First I’d like to say that after being off interferon for 3 weeks, I feel like I’m finally getting back to my old self again! I have more energy, I can focus on school a bit more, I can laugh about farts again… I feel pretty close to my pre-cancer self. I know that I will continue to have ups and downs—living with stage 3 melanoma is and has been an unpredictable ride thus far—but knowing that I won’t feel like I have the flu for a year is pretty exciting stuff.
However, If you read my last post you might have noticed I was going through a pretty dark time there at the end of treatment where I was really feeling the symptoms of cumulative exhaustion and an acute but transient chemical depression, both of which are extremely common side effects of interferon. When I first started writing this blog I felt it was important to be 100% open and honest about my experiences. I wanted to share everything including the highs, the lows, and the weirds that go along with living life with stage 3 cancer/treatment. I’ve been lucky that I have mostly had highs and weirds. Even though it’s hard for me to write bluntly about my difficult times (humor is clearly my main coping mechanism in life), I think it’s important to speak openly about depression and do my part to help chip away at the stigma and taboo around talking about it.
So pretty much after nationals I was completely miserable. It was a perfect storm with the ultimate season ending (post-season sadness) and the cumulative effects of the interferon finally catching up with me. I was feeling really depressed, weepy, excessively exhausted, unmotivated, and having a really hard time concentrating on school and getting work done. Reflecting back, I think I also had been so focused on my goal of getting to and playing in nationals that I hadn’t even really considered life after nationals. Whoops.
However, luckily for me I got to stop interferon, and almost exactly a week after being off of it I could feel my mood and body improving and recovering. Though the side effects of interferon can be acute and miserable, one of the benefits is that they completely resolve when you stop the medication. I am so lucky that I only felt like sack of rotten potatoes for about 10 days. I cannot imagine having 11 more months of interferon and the side effects that go with it. If I stayed on interferon, they have other interventions/meds to help with those symptoms, but I am just so glad that I don’t even have to go down that road. Other people aren’t as lucky as I am. Now that my mind is clear and my body doesn’t hurt so much I am able to appreciate how lucky I am that I am feeling great and that I get to start a different standard treatment for melanoma (Ipilimumab) that doesn’t cause depression/flu symptoms and has “significantly higher rates of recurrence-free survival, overall survival, and distant metastasis–free survival than a placebo” at 5-year follow up (Eggermont et al, 2016). However, as my dad and I mentioned in my last post, Ipi doesn’t come side effect free and I will be discussing that issue later in my blog.
Spooky Scans – Mon Oct. 31st
Before I start treatment with Ipi, I have to have my next set of full body CT scans. I will probably wear a costume because it’s Halloween. Even though it hasn’t been socially acceptable for me to do that for about a decade (I am almost 30), nobody can say anything because #ccard. The last time I had scans was the day I was diagnosed with cancer. Back then those scans were clear/normal, which is great news but since melanoma is an asshole I have to have scans every 3-4 months to keep making sure Melanie hasn’t spread or recurred to any of my other organs or tissues. Common sites of melanoma metastasis are the liver, lungs, bones, and brain so I will be having CT scans of my chest, abdomen, and pelvis as well as an MRI of my Brain.
We (both my family and treatment team) are expecting the scans to be clear and honestly I am not really worried about them. In the cancer community there is a lot of talk about “scanxiety” but it’s highly unlikely that anything has changed in the last 4 months. I will find out my results when I go in for my first Ipi infusion a few days later.
1st Ipi Infusion – Thurs Nov 4th
Lege, my parents, and I went back to MGH to meet with Dr. Lawrence a few weeks ago to have a discussion about Ipi and we all decided it was the best decision to switch. I will be starting Ipi Thursday Nov. 4th. Logistically it will be similar to Interferon Mondays in that I will have labs/blood work done first, then I’ll spend an hour or so with my nurse practitioner going over risks/symptoms and general education about treatment and then I will finally go upstairs to the infusion center to get down to business beating up Melanie. The infusion itself is 90 minutes but I assume there will be some IV hydration before and after and estimate I’ll probably be in the infusion chair for 2.5-3 hours.
The induction phase is one 90 min infusion every 3 weeks for 4 doses. The maintenance phase follows and is one 90 min infusion every 3 months for 3 years. All doses are at 10mg/kg for stage 3 disease.
What the hell is Ipilimumab?
