According to my latest CT scan on April 11, the cancer is gone. The tumor and enflamed lymph node were essentially obliterated by the chemotherapy and radiation treatments I had undergone over the previous four months.
During that time, a new immunotherapy drug that works with the immune system, Imfinzi (aka Durvalumab), had been approved by the FDA for use in patients with in-operable Stage III non-small cell lung cancer (NSCLC), whose disease has not progressed following concurrent chemo-radiation therapy (that’s Me!). What we hope it will do for me in the long run, is exactly what it is intended to do, which is give me the opportunity to live longer without the cancer metastasizing (spreading to other organs). That is great news because, up until now, there hasn’t been much in the way of further treatment for my type of lung cancer, beyond chemotherapy and radiation.
The decision to take Imfinzi was not an easy one for me. Even with all of the good things Imfinzi could do to help me, it also has some potential side effects that are pretty scary. Among other things, it can cause my immune system to attack normal organs, which can become a life-threatening issue. That last part was the hardest for me, as I felt like I had just fought like hell to save my life!
After a great deal of anxiety and deliberation with my family, friends and doctors, I decided to go ahead and say yes to Imfinzi. For one year (baring any complications), I am scheduled to receive an infusion of Imfinzi through my port every other Thursday, for a total of 26 treatments.
And so it begins…
Thursday, April 19, 2018 – Imfinzi #1. My husband, Brian, and I met with Dr. H prior to the first infusion. My nerves were shot and I was exhausted from not sleeping very well the night before, because I was so nervous. Dr. H told us that he and his staff would watch me very closely that day, to make sure I didn’t have any reaction at the infusion site. As I sat down in the all too familiar infusion room, I worked on taking calming breaths to bring my heartrate back to normal. One of the nurses came over to me with a much smaller IV bag than I was used to seeing (and it was only one bag, vs. the six I was getting with chemo). She told me my bloodwork, which they check at each visit, showed my white blood cell counts were low, but everything else looked alright. She hooked me up through my port and told me the total infusion would take about an hour. Brian covered me up with my blanket that I bring to every appointment (my friend, Cindy, made it) and I closed my eyes. Before I knew it, the IV bag was empty. I was told to call with any questions or concerns and then we were in the car, driving home.
We live pretty close to my oncologist, so we were walking in the door at home about fifteen minutes later. I was starting to feel really tired, so I laid down on the couch and put a cool rag over my eyes as I also felt a headache coming on. Brian went to pick up some sandwiches from Subway but, by the time he got home I was nauseaus and couldn’t eat anything. I tried to take a nap, but was unable to relax enough. I felt crappy and jittery the rest of the day and most of Friday, kind of like I was coming down with a cold, but I had a lot of energy. By Friday night I felt pretty good, so much so, that I remember thinking how much different this was than the effects of chemo and I was hopeful that this was it and I would feel great from here on out.
But alas…
Aside from already experiencing some symptoms of forgetfulness and confusion from what is known as “chemo brain”, over the next two weeks I developed a faint rash on my face and neck, had intermittent tightness in my chest, and heart palpitations. I wasn’t able to sleep more than six hours a night, and usually only about five. It seemed like I was either really cold or having hot flashes all the time. I was having headaches almost daily. When I got up from sitting in the same position for too long, it felt like the skin on my sides and legs was being stretched to the point of being painful. I was still losing my hair, but it was breaking off instead of falling out at the root. I had periods of nervous energy where I couldn’t sit still. I began to gain weight from fluid retention and, because of that, my hands and fingers were always swollen and sore. I couldn’t type, hold a pen for very long, wear my rings, make a fist or hold Brian’s hand without pain. My feet would swell and it hurt to walk, unless I sat with them up all day, which would cause the skin stretching sensation I noted above.
The thing is, these symptoms could be caused from any of the treatments I had had. Chemo and radiation side effects can sometimes take months or even years to present themselves. Reading through this, after typing it up from my notes, makes it sound so awful, but truth be told, I was glad that I didn’t feel nearly as bad as I did after a chemo treatment.
