**If you generally stay up to date on my posts and want to scroll quickly to the most recent update, I have highlighted the heading this color to catch your eye** (normally I would make the text color teal but it didn’t pop out enough for this situation)
December 2009 – I am a Senior at Umass Amherst. I have an itchy mole on my back that is hard to reach. Do you know how annoying it is to have a perpetual itch that you can never reach? I have my mom schedule an appointment with my Dermatologist back in Westborough. The dermatologist takes a small punch biopsy of the mole on my back.
January 2010 – biopsy comes back as a regular spitz nevus. Spitz Nevi are benign moles that are common in kids but rare in adults. In very rare cases Spitz nevi can act malignant so the best practice is to remove with a wide local excision. I have a wide local excision of the mole on my back with clear margins. I forget this ever happens, except for when people ask about the scar.
Fast forward to 2016
mid/late February 2016 – I am in the middle of Spring Semester of my first year of graduate school. I discover a pea-sized nodule (Spoiler alert – this is Melanie, but I don’t know it yet!) just below my right axilla. At the time I am worried it might be breast cancer.
May – I see my PCP who refers me to a surgeon, who advises me to get an ultrasound. The radiologist determines the ultrasound is benign (non-cancerous). They call it a cyst. They tell me I don’t need to do anything about it and send me on my way. I am suspicious and doubtful that the nodule is a cyst, but understand nursing school has made me more of a hypochondriac…
June 6th – Lege and I move in together in Cambridge
June 16 – this lump is now the size of a small marble and visible when I lift my arm up. The surgeon and radiologist tell me it would only be for “cosmetic reasons” to have it removed, but the fact that it was growing and it was firm, just didn’t seem right to me. I decide to have it removed and biopsied by the surgeon, anyway.
June 28th – I go to my surgical follow-up expecting it to be no more than 5 minutes. The Surgeon informs that she was “surprised” to find out that what they removed from me was actually lymph node overtaken by cells that stained positive for several malignant melanoma tumor markers. AKA it was a fucking tumor. To say that I was shocked and upset, was an understatement. This means I have stage 3 cancer. I have no visible primary lesions (usually how melanoma starts). I call my parents and they come running to Cambridge Health Alliance. I have CT scans and blood work that very day, and they all come out normal/clean. We can’t detect visible tumors anywhere else in my body. My blood work is normal except for one of my liver readings.
June 29th – We go back to original dermatologist in Westborough. She tells us that this thing in my lymph node could potentially be from the spitz nevus on my back and could be less aggressive. We get our hopes up. She does two more skin biopsies on other moles or birthmark, which both come back negative.
June 30 – I get a Brain MRI. It comes back normal.
July 1-4th – I go to the US Open with Brute Squad and we win it all!
July 5-8th –I meet with Melanoma Oncologists and Surgeons at Dana Farber & MGH. After 8 hours at Dana Farber they confirm that what is in my lymph node is definitely Melanoma and the “spitz nevus” on my back was actually misdiagnosed 6 years ago and was Melanoma all along. We are crushed.
July 13 –We decide to get treatment with the Melanoma team at MGH. Surgery is scheduled for this coming Friday where I will have 2 wide local excisions (WLE) around the scar on my back and also the new site under my arm.
July 22nd – Surgery at MGH – 2 wide local excisions. Surgery went well with no surprises. Discharged home on tylenol. I am told that I can play in the tournament next weekend! But will have to be vigilant with wound/incision care. I’m hoping to get the pathology report in a week or so to make sure they got clear margins and then we can continue with the logistical details pertaining to the clinical trial.
Some gnarly pics of my incisions
July 29-31: I go to Colorado and play in the Pro-Elite Challenge tournament with my team Brute Squad. We lose in the finals and take 2nd place but I am happy with how I played and arrived home without any issues or complications related to my incisions! Huge shout out to an unnamed TEAMmate for sneaking extra gauze and tagederm to help keep me in one piece throughout the weekend.
August 2 – I got to MGH for my follow up with my Surgeon Dr. Cusack. He is impressed by all my bruises and the fact that I am still in one piece. Nobody else is surprised. He takes my stitches out (yay!), and applies steri-strips (boo). He tells me that they will come off in 7-10 days or sooner thanks to my active lifestyle. He also tells me that my pathology report is CLEAN! No remaining cancer cells in my body! While this is expected news, it is still good news and means we can move forward with applying to the clinical trial.