First of all, don’t even try to pronounce it. All the cool kids in the know just call it “Ipi” and that’s what I will be calling it for now on because Ipiak;sdfjl is exhausting to type. You may also hear it being called “Yervoy,” which is its trade/generic name. So acetaminophen is to Tylenol as ipilimumab is to Yervoy. If you don’t get it it doesn’t really matter, just figured I’d attempt to clarify some of the confusion the health care industry creates with giving each drug 3 different names.
The short, not scientifically-accurate version:
Interferon (the drug I was on) gives you constant side effects of acute flu-like symptoms plus fatigue, muscle loss and depression for a full year and increases your chances of survival ~3-5%. Ipilimumab (the new drug I will be taking) will not have those daily crappy-feeling symptoms that interferon did, may increase my chance of survival by ~12-15%, but has a good chance of serious side effects (like putting a hole in my intestines) which are fatal in 1% of cases. A tough choice to be sure, but read on for more. I go into more detail about side effects and statistics starting after the “Ipi – the good the bad the ugly ” headerif you want to scroll past the science talk below.
My dad did a really great job explaining what Ipi is last week so you if you are just joining us now or you missed the last update and you want to know more see Update #10 by Dr. Eric Schwam(bomb). Or you can just read the summary below that I wrote for no other reason other than to organize and process the information for myself.
How Ipi Works
Ipi is an immunotherapy or a checkpoint inhibitor (CTL-4) that blocks a protein from deactivating the T-cells. T-cells are important immune cells that play key roles in cell-mediated immunology and normally function to fight off cancer cells or other pathogens. In English, this means that Ipi helps the body’s own immune system fight off cancer.
For all you medical/science people out there, my friend and former frisbee teammate Shirlee Wohl sent me this awesome figure and description showing how Ipi works. Coincidentally, she studied Ipi her first year of graduate school and made this figure to present in one of her classes, pretty cool!
(LEFT) T-cells (these are immune cells that fight off pathogens; blue circles) are activated when two T-cell proteins (blue Y-shape) interact with molecules (gray blobs) on cancer cells.
(CENTER) But after the interaction between the T-cell and cancer cell occurs, a protein in the T-cell (orange shape) moves to the cell membrane, where normally it shuts off T-cell function. This is to help regulate T-cells and prevent an excessive immune response. However, in the case of cancer, the T-cells are likely shut off too early to exert their full anti-tumor effect.
(RIGHT) Ipilimumab binds to the orange protein and blocks it from doing its job, so now the T cell remains activated and keeps working to fight off tumors and other pathogens.
I also want to make the point that immunotherapy is different from chemotherapy. Chemo essentially uses poison (cytotoxic agents) to kill cells that are rapidly growing. This is why patients undergoing chemo lose their hair and why I will not. Chemo has never been proven to benefit patients with melanoma, which is why we are obviously not going in that direction.
Ipi: the Good, the Bad, the Ugly
My oncologist sent me a copy of the article from the New England Journal of Medicine that published the clinical trial results on Ipi, which caused him and us to change the treatment plan. Below I’ve summarized the main data points as well as added in some of my own thoughts.
The Bad & Ugly – Ipi Side Effects
- Autoimmune side effects are common with Ipi. These involve reactions/issues with bowels, liver, lungs, skin, nerves and the endocrine system.
- 90% of patients in the Ipi trial had experienced adverse events of any grade (mild symptoms to death)
- Adverse events of grade 3 (severe) or grade 4 (life-threatening) occurred in 54.1% of the patients in the ipilimumab group
- Immune-related adverse events of grade 3 (severe) or grade 4 (life-threatening) occurred in 41.6% of the patients in the ipilimumab group. These include colitis (intestine problems that can lead to perforation of intestines), hepatits, skin reactions, nerve problems, vision problems, and hormonal gland problems.
- When you have an autoimmune side effect you likely have to be treated with systemic corticosteroids (prednisone), which come along with their own set of awful side effects that I really would love to avoid.
- In the ipilimumab group, 5 patients (1.1%) died owing to immune-related adverse events.
- only 13.4% of patients who started the Ipi trial completed the 3 year treatment protocol due to disease recurrence or ipi-related toxicity/side effects. However this could also be good because I won’t have to be in treatment for 3 years and still have the drug do it’s job.
If you just read the above section you are probably thinking… “that sounds pretty fucking terrible, why are you doing this?!” Well here is why:
- Ipi has significant increase in overall survival at 5 years of 65.4%, as compared with 54.4% in the placebo group.
- The rate of distant metastasis–free survival at 5 years was 48.3% in the ipilimumab group, as compared with 38.9% in the placebo group.
