Everything looks good to get the CAR-T cells today. White blood count is sufficiently dismal to make room for the CAR-T cells to move in and proliferate. And I’m getting some extra fluid for my slightly low blood pressure.
I passed my baseline neurological test with flying colors (now I sound like our former president). I asked them if I started to not do as well would I notice or would still think I was doing fine. They said I wouldn’t notice and they would still tell me I was doing great! I found this comforting. They also said neurotoxicity in myeloma patients getting CAR-T is not very common (but possible).
The cells are currently being thawed in a water bath and I should get them early this afternoon. It is somewhat of a non-event, but the attending did say congratulations on his way out 🍾
The nurse asked me last night if I wanted my cells blessed. This took me aback. And then I received some beautiful words from some friends and know that I am already blessed.
“Hope sees the invisible, feels the intangible and achieves the impossible”. Anonymous
May each cell be the hope we can’t see but believe will be the cure.
I bless you, and all your cells; I bless the cells you are about to receive; I bless the minds and spirits, and brains and bodies, and spirits of every person, and every energetic and vibrational presence involved in this process.
Sitting in the inpatient waiting area for my room to be cleaned. So close…
The FDA approved the expanded access request for me for the CAR-T cell therapy. The request still has to be approved by Dana Fatber’s IRB (Institutional Review Board) but that is being expedited. All of my orders need to rewritten and they are changing the dose of my chemotherapy because of the low platelets.
They anticipate starting the chemo tomorrow afternoon.
It’s been an interesting day because Alison and I had to check out of the hotel at 11 am. And COVID.
First we headed to the Blue Hills Trailside Museum (which is mostly like a small zoo), but it was closed.
From there we headed up the North Shore where we found delicious fish and chips and the Gloucester Fisherman’s Memorial.
Our last stop was Rockport, MA which is just lovely, hope to go back non-COVID (and feeling better).
All the while checking for email messages and finally calling the hospital and was told it would be ready around 5:00. Got up to the room around 6:30.
It was good to tool around in a car and see some sights (without exerting myself too much). This stay in the hospital could be anywhere from 10-14 days. No visitors allowed.
I am literally losing track of time. So rather than a detailed timeline I’m just going to explain where we’re at and why.
I am currently in a holding pattern in Boston waiting on an application for expanded access application from the FDA. On Friday the sponsor determined that my platelets did not meet the criteria for the clinical trial (required:50; mine:15). However, they did approve me for compassionate use pending the FDA/IRB approval.
The vast team at Dana Farber including my oncologist, Dr. Munshi, and Dr. Jacob Laubach, principal investigator on the trial have written a protocol for the use of the CAR-T cell therapies already engineered for me.
Timing: The application was sent late afternoon on Friday, now it’s the weekend, and Tuesday is MLK national holiday.
On Friday I received fluids, a unit of blood, and a unit of platelets. Today was an off day. Tomorrow I go for lab work and possibly more blood products. Sunday is also an off day.
Assuming I get approval from the FDA on Tuesday I will be admitted and get the lymphodepletion chemotherapy inpatient as there is concern that my low counts will go even lower.
Tuesday: drove to Boston while fasting since the morning. Had bone marrow biopsy with conscious sedation. Highly recommend the conscious sedation for this procedure.
Wednesday: fasted in the morning for a PET scan. In the waiting room for the PET scan received a call from the research nurse that neither the study nor my insurance would pay for the PET. A few hours later, they called and said insurance would pay for a full body MRI that afternoon. Later that afternoon they canceled the MRI and got the approval from the study for the PET.
Thursday (tomorrow): I have my line placed at 12:00 and the PET scan at 3:30. No food for me! I have to fast from 6 am to 6 pm.
The schedule has been changing minute by minute since I arrived. Hard to complain, they’re doing the best they can, and having several people calling to keep me updated.
All that said, the working title for this post was SNAFU – Situation Normal: All Fucked Up.
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.
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:
Kappa Free Light Chains
Percentage change from start of treatment
As a reference, the kappa free light chains should be around 1-2.
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.
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.
I haven’t been blogging in a while. Sometimes that means there isn’t much to say. In this case, I had things to say but they weren’t mine to say.
In April of this year, my younger brother Roger, started on the path to discovering the growing lump in his leg was a large soft tissue sarcoma. After fits and starts he found a great team of doctors at Memorial Sloan Kettering Cancer Center in NYC. He endured some very rough chemotherapy and then 5 weeks of radiation. On January 11th a team of surgeons will remove the tumor along with most of his quadricep muscle, they will shift nerves, blood vessels, and other muscles, and replace his femur with a metal rod.
