Alternative to 2nd course of chemo

User

Posted 06 Oct 2021 at 04:03

Hi my husband was diagnosed in 2008 with advanced Prostate Cancer PSA 64 rising to 80 Gleason 4+3 with metastases in his hip. He went on the stampede trial at our local hospital in Shrewsbury but only received standard hormonal treatment but did work well for 18 months. Since diagnosis had 12 weekly hormone injections Advised by the Oncologist at our local hospital to start Chemotherapy.but enlisted onto the Trapeze trial in Birmingham which gave the added strontium injection as well as chemotherapy. Chemotherapy did not stop the progression of the cancer and through the trial started Abiraterone + low dose steriods for approx 4 years, was very successful felt well and PSA zero, but suddenly affected his Liver so was stopped immediately. Recommenced after a couple of months on half dose and then went back on full dose. Liver ALT & GGT started to rise very quickly again, so it was stopped, Had 6 monthly CT/PET Scans over this period and the metastases was still confined to the Hip. Our oncologist then advised Radiotherapy as said was showing good results for Advanced Prostate Cancer. We did query Sabre as less side effects, more accurate,pfewer sessions, but not eligible. Because of the travelling we asked if we could have the Radiotherapy at our local hospital in Shrewsbury, unfortunately just at this time our Oncologist moved hospitals, so lost that continuity of care. Started Radiotherapy in October 2019 bad side effects after treatment, initially urinary incontinence which has now resolved with medication but still bowel urgency and frequency and sometimes blood in faeces which the Oncology Nurse said was because of the Radiotherapy. Since having Radiotherapy, because of COVID had 12 weekly telephone appointments, once with the Oncologist during these 2 years the remainder with the oncology nurse. PSA started to rise, feeling more fatigued than usual and flu like feelings and temperature fluctuating, the occasional backache. Last Monday temperature was 38.6. Very worried as my husband did not look well. Called 111, seen by GP that morning who did a full examination heart lung abdomen and took bloods, had no pain. Next day G.P. rang to say worried about blood results CRP 91 and GGT 88., commenced Alendronic medication 4 weeks ago for Osteoporosis. GP said would like a CT Scan but 12 weeks waiting so thought should be admitted, as would get a scan on admission and follow up on blood results. My husband refused to be admitted as his Brother died with COVID 2 weeks ago after being admitted to hospital after a fall. Saw Oncologist 28th September at local hospital PSA 4.7 Oncologist not concerned about bloods even though we said the GP was concerned, he said to tell her to contact him, can’t get a CT scan for weeks, Available treatment was Chemotherapy but PSA not that high so no treatment as yet to see him again in 8 weeks. We suggested other medication alternatives which we had researched, the Oncologist says not eligible and that 5 years was the prognosis for advanced Prostate Cancer. The GP has made a referral for a CT Scan at the Nuffield in Shrewsbury which should get within 2 weeks. Can anybody please tell us what treatment is available other than Chemotherapy. We do not have private insurance but have private means but not unlimited.

User

Posted 06 Oct 2021 at 07:21

I think your husband needs to be re staged so a CT will be useful for that, maybe even a PSMA scan to work out what is going on.

Once you know what is happening you will be in a better position to understand what treatment is best.

Did the RT treat his pelvis or prostate or both?? Is the osteoporosis caused by the HT or is the cancer in his bones?

The ONCO sounds a bit dismissive, maybe pay for a second opinion at a centre of excellence?

User

Posted 06 Oct 2021 at 10:41

I am not sure that a PSMA scan will make much difference as he has exhausted all treatments except perhaps trying the other form of chemotherapy, Cabazitaxel.

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

User

Posted 06 Oct 2021 at 15:56

13 years with Stage 4 is amazing Jeanette, hope he goes on to make it 20.

User

Posted 07 Oct 2021 at 12:07

I had a second opinion from the Royal Marsden via that email. I found it very useful and a straight forward process that culminated in a very informative zoom call that has probably changed my treatment path.

For a pelvis met I don't think it matters which RT?

User

Posted 07 Oct 2021 at 17:11

I think you have read too much into SABR and are imagining it to be something else. SABR is minimally invasive as a radical treatment to cancerous areas of the prostate (rather than the whole gland or to whole gland and wider pelvic area) but not really relevant to a bone met.

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

User

Posted 18 Nov 2021 at 08:03

Good luck for friday with the GP, my Tony was diagnosed in 2005 but told in 2006 so I Know what a strain it is living with the stress and worry over such a long time but at least they are still here with us. xxx

User

Posted 18 Nov 2021 at 08:12

What have they said about trying Enzo?

