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Anyone had chemo for high risk locally advanced?

User
Posted 06 Aug 2018 at 17:53

Hello and all the best to everyone. I wondered if anyone has had or been offered chemo (docetaxel) with a diagnosis of high risk locally advanced (into pelvic lymph nodes) PC? Hormone therapy started a month ago. It has been suggested that this would be the best treatment option but I think the current plan is radiotherapy. I think it seems to depend on whether it is thought that the PC may be on the boundary of metastatic or not - but I may be wrong. Would be grateful for any feedback before the next consultant's appointment. Thank you.

User
Posted 06 Aug 2018 at 20:16
You may want to click my picture and read my profile. I was G9T4N1MxR1 at surgery but they didn’t know it. They only found out on pathology. I think treatment plans differ depending on where you are and who your Oncologist is. The reason I’ve never accepted RT after surgery is because they believe it’s metastatic and won’t offer cure. However they still want me to have it and I believe they aren’t offering anything else because I’ve refused it. But if you were to read my story you’d realise I’ve been so traumatized by the entire process that I’m more than happy being left alone having recovered well from surgery 3 yrs ago. Maybe in your case they are hoping for cure with RT and HT alone , and wouldn’t offer Chemo unless it failed. I think when a cure path has failed they can then offer early Chemo with HT which can make the HT more effective and last longer

If life gives you lemons , then make lemonade

User
Posted 06 Aug 2018 at 21:05

Hi Caron,
Things are moving very quickly in terms of chemo and prostate cancer. Until maybe 4 years ago, it was only given to men in the final stages of the disease when all other treatments had failed and the hope was that it would reduce some of the symptoms for a short time. Chemo cannot cure hormone based cancers in the same way as it can cure leukemia, etc. The big breakthrough was realising that chemo given earlier to a man with advanced PCa could make the hormone treatments work better and for longer, and we have seen some stunning results even just among members here. However, the new thinking was all about men with advanced cancer with mets ie who are incurable.

I have recently read a couple of papers by oncologists who think that introducing chemo early to men who have locally advanced cancer may improve the likelihood of RT/HT being curative but there is no specific trial running and no data at the minute. I can think of only two or three members on here that are on curative chemo / RT / HT which gives you an idea of how new it is as a concept.

I suppose the issue for you is who suggested it? Was it the onco or a well-meaning lay person? If it was the onco, I would ask them why they are suggesting what is still an unusual route, whether it is part of a trial or they have seen or read something that suggests it would be a good approach, and why they think it is right for your OH. Keep in mind that chemo is quite a dangerous treatment with its own risks but that some men tolerate docetaxel extremely well.

Edited by member 06 Aug 2018 at 23:40  | Reason: typo

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

User
Posted 06 Aug 2018 at 22:31

Hi Caron

My OH was diagnosed with locally advanced prostate cancer in march. He is on hormone treatment and was offered docetaxel (chemo) he is also on the stampede trial. We were led to believe early chemo with HT has been shown to increase life expectancy by 2 years. 

Hope this helps

Thanks Karen

User
Posted 06 Aug 2018 at 23:37

Hi Caron, my OH was told by the urologist, that they were going to throw the kitchen sink at the cancer, he had a starting psa of 135, 3tb N0 M0, Dec 15. He is on 12 weekly prostrap, had chemo and radiotherapy, When we first saw the oncologist, he thought it was likely he had micro mets. The last few his psa has started to rise again, had PET scan last week, MDT meeting tomorrow to discuss results.

Good luck

 

Sheila

Edited by member 06 Aug 2018 at 23:40  | Reason: Not specified

User
Posted 07 Aug 2018 at 17:22

Hi Caron,

             I was given chemo with HT and 37 sessions of radiotherapy....I was diagnosed with T3bN0Mo  Gleason 8...3+5 and with a psa of 24.6,all scans clear and cancer contained in the prostate but with the cancer heading towards the bladder.......the biopsy Dr hit 12 out of 12 all with his needle,cancer in all samples...I was told that they suspected micro mets and that's why there going to throw the kitchen sink at it.......all with curative intent..

             I tolerated the chemo quite well, I worked most of the way through it, even through most of the radiotherapy. The HT  was the problem for me. I am now office bound, I had a very manual job but I do not have the energy for that right now......Just finished the HT...30 months on that in total...psa at last check was 0.03, next psa test is beginning of Oct.

             I can honestly say, I feel that I have had been given the best chance to beat this.

            Fingers crossed

Shaun

User
Posted 21 Aug 2018 at 11:45

Thank you all. It's really helpful to hear different opinions/journeys. Apologies for slow reply: teenagers and summer holidays plus more uncertainty! For context the chemo route was initially told to us at a follow up appointment with the urologist, confirmed in writing, and then we were told actually it was to be radiotherapy following an MDT meeting. A (much later) appointment with the oncologist was found to be just about the radiotherapy (at the time of my posting I thought it was a general treatment discussion) which will start in January. We were told that if we were interested in chemo then we would need to make another appointment with the right oncologist but that the MDT decision was that radiotherapy was the way to go. I think it might have been decided now anyway because following that appointment my husband doesn't want to follow it up as he's happy with the oncologist that we saw and feels that any gains would be 'marginal' anyway. I'm stuck inbetween and would like to have an appointment to discuss it but at least at the moment I think there isn't space in his head to complicate things.....thanks again and any further thoughts welcome.

User
Posted 23 Aug 2018 at 23:02

Diagnosed with Locally Advanced PCa early June (T3bN1M0 (initial now M1) Gleeson 9 5+4 100% single core Initial PSA 73). Signed up for STAMPEDE Trial and my treatment started with HT (Prostrap) 20th June and Chemo (Docetaxal) started on 3rd July this year. Final PSA result just prior to 1st chemo was 108.

