Hello all, quick run through of our road so far. My lovely mum was diagnosed in Dec 2020 with SCLC extensive, mets to lymph nodes, adrenal gland, liver and bones, all the left side.
Mum started chemo in Jan, Carboplatin and Etoposide with Tecentriq. 4 cycles of chemo and mum did so well, she had some tough days, but got through them. Pet scans were great, shrinkage of lung tumour and mets, so Tecentriq was continued every month and mum was doing well, all her hair grew back with chemo curls and no issues with the immunotherapy.
However, mum had a pet scan in August and was due her 11th immunotherapy treatment, but there showed some progression in her chest area and they stopped the treatment. I had noticed some small changes too, her balance, so asked her nurse if we could do a brain scan, which they did. We met with an Oncologist this week, I will be honest, I didn't like her! She didn't appreciate my questions which were general ones, she cut me off and I just got a gut feeling from her. I don't feel she is going to fight for my mum, I feel we are just a number. She was quite rude.
So, we were told there has been progression in the thorax area, so mum started 2nd line chemo today, Carboplatin and Gemcitabine. Sadly, there has also been progression in the brain and there is a 1cm deposit which is the reason for the balance issues as it's in that area.
There was talk of radiation therapy to chest and brain but we have not been given any other information, whether we will see a radiologist, just no idea.
During the meeting,i asked if mum would be offered any other immunotherapy and the onc bluntly said 'there are no others' but I question this as I know other people have tried different ones to find one that works better. We have also been advised to find a new Oncologist from fellow SCLC patients, but I don't really know what to do?
I want the best for my mum, she wants to know as little as possible, so I have to be her voice.
The brain mets are a new road for us, so if anyone has any info, advice or experience please do share them with me. We are trying to get as much information as we can. WBR experiences, good or bad, is it worth it because of side effects?
Also, has anyone else had, tried or been offered another immunotherapy? Would be great to know.
We are not sure what this next part of the road has for mum, I won't lie, i'm scared,much more than when we got her diagnosis. Mum was given the standard 12 months to 21 months. We know these are quite old statistics and people do well. Anyone diagnosed with this horrible disease, don't give up! I never knew how strong my beautiful mum was until we faced this with her. It's hard on the road together, but one i would not let her walk alone.
