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Roz

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  1. Thanks
    Roz got a reaction from Rower Michelle in The Scan Results- good news   
    Hooray Michelle!
    I'm so happy that you got such great news. NED is the best!!! 
    Best,
    Ro
  2. Like
    Roz got a reaction from Deb W in Not great news on PET CT   
    Hi Teri,
    If there's one thing to be sure of, there is nothing about lung cancer to be sure of. It seems like there are so many exceptions to what typically happens.
    Sounds like you have a great oncologist given the approval of your surgeon! As the options for treatment are presented, I know you will make the best decision for you and your particular cancer. It's so scary and the fact that 6 months ago everything looked okay is even more frightening. 
    I'm thinking of you and hoping there's a treatment plan put together soon!
     
    Best,
    Ro
  3. Like
    Roz got a reaction from jack14 in CT scan results   
    Great news Jack!!
     
    Best,
    Ro
  4. Like
    Roz got a reaction from LexieCat in Not great news on PET CT   
    Hi Teri,
    If there's one thing to be sure of, there is nothing about lung cancer to be sure of. It seems like there are so many exceptions to what typically happens.
    Sounds like you have a great oncologist given the approval of your surgeon! As the options for treatment are presented, I know you will make the best decision for you and your particular cancer. It's so scary and the fact that 6 months ago everything looked okay is even more frightening. 
    I'm thinking of you and hoping there's a treatment plan put together soon!
     
    Best,
    Ro
  5. Like
    Roz got a reaction from Tom Galli in CT scan results   
    Great news Jack!!
     
    Best,
    Ro
  6. Like
    Roz got a reaction from Tom Galli in Not great news on PET CT   
    Hi Teri,
    If there's one thing to be sure of, there is nothing about lung cancer to be sure of. It seems like there are so many exceptions to what typically happens.
    Sounds like you have a great oncologist given the approval of your surgeon! As the options for treatment are presented, I know you will make the best decision for you and your particular cancer. It's so scary and the fact that 6 months ago everything looked okay is even more frightening. 
    I'm thinking of you and hoping there's a treatment plan put together soon!
     
