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Got my 2nd opinion today


Jennedy

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On 5/7 I found out I had progression on the triplet. I set up a 2nd opinion appt at The James Cancer Institute at Ohio State for today. We had set up chemo (Taxotere & Cyzrma (sp) for 5/20. Last week current oncologist indicated he wanted to do liquid biopsy when I go in on Thursday. This will be my third line. There was one scan when I had pneumonitis, the showed things were working, but the next 2 both showed progression.

The OSU doc agrees with starting with the chemo and liquid biopsy. He said, if nothing conclusive is there, we need a tissue biopsy. He had some interesting options. Rechallenging Tagrisso (it didn't work for me. Toxicity). Using one of the older EGFR TKIs with or without chemo. He also had a few trials he knew of that might be a fit, at OSU and Cleveland Clinic.

I'm not looking forward to the Taxotere and its many side effects, but, if it works, I'm for it.

One thing OSU doc mentioned in passing was that the cancer was aggressive and wanted to make sure it hadn't transformed into SCLC.

Now, I need to have a heart to heart with my youngest about moving up her wedding from September to June. She offered. I said no, husband said maybe.

Jenny

 

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Jenny,

Oh my! I thought you were in the NED zone. I think ( I hope a whole bunch) there is no need for a wedding day move. There are mucho good docs at The James and Lungevity has connections. Let us know how things go.

Stay the course.

Tom

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Jenny, you probably know that some people on the older EGFR TKIs have gotten years out of those drugs. I hope they find the right treatment plan for you moving forward. 

There are new 3rd generation TKIs for EGFR in the pipeline:

https://www.jto.org/article/S1556-0864(20)31105-9/fulltext?dgcid=raven_jbs_etoc_email

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Hopefully there isn’t a SCLC transformation! I have heard of other survivors who have had both a trial on one of the older TKIs & a rechallenge following toxicity which were successful.  The TKIs work so quickly a three week scan would be able to detect clinical changes.  That’s the value of having an expert opinion, the team knows how to configure these TKIs through clinical instinct rather than waiting on the literature.  

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When I first had my recurrence last year, my then-oncologist had commented he hoped we weren't now dealing with small cell. THAT worried me more than anything else and I was incredibly relieved to find out we were still dealing with adenocarcinoma. I'm not sure why docs have to make remarks about what bad stuff MIGHT be there--especially if it's not necessary to an explanation of why they need to do something. I think it just adds unnecessary stress, unless the patient specifically asks about it (in which case they should be honest).

Sounds like you've got some good options there. 

And you know, September is closer than you think. It's only four months away. There's stress involved in moving it up, too. I think if it were me (YMMMV) I'd enjoy the wedding more if everyone weren't looking at me as the reason everything had to be changed. But whatever is most comfortable for you and your daughter (and the rest of the family). 

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Thanks all! I keep saying I can do September. I'm probably not going to be like I was at her sister's weddings, but I wouldn't be if it was tomorrow. So, go as planned. 

I do feel more hopeful after this appt. My Cincinnati oncologist said basically, taxotere or no treatment. Which was like, we can try this, but if it doesn't work, you're done. Not ready for that.

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Well, they moved the wedding to July 3rd. They claim that as they dug into moving it, and realized the venue, caterer and photographer were all available, they want to do it. So. Here we go.

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I'm on Taxotere and Cyramza right now and it does suck.  Not on the full dose of taxotere (I don't know how much) but the side effects (especially the mouth issues and leg/muscle weakness) are just plain horrid.  Other side effects which I won't go into here.  HOWEVER, I've heard a lot of good things about this duo so I'm feeling a bit optimistic.  I've had 2 treatments so far and have my third on Friday.  I think my doc is going to lower my dose to lesson the side effects so I have at least some semblance of a life.  I'm all for it!  The treatments themselves will go on longer but it sounds like he is totally good with me getting a smaller dose but over more time.  I'm all for that, too.  But do know that you can ask about a dose reduction if the side effects are just too brutal.  Don't let yourself be miserable.  You'll still be eating the whole bag of cookies - it'll just take a little longer!  ;)  Hang in there and if you have any questions about side effects, etc. I'm just a post away!  

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18 hours ago, LexieCat said:

Sorry it's so rough on you, Sandy. Hope reducing the dose makes it more bearable.

Thanks, LexieCat!  Yah, it bites but it could be worse, I suppose.  I've been a pretty good sport so far but this time around I'm going to let it all hang out when I talk to my onc tomorrow.    

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