› Forums › General Melanoma Community › Yervoy medication helpful??
- This topic has 26 replies, 10 voices, and was last updated 6 years, 7 months ago by Happygal.
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- September 28, 2017 at 3:31 pm
Your Oncologist should be aware of the new research which points to benefits of PD1/PDL1 immunotherapy over Ipilimumab in a stage 3 adjuvant setting. Ask them about this. Ipilimumab has saved many people so I’m not saying anything bad about it.
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- September 28, 2017 at 4:06 pm
From my understanding the new drug is not yet FDA approved is it? My husband is Stage 3b and had to stop after 3 infusions due to toxicity.
Donna
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- September 28, 2017 at 4:47 pm
Hey newman I am starting Opdivo tommorow for stage 3b melanoma.
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- October 16, 2017 at 2:42 pm
The same thing, 4 times, every 3 weeks one infusion of Yervoy 3mg per kg. -
- September 28, 2017 at 4:48 pm
From what I understand I am one of the first ones to get it for this application.
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- September 28, 2017 at 7:31 pm
To get Pembro/Keytruda or Nivo as a stage 3 patient you can decline surgery, or if you have had surgery then you would need to take two steps: #1 show your doctor that there is research supporting Pembro or Nivo as providing greater benefit than Ipi in a stage 3 adjuvant setting. #2 your doctor will then need to convince your insurance about the benefit of Pembro or Nivo compared to Ipi. This is not a certainty but it is an approach which has worked when the Oncologist jumped in and pushed for it with insurance.
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- September 28, 2017 at 4:25 pm
I was stage 4 so the side effects were no concern for me. I had 5 yervoy/opdivo combos and 18 opdivo. There were side effects starting with the rash the second week. 16 months later I still have the rash but my rash never itched or burned as so many do. I went through multiple side effects with at least 5 or 6 at the same time since the 3rd dose of yervoy. I still have multiple side effects but my body has handled them well, I still go to work everyday and still get opdivo every 2 weeks. But my 7 melanoma tumors in my lungs are gone and I am NED. If you are worried about side effects ask yourself what happens if you don't take the drug?
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- September 28, 2017 at 6:56 pm
I know, and it is a part of my thinking too, it is the 10% chance that it helps that is concerning and with Melanoma being such an invasive and highly recurring cancer, I am just trying to make sure I cover everything in my mind and heart before I make my decision. I send you my greatest well wishes and pray for a continued diagnosis for you and future outcome and am thankful for your response.
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- September 29, 2017 at 1:48 am
Hi Happygal –
I was on a trial for Ipilimumab (now Yervoy) back in 2008 – 2009. The dosage was 10MG/KG – unsure what your dosage might be. I worked full time during all of it. Had some side effects (eye issues – somewhat rare but treatable) but nothing that kept me from living life and working. Ipilimumab worked for me as I was a responder and have been NED (no evidence of disease) ever since. At Stage IV my decision to go with Ipi was simple – I wanted the chance to live so I jumped at the chance to get into the trial. It worked for me – no regrets.
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- September 29, 2017 at 10:45 am
I had 3 of the 4 treatments of Yervoy/Opdivo combo due to raised liver levels. Second Petscan has shown most of the 6 tumors you cannot see anymore! I can now buy green bananas! Bringing my ALT/AST down now with Prednisone. And now on thryroid. But "I'm Walking On Sunshine, Oh Yeah, Feelin Good!" Side effects, low thyrod, fatigue, rashes. Yes it is worth it!
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- September 29, 2017 at 10:47 am
ow did it affect my daily life? Being 70 I retired. I was part time and I still go in and work maybe 4 hours a week or evry other week as a bookkeeper at sons computer store. But don't rish your life by not doing it. Is it the combo or just Yervoy?
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- September 29, 2017 at 4:41 pm
Hello, I know everyone reacts differently to Ipi but just wanted to tell you about my husbands experience but he was Stage IV. He was on IPI/Yervoy at 10 mg/kg for the initial 4 infusions for 12 weeks and then went on maintenance doses for an infusion every 12 weeks for 2 and 1/2 years and also had GMCSF which were self injections every day for 14 days and 7 days off for the full time as the Ipi. He had fatigue and some other things but he also was going through detached retina surgeries (5 of them in one eye). If you would like to read his story it is in his profile.
He was stage IV with lesions in the liver, lungs an unresectable one at the cervical spine and 4 sub q's up at the unresectable lesion. He has been NED for over 5 years.
Judy (loving wife of Gene Stage IV and thanks to Ipi/Yervoy and GMCSF NED for over 5 years)
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- September 29, 2017 at 7:07 pm
thank you for your story. I understand everryone has a different story and all of tehm are inportant. They have all helped me to confirm what I initially felt abut then 2nd guessing can really get you.
Thank you to everyone for their input, so appreciated and healthy healing blessings to all!!!!
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- October 2, 2017 at 2:29 pm
I had Yervoy treatment at stage 4 melamoma. It worked for me, and I didn’t have side effects except rash on small area on my leg. Last infusion of Yervoy was beginning of April 2015.
Now I am on six month scan.
Go for it# -
- October 2, 2017 at 2:32 pm
I also had radiation.
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