User

Posted 18 Nov 2021 at 09:36

Tony did not have any real problems with side effects after RT in 2006 and on and off HT till 2018 still worked and played golf twice a week and the gym 3 times a week, HT failed in 2017 had abiriterine oct 18 to march this year and had chemo oct 18 to may 19,more rt dec 19 to jan 21. Had quite bad side effects to the chemo but other treatments he was ok. he is now very fatigued and does not get about much. he is still on HT and diethystilbestrol but his psa is creeping up. he has not been to the gym or golf since he had chemo.

regards Barbara.xx

User

Posted 22 Nov 2021 at 21:23

Sorry to hear this. Thinking of you both

User

Posted 22 Nov 2021 at 22:55

Sorry to read this Jeanette. Really hope Tony will be feeling well and more positive very soon. Keep strong and take care x

User

Posted 24 Dec 2021 at 07:21

sorry to hear this, good luck with the scan x

regards barbara xx

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User

Posted 06 Oct 2021 at 07:21

I think your husband needs to be re staged so a CT will be useful for that, maybe even a PSMA scan to work out what is going on.

Once you know what is happening you will be in a better position to understand what treatment is best.

Did the RT treat his pelvis or prostate or both?? Is the osteoporosis caused by the HT or is the cancer in his bones?

The ONCO sounds a bit dismissive, maybe pay for a second opinion at a centre of excellence?

User

Posted 06 Oct 2021 at 08:53

Hi thanks Frankij1

scan hopefully next week at Nuffield ringing today to find out when. Will request private referral for PSMA after, is this a PET Scan or something different.

Was having PET Scan routinely 6 monthly while under the Prof. Radiotherapy treated his prostate was then planned to have SABRE on bone mets on hip but Prof left Birmingham so Radiotherapy on hip never materialised.

Told Osteoporosis was because of long term hormone therapy

Where is a centre of excellence which we can contact

User

Posted 06 Oct 2021 at 10:41

I am not sure that a PSMA scan will make much difference as he has exhausted all treatments except perhaps trying the other form of chemotherapy, Cabazitaxel.

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

User

Posted 06 Oct 2021 at 11:55

Hi LynEyre

There are other alternatives to Chemotherapy written about, which are available for some, Bill Turnbull TV and Radio presenter has has been treated with R223, and now receiving Lutetium177, also I have read there has been some success after Abiraterone with Enzalutamide and what about Apalutamide and SABRE Radiotherapy on the metastases in his hip, are none of these available to my husband. Life is precious and need to try all avenues.

We are trying to live everyday as normal as we can. Remember we have both lived with Prostate Cancer not 5 minutes but 13 years and has been a rocky road and very very stressful for both of us at times. We have joined a Tai Chi group, have two Cavalier King Charles Spaniels Harvey 6yrs and Amy 5yrs who keep us on our toes. We love cruising and hope to do that again in the future and definitely living life looking forward

User

Posted 06 Oct 2021 at 12:58

Apalutimide and enzalutimide are not approved for after abiraterone and the sad fact is that one of the three fails, the others will also fail very quickly.

Radium 223 can do something towards stabilising bone met pain but it doesn't actually do anything to treat the prostate cancer and for some new, R223 makes the bone pain much, much worse.

Lutetium is a possibility if he tests as positive for PSMA+ and can get a referral to the relevant trial. But a couple of members on here have had lutetium recently and been very ill with it and you would have to check whether the liver problems and / or Zometa make him ineligible.

A zap of RT to the hip to reduce pain and / or stabilise a crumbling joint is certainly possible but it is referred to as palliative RT. SABR is used in different circumstances and as the onco said, not so relevant to you.

You haven't said why the onco thinks the current HT is failing? Is the PSA rising?

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

User

Posted 06 Oct 2021 at 15:52

PSMA PET scan seems to be replacing all other scans for accurate staging? Assuming you have PSMA reactive PC.

Re Aberaterone it was stopped because of liver toxicity not because it failed. Are the other second generation Hormone drugs as toxic for the liver? Can you have Enzo (not withstanding NICE guidelines?).

If you only have the one met in your hip push for the RT.

User

Posted 06 Oct 2021 at 15:56

13 years with Stage 4 is amazing Jeanette, hope he goes on to make it 20.

User

Posted 07 Oct 2021 at 01:41

Thank you all for your comments, sharing your thoughts and advice really helps, we feel somebody is listening and not alone. CT appointment next Wednesday, not had a Scan for the last 2 years. Previously has CT or PET scan 6 monthly.Hoping still only 1 met, we put that down to the strontium he had with the chemo in the trapeze trial.

Worried about further standard RT to the hip because of the bowel side effects he is still experiencing, frequency but particularly the urgency, and intermittent blood in faeces.

