Deb W
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Posts posted by Deb W
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Hi everyone,
I haven't posted much the last several months - I can't explain why. This group has been so helpful to me as I continue on with Stage IV lung cancer. It's been two years now since my diagnosis of Stage 4...3 years since Stage 1. I've had surgery, chemotherapy, immunotherapy and I've been off of systemic therapy since I had the severe allergic reaction to Tabrecta one year ago. This past year I've had progression in the mediastinum and had a complete response with SBRT - 3 months later there was a suspicious area in the diaphragm which was treated with SBRT with a complete response. Last month cancer was found in my rib cage/pleura area - tiny enough to have radiation. I am again (3rd time) going to have SBRT and hoping for a complete response. Today I will have the planning session which lasts about 2 1/2 hours. I am probably going to have the same 2 technicians - and they could have been a little nicer.
My question is to those of you with experience of SBRT treatment - how many times can a person take this radiation? I understand it's targeted to the specific area and so there's little or no damage to other parts of the body. Is this going to keep happening? I wonder about that alot. I feel lucky that these areas are being monitored and found at an early stage and I'm so thankful that they are small enough to have radiation, but I wonder now when I go back in 2 months for a scan if it's going to be back again.
Deb
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I've been away for a while and just seeing this now, Colleen. I had SBRT in August for 15 sessions on mediastinum. It worked! I did have a burning feeling in my throat which made it difficult to swallow. It resolved in 2 weeks. I also had SBRT in January for 5 sessions on my diaphragm - the only side effect was fatigue which has gone away and my follow-up CT last week shows it worked again. Please let us know about your experience and how you're doing.
Deb
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Jack,
May I ask what happened with Tabrecta? There is another targeted therapy Tepotinib for the METex14.
Deb
- LouT, Justin1970 and jack14
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Dear Steph,
I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well. Her decision for comfort and peace are understandable. Please know you and your family are in my thoughts.
Warmly,
Deb
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Tom - This is so helpful. Thank you so much! Now I see why I've been so confused by the terms!
- LouT, Rower Michelle and Tom Galli
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Also, I had the Foundations 1 test done and a blood biopsy. The blood biopsy did not show the MET mutation.
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It took about 4 weeks for the biomarker results of the original tumor to come in. However, I received chemotherapy and immunotherapy immediately. I was also waiting for the results of a biopsy done on two lymph nodes (found later). It turned out that I had the MET mutation. I believe MET was discovered when the lymph node biopsy came back, but I'm not certain. I moved my care as the 2nd opinion oncologist is the one who discovered the MET mutation. It had been in my medical record but overlooked (again not sure if it was from the original tumor or lymph node biopsy). If MET had been discovered immediately, I believe I would have been put on Trabecta.
It's been a while
in MEMBER UPDATES
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As always this group provides me with so much information. I appreciate all of you so much. The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT. I had a complete response with both so I am hoping for the same this time. Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area. So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course.
Michelle, I had never heard of Proton radiation so I looked into it. It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist. and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things. So it all starts next Thursday. The weather looks good for the week so I'll be out on my walks and maybe even a little rallying in tennis! Trying to get it all in because I remember the fatigue hit hard.
Thanks again for all your support...Deb