Tuesday, May 1, 2018 – I had a six-week checkup with Dr. M, my radiation doctor. He said I looked pretty good. He said to tell my husband that on a scale of 1 to 10, I was a 42 and that at my next appointment in April of 2019, he expects me to be a 100. Funny man, he is. He also said that I could develop breathing issues at some point, due to the radiation, and if that happens, we will deal with it then. I have always been a fan of yoga and had practiced it off and on for years. After this visit with Dr. M, I decided to work on practicing it on a daily basis. I knew, from past experience, that it would help me get my strength back and I wanted to work on deep breathing, in case the breathing issues he mentioned did show up. I also began strolling on my treadmill for a bit each day. After getting in 10,000+ steps a day before all this began, it was hard to see how little my ability was to get to 3,000 steps in a day now.
Thursday, May 3, 2018 – Imfinzi #2. This was the first time I had gone to see Dr. H by myself. Brian had taken so much time off work since all of this began, and I didn’t think it was necessary that he come to each infusion at this point. Dr. H and I discussed all of the side effects I was having. He suggested 10mg of Melatonin to help me sleep longer each night, as well as two Aleve each morning when I woke up for the pain I was having in my hands, feet and sides. He said if anything got worse after this round, to call his office and we would address it with another game plan. Once again, my blood work was alright, except my white blood cells were still a little on the low side. I was in and out of the infusion room in a little over an hour. I headed home, ate lunch right away (before any nausea could set in) and settled in on the couch for the rest of the day. Again, I was really tired, had a headache and just felt crappy with a side of the jitters. By Friday evening I had a burst of energy and felt pretty good again. This lasted until Sunday afternoon, when I started feeling run-down with almost flu-like symptoms. These symptoms came and went until Wednesday. Other than that, I was tired most of the time, but so jittery I couldn’t rest. The Melatonin didn’t seem to be helping, but the Aleve was. My hands were still tight and swollen, as were my feet, but the pain wasn’t as bad. The stretching sensations slowly began to disappear, but I was now experiencing a feeling of burning at each of the four spots where I was treated with the radiation.
Thursday, May 17, 2018 – Imfinzi #3. Once again, I met with Dr. H before my infusion. We discussed how I was feeling and he said that he believed the stretching and burning sensations were nerve related. I also told him about how jittery I had been feeling and he said to make note of how often and how long I was feeling this way and to let him know of any other changes. He told me that after this visit, I would only be seeing him every other time that I came in, unless there were any issues that came up. In – out – home in an hour and a half. Lunch and relax. Same symptoms as last time only the flu-like symptoms didn’t hang around as long and, thankfully, the jitters seemed to have calmed down as well.
Thursday, May 31, 2018 – Imfinzi #4. My first infusion without visiting with Dr. H beforehand. I went straight into the infusion room and settled in to have my port accessed for a blood draw and then the IV. I covered up with my blanket, popped my earbuds in, tuned to my relaxation radio station and promptly fell asleep. After what seemed like seconds, the nurse was nudging me to wake up so I could leave. Again, I ate lunch as soon as I got home and crashed on the couch for the afternoon. When I woke up Friday, I felt pretty good. Other than the usual headache and nausea (which didn’t seem to be as bad this time), I was able to start working on my blog, which I did most of that weekend.
Monday, June 4, 2018 – I went to get my hair cut, just to get the dry ends removed. The hairdresser was very gentle, as my scalp has been pretty tender since my hair started falling out. Once she washed it and towel dried it, I heard the words, “well, it’s starting to grown back and it looks like it may be curly”. WooHoo! I mean, tears of joy that it was starting to grow back, but curly??? not sure about that! I guess time will tell how crazy that will look, haha.
Thursday, June 14, 2018 – Imfinzi #5. I met with Dr. H and we talked about the same side effects I was having, but that they didn’t seem to be as bad as they were at first. He said that some of them might be caused from getting off of the chemo and radiation and then starting the Imfinzi pretty soon after. In other words, it’s kind of like the chicken and the egg theory. We may never know which treatment caused which side effects, we only know that I have them. The treatment was, once again, in and out and home. Same down-time and then, thankfully, not so bad.
