Good News is ... GOOD NEWS!

A PET/CT Scan Made Me Write Again

The greatest pleasure I can enjoy during a clinical examination comes when I get a sneak peek at my results before anyone else has officially seen them. After being a patient for over 7 years, it is no real secret to me what my numbers mean about my condition.

Last week we were looking at a super high-tech image: a misty 3D silhouette of a complete tiny little 'Me.' Everything was visible in various shades of grey in a six inch figure on a high resolution computer monitor. The system expert, Chris, gave me the full show. He rotated it, changed shading, revealed my organs, hid them again, flipped me horizontal and browsed through the slices like a library book. All the vessels, tendons nerve fibers and fluids were right there.

Nothing could hide from the combination of magnetic and radiation sensors.

What we were unable to find was any trace of myeloma. It is nowhere to be found inside me.

It is gone. 

My Cancer is Gone

If you wanted the short version       -   that was it   -
Go ahead & jump down to the Comments box now
Please ...Just One Thing

Write a Comment / Question / Complaint or Two Before You Go (- ; 

PLEASE

Backing Up Before Going Forward

Since I haven't been updating my blog for quite some time, I need to summarize a few things. How I remember my timeline goes like this: Back in August of '10, I got a new set of images that revealed five myeloma lesions. All were new. One on my left scapula/shoulder blade, one on my rib at about the height of my left elbow, one in the center of my spine on the edge of a vertebra, one in a vertebra of my neck and the other one on my right hip. I knew those places. Those were the places where I felt pain.

No News Can Be Good News Too

The Problem is a Pain in My Neck
It turns out that no answer to a question can be good news. What happened (is happening) is that a sore throat started bothering me last week Friday; the 7th of June, or so. Over the weekend it was making the entire side of my head and neck really ache. It felt pretty lousy.

Self-Medication Didn't Work
I picked up a teeny tiny bottle of ear, nose and throat liquid antbiotic drops. I was putting them into my ear every 7 or 8 hours. and it seemed to be making me feel some relief; sort of anyway. But Monday morning, it was pretty clear that the pain was not settling down. It was steady and it was starting to keep me from doing anything but lay around and think about how much my ear hurt. So I called Dr G a bit after lunch, left a voice message and she called back.

The Exam was Ultra-Thorough
Dr G wanted to see me first thing in the morning on Tuesday. I would have gone in Monday afternoon, but I managed to get a decent night's sleep. Dr S is a new resident and her interview and exam were super thorough. In fact she took a lot even more time than Dr G would have. The exam must have lasted 30 minutes. That is a lot for a sore throat, I think.

Dr G came in and checked on the highlights of the interview and did her own physical exam. By that point, I was really trying to be super clear so they would be as clear as possible about what I was feeling somewhere deep in the center of my throat. I was relaxing my neck and pushing my fingers halfway around the back of my voice box to allow them to follow my finger and identify the exact/precise location of the spot that was hurting. They seemed eager to touch it and after a bit, my throat was getting pretty darn sore. Well, that was what I was there for, right?

But What Is It?
No matter how clearly we could feel the spot and no matter that I was totally certain they had found the exact spot with their own fingers, they could not identify the tissue with enough understanding to diagnose my trouble. So I was going to get a CAT scan.

Back to Hoboken University Medical Center -- Femi's hospital! 

By a couple special requests and a few dear friends attention, I was inside the CAT Scan machine less than 3 hours later. That is the advantage of having connections! They added me on to the very tippy tip end of the Imaging Master's work day and he agreed to stay an extra 15 minutes to make sure my images would be waiting for analysis on Wednesday morning.

The Images Clearly Show... my neck
And the Radiologist read them right away. The news is that there is no news. There is nothing out of the ordinary in that area. Whatever is causing my pain is not causing my tissues to appear unusual. And there do not appear to be any unusual new objects or tissues there that are not the expected and typical ones.

So it is good news that there is nothing there.

