I started my maintenance therapy on January 26, so I am two weeks in. So far, so good. I feel good. I even started doing a few minutes of yoga every morning!
I was wrong (in my previous post); I have been on these three drugs before, in this combination, back in 2020 when I first relapsed. I had two rounds, it worked in the beginning but then the myleoma numbers started rising again.
This regimen does also include dexamethasone, but just on treatment day. Both my sister and my husband can attest to my chattiness and hyperness on these days.
On Friday I had my port catheter placed (see photo). It was done under conscious sedation. All went well, I was pretty tired and sore Friday night but getting better every day, if a little bruised.
That’s all I have to report, all numbers still look good. We are in (hopefully) a long period of no news is good news!
I went to Dana Farber today with Lisa. I saw Tina (APRN) and Dr. Munshi and they have a maintenance therapy plan for me. I am not sure why it was so confusing, but I had to listen to the recording I took of the appointment about 5 or 6 times, taking notes to understand what the plan is. And I am still not certain I have it right. It’s always a little bit complicated because drugs have chemical names and brand names and they are often used interchangeably in the same sentence. And Dr. Munshi talks fast, and everyone was wearing masks and Dr. Munshi (and Lisa) were double-masked.
This is what I think is happening starting next week (Jan. 20) or the week after (Jan. 27) depending upon how fast appointments and insurance approval can happen.
Month 1:
Kyprolis/carfilzomib (infusion), every week, 3 weeks on, one week off Darzalex/daratumumab (injection), weekly Pomalyst/pomalidomide (pill), every day, I think 3 weeks on and one week off, they didn’t mention this but that is how it is typically prescribed
I have been on all three of these drugs previously, but not together in this combination.
I may also need dexamethasone (steroid) with the Kyprolis for the first few infusions to avoid a reaction. Kyprolis is the infusion that burned my veins. I am considering getting a port. I am told that patients often put off getting a port, but when they get one they wish they had done it sooner.
In other news, I tested positive for COVID-19 on December 23rd. I had mild symptoms and I was able to get sotrovimab, a monoclonal antibody, from Dana Farber on December 27th. Scot tested positive 6 days later, also with mild symptoms. The good news is that I likely have some immunity now.
Currently, I am feeling really good. My energy and strength are back and I have no lingering symptoms of myeloma nor COVID-19. It has been lovely feeling good and not being on any treatment medications, but it also gives me some anxiety, my cancer being left to its own devices. So back I go to my friends, the lovely oncology nurses at Smilow!
The first week home I was very tired and still needed to take anti nausea meds 2-3 times per day. The last few days I finally feel a little better than that, not as tired, still have queasiness but I am not taking anti nausea meds any more.
I have to give credit where credit is due for this. I started walking every day (as required). And thanks to my friend Lisa (an oncology nurse) who asked me if I was walking and mentioned that it makes a big difference. Indeed it does.
Photos are from right before I left for Boston, but my hair looks exactly the same (maybe a fraction of a centimeter more of fuzz).
I was all packed up. Had all my outpatient meds. Six hour phosphorus infusion had just finished. Scot had crossed into Boston proper. The nurse just wanted to check my vitals one more time before they removed the PICC line. 100.8, surpassing their limit of 100.4.
Immediately back to blood cultures, IV antibiotics and at least 24 more hours here.
This has given me time to think about the pluses and minuses of being here.
On the plus side is the amazing nursing care. Many of the nurses have been doing transplants for several decades. Their knowledge and how it improves your care is immeasurable.
Also a plus, new and more anti nausea meds, and the staff’s commitment to keeping the nausea at bay.”If you even think you might be nauseous, ask for meds.”
And of course, the actual clinical care. I know Smilow does this largely out patient. I can’t see how. Here they are monitoring my input and output. Daily CBC, CMP, and electrolyte blood panels. On any given day I might be getting blood products and/or one or more of the following via IV: magnesium, potassium, phosphorous, or calcium.
There are just a few minuses (aside from missing home, family, friends, and of course Lola).
Imagine me having this sign at the foot of my bed for 16 days (it didn’t bother me at all).
My biggest complaint is the temperature control/air handling in the room. This is a constant pressure room, which means there is always air blowing out, keeping any germs from blowing in. There is air blowing right above my bed. The temperature of said air varies from freezing cold to steaming hot, at least a couple of times per hour.
Now there is a chance I get out today, but last night’s nurse was betting on Monday.
I have come to Smilow every other day since I was released from the hospital. Saturday and today my blood counts have been “tanking”. Both days my ANC has been 0.0 and my platelets have been in the teens. Today my hemoglobin is 7.2, so I need platelets and a unit of blood.