Monday, June 18, 2018 – VACATION! Brian, our son Ben, and I boarded a plane to Myrtle Beach, SC. We were there for five glorious days to celebrate the end of another school year, the end of the nasty chemo and radiation treatments, the clear scans, the immunotherapy treatments that seemed to be going well, and life, just to celebrate being alive! I felt normal and happy and childlike in my excitement to be away from it all, if only for a short while. It’s true what they say…life IS good!
Thursday, June 28, 2018 – Imfinzi #6. Another infusion without meeting with the doctor first. My white blood cell counts were starting to come up and the rash on my face was completely gone. My hair was noticeably growing back in and it was making my long hair on top poof up all over the place. For some reason, I was starting to have panic attacks again. I am usually pretty good at figuring out the triggers that cause them, but not this time. I asked my support group mediator about it and he said that, maybe because my daily routine was now somewhat “normal”, my body was trying to figure out how to accept all that had happened and was still happening. I continued to walk often and to practice yoga each morning, once the pain and stiffness dissipated after the Aleve kicked in. Though I was still retaining weight from the treatments, I felt stronger, and my clothes were starting to feel a little less tight. When the panic sets in, I either try to meditate it away with relaxing music and calming breathes, or I turn on dance music and just move with it. Sometimes it helps, sometimes it doesn’t, and sometimes I just ride it out repeating the mantra, “this, too, shall pass”.
Saturday, June 30, 2018 – BBQ at my sisters to celebrate Independence day. We have had a very hot and dry summer this year, and I have mostly stayed indoors. This day I felt pretty good and Gwen has a nice pool, so I slathered on my sunscreen and parked myself on a raft. It wasn’t long before we were all playing with a beachball and goofing off. I was careful not to over exert myself, but by the end of the day, and the entire next day, I felt an exhaustion like I hadn’t felt since I was receiving radiation treatments. I also felt nauseas and achy all over, together with a killer headache. By Monday, I felt much better.
Thursday, July 5, 2018 – Road trip to visit Jake and Makayla! Brian, Ben and I piled in the car and spent the next three days at the King Family Farm (Makayla’s family farm – where she and Jake live & Jake farms with her father). This was prime corn picking time, so we got to help with shucking and bagging the corn to be frozen for the year. What an awesome experience! Along with farming close to a couple thousand acres, they also have a nice size garden, which Makayla and I spent some time in on Friday morning. Well, by late Friday afternoon and all that evening, while everyone else was enjoying BBQ and shooting off fireworks, I was feeling just as awful as I had felt the previous Saturday at Gwen’s house. I put two and two together, did a little Google research, and figured it had to be my exposure to the sun on both of those days. I would discuss this with Dr. H at my next visit, for sure.
Wednesday, July 11, 2018 – X-ray of my lungs – scanxiety again!
Thursday, July 12, 2018 – Imfinzi #7. Met with Dr. H to discuss the results of the x-ray prior to my infusion. He pulled it up on his computer and it looked like the lingering smoke from a large firework on a humid evening was covering my upper left lung (sort of like a tree made of smoke). Dr. H said it was scar tissue from the radiation treatments and that, hopefully, my body would eventually absorb it. Other than that, the x-ray looked fine. I asked him about the sun exposure possibly causing me to feel sick the week before and he confirmed that yes, the radiation from the sun, coupled with the chemo and radiation I had received, was more than likely to blame. Moral of the story – stay out of the sun for prolonged periods of time – and it may be this way for the rest of my life. I received my infusion, headed home for lunch, and prepared to be down for a couple of days – my new normal for now.