August 11 – follow-up with a women’s health/fertility specialist to discuss my options of potentially being able to have babies in the future. Don’t get too excited/nervous/terrified everyone – this is solely future planning. Results: I have normal functioning ovaries and a normal egg reserve for a woman my age! I don’t need to do anything now (phew).
August 15-19th: Finals week for school and hopefully a few days spent with the Freedman Clan on the north shore.
scars are healed!
August 20-21st: Tournament in Vancouver, WA (Pro-Flight Finale). We come in 2nd place. My team sports the amazing tanks they made to support me.
August 22-26: Family vacay on the cape!
August 23rd: I find out I am randomized to the standard treatment arm – Interferon 😦
This involves interferon infusions 5 days/week for 1 month for the induction phase. Then the maintenance phase involves subq injections that i give myself 3x/week for the rest of the year. The infusions are outpatient so I will go to MGH for the treatment and then go home a couple hours later.
The Induction Phase: High-dose interferon infusions
Week 1 August 29-Sept 2
August 29th – Day 1 – I get labs, meet with my oncologist and NP, and meet my infusion nurse for the first time. The infusion goes seamlessly. I was smiling throughout the whole process because i was excited to finally start kicking Melanie’s ass on a cellular level. About 1 hour after I get home from the infusion I start getting mild flu-like symptoms. This progresses to full blown flu-symptoms on steroids where I have a high fever, full body shakes, pain everywhere, a throbbing headache. I am just writhing around on my bed moaning while Lege clutches me and does his best to keep me from slithering off the bed. Finally I figure out how to dose the ibuprofen and tylenol and the symptoms subside and I sleep well through the night. Here’s a nice little picture of during and after the infusion. The next morning I feel, surprisingly great.
Austs 30th – Day 2 –The infusion goes fine again. I am out of there in 2 hours. I feel better than I did day 1 when I get home. This time it takes 2 hours for symptoms to kick in. I have a throbbing headache with mild fatigue and body aches all day. The tylenol/motrin stops the body aches but I have the terrible throbbing headache for 12 hours. Again, I feel like a fucking sunflower in the morning, like nothing every happened the day prior.
August 31st Day 3 – I meet my other infusion Nurse and he is a doll. I tell him about my symptoms and he give me double the amount of hydration than usual. I pee constantly. Shira keeps me company this day during the infusion and we tear apart a people magazine cross-word. After the infusion I go home and have lunch. I know that I will have a few hours of no symptoms so I decide to go to yoga. I biked there! I did Yoga! I felt GREAT! My only symptoms were mild nausea and fatigue later on. I went and saw a movie at the movie theater! I was traumatized by sexualized processed foods (Sausage Party).
September 1st – Day 4 – Same old, same old. Lege stays with me through the infusion this day. I am go home and I feel good. I got to Brute practice and participate in the WHOLE thing! No fatigue or anything! Only symptoms are mild nausea before bed.
Sep 2nd – Day 5 – Coug, Amber, and Vicki come and hang with me at my infusion. I destroy everyone in scattergories. Vicky N. comes over after and we do work then toss the frisbee. I have finished week 1 of treatment!!!
Labor Day Weekend: It turns out that cancer doesn’t grow on weekends or holidays! No infusions until Tuesday. Lege and I did not make plans because we never know how I’m going to feel. Since I have felt good we are going to try to stay active while I still can. We hike 9 miles, the franconia notch traverse in NH.
Week 2 HD Interferon Infusions
Sept 6 & 7 –Nausea & vomiting, miserable times. Migraines and extreme fatigue.
Sept 8-9th – I feel better, I go to practice and throw the disc with friends. I received 1-1.5 liters of saline each day!
Sept 10-11th: Regionals with Brute Squad at Fort Devens. I GET APPROVED TO PLAY! We win!
Week 3 High Dose Interferon infusions – Canceled because my liver hates me.
