Revlimid Rash Out

Baldwin Hills Scenic Overlook, Culver City

This week will be a one-blog-entry week due to a variety of reasons, not the least of which are jet lag and a raging red rash.

Steve’s memorial was beautiful, respectful, and inspiring. The positive, loving energy among the nearly 300 people that filled the LA studio where it took place was palpable. So many good people that he had attracted in his life and it’s no surprise that they were all there to pay tribute to such an incredible person that had impacted their lives as he has mine. The day was full of laughter, shared stories, touching moments and positivity among Steve’s favorite breakfast foods and drinks.

It was an honor to get to meet his family and to be able to tell them how much their son meant to me. In and of itself, it was worth the cross-country flight to be able to hug his wife, Jen, in person and to hear her speak so eloquently about the loss of her soul mate.

Sunset in Santa Monica

Though I wish he was still here, I left having learned more about his life and the way that he lived it giving me such a dose of positive inspiration and an acceptance of the natural rhythms of life and death that I needed at this time. The lessons that he taught through his witty and thoughtful ways did not die with him; they will always live on inside all of us who were fortunate enough to have had him in our lives.

California was beautiful as always. Though we were there for barely as long as the travel time took, we revisited Santa Monica Pier to watch the sun set on the beach and took in the entire city from the top of Baldwin Hills Scenic Overlook in Culver City. The walk down the deep and sprawling set of stairs left me with a ripped left calf and quad muscle after baby-stepping the whole way in flip flops, but the bird’s eye view of the Hollywood sign and downtown LA in the distance was completely worth it. It was the perfect prep to get our bearings before attending the memorial.

We got home to Connecticut late Monday night. I took a shower to shed all the travel germs after two flights. As I was soaping my back, my fingers ran over a bumpy terrain of skin. I showed my naked back to Craig and asked him if anything was there.

It feels like it looks.

“Yup. You’ve got a rash,” he said, a little worry and a little disgust mixed in his voice.

I craned my neck to catch my reflection in the mirror and saw my lower back was filled with raised red dots scattered and rashing across my body.

Oh no, I thought and went to bed frightened about what my body would look like when I awoke. I didn’t know if I picked up some communicable disease in our travels, bed bugs, or if suddenly my new immune system decided to start eating away at my skin (aka Graft vs. Host Disease). This wouldn’t necessarily be a bad thing. It was something I’d been pining for since my allo transplant failed. As every doctor has said, a little GvHD is a good thing.

As expected I awoke with more red dots. The rash had crept all down my legs, along the back of my arms and further up my back. It was hot and turned wildly itchy at the touch.

This is a good thing?

I calmly took pictures of the most concentrated areas, including my face, which had a completely different type of red patches on it making me look a bit like a burn victim. I sent them off to my nurse at Columbia and explained to her that it all exploded as soon as I got back home. In addition to the rashes, my throat was very swollen and my uvula was hanging heavy and wide back there. Same was happening down the other end of the tract – if you catch my drift. I was a hot mess.

She called me right back and said that this wasn’t something they haven’t seen before, but to hold the Revlimid and to start up a steroid dose pack on top of my regular Prednisone course immediately. And, they would want to see me in clinic the next day for examination.

Even after skipping my Revlimid dose and starting up the steroid pack on Tuesday, I awoke yesterday with more red dots now on my stomach and the tops of my feet. However, my throat opened back up, and for that I was grateful.

Sexy, spotted leg

My mom picked me up yesterday morning to accompany me to the city. Ninety minute car ride, circles around New Haven to find parking, 103-minue train ride, 15-minute cab ride and we were at Dr. O’Connor’s clinic at Madison and 5^th. 

I was uncomfortable the whole way, body hot and itchy requiring every ounce of restraint not to scratch myself silly.

Dr. O took a long, hard look at my rash appearance. He and the nurse lifted my shirt and took a little gasp, but he immediately said:

“Easy. Put your clothes on and we’ll talk.”

Turns out he was concerned that we might have induced GVHD, but after getting an in-person examination he was confident that my rash was a result of the Revlimid – something they’ve seen creep in on other patients as well when they got up to the 20mg dosage that I’d been taking for 11 days.

He thoroughly explained to my mom and me the mechanics of why this was happening and that though it’s uncomfortable, it’s a pretty darn good sign that this drug is working. I like him. He’s incredibly smart, thorough and very funny. We did a lot of ball busting among him, my mom and me and that certainly helped to lighten my fear.

Reminds me of my middle school acne days

Clinically, all of this appears to mean that the Revlimid is stimulating my immune system exactly as it’s supposed to. It can be pretty confidently assumed that if it is ramping up enough to cause a rash of this grade then it is likely also becoming active against the remaining lymphoma in my body. We can only hope.

However, I can’t keep going at this dosage, and he didn’t expect that I would be able to. He is working to tailor this treatment exactly to each patient’s tolerance to maximize the effect of the drug and minimize the side effects until we find a perfect balance.

I am to hold the Revlimid until the rash goes away completely. They predict that this will be the case by the end of the weekend. Then, I’ll go back on at 10mg. As long as all remains stable at that dose we’ll start rotating in a few days at 20mg and go from there.

Dr. O doesn’t want to check a scan until at least January to give time for this to work, not wanting to “peek” too soon. Instead, he wants me to enjoy the holidays and if I’m feeling well and doing everything I love to do in January we may even bump the scan off to February. This is a strange concept for me to handle, but I guess this is what it means to treat this disease as a chronic condition.

I’m as itchy as I am hopeful that this is a treatment that will get me to long-term remission and train my immune system to keep this cancer at bay forever.

