Thursday, July 30, 2009

Positive comments in my discharge appointment with BB!

First, they placed the portacath on my chest near my left shoulder in surgery this morning. All I can say is....OUCH THIS HURTS!!! It reminds me of my hernia surgery. If I move my left arm more than an inch it's like a knife being twisted there. I am on Tylenol right now but may need to switch it up to something stronger. This will only last a couple of days but it is not very comfortable in the least. I really hope this was worth it. BB said at dinner last night that he would recommend it, so I guess it will be okay. Hopefully it won't interfere with my (bad) golf swing.

They removed the CVL from the right side of my chest after the procedure was done. I have to was completely painless. So those of you following the blog that have one of these in you, it is a total non-event. I have grown to not necessarily trust the clinic when they suggest that something "isn't bad at all." However in this case, they are correct. Took about twenty seconds for them to remove the two stitches and pull the thing out and I barely felt anything at all.

After I got out of surgery, we had lunch and then went back for my discharge appointment with BB.

First, turns out I'm not really getting out of here for as long as I thought. Maintenance doesn't begin right away. There is a break of 4-6 weeks, after which I return here for 2-3 days of restaging tests. ANOTHER bone marrow. And **TWO** needle aspirations of lesions. I'm not crazy about doing any of these but I want to make sure we know exactly what is going on with my disease so I will submit to them, provided I am unconscious for it which they have finally started to realize is going to be a mandatory requirement of mine that they shouldn't bother objecting to.

In many cases, bridging therapy (Thalidomide and Dex) is prescribed during this 4-6 week break. Fortunately, in my case, it was not. I really don't ever want to take Thalidomide again. I have very fortunately made it through this whole thing with virtually no neuropathy at all, which I attribute to the combination of MetaNex (the vitamin B complex), Alpha Lipoic Acid supplements, and good fortune. the cancer itself. We did not get updated M-spike data today. However I did learn that I was correct in my interpretation of those charts. The big spike on the left is Albumin. The other things on the right are the various types of protein "regions" -- alpha 1, alpha 2, etc. The last group on the right, where the evil protein spike rears its ugly pointed head, is the gamma region.

In a blog a few weeks ago, I may have noted that I have IgG Lamba, low-risk Myeloma, but that I am in a nasty subtype called "proliferation subtype" which confers a less favorable prognosis. I am also in a subtype called "hyperdiploid" which confers a more favorable prognosis. They don't quite balance out -- the proliferation subtype ain't great.

BB showed me more statistics. The five year survival rate for the proliferation subtype in low-risk disease overall is around 80%. However the five year event free survival rate for proliferation subtype in low-risk disease is 100% once CR is achieved. Once again: I MUST ACHIEVE CR. BB clarified this apparent discrepancy in his dictation, which was hilarious. It went something like this.

"While this conundrum appears difficult to reconcile to patient and wife (he winked at us at this point), it is, in fact, simple to explain. Once complete remission is achieved, the lower survival rate of the proliferation subtype is no longer a valid measure and five year event free survival is essentially 100%."

There's a lot in this sentence. First, BB is pretty damn funny. Second, though, consider again how amazing that 100% EFS statistic it. Recall that per the American Cancer Society, five year survival from diagnosis is 34%. THIRTY FOUR PERCENT. Versus ONE HUNDRED PERCENT for low-risk patients (85% of total) that can achieve complete remission (about 80% of those). BB's overall five year survival, including both low and high risk patients, is around 60%. Basically DOUBLE the overall average. And if you consider that the 34% includes those patients that were involved in BB's protocol, the non-protocol patients must be less than 30%.

I am, once again, so very glad I chose this aggressive way to treat the disease. the topic of complete remission. I appear to be getting pretty close.

My bone marrow is formally characterized as in complete remission. Hurray!

In the blood, the M-protein is still present. However, under immunofixation, while the M protein is still there, there are also "indistinct kappa bands present." At first I was scared of what this could mean, but it is actually a very positive thing. It means, evidently, that my marrow has resumed normal function. According to BB's dictation -- which I tried to record unsuccessfully due to operator error on my iPhone -- this means the following:

"While immunofixation reveals the uniclonal protein is still present and this would typically confer a very good partial response, in the setting of kappa bands this confers a more profound remission."

I am not quite in CR...but I am getting quite close.

And so, while I thought I would get out of here for three months, I find myself planning a return visit for 3-4 days sometime in September, where more painful tests will be done. In the meantime, I will do weekly blood tests and hopefully watch this M-spike vanish once and for all.

And, of course, I shall keep you all posted.