(Originally published April 11, 2022)
The spleen has gotten worse since the last update. It's almost as swollen and sore as it was when I went into the hospital in January. I had hoped that it would go down over the week - no dice.
The oncologist was not happy. He was also prepared. This is the same pattern we saw during the last treatment cycle.
- Feel good week 1 post-treatment with significant spleen shrinkage and minimal pain.
- Spleen starts getting sore and swelling middle of week 2.
- Gets worse week 3 with further swelling.
Our conclusion: we need to abandon the chemotherapy and move to a second-line treatment.
Since I started chemo, the cancer has spread. I would get a promising week, then the spleen would come back with a vengeance. Plus, from even the first chemo, the cancer had spread through the bone marrow from 70% cancer to 90% cancer (hence why I am no longer generating my own blood). Not sure what the numbers are right now, but just the fact that the spleen is acting up again indicates that what we are doing is not working.
Furthermore, the fact that I need regular blood transfusions (we are right now looking at around every other week) means that I am objectively too sick for many clinical trials right now and might be at risk of being too ill for CAR-T therapy if we can't get the cancer under control.
The oncologist and I agree that we need to stop wasting our time with something that flat out isn't working AND is damaging my healthy cells along with the cancer cells.
I'm not entirely upset about this turn of events.
The oncologist hoped that the chemo would buy me 3-5 years. With the struggles I've been having with the Rituximab during treatment, how hard the chemo drugs are on the body, and this whole 6 cycle episode ending with MORE high-dose chemo and a stem cell transplant that will isolate me for 1-2 months in a hospital and likely another 3-6 months at home as my immune system rebuilds - the prospect of skipping most of that for something that has a higher probability of working is understandably appealing.
As of this writing, I am still independent, have my hair (even if it feels a bit thinner to me than it was a few weeks ago), and fully ambulatory (albeit slowly, occasionally painfully, and without much stamina).
The numbers from the blood tests and scans are worse than what I look like on the outside. I'm struggling to come to grips with all of this. Thursday's conversations made it hard for me to play the denial game around the gravity of my situation.
I'm still waiting to hear if there are any baseline tests that will be required as we make the transition to this next line of therapy. I also have some research to do over the next week around both the proposed therapy and other potential options.
With Mantle Cell Lymphoma, oncologists would much rather have me in a clinical trial since, even though the efficacy of the standard of care has improved significantly over the past couple of years, it's still incurable with a challenging prognosis. Add to that the number of cards stacked against me...
Let's just say that last week was not a good week.
Thankfully - there are some new drugs available for the second line therapy that are more effective than the chemo, even if it is just a bridge to the CAR-T therapy that shows the most promise.
Also, being able to take a pill each day vs. spending 3 days in a treatment chair and dealing with side effects for 3 weeks afterwards seems like a good trade-off. The goal is to get the cancer under control and buy me enough health and time to get me to the CAR-T therapy.
I'll talk more about what we are going to do next as we set up the next treatment plan over the next week.
Right after my last oncology appointment, I had a second opinion appointment with a doctor working with 2nd MD. We have access to this service through my partner's employer.
If I were in a "normal" cancer situation - eg. I didn't have a hyper-aggressive form of a very rare blood cancer - we would have done this before I started ANY treatment. Unfortunately, I'm not in a normal cancer situation and, thankfully, the team at 2nd MD have been incredibly patient and flexible.
Needing to make a treatment change seemed like a good time for a second opinion and I felt like I needed another set of professional eyes to confirm the path.
The doctor validated practically every decision my oncologist made along with the diagnosis.
He was kind enough to do a brief pass through the clinical trials during our session and gave me a couple of trials near me to take a closer look at, as well as some important search terms and things to look for during our research. He also told us what we can expect as we start applying for trials.
It was a productive, educational conversation. I have more to work with as I start this next round of research and planning.
The big takeaway from Thursday's appointments is that I need to start getting friendly with the bigger cancer centers in the area - Georgetown, University of Maryland, Johns Hopkins...
First - We need to start the process of preparing for CAR-T therapy since we have to move fast once the second-line treatment fails. The pill we are looking at is only a bridge and we are expecting to get about 6-24 months out of it.
Second - My case is complicated enough that becoming a patient with one of the larger cancer centers is going to give me more options and, likely, better access to clinical trials.
I have a lot of research to do over the next month. I'll share what I learn over the next few posts.
Resources for Second Opinions
- Some employers have a second opinion service available as part of their benefits package. We used 2nd MD and have been impressed with their flexibility and the quality of the conversations across everyone I have encountered and the advice we received from the oncologist we talked to.
- If you don't have access to a second opinion service through your employer, check with your insurance to make sure they cover (or require) a second opinion for your situation and to ensure that any doctor you choose for that second opinion is in-network.
- The American Society of Clinical Oncologists has put together a list where cancer patients can find a doctor for a second opinion.
- WebMD contains a general guide for when and how to get a second opinion along with a few questions to ask during your session.
- The Leukemia and Lymphoma Society provides second opinion advice specific to blood cancers, along with advice on how to change doctors if necessary. They have also created a series of guides containing questions for both your insurance company and your health care team.
- The American Cancer Society has developed a comprehensive checklist of the information the second opinion doctor will request before your appointment.