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Need to decide whether to go for SBRT...


Babs

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Hi folks,

I haven’t posted in a while, but have certainly been staying up to date on you all.  I had a CT, PET and MRI last week.  It has been 6 weeks since my last 6 week treatment of Keytruda.  The scans showed no progression anywhere and in the original mass it showed it had decreased a little from the last scan.  I was at the Mayo Clinic for the scans and saw both my medical oncologist and my radiation oncologist.  They both are in agreement that it is VERY uncommon for my cancer to progress in only the original place and nowhere else.  In fact they both said that at the Mayo they wouldn’t see this on a weekly basis, more like every few months.  They said if I went forward with SBRT I could stand a 20% chance of curing this thing, but on the other hand because of its location, I could stand a 10-15% chance of developing a fistula in the trachea and that would be fatal.  My medical Onc recommended that I make that decision now and start it int the next couple weeks and stop the Keytruda treatments.  My radiation Onc disagreed and felt if we waited and did a scan again in 6 weeks if there was no progression to keep on the same treatment only going forward with the SBRT if we saw progression.  I went with his recommendation after talking with my medical Onc here and she agreed with the radiation guy too.  
 

Has anybody here had the SBRT and/or any kind of proton precision radiation and how did it go? 
 

Thanks in advance, 

Babs

 

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Babs: No progression is good so congrats and a small shrinkage is even better. I did not have the surgery but I would have made the same decision you and the radiation Onc. Hope the next scan will be even better.

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Hi, Babs,

I don't have a direct answer to your question (I haven't had ANY radiation), but what your oncologists said (if I understood it right) seems consistent with what my doctors have said. My medical oncologist stresses that whatever good response I'm getting in area of the primary tumor (and lymph nodes) should be duplicated for any mets that might exist. My oncologist doesn't see any benefit to radiation unless something changes and there is progression. The radiation oncologist I saw when I was first diagnosed with Stage IV wasn't considering precision radiation at that point, but was quite concerned about damage to the esophagus as a result of radiation. 

As exciting as the results from radiation can be, I think we need to remember that it CAN have harmful effects as well, and sometimes should be held back until/unless there is progression that calls for it.

I'm certainly not that informed about radiation, but just saying that I think if it were me, I'd be inclined to hold back for now. It sounds like you're doing great!

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Gary and Lexie,

Thanks for the reply.  It does help tremendously to hear others agree with your decision to hold off on the radiation for now.  It’s a HUGE decision and honestly makes me sick to think about it!  It also is a little disconcerting that my 2 Doctors at the Mayo Clinic aren’t exactly on the same page.  But for now, going to enjoy my time for the next 6 weeks until my next scan and hope for great results.  Good luck to everybody and hoping for an early spring! 
 

Babs

 

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Babs,

I've had SBRT. My experience with this precision radiation was after three attempts to treat my tumors with taxol and carboplatin. I also had a fistula at my bronchus stump that intruded into my trachea. Believe me, you do not want to experience that problem!

My SBRT treatment (called CyberKnife) was used to fry a particularly chemo-resistant tumor in my left lung after a pneumonectomy removed my right lung. It worked like a charm but the tumor was in the middle of my lung, not near any sensitive vessels or structures.

If Keytruda is working and it appears to be working in your situation, it makes a great deal of sense to keep taking the drug.

Stay the course.

Tom

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Hi Tom,

Thanks for your reply.  So a couple of questions.  What did they do to correct and/or take care of the fistula?  Surgery and how long after you started the SBRT did the fistula appear?  Also, was the SBRT done with a curative intent and was it successful?  Obviously.

 Any info would be helpful.  I am taking the safe route and playing it scan to scan, but part of me wants to go for it!!
 

