How many times can one say, “it’s always something?”

Roger T. Conway, Jr. October 1968 – July 29, 2020

So much has happened since early July, I was waiting to blog until I felt I could write about my brother’s passing. But, as it turns out, I just can’t. You can read Roger’s obituary.

The Rest

Kyle

On July 26th my son, Kyle, had a serious leg injury from a “tubing” accident. A boat sped by them too fast and too close which caused a large wake as they were nearing the boat they were tubing from, flipping my (large) son, his girlfriend and her two younger siblings into the air. Only Kyle was injured, catching his calf on a cleat on the side of the boat. It was a deep, wide, ugly, nasty, gash. I will not post photos here (they are not for the faint of heart). They rushed him to a nearby hospital where they decided to sew him up – only for him to get an infection two days later, sending him to the hospital for emergency surgery, where they thought he might have flesh eating bacteria.

It is very long story with a total of 3 surgeries, lengthy hospital stays, a skin graft, tremendous care from his girlfriend, Andreah, and many, many ups and downs. But 7 weeks later he was able to go back to work. He has no limp, it looks “pretty good” considering, and he hopes to get back to the gym soon.

Not the 2nd Inning Anymore (the continuation of my relapse)

I started the daratumumab/pomalyst/dexamethasone (although the first cycle on pomalyst, Smilow wasn’t sure about it because of my low blood counts – not “cancer counts” but CBC etc.) on June 18.

On July 1, my “cancer numbers” had increased 24 fold (24 times what they had been) – boom! Followed by a 37% increase, etc., etc. One evening, a week after my brother died, leaving my son in the hospital after one of his surgeries, I received a call from my Smilow oncologist, Dr. Stuart Seropian. He said we needed to start thinking about other therapies. He had lots of suggestions that I listened to walking through the parking garage and driving home, but not really able to take any of them. He wanted to know what Dana Farber thought, I did too.

For the first time, I had a hard time reaching anyone at Dana Farber, or getting a return call back. It felt like a long time, but as I look back at my online patient portal it was less than two weeks. I finally spoke to Tina (APRN) on August 10th while on vacation with my family in Maine. She said all of the symptoms I was experiencing (oh yeah, I wasn’t feeling really terrific, out of breath, headaches, tired, some low grade fevers) was because of the myeloma. She said she would confirm with Dr. Munshi but thought we would switch to Krypolis (carfilzomib), Cytoxan (cyclophosphamide), and dexamethasone, which is indeed what I started on August 17th. She also told me how sorry she was “that it came back”.

The new regimen is given 3 weeks on and one week off, the Krypolis and Cytoxan are given by infusion. The dexamethasone is a pill, and is every week. The Cytoxan is more like “real chemo” as opposed to the other regimens I have been on where there were basically no side effects. I am tired, a little nauseous (managed with a couple of anti-nausea meds), and my blood counts are taking a beating (ANC, so I am very immunocompromised and need Zarxio injections to get my neutrophils up; hemoglobin, so I am pretty anemic, headaches, tired, out of breath walking up the stairs, etc.; and platelets, so I bruise easily).

After a little mix up I found out that Dana Farber only wants me to get the Cytoxan on week 1 and 2, which is what we are doing now, and I think it will give me two good weeks out of 4 which sounds really good at this point. And even better news is that my meloma numbers are dropping:

DateKappa Free Light ChainsPercentage change from start of treatment
Aug 17251.47
Aug 2983.96– 67%
Sept 929.89– 88%
Sept 2328.03– 89%
Sept 2920.91– 92%
As a reference, the kappa free light chains should be around 1-2.

Fevers

The evening after my 3rd dose of Krypolis and Cytoxan I went to bed with chills. When you are getting chemotherapy that can lower your blood counts you are told to call if you get a temperature of 104° or greater. Around 9:00 pm I called as my fever rose above the limit and they wanted me to come in. Smilow has an Oncology Extended Care Clinic (ECC) so oncology patients don’t have to go to the Emergency Department and fortunately it was still open and had a bed for me.

When you go to the hospital with a neutropenic fever (I have my own personal experience with these and the experience of my first husband, Ken’s, as well). They culture and test you for every possible type of infection. And during the pandemic, a COVID-19 test is also part of that. And typically they don’t find anything but treat you with broad spectrum antibiotics anyway. This was the case for me, I was admitted and treated with several IV antibiotics. They also managed some of my treatment side effects. I was in the hospital for 3 days, and eventually they did find a little bit of pneumonia in the lower right lung. I had no symptoms of pneumonia and finally got home (after working in the hospital for a couple of days).

The next time I had treatment (2 weeks later as there was a week off in between) I again got a fever. I did not call Smilow. I was a bad girl. I just really, really didn’t want to be admitted to the hospital again. I monitored the fever, it went as high as 102.8°. But then it did come down and I was fever-free by morning. I “told on” myself at my next appointment and was advised that I really needed to call, which I agreed I would. That night (after treatment that day), again, I got chills, and again the fever went over 100.4°. I called right away. My APRN, Alfredo called me back. I told him I really didn’t want to be admitted, but I would come in for all the cultures, swabs, etc. He checked the ECC and they were full with no beds. He agreed that I could stay home and call him in the morning, and not take any Tylenol the following day so we could make sure the fever was gone. And it was. I continue to get a fever the night of the day of treatment, apparently it is just part of my body’s response to the Krypolis.

The Future

I’ll continue with this treatment. I’ll remain immunocompromised in the middle of a global pandemic. I closely watch our local state COVID-19 numbers, and the trend is not great. It is going to be a long winter. If I am playing the “pollyanna glad game”, quarantine during the pandemic does allow me to rest without pushing myself to engage in fun, active social activities, it’s the perfect excuse to lay on the couch after a long day of work.

I don’t actually know what the “plan” is. I go to Dana Farber in person for the first time in a long time on November 19th. Dr. Munshi (who is the myeloma leader for the CAR-T Cell Therapy program at Dana Farber) has put me on the list for their CAR-T cell therapy, it is still a trial but he expects approval around the end of the year. If I relapse again, that seems to be the next step, possibly with DCEP therapy (had DCEP pre stem cell treatment) prior to the CAR-T cell therapy, because my myeloma is a tough mother-fucker. But you know what, so am I.