This is what they call up front treatment and is meant to be very benificial as opposed to waiting for the PCa to progress before reverting to chemo.

After 4 weeks PSA down to 9.9 and after 7 weeks reading was 3.9! I am tolerating the Docetaxal very well after 3 sessions, some mild indigestion initially then mouth feels metallic and taste goes a bit funny for a few days. After that the Steriod pills kick in and I seem to have an abundance of energy. Not felt any adverse reaction to the Prostap injection and just moved to 12 week ones.

Not able to have RT as PCa has spread to lymph nodes well outside the pelvic region and my PET scan found a very small bone metastases in the pelvic bone.

So in summary, HT seems to be working well and have been told I will be on this for my lifetime. Have been told I will have another scan after my 6 chemo session (mid October) to assess what has happened to the affected lymph nodes and bones. Wish this wasn't so long but they insist that the chemo treatment run it course.

If anyone who reads this and is in a similar position to mine when you have been diagnosed go for the up front treatment.

User
Posted 24 Aug 2018 at 07:31
Hi Caron ,my OH journey is very similar to Andyloates ,Gleason (4+5) 9 PSA 23 N1 M0 he also had early chemo and within 3 sessions the PSA went down to 0.01 undetectable,that was over 2 years ago and has remained the same ever since .

Gary continued to work all the way through in a manual job ( constructing marinas!) but towards the end was very fatigued .

He is currently on the stampede trial arm j and still working full time but with more holidays slotted in .

Good luck in your journey

Debby

User
Posted 30 Nov 2018 at 21:31

Hi,

I appreciate that this post is a few months old now but I was just wondering how everyone is getting on?

My husband is gleason 9, PSA 167, bone scan clear but rnlarenl lymph nodes in pelvis.

MDT meeting decided on HT with radiotherapy. To me this doesn't seem aggressive enough? I've been looking at Brachy and possibly adding chemo as well 

User
Posted 01 Dec 2018 at 00:42
Brachy is usually only considered suitable for a fairly low risk prostate cancer. Where we live:

- PSA should be less than 10

- G7 or below

- T1 / T2a

- no urinary problems or hesitancy

When John was diagnosed brachy was his first choice but at that time they didn’t offer it to younger men due to the slightly higher risk of second cancers later down the line. I understand some hospitals have relaxed this rule more recently.

Apart from a couple of very unusual members here, chemo is not offered to men on curative treatment plans. Chemo doesn’t kill prostate cancer; it can weaken it to make Abiraterone or Enzalutimide more effective for longer but unless your OH goes onto the Stampede trial this won’t be relevant to him.

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

User
Posted 12 Dec 2018 at 19:00

Sorry for the delay, I've been trying to give myself a break from information overload.

I've just read on this website that chemo should be considered for high risk locally advanced based on results from Stampede trial (this was from the latest news section)

As we know this is more effective when given early.

I'm really concerned that the clinical nurses are being obstructive and I don't know where to go from here. I'm not happy with the current treatment plan or would least like a discussion about it but they keep telling me I have to wait for oncologist appointment on the 22nd January. This would be fine but my husband would of been on HT for 3 months at that point

User
Posted 12 Dec 2018 at 20:24

Not sure how helpful it is to assume everything you read is relevant to your case; I can see why the medical team want you to wait for the allocated appointment. Most outpatients departments will be closing down in the next few days until the new year, or at least existing on a skeleton staff so I am not sure you could get anything much earlier than 22nd January anyway?

Why are you worried about him being on HT for 3 months? The longer he is on it before RT, the better the outcome tends to be and 3 months would be the absolute minimum.

Chemo with curative RT is not approved by NICE and there is currently no trial for you to request referral to so you are not going to get it through any normal route. You may be lucky and find that when you do see the specialist, s/he is an adventurer and knows a way to do it but really, they are the experts and know better than any lay person.

'Early' in relation to chemo for prostate cancer does not mean 'early after diagnosis' ... it means 'not palliative' or 'not at end of life stage'

Personally, I am struggling with why you are not happy with the treatment plan. With locally advanced PCa, he is fortunate to be offered radiotherapy with curative intentions and I would be grabbing that with both hands.

Edited by member 12 Dec 2018 at 20:25  | Reason: Not specified

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

User
Posted 12 Dec 2018 at 20:47

Not meaning to be difficult, I just want to make sure he is given everything possible as he's my world.

I know it's a different cancer but I suppose my concerns come from the fact he had throat cancer 11 years ago with lymph node spread and they did surgery, radiotherapy and chemo so my concerns probably come from the treatment not seeming aggressive enough.

I'm ok to wait for RT as I understand HT makes it more effective. I was more concerned waiting so long to discuss treatment plan.

I am grateful as aware it could of been worse but not fortunate as such

I'm sure I'll feel better once we see the oncologist 

User
Posted 12 Dec 2018 at 23:35
I am sure they don’t think you are difficult.

Are you aware that chemotherapy isn’t one thing; it is many different treatments? Chemotherapy just means ‘drug for cancer treatment’. The chemo used for prostate cancer is different to the one used for leukaemia or the one for throat cancer? And that chemo can’t cure all types of cancer? For example, testicular cancer and Hodgkin’s lymphoma is very susceptible to chemotherapy but in other cancers like leukaemia, bowel and breast cancer the chemo is used only to help other curative treatments work. And then in other cancers like prostate / brain tumours / liver cancer, it is used solely to make life more comfortable in the terminal stage and to extend life where possible. What you have read about Stampede is the suggestion that chemo for prostate cancer could in future be considered as a group 2 (helps other treatments to work) as well as a group 3 (palliative treatment). But it isn’t approved yet as far as I know.

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

 
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