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Good news from Dr Google


TJM

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For some reason I decided to do some more research on Large cell NET tumors today.  This time I searched for 2nd line treatment. Didnt find much solid information on that but did fund a very current write up on a site (Think it was called CancerNet.org. I can confirm if someone wants the site).  I do all my posts via phone and dont see away to attach a link via phone.

Anyway, the first nugget I found was a much higher 5 year survival rate. Especially if the tumor is surgically removed.  Very up to date info (updates dated 2020).  The number was in the high 80% range, even with reaccurance. Good news. 👍

The second nugget was a great write up of late onset side effects from both Chemo and radiation.  I have been annoyed that I don't feel better than I do.  Based on the write up I think most of my irritating issues (shortness of breath, bowel issues, headaches and occasional nausea) are related to the radiation. It said side effects can show up 6 months or longer after treatment.

You would think my Onc would have explained this to me eh?

Anyway....both are good things in my mind. Dont get me wrong. I'm not having any serious issues. Just annoying.  I now again have hope I will eventually feel normal.

I will post the site later in case anyone wants to investigate. I know someone else has Large Cell, but I cant remember who.

Peace

Tom

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That's great news. I follow lungcancer.net and G02 Foundation besides this one. Both of those are good sites. 

I have occasional unexplained fatigue that can last a day or two. Tom, you make me wonder if that is still a side effect of radiation treatments that ended in January. If so, I can deal with it. Luckily the nausea went away a few months ago. Hopefully with time your annoying symptoms will fade too. But bowel issues can be life-threatening, so if you have severe abdominal pain at any time, don't waste any time in getting to the ER (speaking from experience). I think that mine were caused by chemo or dexamethasone or both. In any event, I now avoid steroids, even when I had shingles in June (that was fun too). 

 

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Speakng of shingles, if you're 50 or over, I suggest you talk to your doctor about getting Shingrix, the newer shngles vaccne, even if you'v had the older vaccine, Zostavax. Shingrix is 90% effective, much more than Zostavax, which is only around 50 or 60 percent, if I recal correctly.

I didn't really understand how serious shngles can be until a close friend of mine got it. She developed post-herpetic neuralgia, a persistent nerve pain, which she's had for about 5 years now. It's really impairing her quality of life.

If you get the vaccine, be aware that it has some flu-like side effects that can last a day or so. Unpleasant, but way better than shngles.

Bridget O

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Tom,

Interesting information and surprisingly up to date; not what most articles show.  I hope your side effects go away sooner than six months.  But it's always good to know that there can be hope at the end of some suffering.  

Lou

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