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Recovery after first radiotherapy

User
Posted 10 Aug 2018 at 13:30

Hi, 


I wonder if anyone can help please? My husband has been diagnosed with stage 4 advanced metastatic prostate cancer. So far he has had hormone suppressant injections and takes zomorph morning and evening. He is schedueled to have his first radiotherapy treatment on Wednesday. We are going away on Saturday to Devon for  a week. I am aware that everyone reacts differently to treatment but I would just appreciate some advice on whether to postpone his radiotherapy treatment until we return. He is scheduled for chemo in about 8 weeks so I’m tryong to do nice things while he still has the energy Xx 

Edited by member 10 Aug 2018 at 15:55  | Reason: Auto correct wrongly corrected - as usual!

User
Posted 10 Aug 2018 at 15:37

VickM


How many radiotherapy sessions is he scheduled to have ? 


Thanks Chris

User
Posted 15 Aug 2018 at 23:32

Hi Vicky,


Ramble on as much as you want or need to. It is a major function of this forum, to let us all "let off steam" and to voice those worries and concerns in a place where you know that they will be received sympathetically. I think we have all sought solace here. I certainly have many times.


Yes, 5000 is a terrifically high PSA (mine was 168 and that was considered frighteningly high) but in the end, it is nothing but a number. I think you may find people starting off with a PSA of tens of thousands, but they still respond to the treatments. It can come down very quickly and very dramatically. I am sure you will be surprised at how much it will reduce.


It is good to know that Laurence's pain is well controlled and that he has managed to put on some of the weight he lost.


I was on Degarelix for about two years and I have to say, I had a lot of trouble with it. But I haven't heard anyone else complaining about it. I guess it was just me! But once I started the chemo, I had to tell my onco that he had to stop either the Degarelix or stop the chemo, because I couldn't cope with both. He stopped the Degarelix and put me on to Decapeptyl (with some reluctance). I was told that Degarelix is the "gold standard" of hormone treatment, so Laurence is on the best.


I guess Laurence has had his RT planning today? I hope it went well and I hope that you now have a better idea of what it is all for and what is going to happen. I hope you feel reassured now.


So take care and enjoy the holiday. Try not to be too pessimistic. I am sure there will be many hours, days, weeks, months and years ahead.


Best wishes


Peter

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User
Posted 10 Aug 2018 at 15:37

VickM


How many radiotherapy sessions is he scheduled to have ? 


Thanks Chris

User
Posted 10 Aug 2018 at 15:46

Hi Chris, 


We aren’t sure but think it’s just a few. The cancer has spread into his spine in various places and therefore he can’t have all areas treated. 


It‘s all new and scary. Thanks for your help. 


Vicky 


 

Edited by member 10 Aug 2018 at 15:47  | Reason: Not specified

User
Posted 10 Aug 2018 at 16:55

Hi Vicky,


I can appreciate how scary it all is. I guess your husband's diagnosis is very recent? It will take some time to come to terms with it all, but if you read some of the profiles on this forum you will see that many men have lived with this disease for many years. I have just passed the third anniversary of my diagnosis and I am hoping to be around for quite a while yet. So there is hope.


Chris's question is quite pertinent. Some radiotherapy treatments can be given every day for maybe 6 or 7 weeks. They can be very debilitating, if only because of the daily travel to the hospital for the treatment. I myself declined that course of treatment after discussing it with my onco, partially because of the potential damage it could do to my bowel (since I had a history of colitis) but also because of the number of visits that would be required to the hospital.


On the other hand, I have just undergone a single dose of radiotherapy to two separate bones in my spine. I was told that it was a powerful dose in each case, but the after effects have not been too bad. I have felt tired and quite often nauseous since having them, but I have been able to carry on more or less as normal.


As you quite rightly say, everyone acts differently to treatment, so I can't really advise you on whether to cancel your holiday (or treatment)  or not. Do you have a specialist nurse you can discuss his particular case with? That may be a better approach.