Monday Sept 12th – I go for Monday labs and a meeting with my healthcare team before infusions. They alert me that my liver function tests (LFTs) are off the charts and I won’t be able to have any infusions this week. I am upset that I lose a week of treatment but it’s nice to have a week off to eat. My doctors tell me that it’s a good sign that my liver is so upset because it means my immune system is alive and well and hopefully kicking out melanoma cancer cells as well as my liver cells. Oh yeah, the first day of my second year of grad school was today. It was okay.
Wednesday Sept 14th: I go in to retest my LFTs. They are downtrending but not low enough to start treatment again until next week.
Monday Sept 19th: I go back to MGH for labs and my weekly appointment with my healthcare team. I find out my LFTs are still too high to restart treatment and they cancel my infusions scheduled today through wednesday. I am advised by my oncologist to drop from the clinical trial in order to make-up the 2 weeks of induction therapy I have missed due to liver toxicity. This just means I will continue with treatment with interferon but will not be followed in the clinical trial. This way we have a more flexible schedule of treatment. The clinical trial does not allow for make-up of missed infusions due to toxicity and my treatment team feels it’s important that I get the full 4 weeks of high dose infusions. So I decide to drop from the clinical trial.
Thurs 9/22 – Mon 9/26 -> Week 3 of High Dose Induction therapy
Nothing too crazy happens this week, pretty standard week of treatment. I actually did really well in terms of symptoms. I was able to figure out the perfect schedule so that I wasn’t having acute symptoms for longer than 30 mins on the first 2 days. However Saturday night-sunday morning I was having weird RUQ pain, essentially where my liver is. I didn’t have any juandice and my vitals were stable so we never really did anything. Retested my LFTs and they were actually lower than when we restarted treatment. Eventually it went away and hasn’t come back.
Sept 29th-Oct 2nd Nationals: Brute Squad are your 2016 USA Ultimate National Champions in the Women’s division!!! Boston actually sweeps all three divisions, big shout out to Slow White and Ironside! In terms of symptoms, this was the first time I was feeling the fatigue in a major way. I was getting 8+ hours of sleep a night but felt like I could have slept all day. I would sprint down the field and be significantly out of breath. Despite this fact, I somehow still played pretty well and helped contribute to Brute Squad’s 2nd straight National title! My parents reminded me that my oncologist told me on 3 different occasions that I would not be able to play in Nationals, but I did and I even had a few highlights.
Oct 3-Oct 7th -> Week 4 (FINAL) week of high dose interferon infusions
This week sucked. Except for that time I got to meet 3 Patriots players. I had a 6am flight back from Chicago. I went home for a couple of hours before I had to go to MGH to restart treatment. I was exhausted. As soon as I got home I went to sleep. It was 5pm. I woke up just before 10pm with full blown flu symptoms (fever, migraine, chills, muscle aches). I took some more tylenol and went back to sleep for the night.
Tuesday 10/4 I was an idiot. There are cognitive side effects of interferon and this may be my first experience. I put my tylenol in my pocket instead of taking it on time, post infusion. I didn’t realize that I had put it in my pocket, until I got to class and had a fever, rigors, and nausea.
The rest of this last week I have been pretty nauseated and exhausted, but it’s over now!
HUUUGE thank you to my infusion nurses who took great care of me at MGH!
Oct 12th -> Maintenance therapy begins… or so we thought: I had an appointment with Riley this day and we spent the first hour discussing side effects of interferon and talking about how to give myself the subcutaneous injections. In walks Dr. Lawrence with some ground-breaking news. New results from a study showed significant improvement in long-term survival for patients on an immunotherapy drug called ipilumumab or “ipi.” He suggests we stop treating with interferon and think about starting Ipi. Ipi involves a 90 minute IV infusion once every 3 weeks for 4 doses and then once every 12 weeks for 3 years (or until unacceptable toxicity, which is quite common). It also comes with the risk of serious autoimmune side effects that would warrant long-term systemic steroid treatment (not something I have ever wanted to try). I am terrified of these risks but I know I have to do it because it’s the best chance I have right now of putting Melanie to sleep forever.