What is PSMA + and is there an open trial for lutetium in the West Midlands UK

As Francij1 picked up Abiraterone was stopped because of liver toxicity not because it failed, does anybody know if the other 2nd generation hormones are as toxic for the liver. Enzalutimde has been mentioned as an alternative previously by the Prof in Birmingham and recently by the Oncology Nurse but the Oncologist last week said not eligible as had Abiraterone and failed; can’t get through to people even though we keep saying it that Abiraterone did not fail. The only treatment having is Prostap 12 weekly and reading latest wall, only effective for 2/3 years anyway, wonder why they continue with it if that is true. We presume PSA going up as it has after 18 months max of each treatment, except for Abiraterone.

Tony’s Temperature back to normal last 24 hours and feeling better, we were looking at what was causing this and the only real change was starting Alendronic 4 weeks ago, so did not take it last Sunday; informed GP., may be a coincidence but as well as the temperature coming back to normal he is looking much better.

Tony is having INR bloods done tomorrow and we requested if he could have repeat bloods as well to see if any changes from 10days ago, particularly as the CRP & GGT were elevated then, G.P. Ok it

Can you tell us from your own experience the centres of excellence in the UK, many thanks to you all

User

Posted 07 Oct 2021 at 08:33

RT to his hip wouldn't affect his bowel- it is one or possibly 2 quick zaps just to the met. 5 minutes or so.

Whether or not abiraterone failed is determined by how his PSA reacted at the time and since. Do you have a record of his PSA results over recent years?

Edited by member 07 Oct 2021 at 08:35 | Reason: Not specified

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

User

Posted 07 Oct 2021 at 11:01

Hi LynEyre PSA was below 1 while on Abiraterone, immediately responded so it did not fail. On half dose went up slightly. Was on the on the stampede trial at RSH then Trapeze trial at the Q.E. Hospital under Prof Nick James, have retained all the paperwork connected to this trial. Are you saying standard Radiotherapy or we understand is ‘less invasive’ SABRE on bone met.

Watched Tom Parker on this morning from the band ‘The Wanted’ who has a brain tumour and he says money dictates treatment.

There is a ‘second opinion’ email contact on Royal Marsden website. Don’t know if this would be beneficial but might be a way to contact Pro James; we did have Pro James email address while he was at the Q,E but can’t find a direct contact now, thought he might still be able to advise as Tony was on both Stampede and Trapeze Trials. The Oncologist who took over at the QE from the Prof was fairly dismissive, lived too long being cynical.

many thanks for your email and continuing advice and interest Jan

User

Posted 07 Oct 2021 at 12:07

For a pelvis met I don't think it matters which RT?

User

Posted 07 Oct 2021 at 17:11

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

User

Posted 18 Nov 2021 at 01:13

Thank you all for your comments and advice.

LynEyre you are right I think I have read too much into SABR. Thank you Francij1 letting me know about your second opinion at Royal Marsden, a positive experience for you. Once Tony has had the PET scan & got the results will contact the Royal Marsden for a second opinion. You also confirm what LynEyre says about RT which taken on board.

Tony is very fatigued and down at the moment, is experiencing back and right side pain, up until now he rarely had pain from the met in his hip. I think he feels worn down, frustrated not able to do what he wants physically; 13 years of hormone treatment, chemo, abiraterone, hospital visits, blood tests, CT/PET Scans and always the constant worry and waiting for results. Losing his younger brother to COVID last month has also been very difficult time.

The positive things in our daily lives are our two Cavalier King Charles dogs Harvey & Amy they keep us going, they are such loving dogs and depend on us and keep us in a strict routine, I am sure they can tell the time. We hope to be able to cruise again soon and want to celebrate our 50th wedding anniversary in July on a cruise.

Tony seeing GP face to face Friday as ESR CRP & GGT all still raised but temperature is back to normal

User

Posted 18 Nov 2021 at 08:03

User

Posted 18 Nov 2021 at 08:12

What have they said about trying Enzo?

User

Posted 18 Nov 2021 at 09:18

Hi Francij1 first said had abiraterone so not eligible, but once we stressed it wasn’t stopped because it was not working but became toxic to the Liver they are now saying because he was referred because of palpitations to the cardiologist while on abiraterone he is not suitable fo Enzo. The cardiologist said he had left ventricular heart block nothing to worry about and possibly born with it.

Yes essexbabe certainly we must celebrate they are still here, you both have gone through this long journey, longer than us, it’s good to speak to somebody that understands the daily stress and worry. Your Tony is still here what has helped the most.

COVID and lock down has made things more difficult for everybody and we do appreciate what we’ve got, we love our home in the Shropshire country side, feel relatively safe, luckier than many people and thank goodness for online shopping.

