Need advice!!!: So Ryan’s oncologist... - Melanoma Caregivers

Melanoma Caregivers

Need advice!!!

kellyOd
kellyOd

So Ryan’s oncologist just called and said that the Yervoy Keytruda combo is being switched to Yervoy Opdivo combo and I’m fuming. I’m pretty sure she said that it was changed because of an insurance issue and I need advice on what to do. Should I fight for the Yervoy keytruda combo? From what I’m reading it has had great success. She said the opdivo and keytruda are very similar. But I’ve also read keytruda is a lot better..

Any advice!? I’m so angry lol

10 Replies
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Kelly,

Mark was originally on Yervoy & Opdivo, only 2doses of Yervoy, and now is on Opdivo alone. He has done absolutely amazing on the Opdivo for 16 months. Our oncologist told us that the Keytruda & Opdivo were basically the same thing. For me, I would say take a deep breath and don’t stress. Insurance red tape can be aweful I know, but the Opdivo is a great drug.

Michele

I just want what’s best for him and if I have to kick and insurance companies ass I’ll do it 😂 I know it’s a good combo.. but she sis simply for insurance reasons it was going to be this way... he will get 4 doses of Yervoy and opdivo then stay on opdivo so long as he tolerates it well.. the switch is making me anxious as it is 😔

Kelly I totally understand the change is frightening. I am right there with you They are taking Ryan off the Taf/Mek is that right? And saving it for later use. This is the exact same thing they have done with my husband. And now he is just on the Opdivo alone, only difference, is my husband was on the Opdivo while on the Taf/Mek for 6 months (I was so afraid to stop those drugs) because his cancer was pretty much all over his body, except his brain, and he is now NED. I am still upset with the Dr for changing Mark from the 2 wk dose to the once a month dose after 16 months, he was doing ok, so why change it. When we went to the Dr yesterday they put him back on the every 2 wk dose. The Dr didn’t like the fact that he lost 12 lbs in 4 wks and has been really nauseous the whole 4 wks. I’m praying that he can get back to where he was before this change. I am praying that Ryan does well on the combo. I know they told us a lot of people can’t handle the 4 doses of Yervoy, but that if you can make it 2 that’s still great. Hang in there you are doing an awesome job taking care of Ryan and being his advocate.

Michele

That really is so nice to hear though.. seriously I needed that. Knowing that your husband has a very similar story to Ryan. The cancer was everywhere. And with the taf mek is like.. gone. I had to get that confirmed multiple times cause I couldn’t believe it. Yes so he will discontinue the taf mek unless these new drugs don’t work then he will go back on if necessary.. the change is coming very soon. Within the next two to three weeks. He is scheduled for the 4 week dose with both. I just want them all to work. So anxious is taking a toll on me. I become a monster sometimes cause I want to protect him but I don’t have a PHD so I have to trust what they say. I wonder why he lost so much weight???? I know scans are coming up for you guys. We have one tomorrow for the brain. PET is being scheduled now. Nerve racking to say the least.....

missyrand
missyrandAmbassador in reply to kellyOd

Gosh. We all need to keep breathing. It is such a challenge to try to read the literature as caregivers and be advocates without medical degrees. there is some point where we have to acknowledge that we are doing the best we can, with the knowledge we and the treatment team have at this point in time when so much is in flux.

Questions like is this life extending or palliative or compromising or is the disease taking new shape and what % liklihood of "success" (please define success....) are we talking about and at what side effect/ life effect cost.

Tricky stuff. And we all may have different values as to what is worth the cost at various points in time.

Thanks for letting me think out loud.

missy

Kelly, I totally understand it is amazing when these meds work. We were in total disbelief as well when they said Mark has NED. I will be praying all goes well with the change in medication and treatment. Not sure why Mark lost weight, but praying in 2 wks it goes back up, and he starts feeling better. Praying the brain MRI has good results for Ryan tomorrow. Yes, Mark’s scans are due in March, and the Dr said if he is doing ok when he goes back they will stay on schedule for March, if anything changes then they will do his scans sooner. It’s an emotional roller coaster for sure. EnJOY every moment.

Michele

missyrand
missyrandAmbassador

Kelly,

You already know that Keytruda and Opdivo were developed by competing companies at about the same time. And for the past several years oncologists have been telling patients they are "basically the same medication".

There is new research happening all the time, and there are now some discriminating happening between these two meds. I don't know if you can ask more questions of your doctor like:

1. Besides the insurance issue, can you tell me how the change is medication is indicated and why clinically?

2. Have you viewed the tumor genetic profiles in such a way and compared it to the current clinical literature in a way that you can feel comfortable that Optivo is equal or superior to treat Ryan at this time?

3. Under what conditions would the doctor/ prescriber advocate with you and the insurance company to continue or switch to Keytruda?

This is all I can think of this late at night....

I hear your anxiety, loud and clear.

missy

kellyOd
kellyOd in reply to missyrand

Those are awesome questions. I am definitely going to ask!! Thank you!! It’s hard when I’m upset to conform thoughts. I’ve watched quite a few videos on the combination. Today is a beautiful snow day so I have time to calmly watch and learn what I need to :)

Both drugs are generically PD-1. It’s just the brand name you are dealing with now. He’s still getting what he was originally promised. It’s $50,000 a treatment, so your insurance company probably has a deal with one of the manufacturers for a better price. Really, it like taking acetaminophen and trying to decide if you should take Bayer or a Tylenol. Opdivo and Keytruda are brand names for the same drug. Hope this helps.

kellyOd
kellyOd in reply to Crycleo

Thanks so much!!

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