So No News is ... a Mystery
It is just a mystery what is causing my neck to be aching like this.

Wanna Eavesdrop on Me?

Here is a note I left on a fellow myeloma patient's blog last week. So instead of just putting a link to Sean Tiernan's blog called My Life With Myeloma, here is what I wrote to him. 

Please drop by Sean's blog and wish him well if you have a moment, okay?

Overheard on My Life With Myeloma, a blog by Sean Tiernan

Hiya Sean, Mark (knotfourhigher.blogspot.com / Multiple Myeloma My Way) here. It's a big news day for me whenever you write and I've re-read your post a few times... 

Once I submitted to diagnostic testing last Fall and a clear diagnosis of relapse, I went to find a new team to handle my treatment. They advised and I accepted an aggressive treatment with Velcade (bortezomib), Revlimid (lenalidomide) and Decadron (dexamethasone) -- All in I completed 5 twenty eight day cycles. That was all I could tolerate. It was supposed to have been six to eight total, but I threw in the towel. It was just too brutal. 

Since completing the heavy therapy and a couple months rest and recuperation, I am continuing with 'maintenance' therapy. So now my treatment is 21 days of 15mg rev/lenalidomide, then 7 off. It's given me edema in my legs. That is on top of the pain/neuropathy I got from velcade/bortezomib/dex regime. The neuropathy has hold of both my feet and I feel a steady pain level of 6 or 7; day in - day out. 

So hearing from you that your myeloma is steadily active and taking the beating you are giving it and holding its own ... that gives me a whole new perspective on what I am likely to be seeing before a whole lot of time goes by.

From what you have been describing about your treatments and your lab results, you are fighting hard and keeping focused on finding a way to weaken the myeloma's attacks. That is cool. It sounds like you are giving it everything you've got and all the best of what the latest/best-est protocols seem to promise to us. If it could work for anyone, you show all the signs that you are giving everything any of us can -- you're putting your best day-to-day effort into it and keeping yourself looking forward and the way you write, you seem to expect you will be seeing many more days to come. Good On Ya Sean! Keep On Keepin' On... 

Until next time, I send you

My very best regards,
- Mark

PS - Thanks to all who have been dropping by to leave
comments for me here and on Facebook.

It really lifts me up!

Once Again; the Chemo is Working!

The results of a new PET/CT scan came back on Friday. The results are good.

A couple of the five new lytic lesions we found in September have left the stadium -- the one one left shoulder blade and the one on my third rib - right in front of my heart -- have shut down/gone away. The other three are still around. The main troublemaker at the base of my spine -- responsible for having caused serious nerve damage inside my sacrum -- has reduced in size a tiny bit and the 'heat map' reading done by the PET is now showing the tumor there is back down to the activity levels of regular body tissue.

Blood Chemistry is Good
The best news is that all of my blood chemistry shows that multiple myeloma has, pretty much, stopped. The troublesome volume of Kappa Free Light Chain antibody cells in my blood stream has settled back down into the normal range. Those come from the myeloma itself as it causes my body to mass produce those cells; and that was the primary indicator of malignant activity going into this cycle of treatment. It is a very key indicator and it is showing really good results.

On the Flip Side
There are a few things that are still problematic. A couple of my vertebrae showed up in September (T08 and T10) with those lytic lesions. Well; those have doubled in size. Both are now about an inch across. There's a new spot on my skull that wasn't noticed earlier; so that might be new. The radiologist reinforced that the new images confirm what was mentioned in the last scan -- that my sacrum is fractured along the front left side. Dr G didn't comment on that when she reviewed the notes with me. I guess I need to ask about that next week... but I guess we will not be talking about putting my behind in a sling  :- ) 

So Call  it Partial Remission
In sum; the chemo is working pretty well. I am certainly back into remission. But it doesn't seem like the 'Complete Remission' that is considered the gold standard. So we'll call it 'Partial Remission'.

