Hi, new to the group. NSCLC since February

[JimWyo]

Hello!  Need to interact with people who are in the same boat as I- diagnosed last February,had 37 treatments of radiation and 5 chemo.  Pet scan in July revealed nothing but scar tissue.  Pet scan in October revealed that either itdidnt go away completely or reoccurred. 

Now I am have way thru with another 16 radiation treatments, more targeted this time, and 5 more sessions of chemo - every 3 weeks, much stronger dose than last time.  

Had my first chemo last Friday.  Had the injectable on body Neulasta last Saturday.   The Neulasta has really kicked my but this week with muscle and bone pain, so bad that I asked for prescription pain pills.  Today was the first day in the last few days that my pain is around a 3.  It has been a 7 or 8 this week.  

The doctors are still talking “curative” for my cancer, so I am hopeful.  I had very little side effects with the first chemo, didn’t even lose my hair.   With this chemo, I just generally feel yucky, but so far still have my hair after a week.  I’m not too worried about losing my hair if I do however.

Thanks for listening! 

[Joy Marie]

Hello Jim.  I'm caring for my mom who just finished her 2nd of 4 infusions.  She went through 1st infusion great.  This 2nd one she started losing her hair last week and today she's almost completely bald.  After Nuelasta were you told to take a10 mg Claritin tablet with 500 mg of Tylenol once a day for 4 days?  For some reason it really helps with the bone pain.  I wish you well through your treatment!  Love that word curative.  We have heard that we well.   Wishing you the very best.     Joy

 

 

 

 

 

[JimWyo]

Hi Joy!  Yes I took the Claritin along with Aleve and it didn’t really help with the pain.  

I am expecting to lose my hair, although my mom never did lose her hair with chemo years ago.  We’ll see. 

Best of luck to you and your mom!

[Joy Marie]

Thank you so much!  

[BridgetO]

Hi Jim and welcome. Sorry to hear you're having trouble with the Neulasta. That's not uncommon, unforturnately. I had neupogen, which I gave myself as daily injections for a few daya after each infusion. I had no side effects, although some people do have pain with neupogen as well as neulasta. My chemo was for a non-lung cancer that I had prior to my lung cancer. I'm NED on both of those now, as well as on a breast cancer, so I guess this modern medicine stuff works! I thought hairlessness (and all my other interesting side effects were a small price to pay. Best of luck to you.

Bridget O

[JimWyo]

Hi Bridgett,

what does NED mean?

I forgot to mention I was on Imfinzi immunotherapy from July thru October and the darn stuff still showed up.   We are attacking it aggressively now, so I am hopeful we can still get rid of it once and for all. Take Care!  Jim

[BridgetO]

Hi Jim,

NED means No Evidence of Disease. NED is generally (or at least often) used where people used to say "in remission" or "cured", since we never actually know whether we're cured or not. So NED is what we usually aim for. You'll probably see the term NED a lot on this site! 

So you're not on Imfinzi now?  I don't know if you saw the topic durvalumab (generic name of Imfinzi)  in the Immunotherapy heading. What is your treatment now? 

Bridget

[JimWyo]

Not on the imifinI now.   I’m on stronger doses of both radiation and chemo now - two chemo drugs, ramucirumab (Cyramza) and Docetaxel (Taxotere)

congrats on the NED!  I hope that one day I will be able to use that as well!