I too am at Mayo (2 years since diagnosis), and do PET scan and see RadOnc second week Jan. Ablation was mentioned last time...it is mentioned in article. May be a better choice for me. I too will have an interesting discussion! I will be interested in what they tell you.
Are you multifocal lung cancer? You mentioned radiation in both lungs...therefore multiple nodules. But were they considered metastasis or independent tumors?
Here is some more prep for you! I always like to define things:
What are interstitial diseases of the lungs?
Interstitial lung disease (ILD) is an umbrella term used for a large group of diseases that cause scarring (fibrosis) of the lungs. The scarring causes stiffness in the lungs which makes it difficult to breathe and get oxygen to the bloodstream. Lung damage from ILDs is often irreversible and gets worse over time
hat is the difference between ILD and PF?
There are more than 200 types of interstitial lung diseases (ILD), which are characterized by varied amounts of inflammation, scarring, or both, that damage the ability of the lung to absorb oxygen from the air. Pulmonary fibrosis (PF) means scarring of the lung and can be seen in many types of ILD.
What is another name for interstitial lung disease?
Interstitial lung disease (diffused parenchymal diseases) are a heterogeneous group of disorders characterized by fibrosis (scarring) of the lungs. These are classified on the basis of histopathological, radiologic and clinical parameters.Jul 31, 2023
What is the most common cause of interstitial lung disease?
Interstitial lung disease can be caused by long-term exposure to hazardous materials, such as asbestos. Some types of autoimmune diseases, such as rheumatoid arthritis, also can cause interstitial lung disease. In some cases, however, the causes remain unknown. Once lung scarring occurs, it's generally irreversible.Apr 25, 2023
hat are the 4 types of ILD?
The ILD is differentiated into four categories: lung-only (or native parenchymal) disorders, systemic disease-related disorders, exposure-related disorders, and vascular disorders (Table 2).Mar 21, 2022
Medicines
1. Bronchodilators can relax the muscles around your airways. This helps open your airways and makes breathing easier. ...
2. Corticosteroids can help treat inflammation in your lungs. You may take these with an inhaler or as a pill. ...
3. Antifibrotics (nintedanib and pirfenidone) can help slow down lung damage.
Mar 24, 2022
What are the 3 C's of interstitial lung disease?
Interstitial lung diseases classically produce the "3Cs": cough, clubbing of the nails, and coarse crackles on auscultation 6.Oct 25, 2023
I have been diagnosed with multifocal NSCLC, this is my eighth year dealing with it. Get scans at 120 day interval and had a nodule form 18 months ago - very slow growth. I’m at Mayo first week of January to see if it remains stable.
I strongly believe in educating myself so I can become a better patient and help my med team. The info you provided me helps a great deal, I’ve never had reference to ILD but it describes me to a tee. With the similarity of our conditions, let’s continue to trade notes.
I have been diagnosed with multifocal NSCLC, this is my eighth year dealing with it. Get scans at 120 day interval and had a nodule form 18 months ago - very slow growth. I’m at Mayo first week of January to see if it remains stable.
I strongly believe in educating myself so I can become a better patient and help my med team. The info you provided me helps a great deal, I’ve never had reference to ILD but it describes me to a tee. With the similarity of our conditions, let’s continue to trade notes.
Am very pleased to trade notes with you.
Now that it is the law that medical institutions must post test results and doctors' notes, it is very important to read everything posted. And many people find mistakes in their records, so it offers the chance to correct them. CT scan reports note many things - have you read yours to see what else they say about your lungs? My scans always noted interstitial lung disease, but I wasn't sure what that meant overall for me. But after the recent pneumonitis, I had more terms to google with.
I am multifocal with many nodules. They are watching two closely now and there are others but slower growing or ground glass.