To say he has endured all of this graciously is a huge understatement. HIs wife, Hope, has been his rock. We do what we can, mostly cheering from the sidelines as they are pretty self-sufficient. He posted on Facebook earlier this month, publicly sharing his journey:
I am not sure how we became “the cancer family” and yet here we are. On the upside, he is constantly being told how well he handles everything, how good he looks, how resilient he is (much like I was told during my stem cell transplant and recovery) – so there is that. We are tough, we are strong, we stay positive. We are surrounded by many who love us. And we hold each other close.
The photo is the three of us (my sister, myself and my brother). We pose and my brother says “Stick your tumor out!” and then after we settle down my sister says “Smile if you don’t have cancer!” Honestly, I almost peed my pants.
So we will laugh together, and cry in private. We will be strong, and be strong for each other. And our love will hold us up.
So, putting things in perspective I was officially diagnosed with multiple myeloma on May 5, 2014, rounding the corner to four years ago. (I only know this because I looked it up today.) I have been on maintenance therapy, post-stem cell transplant, for two and a quarter years (per Dr. Munshi, last week). I feel good. I am completely a symptomatic. My numbers look good.
And last week, Dr. Munshi told me I don’t have to go back to Dana Farber for SIX months – woot! No quarterly visits. Bonus!
It’s been a year since my stem cell transplant. The ‘birthday’ of my new cells was June 15th. And it’s been almost four months since I’ve posted.
The reason for not posting has been two-fold – super busy work/life stuff and not much cancer stuff.
I squeezed in a quick jaunt to Costa Rica with my son Kyle and my mom. It was beautiful, fun and full of adventure (zip-lining, Tarzan-swinging, waterfall rappelling, hiking, kayaking and driving on the roads). Our good friends Erica, Stacey, Lisa and my sister Kirsten threw us a fabulous engagement party.
Two of Scot’s daughters graduated (Maia from college and Tess from high school) and we threw them a graduation party.
We went to two weddings, one in Philadelphia and one in Georgia.
And my photography business has started the season with a bang – two weekends of three shoots each.
So as far as the multiple myeloma goes my myeloma numbers have remained low and stable (yay!). However, the revlimid has been messing with me a bit. First some nausea (enough to get me out of bed in the middle of the night to take something) and low platelets caused them to stop the revlimid three days early. And then the next cycle (two weeks ago) my ANC was 0.5 so they didn’t give me any treatment so I had almost two weeks off.
Last week I went to Dana Farber and Dr. Munshi changed my revlimid does from 25 mg to 15 mg.
In a recent conversation I had with Dr. Seropian at Smilow I said that treating this “is an art not a science”. He corrected me and said “a craft really, you create a product with an art”. So there 🙂
Writing this today while at Smilow getting poked and prodded – Zometa infusion, 5 vaccines (each a separate intramuscular shot) and my velcade injection. Fun times!
And last but not least enjoying every second I get with Kensley.
Last Thursday, March 3rd, my daughter gave birth to a beautiful baby girl, Kensley Sarah. And although I would have been equally happy had she given birth to a boy, there is something very special about the name they chose for their daughter. They chose a “K” name to honor Ken, my husband who passed away 4 years ago (see About Me), and not just any “K’ name, but one with his name in it. I love it. Additionally, they honored my family tradition, one that I think is very special as it is passed down through the women, giving the first born daughter the mother’s name as the middle name. It has gone thus: Elizabeth Mary, Barbara Elizabeth, Heather Barbara, Sarah Heather and now Kensley Sarah.
It was an arduous labor, but Sarah was a trooper and Demian steadfastly supported her. I was honored to be there to support her as well. Kensley was amazingly alert from the moment she was born – so much so I commented that she was nosy! Sarah is like an old pro at this mothering thing, relaxed and confident, caring and calm. I am equally in love with this baby as I am watching my daughter be a mother.
And now, just because indeed it is always something, a quick multiple myeloma update. When I went to Smilow for my velcade injection on Thursday my white blood count had dropped quite a bit (my ANC was 0.6). So They halted all treatment (did not get the injection and stopped taking the daily revlimid) until they check my blood work again next week. The upside is that I feel totally fine. The downsize is that I am at risk for getting an infection that would be difficult for me to fight off. And just a reminder that this is a long and winding road, this cancer thing.