Sunday, October 14, 2012

Back on the Revlimid Saddle

A visit to Dr. O’Connor with Columbia/NewYork-Presbyterian in NYC confirmed my gut instinct that giving the immunomodulating drug, Revlimid (lenalidomide), another go is my best move at this time.

Revlimid is not a new drug to the market, but the concept of using it for refractory Hodgkin Lymphoma is. It has proven to work well against Multiple Myeloma and in recent years proven promising for those of us who have relapsed after an allogeneic stem cell transplant as a way to ramp up our new immune systems to better attack the cancer cells.

It is an oral drug that I take once per day. I’m starting off at 10mg to see what my body can take, with the plan to increase to 20mg daily. The drug works to wake up receptors in my body’s Natural Killer Cells (a type of white blood cell) to recognize receptors in the cancer cells, bond to them and then disintegrate those foreign Hodgkin cells. This is different than traditional chemotherapies in which it’s the drug itself that is doing the cancer killing. This type of therapy is focused on getting my own immune system to work against it.

I was on this drug for one cycle from November through December last year through Sloan-Kettering after I had disease progression following my allo transplant. Though I only had a few doses at 5mg, I experienced very severe pain in my hips and lower back – where I have the highest disease concentration. I was taken off the drug and put on traditional chemo to melt the disease.

There was some talk at the time that this reaction was instead “tumor flare” meaning that my white blood cells were all flooding to the disease site (as the Revlimid is supposed to cause them to do) and causing a huge inflammatory response in my bones. Being that there is not a lot of room for extra stuff within our bones, that caused tremendous pain. I saw Dr. O’Connor at this time for a second opinion and he absolutely thought it was a flare and that it was a good thing. Dr. Dailey also brought up the concept to me. But at the that time, there was a whole other team of doctors who thought that it was in fact disease growth and that I needed a known chemotherapy agent to melt it, so that’s what I did, making the best decision with the information that I had at the time.

Now, it’s a new time. My body is in a different place and we’re giving it another go. Not only do we hope that I will get some disease reduction and Graft vs. Lymphoma effect – which may also come with some Graft vs. Host effect – but being on this treatment will also give me a rest from traditional chemotherapy. Dr. O’Connor warns of the importance of keeping my body strong and keeping the disease from continually becoming resistant to chemotherapy agents. In his words: “We need to find something that will work for more than four minutes.” Amen.

I have made the decision to receive the drug under Dr. Owen O’Connor’s care and for now have transferred from Sloan-Kettering to Columbia/Presbyterian. This means a whole new system to understand, new doctors and nurses, new protocols, and lots of paper moving to get my records from one institution to the other. However, Dr. O’Connor is literally the scientist who invented this drug and is obviously well versed in how it works. He is treating many other patients with the drug who are in my exact situation and is well versed in how to manage its symptoms and effects and tailor it to each specific patient. I feel confident in his expertise, his reputation, and his incredible smarts as both a scientist and a clinician.

There will always be the Phase I/II clinical trials I can opt into, but we’re going to first try for a drug that already has proven anti-Hodgkin effects and one that will give me the freedom to take it at home. I will be able to get my bloodwork checked locally and as long as I escape any severe side effects, won’t have to go back to NYC for eight weeks when we’ll likely check a scan.

I met with Dr. O on Columbus Day. We watched some of the parade out of the window of his office at 5th Ave and 60th St, across the street from FAO Schwartz. Following that day, I really went into a downward spiral. It’s been five weeks since I’ve been on treatment and I’d been feeling my normal symptomatic Hodgkin’s symptoms creeping in. By Wednesday I was in full flare-up.

After three months on the Prednisone steroids I was finally at the end of my taper, dropping off completely on Wednesday after 10 days at 2.5mg, the last step down. That night I started spiking low-grade fevers in the 99-100 F range then woke up in the middle of the night so flushed with a fever of 102. I woke up a few hours later completely drenched having soaked through all my clothes and our bed sheets with a combined fever-breaking and night sweat. My days had been filled with chills, unable to regulate my body temperature. Thursday I could barely move my body it  was so enflamed, achy and fatigued.

