Roz
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Posts posted by Roz
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Michelle,
This is crazy! So smart of you to take charge and go after your former employer!
There's no reason you should be put through this and I'm so sorry you have to deal with it on top of everything else.
Hope it's all resolved soon!
Best,
Ro
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Tom,
I also did an NED dance for you!
I wanted you to know that I took your advice and will see a radiation oncologist on Thursday on zoom for a consult.
I'll let you know if there's anything he suggests!!
I most likely won't be on the Friday night zoom this week because my son is coming in for the weekend. But I'll fill everyone in at the one after that.
Best,
Ro
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Michelle,
Phew that it worked out. Sorry you had to spend so much time to fix it!
Horrible system!!
Best,
Ro
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That would be Taxane..not Texane.
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For chemo drugs she mentioned trying the Texane and Ramucirab.
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Thanks everyone for your helpful responses and support.
I'll keep you posted on what happens next. For now, I wait until the
end of September.
Take care,
Ro
- SamGirl50, Tom Galli, Rower Michelle and 1 other
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I met with my oncologist (virtually) and the scans show that the cancer has continued to grow in both lungs.
It's also becoming more solid and the size of the multiple nodules is of concern.
We are waiting until the end of September to see if I get a slot in the just activated clinical trial that I have been waiting for.
However, she told me that she has no way of knowing who would get the slots. Apparently only 3 slots will open? She also thinks a Clinical trial is risky, without data on humans, and thinks I should consider different chemo drugs than I had in 2018. Since I have KRAS G12 D which to my knowledge hasn't been overly responsive to chemo, I'm extremely hesitant.
So, that's where things stand at this point.Take care everyone,
Ro
- Lisa Haines, Tom Galli and Deb W
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Thanks for all the good vibes everyone!
Sending the same to Tom and Robert's wife.
I haven't been NED since 2018 so it's not an expectation. However, it would be a great present to have it at least be stable from the last time (also this has never happened).
Have a great weekend everyone!
Best,
Ro
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Hooray Michelle!
I'm so happy that you got such great news. NED is the best!!!
Best,
Ro
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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
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Actually, how do I get into the patient zoom meet-up that's tomorrow (Friday, July 31st)?
thanks,
Ro
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How do I get into the Zoom meeting?
thanks,
Ro
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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
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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
- DebM and Rower Michelle
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Hi Mam12198,
I don't think it's necessarily a benefit to have the lung lobes removed. Everyone's case is unique. I had my lower left lobe removed in 9/2017 and my upper right lobe removed 10/2017. They got all the cancer and the masses were 8+ and 9+ cm in size. I had chemo and then the cancer recurred. They tried a phase I clinical trial with the personal cancer vaccine plus Tecentriq in May-June 2019 but it was stopped because I had 35% progression in the cancer. So, basically I have been waiting for a slot in a Phase I trial for a long time. There is no treatment for my kind of cancer (NSCLC-mucinous adenocarcinoma KRAS G12D)...So, waiting is all part of this process. My cancer has continued to grow and is in both sides of my lungs but it's considered a more gradual growth and I'm asymptomatic. Let me know if you have any questions and best of luck to you!
Take care,
Ro -
Pneumonitis
in MEMBER UPDATES
Posted
Amazing and inspiring!
Best,
Ro