Friday, January 11, 2013

Cutting Our Losses

MLN4924 chemical structure
At some point I'll write more eloquently about the adventures of the marathon day that was Wednesday, but these are the bare bones facts that I'm dealing with right now. 

My ESR is 118, indicating huge amounts of inflammation. The lymphoma in my pelvis is growing. At one time it was a couple spots on each side, now those spots have connected and filled in. This area showed up as very hot on my PET Scan Wednesday, then was confirmed further with an MRI late that evening to determine if the hot spot was showing inflammation from cell death or soft tissue growth from expanding lymphoma. Very unfortunately, it's the latter. We know for very certain.

There are no new areas of involvement and the hip/pelvic area and a precarious spot on my femur bone is all we are contending with at this point, but they are spots that can't be ignored. If the lymphoma continues to grow it will break apart my bones and then I'm in trouble and a hell of a lot of pain. I've been given restrictions: no contact sports, no skiing, no running, no kickboxing - nothing that would put me at risk of fracturing that femur or shattering my pelvis. However, I'm encouraged to start lifting light weights, continue my walking and yoga, as these pieces will be vital to keeping my muscles, bones and heart strong. I met with my naturopath today to discuss more diet and supplement answers as well. I hit the machines at the gym. 

We are cutting our losses with the Revlimid and moving on. The drug did give me three wonderful months relatively pain-free and overall "normal" feeling. For this I am grateful. My doctor and I only hoped that it would hold for much longer. But it didn't, and this is where we are. This is my post-allo world. I need to continue to swing from clinical trial to clinical trial, novel drug to new drug combination to get the most time I can out of each one. I am buying quality and quantity of life here and hoping that science keeps pace. 

Next in line is a Phase I clinical trial being hosted by Dr. O at Columbia using a drug too new for a name, but still only known by call letters: MLN4924, a novel inhibitor of Nedd8-Activating Enzyme (NAE). It works in a completely different way than anything else out there. It's a first in its class type of drug targeting a specific enzyme that may be involved with cancer growth. 

After talking thoroughly with Dr. O and his team and consulting with Dr. M at Sloan, talking it through with Craig and my mom, it seems that this is the best shot right now. What's a p in the a is that it will require me to be in New York City for an extended period of time. If space is available I'll likely be staying at the American Cancer Society's Hope Lodge again, probably for about three weeks. The subsequent cycles of the drug will require less testing and bloodwork, so hopefully I'll be able to commute back and forth for treatment though it will be every few days. 

We also have the issue of our San Francisco trip and the San Francisco Writer's Conference. I'm not sure how and if we're going to be able to make this work around the start of my treatment. I have also been cast in a local production of The Vagina Monologues which starts up rehearsals next week with a performance the first week in February. Not sure if I'll be able to take part in that any longer either. There are lots of questions and logistics management that remain. Frustrating and saddening. It sucks. 

Timing is everything in these cases and rules on clinical trials can be strict. It's also unsafe to wait too long to get onto this treatment. Right now I'm dangling here on no treatment with known cancer on the move - not a comfortable place to be. 

Sure, I'm a little angry; I'm very disappointed; and I'm just thoroughly exhausted with the prospect of so quickly having to pick myself back up yet again and gear up for another new treatment and all that that will bring. But I don't have time to delve too much into these feelings as I'm in action and complementary health mode. So much to figure out. 


  1. C'mon MLN4924!!!!!
    I think about you often and I sincerely admire you.

  2. MLN = Mighty, Loving & New...many thoughts with you & your family...let the love flow...Much Love - Karen Jacobs

  3. I dedicate this moment to sending you incredible amounts of hope and love. Stay steadfast, Captain. XO - Katherine

  4. Sending love and lots of positive energy from Ireland Karin. Yes, you have a new plan of action and you are going to find that incredible strength you have inside of you again. You are stronger than this and I feel very hopefully hearing you talk about this new trial and how it is different from anything you have gone through before. Karin Diamond - you are a tower of strength, a diamond in the sky. You have the incredible Dr. O'Connor on your side, you will get through this next difficult period and as always have words of wisdom when you come out the other side. Jayne

  5. Love and light from another survivingor.

  6. I'm sorry that Revlimid is no longer your ally but I'm grateful to hear that there is a new approach and that you are going to have access to it. I hope that this new drug is everything we all hope it is! - Sarah B.

  7. As always... you amaze us all! You are a beacon of strength,and light and hope. Stay the course, and good things will happen. Hopefully you will find inspiring new adventures in the Big Apple. Like the old Muppetts movie... but this time it will be "Karin Takes Manhatan"!!!! Rock on sweetie!

  8. "Strength does not come from physical capacity. It comes from indomitable will." Mohanddas Karamchand Gandhi
    You have demonstrated to everyone that you have a pretty powerful will. Give yourself time to greave the recent results. No one can be on top of the world when it feels like it is crashing down. Breath, once again go inside to your core, breath more, feel the life go in and go out, feel your heart beat and the blood flow, your very essence is gaining momentum to go the next step. You will take the next step because you have the will to continue. Take one step at a time. I can't imagine what you go through. It is easier for me to find quotes and remind you to breath and such because I sit in a different seat and a different row. I do not know if I would be so gracious, have the will or the courage to deal with what you have dealt with. Not sure I would not be bitter or better yet contain my bitterness and anger. I do admire you ability, desire and determination in this fight. You may think anyone would do what you are doing but the truth is many do not have the courage . You have show all of us what real courage is and what it really means to have a WILL to live. Your husband, Sammy dog, mom, dad and sister are blessed by you and vise versa. The strength and support of a family is everything.
    "You have power over your mind - not outside events. Realize this, and you will find strength." Marcus Aurelius
    It really stinks that Revlimid is not working as it was. What is hopeful is there is another trial drug available. This one may be better then the others.
    Think of you daily, send healing light and prayers to you and your family.
    Keep warm, rest and keep up the weights!!
    My Warmest regards,
    MaryEllen Christina
    Six Paca Farm.

  9. I went to high school with Craig- a total sweetheart.

    Kick some major ass Karin!!!

  10. Let me know if you'd like a visitor (if it is allowed) during your stay in NYC.

    The other Karin Diamond

  11. Mighty woman -- you go girl. I think of you throughout my day. You have inspired me and changed more lives than you'll ever know.