Yervoy patients, please welcome me as newest member

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5/2/2014 4:12pm
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Replies: 6

Hi,

I am a 1 yr survivor of Mucosal Melanoma from my left nasal cavity. Surgery removed tumor, radiation burned my face, and now I am a survivor in Hawaii.

PET scans every 6 months, and now 3rd scan found metastasis in lymph nodes.

Onc wants to start Yervoy, and I meet nurse next Wednesday to discuss. I am a 42 yr old male father, husband, and full time employee. I like to research and know what I'm getting into with treatment.

This forum really helps to let me read others stories and experiences. Thank you!

I hope this immunotherapy shows a good response in my tumors!

 

Aloha!

If you're bored, take a look at my blog: marcuscancervive.tumblr.com

Hey Marcus,

While you are discussing the Yervoy option make sure you explore anti-Pd1 and some of the combo trials including it. I am currently NED after surgery and Yervoy as anti-Pd1 wasn't available when I was starting treatment as they weren't taking brain mets at that time. I think the anti-Pd1 results have been pretty spectacular and it would be worth exploring. If you can't find a way in now you can always take the Yervoy route and have anti-Pd1 as a plan B. Best wishes for a great response! 

Thanks! That is exactly my plan. Yervoy, and then PD-1, but PD-1 is not available in Hawaii yet.  I spoke to my 2nd oncologist at UCLA where I applied for a clinical trial, but was not qualified because my tumors are too small. RECIST 1.1 requires 15 mm and I am only 10 mm, so here we are.

Back in Hawaii with family and at home about to start Yervoy, should I be unsuccessful, or not tolerate, I hope to go back to Los Angeles for some trial with PD-1. And maybe someday it will be on expanded access here in Hawaii.

Thank you again for your repsonse and alerting me to PD-1 as a plan B!

 

Aloha!

Hello Marcus,

I wish you much luck with your journey and just wanted to let you know my husband was a Yervoy responder.  He was stage IV and started the clinical trial of Yervoy and GM-CSF in March 2011.  He became NED in October of 2012 and remained in the trial on maintenance doses every 12 weeks after the inital 4 in 12 weeks.  He dropped out of the clinical trial in December 2013.  You can read more on him in his profile.

Good luck,

Judy (lving wife of Gene Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Thank you Judy for your reply and support! Good to hear Gene is NED, I hope he stays that way!

Aloha,

Marcus

 

Hey Marcus,

Good luck with the Yervoy.  As you probably have found out on your own, many tolerate Ipi quite well.  Hopefully you will be in that group.  Probably the most common side effect with Ipi is fatigue.  There has been some pretty severe fatigue reported but I think that's not common.  I'm sure you are aware of the colitis side effects and the importance of staying on top of diarhea.  One side effect that I try to tell folks about is the hypophysitis side effect.  Basically that is another autoimmune side effect where the pituitary gland becomes inflammed and swollen.  In my case in started as what felt like a mild sinus infection but over the course of a couple weeks became all over my head and quite painful.  The problem with this side effect is that in can cause permanent damage to the pituitary gland so you want to catch it early.  Let your care givers know if you have any type of persistent headache lasting much more than a day or two.  I would recommend drinking lots of water to reduce the possibility (or at least help in the event of) liver toxicities.  I think you have a good plan of trying the Ipi first and if that doesn't work move onto PD-1. 

Take care,

Brian

Thank you Brian for all the tips of what to look out for during Ipi treatments. I got the packet from the Yervoy website, and that has the side effects listed on many pages.

But hearing it directly from you with even more details is helpful! Thanks!

I am hearing about expanded access to Merck MK3475, and that is good news. Currently, PD-1 is not available in Hawaii, as of yet! My doctors are talking about Compassionate Care possibly, after we see how I respond to Ipi. First things first, I guess!

Aloha,

Marcus