Wednesday, May 21, 2014

Once More, Brave Friend, Into The Fray

I received the analysis and the actual images of my latest PET/CT scan. It revealed a mighty and fierce myeloma lesion in my C2 spinous process. Dr G said the risk of my neck breaking is very high. That spot is known for the infamous, "Hangman's Break" which is the place the neck breaks when the rope snaps tight causing immediate and complete paralysis. Dr G said that is why she wants me to start radiation immediately.

Her argument hit home. It must have been the vivid description. Ya think?

Tomorrow I meet a radiation therapy team at Bayonne Radiation Practice to plan a course of treatments. It took a week to get the medical records over there and then another week before I could get an appointment with the Advance Practice Intake Nurses.

I did start meds already last week. I have been getting this one ever since I was first diagnosed in 2005. It's called dexamethasone. I get forty mg/day last week for four days; same this week. This stuff turns my on switch "On." Then the motor runs about five times normal speed.

The other med I will be taking is Lenalidomide at twenty mg/day for twenty-one days; seven days off. This stuff is a special kind of poison.
I know I do not want chemo again. 
But I cannot be so selfish; my wife says
I have to fight so I can make my life longer for
her and for our children and our family.

So I will treat those words as though they have come from The Pharoah in the epic movie "The Ten Commandments," when he says "So let it be written. So let it be done!"

Sunday, April 20, 2014

Multiple Myeloma "Not Treatable with the Gerson Therapy"

Nobody Really Knew I Had This Idea

According to the Gerson Institute, there is no way to expect results from the Gerson Therapy against multiple myeloma.

They say it right here:

But I Did ...

And that's too bad, because I had been holding onto an idea that I could start - and stick with - the Gerson Therapy as an alternative to chemo / radiation / frontal lobotomy .. or whatever science, medicine and the powers that be want to recommend.

Well; that's out now .. Good thing I thought to check on that question before, you know, just jumping in with both feet. Right?

Hope you are enjoying your Passover, Easter and Spring holidays. We got together with family and friends .. at church .. it was a very good time.

  .. that's all for today,
       - mark

PS - the Gerson Therapy is still a very viable treatment for many other illnesses, even cancer. But not multiple myeloma.

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  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

Friday, February 14, 2014

Check Up .. Not Just From the Neck Up

"How long has it been since we've seen you, Mark?"

I heard that question about 6 times last week when I went back to the Cancer Institute of New Jersey (CINJ they like to say). And there was the answer right there on their own printouts -- April .. 2013.

Nearly a year.

If You Feel Fine; Why Ask?

That's not the length of time between checkups that they are used to having with their patients. Of course it is unusual for me too. Why not, though, right? If I don't have any symptoms and the last few sets of test results looked as healthy as any I have seen in the past six or seven years. I just didn't feel any motivation to go and certainly didn't have any curiosity to read test results that would be more or less the same time after time.

I have long ago lost the giddy joy I had at the beginning of all this. I can remember how I used to come into the Central Jersey Cancer clinic in New Brunswick smiling and cheerful and eager to experience each procedure and every question. It was even kind of wild and exciting when my first Advance Practice Oncology Nurse Janice came in to pull a tiny chunk of bone off my hip. The newness and adventure kind of wore off after the fourth or fifth, I guess.

The Last Straw

And the day that Dr D at Hackensack demanded that I submit to the bone biopsy as a condition of continuing in the clinical trial. Probably because I was totally unclear how another negative result would help any researcher learn anything. There had never been anything but negative results from the first biopsy or any of the other biopsies from my hip. Why do one more? The answer: To get the painful bang I needed to convince me that the clinical trial would have to go on without me. That nasty and aching biopsy was the proverbial straw.

It also gave me a new perspective on how I would weigh all the coming protocols and procedures. That's also how I ended my last / most recent series of Revlimid treatments. Once we had a clear response and my blood work results had stabilized, I got eager to wrap it up. The side effects - intense fatigue, debilitation of my digestion, my strength, my coordination and my mental capacity - were clearly tied to the dosage. When my lab results remained steady at lower and lower doses, I couldn't wait to end them completely. I had originally planned on a year to eighteen months. I ended after the eleventh month. That was March 2013.

Stay Cheerful & Expect Good Things

And I have been feeling better. Though there has been no improvement / healing of the nerves in my sacrum. The pain can be controlled by steady and consistent doses of methadone. If I could be really and truly healthy, then I could get back to work. Well, of course, I would need an employer to hire me. That's true.

Why not get a real confirmation of my remission?

Complete New Lab Tests

Last Tuesday, I went in and got that started. They took a regular quart of my bodily fluids; mostly the red colored ones. I also have a prescription for a full body PET scan. That is the one that creates an image of me with only rays of light emitted by the radioactive isotopes they inject into me. An hour later they have me lay very very still in a collector like the ones they use at the Large Hadron Collider. The image created is me; as Star Man. Light from regular organs; good. Stars and constellations in/near my skeleton: bad.

Then a 24 hour fluids collection next month goes to the lab to see if they can detect any amount of M protein. When that comes up negative, and the PET is clear, and the blood work is steady; it will mean I am solidly on track for a nice long / possibly permanent / remission.

Stay Tuned!

It would be very cool if you write a comment; anything at all .. just so I can see you read this far ;-) Questions are Very Welcome!

All my best,
   - M