my sister – a treatment update | some reflections

Hello and best wishes to every member on this board and their families.

I thought an update on my sister might be mutually helpful. Here's a quick rundown:

– started on Taf/Mek combo in Feb. – I posted then about fevers and other side effects she was experiencing

– she actually only lasted 2 weeks on a full dosage before side effects caused interruptions to treatment >> tried everything – dose reductions, stop & treat with steroids then resume again trials, Taf only at half dose, no Mek – none of that worked  

– the culprit that ended treatment was the rash she developed – a grade 3 and also considered an allergic reaction  (rashes seem particularly complicated) – her rash also did not respond to treatment, none of at least 3 creams they tried, anti-itch drugs and then heavy Prednizone 

– flipside of that is that the drugs were amazing – they were absolutely causing the mel to retreat and disappear – we were devastated when she had to stop but the plan then became to start her on ipi/nivo combo asap

– 4 weeks later, first signs that mel was on the move again became apparent

– 5 weeks later, first CT scan and, even with new growths appearing rapidly, her doctor was thrilled with the results as they showed huge reduction in the previously known tumours – there were new ones also, several smaller in her liver, (one bleeding in her kidney), one old that was larger (lung)  

– good news was that CT results did not reverse plan to start immunotherapy

– first infusion was last Thurs. (Apr. 14) – she was immediately extra fatigued and slept on and offer for the remainder of the day

– day 2 fever and headache (using acetominophen), appetite really dropped, some nausea (takes odazetron)

– has remained as above since, on and off – headache, fever, vomited today but this was only day 6

– several of her growths went crazy for a couple of days but one has already started going down again – have read on here that it's quite common – they are sore and painful though

– so far no rash, which is great!!

– I know it's early days yet – treatments are 3 weeks apart, first 4 with the ipi, then onto just nivo — we also won't be surprised if she isn't able to complete all four 

She is really down about her syptoms but I believe it's evidence that the drugs are working. I am so thankful she is able to get this treatment and I have every confidence that she's going to have a great response!! I often wonder about the Taf/Mek >> if she might not have been a "complete responder" if not for the rash/allergy. 

If anyone has any suggestions on how I can keep her spirits buoyed, I'd welcome them! It's not so much that she's experiencing side effects – what really has her down is the overall effect of bad, aggressive cancer followed by aggressive drug treatments – she went from being an active gym member last fall to the point where she was issued a walker last month.

In just a few months, tumours invaded all skin levels, many bones and multiple organs, treatment kicked ass, which one doc told us made your body feel like it was "running a marathon" but then caused extreme side effects, steroids caused extreme and rapid muscle loss, her energy level went from pretty good to almost 'nil. She's very limited in what she can do and where she can go … and sick and tired of being sick and tired … 

Onto some reflections … I've been on here all day – it's just that kind of site where the knowledge-bank can keep you for hours. It's been my number one source for everything I have learned about my sister's condition. I think I would be fearful for her all the time if it wasn't for the material I read here.

A couple of posts struck me today – one from Janner about being Stage 1 and still continuing to post and another discussing the new 5-year OS results just released.

The "resonance" of these two posts hit as I was deep in my research efforts and reading posts that were made back in 2011 and 2012 … and it dawned on me that none of the names of the posters were familiar to me. I actually found myself going to the profiles of some of these people and looking for updates .. and finding nothing. I cried a few tears over this today …

I'm so glad people like Janner continue to post. I wish others did, if they are still out there (Ed in Ottawa – I read everything you post – thank you!!). And I'm really grateful that, if mel had to invade my sister's life, it happened now and not five years ago. It does seem that hopes and promises are turning into reality.