New member: cdbar

[Cdbar]

Hi, everyone,  I was diagnosed with Stage 4 NSCL cancer in Nov, 2020, with Mets to brain and spine.  (I’m 75 and pretty healthy). My first treatment in late December was Gamma Knife Surgery to slow the small tumors in my brain.  Then, while waiting on results of blood biopsy for genetics, I was given 10 days radiation to my lower spine to stop the pain there.  It worked well. After that it was found that I qualified for targeted chemo, and am now taking Tagrisso.  Just a little nausea and diarrhea.  Have a great oncologist, who tells me only info that I need and refuses to speculate.  That’s important for me, though at first I was frustrated. I am tired a lot, and don’t know whether to expect that to wear off or remain.  I’m retired, so it’s not like I have to get up and go to work.  

Very glad to find you all!  

[LexieCat]

Hi there, and welcome.

I'm also Stage IV, but no actionable mutations, so I've been on chemo and immunotherapy for the past few months and so far, so good. 

I LOVE NM and ABQ--before all this COVID & cancer stuff, I had plans to move there (most of my family are in Colorado), but looks like I'll be here on the East Coast for a while longer. It DID look to me like you had a pretty good cancer center there--is that where you're being treated?

[Cdbar]

NM has a few good cancer centers, but the one I use is NM Cancer Center, whose team approach has been the model for centers all over the US. I’m from the East coast (DC area), but I wouldn’t live anywhere except NM, given the choice. 28 years and counting. I sure understand your wanting to move here!  
how long have you had cancer? I keep reading that stage 4 NSCLCancer is easy with targeted chemo. Could that be true??

thanks for the welcome, LexiecCat

[LexieCat]

I don't think Stage IV lung cancer is "easy" for anyone--and there are always a few people who are unable to tolerate even the targeted therapies (like Tagrisso). But for many people the targeted therapies have fewer side effects (and taking pills is definitely easier than going for infusions), and it sounds like you are doing OK with it so far--hopefully it's very effective for you. 

I was diagnosed with Stage Ib lung cancer in 2017, for which I underwent an upper left lobectomy. I opted to pass on adjuvant chemo, since the research showed it was a coin toss whether it would do any good. I continued to have scans every six months, and then last summer, three years exactly from my initial diagnosis, the scan showed cancer in the right lung, as well as a very small bone met on my sacrum. Because of the bone met I was Stage IV, and since I had no mutations, started with chemo and immunotherapy. I haven't had too rough a time with it--quite a bit of fatigue from time to time (not constant) and "brain fog," which is pretty common. I'm not working now--out on disability and thinking I probably won't go back to my job (lawyer at a nonprofit). It's just too tough to focus. 

BTW, a few months after my lobectomy I went to the Balloon Fiesta and had my first balloon ride. It was a nice way to celebrate my recovery!

[BridgetO]

'Hi Cdbar and welcome from me too.  i don't have any info on Tagrisso. My lung cancer was 1a and I'm still NED (no evidence of disease) since my lobectomy 4 years ago. I  just want to say hi and welcome.  This site is a good place to get information and support. Let us know what questions you have and somebody here  will probably have answers. 

BTW, I also love Albuquerque. I had a trip there planned that was cancelled due to COVID. 

[Cdbar]

Thanks BridgetO for the welcome. How wonderful you are NED!  Congrats. Is that the sAme as being in remission or does it indicate a cure?  This terminology is still new to me. 

to you both and anyone who loves NM, the Balloon Fiesta is one of my joys. Can’t wait until we can have it again!  

[Judy M2]

Hi Cdbar, I am Stage 3b and had chemo and radiation and have been on Tagrisso for 11 months. The side effects you describe are common. I think your fatigue may have come from radiation and should improve over time. 

There is a closed Facebook page Tagrisso (osimertinib) Patients and Caregivers Group, where there are many valuable discussions about the wonder drug. Some people have more side effects than others (I'm lucky I have none). Some people are on Tag for years with no progression. 

My oncologist doesn't use the term NED (No Evidence of Disease). He uses the term "stable" and that's OK with me. Hope you get there too. 

BTW, in 1971 I went to UNM for a semester. It was a blast, Albuquerque was a great town. 

[BridgetO]

Hi again Cdbar,

Most oncologists don't use the terms "cure" , seems like especially for lung cancer. They sometimes say treatment is "wirh curative intent", which mine was. It's hard to say whether/when/if lung cancer is cured, because it does have a tendency to recur. So generally NED is what we aim for.  "Stable" is a good aim, too, but I think it's a little different, in that there may be some evidence of remaining cancer, but it's not going anywhere. (That's my interpretation of the terms anyway).

I hope I can get to the Balloon Fiesta sometime. 

Bridget O

[Cdbar]

Thanks, BrigetO.  It’s helpful to have any info on this process.