Devastating Setback - Please Help

I’m sorry to hear your news. My partner went through something similar only to be told hours before the gamma knife surgery that it actually wasn’t cancer but white matter that had built up from the immunotherapy treatment they had received previously. It’s devastating news to hear when previously you have been told it’s going relatively ok. I can also relate to this as my partner was told that they needed just some radiotherapy and went for an appointment to sort this out only to be told that the melanoma had spread to their lungs and they had six months to a year life expectancy. We are fighting hard and so far the immunotherapy has been successful. I wish your family all the luck in the world. Take care

Hi Duke,

Thank you for replying. That must have been such a roller-coaster for you and your partner, finding out just before the gamma knife that it wasn't actually cancer. I'm so pleased that your partner has had a good response to treatment, and I really hope it keeps working for them. For us, I think it's just such a shock and has really given us whiplash after the good news on Monday. We haven't had the radiographers report yet, so I'm going to hold out a tiny bit of hope that the scan has been misinterpreted. We're so sure the treatment is still working in the rest of my mum's body.

Thanks again, and take care.

Pip x

Hi Pip

So sorry to hear this about your Mum, after having read your previous post with her scan results.

My partner had his 4th dose of Ipi and nivo on 4 Jan, and his scan results have shown a reduction in some lesions, with some swollen possibly due to inflammation from the ipi/ nivo, and will hopefully subside. He has a consultant review next week, to plan the nivo maintenance dose. He has been told that the next scans will provide  better details of the lesions. It is very worrying waiting from scan to scan, but we just try to get on with things week to week, and stay positive.

Hopefully your Mum will get some better news,  take care.

Margyy

Hi Margyy,

I'm so glad your partner's had some reductions as well. I really hope you get even better news on the next scan, and hopefully nothing like what's happened today for us, although I think my mum's very sudden progression out of nowhere must be quite rare.

You're right about living scan to scan, it's so tough. We're going to do our best to stay positive too, no matter what.

Best of luck to you and your partner with everything,

Pip x

Just wanted to post an update. Today my mum has spoken to her oncologist and the radiographer's report has revealed that this isn't in fact a new tumour. Instead, one of the three lesions already in her brain has grown slightly and become very inflamed. The oncologist thinks this is probably psuedoprogression and a sign that the Ipi/Nivo is working really well, but we won't be able to confirm that for weeks if not months. So much better news today but still very shocking. My poor family has had such a rollercoaster of a week.

Hi Pip

Pleased to hear your update, inflammation of existing tumours after Ipi/Nivo is the same response that my partner has had, and to wait until his next scans, after starting nivo on its own for a few months, for the next results.when hopefully the inflammation subsides.

Keep posting updates, it provides us with hope that the treatments are working well.

Best wisges to you and your Mum

Margyy

That is good news, it’s really helpful to hear how treatment affect different people. Best wishes to you and your family

Hi Pip, 

Wow this is really bizarre. I read your post a few days ago and now nearly the identical thing has happened my partner. 

He previously had 4 x brain lesions almost a year ago that were treated with CyberKnife + Ipi/Nivo and has been on maintenance Nivo since last summer. The last brain MRI in Nov showed complete response with no evidence of any active disease left. He had a full body Pet CT last week which also showed complete resolution of a previously active lymph node. We were so thrilled with these amazing results. He had his 3-month surveillance brain MRI last weekend and in the appointment today they said the report said there was a 'new 5mm enhancing lesion' in the frontal lobe which wasn't there 3 months ago. They said it's very small and needs to be discussed next week at the Neuro MDT - it might be inflammation but does look suspicious for a new lesion. I'm devastated. This could be the first sign that the immunotherapy isn't working anymore and terrified they'll switch him to targeted therapy which has much less durable results. Hoping and praying it's just a bit of inflammation or artefact. We'll find out next Tuesday. I hate this rollercoaster and want to get off. 

Hi GoodVibes,

I'm so sorry to hear this - the whiplash is just appalling, isn't it, when you have good news and then bad. I really feel for you and your partner, and I'm crossing my fingers for you both that it's just pseudoprogression or white matter leftover from immunotherapy. I did read a story over the weekend - I was researching like crazy after we got the awful news on Friday - about a man who's been stage 4 for nine years. Immunotherapy and targeted treatment has kept the tumours in his body stable but he keeps getting brain lesions periodically and has them gamma knifed or removed with surgery. It really gave me comfort to know that some people do live with this horrible disease for a really long time, even if they can't stop it progressing.

I'll be thinking of you and your partner, especially while you wait for more news.

Pip x