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Help with back pain

User
Posted 18 Aug 2019 at 10:51

I'm 74 and have stage 4 metastatic prostate cancer, diagnosed 7 years ago. I've had a number of hormone therapies, chemotherapy and radiotherapy. My PSA was 1600 in July. My current problem is severe back pain. My body does cope well with any type of opioids as I get terrible nausea problems. I have had one lot of radiotherapy in April which helped, but the pain is back with a vengeance. Has anyone any advice on pain relief other than opioids which would help. At my last appointment with my oncologist he said there was nothing more he could do for me. If he can't, who monitors my cancer and where do I get advice from? I feel a little like I've been "dumped"  

Thanks

Tony

User
Posted 18 Aug 2019 at 20:46
Hi Tony, when the onco decides that there is no more treatment that s/he can offer, it can go on3 of two ways - the patient is either referred to the palliative care team (which may be a hospital team or may be based at the local hospice) or is referred back to the GP. Whichever referral it is, they should then be looking after you, making sure your pain relief is working effectively, etc.

I think your best bet is to make an appointment to see the GP asap and ask him/her whether they are going to look after you themselves or refer you on to a specialist team. At the very least, your pain relief needs to be re-assessed and ideally, that will be from the hospice team as they tend to be much better at this stuff than GPs or oncos are. If the GP refers you to the local hospice or palliative care team, they will also have someone who can look at your pension etc to see whether you are entitled to additional benefits to help pay for any care or equipment that you might need as the cancer progresses.

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

User
Posted 19 Aug 2019 at 10:08
Thanks Lyn for those words of advice. I was a little disappointed that, after only one course of radiotherapy and, given how ill I felt afterwards, the attitude of the oncologist appeared to be somewhat abrupt and dismissive. He has been my consultant for 7 years and I think I expected a little more empathy. Having read the information on this site and the numerous posts, there does appear to be other treatments we could have tried, maybe even another course of radiotherapy. My main concern is that as the cancer is metastatic, how will I know when it is moves to other parts of my body? Don't I need the expert advice of an oncologist for that?

Anyway I have decided to seek a second opinion from another oncologist at a different cancer hospital and I have an appointment with the local Macmillan nurse who is going to help me with pain relief.

Thanks again

Tony

User
Posted 19 Aug 2019 at 14:54
Is there any reason why you can't have more chemo? Radium225? Or maybe push for the luetinium trial or pay privately?

As you say multiple hormones again I assume you have tried Abiraterone and or Enzo?

User
Posted 20 Aug 2019 at 10:09

Thanks for those suggestions.

This is my first post on this forum and I realise that I should have given a lot more background information so that everyone could see what treatment I've had so far. We've recently moved and registered with a new GP and I did prepare a note for him explaining what had happened in the past. I thought it might be useful if I included that background note here.

Note to GP

"At the end of October 2011, I was diagnosed with aggressive prostate cancer and on the 9th November 2011 was admitted to hospital for a prostatectomy. My PSA at that time was 28.7 and it fell to 0.12 by March 2012. In June 2012 I had a course of 5 doses of radiotherapy. However, the PSA started to rise again from then on.

Following the operation I was prescribed cyproterone (one per day) and an injection of Zoladex every 3 months. I am still taking this medication. Because of the increase in the PSA level over the following months, I was prescribed abiraterone for a number of months and because that didn't have the desired effect, I was then prescribed enzalutamide. Unfortunately this did not have any effect either and the PSA continued to rise.

In October 2017, I was admitted to hospital following a bout of sweating and dizziness and a scan revealed a pulmonary embolism. As a result I was prescribed warfarin for an indefinite period. The scan also showed that the cancer had become aggressive and was present in a number of lymph nodes. My oncologist recommended chemotherapy and starting in November 2012 I had a course of 7 doses of docetaxel. My PSA at the start of the chemotherapy was 608.2. By the end of the 7 doses the PSA had dropped to 110.

By September 2018 the PSA had risen again and my oncologist recommended a further dose of chemotherapy but this time it was cabazitaxel. The PSA at the start of this treatment was 559. After 6 doses the oncologist recommended that I should cease the chemotherapy. Although the PSA had fallen to 253.8, the concern was the peripheral neuropathy that had developed during the docetaxel had significantly worsened, particularly in my feet. So it was then a case of watching and waiting.

At the beginning of April 2019, I started to experience severe back pain. A scan showed that a swollen lymph node on my left side was impinging on my 4th vertebrae and the cancer may well have developed in my spine, and that was the cause of the excruciating pain. At the beginning of May 2019 I had a course of 5 days of radiotherapy which greatly relieved the pain. Unfortunately, following the radiotherapy I suffered from bouts of nausea and a lack of energy. My oncologist suggested that they were not a consequence of the radiotherapy but as these symptoms started as soon as the radiotherapy finished I was not so sure. During June the pain returned. At my last consultation with my oncologist, he advised me that there was nothing more he could do for me other than recommend that I start taking steroids (Prednisolone) again and that I contact Macmillan and ask them for help with pain relief. I have arranged to talk to a Macmillan nurse on 22nd August.

Since the beginning of August 2019 the pain has severely increased and I now find it almost impossible to stand still for more than a minute and it is severely affecting my sleep. I have tried a number of painkillers with little success although I have found that any form of opioid does result in severe nausea.

The peripheral neuropathy continues to cause me concern."

Hopefully this will give you some idea of the depth of treatment I have received. Any suggestions would be greatly appreciated.

Many thanks for your interest.

Tony

 

User
Posted 21 Aug 2019 at 02:12

Have you tried cannabis?

User
Posted 21 Aug 2019 at 15:35
Not yet. I had thought of trying CBD as I don’t think it has opioid properties. I intend to discuss them both with the oncologist when I see him.

Tony

User
Posted 21 Aug 2019 at 20:44

Hi

Have you thought about patches? My husband has severe problems due to RT on his prostate (which was done to supposedly help a retention issue, not the usual RT to the prostate); his pain is severe and he now cannot walk. He has found the fentanyl patches much better than oral drugs for pain as it doesn’t touch the stomach.

worth asking about. I’m so sorry you’ve been abandoned like this. When we could not make the oncology appointment where we expected the same news as you (couldn’t go as hubby had a dreadful infection and now cannot walk due to the cancer), the phoned us and said they’d make another appointment for three weeks and if John was up to it they’d consider further treatment (he hasn’t had cabazitaxel). It was so kind, even though I know he will never make that appointment, he gave him hope and that was a lovely thing for the oncologist to do.

It’s such dreadful news that you’d think some compassion could have been shown to you. Our hospice nurse and GP work together to get thing right for John.

 

best of luck

Devonmaid 

 

User
Posted 21 Aug 2019 at 22:24

Hi devonmaid I’m so sorry that John is having such a tough time. Thank you for the kind words, it is comforting to know that complete strangers are on my side, it is uplifting.

Tony

 
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