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Confused: locally advanced/stampede trial/but not chemo

User
Posted 29 Jun 2018 at 18:03

Hello and all the very best to everyone. I'm hoping for some thoughts on my husband's treatment as I'm a little confused. He's 52, recently diagnosed with a PSA of 50+, clear bone scan but MRI showing spread to both sides of pelvic lymph nodes. He started hormone medication today. I've done a bit of reading (often a dangerous thing) and came across the stampede trial which seemed to fit his case - high risk with some spread - and that suggested hormone plus early chemo with docataxel was beneficial. So we thought it would probably be that with may be radiotherapy down the line. However, initial soundings today suggest a hormone therapy and CT scan then radiotherapy. Any thoughts would be helpful from those more in the know, thank you.

User
Posted 29 Jun 2018 at 21:02

Hello blueskiesrule, sorry you and your husband are having to deal with this disease. You are in the right place for help and information. I thought the “standard” protocol was now early docetaxel when their was spread of disease.


Perhaps some oncologists only apply this when there is evidence of spread beyond local lymph nodes.


I would ask if his cancer is potentially curable with radiotherapy,


I am sure others more knowledgeable than I am will chip in.


This discussion here is about someone on docetaxel where the cancer has spread to seminal vesicles.


Best wishes, Ido4


 

Edited by member 29 Jun 2018 at 21:03  | Reason: Not specified

User
Posted 30 Jun 2018 at 01:39

Have you seen an Oncologist?  My OH was diagnosed by a Urologist and he started him immediately on HT and it was only when he saw the Oncologist a couple of months later that she started him on the chemotherapy, it is usually started a month after the start of the HT, she said it had to be within the first three months of the start of the HT so the two month start was OK.


The Hormone Therapy is the main treatment but they have found that early chemo can sometimes help it work for longer.


It's a lot to take in, my OH has spread to shoulders, spine and hip so radiotherapy was not considered. He started HT at the end of November, his PSA was 64, by January it had dropped to 1, end of April it was 0.27, next PSA test is August.


I have also been reading up on it and have found just reading the posts on this forum have helped me come to terms with everything and helped me to know what questions to ask at the hospital.


I am sure you will get more replies from more knowledgeable people but it can be a bit quiet on here at weekends.

Edited by member 30 Jun 2018 at 01:44  | Reason: Not specified

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User
Posted 29 Jun 2018 at 21:02

Hello blueskiesrule, sorry you and your husband are having to deal with this disease. You are in the right place for help and information. I thought the “standard” protocol was now early docetaxel when their was spread of disease.


Perhaps some oncologists only apply this when there is evidence of spread beyond local lymph nodes.


I would ask if his cancer is potentially curable with radiotherapy,


I am sure others more knowledgeable than I am will chip in.


This discussion here is about someone on docetaxel where the cancer has spread to seminal vesicles.


Best wishes, Ido4


 

Edited by member 29 Jun 2018 at 21:03  | Reason: Not specified

User
Posted 30 Jun 2018 at 01:39

Have you seen an Oncologist?  My OH was diagnosed by a Urologist and he started him immediately on HT and it was only when he saw the Oncologist a couple of months later that she started him on the chemotherapy, it is usually started a month after the start of the HT, she said it had to be within the first three months of the start of the HT so the two month start was OK.


The Hormone Therapy is the main treatment but they have found that early chemo can sometimes help it work for longer.


It's a lot to take in, my OH has spread to shoulders, spine and hip so radiotherapy was not considered. He started HT at the end of November, his PSA was 64, by January it had dropped to 1, end of April it was 0.27, next PSA test is August.


I have also been reading up on it and have found just reading the posts on this forum have helped me come to terms with everything and helped me to know what questions to ask at the hospital.


I am sure you will get more replies from more knowledgeable people but it can be a bit quiet on here at weekends.

Edited by member 30 Jun 2018 at 01:44  | Reason: Not specified

User
Posted 30 Jun 2018 at 12:05

Hi Kita


my OH was diagnosed end of march this year his PSA was 26.3 because it had spread outside of prostate he was offered HT with early chemo (docetaxel ). His PSA dropped to 8.2 after a month of HT and just before 2nd chemo on 20/6 his PSA was 0.5


He is also on the Stampede trial.


Thanks


Kazzy

Edited by member 30 Jun 2018 at 12:06  | Reason: Added name

User
Posted 30 Jun 2018 at 18:48
Thank you so much all, it's reassuring to share with you. And I have found reading other posts informative and helpful (although very sad) to know were not alone. Also thank you Kita for mentioning when your partner saw the oncologist - so far we have only spoken to the urologist and the McMillan link nurse. No one has mentioned seeing the oncologist which I did think was odd given that I assume the urologist is mostly in the event of surgery which has been ruled out for my husband - I presume because of the spread. I'll kee reading & ask some more!

Also noticed I should have put psa was 500 not 50 (& I know that's not good - I don't know whether that's why the urologist was so pessimistic about life expectancy & also maybe why chemo has not been suggested) - hopefully things will become clearer soon.

Thank you so much again. We have not yet told the kids so I feel limited in times I can talk/phone people so an online forum such as this is amazing, Sharon
User
Posted 30 Jun 2018 at 22:58

We saw the Urologist about the bone scan etc at the end of November.  He was very negative about the spread to the bones, said only 1 in 100 cases did this, said there were lots of treatments to go through but needed to start on HT immediately, to be honest much of it was a blur after he said it had spread to the shoulder.  He may have said he was turning it over to the Oncologist, I really don't recall. We got the appointment letter in December and turned up to see her only to find out the appointment was for January, I had just looked at the day not the month or year!  When we finally saw her she was much more positive and went into more detail, showing us the scan etc. and explaining that he was already on the best treatment possible, but she would like to try chemo. As it happened he only had one treatment of chemo as other things complicated it too much. At the moment things are going well and the HT is working well.


If you do go on to chemo I would just say it is very important that he takes his temperature regularly, so when they talk about temperature take notice.


 I found the Oncologist and their nurses really helpful, much more so than the Urologist, I got the feeling he was a bit out of his depth once it had spread out of the Prostate.


May be an idea to keep a diary of all your appointments, it is amazing how quickly things get forgotten, I have found the last 8 months an almost total blur!


I cope by just taking each day/week as it comes, I try not to look too far ahead.

Edited by member 30 Jun 2018 at 23:01  | Reason: spelling mistake

User
Posted 03 Jul 2018 at 11:10
Thank you again Kita. I'm glad you found the oncologist and the team you saw helpful, this is hard enough so I'm sure it really helps to trust the professionals around you. Taking one day at a time is definitely a good philosophy but it's so hard! I think I am trying to plan for everything all at once as a way of coping. We got the clinic letter from the urologist yesterday and it seems quite bald how he's just written up what he told us about life expectancy. It would be good to see the oncologist just to get another perspective even if it's the same. We've emailed the nurse to see when it might be. And we've asked if he's eligible for any trials as I like the idea of being part of finding a way forward and if being more closely monitored. All the best anyway, thanks
 
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