Sunday, November 20, 2011

Biopsy #4 and Revlimid Start

It's been a while and much has happened. I had the biopsy procedure of my right sacrum performed at Sloan-Kettering. The pathologists have read the sample and confirmed that yes, there are the telltale Hodgkin Lymphoma Reed Sternberg cells present. It's the same disease trying to flare again, now most certainly in my bones. This wasn't a surprise to anyone, but it does help the situation to know we have some hard pathology evidence of the disease we're trying to go after. 

The biopsy procedure was not fun, this is certain, but it’s over, and I was fine after just a couple of days of swelling and soreness in the area. There were many hours – way too many hours – spent waiting and fasting before the procedure. I had to fast from midnight the night before until after 4 p.m. when I came to from the twilight sedation. It was a long day in the city. The surgeon went in with a needle and bone hammer and extracted a piece of the bone and marrow where disease looked to be involved, pinpointing the area with live CT Scan technology. The surgical team gave me medication to relax me, but I was by no means asleep. I played Bob Marley through my headphones and welcomed the anesthesia nurse’s hand that rubbed my arm throughout the most painful moments.

Then came more days of waiting: for results and a plan. Then came more traveling to NYC to solidify that plan, including a solo trip by car and train – liberating! I’ve done an incredible amount of thinking and contemplating and talking out options with my family and medical team, but mostly with myself. I had to ask the really difficult questions to my doctors to be able to get things into perspective here. They’ve been realistic and gracious and I could not be more appreciative to have the individuals that I have in my corner.

It took me a few weeks to get to this point, but right now, that CT Lottery tagline: “You can’t win if you don’t play” keeps coming to mind. So does the Wayne Gretzky quote: “You miss 100% of the shots you don’t take.” There are still shots for me to take and I can still win, but I have to play in order to do so. Playing will not be easy and the idea of more treatment is deflating, but it beats the alternative. To be very blunt, if I don’t play, I will die. This lymphoma will begin to become very painful and it will kill me.

In black and white, the risky treatment might kill me; the cancer will kill me. I’ve decided to hedge my bets. Because there are areas of cancer on my vertebrate, it eliminates my hope to be able to ride this out for a while longer, to “wait and see”. If I want to maximize the effectiveness of my current options, I need to act now. There is still hope for this donor transplant process to work – we just have to poke it a little bit. 

I am reluctant to have more toxic, traditional chemotherapy and have exhausted most of those options anyway having been so heavily treated. I do not want to send my body into tremendous trauma again, and because of constant scientific developments I hopefully will not have to.

Gratefully, there is a promising option and I have decided to embrace it. I’ve started a targeted therapy drug, Revlimid (also known as Lenalidomide). It is an FDA approved drug used primarily against Multiple Myeloma. However, there have been recent and ongoing studies of its efficacy against refractory Hodgkin Lymphoma – even after donor transplant. It has shown some promise in these studies, and I’ve connected with a couple of other refractory HD patients who have had great disease reduction results with it. The best part is that because it is a targeted therapy, the side effects are said to be minimal. So far, this has been true. I’m a little more tired and more easily winded, but that seems to be all.

The drugs were delivered via FedEx to my door. It is an oral pill that I have been taking once a day and will continue to for the 21 day cycle, one week off, then a second cycle. After two cycles we will check a PET Scan to see the progress that the therapy is making against the disease. Because this pill is such a "light," targeted treatment I can be on it for a very long time if needed. It's not like toxic chemo that a body can't handle for prolonged periods.  

In some post-allogeneic transplant patients, Revlimid has actually pushed them into some mild Graft vs. Host Disease proving that the drug may actually have a stimulating affect on the immune system/donor lymphocytes. This possibility makes the therapy even more ideal because not only will it be going after the small amount of lymphoma I currently have, but it may also ramp up my newly donated disease fighting cells: a win-win.

The hope is that the Revlimid will reduce the disease tremendously and will allow me to go forward with the Donor Lymphocyte Infusion with a super blast of my sister’s disease fighting cells. That procedure of course comes with the risk of mild to severe Graft vs. Host Disease, but also the only promise for long-term remission. I’ll revisit that decision when we get to that point. Right now, we’re working on getting the lymphoma under control while keeping my quality of life as high as possible.

Life has been very emotional in many respects – tough moments but also beautiful moments. I am feeling mostly well and I can do most everything again. I’ve had nearly five months without chemotherapy treatment and much healing has happened during that time. The freedom and confidence that allowed has done wonders for my spirit. My limitations will increase some again once this new drug begins to affect my blood counts, but it shouldn’t be anything extreme. I’ll continue to see my lymphoma doctor at Sloan-Kettering once every other week and will have blood work drawn locally at Hartford Hospital’s nearby cancer center every week.

Yes, treatment continues, but my life does too. Living is my focus now more than ever. No more being a full-time, incapacitated patient. I am taking full advantage of my renewed strength and mental capacity. I am still going back to work full-time from home as planned. I start tomorrow and I can’t wait to delve into the projects at hand. I'm working out with the LIVESTRONG at the YMCA program. I am also flying to visit my sister in Las Vegas for a few days and very much look forward to seeing the desert and mountain landscape out there: one night we’ll be camping in the Valley of Fire, another we’ll be taking in the Vegas strip. Maybe I’ll just put it all on red? 


  1. So good to hear from you, I check obsessively every day, sometimes more than once and have gotten my fiancee hooked as well. We talk about Karin like you're an old friend - 'Did you see what Karin posted today?' and 'Didn't that one part make you laugh?'...our thoughts are with you often.

  2. For what it's worth, I think you're making the right decision to take the shot you've got. It's ridiculously unfair that you have to endure more after all you've been through (and the mere mention of the bone hammer gave me the heebie-jeebies), but as we well know, nothing's fair about cancer. You're a rock star, you inspire me, and I'll be sending lots of good thoughts from Texas.

  3. Fight the good fight! You are an inspiration. I've been following your blog since I found it during my ABVD treatment from March through July this year. I have been one of the lucky ones thus far but I know it can change at any time.

    Your strength and courage and will to live are a beautiful thing. You WILL be OK. I have faith in that...

    Thank you for all you've taught me and please know that you are in my prayers.

    Nina Ledkovsky, New York

  4. Karin, I wish you all the best in your fight. I truly believe you will overcome this dreadful, awful disease. I am sorry your fight has been so tough and continues to be a rollercoaster. For sure, nothing is "fair" about cancer. Wishing you good health.

  5. Thank you for what you have taught all of us! From another obsessed with your blog and your journey- you are the best.. praying for all good things to come. And yes... RED will be perfect on the strip! You girls do it up and have some fun!!!!

  6. Karin, Thank you for your openness along this journey that has been more than anyone should bear. We've never met, but I feel I know you intimately. Craig is my youngest daughter's teacher. He also had my middle daughter in his class the year you began your battle with this terrible disease. For so long, I've just wanted to reach out and hug you, never ever having met you. I guess this lame comment is my way of hugging you. Through this blog and through Craig's beautiful love for you, my family has learned so much about courage, love, dedication and the horrific toll that cancer takes on people. I admire you so much. Stay strong! Enjoy LV and your sister. And, yes, put it all on red!!! Sally

  7. Karin- i helped take care of your mother in law for the past 4-5 years on and off as a HHA- my mom is her nurse at the VNA. I am now a nurse. I recently just took care of someone that was started on Revlimid. However he was much older than you- the drug has MANY adverse reactions im sure you know. I wish you the best taking the new drug and hope it does wonders for you!