Immunotherapy treatment

Hi Steveb4793

I'm pleased to see that you've joined this group after I pointed you in it's direction from New to the Community. I'm sure you'll get lots of support and, in return, be able to help others with kidney cancer. Feel free to join in with any existing posts by clicking on 'reply' at the bottom of the post you want to respond to.

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hi Steve 

I have just found your post and I wanted to ask you a couple of questions.

my husband is 45 and last year was diagnosed with kidney cancer that spread to his arm (bone) and a few small nodules on his lungs were also discovered.

he's s been on targeted therapy since June last year which so far has been working for him- some of the nodules have gone, the primary tumour has shrank - generally  he is stable and gained his weight back. the side effect are pretty tough sometimes but so far he managed to deal with it ok.

Recently he's been having some increased nausea and some issues with his vision and his consultant has asked for a brain scan which is hopefully going to happen next week. he is super stressed (so am I) and really panicking...

I was wondering what sort of symptoms did you have, what is the Gamma knife treatment, is it through NHS?

I really hope they won't find anything but I want some info just in case so I can support him the best I can...

thank you

H

This is how my brain surgeon explained the gamma knife treatment to me. 'If I gave you a magnifying glass on a sunny day, you could focus it and burn the hospital down. What we are going to do is focus radiation on the mets in your brain in a similar way which should destroy them.' 

It was an NHS treatment. So far it has been amazing. It wasn't the most comfortable experience but it was interesting and can be done again. Would I have it done again? You bet, but I'd take my own sandwiches. 

Louise

Hello Steveb4793,

Welcome to the group, you certainly appear to have had more than your fair share of procedures.  I was in full time employment for a while after being diagnosed with metastases but eventually found I was putting all my energy into my work and was getting home and falling asleep and getting no time to do my jobs at home or spend any time with my family.

I checked out my retirement options and the best thing I did was talk to the Macmillan financial advisor.  I learned that I could apply for medical retirement which due to my circumstances would credit me with the extra years of pension that I should have worked paying me as if I had worked to 67 rather that the mid 50's I actually was.  Together with my entitlement to Personal Independence Payments this means that my current income is actually a few pounds more than I was taking home for working full time.  At that point for me it became an academic question.  Whilst I enjoyed my job I was working to earn enough money for me and my family to enjoy our time together.

It took a couple of months to sort it out but I have never looked back.  I still retain the social aspects of work (or at least until we went into lockdown) and meet my ex-colleagues regularly for drinks on a Friday after work, a regular fortnightly lunch date with another and being a member of a What's app group which chats via texts.  I now have plenty of time to do the jobs at home that kept getting put off, it doesn't matter that it takes a bit longer.  I get to spend quality time with my family as not all my spare time is spend doing essentials like shopping or household chores.  I don't have to worry about having to book time off as I am always available and can simply plan trips and activities around my wife's work at college and my son's school timetable.

It was definitely the correct choice for me and as one of my friends in the incurable group says I've never heard of anyone on their death bed saying "I wish I had worked more".

If you wanted to speak to a Macmillan financial advisor ring the helpline on 0808 808 00 00 and they will put you in touch with one.  I can't recommend them highly enough.

I see that you have already found the threat relating to your treatment and please feel free to joion in any of the discusions or start your own as you have here.

Wishing you all the best,

Gragon 

Thank you Louise, it helps a lot to hear that.

best wishes

H.

Hi Gragon

Thank you very much for the reply and advice, since I started the thread I received conformation that my application for ill health retirement from my present employer had been approved by their independent medical assessor without me needed a face to face assessment, this was done by consenting for them to see my medical notes and a written report by my oncologist, I am waiting for the valuation to come through but I believe I will receive the equivalent as I would at state retirement age.

once I know what my income will be I will definitely contact Macmillan financial advisory with my options.

I have been off work since mid November so am now getting used to not working and I feel my health has benefited as I worked a combination of 12 hour days and 12 hour nights which is hard going even for the fittest person so getting used to been retired should suit me.

Thanks again

Best Wishes

Steve

Hi H

Hope you and your husband are well, my brain tumour was diagnosed after going to the doctors one morning with numbness on the right hand side of my face, as a precaution they sent me to A & E to see the stroke team, they ruled out a stroke straight away but sent me for a CT scan, the results came back a week later which showed a small growth so they did a MRI which confirmed a tumour, by this time my face on the right had become totally numb and I had started with severe headaches, a second MRI showed the tumour had grown within 10 days which confirmed it to malignant and most probably metastatic renal with my history.

I was referred to specialist unit although private they worked within the NHS trust who carried out the Gamma knife procedure, this is done by radiosurgery where a concentrated beam of radio waves are fired at the tumour to kill the cancer cells, my most recent MRI scan shows no further growth so they are pleased it appears to have worked.

As I mentioned in my profile I am now on immunotherapy to suppress the cancer cells 

There is an interesting article on Cancer research website if you search for 'Gamma Knife' and one on Macmillan.org which explain the procedure.

Best wishes to you both

Steve