Thanks so much,

Babs

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Babs,

My fistula problem was likely a product of first line treatment (chemo-radiation) to shrink the tumor in my right lung’s main stem bronchus to allow surgical removal of my lung. While not proven, chemo-radiation complicated suture healing resulting in two further thorasic surgeries to correct suture failures at the bronchus stump near my trachea. So our fistula cause is, might be, vastly different but 2 more corrective surgeries and 3 further stent insertions and removals over the course of a year were required to address my problem. Bottom line, you don’t want to get anywhere close to a trachea fistula. 

Yes, my SBRT was done with curative intent. And, it worked. A good thing because it was a treatment of last resort. I have a great deal of confidence in modern radiation techniques except when performed in an area near sensitive tissue or organs. 

My treatment detail is described in a book—Scanziety— shown at the bottom of my reply if you are interested. 

Stay the course. 

Tom

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Hi Tom, You seem to be the quite knowledgeable about SBRT and I’m quite the novice so if I could pick your brain I’d appreciate it. I finished my 5 treatments of SBRT radiation for nsclc in my lower right lobe January 29. I am not a good candidate for surgery, I have Lupus and Sarcoidosis in my lungs so radiation was decided. Did you have nausea and vomiting afterward? I’ve been put on anti-nausea med that helps sometimes but every time I cough I whoops ( nice way of saying vomit).  I also have extreme fatigue but I think this might be exacerbated by my lupus. Does any of this sound normal? If so how long does it last? My docs are conflicted. My nurse navigator even said she feels that if you’re feeling poorly the radiation is doing it’s job!  Thanks 

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Sally,

I had no side effects from SBRT. My experience involved 3 treatments, each 15-minutes long, performed on 3 successive days. But I don’t have the Lupus and Sarcoidosis you report. I’ve not heard of a vomiting problem associated with SBRT and unlike my first radiation treatment (30 days of fractional radiation) I did not experience any fatigue symptoms from SBRT. 

Your nausea does not sound normal in my experience. But perhaps your symptoms are driven by Lupus and Sarcoidosis.  Sorry I can’t provide an explanation. 

Stay the course. 

Tom

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On 2/21/2021 at 10:00 AM, Tom Galli said:

Sally,

I had no side effects from SBRT. My experience involved 3 treatments, each 15-minutes long, performed on 3 successive days. But I don’t have the Lupus and Sarcoidosis you report. I’ve not heard of a vomiting problem associated with SBRT and unlike my first radiation treatment (30 days of fractional radiation) I did not experience any fatigue symptoms from SBRT. 

Your nausea does not sound normal in my experience. But perhaps your systems are driven by Lupus and Sarcoidosis.  Sorry I can’t provide an explanation. 

Stay the course. 

Tom

After a rough weekend my doc has scheduled a cat scan and a swallowing study. They don’t believe radiation is the cause but might be a contributor in whatever is going on. Thanks 

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  • 2 months later...

Hi Tom, 
 Well they finally are on a track of what’s going on. They believe I developed a structure in my throat from GERD. The GERD caused the vomiting with nasal cavity impact. Swallow study showed Gastroparesis. The diets for gastroparesis and GERD are almost the opposite of each other so went with GERD diet. GERD slowly got better but with that they learned I had lung pain and was coughing up blood. Found Pneumonitis in both lungs from either radiation or aspirating vomit or from both. Am now on steroids (allergic to prednisone) 2 antibiotics, cough medicine, benzonatate pearls, anti-nausea, 2 protonixs. Last Thursday they said it didn’t seem that I was getting better so I am having a CAT on Monday 4/26. I am really nervous they are going to find the tumor has grown or spread. I’m hoping for pneumonia I guess. I think I might be too much in my head. Can you recommend anything to read about changing your outlook when your treatments are almost worse than the cancer. I know you’re not a pharmacist or a doctor but you are so knowledgeable. I’m sorry for this rambling vent, I usually try to keep my fears to myself, not so successful with that right now. 
Thanks for listening even if you don’t have any advice it’s comforting to know this forum is here. Sally 

 

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Sally,

My Lord!  You are really going through a lot and it seems these things hit you from different sides all at once.  Let's see what they do find with the additional scans.  You don't need to hide your fears; at least not with this group.  We've felt them, feel them and support each other through them.  With so much going on you must be feeling like you are "waiting for the other shoe to fall", but let's hope that the therapies now will reduce the effects o your GERD and that the lung pain is the result of the many other things going on.  Let's keep away from "conclusions" until we know what the problem is.  Any worrying you do won't change the outcome and only serves to put you under additional stress, weakening you more.  You need all your strength to recover from the GERD, pneumonia and regain normalcy.  