Also important to note that the week after my last week of infusions was one of the hardest I have ever experienced. 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 chemically depressed, weepy, really exhausted, unmotivated, and having a really hard time concentrating on school and getting work done. I knew that depression and exhaustion were a common side effects of interferon, but I had thought that I have such a great support system, I stay active, and haven’t struggled with depression since high school. This was a wake up call that depression is not something you can always avoid and in my case it was debilitating. I am also super lucky in that now I get to stop the interferon and hopefully this depression will go away too.
Oct 19th: Met with Dr. Lawrence and confirmed I will be starting Ipi early November (tentative Nov. 3).
Oct 31st: First round of CT scans/MRI since diagnosis! I will be getting essentially a full body (abdomen, chest, and pelvis) CT scan with IV contrast dye as well as an MRI of my brain to search for lesions or tumors on my organs. Even though my surgery confirmed that there is no clinical evidence of disease, Melanoma is such a bitch that it tends to hide or can live undetected in the body (at a microscopic cellular level), which results in a high risk for reoccurrence, often within 5 years. Since I have stage 3B, this is considered a high-risk for reoccurrence, which is why the treatments I am undergoing are called “adjuvant therapy.” The point of having the treatment is to reduce the chances of the Melanie coming back in the future and the new studies on Ipi show that the survival benefit outweighs the risk of the side effects, which can be very serious.
Results: Scans are clean!
Ipi infusion #1 – Nov. 3rd
New MGH Dermatologist, First Ipilumumab “Ipi” (Yervoy) Infusion!
Unlike interferon infusions, Ipi infusions take a lot longer. Since I only go once every 3 weeks I will have blood work at first, probably some counseling by Riley (my NP) and/or Dr. Lawrence, I’ll probably have to sign my life away on a few consent forms then I’ll go up to the infusion room. The Ipi infusion takes 90 minutes itself and is probably followed by more hydration. I’ll know more after the first infusion. Because there is such a high risk of adverse autoimmune effects I’ll have the Docs/nurses on speed dial. I will go in weekly for check-ins with Riley (my NP). Unlike interferon, where side effects occur within a few hours, it is really unpredictable for Ipi, where it can happen immediately but most likely won’t happen until 3-6 weeks later. I’ll continue to go back for infusions every 3 weeks for 3 more doses (unless toxicity). Then the maintenance phase is an infusion every 3 months for 3 years. It’s unlikely though that I will be able to have treatment that long. A majority of patients in the study didn’t even make it to 1 year. The good news is the efficacy of the drug should not be affected even if I have to stop after 3 doses.
Nov. 14th-18th: The ipi rash begins – not really much of a visual rash, but I have intense itching on my back, my legs, my neck, and shoulders. I bought a bunch on lotion and am now taking antihistamines around the clock and finally had my first full night’s sleep without waking up feeling like an itchy crazay person.
Nov. 20th-22nd: Mild fevers and flu-like symptoms ranging from 99-100.4. Easily controlled with tylenol/ibuprofen. I continue to go to class and am most affected by the symptoms at night and in the morning.
Weds Nov. 23rd -Ipi Infusion #2
I start the day feeling blah, I tell my healthcare team about the mild fevers and they order extra blood/urine cultures and analysis to try to rule out any other source of infection.
Nov. 23rd-27th: Fever week continues
My fever spiked to 102 wednesday evening, 102.5 thanksgiving evening, and 103 for the rest of the week. My neck was sore, I had crazy headaches and was hearing weird buzzing sounds. I was miserable but still had a lovely time with the Freedman Family over thanksgiving (thanks to lots of ibuprofen, towels, and blanket).
Sat Nov 26th: A trip to the MGH ER
Lege took me to the ER after contacting Dr. Lawrence about the continued high fevers. They run more tests and rule out any infectious cause for the second time. I am prescribed prednisone which I am told to start the next morning.
Nov 27th: wake up with a fever and take my first dose of prednisone. No fevers since.
Mon Nov. 28th: First meeting with my healthcare team post fever week. Lots of News.
Meet with Dr. Lawrence and Riley. Find out my liver enzymes are very elevated and we are concerned about autoimmune hepatitis. We think my thyroid is no longer functioning. We plan to schedule a liver biopsy to see how long I need to be on prednisone. I am upset about prednisone but happy my fevers are gone. Dr. Lawrence tells me we will probably discontinue Ipi infusions for good.
