Tuesday, March 25, 2014

New PET/CT Scan & New Research on Road to Cure

Is good news like dessert?

Good News or Bad News: Which do you ask to hear first when someone tells you that they have both to tell you?

I usually prefer the good news first. But I also often tell people that, "Life is uncertain; Eat dessert first!" That keeps me on an even keel. I mean, having an expression like that and then relating it to the question of which news I choose to hear first .. so here is the "Good News"

Cancer Researchers Discover the Root Cause of Relapse in Multiple Myeloma Patients

http://www.mayo.edu/research/forefront/research-team-uncovers-root-cause-multiple-myeloma-relapse  It is a well written press release and it has been copy/pasted in many many websites around the internet. I am sharing the Mayo Clinic link since it is so often thought of as a thought leader. The actual research was published in Cancer Cell, a peer reviewed journal, much more prestigous by less pretty to view in a browser window..

It is good news and ought to help shape the direction of a great deal of new research into therapies that will hopefully get into the clinical trial pipeline sometime in the next seven or eight years; if all goes well.  That would be good for me if I can hold out that long; which leads us to ..

The "Bad News"

I did get my lab results from the visit I made to see Dr G at the newly re-named, Rutgers Cancer Institute of New Jersey. I read them and kept my reactions to myself. Dr G read them too. But she didn't want to wait until I go see her in May. She called me a week or so ago and asked me to make sure she got the results of the PET/CT scan as soon as practical. I had not yet scheduled the scan, since I already had the labs showing me that my kappa light-chain values were way too high. But since she felt she had to call; I scheduled it and went.

A PET/CT is where they inject a sugary radioactive isotope into me after I haven't had any food for eight hours or so, then wait an hour and scan to see where my body has pulled the sugar the fastest. See; fast growing cells like sugar. They will pull it out of the blood the fastest. The radio-isotope molecules are decaying pretty fast and when they make an image with the scan, they do it really slowly and so the shooting particles look like stars in the sky. The first PET scan I ever saw make me look like Starman (a movie from the 80's). Anyway...

So in a regular scan, there are naturally clusters of light in my digestive tract, my kidneys and my bladder. The isotope bits are moving too fast to show up in my circulatory system very much. Any of the organs might collect a good measure of them too and that would be fine as long as they don't gang up around any lumps. And they didn't. But there are not supposed to be any glowing areas in the skeleton, since it isn't a quickly growing area. Only myeloma lesions - in my case - would to that.

Heard of a Pain in the Neck?

And there are clear signals coming from wrong places. Not in my left shoulder blade anymore. And the main tumor I have been dealing with in my sacrum is only very mildly active. But there is a bright and glowing gang hanging out on my C2 vertebra. That's the second one below my head. And that is a crummy place to be having quickly growing cells. These take the place of normal bone cells and cause the bones to fail in their normal regenerative process. They often leave 'cookie cutter' shaped gaps. Sounds kind of cute. Too cutesy, for me!

Yeah. Well; I didn't know before we got the radiologist's reading where the problem was. Now we do. A key benefit of going to the same clinic as earlier is that they have my earlier scan to compare side-by-side. Th reading was crystal clear to read. And now the problem will become more clear. The bad news has a consequence.

"Go On! Hit 'Im! Give 'Im A Sock in the Kisser, Man!"

My team want me to get started on another go around with the chemo or the radiation.

But, you know, it's not them who have to step up and get into the ring and take the blows and look the beast in the eye. I would have to be the one to fight the fight and take the beating; trying to give more than I was getting. It doesn't work that way though. There is no 'thrust and parry' or 'offense and defense' in this situation. Once they set a course of treatment, they just pile on the poison; Spray out the killing rays; Listen oh so politely and encourage to 'make the best of it' {as my buddy Garrison Keillor puts it in his show, The Prairie Home Companion}. They only slow down when I tell them that I really cannot bear the side effects, or they get labs that reveal I am being killed by the treatment. And I have been reading the clinical results. You ought to know that the "Best" results are a sixty percent chance that we can get me back into remission that will last as long as another year. Well, the next crummiest thing about it is that it takes close to a year to just Go Through the Treatment!

I Didn't Want To Do It Last Time

It was a fearful step for me to begin the treatment I completed just one year ago.. My original diagnosis was in September of 2005. My first remission lasted a solid four and a half years. Then we had to fight a really tough round when the myeloma was hiding and my labs barely revealed anything, so we dug out half of one of my lumbar vertebra because we couldn't figure out what else to do. Then I still had to trek to radiation treatment for six weeks - hiring a driver since I really couldn't manage it alone. Over time, I got active enough to live regularly again. I finally got a pain med treatment that wasn't like riding a roller coaster. I started to settle into a numbness. Life goes by.

But my life really started to feel like I was really just passing time. Then in late spring of 2011. intense bone pain started coming from new places. It went by without my MD noticing anything at all. I had to take my investigation into my own hands / switch teams and found five new lesions. It helped to take that responsibility. Since I was requesting the testing and scans I needed for information, it make me more focused on driving toward a treatment for what I found. But once I heard what the treatment would be; it drained the eagerness right out of me.

Bortezimib (Velcade) is a rough nasty drug. We injected in subcutaneously so that it would enter my system more slowly and prolong the length of time it would be at highest effect. It really hit hard and knocked me back every time. The Lenalidomide (Revlimid) I got with it was just as agressive too; though less than it's predecessor, Thalidomide, that I had back in 2005. Together those two drugs banged me down until there wasn't much left of me. There was also Dexamethasone too. I had become quite familiar with that rocket fuel several times already. Somewhere there are probably addicts who use that stuff as their drug of choice. I would rather avoid the maniac house of mirrors that stuff takes me through.

