Hi I’m new to reaching out

Nan23 4 months ago

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I was diagnosed with kidney cancer with a large tumour on 28th October. I was 65 then played golf 2/3 days a week did yoga/meditation 3 times a week and looked after my wonderful grandsons -after school whilst mum and dad worked.
kidney removed tumour 14cm yes 14!! On 19th December.
Not the easiest after surgery I had complications but got home for Xmas eve to be totally spoilt .

after Xmas tumours on lungs discovered and started on immunotherapy. Life was good still. After fully recovering from the surgery I was back doing yoga/golf.
boys still popping to nans after school .

Then the blip. !!
Huge adverse reaction to immuno . Attacked my adhrenal and pituary glands. Rushed in to hospital and I severy treatment for a few days. Had birthday there age 66. Told I was a senior citizen as I could draw my pension.

I thought I’d get back on the immuno. Soon but no , consultant rather concerned so on oral targeted drugs. Now a shadow on vertebrae. Waiting for results of MRI

at the beginning of all this I thought I would breeze it and back golfing. I can’t manage long walks and nervous about yoga. Does anyone have had experience like this and can give any info to make me feel more positive . Sending hugs to fellow cancer sufferers.

Lenasilva 4 months ago

Hi Nan23,

I don't have experience with that type of cancer, mine was breast cancer. I'm a nan too, and kids very supportive throughout my treatments and everything. I'm just wishing you keep positive and somereatments are very harsh in the body, hopefully after a while you'll start feeling better. All the best

Candysmum 4 months ago

Hello Nan23

I'm sorry to read of your experience on the immunotherapy. If you click on my username, it will take you to my profile. This will give you the information you are asking about. You could fill in your profile too, so that you don't have to keep repeating yourself when you post! I have requested that you 'friend' me, so that we can private message each other.

There are one or two other people using this forum who have also had similar 'adverse events' whilst on immunotherapy. It is very unfortunate that this has happened to you, as it is one of the rarest side effects, I think one in 10,000 are expected to experience this.

It is 18 months since my pituitary gland, and adrenal glands, stopped working. I am still here, still leading my 'normal' life, and able to do pretty much anything I want to....so do not give up hope Nan23!

i decided to stop the immunotherapy after a second very rare side effect, and I have not had any treatment at all for nearly a year now. i have regular scans to monitor my tumours, and they have remained dormant and stable. I might consider going on to other cancer drugs should my situation change, but I'm happy with the way things are for now. The fact that my cancer has remained stable is an indication that the immunotherapy has worked, and continues to work. It may well be the same for you. It does continue to work after you stop taking it.

You did have major surgery back in December, and it can take quite a few months for your body to fully recover. Do everything in moderation, listen to your body and don't try to do too much too soon! I'm sure you will be able to walk for longer distances if you build up gradually. I can't say anything about yoga, and whether it is advisable to do it, as it is decades since I practiced it! You could seek advice from an experienced yoga teacher, or a physiotherapist, if you are unsure about starting again.

Do keep posting! You will get lots of support and friendship from others on here!

Best wishes

Candysmum

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