And that’s the way it is…

Reading news related to Multiple Myeloma, I happened to run across a headline declaring Celgene’s New Multiple Myeloma Drug Is Kicking Amgen’s Ass. “Wow!” I said to myself, “Pomalyst must be doing a great job bringing people into remission!” Of course I clicked over to read the article. Imagine my surprise to find out that the headline was touting overall sales; doctors were choosing Pomalyst over Kyprolis for their patients.

kyprolisReading on, it became a little more apparent why doctors worldwide were choosing Pomalyst over Kyprolis. Kyprolis is only currently available in the United States where Pomalyst is available in both the US and all of Europe. That would indeed skew the numbers. A bit more research on my part discovered that this “news” story originated as a Celgene press release. Even if you factor in the wide audience, Celgene’s drug is outselling Amgen’s by a small margin. But is this anything that Multiple Myeloma patients should care about?

Actually, no. The information is for stock market investors and speaks to stock performance, not medical efficacy. Both drugs are still somewhat experimental and cannot be used as first line treatment, they can only be used on those patients who have not responded to other treatment methodologies. Medically speaking, both show equal prowess as treatment mediums, in no way is “Pomalyst kicking Kyprolis’ ass.”  Seems there are much better places to get information about Multiple Myeloma.

This last week was the occasion of the annual ASH meetup. The American Society of Hematologists got together and droned on about all things blood related. The Myeloma Beacon was, last I heard, ferreting out the MM related information. Check in with them to see what updates they managed to glean.

pomalystOncLive offers a pretty decent update on available therapies, using terms easy to understand. It’s about the best summary I’ve read lately being short, to the point, and not full of self-congratulatory tripe. I’m never too interested in reading how great a company thinks it’s products are, and even less thrilled to hear how great an expert someone is because they summarized a press release.

I really miss the days of Edward R. Murrow and even Walter Cronkite.

 

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.

Cunsperisee

I am a disabled American Veteran who became disabled at war, fighting for my nation. It should be no surprise that, as a patriot, I tend to look at the various conspiracy theories with a somewhat jaundiced eye. But, believing in the individual rights I fought for,  I am also not the kind of person who will dismiss things out of hand, simply because they sound awfully far-fetched. Were I to do that, I would have to dismiss much of what I say myself, so I have cultivated myself as a good listener. I make it a point to stay informed, and so I watch all of the most respected and accurate news analysts through vehicles like Jon Stewart’s Daily Show and Steven Colbert’s Colbert Report.  I learn more about what’s going on by watching these two shows than I do watching CNN, Fox News, MSNBC, NWCN and the BBC. Combined. They all seem to be so preoccupied with politics that they seem to shun, eschew, and ignore  literally every other possible news story –unless it picks on a competitor or features a celebrity with a large draw.

The tidbits I glean from the two hallowed institutions of the Comedy Central point me to things to go query Google News about, which draws from many news sources as well as professional blogs. It is this way that I manage to keep up with things; I learn about what’s happening on the planet. Not only are the programs handy for information with a lot less bias than found anywhere else (1% less biased), but they have pointed out to me a lot of good books, which I immediately buy from Amazon for my Kindle. Being disabled means one has a lot of time to read.  Some of us have so much time, we write. But long story short, assuming this was a story and not a bland recitation of facts, I’ll get to the point. A great friend of mine sent me the following YouTube video that was uploaded by the Corbett Report. No, not Colbert, Corbett.  It is a succinct explanation of the events surrounding the 9/11 attacks, and couldn’t have been better worded if it was written by the dedicated journalists at America’s finest news source, The Onion.

Ferarro was concerned that only some can afford cancer treatment

This was done in 2007, when Ms. Ferarro was in remission. She expressed concern in this video about the fact that drugs that allowed her to stay alive were not available for all. This continues to be the case. Unless you have a lot of money or good insurance, you may not be able to get the treatment many of us count on to keep us among the living. In this video, she’s getting Velcade and talks about research and funding.

Visit msnbc.com for breaking news, world news, and news about the economy

Ferraro developed pneumonia

This is from the AP. Other reports mentioned only “complications,” which we now know to be pneumonia. It’s very common for myeloma patients to develop pneumonia.

Ferraro died at Massachusetts General Hospital, where she had gone Monday for a procedure to relieve back pain caused by a fracture. Such fractures are common in people with her type of blood cancer, multiple myeloma, because of the thinning of their bones, said Dr. Noopur Raje, the Mass General doctor who treated her.

Ferraro, however, developed pneumonia, which made it impossible to perform the procedure, and it soon became clear she didn’t have long to live, Raje said. Since she was too ill to return to New York, her family went to Boston.

Raje said it seemed Ferraro held out until her husband and three children arrived. They were all at her bedside when she passed, she said.

“Gerry actually waited for all of them to come, which I think was incredible,” said Raje, director of the meyloma program at the hospital’s cancer center. “They were all able to say their goodbyes to Mom.”

The World of MM

Ok, so I FINALLY figured out how to find all the e-mails I flagged on my phone, which I had meant to relay onto the blog. They’re all basically messages that I thought would be of interest and importance in the Myeloma community.