User

Posted 18 Nov 2021 at 09:27

Hi essexbabe you mentioned Dexamethazone Tony has been on this a very small dose while he was on Abiraterone and was continued to be prescribed it now they want him to come off it, confusing

User

Posted 18 Nov 2021 at 09:35

Hi LynEyre just picking up conversations as Tony lost his brother to COVID. We do have a full record of his PSA and while on Abiraterone was under zero all the time even on half dose rose only very slightly.

User

Posted 18 Nov 2021 at 09:36

regards Barbara.xx

User

Posted 18 Nov 2021 at 09:37

Hi LynEyre forgot to say Tony was on Abiraterone for over 4 years and well and fit

User

Posted 22 Nov 2021 at 09:07

Tony very depressed Saturday night, crying, feels in his words, he’s finished, useless, not able to do anything, not worth anything, fatigued, tired of investigations.

A little more positive over the weekend but C/O of a lot of back pain looks tired and worn down, not my Tony who I have been married to for nearly 50 yrs, even during chemo and RT, remained positive, music blasting, listening to classical music with Bill Turnbull, Golden oldies, singing in the shower, telling and sending jokes to everybody and would talk to anybody, I miss that person want him back

Rang PET Scan Clinic appt earliest Dec possibly January. Face to face appointment with Oncologist tomorrow.

User

Posted 22 Nov 2021 at 21:23

Sorry to hear this. Thinking of you both

User

Posted 22 Nov 2021 at 22:55

Sorry to read this Jeanette. Really hope Tony will be feeling well and more positive very soon. Keep strong and take care x

User

Posted 23 Nov 2021 at 00:49

Have you been referred to your local hospice team or macmillan nurses? They may be able to offer counselling or just someone knowledgeable to talk to who knows how Tony is feeling and can help him to make sense of it all. Many hospices also offer holistic therapies, massage, etc which might help and are usually far better at pain management than the GP or hospital team. They can also give you some much needed support. Another option is a Maggie's centre if there is one in your area - usually based at big hospitals but are independent and wonderful.

Maggie's, hospice & Macmillan services are not just for end of life - ask GP or nurse specialist to refer you.

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

User

Posted 23 Dec 2021 at 08:22

Hi I’m back, stressful time, Tony had a bad fall 29th Nov skin both arms that required dressings bruises everywhere said he felt out of it when he fell. The GP wanted him to stop Dexamethazone 0.5m a very small dose, he has been taking steroids since commencing chemo in 2010 large doses initially but while taking Abiraterone and since only a low dose. He had reduce to 3 tabs per week.

He had reduced before and felt unwell Tony this time he decided to recommence Dexamethazone to daily again and within 4 days mentally and a little physically his old self, except for the wounds on his arms and bruising etc, from fall, eating much better. Asked the GP to re prescribed the Dexamethazone as running out of tabs but refused said a definite NO.

Spoke to Oncology named nurse who contacted surgery who advised to prescribe long term. She said she did know people that had become steroid dependent and she thinks this has happened to Tony. Following a face to face meeting with the Oncologist a PET Scan has been arrange in Birmingham today and depending on results to follow with Radiotherapy (Sabre)

User

Posted 23 Dec 2021 at 21:40

Sorry to see this.

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

User

Posted 23 Dec 2021 at 23:47

Thanks for your interest and concern

User

Posted 24 Dec 2021 at 07:21

sorry to hear this, good luck with the scan x

regards barbara xx

User

Posted 24 Dec 2021 at 08:08

Thanks Essexbabe, scan done 3 hours, glad we took a taxi to Birmingham and the M6 not too bad, see consultant for the results on the 6th January. Tony felt happier now it’s done, nothing more can do now until then.

Also got blood results and Liver GGT normal ESR still raised 59 but down, when he had the high temperature was 110, which indicated infection or inflammation. GP requested heart scan so going on the 7th to exclude any infection there. Did see a heart specialist when he was taking abiraterone as had palpitations and found he had left ventricular heart block but told he might have always had this and there was no cause for concern

With all the COVID problems hope you can enjoy Christmas…Jan

User

Posted 06 Jan 2022 at 15:10

Saw Oncologist at Shrewsbury today with PET Scan results, numerous mets in pelvis, vertebrae and shoulders. I am so so angry. no follow up after Radiotherapy in October 2019 when Tony was promised further Radiotherapy (SABR) to the one original met in his right hip PET Scan results and might have stopped this further spread; only phone appointments mostly by the quick talking Oncology Nurse.

Treatment now offered is Radium 223 at Wolverhampton or further chemo, not offered further Radiotherapy.

Chemo was life threatening,high temperature, admission to hospital 4 times, neutropenia three times and breathless and temp, found multiple pulmonary embolisms and been on Warfarin since, also venous disease and recurrent leg ulcers.

Reading previous conversations not very positive feedback re Radium 223 at Wolverhampton or side effects, please can any body give feedback, many thanks

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