    Best,
    Ro
  7. Like
    Roz reacted to LexieCat in CT scan results   
    FANTASTIC!! So happy for you. Keep it goin'!!
  8. Like
    Roz reacted to jack14 in CT scan results   
    Well, I saw my Onc today and got the results of yesterdays CT scan. She had told me last week that she was not very optimistic that the Keytruda was working for me. She based that on the one lymph node that she can palpate which didn't feel as though it had shrank any, but had maybe even grown some.
    She added that we would probably be switching to chemo therapy a day or so after the scan.
    I had my first taste of "scanziety" and I sure didn't like it.
    So, I get my blood drawn for my tri-weekly labs and vitals taken. And she walks in the room and, we are both wearing masks so I can't see her expression. Her eyes seemed to shine though and I was hopeful.
    She sits down in front of me and says, "I have some good news", and tells me that the scan showed moderate but definite tumor regression in the primary lung nodule and in the two lymph nodes. So, we will continue with the Keytruda regimen.
    whew.....thank you God. Please project this blesswing to my cancer brothers and sisters as well.
    amen
  9. Like
    Roz reacted to Jennedy in Starting treatment   
    @CLM I am officially one week in. I started with dull headaches over the weekend. I wonder what the new one will be later this week.....
    But my cough is almost gone!
    Jenny
  10. Like
    Roz reacted to LouT in Not great news on PET CT   
    Lexie,
    So sorry to read about your results, but you are doing all the right things and anything your surgeon can do to help expedite the process is a good thing.  It's also good news that he expressed faith in your new oncologist.  I'll be watching your updates and prayers are always going up.
    Lou
  11. Like
    Roz reacted to Moonbeam in Not great news on PET CT   
    Lexie - I am so sorry to see this...so glad you reached out to your surgeon and someone you trust so much. I hate this disease. Please keep us posted and sending prayers your way. XX
  12. Like
    Roz reacted to ColleenRae in Not great news on PET CT   
    Terri... Just read this. I am heartbroken for you but in awe of you at the same time. Look at you go! You are incredibly pro-active, intelligent and a fighter. That is apparent.  You are getting some amazing information and advice here. What a blessing the people here are.  I realize this happened earlier in the week, so I need to catch up here.  Thinking of you and wanting the best for you.
  13. Like
    Roz reacted to Deb W in Not great news on PET CT   
    Hi Lexi,
    I just ready your post.  I totally understand the anxiety.  Hang in there.  So glad that you've found someone in the medical community that is such a good advocate.  Wishing you all the best and sending positive vibes.
    Deb
  14. Like
    Roz reacted to LexieCat in Not great news on PET CT   
    Thanks, Michelle,
    At Tom's suggestion, I called my surgeon who did my lobectomy three years ago. I haven't seen him in over two years, but he'd given me his personal cell phone and told me to call him any time. He answered immediately, remembered who I was, and pulled up my records to look at while we talked. He agreed that it looks pretty serious and said he was going to make some phone calls to see what could be done about expediting the biopsy. (Thank you, Tom, for the suggestion!!) He thanked me for trusting him enough to call him. I wish he could still be in charge of my treatment--the BEST doctor I've ever run across in terms of the way he talks to me. But he tells me that my new oncologist is super smart on the targeted therapy stuff. I told him I was also interested in radiation, if that's an option--whatever will knock these things out. He noted that he also wants to be sure we're not looking at SCLC this time, given the high SUV levels and kinda going from zero to 100 mph. 
    Honestly, I'm SO glad I called him. He told me he'd be advocating for me at the tumor board.
  15. Like
    Roz reacted to Rower Michelle in Not great news on PET CT   
    Gosh Teri,  I’m really sorry you had to wait the whole weekend and be hit with this first thing today.  
    The treatment plan will really hinge on the status of the biomarker study.  Given the previous clean scans followed by the PET results it would suggest there is a targetable therapy available.  I had multiple scattered spinal Mets (to everyone’s surprise) with much lower SUV values that yours.  I was too naive to understand what it meant at the time.  Within four months the targeted therapy knocked out the cancer and now I’m left with calcification.  
     
    When there is a mutation the oncologist will use the most effective treatment first, radiation is often held for down the road.  
     
