoted as ideal exercise to combat calcium and muscle loss on HT.
I started doing pull-ups, but pulled a tendon in my elbow after a couple of months and have been waiting for it to heal for last 6 months before resuming. However, I've cranked up my cycling to an average of 3500kCals/month (not to mention that I really enjoy it).

Indeed, there is increasing research showing exercise is very effective at slowing some cancers including prostate. There's been enough evidence that exercise on watchful waiting is doubling the length of time before intervention is required, that a phase II trial is (or maybe has) started on this. There's also increasing evidence that exercise during HT increases the effect of the HT on slowing cancer progression.

User

Posted 21 May 2019 at 10:31

Jasper

My oncologist specifically told me to do weight bearing, resistance training.

Ulsterman

User

Posted 21 May 2019 at 11:05

Okay thanks, Lyn if I don't do something it won't be an Ironman contest but entry in the 2019 Mr Puniverse competition.☹️

User

Posted 24 May 2019 at 13:13

Hi Ryman,

Likewise I was dx with T3bM1NO four years ago 49yo. The start of my treatment was the same Decapepyl and then early chemo, about 6 months after dx. Chemo went well with minimal SE and kept working and busy house throughout. You can see on profile. My PSA was down to 3 from 396 at the end of the treatment. This worked well for over a year then PSA started to rise which started other treatments. Only advise on chemo is that SE usually start at 3/4 round and I found myself more tired than anything else. I just tried keeping active, within reason, and took it very easy when my body seemed to tell me.

Good luck on treatment.

Steven

User

Posted 03 Jul 2019 at 15:41

Hi Ryman

Happy to chat further if it helps.

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