- There are no studies that compare Ipi to interferon yet, but the results from Ipi trials are much more concrete and promising than those from interferon, which didn’t always show a benefit from treatment, and the benefit was only ~3-5% improvement compared to watching/waiting.
- Even if I have to drop out of treatment early due to side effects, the efficacy of the drug is still proven (even if I only get 2-3 infusions).
- Overall, Ipi gives me a better chance of getting rid of Melanie or at least prolonging the time it takes for her to reoccur, if that happens at all.
- Unlikely to have acute flu-like symptoms, cumulative fatigue, or depression. Overall, day-to-day life will be much more tolerable than with interferon.
- 82-97% of autoimmune related side effects (not including endocrine issues which take longer to recover from and may require lifelong treatment) resolve with treatment within 4-8 weeks.
In my opinion the benefits of treatment outweigh the risks of some potentially really shitty side effects. Most side effects will eventually resolve and you can’t really argue with the fact that “the risk of death was 28% lower with ipilimumab than with placebo.” Ipi is pretty much my best option right now to destroy Melanie, so I’m gonna sit in that infusion chair and make her real sorry she decided to show up.
Brute Squad end of season Party: Our TEAM got together to eat, drink, and wear “fancy” clothes to match our gold medals. Our captains put together a little slide show of pics and awards for our TEAM. I thought mine was pretty hilarious and on-point. I don’t wanna boast but just want to mention that the actual stat-keepers at nationals were way off this year (if you decide to fact check). Also, I got iced. Thanks Aly.
Zach & Rivkah get married: This past week I got to see my cousin, who we lovingly refer to as Stix Slowenstein (a story I will tell with pleasure if asked), get married to one of the sweetest humans on this earth -the lovely Rivkah. They had a beautiful wedding in South Florida and you can’t really complain about going from 30 degrees in Boston to 80 degrees in FL. It was also really great to see lots of extended family who I haven’t had a chance to see since before my diagnosis, as well as spend more time with my family in general.
2 years strong: Lege and I celebrated our 2 year anniversary by waking up at 4 am to catch a 6am flight to the above mentioned wedding. But actually a couple of weeks ago we bought flights to Cuba for a week during my winter vacation so we will for sure celebrate then! Here are a few photos of us being completely normal
School: I am still surviving graduate school although I have lots of papers and exams coming up so I may be quiet for a while. I also performed my first GYN exam on a real patient in my advanced assessment class last week. A classic misinterpretation of the term”models” in an email from my professor meant that I didn’t know we were performing them on real humans until I arrived to class, exciting! I’ll spare you the details but it went smoothly and I’m looking forward to my future as a women’s health nurse practitioner.
Friends and family continuing to support me in my quest to schwam cancer
Shira -One of my best friends, gave me this card recently when I was at HER going away party (the asshole moved to San Diego). It’s typical of Shira to be giving out cards when she should be receiving them, that’s the kind of friend she is. Anyway, this is the most perfect card for me. I have never been the kind of person to say or believe “everything happens for a reason” nor am I religious. I understand that the whole “larger plan by some greater being” is comforting to some people, but it’s not for me. Luckily most people know me well enough not to say something like that to me, and I think I have enough self control not to punch them but to smile and accept their efforts to comfort me. You get it. Thanks Shira!
Above: Court Remm and my Nana supporting their schwamming cancer tanks. Me holding a sign made for me by my summer league team, flowchart.
My friend, fellow boston ultimate player, and cancer survivor Jimmy Foster and his girlfriend Sara Klein wore their schwamming cancer tanks to a game at Yankee Stadium. Don’t worry, they are both Boston fans living in NY. Jimmy also had a relative who was treated by my same oncologist for melanoma, SMALL WORLD HUH, thanks cancer. I also wanted to share this amazing piece written by Sarah (when she worked for Huff Post) shortly after Jimmy recovered from surgery for his cancer. It’s exquisitely well-written shows the unique perspective of the experience a significant other goes through when their loved one is diagnosed with cancer. I encourage you all to read it. Here’s the link: To Cancer, on Valentine’s Day
I am truly sorry these posts are only getting longer but part of the reason I include so much detail is so that potentially other people diagnosed with Melanoma can use my blog as a resource. You only get data and stats from evidence based research so I found it really helpful to read blogs of other young people going through a similar experience.
So scans tomorrow and treatment on thursday. I’ll update again as soon as I get my scan results. For now, Happy Halloween and Fuck Cancer!