In talking with O’Connor’s Nurse Practitioner, who I am now in constant contact with, she told me that my Sed rate, which measures inflammation in my body, was 100mm/hr. Normal range is 0-20mm/hr. Obviously, my body is in inflammatory overdrive trying to wage war in there. My fevers and malaise concerned them as well and it was decided to put me back on to 10mg of Prednisone for worry that my body was going into withdrawals, having become so dependent on the steroid to produce hormones for me and that I may be experiencing adrenal fatigue.

Fortunately, the Revlimid arrived by UPS on Thursday afternoon and I was able to take the drug that night. Between the treatment pill and the prednisone, my fevers have subsided. Despite the little steroid kick, I’m very fatigued. I have been experiencing pain in my hips and back, but nothing that hasn’t been mostly eliminated by Aleve. I’m a little woozy, a little off, a lotta achy and gassy, but so far overall okay on the medication. Funny how my standards lower. I am glad to be rid of the fevers, which were completely debilitating.

I’ll be in touch with the Columbia team on Monday and we’ll work together to keep titrating the Revlimid and the steroid for maximum effect so as to get the best reaction from my immune system, without too much pain and keep me out of pain without using too much steroid, which suppresses the immune system. It’ll be a constant balance.

In other life, my mom and sister came over for the day on Friday to be there in case I had some crazy reaction to the drug. I was pretty nervous of the pain to be honest. They cleaned the house for me, we watched a movie and they brought me girly, trashy magazines. Later that night our men joined us: Craig, my sister’s boyfriend, and my Dad for dinner, then later that night, my brother and his new wife. It was a packed house and I loved having everyone here hanging out together watching funny TV shows and catching up – Sammy spreading her dog love among everyone.

With the Uconn/School of Ed Crew
I skipped the first three hours of the tailgate, but did make it to the UConn football homecoming game, an annual tradition that I was so happy to make it to and be able to spend time with the UConn crew. I consider myself an honorary alum having spent so many weekends there while Craig I did the long-distance dating thing. This afternoon I get to see my UNH roomie, Frankie, who’s in CT for a family wedding. Very exciting!

As my immune system balances, I’m still working hard to keep my life from toppling over as well. My heartache over the loss of Steve hasn’t waned and neither has my fear for what is happening to me, but I know that time will heal and the fear will again become more manageable as I settle into this new treatment pattern and again come to terms with my ever-changing body and its needs.


  1. Hi Karin,

    Glad to hear you have a new plan for treatment and to manage the pain. You're new plan made me wonder if you've been to an acupuncturist with expertise in oncology since they focus on increasing the immune system's ability to fight disease as well as pain, fatigue management, etc. I don't know if it would be helpful, but I went to acupuncture twice a week during treatment. I can't prove it helped but I believe it did. At the very least it was relaxing and helped with my stress and anxiety, and gave me an additional way I could fight the disease. Wishing you well and pulling for you as always.


  2. I admire how well you reason your way through these difficult and often puzzling treatment decisions. I'm rooting for this to work for a lot more than four minutes.

  3. I was diagnosed in July with Hodgkins - a week after having my fourth baby. Needless to say, it's been a few months of incredible highs and lows. I recently found your blog. My husband tells me to go to stop reading everything online. But it helps and reading your posts help me sort out my own emotions. My heart aches to read about the years you have spent fighting this. Thank you though for making it a public fight. You should feel very proud that your willingness to do that is helping me and I am sure so many others.

    Being treated at MSK, had my interim scan on 10/1. I wonder if we have maybe sat in a waiting room together :)

  4. I hope you feel the INCREDIBLE team that is out there.... from everywhere suppporting you! Wishing we could all wrap our arms around you for real- but please know that we do in our hearts. You are an amazing person in so many ways- hope you know and feel that too!