Tuesday, October 2, 2012

Well, Happy October

My opponent: Reed Sternberg cell indicating Hodgkin Lymphoma presence. 
It looks like owl eyes or a pig's nose - or a big asshole, depending on how you
look at it. 
October did not get off to the start that I hoped it would. It’s turning into autumn, the leaves are a golden palate and the air is getting crisper. With that, I knew would come my own change, as always happens at the crossroads a PET Scan provides, but this was not the change that I wanted.

My October started with a figurative punch in the face, and then the gut, and then a few more times in the flank. I didn't even see it coming. I had no time to put up my dukes. 

My mother and I sat in the small, harshly bright exam room awaiting the scan results that Dr. Moskowitz would bring in with her.

“So you’re feeling well?” She asked, having already debriefed with her nurse that I met with previously. “That’s great … .” she trailed off.

“I feel very well except for the anxiety I have over this scan,” I replied.

“Well, the scan doesn’t look great,” she said. I know it was difficult news for her to deliver.

No, it doesn’t look great. There are new lymph nodes lighting up in my chest and abdomen, which likely indicate new disease sites. The bone involvement in my hip, pelvic and sacral areas is much hotter than my last scan indicating increased metabolic uptake. My bone lesions are the worst, as evidenced by the higher SUVs (a measurement of the absorption of the radioactive tracer I was injected with, calling out the highly metabolically active areas). The left iliac wing had an SUV of 2.7 on my July scan and is now up to 15.5. My right sacrum went from 2.3 to 7.5, and my right femur from 7.7 to 10.7 SUV.

I don’t understand. Could it be all that dancing I did at Thea’s wedding Friday? Could that be giving a false read? I asked her how they know that this is more cancer and not just inflammation from my own body fighting the cancer itself in those areas. She said that they don’t know anything for absolute certain, but the fact that there are new areas of internal swollen lymph nodes (with SUVs up to 11.4) makes it much more likely that the disease is again on the rise and has again learned to morph around the treatment that was keeping it stable. It’s a son of a bitch.

We've taken me off the SGN-35. I did not get the treatment I was due yesterday. It is obviously no longer working. There is no plan right now, we’re grasping at straws for what to do next. Part of me just wants to sit on it and see what happens. The fact that I had an allogeneic stem cell transplant excludes me from many clinical trials of new drug agents. We’re looking at MTOR and HDAC inhibitors, though I’ve already tried many of them. We may need to revisit some of the drugs I’ve already been on in those categories, though many haven’t been approved for Hodgkin’s yet, so I’d have to be receiving them off-label and risk my health insurance not covering them. I’m slated to possibly try a very new drug with Sloan-Kettering’s Phase-I trial clinic, though it has never been studied in a Hodgkin’s patient, but does go after a protein expressed in Hodgkin’s cells and therefore has potential.

My head is spinning. I am overwhelmed, sick with worry and shock. Today has been alternating crying with clinical trial research, medical phone calls and e-mails to doctors I’ve worked with in the past and contacts I haven’t yet tapped into. I’m open to traveling anywhere I need to to find the treatment that I’m still seeking to put me in remission. My confidence is waning a bit, but I do believe that the key is still out there.

I am fortunate that I am feeling no pain at this time and that I am otherwise healthy and strong if you took the lymphoma out of the equation. That is a crazy reality to me. There has got to be something that will get this disease in check. I don’t understand why I have to be the one dealt this deck. Why do I have to have the unrelenting syncytial variant type of Hodgkin’s lymphoma? Why do I have the bone lesions, which make this disease nearly impossible to wipe out?

I have my game face on and am delving into the required research, but I’m hurting pretty badly inside. I just truly thought this drug would have given me more time. I had a good run and I wanted more.

No one can ever say that I haven’t tried. I have been treated at four institutions, two of the best cancer centers in the nation, I am seen by a hematology oncologist, a lymphoma specialist, a transplant doctor, a radiation oncologist, a naturopath physician, an oncology psychiatrist. I have shoved all of these treatments into my veins, down my throat or radiated through my body:

