new to stage IV

[ursula]

hi —

I posted a few times on the stage III forum last year, but haven’t visited the site for a while.

(It looks beautiful! I think the graphics are different?)

I took Interferon briefly in 2012, but had an adverse reaction and couldn’t tolerate it for long.

A few weeks ago, a follow-up CT showed several abdominal metastases (in my pancreas, adrenal & abdominal wall). The MRI of my brain was clear.

So — we’re reeling from the news. We have three sons aged 2, 4 and 6, and that’s making it extra hard. But we’re trying to regroup and keep going.

I need to have the MRI & CT’s repeated in the States (I’m Canadian) before entering an ipi + nivolumab trial. They’re tentatively holding the spot — it’s at Sloan-Kettering in New York — but I’m praying that this second MRI next week doesn’t show any brain mets so that I can still access the study.

I’m so heartbroken about the disease progression, but I’m looking forward to being part of a community here.

-ursula

[Celeste Morris]

So sorry for the heartbreak I know you are going through. My kids were not as young as yours when I started down this path…but too young for me to deal with easily. Hang in there. The trial you are considering, has shown good results so far. Wishing you the best on your scans and with the trial. C

[gostan]

Ursula, it is difficult for me to imagine your angst with 3 young children and your having to deal with this awful disease. But as Celeste notes, the results with the ipi & nivolumab trials are really great. And you are in great hands and minds at S-K. Dr. Hodi, my onc @ Dana Farber is convinced that over the next several years that these new therapies will translate into long term maintenance of our melanoma……and this was not even a thought 5 years ago. Best of luck with your rescans moving forward.

[Catherine Poole]

Welcome Ursula and I know you will find the support you need during this stressful time. You might want to read our blog by our advisory board expert (psychosocial oncology expert) about talking to your children, it has some great tips: http://melanomainternational.org/2013/07/talking-to-your-children-about-cancer/#.Ue5mzXbD9Ms

I agree you are headed into a great trial that is very promising. We are always here to guide you should you need additional advice or direction, either by the forum or by calling our helpline. Wishing you all the best. (and thanks for noticing our new website)

[erinmay22]

sorry to hear about the move to stage 4. I have been a patient at Sloan for almost 3 years now. I am in their Merck anti-pd1 trial. I already did ipi prior to getting in to the trial so I’m just getting the pd1 drug.

Hope it all goes well. There is a great team at Sloan. If you have any questions about them/the process let me know!

Erin

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