catlady91

Had scans on Friday afternoon. The results showed up in my chart a couple of hours later: No nodules, no lymph node issues, stable post treatment scarring in treated area of lung, no recurrence. 
What a relief. This scan was higher on the anxiety scale for me, for whatever reason.
After I read the report, I realized I can be more intentional in how I choose to spend my days. It's so easy to take living for granted....
Oncologist tomorrow, then a respite. 
Karen

I'm really sorry to hear this Justin. Doctors are sometimes quick to give up. I read from your earlier posts that you have a KRAS mutation. I looked up more about it and there's this drug available for it. I'm not sure if it's available on the NHS but it's worth looking into.
https://www.onclive.com/view/adagrasib-provides-new-option-for-patients-with-kras-g12c-mutant-nsclc

Good news! My mum's oncologist rang today as she's extremely busy tomorrow and everything is fine. No changes and next scan in 6 months. I'm so relieved. I can also start my new job tomorrow with a peace of mind. 

Hi June,
Your experience is exactly why people say if there's a recurrence we must retest for new mutations. Stupid lung cancer is so sneaky. So glad you're seeing options!
Karen

I have had an amazing turn of events these last few days! My oncologist had ordered more genetic testing a few weeks ago, just to make sure nothing had changed before we started the new chemo. The testing company had delays for some reason. But both my oncologist and my Emory doc agreed we should delay the chemo until results came back.
So last week’s treatment was delayed while we waited. The delay was stressful in itself as the cancer appears to be growing fast now. Then lo and behold, doc called Wednesday evening saying the results were back, and this time it shows I have the ROS-1 mutation! And there is a targeted drug I can take! I almost couldn’t believe my ears. I still can hardly believe it. This mutation is rare – only about 1% of lung cancers are ROS-1. I will be starting Entrectinib next week – my insurance approved it today. It is not a cure, as everyone eventually develops resistance. But there are already 3 other drugs in trials for use after resistance.  
Not everyone responds to Entrectinib, but the response rate is pretty good – something like 70%. Seems it can keep things in check for anywhere from 6 months to 4 years. I can’t tell you how wonderful it is to have my small window of hope opening up a little bit bigger!
This mutation is so rare my oncologist has never had a ROS-1 patient before. So we will stay in close contact with the Emory Winship doc. Whenever this drug fails, she can help get me on clinical trials for one of the newer ones.
Entrectinib does have some bad side effects. I’ve already been poring over the ROS-1 forum. Most say the side effects are worse the first couple of months and then your body starts adjusting to it. Surely it can’t be as bad as chemo, so I say bring it on!
I am puzzled why this wasn’t detected last year with the initial testing. What’s really weird is the KRAS that was detected last year did not show up at all this time. I remember we had problems with failed biopsies and then a sample being rejected for some reason. I believe the KRAS was detected from my blood biopsy. I guess it doesn’t matter now, but wondering if maybe they weren’t thorough enough in the beginning.
Thank you all for your concern and for letting me vent my worries as things have played out. It will be interesting to start this new journey. Does anyone know if there are any other ROS-1 people here on Lungevity?
Best to all,
June

Awesome news! Now enjoy that new job!

That's great news happy for you .Congrats on the new job

🎉🥳🎈🎊🍾 What wonderful news, time for a little mom and daughter party! Congrats!

Good news! My mum's oncologist rang today as she's extremely busy tomorrow and everything is fine. No changes and next scan in 6 months. I'm so relieved. I can also start my new job tomorrow with a peace of mind. 

I’m so glad for you and your mom. Now, go knock your first days at that new job out of the park! 

Wonderful news!  You brought a smile to my face.  I pray for many more such scans..
Lou

Good news! My mum's oncologist rang today as she's extremely busy tomorrow and everything is fine. No changes and next scan in 6 months. I'm so relieved. I can also start my new job tomorrow with a peace of mind. 

Fingers crossed for good news.
Lou

A week is usual in the UK. Like Rikke says there aren't enough radiologists. They've always been quick with my mum luckily and fortunately she's never had treatment or scans delayed. I'm also extremely lucky she's under one of the best if not the best hospitals specializing in cancer in the country.

A week is usual in the UK. Like Rikke says there aren't enough radiologists. They've always been quick with my mum luckily and fortunately she's never had treatment or scans delayed. I'm also extremely lucky she's under one of the best if not the best hospitals specializing in cancer in the country.

Fingers crossed, keep us posted @catlady91. Positive vibes! 

Catlady,
Your mum is in my prayers for good scans...
Lou

Fingers crossed for your mum - and your new job! But the fact that she is feeling good should give you cause for optimism!
Karen - one week is very, very quick over here. We normally wait up to a month, mainly due to a severe shortage of radiologists in the NHS.

Hoping the scan results are good news. It is stressful to being starting a new job the same day. I second Karen’s advice…slow deep breaths.

A call one week after a scan is just awful, IMO. The stress of a new job on top of that is hard. The only coping strategies I can offer are some deep slow breaths and the evidence of her health and energy. 
Hang in,
Karen

My mum is having her check-up scan tomorrow. Her last one was six months ago when her oncologist said that because she's been NED for almost three years, that the scan frequency could be decreased. I hope that all will be ok. Mum seems well and happy and full of energy. The oncologist calls my mum a week after the scan so I'll have to wait till the 26th when mum has her phone appointment. I start my new job on the 26th so will be a bit jittery and distracted. Not great for my first day. 

I cannot believe your doctor is giving a "do nothing" as an option for a first recurrence of a stage 3, not to mention those life "expectancy" numbers! I am not sure if the Dr has more critical info we don't have (scale of recurrence? type of tumour? your general health?) but the option of just let cancer spread they offered to you sound strange, to put it kindly.
We have stage 4 patients living long term and thriving, let alone stage 3. As an oncologist, they should have recommended best treatment unless your health is so poor in other ways or recurrence is very horrific
(even  then they should offer second line and third line treatments etc and clinical trials).
I would certainly go ahead with treatment but feels like you should seek another opinion ASAP, from a  specialist in lung cancer at a reputable cancer centre. You got this!

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you.  
People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! 
What kind of biomarker data is your doctor working with? 
And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. 
If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel.

Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. 
Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. 
 
Karen

 

Lonnie
I was diagnosed stage 4 about 20 months ago, was devastated. First thing on my mind when I wake up every morning was I have cancer. I needed support so I joined this group it really helped me.
Lonnie when you get a treatment plan you will feel better. My treatment is targeted therapy I take 8 pills per day .After 5 1/2 months taking this drug I'm NED (no evidence of disease) .Cancer treatment these days are much better. Try posting on introduce yourself forum you'll get more responces from other people.
Hang in there and keep us posted
Chuck

"1. Stable posttreatment changes in right lower lung.
2. No adenopathy or recurrent disease.
"
I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? 
Brain check-up next month. 
Hope you're all having some nice moments in your days. 
Karen