What Else? Oh, my Healthcare Team...
The gang at the Cancer Institute of New Jersey still keep me for at least three hours twice a week. And it makes no difference if I am there for a single injection or a full set of four meds and a complete blood chemistry workup. The nurse assigned to tend to my appointments, drug orders, prescription processing and liaison between me and the CINJ seems overtasked and underskilled to the assignment. Maybe if she would work with the staff nurses, then she'd be able to get me the benefits of having a team effort. Well, I can hope, can't I?

What More Can We Do
Tuesday, I'll get the last injection of Velcade (bortezimib) of my fourth cycle of this VRD protocol. {VRD stands for Velcade | Revlimid | Decadron - the three main drugs I am receiving}

Dr G said on Friday that she recommends I complete the six twenty-one day cycles we originally planned. Then she wants me to  switch over to just the Revlimid with supplemental Zometa (zoledronic acid) to keep the remission rolling. That all sounds about like what I expected from the start back in December.

Next Up
Right now it looks like I am still on track to complete this entire treatment protocol before my brother Steve's birthday on the 13th of April. That is also the date of my 'Second Birthday' -- the day 6 years ago I had my Blood Stem Cell Transplant and pushed multiple myeloma into remission the first time.

What I am doing about Nutrition & What side effects I experience will be coming up in my next post. Now that I'm most of the way through four of the six cycles, I can sort of recognize the pattern of effects I have been experiencing. And I have not gone head over heels for any specific diet, but I have changed things up a little bit. I'll let you in on what that means next time. Until then...

That's all I have to say about that; for now.
- Mark

Sometimes the Cure will make you Sick

    It is one of the most common side effects according to all of the drug inserts. So many of the books and pamphlets and all of those bits of information -- they bring up nausea. It shows up everywhere.
    So why should I be so surprised that I wake up in the middle of the night with my guts gripped in cramps? And nearly every day for the past week; when I stand up or even just sit up, I get a 'shot' that makes me pause and hope it will subside; or I stagger off toward to the bathroom; bouncing off furniture and corners, down the steps; to get in there. But it's just the nausea. All smoke - No fire.
    Lots of people have told me they have had real long periods when they were getting nausea from their meds. No doubt, I knew I was fortunate before I found this new groove. Before it turns into a rut, I need to find a way of easing it back a bit - maybe even keep it from getting going if possible. So far all I can do is use the anti-nausea meds - Zofran [ondansetron] sub-lingual 4mg - when the feeling starts rising up. Oh, of course, a whole extra set of side effects come with that too: I get really drowsy and completely lose focus on anything I've been doing. It does strengthen one of my abilities to a remarkably high level of competence: I sleep for hours and hours on this stuff.
    Which of my chemo meds is causing this? It's not clear. Since the episodes come at times that are completely out-of-synch with the times I take / am given my meds. There are several new meds I never had before: Revlamid [lenalidomide] and Velcade [bortezomib] and Zovirax [acyclovir]. Decadron [dexamethasone] is not new and it comes in just twice in the 28 day cycle. That's a lot of really powerful meds, so having nausea, I guess, shouldn't be too big a surprise, huh?
    The new set of chemo did kick my gut hard right from the start. I tried Prevacid [lansoprazole], but it just didn't work. Nexium [esomeprazole magnesium] was the Dr's recommendation (and she was right from the start), and that keeps me from having horrible heartburn all of the time. Now the problem is just deeper / further down the gastrointestinal tract. The result is that it's become a real obstacle to me having much of a day.
    It's more like going from one wave of nausea into a haze of sleep, then a bit of time before the nausea rises back up again. I feel like I am always fighting back; willing myself to be awake and alert or gritting my teeth against the twisting and cramping hoping it will just subside until I give in and take the Zofran; then letting myself just stay asleep as long as it lasts since that's just about the easiest thing to do.
    And it does feel good to be without nausea and not fighting the drowsiness, ya know?

    .. that's all for now, Mark