Stay strong Sally, you can get through this.

Lou

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Ditto what Lou said. I have no experience with any of these issues (other than the lung cancer itself, of course), but wanted to send you good thoughts and hopes for a speedy recovery. 

And good luck with the CT scan. FWIW, I recently had my own progression, and although it was disappointing, I didn't feel as horrible about it as I expected to. It's more like, "OK, what's the next plan?" There's almost always something else to try. I'm doing a clinical trial, so that's one option to look into. 

Hang in there!

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Let me just add my support for all you're going through... I too have had a few additional conditions that went along with my lung cancer diagnosis, but nothing like whar you are having to endure. Please try to not let your mind run away with worry. Lou is right; your anxious concerns about test results will have no effect on their outcome. You will only become stressed out waiting for the results. 

So...just stay positive and committed no matter what the outcome may be. Like LexieCat stated, "What's the next plan?" 

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Sally,

Sorry, I am a bit late to the party. First a couple of questions.

Did you have SBRT or another form of precision radiation? I reviewed your post history but didn't see that you had it. If you had precision radiation, how many treatments did you have and what was each treatment's duration?

I understand the GERD complication but not how it could connect with lung pain or precision radiation. Also if you had precision radiation, that treatment it is unlikely to cause radiation pneumonitis. But, unlikely is not impossible.

I've also had aspirational pneumonia after my second thoracic surgery. In my case, the intubation tube inserted during my medically induced coma caused my epiglottis to swell and after the tube was removed, liquids I swallowed went into my lung causing severe aspirational pneumonia. Coughing and induced coughing to remove the pneumonia was very intense, so intense, that I did cough up blood occasionally. My thoracic surgeon instructed respiratory therapists to keep inducing coughing because pneumonia (fluid in the lung) in a one lung patient is life threatening. The blood was attributed to highly irritated bronchial structures in my remaining lung. And I remember pain, particularly when I coughed. Perhaps these problems might be causing your pain or blood.

I think the results of Monday's CT will be instructive. We'll learn how bad your pneumonia is and also if you have any new tumors. I understand fear. These symptoms are very difficult to endure but I suggest we wait until we learn results of the CT scan before deciding on treatment. After all, we may be dealing with a bad case of GERD that might resolve with change in diet. The scan may show no tumors and no tumors means no treatment. Tell us about the CT scan result if you are comfortable sharing results.

Stay the course.

Tom

 

 

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On 4/25/2021 at 3:42 AM, Sally Lash said:

Hi Tom, 
 Well they finally are on a track of what’s going on. They believe I developed a structure in my throat from GERD. The GERD caused the vomiting with nasal cavity impact. Swallow study showed Gastroparesis. The diets for gastroparesis and GERD are almost the opposite of each other so went with GERD diet. GERD slowly got better but with that they learned I had lung pain and was coughing up blood. Found Pneumonitis in both lungs from either radiation or aspirating vomit or from both. Am now on steroids (allergic to prednisone) 2 antibiotics, cough medicine, benzonatate pearls, anti-nausea, 2 protonixs. Last Thursday they said it didn’t seem that I was getting better so I am having a CAT on Monday 4/26. I am really nervous they are going to find the tumor has grown or spread. I’m hoping for pneumonia I guess. I think I might be too much in my head. Can you recommend anything to read about changing your outlook when your treatments are almost worse than the cancer. I know you’re not a pharmacist or a doctor but you are so knowledgeable. I’m sorry for this rambling vent, I usually try to keep my fears to myself, not so successful with that right now. 
Thanks for listening even if you don’t have any advice it’s comforting to know this forum is here. Sally 

 

 

13 hours ago, Tom Galli said:

Sally,

Sorry, I am a bit late to the party. First a couple of questions.