Chemotherapies (Nearly 30 drugs in 3.5 years):
  • Six cycles of ABVD chemotherapy (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine)
  • 3 cycles of ICE chemotherapy (Ifosfamide, Carboplatin, Etoposide) 
  • DI-CEP (Dose-Intensive Cyclophosphamide, Etoposide, Cisplatin)
  • BEAM (Carmustine, Etoposide, Cytarabine, Melphalan)
  • Three cycles of GND chemotherapy (Gemzar, Navelbine, Doxil)
  • Two cycles of Bendamustine on clinical trial
  • Four cycles of SGN-35 acquired on compassionate use basis 
  • Two cycles of Phase I/II Clinical Trial of Panobinostat (LBH589) and Everolimus (RAD001) at MD Anderson Cancer Center in Houston, Texas
  • Fludarabine and Melphalan, plus Methotrexate injections
  •  Vorinostat (SAHA) 
  • Revlimid (lenaldiomide)
  •  Five cycles of Vinblastine
  • Cyclophosphamide, Etoposide, Procarbazine oral chemotherapies
  • Post-transplant retry of SGN-35 aka Adcetris or Brentuximab Vedotin for 7 cycles
  • 10 days of highly targeted radiation to T7 and T10 vertebrae and lower sacrum
  •  Mini Autologous Stem Cell Transplant
  • Full Autologous Stem Cell Transplant
  •  Allogeneic Stem Cell Transplant 

What’s left? Anyone have any educated ideas, please feel free to send them my way. If I sound snarky and angry it’s because I am right now, and I think I deserve to be for a little while here as this new information settles into my understanding.  


  1. I am so sorry to hear that you did not get good news after the latest scan.

    I know when I drove my wife to MD Anderson earlier this year that before we left we got the ok from the doctors there that there were trials available even though my wife had things that would keep her out of a lot of trials (mainly having thyroid cancer). Even if a trial says you can't be on it because of this or that, there are always waivers if you push them enough.

    If there is anything that you think I could do from here in CA, please don't hesitate to send me an email, ok? brandon_griggs2004@yahoo.com

    You and Craig and your family will be in my thoughts and prayers.



  2. I think you are really allowed to be snarky and angry - this isn't good news, and it isn't fair. I can only offer you my sympathy, and hope other, wiser people are able to help you come up with an effective treatment plan. I am so sorry for you and your family.

  3. Karin, considering the awfulness of what you are facing, I didn't think you sound snarky at all! My heart sank as I read this post. I know I am a stranger but I have come to know and care about you and your family. It takes a great deal of courage to share as deeply as you do. And I for one am grateful. Please know my thoughts are with you. I hope you find the strength to keep your chin up as you search for your next treatment. With love, Jackie

  4. Karin, I sent you a quick note a couple of months ago--I live in Hartford, just down from HH, and my son, 5 years ago when he was 25, had HL.
    I follow your blog and am always sending you good thoughts.
    After I read your blog tonight, I stumbled upon this poem--It's by Ellen Bass. I hope it's okay if I copy it here:


    to love life, to love it even
    when you have no stomach for it
    and everything you've held dear
    crumbles like burnt paper in your hands,
    your throat filled with the silt of it.
    When grief sits with you, its tropical heat
    thickening the air, heavy as water
    more fit for gills than lungs;
    when grief weights you like your own flesh
    only more of it, an obesity of grief,
    you think, How can a body withstand this?
    Then you hold life like a face
    between your palms, a plain face
    no charming smile, no violet eyes
    and you say, yes, I will take you
    I will love you, again.

    1. I love this poem so, so much. I cried and cried reading it because it's so full of truth. Thank you for sharing it with me. It's a perfect sentiment.

  5. I'm sorry...this is one of those moments that I really wish I could come up with some inspiring words, because the ones I have just don't seem to be enough. As I stare at your list of medications, I experience a combined sense of awe, fear, and sadness. I'm in awe of your incredible strength and passion for life; I fear the unknown reality that we all live in; and I'm sad for the simple reason that this isn't fair.

    Like so many others that post here, I'm also a stranger that gotten to know you and your "survivor spirit" through this blog. I've been following you for some time now, and I hope you know what a difference you have made. I can truly say that I'm a better person, I'm more aware and present because of you. I know there is nothing any of us can say to truly make this better, but I hope you know that we're all praying and cheering you on so that you will continue holding on to the hope that things can get better.

    Have your moment, or two, or three, because you have every right to, and keep fighting...thank you for sharing so much with us.

  6. Hell, yes, you deserve to be snarky & angry. I'm snarky & angry just reading this. The thing that pisses me off the most about cancer is that even when we do everything right--the exhausting research, the wild goose chase of finding the right docs or the best facility, the never-ending consumption of toxic meds to arrest the disease--the cancer still gets the upper hand. If not in advancing the disease, it still has the upper hand in the mental anguish of scanxiety, negative body image, fear for the future...the list is long. I hate that your news wasn't good and am sending good thoughts your way.

