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Labored breathing after Proton Radiation

Posted by moinmo @moinmo, Feb 23 1:33am

Hi! I have been a lung cancer patient since Jan 2019. I had a tumor wrapped around my left bronchial tube (small cell). I had chemo and radiation, the radiation was done in 15 days, twice a day, for a total of 30. It was successful but almost killed me. They burned my esophagus and I couldn’t eat or drink for almost a month.

Then a year later they found a small nodule in a shoulder lymph node on the opposite side of my body. They got that with radiation.

Another year later and they found a nodule in my right upper lung. Treated with radiation and it was successful. All good for 3 years.

This past August they found another nodule in my right lung. Very stressful 4 months. I was sent for radiation, they decided they needed to do surgery. On Nov 1st I finally seen the surgeon. He said I did not need surgery, that radiation was all I needed (thank God). They messed around for a month not communicating with me. I finally did my radiation prep appt, had a start date for treatment. The day before the start date, the radiation oncologist called and cancelled saying they wanted to do Proton radiation. I finally got my treatment the week of Christmas.

Now, it’s the end of Feb and I am experiencing weakness in standing AND breathing difficulty when I do anything physical. I am fine sitting . Is this normal for Proton radiation?

My new major problem is my husband, who carried our insurance, just lost his job. I am on SS but didn’t take Medicare since I had better insurance. I have applied for Medicare but I do not know how long it will take. So I cannot see a doctor until I get the insurance figured out.

I know this is long, but I’m kinda scared…

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frouke | @frouke | Feb 23 8:19am

I’m so sorry for all your suffering, it’s so heartbreaking to read what you’ve been through. I don’t have anything to offer you except my prayers for your healing, having problems with insurance is just unfair when you need it so desperately. I feel that you are a very strong person and I truly believe that everything will work out for you, I too am a lung cancer survivor and I understand some of what you’re feeling, a disease like cancer is time sensitive and it causes more stress when we’re dealing with delays in our treatments. I’m learning to pray more and more today and it really does make me feel better, I’ve never been religious but I believe that God is looking after us and will help us in our lives, I hope that everything will work out for you very soon, please don’t lose hope, God bless you.

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acguidon | @acguidon | Feb 23 10:16am

I am so sorry and thank you for sharing your situation. Bible scripture reminds us “For he will rescue you from every trap and protect you from deadly disease.” Psalm 91:3 In a world filled with uncertainty, God promises His protection over every part of our lives. We can trust in His divine security from physical and spiritual harm. Last week my PET Scan revealed that there was an increase in my lung nodules as compared to a previous PET scan that showed a decrease. I will see my Oncologist this Friday to see what she will recommend for treatment. When this world we live in is out of options, we need to cling to God's promises. I will pray for you and your husband.

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dougmck | @dougmck | Feb 23 12:03pm

Have you told your radiologist about the symptoms? I've had four lung nodules radiated in the last seven years and the last one was in 12/24 using the cyberknife. About a month later I started experiencing some serious wheezing and shortness of breath and learned I had radiation pneumonitis, which is fairly common. My radiologist has been emphasizing since she first treated me in 2018 that if I had any SOB to notify her immediately. This is the first time I've experienced it, and it was a little scary. I was put on prednisone temporarily with good results. I'm no longer on the steroid, but I had a CT this week and it looks like there's still some inflammation around the radiated nodule and I'm still a little SOB when climbing stairs. Talk to your radiologist, maybe he can prescribe a brief trial of prednisone to see if your labored breathing improves.

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Feb 24 7:34pm

@moinmo , you’ve had a difficult path over the past six years. Unfortunately these repetitive issues seem to pop up for many lung cancer patients. I’ll second Doug’s urging to reach out to your radiation oncologist, or even an emergency department if the difficulty seems to be worsening. Any change in your ability to breathe can be serious.
Hopefully your Medicare enrollment is processed soon.

Were the immediate side effects from the proton radiation more tolerable than your initial radiation treatments?

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1 reply
moinmo | @moinmo | Feb 24 8:12pm
In reply to @dougmck "Have you told your radiologist about the symptoms? I've had four lung nodules radiated in the..." + (show)
@dougmck

Have you told your radiologist about the symptoms? I've had four lung nodules radiated in the last seven years and the last one was in 12/24 using the cyberknife. About a month later I started experiencing some serious wheezing and shortness of breath and learned I had radiation pneumonitis, which is fairly common. My radiologist has been emphasizing since she first treated me in 2018 that if I had any SOB to notify her immediately. This is the first time I've experienced it, and it was a little scary. I was put on prednisone temporarily with good results. I'm no longer on the steroid, but I had a CT this week and it looks like there's still some inflammation around the radiated nodule and I'm still a little SOB when climbing stairs. Talk to your radiologist, maybe he can prescribe a brief trial of prednisone to see if your labored breathing improves.

Jump to this post

Doug…thank you so much! I had not heard of this before, nor was I warned about the possibility. I did call the radiologist and they put me on prednisone for the next 8 weeks. Pray that it works! Again, thank you!

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moinmo | @moinmo | Feb 24 8:14pm
In reply to @lls8000 "@moinmo , you’ve had a difficult path over the past six years. Unfortunately these repetitive issues..." + (show)
@lls8000

@moinmo , you’ve had a difficult path over the past six years. Unfortunately these repetitive issues seem to pop up for many lung cancer patients. I’ll second Doug’s urging to reach out to your radiation oncologist, or even an emergency department if the difficulty seems to be worsening. Any change in your ability to breathe can be serious.
Hopefully your Medicare enrollment is processed soon.

Were the immediate side effects from the proton radiation more tolerable than your initial radiation treatments?

Jump to this post

Hi Lisa! The side effects hit about the same time in both scenarios…about 3 weeks or so after treatment concluded. Thanks! I am now on prednisone.

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