I had built up my stamina to walk about three miles most days and was excited to be able to slow jog for part of those miles June 20 and 24. That was unfortunately the only days I was able to do this. June 26 the headache and cough got much worse. I took the maximum allowed on the packages of Excedrin Migraine, Tylenol, and cough syrup each day. They helped, but I was still exhausted, got out of breath whenever I moved, coughed whenever I moved or talked, and the headache was almost constant.
Tuesday, July 2, I saw my oncologist in preparation for Kadcyla infusion 6 or 14. She was concerned about the cough and sent me to get a chest x-ray after the infusion. Cough and headaches are side effects of Kadcyla but should not last the full three weeks in between the infusions. What concerned her most was that the worst week was the one just prior to the infusion. This is when I should have been better.
The x-ray showed I might have pneumonitis. Had to look this up - it is an inflammation of the lung. Pneumonia is a type of pneumonitis that is caused by a virus or bacteria, so an infection. If it is not caused by an infection, it is called pneumonitis. No wonder I felt so poorly.
I had a very bad case of pneumonia when I was 30 years old. Antibiotics did not help, and I was bedridden for 1 1/2 months. It was so bad it still scares me when I feel a cold move down to my chest. This was not as bad as that, but it was reminiscent of that pneumonia. It was scary, as I thought maybe the cancer had metastasized to the lung. The x-ray fortunately showed no tumors in my chest, but signs of pneumonitis. This was better news than what I feared.
It seems the inflammation had been caused by the radiation therapy. I read that only 5% of breast cancer patients have this reaction. I am just lucky 🫤 The inflammation does not start until one to three months after treatment but can start up to 12 months after.
My doctor lowered the dosage of the Kadcyla that day to see if it would help, then I went for the x-ray. Because of the results the oncologist suggested a five-day course of antibiotics and steroids. This did not sound fun. Steroids are not nice to take. I found this out through my last set of chem treatments.
We compromised; he called in the prescriptions to my pharmacy, and if I did not feel better after one week, I should start taking the medication. Tuesday, July 9 I was a little better, but not well enough. I was still having headaches and had coughing fits, so the following day I started taking the antibiotics and steroids. Sunday, July 14 I took the last pills. The drugs helped; I did not cough as much.
Wednesday, July 17 Craig and I drove to California to visit our children. On our way there the cough started getting worse again. It was not fun being cooped up in a car and coughing in Craig’s ear. It kept getting worse until Sunday, July 21, when I felt it was getting better again. It was not as bad the following day when we drove home.
The day after we got home, I was scheduled for my seventh Kadcyla infusion. That meant I would be halfway through! The blood tests looked good, but the Physician Assistant (PA) who met with me was concerned about the cough. He and my oncologist still thought it was from the radiation, although they could not rule out the Kadcyla being the cause.
My doctor suggested a CT scan on my chest. It provides more information than the X-ray. The PA asked if I wanted to hold off on the infusion just in case that was the culprit. This was not something I wanted to do. I want to be finished with the treatments by the end of the year. He suggested we lower the dose this time as well, so that is what we did. The Kadcyla infusions are now half-way done!
The following morning I had the CT scan. Unfortunately they needed to use contrast; the blue dye that makes me feel nauseous. It’s a good thing I have a lot of ondansetron left, the anti-nausea pills that melt in your mouth. They make a big difference.
That evening the PA called to inform me about the results from the scan. The cough is indeed pneumonitis caused by the radiation therapy. It would eventually go away on its own, but it would take some time, as it looks more severe than what they normally see, and part of my lung was collapsed. The percentage of women who have this happen is now down to 1% 😏 Lucky me.
Because of this I decide to go back on my favorite drug - steroids 🙁I started them on Thursday, July 25 - 60mg per day for 14 days, then 40 mg for 14 days, and 20 mg for 14 days. I am still taking the 60 mg, so don’t know how long for the cough to completely go away, but it is already better. Keeping my fingers crossed that I can get back to my longer and faster walks soon.
On Friday, August 2, I had a follow-up with my radiology oncologist to see how I was healing up. He confirmed that the CT scan shows that I have pneumonitis and that a small part of my lung is collapsed. He also said there is a very small percentage of breast cancer patients, about one half percent, that is more prone to have this happen. I am happy that not many women have to go through this. It has not been a pleasant experience.
Despite the current lung issue I felt it was right for me to go through the radiation. I had prayed and done my due diligence and had a good feeling about it. Still do.
Neuman-itis
(The goofy character Neuman from the TV show Seinfeld for those who are not familiar 🙃)
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