Thurs Dec. 1st: Meet with Riley to retest labs for liver enzymes and thyroid hormones and probably some other stuff. result: LFT’s and everything went up. Thyroid normal again!
Dec 1st: Meeting Dr. Carolan who is GI/Liver specialist for a consultation. He says continue on high dose of prednisone and we will reconsider afterbiopsy results are available and re-check LFTs.
Mon Dec 5th: LIVER BIOPSY at noon. I have to stop eating/drinking at midnight the night before so I’d recommend not coming near me with food or drink before then (I have to go to class in the AM). It went well except I was hangry and cranky all day.
Thursday Dec 8th –Liver biopsy results: Mixed results but mostly good news
My liver test function tests (LFTs) were very much improved. One of the levels was normal and the other two were slighly abnormal but much better than before. This is very good news.
The liver biopsy was mixed so rather than producing clarity as we’d all hoped, the results introduced additional uncertainty. According to Dr. Carolan, the most straight forward interpretation of the results is that the ipilimumab or one of its breakdown products was directly toxic to the liver (i.e. a drug-induced hepatotoxic reaction or a liver toxicity reaction). Alternatively and less likely, it could still be autoimmune hepatitis but we won’t know (or we may never know) until we start tapering the prednisone to see if my LFTs either rise again (indicating Autoimmune-hepatitis) or continue to fall back to normal (indicating a liver toxicity reaction – which is much more benign).
Prednisone taper: rapidly taper over 2 weeks (reducing my dose by 10mg every 3 days) so that I will potentially finish my prednisone taper on my 30th birthday (Dec. 22nd)!
Labs: blood tests twice a week (mondays and thursdays) to check my LFTs (AST, ALT, Alk Phos and bilirubin shit) to make sure they don’t go skyrocketing as we rapidly taper prednisone. If my LFTs go up then so does the prednisone dose, which could mean 6-8 weeks of prednisone and prob confirm auto-immune hepatitis.
Results: All my LFTs and blood work downtrended until it reached normal throughout my prednisone taper
Dec 12th-Jan 17th: Winter Break but mostly studying for the NCLEX
Dec. 22nd – I say goodbye to my 20’s also Lege’s band, Baeja Vu is playing a show you should all come to.
It was the best birthday ever
Dec. 23rd: Finished the Prednisone Taper & decide to discontinue Ipi infusions
Despite having 3-4 birthday bevies, my LFTs were all still in the normal range and I graduated to being finished with my prednisone taper. We also met with Riley who informed us the Dr. Lawrence had decided ethically it wouldn’t make sense to do more Ipi infusions. So I am officially done with systemic treatment until further notice. This is both exciting and terrifying.
Hanukkah/Christmas: So much fun getting to experience my first Christmas with the Freedman/Rosenblatt/Trittipo clan. I find it hilarious that 2 out of the 3 of those names are straight up traditional Jewish names.
post birthdayHolidays: NCLEX prep and studying
2017 begins here
Jan 3rd: I took the NCLEX and I had about 77-78 questions and i took my time so it took me almost 2 hours. After it was over I experienced what my good friend (who is also an NP) termed “Post-NCLEX psychosis” where you convince yourself you failed and cry for a majority of the day/don’t eat/leave the couch/refuse to watch anything that involves hospitals or nurses. I paid the $7.95 to get my results within 48 hours and I PASSED. call me Schwambomb RN, BSN
Jan 3rd-6th: fevers are back and I’m back on prednisone but just 30 mg this time. Will be on prednisone for a couple of weeks. Also experienced one episode of syncope (I passed out). LFTs were elevated. Hypophysitis ruled out.
Jan 8-14th: Lege and I go to Cuba
Jan 9th: Lege and I got engaged! See Update #18 for more details
Jan 17 – Spring Semester classes start.
Jan 18th: met with Dr. Lawrence, LFTs are normal and started tapering prednisone again.
Jan 25th: Finished 2nd Prednisone Taper
Jan 30th: Labs are normal! However, since I finished the taper, my skin has become itchy like it was when I was on Ipi. Like, it wakes me up in the middle of the night. Annoying as hell. Also started having what I call “micro-burst headaches” where I have an intense headache in a specific point in my head for 10-15 seconds and then it goes away. I have a few of these everyday now.