Until this passes, I’ll have to continue to endure Craig lovingly calling me “Spot” or referring to the “brail” on my back when he slathers it in hydrocortisone for me and my mom referring to me as straight-up “Rash.” Funny, guys.

I’ve only had a few scratch session breakdowns, finding comfort squirming around on the hard, satisfying texture of our rattan dining room rug to get those hard to reach and incredibly itchy foot bottoms and toe spaces. If I can restrain from touching it, it’s not too bothersome, but once anything chafes it, all bets are off. 

Vinblastine Treatment 4

I'm feeling decent, though the Vinblastine single-agent chemotherapy that I'm on is pretty tough. The primary side effects have been fatigue, deep tissue aches, jaw pain and tightness, and neutropenia (very low white blood cell count/immunity). The drug is given through a short syringe my nurse injects into my port by push after my anti-nausea and steroid premeds are run. It’s incredible what affect such an innocent looking amount of medicine can do. I can’t let the dosage fool me; it packs a punch!

Scaling the wall 

The Vinblastine has done a number on my white blood cell count. The plan was to get weekly infusions, but my bone marrow has said otherwise. To give it some credit, I have been very heavily treated and my marrow is quite compromised. I’m proud to see that it has still been able to produce blood cells at all – for this I am grateful. I’ve never been unable to rise back to normal blood count levels with time or drug assistace.

To remain safe, my WBC count has to be at least 1,000 in order to receive treatment. It hasn't been able to stabilize quickly enough to endure the original, aggressive weekly plan, so I've been more on an biweekly treatment basis. My counts were too low to get treated last Wednesday (ANC 0.6), which is why I felt pretty good last week and this past weekend without the chemo effects. In fact, I felt good enough for a day of indoor rock climbing with Craig. It was our first time and something we both loved. I especially loved the sweet reward of getting to the top and the mental challenge it took to figure out how to get there. I had no problems beyond any normal climbing fatigue and a few battle bruises endured from banging my knees into the wall. It was an exhilarating, rewarding and gratifying experience. There will be more of these types of adventures to come for me in 2012.  

But back to treatment … . On the off-weeks, though I haven’t been getting infusions, I do receive Neupogen shots to stimulate my bone marrow and get me back into the safety zone. These are very tough on my body – something that is new since transplant. It's been explained to me that the medicine may cause more pain now because my new immune system may be more sensitive to it. The days following these shots have been utterly debilitating! The bone pain is horrendous – from the large bones of my hips and back to the smallest bones in my head and jaw. Dr. Dailey and I are going to try to avoid the shots this week, rather than giving them to try to force the possibility of another treatment next week. The hope is that my counts will recover on their own with a week off and we’ll just be satisfied with that schedule. Unless I drop below 0.5, I’ll escape the injection. Yesterday was my fourth Vinblastine infusion. One more is scheduled for two weeks from yesterday. Then we check in and see whatsa happening.  

A rash flare on my ankle/foot - GVHD?

The Graft vs Host Disease of my mouth continues, as do the steroid rinses, which keep it at bay so that it's really not bothersome, just strange and kinda gross. There has also been a new, exciting development – I've been developing rashes and welts on my skin. A rush visit to my transplant doctor last week revealed it's likely that this is a manifestation of GVHD as well. He did a skin biopsy on which I am awaiting results to find out if it is an auto-immune attack process happening. If it is, then that means it is likely my sister's immune system is also going after the lymphoma and hopefully giving me the desired Graft vs Lymphoma effect, which I went through the whole allo transplant process to achieve. 

Next big marker is a PET/CT Scan on Feb. 10. If it is looking clear then we likely will do nothing - fantastic, fantastic and hopeful news! I will come off my current chemo and we'll let my donor immune system continue to do its work. My doctors and I hope that we've been working the brakes and the gas correctly by balancing immune suppressing/lymphoma eradicating chemotherapy with increased action of my new immune system. The whole idea is to stay ahead of the lymphoma so that my new immune system has the chance to be able to catch up with and go after it.

If there is some disease reduction, but still some lymphoma present, then we may go forward with the Donor Lymphocyte Infusion of some more of my sister's cells. However, we'll have to weigh what the status of my GVHD is at that time as more of her lymphocytes might push me too far into the danger zone of severe or fatal Graft vs Host Disease manifestation.

Severe flare with welts on my hip flexor/stomach area

We are trying to avoid systematic steroid therapy and all of the side effects and long-term damage that can cause, and instead going for more targeted steroid therapy. In addition to the Dexamethasone mouth rinses, I now use a topical steroid cream for when rashes and hives enflame anywhere on my body, which has been happening about once a day now. These are totally manageable and treatable side effects, effects I am grateful to live with, especially knowing these they are likely a sign that I am moving closer to a cure.

Life outside of treatment has been pretty wonderful lately. I think that the dark cloud I was in has moved past. Cancer is really only a small piece of my life right now. I have so much more to write about and look forward to telling stories of my adventures outside of all of this – more entertaining writing to come this week! It can be difficult to rehash the realities, fears and goings on of my current therapies and cancer patient status. This is why much time has lapsed between posts lately. I often want to do anything but talk or write about what I’m going through. But, then I realize the importance of doing so in order to keep a log for myself, for those that love me and worry about me, and for all those other patients out there trying to navigate this crazy cancer world. This is bigger than myself and my own avoidance and laziness. So like it or not, I’ll keep the boring treatment update blogs coming – interspersed with some more fun and (hopefully) insightful posts as well.