Did you have SBRT or another form of precision radiation? I reviewed your post history but didn't see that you had it. If you had precision radiation, how many treatments did you have and what was each treatment's duration?

I understand the GERD complication but not how it could connect with lung pain or precision radiation. Also if you had precision radiation, that treatment it is unlikely to cause radiation pneumonitis. But, unlikely is not impossible.

I've also had aspirational pneumonia after my second thoracic surgery. In my case, the intubation tube inserted during my medically induced coma caused my epiglottis to swell and after the tube was removed, liquids I swallowed went into my lung causing severe aspirational pneumonia. Coughing and induced coughing to remove the pneumonia was very intense, so intense, that I did cough up blood occasionally. My thoracic surgeon instructed respiratory therapists to keep inducing coughing because pneumonia (fluid in the lung) in a one lung patient is life threatening. The blood was attributed to highly irritated bronchial structures in my remaining lung. And I remember pain, particularly when I coughed. Perhaps these problems might be causing your pain or blood.

I think the results of Monday's CT will be instructive. We'll learn how bad your pneumonia is and also if you have any new tumors. I understand fear. These symptoms are very difficult to endure but I suggest we wait until we learn results of the CT scan before deciding on treatment. After all, we may be dealing with a bad case of GERD that might resolve with change in diet. The scan may show no tumors and no tumors means no treatment. Tell us about the CT scan result if you are comfortable sharing results.

Stay the course.

Tom

 

 

Hi Tom, 

  I did have the SBRT, I had five treatments lasting approximately 40 mins each. About two weeks after SBRT I started to vomit, it felt like GERD pain not what I had heard pneumonitis felt like so we started treating it as GERD, a stricture was then diagnosed. Was having lung pain in right lung by then, not terrible though. Had the swallow study, gastroparesis. Ignored that and continued with GERD diet. Started to cough spray blood with pain now increased and radiating to both lungs. They feel the GERD or the SBRT or both caused the pneumonitis, most likely from aspirating vomit. X-ray showed fluid. Getting CAT today. All of you have helped me not get over my skis. I even felt better yesterday so my optimism is on its way back! Thanks everyone I truly appreciate all your wisdom and well wishes. 
Sally

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Sally. You are in my thoughts. Have faith..I like the path your docs are on. FWIW, I do not recall this combination coming up on the forum. So I think the preliminary diagnosis sounds hopeful?

Peace

Tom

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Yes still hopeful about original diagnosis. My one advantage to having sarcoidosis is getting scans every six months to a year for over 18 yrs. Anything changes it’s biopsied. 
Sally

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Good news! Had my scan Monday and my tumor has shrunk! I do have pneumonitis in both lungs but it aspiration pneumonitis from the GERD and not from the radiation. My lungs have become more fibrous and I will be getting a scope to check on the esophagus but I’m very relieved and hopeful. Thank you, thank you to everybody who reached out, you kept me sane! Peace

p.s. Oh and the radiation even shrunk some of my sarcoids!

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  • 4 weeks later...

I had SBRT (3 treatments) on my malignant lung nodule 1.3cm on my middle left lobe, and finished last September! I had a follow-up appt. and had a chest CT scan in February and my radiation oncologist said he was “cautiously optimistic” as it had shrunk from 15mm to 12mm. I didn’t think that was much shrinkage, but had no idea what to expect! I have an appt tomorrow morning with my radiation Oncologist and had a CT scan on Monday, so we will see if it has gotten smaller......I surely hope so, but I will post my results! I didn’t want to have the more invasive surgery and chose to try radiation

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