Friday Feb 3rd – vision issues/micro headaches:
When I got up in the morning, I noticed my vision was off and I had this weird pressure sensation behind my left eye. Then my vision in my left eye was very blurry and my color discrimination was off as well. This scared me. I went and laid in bed and the acute vision symptoms went away. However, my vision had been strange for the rest of the day. I’ve been photophobic (light sensitive) and the micro-burst headaches were worse. Part of me thinks this could be a weird migraine, and the other part of me is worried about optic neuritis or hypophisitis (terms I will explain in my next post), and possible side effects of ipi treatment. A very teeny tiny part of me knows that it’s possible it could be new tumors in my brain but I HIGHLY doubt that, and I’m not too worried.
Monday Feb 6th – almost passed out: throughout the weekend my symptoms seemed to decline (at least the visual symptoms) I am still itchy and still having the micro headaches. I forget that I even had those weird symptoms on Friday and I go to a “yoga sculpt class” monday night, which is like boot-camp meets heated power yoga. I go to these classes on a weekly basis and didn’t think twice about it. The first 15-20 mins of class go great. We start doing bicep curls and I pick up a heavier set of weight than normal. I start to get really nauseated and dizzy. i put down the weights, I feel instantly better. Like an idiot, I stay in the class and I only start to feel these symptoms when I am using weights or am stressing my body more than normal. At one point I felt the same prodrome I had before I passed out when I had the fevers. At this point I decided to stop the class, but it’s already over and we are just stretching. During and after the class I realize that something is actually wrong with me and I email my oncologist that evening.
Tuesday 2/7 AM: Dr. Lawrence responds and says:
“Elana, I am not certain what to make of this but it does raise the concern about hypophysitis. We should do a brain MRI, have you get some blood work, and move your appt up to this week”
2/7 PM: I had a Brain MRI. They are never fun.
Feb 9: Dr. Lawrence tells me based on my MRI that part of my pituitary gland is mildly enlarged/inflamed. We don’t know for sure so Dr. Lawrence has me get a bunch of bloodwork, testing pretty much all the hormones your pituitary/thyroid gland are in charge of (which is a lot). He also refers me to a neuroendocrinologist at MGH – Dr. Faje. A guy who’s one of the leading experts on things related to ipilimumab induced hypophysitis. Most of my blood work comes back within normal limits except for one hormone but it’s just a little bit elevated
Feb 11th: I have a cortisol stimulation test at MGH. I just barely “pass” this test which is looking ad adrenal insufficiency.
Feb 16th: I meet Dr. Faje, the neuroendocrinologist. He is not convinced i have hypophysitis and orders a specialized MRI that looks specifically at my pituitary gland. He theorizes its possible i have a pituitary adenoma, which is a benign tumor in my pituitary gland. alllright.
Feb 17th: I have special pituitary MRI. The nurse has trouble getting my IV in and accuses me of being an IV drug abuser. I laugh at her. She get’s it on the 4th try. I tell her with my eyes that it’s inpatient people like her that my veins are all effed up.
Feb 23rd: Dr. Faje tells me that it doesn’t look like I have hypopysitis after all and that my pituitary gland seems to be just naturally asymmetrical and matches my other previous MRI’s. So it’s at least been like this since I started having MRI’s (June). This is a relief but also frustrating in that we had to go through a lot of stress and uncertainty for 3 weeks to find out nothing was wrong. But at least nothing is wrong though. It’s difficult to explain the emotions I feel about this. I am still having the microburst headaches, but they are not debilitating. I have not had any more vision issues or fainting episodes so that’s all good.
Feb 27th – I have my 4 mo skin check and I pass it with flying colors!
March 8 – 9 month CT scan of neck, chest, abdomen, & pelvis!
March 13th-19th: Spring Break! Park City with my family and Cherry Cousins!
March 23rd: Apt with Dr. Lawrence to discuss my scans and they are CLEAR! Still no evidence of Melanie in any of my organs! He doesn’t know what to do about my headaches but again they are not debilitating so we agree that I will just monitor them and report any changes. If nothing crazy happens that I am FREE for 3 months until I get my 1 year scans and blood work! Crazy it’s almost been a year.