    Good news today the biomarker results come back much faster than when I had mine two years ago.  You should have some answers “quickly” in the next 7-10 days.   
  16. Like
    Roz reacted to catlady91 in Not great news on PET CT   
    I can't stand all of these reports; I wish that they were written in a way that was more understandable and digestible for patient. It's the same with my mum's reports; there's so much medical jargon that it's hard to understand everything. I try not to read too much into these reports and focus on what the doctors say. 
    Gosh this sounds so stressful and horrible. I hope that everything will be ok. When was your last scan before this one?
  17. Like
    Roz reacted to DebM in CT Scan Results   
    Thank so much for the quick responses ladies.  I am usually pretty calm and don't typically panic until I have all of the info.  This has just absolutely blindsided me.  My family was celebrating my last treatment 6 days ago.  I can't imagine telling them this news.
    I'm not sure how to reply to you individually...
    Thank you for the info Roz!  I do not think that I had biomarker testing done.  It doesn't seem to be included in my test results and I never received any information about it.  I will talk to the surgeon about it when I hear from him.  I have read many of your posts and am inspired by your story.
    I'm so sorry to read about your recurrence LexieCat.   I have read your posts since my diagnosis.  I appreciate all of the info that you have shared.  Clearly the chemo doesn't guarantee anything...I literally just finished it.  
    I am hoping for the best for both of you!  
  18. Like
    Roz reacted to Tom Galli in CT Scan Results   
    Deb,
    I'd freak out also. Most perplexing are the words: "indeterminate and possibility of metastases!"
    I have "phantom nodules" that appear one scan and are gone the next. I've been dealing with these for years and in fact even record them by scan date and location on a spreadsheet. That helps reduce my post scan freak show. But I still suffer scanziety. I've not found a solution for reducing the pre-scan scanziety or the post scan freak "phantom nodule" show. It just seems to be part of the disease.
    Likely you'll have a consultation with a medical oncologist or pulmonologist to discuss the results and path forward. I'd suggest asking your ordering physician to have the scan reinterpreted by another radiologist. Perhaps that might resolve the ambiguity.
    Welcome back by the way. 
    Stay the course.
    Tom
  19. Like
    Roz reacted to LexieCat in CT Scan Results   
    I'm with you on freaking out a bit. I'm three years out of my lobectomy (Stage Ib at the time), have been scanned every six months and all of a sudden I'm looking at some pretty scary PET-CT results. I go for biopsy in a little over a week.
    This cancer stuff seems utterly random--nobody was predicting I'd have a recurrence--not this far away from my initial surgery. But we gotta deal with what's in front of us. I didn't have chemo after my surgery (though it was offered--but not strongly recommended) and, of course, now I wish I had. Yet your experience shows that even the chemo can't guarantee no recurrence. For a lot of people, recurrence never happens. 🤷‍♀️
    There are more tools in the toolbox. Keep the faith--that's what I'm telling myself.
  20. Like
    Roz reacted to LexieCat in 2nd time through   
    Welcome! I'm dealing with a post-lobectomy recurrence, too, though mine looks to be more extensive (biopsy in a week, then we'll know more).
    This is a great group--I've been around since my first diagnosis/surgery in 2017. There is a TON of collective experience here, as well as a lot of encouragement and support. 
    Very sorry about your situation--it really sucks when things have been going well, to get this kind of news. But you're in the right place--glad you're here.
  21. Like
    Roz got a reaction from DebM in CT Scan Results   
    DebM,
    Did you have biomarker testing done after the surgery?
    I had the same chemo regimen as you and my cancer recurred. Initially, they said it was "spots" and they weren't sure. But after about 8 months they said it was recurrence on both sides.
    Once you know the results of the biomarker testing, you will know what options you have for treatment. Hang it there!!
    Thinking of you!
     
    Ro
  22. Like
    Roz got a reaction from Rower Michelle in CT Scan Results   
    DebM,
    Did you have biomarker testing done after the surgery?
    I had the same chemo regimen as you and my cancer recurred. Initially, they said it was "spots" and they weren't sure. But after about 8 months they said it was recurrence on both sides.
    Once you know the results of the biomarker testing, you will know what options you have for treatment. Hang it there!!
    Thinking of you!
     
    Ro
  23. Like
    Roz got a reaction from purplegolfchic in VATS or Thoracotomy for 2 lobes at same time   
    Hi Martha,
    I had my lower left lobe removed with VATS surgery in Sept 2017 and my upper right lobe was removed October 2017 by Thoracotomy because the mass was 9.7cm big and the surgeon couldn't do it with VATS. Sometimes when they get in there, they have to be ready to switch from VATS to thoracotomy. So, I have 3 lobes now. Recovery was definitely harder with the thoracotomy but there really wasn't a choice as it was decided during the surgery. I did fly the end of Dec. 2017 to the Bahamas prior to beginning chemo. I don't remember there being an issue with flying!

    Best of luck,
     
    Ro
  24. Like
    Roz got a reaction from Tom Galli in I’m new here-NSCLC   
    No problem!! Thanks for explaining it LexieCat!
     
    Ro
  25. Like
    Roz reacted to Lin wilki in Tumor board   
    Sounds like you have a pretty good grasp of your possibilities.  You can certainly wait until you know fully what you’re dealing with
    We are all pulling for you
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