Hi all!
Next weekend, Feb 9-11, Anita (Scifiknitter) and I will be attending the Lung Cancer Leadership Conference sponsored by Free to Breath in Atlanta. We’ve decided we would like to interview each other and blog about our weekend experience.
Are there questions you would like us to ask of each other? We will also be meeting with a number of experts and researchers. Do you have questions you’d like us to get answered for you?
Let us know. We promise pictures and great info.
Denzie and Anita, I will be at the conference as well! I’m looking forward to the wealth of information being presented as well as meeting with fellow survivors. I’ll volunteer to hold the camera for you during your interviews 😉
Side note: PET/CT scan today continues to show no metabolic activity or metastasis. Doing the happy dance in Denver💃🏻
Peg- this one’s for you. Let’s dance! m.youtube.com/watch?v=9G4jn...
Peg, that is super duper news! I look forward to meeting you soon.
Anita
Oh My GOSH!!! hahahahahahaha....wow.
Very well presented.is there any one please advise if you have been diagnosed with false positive or negative results in PET-ct Scan images,giving misguided treatment options in the past?
Anything is possible but I don’t think that has happened in my case. We also follow tumor markers to give a heads up to progression, even though I am not taking a TKI. Tumor markers in conjunction with PET/CT gives the clearest diagnostic and treatment response picture that I am aware of. Here is an article that came out late last year. You can also find same reference in Science Daily, dated Sept 6, 2017. I would be interested in anyone else’s experience.
coloradocancerblogs.org/blo...
Hey Peg, I thoroughly enjoyed visiting with you in Atlanta! This is an interesting article and it backs up others that I’ve read. I wish we’d had more time to talk with the doctors and ask questions. This article reminds me of another question. Does a clear liquid biopsy mean that the targeted med is no longer working, or, that it’s mutated to something other than T790? It’s a question I’m saving for the next educational seminar.
Liquid biopsy seems giving false negative results more easily.For my actual case,I got negative t790m in the 1st blood serum test,but positive in the 2nd test .So my oncologist prescribed me OSIMERTINIB 80mg tablets.But my CEA jumps up 40% from 109.Maybe the the research paper is right.Some 69% would have CEA shooting up in the first four weeks with new TKI.Appreciate if any warriors here can share their valuable advices.
Looking forward to hearing all about it.
Hey friends - we are hoping we can take your questions with us. Ask away - we will be on the hunt to get answers for you and bring back as much info as possible. Put us to work!
For experts:
Why does it appear that after you've received radiation, chemo and surgery, that follow up CT scans are only done of the chest area when so many times the cancer metastises to other areas of the body?
Thanks and hope you all have a wonderful trip to Atlanta (I just moved from Atlanta this past weekend.)
Hi Denzie,
Glad to see you still helping others, you are a star. Some time ago you did ask a question for me, and I wondered if you could maybe ask it again if you get the opportunity. It might just recall something in a different audience. My question is,
There seems to be a number of folk where they had symptoms going on for 2 or more years and eventually diagnosed with small cell lung cancer. What is the chances of the symptoms of small cell lung cancer going on for this time without detection if CT scans were done over this period? Most information I look at talks about sclc symptoms going on for only a few weeks before diagnosis due to how quickly it grows. Does it start of slow growing and then take off quickly?
I don't get on the internet much these days, so I was surprised to see this opportunity, it must have been fate.
I hope you find the weekend rewarding and thank you for sharing.
Ed
I do remember asking this one. It will definitely be a different set of doctors so we’ll get more viewpoints. Can you remind me what some of those symptoms were?
Hi Denzie, it was mainly fatigue with some gastro symptoms including bloating, sweating and mild headaches. There was also some mild muscle loss.
When I spoke to our friend RW, he seemed to have had investigations going on for a couple of years before his diagnosis and there seems to have been a few others too. Very strange and not really what we would expect with SCLC and I think your last response confirmed this. Maybe other stuff is going on too, who knows. Praise to you for helping like this, I am sure others will find it useful too.
Ed
I responded to the word u said endro it’s in my report before clear cell why is that worse?
That something only a doctor can answer. My guess is that clear cell lung primary is different somehow than clear cell of endometrial origin.
Remember, I’m not a doctor, I may be well informed for a cancer patient but I had never heard of this until you wrote about it. Everything I know about clear cell lung primary is contained in the links I sent you. Not all endometrial clear cell cancers are aggressive either, that I learned reading about the endometrial looking for clues to help the search.
If this were my body and my surgeon told me that mine was a non aggressive cancer I would keep up my regular screening tests and try to focus on things I can control.
Thanks my oncologist nurse said I only have clear cell features and not endometrial so the nurse said it’s a good thing, harder to treat but low reoccurrence so I’ll just keep up with my treatments and let you know when I do radiation and I only have one more round left feb 27 and then I’m done then radiation thanks for helping me
Lovey! Thank you for introducing me to this topic. I love learning about new thing and being able to help others gives special meaning to my life. Im
All I know is the surgeons nurse said I have carcinoma with clear cell features period.... what that means I have no clue,.,, one more round on the 27th feb then radiation I hope I live and I’m scared
Looking for strength and advice
What are your favorite Lung Cancer related charities to donate to?