I’ve recently completed SBRT on (3) NSCLC 1B tumors all < 24mm. I was excluded from other treatment options due to having stageIV Cardiomyopathy & severe emphysema. Radiation treatments were relatively easy although I did experience some breathing issues. Since 12/23, I have experienced increased shortness of breath, congestion & fatigue. I’m experiencing a bit of insomnia which I attribute to the “waiting period” I’m in until the follow-up Ct/PetScans. The nerve related pain in neck, back, shoulder & upper arm is unchanged.
I’ve recently completed SBRT on (3) NSCLC 1B tumors all < 24mm. I was excluded from other treatment options due to having stageIV Cardiomyopathy & severe emphysema. Radiation treatments were relatively easy although I did experience some breathing issues. Since 12/23, I have experienced increased shortness of breath, congestion & fatigue. I’m experiencing a bit of insomnia which I attribute to the “waiting period” I’m in until the follow-up Ct/PetScans. The nerve related pain in neck, back, shoulder & upper arm is unchanged.
@dave56pa I had similar situation. Stage 1b NSCLC, three tumors treated with SBRT in two sessions over two years. I have severe COPD so surgery wasn’t an option. Both times I developed pneumonitis 4-5 weeks after treatment. The symptoms were very similar, short of breath, fatigue, and congestion. Only when I had my follow up CT at 90 days, were the docs able to determine that I had the pneumonitis resulting from the SBRT. They put me on a full dose (60MG) of prednisone and I had relief within two weeks. I was told @5% of SBRT patients get pneumonitis. You may want to follow up with your doc to see if it’s a reaction to the SBRT.
I’ve recently completed SBRT on (3) NSCLC 1B tumors all < 24mm. I was excluded from other treatment options due to having stageIV Cardiomyopathy & severe emphysema. Radiation treatments were relatively easy although I did experience some breathing issues. Since 12/23, I have experienced increased shortness of breath, congestion & fatigue. I’m experiencing a bit of insomnia which I attribute to the “waiting period” I’m in until the follow-up Ct/PetScans. The nerve related pain in neck, back, shoulder & upper arm is unchanged.
Hi Dave. I have had 3 SBRTs. Have you reported any of these symptoms to your doctors? Did you change sleeping positions or pillows prior to these symptoms?
I’m sleep with a wedge pillow cuz I’m not unable to sleep on either side. The oncologist did prescribe oxy to get me thru the radiation treatments as having arms above my head was quite painful. I’m back taking Tylenol for now and hoping that the tumors/nerves respond to the treatment. Kinda hitting my limit with the discomfort threshold
I’m sleep with a wedge pillow cuz I’m not unable to sleep on either side. The oncologist did prescribe oxy to get me thru the radiation treatments as having arms above my head was quite painful. I’m back taking Tylenol for now and hoping that the tumors/nerves respond to the treatment. Kinda hitting my limit with the discomfort threshold
@dave56pa I had similar situation. Stage 1b NSCLC, three tumors treated with SBRT in two sessions over two years. I have severe COPD so surgery wasn’t an option. Both times I developed pneumonitis 4-5 weeks after treatment. The symptoms were very similar, short of breath, fatigue, and congestion. Only when I had my follow up CT at 90 days, were the docs able to determine that I had the pneumonitis resulting from the SBRT. They put me on a full dose (60MG) of prednisone and I had relief within two weeks. I was told @5% of SBRT patients get pneumonitis. You may want to follow up with your doc to see if it’s a reaction to the SBRT.
They say my pneumonitis in October was radiation-induced (had SBRT in August, 3 sittings). I ended my Prednizone Jan 1st, but have a chest soreness both sides on deep breath that has developed over last two months. I don't think it is from the May VAT wedge surgery, even though I still have numbness. Anyone else having such issues?
My pulmonologist and radiation oncologist have referred me to a medical oncologist. They suspect that the upper extremity pain is caused by the lung tumors. On a positive note, the head/arm tremors have lessened since SBRT.
