@thecruisemermaid
Forum Replies Created
- Replies
-
-
- April 4, 2022 at 10:32 am
*Thank you all* for your beautiful words and your beautiful thoughts of encouragement. I miss my dad more than anything words could ever describe. There isn’t a moment of any given day I do not find myself thinking about him – and wanting him back. It is such a struggle to have to “wait” for the day I see him again – I want to see him NOW. I (and the rest of my family) are just trying to get through each day – one day at a time. It has been a great pleasure to share my dad’s journey with you all – and again – thank you for every kind word! -
- March 23, 2022 at 3:47 pm
HELLO MAX! I am new to these forums, and I just posted a long, long post about my father’s five year journey with Melanoma. (Sadly, we lost him in October of 2021). We – like you – were with the University of Chicago. (We were with Dr. Rampurwala – out of the Orland Park, Illinois facility). I had often thought about reaching out to the guru at UOC – Dr. Gajewski – but I never had – and I would THINK that being a University Hospital – that they were all in discussions about the cases etc.)I hope and pray that your wife can beat this! I know your fears, I know your struggles – but one day at a time, and one treatment option at a time and living every day like its the last is the best advice I can give.
When you note that your wife seems 100% fine – that is exactly it! If no one told you or her that she was “sick” you wouldn’t believe it! That is how it was with my father! You would never ever know that there was this beast inside causing all this harm. Its so sad and so unbelievable.
I also wondered if it would be of any benefit to look into places like MD Anderson – or Mayo Clinic – but I honestly have (had) the utmost faith in the University of Chicago. EVERYTHING I spent HOURS researching on – the UOC and our wonderful doctor – we right there on top of. The one thing I always asked our doctor was about that Interferon- or IL-2 those immunotherapy treatments – and I guess those are super old (in today’s standards) and have super high risks and the newer immunotherapies have so much more favorable results – but at the same token – I’ve seen stories where people have made it 10+ years after having those older immunotherapies so that has always been in the back of my mind ….
I also wondered if even though my dad “failed” an immunotherapy IF we could return to it later – like just to try it again – and the answer has always been “no” from the doctor. I guess they feel that once the body has responded to it – and then stopped responding – we do NOT go back. (Although again, I’m not sure I like or accept that answer – but it is what it is ….)
My dad was able to have a response to the targeted therapy BRAF/MEK for about nine months (and this was after a first line treatment in 2018 of Keytruda, then after about 10 months and some progression we did the IPI/NIVO combo for 4 cycles and then stayed on Nivo for almost another year before progression – and that’s when we started the targeted therapy). It was after we progressed on the targeted therapy that we had no choice but to go to Chemo / Radiation.
I hope and pray your wife can beat this, Max – you will all be in my thoughts and prayers. If you don’t mind me asking – which doctor are you seeing at UOC ?
-
