Palliative radiotherapy on pelvis and spine

Hi Pretty Lady

We are in a similar situation to yourselves although my husbands pain has eased following recent external beam radiotherapy.

He was diagnosed in June 2016 with Prostate Cancer with spread to ribs, spine and pelvis areas (although he had probably had it much longer) He has had Prostrap injections and Chemo and Abiraterone  which all worked for a period of time. With chemo and Prostrap his PSA came down to below 0.1 from 200-300ish. When it started rising in early 2018, he started on Abiraterone which only unfortunately worked for a short time.  Shortly after xmas 2018 he was offered Radium 223 which we thought was a better option than chemo -Cazbaxitel (? spelling)  I would never want him to go on chemo again!  In December last year and January this year he started to get horrible sciatic like pain which was resistant to most painkillers. He'd had an MRI spinal scan which we had to wait weeks for the result - I rung the spinal cord compression unit and the nurse they put me through to could see the results had come in and we would have to wait for the onco appt, but she did say the report didn't look worrying. She said it mentioned 'inflammation' but no SPC.  I also rang the onco's secretary who again confirmed the results were in but we would need to wait for the appointment to discuss the results. This did allay our fears somewhat as we assumed that if it was serious he would be called up for an earlier appointment. 

Come oncologist appointment on March 13th, my hubby was seeing the Radium 223 nurse as well - he had had 1 session by then. He explained how agonising the sciatica pain was and how he had done nothing except sit in a chair for weeks and munch painkillers. The oncologist pulled up his MRI scan and just said 'you have a tumour on your spine pressing on a nerve which could cause permanent damage if we don't do something'  I completely lost it - I was at work at the time. My son went to the hospital to support him as they started him on a 5 day course of external beam therapy that day. When we went for the other 4  doses the oncologist was elsewhere, however I rang the Radium nurse as I was concerned about the situation and she works closely with the oncologist. She went off on a tangent about mets (which we knew about obviously) and re-iterated that there was no cause for worry with regards to SPC - and the oncologist would only look at the mri at appointment - but all the same she would look into the spinal cord compression emergency number which didn't seem to work. I explained that the nurse told us there was nothing to worry about and to go back to gp's for more painkillers.

Anyway, enough about that. But I have to say I have little faith in his medical treatment over the last almost 3 years. We still follow the oncologists advice up to a point. We have an appointment next week - and he hopefully will be booked in for more Radium 223 sessions. The sciatica pain is much improved  - still some back pain around the site where the radiation zapped him, but he has gone back to work on a phased return and is active again. What I really want to say is that I have researched and researched everything possible on Prostate Cancer, and I watch my hubby constantly for signs and symptoms and interrogate him daily! I know him better than anyone and we try and take life one day at a time and make the most of our time together. I have put him on a fair few 'supplements'  after months of research. I think they boost his immune system and he surely needs that with all the horrendous side effects from the prescription drugs. I don't think there is any magic cure for the disease, but it helps give us more than just a tiny glimmer of hope. And if it just a placebo effect........well it still helps. The cancer specialists have had many years of training and know their stuff inside out and some are without doubt amazing in their own specialist fields. But I feel that although some of them are starting to think 'outside the box'  there are still those who just rigidly follow the medical procedures, adjusting treatment to suit the individual but still all invasive, and some with terrible side effects that kill the immune system and make for very low quality of life. I know our life has changed completely and we have had the roughest time, and I know exactly what you are going through, but we are still here... battered but surviving just.

I just hope we can offer each other some comfort and support. I really hope your hubby is having a better time now

Regards

Ruth 

Hi

You are going through it right now and I really feel for you. We're almost 3 years since diagnosis so a couple of years behind you there. Like you say, 3 years of near normality after diagnosis for you is a blessing. The original diagnosis was such a shock to us and we thought it was a death sentence then. I too am eternally grateful for our almost 'normal' life after the chemo effects started to wear off.

My husband is now just 62, and I am 2 years younger.  He has always been fit, strong and very capable. He hates that I now carry the heavy shopping bags in from the car, and sometimes I turn a blind eye and let him do it anyway. he just wants everything to be normal - he tried to go back to work full time recently after having weeks off with severe sciatica pain - after 2 weeks he knocked that back to 4 hours a day! He's managing that, just about, but gets tired easily and get's aches and pains 6 weeks after his external beam therapy on his spine. 

He has an appointment with the oncologist tomorrow and had his bloods done this morning. If they are ok  they will continue with the Radium 223. The 1 session he had at the beginning of March didn't cause many side effects, but then they didn't lesson the sciatic/back pain and that's when they decided to give him the 5 daily EBRT sessions. It's been a steady, slow recovery since then

How is your hubby now? I hope the Radiotherapy is kicking in and lessening his pain.  He has gone through similar treatments to us, but we had Abiraterone instead of Enzalutamide. When hubby  started it his PSA was 14, and it knocked it back to 7 for a short time before it started to rise again so it obviously didn't work long for us. He's been off it since xmas. Apparently not recommended when having Radium 223. We weren't told that he should come off the Abiraterone but after a bit of research I found that he shouldn't be taking both together.

It is uplifting to have found someone with a similar mindset. It does help when you feel so alone in this journey. I hope you are both feeling as well as possible right now

Regards

Ruth

Goodness Shingles! I hope the anti viral meds help and he starts to feel better very soon. It's good they've found a reason for him feeling so unwell. Good job you were so persistent.

The appointment yesterday was pretty ok. Hubby is re-starting the Radium 223 next Thursday. Blood levels were all acceptable for that. There is some slight anaemia and I suppose that is why he gets tired so easily along with the emotional and mental effect of the disease . He gets so emotional at times!

We are continuing to think 'outside the box' and using certain well researched supplements along with regular treatment I noticed there was a recent post on this forum about some of these not being safe as they have not been proved (i.e medically researched and approved) and that some of these could cause a detrimental effect.  It's a massive argument which is growing with increasing accessibility to information. But really, how safe are some approved treatments?  chemo for example. The side effects can cause as much suffering as the disease. After reading just on this forum, there are cases where chemo has caused a mans immune system to lower to such an extent that they are unable to fight even the slightest infections. Food for thought.

I really hope your hubby is improving so he can benefit from the radiation treatment. He has done so well as he has had PC for a long time. I hope his decline is starting to turn around

Best wishes

Ruth

Hi Leila

thankyou for the tip about the St. John’s wort. I don’t think they will give that particular drug to my hubby as he’s already on two types of morphine for his bone pain.

it sounds like it’s going to be a long journey to get him feeling better, it’s a nasty condition to have on top of everything else.

best wishes to you both, keep well and enjoy every day.

kind regards

linda G