Multiple Myeloma and Me
Posted by thedarwinexception on December 22, 2007
Since a bunch of you have written to me and asked about my disease and Multiple Myeloma in general and my feeding tube and all that crap, I thought I would fill you in a little more about the disease in general and how I live with it and how it affects me on a day to day basis.
So MM is a blood cancer. It suppresses the immune system and is always fatal. It’s a terminal cancer that has treatments for some of the symptoms but no known cure. The “multiple” in MM is because it affects multiple systems in the body and has impacts on different organs, functions and areas.
Besides being a blood cancer, it also affects bones. It likes to eat bones. From the inside out, since it attacks the marrow. This disintegrates the surrounding bone and leaves gaps and holes so that x-rays of affected areas makes your skeleton look like Swiss cheese. That’s the way my skull looks, since that was the first place my disease “settled” – in my skull. I was only diagnosed after going to the doctor with what I was absolutely sure was an ear infection. My ear ached so bad I couldn’t even open my mouth. After a bunch of tests and an extremely high SED rate (which measures the amount of bone and debris in the blood), I was finally diagnosed with MM. And I didn’t have an ear infection.
The pain is introduced because after eating at the joints and the high density bones, the nerves that connect the bone and surround the joints are left exposed. And if you’ve ever had a broken or decayed tooth that had an exposed nerve, you can understand how painful this can be. That’s how it feels all over my body, especially in areas where the disease has “settled”. I can usually tell where the disease is at, because that’s the place that hurts the most. Mostly in my hips and my skull.
My eyesight has suffered a lot because my eye sockets have been compromised and my eyes have “tilted”, resulting in my vision being affected. And my once halfway decent teeth have been prone to decay and falling out because my jaw is almost non existent at this point. But I can’t do a whole lot about either of those things, because prescriptions for glasses would be subject to change on a weekly basis and dentures would never fit from month to month.
My digestive system has been affected, so now I can only eat a limited diet. Most of the time whatever I do eat doesn’t get absorbed because the lining of my stomach has been eroded and the cilia that normally “grabs” the nutrients has been eaten away. So whenever I eat, it tends to “go right through me”. And I get no nutritional value from food. This has resulted in a enormous weight loss, and a feeding tube being attached so that I can “eat” and get some nutrition from a controlled liquid diet. I can still eat any food that won’t make me absolutely sick, and I can still eat “normally” anything I’d like, it just results in having to get to a bathroom right quick afterward. Which limits the amount of restaurants we can go to.
But, at this point, I am used tot he pain, I am used to all the medicines, I am used to the limited diet, I am used to the fact that clothes don’t fight right and that if I want a pair of pants I have to stick with sweats or something out of the “pre teen boy” section. And the clothes fit in rather nicely, anyway, with the fact that my feet are so small all my sneakers have “The Little Mermaid” or some Disney princess on the side. The only real complaint I have has to do with the pharmaceutical companies and the FDA, actually, not the disease itself or the doctors.
I was involved in a drug trial when I was in Florida. This was a trial for the drug Thalidomide – the same drug from the 50’s that caused all those “flipper kids”. It was banned fro use as a drug in the United States, until the 80’s and 90’s when it was found useful for AIDS patients as a treatment for the “wasting” they were suffering from AIDS.
Celgene bought the drug, which was now not subject to patent legislation, and started testing the drug as a treatment for some cancers under the same theory and usage it had been given to AIDS patients for – non wasting. It was found to be effective in MM patients, stemming the growth of new cancer cells. I was involved in some of the trials and my doctor found that it was working for me. It didn’t cure the cancer, but it did stem it some and allowed me to stay at an even keel.
So I was taking the thalidomide and doing well.
Then the trial ended. And what did Celgene say? “Thanks for the help – appreciate it – no more thalidomide for you – we’re done here – move along.”
So now, I had no access to the drug that had been stemming my cancer, since Thalidomide can’t be sold in the US – it was banned. And there is no patent on Thalidomide – but no one is making it, because why would you make a drug that can’t be sold in the US? Celgene was applying for a patent to sell it in the US – and they now hold a patent NOT on the thalidomide itself, but on the delivery method – which involves a training course for doctors on who they can prescribe it to and how and under what rules (like three forms of birth control).
My doctor in Florida understood the frustration and necessity of me taking the drug, and he had other patients in the same boat, so he started getting the drug through Canada. The problem with this was that it was more expensive, and even more daunting was that it was NOT covered under insurance. And we aren’t talking about a pennies a day drug here – we are talking a drug that can cost anywhere from 3 to 7 THOUSAND dollars a MONTH. Here is a list for Vermont prescribers (these are wholesale prices, not retail). But, what are you going to do, you know? And Celgene knows this – they’ve raised the price fivefold in 6 years. The company sells a 100-milligram capsule for $70.47, and when you are on the 6 week cycle of the drug, you can be prescribed 500 milligrams a DAY.
The one thing that was a glimmer of hope in the whole thing was that Celgene had applied for their new patented method of delivery to the FDA – which meant that it would be available here in the US, and then maybe insurance would cover it, since I wasn’t buying it out of the country and it wasn’t considered “experimental” anymore. But Celgene pulled a fast one. In order to shore up their test trials, and in order to satisfy stockholders and the FDA, they only submitted their patent for NEWLY diagnosed sufferers of MM. Since MM is a progressive, fatal disease, the drug is naturally more effective on newly diagnosed patients. If the drug stems the disease in the early stages, the prognosis is better, right? Those patients who are newly diagnosed, take the drug and stop the progression are going to live longer and have a better prognosis than those in advanced stages who take the drug.
So, when the drug DID become available here in the US, I was still out of the loop and off the radar of those who could buy it, because technically I wasn’t “newly diagnosed” – even though I had ALREADY been taking the drug since I *was* newly diagnosed.
So I still can’t get the drug in the US. I still have to go to Canada and buy it there, and it still isn’t covered under insurance. Which sucks big time.
So, that’s the story of me and MM. I’m in pain pretty much 24/7. I can’t eat a lot of stuff, unless I am near a bathroom, I have a feeding tube for whatever nutrition that can provide, my skeleton looks like some weird Swiss cheese contraption, I can’t find clothes that fit me and have to make most everything I wear, I can’t see right, and I spend a lot of money every month on drugs that aren’t available to me in the US.