Wednesday, July 18, 2018 – I noticed that I was starting to feel like I couldn’t take a full breath. The same sensation that started this whole mess in the first place. My chest felt tight, off and on, as well. Even during yoga, I felt winded and I didn’t have any energy. I used my rescue inhaler a couple times a day and started laying around in my recliner, more often than normal, to see if it would pass. Needless to say, this played into my anxiety with a vengeance. It lasted on and off until the Tuesday before my next infusion.
Thursday, July 26, 2018 – Imfinzi #8. Arrived for my infusion, as early as they allow, to see if I could get some time to discuss my breathing issue with one of the nurses, because I wasn’t scheduled to see Dr. H this time. We chatted for a while and she said that it could be from the Imfinzi or the radiation or the chemo or all three or even the weather (Grrr). It seems like I’ll never know! She said that if it gets worse, to use my rescue inhaler four times a day or if I start coughing to try Mucinex D to see if that helps. Other than that, my blood work looked good and the infusion went as usual. For some reason, this time the treatment made me feel like I had the flu. Extremely tired, body aches, headache, hot and cold sensations and no appetite. This lasted through the weekend.
Wednesday, August 1, 2018 – Like clockwork, I began to experience the same breathing issues that I had the last Wednesday after my infusion, and it lasted for the same amount of time. Riding the anxiety train again, I waited it out until my next visit with Dr. H.
Thursday, August 8, 2018 – Imfinzi #9. I met with Dr. H and we discussed my breathing and the anxiety issues that have come along with it. He believes the root problem is from the Imfinzi infusion messing with the scar tissue on my lung from the radiation, and the anxiety is a result of not being able to take a full breath. Based on this, he decided not to medically release me to return to work until after the intense immunotherapy plan I am on is completed in April of 2019. We will have to play the wait and see game as to if any other complications arise. Blood work looks good. Infusion went fine. Home-lunch-rest. Over the next two weeks, the pain and stiffness in my hands and feet seemed to be getting worse and it was, and still is, difficult to walk down the stairs from my second-floor bedroom without a few unflattering words escaping my lips.
Thursday, August 16, 2018 – I had a dental appointment to fill a cavity in between my two back teeth on the left side. The worst part was the shots to deaden the area, but it went ok, or so I thought. After a couple of days, I started experiencing pain every time I drank something cold and then it started to hurt when I chewed anything on that side of my mouth. I went back to the dentist the following Thursday and she took a couple of x-rays and determined that I might need a root canal. (WTF – BOO!)
Thursday, August 23, 2018 – Imfinzi #10. I didn’t see the doctor this visit, but I mentioned the possible root canal to the nurse and she said that I would need to ask Dr. H before I did anything as she wasn’t sure it would be a good idea, due to possible infection. Ugh! Taking four Ibuprofen every six hours for the pain, which really only works for about three hours. Planning to call the oral surgeon to schedule a consultation and then talk to Dr. H. Hopefully they can recommend something for the pain until we can come up with a game plan. This infusion kicked my butt and put me on the couch for the rest of the day and most of Friday as well. Body aches and a headache, along with the pain in my mouth, left me exhausted.
Friday, August 24, 2018 – My favorite oldest boy and his bride came for the weekend to visit! Other than the toothache and swelling in my hands and feet, I felt ok. No specific plans during their stay, other than hanging out and playing games after dinner on Saturday. Sunday we visited my parents at their new home, and then the kids left to head back home. 🙁
Monday, August 27, 2018 – Spoke with the oncologist office and was given the go-ahead to see an endodontist for a possible root canal. Another “new normal” thing is that I will have to consult with my oncologist prior to having any medical treatments or tests for the foreseeable future.
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With 16 more Imfinzi infusions left, I am staying positive, loving life, and counting my blessings that I have such a wonderful family and group of friends.
“You don’t always need a plan. Sometimes you just need to breathe, trust, let go, and see what happens.” – Mandy Hale
“The only way to beat cancer is to accept the reality, embrace the pain and find the courage to move forward, one day at a time…”– anonymous
That is all anyone has. One. Day. At. A.Time. Be thankful for this day!
Love and Peace to All!
Kat
You are incredible! You are loved! You are treasured!
Keep on my dear!