Radionecrosis

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Hi Everyone, 

I am just wondering if anyone is or has suffered from Radionecrosis ?

My husband has stage for 4 NSC lung cancer with secondary in the brain which he has been treated for twice by surgery and Radiotherapy , he is now scanned every three months , on the last scan they initially thought that a tumour had appeared again however upon further investigation the doctors think it's Radionecrosis , our consultant is away on holiday and i am keen to know more about it . I haven't found any information on Mcmillan but have found other websites with information however its hard to pick through the facts other than its a side effect from radiotherapy would could evelop many years after treatment .

My husband is really well with no side effects which is brilliant but i am so concerned about this recent development 

If anyone has any information i would really appreciate learning about your experience , the good and the bad 

Thank you in advance 

Fran 

  • Hi Fran 

    I am having further MRI scans this week to double double  check for radionecrosis Vs cancer spread. My brain mets is from stage 3 T3 N2 M0 Oesophageal cancer 2019. Had chemoradiotherapy 2020 declining the surgery for Oesophageal cancer in  2019 after FLOT chemo treatment. diagnosis of brain mets Feb 2022. Surgery April 2022 to remove one lesion then cyberknife May on the other 4 and again Sept 2022 on  two new small  lesions . I have numdness down my left side from Jan 2023 from radionecrosis but I am still working and playing golf. cyberknife works it seems but does cause radionecrosis in my case which radiologist find difficult to differentiate on the April 2023 scans. So for me it’s a case of getting on with daily life , plenty of rest , oxygen and good nutrition. I am on 2mg steroids and 500mg Keppra and take curcumin and PomiT each day. Cyberknife seems to work well, my oncologist is looking after someone for the last 10 years who has cyberknife so I have my fingers crossed. If your husband has no side effects that’s good news so the pair of you keep on doing what you are doing each day and enjoy - radionecrosis is probably the answer. 

    John

  • Hi John , wow you are doing so well and enjoying life . 
    Hubby has had surgery to remove the first brain tumour then whole brain radiotherepy , tumour came back so targeted radiotherapy came next . He is still on immunotherapy  , brain tumours are secondary to lung cancer , lung cancer has been clear for 3years , we are in the same mindset as you, enjoy life Sunglasses

  • Can I also ask John if you are allowed to drive a car ? 

  • Have not driven since Feb 2022 - my wife drives us both round the bend daily RoflRofl I have learnt to stop trying to find the left hand break and saying “Jesus” as it appears he is busy elsewhere  - we drive to appointments in the car as it’s usually exhausting afterwards - so without my wife it would be very very difficult and a totally different ball game - she’s a saint - Had a stroke Jan 2023 and got a blue badge which helps a lot - prior to that it was a nightmare- we live in London with buses at the end of the road - which is a great help - it’s odd being disabled but not appearing to be disabled and people just barge into you - I have become Victor Meldrew when I am out walking - you have to adapt , get plenty of rest and try to laugh it off but it’s no picnic at times - you have to manage the fatigue - both parties  - fatigue is my weak point which the occupational health person made me realise - as we still think we are 21 

  • Hi Wave tone1 

    It’s inspiring to read your communication John. I like your get on with life attitude. I have been diagnosed with secondaries in the brain after a melanoma was removed in 2021. Cancer has spread to several organs but the brain area is the most worrying. I am responding to D&T treatment for elsewhere but believe that doesn’t help in the brain.

    I find not being able to drive very frustrating & limiting. 
    family are helpful but have busy lives with children. I’m Granny! I am active & pre diagnosis played sports. Will this be possible still or is it causing harm? I have also been warned not to ride a bike but wonder whether I can if careful & on cycle paths. 
    I must check out with nurses but I wondered what symptoms you have experienced? What should I look out for?

    it is good to read about others it somehow feels less isolating. 
    i wish you all well

  • Hi 

    I have numbness down left hand side and cannot cycle I fell off the bike on Thursday and ruptured my right Achilles as I am on steroids which weaken tendons apparently - had issues since end of August - I played golf out of a buggy on Saturday but my balance is difficult 

    so you have brain mets - is that a number of lesions ? 

    had Cyberknife may and Sept 2022 and have developed radionecrosis from about May 2023 BUT I am going to get Hyperbaric Oxygen next week (work of prof Philip James Dundee NHS  9 Wells Hospitsl) Whipps Cross and MS Action also do it and various NHS places 

    I also do Mistletoe and have NED in my body only in the brain which I cannot explain from the Doctor and Oncologist 

    i am also taking supplements NAC  Nanokinase Bromaline Turmeric CoQ10 Vit C D E  Collagen Magnesium and zinc and a Vit B complex also Pharma Steroids Dex and Keppra 

    Imho Keeping fit is the most important thing - I am losing fitness I had a year ago that and using a stick to get around now

    I would like to do some weight training too just simple exercises but keeping fit is good for mental health as well 

    I have a feeling that we can overcome the brain mets with understanding the use of peptides just researching as there is a 3rd round of RCTs going on in Texas and the Doctor running it has done it for 40 years just now getting FDA onside 

    and on the nutrition front good oils in the system help the brain - flaxseed (use a coffee grinder to get the best from them add it to your breakfast cereal  - avocado- oily fish - I also looked at the Budwig diet - check out Prof Robert Thomas How to live who aslo did the PomiT RCT  which I also take 

    that’s what I am doing at the momen

    happy to talk anytime

    john