  7. Oh Karin, your are such a fighter and I hope you keep the fight going. You are in my prayers all the time as well as on our church prayer list. I pray the doctors come up with something soon. We are so sorry you have to look again for an answer to your disease. Bless you and your family.
    Donna and Don in Torrington

  8. You deserve to feel whichever way you feel. I had high hopes..wishing you could be given many many many more years of stability, if not shrinkage. I really hope something comes up. I only know you through your words, but your words make me want you around and WELL for a very very long time.

  9. Karin,
    you have every right to be upset, angry, snarky..whatever you choose. I'm very sorry to hear of the bad news, but i know you're a strong person and you will get through it like you have in the past... Always here for you! If you ever need anything never hesitate to let me know!
    xoxo Cheri

  10. Hi Karin,

    I am so sorry to read this. I have been reading your blog for quite some time, and like others have been enamored by your spirit and fortitude.

    I'm a molecular geneticist that works in biopharma, but in mainly orphan oncology indications. I spend a lot of time reading about clinical trials, upcoming technology and agents that show promise across indications.

    I think there are a few things that you need to consider when trying to find a new treatment. Granted, I don't know much about HL, so perhaps this are just more things to discuss with your team. Targeted therapies are great, but cancer is a tricky beast, and there is never one pathway that when arrested or promoted can completely stop the proliferation of a cancer. malignant cells are astute, opportunistic and unfortunately, rather highly evolved. Once one pathway is cut off, it will find another. Especially if it has before. Chemoresistance in cancers is a huge problem. For this reason, if still looking for curative measures, I find that the combination of a targeted therapy and a broad chemo agent gives a more robust response. Cancer doesn't exist in a vacuum - and targeted agents approach it as if it does. There are environmental changes that occur in your body and around the cancer cells/tumors/etc. - a targeted therapy doesn't address this, but a chemotherapeutic agent would complement a targeted therapy.

    In addition, there are some immunotherapies that you may want to consider. Such as 2nd or 3rd generation CAR (chimeric antigen receptor) therapy, something that is pioneered at MSKCC (as well as Penn), and can be done post transplant - if I remember correctly (it's been a while since I looked at CARs and lymphoma)- it strengthens the response.. though I could be wrong.

    Lastly, quality of life must be considered. Do you want to take on a more toxic, rigorous regimen, or do you prefer the life that you are able to lead when taking only targeted therapies?

    Good luck, Karin. I wish you the best and hope that something we currently have in the lab or clinical brings you relief.


  11. I'm so sorry to read this and please don't feel like you have to apologize or explain how you feel. There is no way that I can understand what you are experiencing and there is no wrong way for you to experience it. Although I've never met you, I am heartbroken to hear about the results of this scan. I'm sending prayers, love, and virtual hugs. I pray that the next treatment is the one that will work. Sarah B.

  12. I, too, have come to know you through this incredible blog and I am so terribly sorry to hear your news. I think about you every day and I was most reluctant to open this today.....not wanting to hear anything but good news. I am praying for you and hope that someone who reads this will have a next best step for you. I would wish that the hope and strength and love of all the people you have inspired would lift you up and give you the courage to fight on.

  13. Well, dammit. I have been reading your blog since my own diagnosis (November 2011) with metastatic ovarian cancer at 36, during the birth of my daughter. In the face of a devastating diagnosis, your blog helped me to see a way to reconcile the realities of my disease with the life (and people in it) that I love so much. And, it hasn't only been your courage (though it has been that), it has also been your willingness to voice the anger and the bewilderment. I gulped down each entry like it was cool, clear water. So, thank you.

    And, even though it never makes it easier to know that others are on the road with you, know that we are here, holding you in the light--just as you have done for us.

  14. Karin, I am so sorry to hear that the scan results were so far from what you'd hoped for! There are probably no words to help you feel better. I can't even begin to imagine what you're going through and feeling right now. I'd have to say, snarky & angry is certainly justified though! But I have to also say I truly admire your spirit through all this. To keep fighting the fight, never giving up, and all the while still living life to the fullest you are able is an amazing testament to your spirit! I hope and pray you still find your miracle.

    You asked for any ideas/suggestions...Have you ever looked into Cancer Treatment Centers of America? I don't know much about them, don't know anyone who's gone, but the premise of their fight against cancer sounds impressive, with an all-encompassing multi-pronged approach.

    My prayers are with you!

  15. My thoughts are with you, Karin. This seems so unfair for anyone, but especially for someone like you. Take care of yourself but keep on fighting!