F/U report from Dec’23 SBRT on right lung: Lower pleural parenchymal nodule has reduced from 1.7cm to 6mm. Middle lobe shows multiple small micro nodules < 2mm. Upper mass abnormality has decreased from 1.8cm to 1.3cm with stellate abnormalities and a linear visceral pleural tail. No lymphadenopathy or effusions. The scans did show hypodense areas within the iliac bones bilaterally. Follow Up PetScan in 3 months. dga
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I have been diagnosed with multifocal NSCLC, this is my eighth year dealing with it. Get scans at 120 day interval and had a nodule form 18 months ago - very slow growth. I’m at Mayo first week of January to see if it remains stable.
I strongly believe in educating myself so I can become a better patient and help my med team. The info you provided me helps a great deal, I’ve never had reference to ILD but it describes me to a tee. With the similarity of our conditions, let’s continue to trade notes.
Am very pleased to trade notes with you.
Now that it is the law that medical institutions must post test results and doctors' notes, it is very important to read everything posted. And many people find mistakes in their records, so it offers the chance to correct them. CT scan reports note many things - have you read yours to see what else they say about your lungs? My scans always noted interstitial lung disease, but I wasn't sure what that meant overall for me. But after the recent pneumonitis, I had more terms to google with.
I am multifocal with many nodules. They are watching two closely now and there are others but slower growing or ground glass.
I’ve recently completed SBRT on (3) NSCLC 1B tumors all < 24mm. I was excluded from other treatment options due to having stageIV Cardiomyopathy & severe emphysema. Radiation treatments were relatively easy although I did experience some breathing issues. Since 12/23, I have experienced increased shortness of breath, congestion & fatigue. I’m experiencing a bit of insomnia which I attribute to the “waiting period” I’m in until the follow-up Ct/PetScans. The nerve related pain in neck, back, shoulder & upper arm is unchanged.
@dave56pa I had similar situation. Stage 1b NSCLC, three tumors treated with SBRT in two sessions over two years. I have severe COPD so surgery wasn’t an option. Both times I developed pneumonitis 4-5 weeks after treatment. The symptoms were very similar, short of breath, fatigue, and congestion. Only when I had my follow up CT at 90 days, were the docs able to determine that I had the pneumonitis resulting from the SBRT. They put me on a full dose (60MG) of prednisone and I had relief within two weeks. I was told @5% of SBRT patients get pneumonitis. You may want to follow up with your doc to see if it’s a reaction to the SBRT.
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2 ReactionsHi Dave. I have had 3 SBRTs. Have you reported any of these symptoms to your doctors? Did you change sleeping positions or pillows prior to these symptoms?
Merry
I’m sleep with a wedge pillow cuz I’m not unable to sleep on either side. The oncologist did prescribe oxy to get me thru the radiation treatments as having arms above my head was quite painful. I’m back taking Tylenol for now and hoping that the tumors/nerves respond to the treatment. Kinda hitting my limit with the discomfort threshold
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Helpful -
Hug
1 ReactionDave- Perhaps you need oxy for a longer period? Or a pain management?
They say my pneumonitis in October was radiation-induced (had SBRT in August, 3 sittings). I ended my Prednizone Jan 1st, but have a chest soreness both sides on deep breath that has developed over last two months. I don't think it is from the May VAT wedge surgery, even though I still have numbness. Anyone else having such issues?
My pulmonologist and radiation oncologist have referred me to a medical oncologist. They suspect that the upper extremity pain is caused by the lung tumors. On a positive note, the head/arm tremors have lessened since SBRT.
F/U report from Dec’23 SBRT on right lung: Lower pleural parenchymal nodule has reduced from 1.7cm to 6mm. Middle lobe shows multiple small micro nodules < 2mm. Upper mass abnormality has decreased from 1.8cm to 1.3cm with stellate abnormalities and a linear visceral pleural tail. No lymphadenopathy or effusions. The scans did show hypodense areas within the iliac bones bilaterally. Follow Up PetScan in 3 months. dga