Jump to content
Barb1260

Frustrated-Is this standard protocol? Opinions please

Recommended Posts

Tomorrow is week 4 of this 6 week radiation/chemo journey.  The chemo started as Carbo/Taxol, had anaphylaxis from the Taxol so was changed to Taxotere which I also had a reaction to.  Now waiting for approval for Abraxane (Paclitaxel) as the 2nd chemo with the Carbo.  Research is showing me that this is from the same Yew tree which is probably what I am allergic to (I'm allergic to most trees, grass, weeds).  When I called the onc's office, I was told that it is protein bound and should not have a problem.  I am now 1/2 way through this with only one chemo and am frustrated and a nervous wreck wondering if I'm not getting the full treatment if its even working to keep it from spreading.  I've asked about the 1/2 treatment and it seems they aren't concerned as I am getting the Carbo.   I understand there is step therapy the insurance company makes you go through in order to get something approved but is this standard protocol?  Are there certain chemo's that need to be tried first as first line treatment?   I'm ready to fire my entire team and start over but afraid if I stop now to get a 2nd opinion and start over I will make matters worse.    The radiologist has shown me that the tumor is shrinking so that is a good thing at this point.  

Share this post


Link to post
Share on other sites

Barb I think you are asking some great questions.  I’m not sure how to answer but trust your instincts.  Maybe it’s time for a second opinion.  Doesn’t mean you’re starting over or firing your team- just looking for confirmation or out of the box thinking  

You might want to contact the Bonnie J Addario Foundation- they have resources to facilitate second opinions.  

Try not to worry too much- Carbo is a mega bomb.  Did your biomarkers ever come back?  

Share this post


Link to post
Share on other sites

Hi Michelle-insurance won’t cover bio until stage 4.  How did insurance companies get so much authority on someone’s medical treatment?  

Share this post


Link to post
Share on other sites

The insurance medical necessity criteria is not in line with the standard of care.  It’s outrageous.  Our policy included bio marker testing for Stage 3 & above.  That didn’t stop our insurance company from denying the Foundation One test three times.  I’ve made good friends with the benefits team to manage the denials.  

We were prepared to pay the $5800 out of pocket as Foundation One has a pretty generous financial assistance program.  Regardless of how the final appeal turns out- Foundation One has provided me 100% financial aide.  

I do plan on visiting with our legislators to advocate for a new patient bill of rights.  Insurance companies have far too much input into our care plans. We’re in an era of cutting edge treatment & in my opinion the doctor’s recommendation should not be challenged by bureaucrats.  

Share this post


Link to post
Share on other sites

That's wonderful news, Barb! We're very glad to hear you're back on track!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

Share this post


Link to post
Share on other sites

×