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It's been a while


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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Deb,

How many times can a person have this [SBRT] treatment? It depends. As you mention it is targeted to a specific area and that gives radiation oncologists great latitude to treat "pop-up" mets as long as past treatment areas do not substantially overlap. 

In my survivor tenure, I've noticed that radiation oncologists are becoming bolder with their treatment approach. Some are even treating stage IV disease with multifocal tumors. And, these treatments are becoming more acceptable to insurance companies. Recall, I was one of the first to receive SBRT to a solid tumor in the lung. I had a $6,000 out of pocket charge because one of the mapping procedures was still coded experimental by the FDA. That $6,000 was the best money spent because my first SBRT treatment was my last and caused my long years of NED and eventually cure pronouncement.

Lung cancer is so dangerous because it recurs frequently after diagnosis. I wouldn't know why, but that is why I continue to be scanned yearly after 18 years of survivorship. Vigilance is our watch word. If a future scan shows a new met, let's hope the radiation oncologist can continue to fry it into oblivion!

Stay the course.

Tom

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Deb,

I know I can't answer any of your questions on SBRT, but I'm so glad to see you post again.  Sorry to hear about the recurrence, but happy to hear that they can "fry the little suckers" and keep you clean.  My thoughts and prayers are with you for a full response and great outcome.  Please keep us informed as you go through this.  You know you'll not be alone.

Lou

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Hey Deb,

You’ve been on my mind!  Wanted to share one of our group members has had five rounds of SBRT over a four year period.  Dr Camidge calls this “spot welding”.  The only issue she had was some nausea so you might want to ask about being pre-treated.

I would also be inquiring about Proton Radiation which is available at Mayo & KU which is far more precise and less invasive. 

I always admire your grace and determination.   Let me know how we can all help. 
 

Michelle 

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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

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Deb, I'm wondering whether a new biopsy might be in order. This is pretty standard procedure after progression these days. 

Best of luck with the radiation. 

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