Of course there is a slight complication. I have my pre-SCT PET scan at 12:50. Not enough time to get blood and platelets. We’ll see if I can come back up for the blood after the scan.
I’m feeling pretty good, not great. Lots of headaches, nausea is still lingering, and I’m tired. I also feel oddly, just a little bit shaky most of the time. Not literally shaking. Just not solidly up and able. It’s hard to explain. But I did go on a walk with Scot and Lola yesterday. I took it super slow and stopped and took a breather as needed.
I am going to try and take another walk today if I get out of here at a decent time. I am going to count all of the walking all over the hospital too!
On April 8th my free light chain test results came back as undetectable. Which was awesome news. On May 6th they went up a tiny bit, but still not a trend, so not a worry. Since then, with every test they have increased. No bueno.
At the same time my ANC has remained very low (last week 0.3) unless I am giving myself neupogen shots.
The combination of the two things give my team at Dana Farber fewer options than they would like.
Tomorrow I will start a new treatment at Smilow: Empliciti/thalodimide/dexamethasone. It is a combination infusion/oral treatment, once a week for four weeks, and every other week going forward. I am not sure how long the process will take, I’ll learn more tomorrow. Off I’ll go, laptop in hand, working while I get treated.
The side effects are not supposed to be too onerous and mostly from the ups and downs of dexamethasone.
As always, I am grateful for my care teams at Dana Farber and Smilow and of course, the love and support from family, friends, and my work family at Yale Health.
It has been wonderful being home, after being away for a month and a total of 24 days in the hospital (24 days!!!).
I have had some very exciting news from Dana Farber. My free light chains (one of many myeloma markers) have completely normalized. My heavy lightchains have gone down by lalmost half and my M-Spike is also down by almost half.
Lisa, Erica, and Kirsten “watched” me this week while Scot worked. Next week (my last week that I am required to be watched) Erica and Sarah are on duty. Sarah will take me to my Dana Farber visit on Thursday (bone marrow biopsy, blood work, EKG, and 2 MRI’s because insurance is denying the PET scan again).
I’ve been feeling pretty well. My legs have been sore, I think from laying in a hospital bed for all that time. The only remaining bone pain seems to be my lower back. I had aggressive lesions at L1 and L5. I get tired and nap every afternoon.
When I am not at home being watched I am at Smilow (3 days a week) getting blood work and transfusions as needed. This is because of my lingering cytopenia. Here is some information about cytopenia from Healthline:
Cytopenia
Cytopenia occurs when one or more of your blood cell types is lower than it should be.
Your blood consists of three main parts. Red blood cells, also called erythrocytes, carry oxygen and nutrients around your body. White blood cells, or leukocytes, fight infection and battle unhealthy bacteria. Platelets are essential for clotting. If any of these elements are below typical levels, you may have cytopenia.
Types
Several types of cytopenia exist. Each type is determined by what part of your blood is low or decreased.
Anemia occurs when your red blood cells are low.
Leukopenia is a low level of white blood cells.
Thrombocytopenia is a deficiency of platelets.
Pancytopenia is a deficiency of all three parts of the blood.
The symptoms of cytopenia depend on which type of the condition you have. They can also depend on the underlying problem or condition that’s causing the low blood cell counts.
Symptoms
Symptoms of anemia include:
fatigue
weakness
shortness of breath
poor concentration
dizziness or feeling lightheaded
cold hands and feet
Symptoms of leukopenia include:
frequent infections
fever
Symptoms of thrombocytopenia include:
bleeding and bruising easily
difficulty with stopping bleeding
internal bleeding
My hemoglobin held from my transfusion at the hospital last Friday, until this Friday. My platelets did not fair as well. They were 24 last Sunday, 11 on Wednesday (I received a transfusion of platelets) and 10 on Friday (received more platelets). My ANC (absolute neutrophil count – what they follow for the leukopenia) has been ready at 200 even as I give myself Neupogen shots every day.
I did some research and found a study with this chart showing how long it takes CAR-T patients to recover from low blood counts.
The research nurse at Dana Farber threw out 2 months as a time frame. We’ll see.
What it means for my day-to-day is that I have to flush my trigger-lumen central line every day, give myself the shot of Neupogen and go to Smilow 3 days a week. If I need a transfusion the visit can be 4-6 hours.
Trying to be patient, but you know that’s not exactly my forte!
Let me also take an opportunity (again) to thank everyone who has reached out, sent food, babysat me, sent other gifts and treats. I am so blessed to be loved and cared for by so many. Everyone’s generosity has been mind blowing.