I hope you manage to get the holiday and I wish your husband well with his treatment.


Best wishes


Peter


 


 

User
Posted 10 Aug 2018 at 18:16

Hi Peter, 


Thanks so much for your advice. This has really helped us. We haven’t got a named nurse but I’m sure that we can ring the hospital unit. I’m also going to contact Macmillan for support too. We have a 14 year old boy and we haven’t told him too much. Unfortunatel, our family have had a 6 bereavements in the last four years and our son has been affected by this loss. My sister passed away unexpectedly at our house on Boxing Day. It’s been a tough time! 


Again, thanks for your thoughtful words and sound advice. 


Wishing you all the best and many more anniversaries, 


Vicky xx 


 


 

User
Posted 10 Aug 2018 at 22:24

Aw! Vicky,


That is so sad and I am really sorry you have had such a tough time. I really hope things start to improve for you very soon.


Yes, speaking to the Macmillan nurses is a good idea, as is speaking to the PCUK nurses (who may have more focused advice for you). I am sure you will be put in touch with a specialist nurse very soon, but in the meantime, both those organisations will be very helpful I am sure.


Just a thought, but are you sure he is going for actual radiotherapy on Wednesday? Usually, the first visit is for what they call radiotherapy planning. This is essentially non invasive and he shouldn't have any side effects at all from it. The actual radiotherapy would then follow a day or two later, but you could then ask them to delay the first appointment.


Whatever happens, I wish you and your family very good luck.


Peter


 

User
Posted 10 Aug 2018 at 22:39
If Wednesday is an appointment for palliative RT to one or more of the spinal mets, there may be no planning meeting beforehand and if it is intended to stabilise the spine then it is essential that he goes - you don’t want to risk spinal cord compression. A single zap should not affect your holiday and will usually reduce his pain almost immediately.

Call the oncology nurses at the hospital and / or the radiology department to clarify what Wednesday’s appointment is actually for.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2018 at 01:00

Thanks so much Peter and Lyn,


That‘s fantastic advice. Very much appreciated too. It’s so reassuring and helpful tohave this support  


Enjoy the weekend both,


Vicky and Laurence xx 

User
Posted 11 Aug 2018 at 23:35

Hi Vicky and Laurence,


Lyn is absolutely correct in advising you that your priority must be to stabilize Laurence's spine. And also that you need to know exactly why he is going for RT.


I can only speak of my own experience a week or two ago, when I was prescribed palliative RT to two vertebrae. I did have to go for planning beforehand, but maybe that was because they had to make a face mask for me to ensure they focused on the C7 vertebrae. I also had my abdomen tattooed (I'm 69 years old and just got my very first tattoo!!). So the planning appointment was mainly preparation.


I would add that, apart from some additional tiredness and mild nausea, I have so far not had any significant side effects. So, maybe the holiday could go ahead as planned, but please seek medical opinion on that before you go (PCUK nurses, Macmillan nurses or indeed your own hospital)


Best wishes to you both


Peter

User
Posted 13 Aug 2018 at 00:57

Hi Peter,


congrats on your first tattoo - made me giggle! 


Thanks for the help. Laurence is contacting the hospital today. He hasn‘t been able to make contact over the weekend because it was closed. We will let you know what happens. 


Take care my friend, 


Vicky xx 


 

User
Posted 15 Aug 2018 at 01:14

A little update. 


Laurence‘s appointment is to plan his radiotherapy. Off to Dawlish Warren we go! 


I really find this forum helpful, reassuring AND terrifying too. Laurence’s PSA is 5000 and I know this is horrendous now. He has had one iniltial degeralix injection (double dose) and then another injection a month later. He is due the next one on Friday.


Prior to his diagnosis he was in excruciating pain and lost four stone over a period of about 5 months. Currently, his back pain is controlled with two daily doses of zomorph. He looks so much better and has regained two stone in two months; normal food too - not any supplements.  His mobility is also greatly improved and he is far more active. 


