Bits and thoughts

Kyprolis. Sounds like Superman’s home planet, but it’s the marketplace name for carfilzomib, the latest drug to hit the FDA approval mark. Multiple Myeloma has a new tool for its arsenal –at least for patients who have had a failure with two previous therapy attempts. For instance, someone who took Velcade and then Revlimid and suffer refractory and progressing cancer. The disease must have shown progression in the previous two months. Many people qualify for this, and over time I would suspect the drug to get approval as a first line anti-Multiple Myeloma agent. But for now, the eligible number of patients is large and the new approval of Kyprolis is appreciated. What isn’t appreciated is the price. At $10 thousand per 28 day dose, no other treatment is as costly. However, the MMRC and Onyx, the developers, have explained the high development costs and accellerated costs of accellerated approval. The MMRC hand rolled the applications through the process of FDA approval, keeping a pace that was additionally costly. Kyprolis is a proteasome inhibitor.

All of this is reminiscent of when Velcade was approved. I had just been diagnosed when Velcade was approved as a first-line agent. Prior to that, it was, like Carfilzomib, for refractory and relapsed patients that had undergone two separate therapy attempts already. So about the time that we were choosing a replacement for Doxorubicin, which was nearly fatal to me, Velcade presented itself as a candidate. Now Velcade is one of the first tools reached for by oncologists and hematoligists.. Assuming that Kyprolis sails along with some successes, it should reach the point of being a staple of chemotherapy. The compound is related to Velcade as an analog, it has greater efficacy over the spectrum with reduced side effects. What that actually translates into is a mild bump in responses to therapy and a small dent in mortality figures. The great news is that side effects are reduced as much as 20% and perhaps more, and that’s great stuff.

While Velcade nor Revlimid had any effect whatsoever on my cancer, they demonstrated me as high risk for side effects. My peripheral Neuropathy was reported to be as severe as it gets, plus that, chemo generally made me so sickly that I dropped from 165 pounds down to 117 in four weeks. My lowest weight was 94. No appetite, slept all the time (exhausted and fatigued). I had so much nausea and diarrhea that I had to take electrolytes and fluids every couple of hours, through day and night. Three quarters through the full regimen, my oncologist said that the chemo was not slowing the cancer, and, was apparently making it more active. He said that he believed that the suffering of side effects were much too severe to warrant continuing. I would simply continue to damage myself and suffer neuropathy which speeding the spread of the myeloma. So that brought a halt to Velcade. After a break, we tried Revlimid. I actually tolerated Revlimid better than infused Velcade, I suffered no nausea and even had a bit of energy. The problem was that the neuropathy came back very quickly when I resumed treatment. In three weeks it was as uncomfortable and painful as ever, and by the time the 60 day mark went by we had to abort because of the level of excruciating pain I was in from neuropathy.

But it should be kept in mind that this is an analog, a new generation of an earlier base. It builds upon the lessons of bortezomib and so we don’t really have a new drug, per se. It’s a similar relationship like thalidomide to lenalidomide. What we have is a better tool, and so we’re looking at something akin to the new and improved version of laundry detergent. As such, we shouldn’t think that this brings us closer to a cure. But that is, at least for now, is its only fault. Any improvement in the tools to fight Multiple Myeloma is a Good Thing.

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The new Book of Benefits. The VA now has a program where it is sending out benefit books to veterans. Each of these books is custom printed specifically for individual vets, so the VA is offering a manual of what benefits and how to get them that you, in particular, are eligible for. Instead of reading some vague description of benefits that a vet might be eligible for, and leaving it to the veteran to figure out where to go, who to talk to, what forms to submit and where to submit them, each of these manuals is a step by step personal instruction manual. This is a huge step forward for getting veterans connected to their benefits. The VA is long considered a monolith, a giant and unapproachable, very complext entity. The new book softens this vision considerably. One of the greatest criticisms of the VA has been the rabbit warren of regulation and procedure filled mazes. So, even though the VA glossed warmly over the benefits a vet might be in line for, actually getting the benefits could not be so glibly spoken about. This whole custom manual idea is a positive and welcome step towards aligning veterans with the benefits they earned.

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After finally closing on my home purchase, I have come to the conclusion that the mortgage process has become entirely Darwinian. Only the strong can survive the experience of getting a mortgage, even if it’s an issueless endeavor. I suspect that even the likes of Warren Buffet or Bill Gates might feel trepidation about buying a house with a mortgage. I think I signed or initialed a total of more than 200 times. I signed some documents that, I swear to God, simply said that I had signed another. I have never in my life more wanted a rubber stamp of my signature. By the time it was all over though, my signature didn’t look like it had when I started. But it reminded me of watching the birth of my first child. I mean, the experience of closing. I remember how amazing it was to see my wife’s pregnant belly deflate so suddenly as my son was born. The very same thing happened to my savings account. What looked like a comfortable pad against unforseen circumstances was yanked away by costs and down payment. Zoot! Suddenly I am back to living without a net. But now the money I put into where I live benefits me, not a landlord. If I want a pet, I don’t need permission. All choices are mine, and I like that.