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.
If only things were so simple as the title of this post. But, dear reader, never fear – all is well.
I drove to Boston at 5:00 am on Monday morning, December 7th. I valet parked my car and left my suitcase with the front desk. And then I walked the mile to Dana Farber.
Then I walked the maze that is the Dana Fraber/Brigham & Women’s complex, all inside in overhead walkways. They schedule you to arrive at 9 am for a 10:30 procedure. Tending toward the prompt side, I had a long wait in the waiting room.
When I got down to the pre/post op area the nurse started running through her questions. She noted that I had told them I would Uber back to the hotel. She then asked me who would be staying with me? “No one.” “You are having conscious sedation, you need someone with you for 12 hours.” Of course, this would have been good to know when I had the lengthy pre-op discussion on Thursday night!! Oy. They landed on giving me less sedation. And they did, and I was fine.
The next day I arrived at the Kraft Family Dlood Donor Center where they do the apheresis. Yes, that Kraft, the whole place is strewn with Patriots memorabilia! I had a visit from one of the research nurses, she told me I might want to stay over night because some people get tired from the aphaeresis. Do these people not know that I am a planner and need all of this information up front?!?! Anyway, a mere five and a half hours later and the apheresis was complete. I loved my nurse who sat with me for most of those hours. I asked a lot of questions, he was very informative and had good advice. He also had a lot to say about the ways politics and medicine come to play. He kept pointing doing the street and referencing “Cambridge”.
Then I headed back to have the line removed, which was inconsequential, other than the slight discomfort of laying down flat on your back with your head below your heart for 30 minutes.
Next up was a special bonus visit, back up to the multiple myeloma clinic for an Xgeva shot because my calcium was elevated (12.9). And then the drive home, which did not include any traffic even though I left a little after 4 pm. I always like to point out whatever little upside there is to this pandemic – no outbound traffic on a Monday night in Boston!
Wednesday morning I started my bridging therapy at Smilow. And because my hemoglobin was low (7.9) I needed to get a blood transfusion.
I felt pretty terrible on Thursday and Friday, probably the worst I have felt since the stem cell transplant. Very out of breath and oh so tired. Saturday I went into Smilow as scheduled for a neupogen (zarzio) injection to make sure my white blood count doesn’t go too low. Now, get your score cards out: my hemoglobin was down to 7.7, and on the bright side my calcium was almost normal at 10.3. So, another blood transfusion. Four and a half hours there.
Calendar updates
Bridging therapy: December 9 (done), December 16 and 23 (all Smilow) Arrive in Boston: for the next phase of the overall CAR-T Cel therapy: January 13
I will stay in Boston from that date until 21 days after I receive the cells back (Day 0)(approximately January 20). However, they have warned that these dates are NOT set in stone and even mentioned that Dr. Munshi might want me to stay in Boston until 28 days after Day 0.
On Tuesday afternoon, exactly one week before my leukapheresis, I got a phone call from my regular APRN at Dana Farber, Tina Flaherty. She told me that my M-spike was 2.06 and to be accepted into the study it needed to be 2.1. (A higher M-spike = more cancer.)
She told me to get another protein electrophoresis done at Smilow. They were also going to try and talk the pharmaceutical company into accepting me since it was so close and all of my numbers qualified me.
As an interesting point about these numbers, Dana Farber gives the results to the 100th decimal place, so the same test at the same time would have had me at 2.1 since they only report to the tenth decimal place.
So I found myself hoping that my cancer had gotten worse in the last week. I also was much more anxious about not having the treatment than having it.
While I waited for the results from Smilow (Alfredo my APRN there was really great about keeping in touch with me and telling me what they knew, etc.), I got a pre-op call on Thursday for the placement of my temporary line (placed Monday morning, out on Tuesday morning). One of the last questions she asked was who was driving me home after the procedure on Monday? I said, “What? I need to be driven home???” Because it’s a short visit and I was assured I would feel good enough to drive home on Tuesday I am traveling up myself. So just another wrench in the works. My final decision is to still go by myself, if I have time I’ll walk the mile to Brigham and Women’s Hospital and then Uber back to the hotel. Tuesday I’ll drive and park at Dana Farber.
Friday late morning I got a call that they had a verbal on my M-spike and it was 2.4 – yay? 🙂
I will get treatment (“bridging therapy”) at Smilow December 9th and the 16th, the same regimen I was just on (Carfilzomib, Cytoxan, and Dexamethasone).
Hope to get some actual dates for the rest of the CAR-T cell therapy on Tuesday.
It's Always Something 