Rocco

Just reading this sad news. I’ve been away from the Patient Forum for quite a while.
As a Stage IV survivor since Aug 2005, I’d had email exchanges with Bubbles and often read her informative posts on the old mpip.org site and this one. She helped so many. Belated condolences to her family and all that knew her.

-Rocco
Stage IV in 2005, NED since 2009

Many years ago I was on the original Phase III trial for Ipilimumab (Yervoy) and lost about 1/3 of my hair.
Luckily, I had a thick head of hair, so it thinned out a lot but wasn’t too noticeable. It all grew back curly!
Hang in there!

Really great news, congratulations!

-Rocco

Mary –
I am so very sorry for your loss and all that you and your family has gone through.
May your loving memories of your Dad surround you and others during this difficult time.

-Rocco

All great suggestions noted and I’ve used Coolibar and others mentioned.  Many more brands, style choices and price points than there were in years past.  You may want to check out Columbia, Eddie Bauer, Duluth Trading, LL Bean as they all make UPF 50 /sun-safe shirts (button up/collared) along with T-shirts.  Columbia – esp their outlet stores and/or online sites – offer great sales.   If I’m going to be outside for a while I also put on a pair of light-weight (not hot to wear as they are ultra thin) Columbia brand UPF/sun safe fingerless gloves.  I used these trekking around Disney in the Florida sun.   I have a wide-brimmed Tilley (brand) hat that I wear – gives shade over back of neck.  Happy shopping!

Diagnosed Stage IV in Aug 2005.  NED since Feb 2009!  Hang in there!

No, you’re not alone.  The old format worked….ask a question, get replies.  MPIP.org was a lifeline for me after being diagnosed Stage IV in 2005…..used it daily to get answers, give answers and get hope.  A lot of people relied heavily on that bulletin board .  The profiles were extremely helpful to me – now they’re gone….and the new format is not well designed and painful to use especially for anyone needing to ask a quick question, find an answer and get the much needed support from fellow warriors and caregivers.

I would strongly suggest keeping your appointment.

Here’s hoping the histories come back – no way to recreate all the details since Aug 2005

Rocco

My sympathies for your loss. May your loving memories of your father surround you and all his extended family during this difficult time.

Hi –
I am so sorry that your husband (and you!) are having to go thru this. While I can’t personally attest to the combination (ipi + Nivolumb) you noted, likely someone else on this site can. Hang on to that hope and keep asking questions. This site was a lifeline for me when I was dx’ed at Stage IV on Aug 11, 2005 and throughout my treatments, surgeries and trials. Tomorrow marks my 15th year as a Stage IV survivor – I’ve had no evidence of disease (NED) since early 2009 after a full response to the Ipi trial I was on. Hang in there!

Rocco, Stage IV in Aug 2005, NED since 2009 – full response to Ipi (MDX-101 trial)

Way to go, Mike! Congrats to you!
Hang in there!

Rocco, Stage IV in 2005, NED since 2009

Would be interested in hearing more about the party for Dr. Allison. I’m alive today (NED since 2009) due to a Phase III trial (MDX-010) of Ipilimumab – before it went FDA approved as Yervoy.

Glad to see Charlie S posts – it’s been a while.   I get survivor’s guilt now and then as well.

All treatments and/or recommendations for treatment were through my team at Dana Farber. It is an amazing place. I hope the appointment(s) next week goes well.

-Rocco