We are doing as many nice things as possible and are lliving each hour as it comes. I stay up late into the night when everyone is asleep. That’s when my thoughts take over and I panic. 


God bless late night rambles xx 

User
Posted 15 Aug 2018 at 23:32

Hi Vicky,


Ramble on as much as you want or need to. It is a major function of this forum, to let us all "let off steam" and to voice those worries and concerns in a place where you know that they will be received sympathetically. I think we have all sought solace here. I certainly have many times.


Yes, 5000 is a terrifically high PSA (mine was 168 and that was considered frighteningly high) but in the end, it is nothing but a number. I think you may find people starting off with a PSA of tens of thousands, but they still respond to the treatments. It can come down very quickly and very dramatically. I am sure you will be surprised at how much it will reduce.


It is good to know that Laurence's pain is well controlled and that he has managed to put on some of the weight he lost.


I was on Degarelix for about two years and I have to say, I had a lot of trouble with it. But I haven't heard anyone else complaining about it. I guess it was just me! But once I started the chemo, I had to tell my onco that he had to stop either the Degarelix or stop the chemo, because I couldn't cope with both. He stopped the Degarelix and put me on to Decapeptyl (with some reluctance). I was told that Degarelix is the "gold standard" of hormone treatment, so Laurence is on the best.


I guess Laurence has had his RT planning today? I hope it went well and I hope that you now have a better idea of what it is all for and what is going to happen. I hope you feel reassured now.


So take care and enjoy the holiday. Try not to be too pessimistic. I am sure there will be many hours, days, weeks, months and years ahead.


Best wishes


Peter

User
Posted 16 Aug 2018 at 01:12

Hi Peter,


Thanks so much. I love reading your posts and your experience and thoughtful words really helps. I knew that degarelix was special because Laurence had to have funding agreed by NICE. but I didn’t know it was so fab - that’s made me smile and feel happy. Sorry that it didn’t suit you.


Laurence is scheduled for one radiotherapy zap treatment on 3rd September. The radiographer was so lovely. She gave us some good advice. I told her that we really didn’t want to know data, statistics or average time scales. I also told this lovely woman how I had ‘shut’ the oncologist down mid sentence, stating; “Please don’t tell us anymore. We like to live each day as it comes and bury our heads in the sand”. The radiographer reassured us that we are allowed to choose our own way. She said that as long as we accept and understand the diagnosis, which we do, then how we cope is up to us. I suppose I needed to hear this.


I have given Laurence the option to obtain more info/time scales etc but he doesn’t want to know these either. Sometimes ignorance really is bliss!
At the moment Laurence feels better than he has for months and so we are making hay while the sun shines 💥


Have a lovely Thursday,


Your friend Vicky xx

Edited by member 16 Aug 2018 at 01:13  | Reason: Not specified

User
Posted 16 Aug 2018 at 22:35

Hi Vicky,


Yes, Degarelix is quite expensive and not all health authorities will sanction it for that reason. It did work tremendously well for me too, it was the side effects I struggled with. But that is all in the past now.


I had the same treatment from the radiographer. She took my wife and myself into a private room and had a good chat with us about all kinds if things, including welfare, support systems and even gave me some information about getting a RADAR key (for access to disabled toilets). She also promised to chase up my appointment with the hospice and sure enough, a couple of days later, the long awaited appointment came through. (it is next Tuesday, the 21st). She even rang me up to check that I had received the appointment.


You are absolutely right. We are all allowed to deal with the illness as we wish. Personally, I want to know all the statistics, but each to our own.


What area is Laurence being "zapped" in? As you may know, mine was at two points in my spine. But please reassure him that there is absolutely nothing to it. As I think I have said, I didn't know they had even started, but they had actually finished!


I am glad he is feeling so much better. Lets hope it is onwards and upwards for him.


I am just going to update my main thread on Triton or Re-AKT. I had some disappointing news today, but rather than repeat myself, I will explain it in that thread.


Very best wishes to you and Laurence. I hope you enjoy the holiday starting on Saturday.


Peter

 
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