Saturday, November 5, 2011

No More Neulasta

I started to feel well enough on Tuesday to fly out of town on a quick business trip. Just one night in Columbus, Ohio -- nothing major. My oncologist said I was fine to fly.

My husband dropped me off at the airport, I checked my bag and made my way to the gate just pulling my laptop bag. By the time I got there, I was completely winded and felt very tired. I figured it was just fatigue from chemo.

The next two days of my trip were more of the same or worse. I could barely walk the two blocks from the hotel to the office. I had dinner with a friend and had to stop and rest so I could try to get enough air into my lungs. I was having a really tough time breathing.

I got home Wednesday night - winded and tired. I slept great and went into the infusion clinic on Thursday afternoon for my Lupron injection. When I told the nurse practitioner about my shortness of breath, she was concerned. She measured my blood oxygen saturation level which went down pretty dramatically when they had me walk the hallways. She immediately sent me to the ER for a CT chest scan. She told me she was worried I had developed a pulmonary embolism (blood clot) from flying.

GREAT.

So off to the ER I went. The waiting room was full but they took me in immediately. No waiting for me. I saw the doctor, had some chest x-rays, saw some nurses, saw another doctor and then had my CT scan.

Then I waited for the results. And waited. And worried. I thought: "If this is a blood clot, they are going to keep me overnight and put me on coumadin. Yuck."

Then I thought: "What if my cancer has spread to my lungs? What if it isn't a blood clot? What if I have a tumor in my lungs?"

And then the real fear set in. I thought to myself: "You haven't taken this cancer thing seriously. You haven't really adjusted your lifestyle. You are still eating and drinking whatever you want. You haven't even gone to church once. What is WRONG with you?"

It was not a good time. Cancer meltdown #4 (or is this #5?) arrived.

But the CT scan came back negative for clots, tumors or anything else horrific. My lungs were clear. So what was causing the breathing problems?

Our friend Neulasta. I Googled it while the docs were all scurrying around and it looks like Neulasta can cause shortness of breath and difficulty breathing. Worst case, it can cause Acute Respiratory Distress Syndrome. Lovely. That is the last thing I need.

For now, I am feeling okay and breathing better. I am taking it easy and will see my oncologist next week. But one thing is definite - no more Neulasta!

5 comments:

  1. Hi Jen, I was just catching up on your last few posts, and although your stage in treatment was not all that long ago for me, it sure hits home. And some of your comments about not changing your diet, etc... I am here having finished all the major treatment and a couple of weeks into Letrzole, yet I find it hard to make changes too. It is easy for me to blame DH who makes coffee in the morning, and then I drink it; or pours me a glass of wine in the evening, and I don't refuse it. But I know it is really all me. I saw my oncologist last week, and he has made a referral for me to Dr. Amy Shaw, who is new in their practice and is putting together a survivorship program. My hope is that the program will help me to make little changes in my diet and activity level to ward off this evil C from ever taking over again.

    You are not whining. They say we are allowed to play the "cancer card" whenever we need it. And I'm finding that now that I am through with treatment, people see me as looking and feeling well, like everything is back to normal and full speed ahead. Sleeping till 9 to 10 am each morning tells me things are not back to normal. And preparing for my first mammogram in a couple of weeks also puts the fear back in me. Not to mention a dear friend who as been BC free for ten years who may now have a recurrence. Are we ever normal again? Maybe not. But we are stronger. AND we are here. I guess there is not much more we can ask for.

    Be strong. You are nearly done with chemo. I found radiation much easier than chemo, but still had some challenges. And now I am onto the 5 yr hormone therapy. You will be here soon to.

    You HAD cancer. You are a warrior and survivor.
    Best,
    Debbie

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  2. Found your blog just now after looking up "shortness of breath on Neulasta"... appreciate your attitude which seems to track mine pretty much - have gone through various stages (uterine cancer that my primary care physician did not act on quickly enough so that when surgery finally occurred, it was stage 3 with lymph nodes invaded...went through chemo and heavy radiation last year, found it had spread to lungs in January, and am back in chemo.) I still eat/drink what I want, do try to get more sleep than I used to, don't stay up late - had second Neulasta shot on Tuesday (this is Sunday) as needed to boost white cells so could keep going with chemo. Had Neulasta last year - no problems. On Thursday, I noticed myself being winded at the top of one flight of stairs. On Friday, I was winded just walking on a flat surface with the dog. Saturday, needed to sit down at a party (old person!). Today, am better but the shortness of breath certainly came on quickly. I had chest x-rays in June for blood clots - weren't any. Who knows now. Generally I can do what I want, am still working (for myself at home), have put legal affairs in order, am outplacing "things" to special friends as much as I can, and philosophically living in the present. My husband and I are going to Maui next month for 3 weeks to play golf.

    So..did you find that the shortness of breath passed? It seems to be passing for me. No other problems with Neulasta (or chemo which is Doxil as Cisplatin laid me low this time, probably due to bone marrow being fried by having so much radiation after the chemo last year) - no bone pain, no nausea.

    Anyway, we're still here - and at least for being winded, if it comes back, I can sit down.

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    Replies
    1. Hi, Carol. Thanks for finding my post on Neulasta. None of my doctors thought my shortness of breath was caused by the injection because they had never had anyone else complain of it. But the side effects clearly state shortness of breath and difficulty breathing are possible. I refused my Neulasta injection before my fifth and sixth chemos and I got through them much better. I could breath easier almost immediately and I wasn't as tired. My onc gave me two antibiotics to keep on hand in case I developed a fever. But guess what? I never even caught a cold! So - I am not a huge proponent of Neulasta. If you are around sick kids or exposed to germs a lot, then I guess it is worth it.

      Best of luck to you, Carol and I hope you enjoy your golf trip to Maui! That sounds like a wonderful respite for you!

      Keep me posted on how you are doing. Jen

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  3. Thanks for sharing this extremely informative article on breathlessness. I recently read about breathlessness on website called breathefree.com. I found it extremely helpful.

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  4. Your article gives me a clue to what might be the cause of my shortness of breath with minimal exertion. I finished chemo, radiation, more chemo for uterine papillary serous cancer in 2015. I had Neulasta after at least four chemo cycles. I felt strong during treatment but 6 months later noticed shortness of breath un characteristic for my level of fitness. It's very noticeable. It has never gotten worse. It has never gotten better. It happens walking with Any incline or about two or three minutes on flat surfaces. I have good oxygen levels and I've had a full pulmonary workout. I'm relieved to know that there's no pulmonary fibrosis, clots or cancer. But I'm still short of breath with minimal exertion and wondering the cause. I thought it was just a new normal, post chemo thing but perhaps it was the Neulasta.

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