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.
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!
I have been meaning to write this for a while now. And I’m not sure why I even feel I need to write it. Maybe it’s because losing your hair is such an emblem of being a cancer patient. Or maybe it’s because my hair is a big part of me, literally, my hair is typically gigantic.
So, the prospect of losing it, was for me like for most cancer patients, something I was not looking forward to.
First, to prepare, the trying on of wigs:
I thought it might be fun to try to be a blonde, nope. Shorter wigs are easier to care for, but it just didn’t feel right and soon enough I would have very short hair! I went with the Raquel Welch “Showstopper”. Something about a Raquel Welch wig made me smile.
I learned an important and expensive lesson after I purchased my wig. Connecticut has a statute that requires insurance companies to cover up to $350 towards the purchase of a wig when your oncologist writes a prescription for a “cranial prosthesis”. My wig cost $478. When I submitted my claim it was denied. When I questioned the denial I was told that I had purchased my wig “out of network”. I had never even considered that there would be In network places to purchase a wig. Anyone going through this – read your insurance coverage carefully!
So, after my DCEP treatment, and before my stem cell transplant I was told my hair would likely start to fall out in about two weeks. So I waited. And then this happened.
And this is what it looked like:
The next day I eventually cut it short to my head and put on my wig to go to my stepdaughter Tess’ junior prom pictures. No one I saw even batted an eye.
I found sleeping on that short hair actually hurt. Somehow the short hairs are pushed against the grain of the way they normally lay and it HURTS, a lot. So on Mother’s Day my daughter Sarah came over and we shaved my head. Just like that. Wearing the wig took some getting used to, for instance in this Mother’s Day photo it is clearly falling too low on my forehead!
I wore the wig to work every day. And everyone thought my hair looked so great! (Very few people at work, a handful really, knew I had cancer.) But wigs are uncomfortable, they itch, they tangle and they are hot, so at home it was often just my bare scalp.
And then there were the buffs and hats.
And everyone’s favorite the hat/hair!
Occasionally, I revealed my baldness in public.
Cancer on the Beach
But mostly I wore the wig, itchiness, tangles and all. At one point I even had to pay for a “haircut” for the wig! I needed to make it a touch shorter so it wouldn’t tangle so much on the bottom.
And then the growing out began.
Where it went from chic, to really not chic at all. My son Kyle was always the most brutally honest (not politically correct to share all the things he called me)!
At one point it was feeling oh-so-not-chic-at-all and in desperation I went for a haircut, where she thinned my hair in spots so it would lose some of it’s bushiness. It worked for a bit, although the growing out of the thinned layers was not so great – not sure I would recommend it.
And then there were the difficult times, which for the most part I found humorous (do excuse my mascara circled morning eyes in lots of these, morning hair was often the most “special”).
But one of my all-time favorites was when I sent a bad hair day photo to my nephew Hunter and he came back with the perfect response in seconds!
And I am still waiting for a great blowout…
In the meantime, some good hair days, some bad hair days…
But, really every day is a great day—and to be fair I’ll always have crazy hair!
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.
I have been a very bad blogger of late. What with a baby shower for my daughter, a week in Naples, FL with good friends, waiting for a baby to arrive, my sister’s 50th birthday, working, maintenance therapy, dealing with this mop of hair growing on the top of my head, and did I say waiting for a baby to be born!?!
Well, today is the due date and we are still waiting. My daughter wants to have a natural childbirth so we are hoping this starts moving along in the next few days so we can stop worrying about induction. Did I say “we”? Well, as her birth doula, I am worried about this too!
Two weeks ago I went to Dana Farber to see Dr. Munshi, I had not been since October. He took a while fumbling with the electronic health record, but after going back and forth he finally said, “We would say you had VGPR.” I knew what this meant and it was what I was expecting, but my friend Alison was perplexed., “What is VGPR?”Well, VGPR is a Very Good Partial Response. My m-spike decreased by at least 90% thus meeting the definition. So I did not have a complete response (or what some people might call remission), but I had a very good partial response. And my numbers could continue to stay where there are today for a long time and they cold also continue to go down a bit with the leftover effects of the melphalan (from the stem cell transplant) and the maintenance therapy that I continue. But as there is no “cure” at some point I will likely relapse, but there are lots of options (read:drugs) out therefor the treatment of multiple myeloma and so far I have only tried a handful, and those can also be revisited.
Here is the clearest information I could find about VGPR: “Based on their results, researchers concluded that achieving very good partial response should serve as a major treatment goal for patients and their physicians – not only does it correlate with better short- and long-term event-free and overall survival, but it also encapsulates a larger population of patients than complete response.” So VGPR, a fancy acronym for “you done good, doing great doesn’t happen very often, now stay there”.
I will try and be a better blogger, (I still have the story of my hair to write) but who knows what will happen after this grandchild is born!
(I haven’t been blogging much lately for two reasons. One, there isn’t much to say; that is there isn’t much going on in my multiple myeloma world. Two, I’ve been very busy with everything else – a hectic fall photography season and the holidays. So two “good” reasons.)
So this past year has been, well, huge. Just a few days over a year ago I told my kids and my family and friends that I have multiple myeloma. A year ago on January 5th I started treatment. I got the flu. I had a weekend hospitalization with a neutropenic fever. My daughter got married. I was hospitalized for 5 days for DCEP treatment. I bought a wig. I lost my hair. I had a stem cell transplant. My daughter got pregnant. I went back to work. My son got a dog. I had a busy fall season of photography shoots and editing. My hair started to grow back. I started maintenance therapy. And then the holidays.
The coming year is already chock full of things to look forward to:
Sarah’s baby shower
A trip to Naples, FL, staying with Dennis and Ruth Ellen and vising many others
The birth of my grandchild (sex currently unknown)
Graduation of two of Scot’s daughter’s (Maia (college) and Tess (high school)
A cousin’s daughter’s wedding in GA
Another week in the Hamptons
Our wedding (Scot and I)
And the ongoing maintenance therapy. And hopefully that is all on the myeloma front.
And of course the ongoing hair saga. More on that later.
As I wrap up this past year I want to thank everyone again for their love and support. You are my strength.