Not The Same Old Me

I was busted down, sick and weak, grumpy and pretty darn unpleasant besides sleeping just about 22 hours of the day.. Yuck. so darn horrible. And I never really got well again. Oh people would see me and say, "You look so much better. Yeah! You look really good now." But I never really was. I could do things for a few hours at a time, but I don't have any real follow-through anymore.

Nothing I put my hand to gets very far. I used to be able to take on things and make things happen and not just talk a good talk; not too much anymore. On the outside I do look all put together; on most days, I think. But inside I am just passing time waiting for ... I don't' know what. But it sure isn't another round of chemo - radiation - therapy - beat-down-the-disease-so-you-can-get-back-to-doing-what-you-do-when-you're-not-fighting-cancer life.

There has to be something more, but I don't know what it is supposed to be and even though I could likely tell a good story about a couple dozen things that would be quite reasonable-sounding. I really do not believe I have what it takes to make stuff click anymore.

The Weather Was Just Starting to Warm Up

So I really do not see why it is a good idea to go into a fight just because I can. There ought to be a reason to do it and something worth the cost and the suffering has to come from it. And I don't really see why I have to do this just because it's what people do: Fight for your life until it's dragged out of your hands because you really have tried with every last bit of your strength to hold on. Why? Don't you know that the poison and the treatments kill too. They take life away that I can live until I no longer live. Why take a course of ruinous misery if that road doesn't lead to a destination I want to reach?

So I am in a quandry. It's no fun and the weatherman says it's going to snow again tonight.

 well, that's all I have to say about that right now ..

 - mark


  1. As I look at the keyboard, I see the age spots that have developed on my hands that were not there when I was younger, for sure. I am older now than before, I forget sometimes before I forgive, I have left the keys in the ignition so I don't have to remember where I put them, then when the thing was stolen, I changed doing that. You are older now and always will be to me. I know how I feel will change and what I know will not. I look up to you. I am searching my spirit to share with you that you are not alone.

    1. Thank you for your love and compassion. Beautiful words come so gracefully from your mind. I feel comforted.

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  3. Thanks for sharing this. I was diagnosed with bladder cancer 4 years ago and have been given the all clear a few months back. After ready you post I realized that I had spent a considerable amount of time just waiting for the hammer to fall. Well not any more. We touch people in many ways not fully understanding the effect we have until it is often too late. Mark, your story has touch mine and the effect will be everlasting. My prayers are with you. Joel

  4. Thanks Joel - it is one of the toughest burdens & a grinding pet peev of so many other patients I meet in waiting rooms and sitting in treatment armchairs: Nobody lets us off the hook. We get to say "remission" but not "cured," right?
    Good to hear you've got your treatment behind you.
    Stop by again sometime, or subscribe & get a note next time I post :-)

  5. Mark - where to begin?!? I remember the first day I met you...MU...Introduction to Small Group with Corrine (teacher...blanking on her last name)...you and I were "paired" up. We had a minute to learn as much about each other as we could, and then had to share it with the class...remember?!? Well, I don't remember much, but I do remember sharing with the class that you were a Moron -- and you said: how do you know that? I never told you that!"

    And so our friendship started! Though we haven't been in "constant" touch -- we have somehow found each other off-and-on through time. You are my friend..you have always been, my friend.

    I love facebook - in that it has allowed me to keep in touch with you, see your life through your pictures...its ups and downs...God, how I hate the downs...Yet, you have always remained optimistic and upbeat about life. Every down turn created a new adventure - and you welcomed it! I was so envious of your ability to bounce back...still am.

    Yet, I read your message...and it hurt...I hurt for you...for your wife and Oscar. Mark you have endured so much, and so much more than you should ever have to. You fought because of your love of life, family, son and self. If ever anyone deserved to "win" -- it is you!

    And, in a selfish way, I want you to continue the fight...yet I know that if I was where you are, I'd have to save...enough!!! You, yes you! Are entitled to live out your life without undue pain and suffering - and I mean through chemo/radiation and drugs. Undoubtedly, you will have to endure some suffering...and I am so very, very sorry that you will. I hope you have the means to some good drugs to help you through this, and if not, call me! I will gladly get it to you!!!

    You, are not a quitter. Choosing to not endure chemical poisoning -- does NOT make you a quitter! It makes, and means, that you are a human being -- with feelings! You want to feel, to be a part of life -- and be able to experience it, in its fullest, to the end! I want that for you!

    You have made a mark, Mark :) on many people -- of that -- I have no doubt. We will all respect you, your decision.

    I regret that I haven't been a better friend and been in contact, more. If you were my neighbor, I would be there for you and Femi and Oscar. You are my FRIEND, I LOVE you and am here for you.
    Please, rest easy and know that you are loved.

    Pam (Hornick)Evans

  6. Hi Mark, I was diagnosed with myeloma in August, 2011. I am a regular guy like you with a wife and two boys in grade school...you know the drill. I live in Haddonfield, NJ. I completed a carfilzomib trial at the NIH in Bethesda, MD for newly diagnosed and had a good response. My light chains have recently skyrocketed and I am relapsing. My NIH doctor is leaving the NIH to go to Sloan. I may follow him there but was impressed by your description of Dr. Gharibo and she sounds great. I also and monitored at UPenn but always feel a bit like a number there. You get fifteen minutes and good luck asking questions. I was wondering if you could share more about the CINJ with me. It is in network for my health plan. My email is: jardinero10@yahoo.com. All the best. Terry lytle