Update on my mum with stage IV NSCLC

Update on my mum with stage IV NSCLC

Hello everyone sorry I haven't posted in the last couple of months but I've been very busy with caring for mum and I kind of got bogged down in everything and loosing focus as well as hope, I wasn't coping very well for a while trying to keep my emotions in as mum said she didn't want to see me cry and she needed me to be strong for her. It felt like the cancer was consuming me as well so I've been doing some relaxation techniques and feel much better in myself and better able to cope.

Since my last post about 2 months ago things have moved very fast from mum being pretty sick to her words yesterday "I feel really good"

In January mum was admitted to hospital suffering pain and blood in her urine, after tests were done it was discovered that she had a kidney stone and that she was anemic nessesitating a blood transfusion, mum was released about a week later from hospital feeling a lot better and more energy.

Monday 16th January mum visited her oncologist and he said that he thought perhaps it was time to think about chemo because 2 of her lesions that had fungated on her chest wall were becoming pretty troublesome and hadn't really responded to radiation but he still felt a bit uneasy about it.. I asked if there was any other treatment options and that I had been talking to you wonderful people in America on this site and that I'd been learning about immunotherapy.... He said they did have a program running last year that was free for patients till cut off in November of last year, that treatment is Nivolumab (Opdivo) He went and spoke to his oncology nurse while we waited in the room and he came back and said it was still open but the drug company had a criteria where it was only free if you were a stage IV and had tried chemo, mum hadn't had chemo but he said he'd tell a while lie to the drug company to try get her in. We asked questions about side effects and they seemed to a be better option than chemo, so we said we'd give it a go if approved.

A week later we got the call saying she was approved.

Mums first treatment was 3rd February and she tolerated the transfusion well, within a week I noticed a dramatic change in the lesions, I couldn't believe it! Mums second treatment was 17th February and she's still tolerating treatment with no side effects and the lesions are shrinking further I can only hope it's doing the same for her other mets internally.

I'm just hoping that mum doesn't develop any side effects, as I've read that side effects can sometimes happen months after treatment, some serious ones.

Anyway that's about it for now and I'll be posting updates on mum when I can.

I wish everyone well and hugs to all


PS....I thought I'd put a pic of mum on here, I hope that's ok. I'm not sure if I can post pictures of mums lesions on here as I don't want to upset anyone but I thought it might give hope to some to see the dramatic change she's experienced since treatment has started.

6 Replies

  • Hallelujah ! I don't mind you posting shrinking lesions. It's a good thing😊 I'm so happy for you and mum. Keep fighting

  • Hi Texas64, thank you and yes it's gave mum some hope to keep fighting. I've posted a pic of the massive changes we've seen happening from the outside.

  • Is great your mums getting treatment that works AND is doing so well.

    Most immunity drugs would make you sick BUT am sure not as sick as conventional treatments.

    Think that Zoe women is having same treatment BUT not 100%


  • Hi JeffAjaxSmith, yes it's wonderful results so far.

  • Cheers and don't forget look after yourself :)

  • Annette your mom is looking good,i'm glad you were able to get the opdivo. Ihope she contnues to get better. Hope to here from you soon. Your taking very good care of your mom. Isn't there someone to help you. if not you need to take care of you too if you don't you'll be down so please take time out for you. Jo

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