Brain lesions

[kennetti]

My husband had a successful lobectomy last March followed by Chemotherapy

Yesterday he fell and the brain scan showed lesions

I am at my wits end

Any advice would be welcomed

Thank you

Pat

[Fifi24]

Hi,

I am sorry this is happening, if this is any help.. the stereotactic radiotherapy they offer for the brain lesions worked well for my husband, it kept the cancer at bay, as my husband had spread of cancer.

I hope and pray it works for your husband... please keep strong and remember it's ok to be angry, it's ok to cry...Also you are not alone as a carer in this journey...

also your husband is a diamond in your heart, you are going to be angry at this disease... you want to get the disease out of him and throw it away... they may offer steroids initially.. then offer the specialised radiotherapy.. unsure at this stage if they may offer immunotherapy?

If chemotherapy as not taken the cancer away...

What's important keeping both of you strong, physically, mentally emotionally... it's the biggest tested journey in both of yours life, but remember you have each other...

Hope, strength,prayers from my heart to you both.xxx

[kennetti in reply to Fifi24]

Thank you so much for replying..I feel my life too is coming to an end..futile I know ..I have children and grandchildren but Ian is my life

[Fifi24 in reply to kennetti]

Kenetti,

I know exactly how you feel... it's the hardest journey to face, but I pray from my heart, the treeatments stabilise your dearest husband's disease...

You are aloud to voice your feelings, we are all either on this journey been on this journey, either way it's a journey that no one ever wants to be on, it's horrific, it's pain is indescribable... but sadly we have come on to this... as wives we have to be the rock we never anticipated...

Unsure where you are in the world... but always an ear for you.xxx

[kennetti in reply to Fifi24]

Thank you so much for your kind words

[kennetti in reply to kennetti]

I’m in the UK

[Tcam]

Sorry can’t advise as we a step behind you. It’s a horrible journey to be on and to witness i feel your pain, anger and frustration. I can only send hugs. Take care of yourself it’s easy to forget about yourself when your the one doing all the caring. Be strong

[kennetti in reply to Tcam]

You are so kind to reply ..it’s nice to know I’m not alone

[Hidden]

Hi ,I had brain Mets diagnosed last year( after a right lobectomy 2015 and adjuvant chemo),treated with Stereotactic radiotherapy one high dose ,which has taken me a while to recover from I had a few other problems as well, I have had steroids to help along the way ,but I am now feeling a lot better .

So its not a brilliant discovery when cancer returns but if it is treatable, its doable and it will help to reduce the symptoms and get rid of the cancer or hold it off at least .I was terrified of anything going on in my brain and the prospect of anyone doing anything to my brain in case I changed in anyway ,all I can say is I am still me and have come through it all .so take heart it might not be as bad as you think . Good luck to your husband and fingers crossed all goes well it sounds like they have caught it early ,so it might be ok with treatment.Diane

[kennetti in reply to Hidden]

Thank you so much for your reply..you have given me hope Diane

We will fight this and defy the odds ..again thank you

Pat

[Tcam in reply to Hidden]

Hi there I’m so pleased your doing so well from 1 hit of radiotherapy. My mum in law is about to have 1 dose also. Can you give me a little more info about what happened after that. Mum in law is only 60 bless her she has had to move in with us as she’s very wobbly on her feet she has a few seizures and right arm wasn’t working. Met us on left hand side. I just need to prepare myself and the kids for anything that we may have coming.

Thanks in advance 😊

[Hidden in reply to Tcam]

Hi probably like your Mum I presented with seizures and initially after having the stereotactic raidiotherapy did well but when I came off the steroids I developed swelling from the treatment and a numb left lower leg which has caused walking and balance issues .

I think the swelling has gone down now,but I am awaiting a scan to confirm .I am still on steroids but a reducing dose ,I have gained weight 2 stone, which I am addressing with a diet .The steroids are like eating drivers your not even aware that your eating in the middle of the night as they keep you awake.

I still have a limp and walk with either sticks or a rollator which is really helpful for shopping and resting .I did get a lot of physio input please get that for your Mum .Where I live it is a self referral system which has worked well for me ,even got physio exerecise classes .I have hand rails installed to help getting about and I did purchase a scooter for tired days ,but mostly I walk everywhere with stick or stroller,dependent upon what I am doing at the time .Losing my driving license was my biggest blow but seizure put paid to that andI understand that. Life isn't as it was but I am still here doing what I can seizures are my worst fears and for the moment with Keppra medication are held at bay I have even booked a holiday in August in the uk but I am forward planning and I am still independent and looking out for my family shopping ect .I am 57yrs too young also to be at this junction but hopeful for a few more good years. It has taken me a long while to accepting that I am now disabled it has also taken my family a while to get used to it also ,I have always been active fit going to the gym ,swimming ,walking miles now everything has limits which is sometimes frustrating .However ,I am glad I did do all those things when I was well .

So things may be up and down for a while but should settle down eventually in time .It is 8 months since my intial SBR in May 2017 ,I don't think my limp will go ,but I accept that it is as it is .Good luck with everything and hugs to your Mum the treatment itself feels scarey the mask and radiotherapy she will need to rest straight away if she can ,I did have a tiny seizure after that and feel tired for a few days.Diane ,

[kennetti in reply to Hidden]

I wish you well Diane..we see the a Oncologist on Wednesday to see the results of the MRI scan and to see what treatment is available

To say we are scared is an understatement

If my husband progresses as you have done I will be over the moon..fingers crossed