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Update on my neoadjuvant treatment

Update on my neoadjuvant treatment

Posted By
Lucygoose
4/20/2019 8:06am
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Replies: 5

Hi! 

I’ve had 2 rounds of ipi/VX15/2503 as neoadjuvant treatment for Stage 3B, primary unknown.  My scans are May 1 and neck dissection surgery May 6.  

My side effects are rash and fatigue. Bad fatigue - I’m getting more tests for that. Rash is responding to the steroid cream. 

The great news is the big lymph node in my neck that started this journey is noticeably smaller.   I know the scans are the definitive measurement but externally it is a dramatic difference.  

It’s a clinical trial so fingers crossed this is a good sign for all of us.  

I just couldn’t wait to share.  I’ll let you know what the scans show.  

I’m feeling hopeful!

Lucy

Lucy

Hi Lucy, you have to love "Science" neo adjuvant before surgery treatment to see if a new drug works to increase T-cell getting into tumor!!! Makes a lot of sense to me, and the trial set up is pretty interesting with arms of the trial having ipi + VX15/2503(pepinemab) and another arm having nivo+ vx15/2503, and a third arm having combination of ipi+nivo vx15/2503. I am sure you have done your own reading on this topic but I thought that i might include two links for those who have not seen the study. It looks like it is only being offered at Winship Cancer Institute in Atlanta at the present time. Best Wishes!!! Ed http://www.vaccinex.com/development-programs/vx15-immuno-oncology/

There are other neoadjuvant trials with different drugs at other sites.  MD Anderson is doing NIVI plus an Anti-LAG3.  I considered this one. Hiwever, I live in Atlanta and I also just ‘clicked’ with the doctors at Emory.  Don’t get me wrong, MD Anderson docs were very nice, very excited about their study, extremely knowledgeable and are tops in the field.  I recommend them highly.  I also recommend my docs at Emory Winship highly.  

I am not familiar with other neoadjuvant studies but it’s a hot topic and I am sure the other big centers are doing them.  

Does anyone know if Sloan Kettering or other sites have neoadjuvant studies underway?

lucy

Lucy

So happy to hear that the troublemaker lymph node has shrunk in size!!!! If you can notice it externally, it sounds to me like the official internal shrinkage should also be noticeable, as well. Keeping my fingers crossed that the scans will confirm the shrinkage.

The fatigue has to stink, but that's a temporary situation. Is there anything you can to do manage the fatigue?

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

I would say your immune system is reacting. My rash appeared the second week and is still here 35 months later. The fatuige is horrible and probably my worse side effect. My last treatment was in August 2018 and the fatuige has not let up at all and has a huge effect on my life.