1. First off, Mike Katz, the moderator of the ACOR ListServ, messaged all the members not too long ago on the issue of myeloma stem cells. It’s a very hot and heated issue in the MM world, as there are many on both sides of the fence in this argument. Basically, what this is referring to is the debate that there exists stem cells with a myeloma blueprint, allowing it to “resurface” or relapse following a transplant or chemotherapy. The argument goes on to state that we’re basically hitting the bulls-eye on the wrong target. Yes, these drugs may be very effective against current existing myeloma cells in some people, but instead, our focus should be on developing treatments to cut off the myeloma at its root, in the stem cells, to prevent myeloma cells from ever coming back. The trick is HOW we’d be able to discriminate between normal, healthy stem cells and myeloma stem cells, and ensure that these two would be clearly and concisely separated from each other. It’s a very important issue, as stem cells are not an unlimited resource for patients. From what I have read and seen, most patients will be able to harvest enough stem-cells for about two transplants. So. When and how to utilize these stem cells is a critical matter, and literally, makes the difference between life and death. I’m all for the research. Not that I am anywhere CLOSE to being a scientist by any means, but the theory behind all this seems to make sense. It’s uncharted territory. Who knows, maybe this’ll be the holy grail of what the Myeloma community finally needs to find a cure? So, provided are two videos from the IMF (International Myeloma Foundation) on the matter.


LINK
2. A fellow ListServ member posted this a while ago (Nancy!) The National Comprehensive Cancer Network (NCCN) posted their guidelines on for patients on treatment strategies for Multiple Myeloma. From the looks of it, it looks pretty comprehensive. But, a very resourceful tool for patients to use. You can find the site HERE. NOW. With all that being said, I just want to reiterate something that I believe is very important for patients, especially new ones, to know. When you’re first diagnosed, often times the first question you’ll ask is in regards to the prognosis, how long you have to live. Well, i’m sure some have their reasons for doing so, and I respect that. But in my opinion, I think it’s a huge waste of time and energy. The thing is, with the extremely rapid pace that science is moving, any statistics on prognostics are constantly becoming outdated because of how fast research is going. So don’t listen to any of it. Nothing good comes out of it. And honestly, do you REALLY want to know? It’s a GINORMOUS ball of stress and pressure to live each and every single day out of however many years you may or may not have left to the fullest. Prognostics are bad news bears, in my opinion. 


3. I can’t offer too much advice on this matter because my Dad is the one that handles all the finances of this stuff. But you don’t have to be affected by cancer to know that financing treatment on your own, without any assistance whatsoever, is not an option. A ListServ member (Dianne!) mentioned a website that I think many will be able to utilize. Laurie Todd is a cancer survivor and has a site titled “The Insurance Warrior” that deals with a lot of insurance issues and money matters. Take a look. 


4. Lastly, it’s been reported (again, thanks Dianne!) that Bortezomib (Velcade) can cause severe irreversibe bilateral hearing loss. I haven’t had the chance to read it over just yet, but the link is HERE if you would like to check it out. 


That’s all i’ve got for now!
Hope it helps


L

Indian Spring?

Friday night I had dinner with Gracie’s humans, a lovely dinner highlighted by fresh Gulf shrimp from their recent trip. My appetite is still pretty small, but I will always make room for fresh shrimp. It is the one food I think I could eat til I burst, and showing any restraint or courtesy is a huge challenge. (I came home to find the Bims in mid par-tay, and had to park at the end of the block. Thanks, girls. Looking forward to Karma returning the favor.) Saturday night, we gathered at a cable-enhanced Hoodie house to watch the Butler Bulldogs. They had a rough first quarter. As I expected, they rallied almost as soon as I called it a night and headed home. I believe that made Consecutive Win #19!

We are having what I might call Indian Spring…some gloriously warm and sunny weather, but don’t expect it to last. I’ve tried telling my daffodils and tulips that it’s a ruse, but they insist on reaching for the sun. Molly and her friends have been enjoying much longer walks. I can hardly believe it, but Molly turned 9 years old last week.

A friend told me that her elderly mother, when asked what was new, would always answer, “Nothing, thank god!” I have a new appreciation for that reply. Other than pain, fatigue and sleeping issues, which have been with me all along, I’m still managing fairly well. I know that may change at any time, and I have a new appreciation for each day that I’m able to manage on my own.

Here’s a funny from Bro 1. It always cracks me up to imagine how our pets view us:
P.S. Still no sign of the noctural mammal.

Go See…

  • Lists, lists, lists – Time Magazine’s best and worst, top travel gadgets, top toy crazes, top Pat Robertson gaffes (how to narrow it down!), best Super Bowl moments, there’s something for everyone.
  • The surprisingly mediocre “Best of the Worst” Blog led me to these Houses of Horror, which led me to a second batch. I have to say…. I like most of them, especially the row houses! (Let me tell you: I know what makes for crappy neighbors, and the paint job isn’t even on the list.)
  • Street Installations – Mark Jenkins is no Christo, but I like art that startles and challenges.
  • When the headlines get you down, the Chicago Tribune will lift your spirits with their page of Happy News.