The Darwin Exception

because it's not always survival of the fittest – sometimes the idiots get through

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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.

Questions?

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25 Responses to “Multiple Myeloma and Me”

  1. Sandy said

    Kim,

    I went to the MM site you posted the first of this week. Was floored at the information and knowing you were part of this disease. I don’t know if I personally could move through each day as you do. And this was part of the comment recently about your take on life. How you continue to bring so many of us together and gather so much in creating a take on life we revel in.

    I too hate the drug companies, health insurance, medicare, etc. And I’d really like an explanation that makes sense to actually believe what they are doing is of benefit to anyone’s health. With all the research money being spent and ongoing reports regarding medicine coming so far to enhance our lives, the life expectancy will never be there as reported. Due to the almighty dollar. We have many cures and successful medications, but we will never be able to afford any of it.

    I had a doctor years ago that told me he was no longer taking part in research because the patent involvement had taken away true science. Even if he had found a cure, the chance of it being used would be held back due to someone having applied for a patent which may have a connection to his findings.

    A personal question which you do not have to answer. Have doctors suggested medical marijauna? I have a neurological illness which my doctor can prescibe for pain relief, among other problems. I haven’t gone that far and am not sure how comfortable this solution is personally. I have visions of smoking on the patio and the neighbors getting a whiff, calling the cops. Anyhow, not brave enough to go there. But there are hundreds using it medically in my state. It is state approved only, the federal government has not. Feds can still go after anyone using it. Another gov deal, if it works why not get with the program.

    Jeesh, got off the subject. Back to you. You have given so much with all going on in your life. Please know how much you are cared about.

  2. Sea said

    Kim, your fighting spirit in the face of your illness is an inspiration and a wake up call to those of us who whine over small inconveniences in our lives. Wishing you some relief from your pain and if you will permit it, a gentle hug for the strength you project through your words and deeds.

  3. Gail said

    Kim, This is the first I’ve heard of your disease! God bless you even more for the laughter and joy you bring to others through your Blog! I’m a nurse and I am aware of the difficulties with MM! You are living your life with much grace!

    Peace and comfort,

    Gail in NC

  4. skweekie said

    Being on the other side of the patenting process (I work for patent attorneys), I see the amount of problems inventors have in developing and protecting their products. Drug products expecially are expensive to develop. The reason drugs are cheap in other parts of the world is that they do no research, they spend no money in development or testing and they bear no burden if something goes wrong (Vioxx for example).

    However, none of this matters to those people who need the drugs. I saw on one website that Thalyomide may be available in Brazil very cheaply. I don’t know how you would contact a supplier there, but it may be worth it to look into getting it from South America instead of Canada.

  5. IndyGena said

    Kim,
    I am so sad… my heart goes out to you. I don’t even know what to say. I think “Sea” said it all. God Bless You!

  6. HT said

    Kim, thanks for explaining your situation. I read most of the archives but didn’t have the complete picture until today. I’m sort of nunb having just read it. At times like this, words are very weak vehicles. I will just say this. I admire you. I’ve grown fond of you. I thank you for all the hundreds of laughs. You are a joy beyond expectations. Please take the ZL contribution and buy a pill. I hate feeling helpless which is what I feel right now.

    HT

  7. luvgabe said

    Dear Kim:

    Words fail us in situations like this. Even with your terrible illness, you are more creative and productive than most healthy people. Please know that you are loved by many.

    From your blogs, my guess is that you are not religious. But I hope you’ll tolerate those of us who are and who have you in our prayers.

  8. Kathy said

    Kim:

    I’m so sorry. God bless you and Paul.

  9. noorbe said

    Kim,

    I have admired you for you sense of humor, your knowledge, your writing style, your beautiful sewing and knitting.
    This entry takes it to a whole new level.

    I just shared your story with my husband, and am in tears.

    You are in my thoughts Kim.
    Thank goodness for your wonderful husband Paul.

  10. tery said

    Hey Kim, I have a progressive term. illness too and know your frustration w/ drug companies-I won’t even bore you w/ the story but we have a LONG way to go with the medical and pharmaceutical and business issues. The general public has no idea what chronic and acute illness victims deal with on a daily basis with their meds and health care, never mind the disease!
    Good Luck to you.

  11. George said

    Kim —

    At this point there is nothing to add but to express my gratitude for your style, your humanity, and your grit. Thanks for sharing, even the personal details that you don’t have to.

    Have a great Christmas and Holiday Season, and keep hanging in there.

  12. Cyndie said

    Loved your coverage of the Phil Spector trial. I can only say keep on keepin’ on.

  13. Kim (Canada) said

    I share and resonate in many of the above sentiments…
    You are an incredible woman, Kim – I admire, respect, and so appreciate all that you are, and all that you bring to this world…
    I feel so many things right now, after reading “MM & Me”, … It’s really left a surging rush of emotions and reactions within me…
    I do thank you for sharing your story, and send you only the best of wishes for peace, comfort and serenity…
    I keep you (and ZL) in my thoughts this holiday season! As well, I wish you and Paul a very merry Christmas, and all the best for the coming new year!

    With hugs & chuckles,
    Kim

  14. MyrnaTurner said

    Kim, I cannot tell you how sorry I am to read this. You have such a wonderful ability to make others feel better with your wit. And your concern for ZL has exposed an enormous heart. My prayers go out for you. I am so sorry.

    God bless,

    Myrna

  15. Mindy said

    It’s always always the good ones, I’m so sorry to hear this. Insurance sucks I have worked in this field for over the last 7 years or so and it seems the more you need something the less likely you are to get it. My thoughts are with you and I hope something changes where you will be able to get what you need when you need it, cause you deserve it.

  16. Kim Rock said

    Kim,

    I had no idea. I’m so sorry that you are going through this. You and ZL are in my prayers. Merry Christmas to you and Paul.

    Big Hugs,
    Squiggy

  17. mary c said

    Kim, You have more friends than you know—many are just readers who never post, some post often, some like me post once in awhile, but we all care about you. If our thoughts and prayers could cure you, you would be dancing all night with Paul again tonight. Take care.

  18. tess said

    Thank you for sharing so much of yourself with us. I am so sorry for what you have to go through. If wishing could make it happen, then the medication would be available. I am also angry with the buracracy and suits who make decisions on paper. If only people would for an instant think about humanity with a face not just a dollar sign. If a letter-writing campaign would work, just let all your friends here know where to write…..We could be at the very least noisy, if not effective. I wish you and Paul a Merry Christmas and Happy Safe New year.

  19. Kim…

    Thanks for letting us peek into your life another day. You’re an incredible woman who continues to make this world a better place.

    Happy Holidays!

    With friendship,
    Lisa

  20. Annette said

    In a prostate cancer support group in Dallas, TX, about 9 years ago, a Urologist who spoke was sending some of his prostate cancer patients to Mexico for treatment with thalidomide. He had great results and even showed before and after xrays of men he sent to Mexico for treatment. You could see the mets or holes in the bones closed up in the “after” xrays. The Uro could not understand why old men where prohibited from getting this drug in the U.S.
    Also, can you contact the Celgene company and ask them for free Thalidomide? A lot of drug companies participate this way.

    All the best,
    Annette

  21. Gary Williams said

    Hello All,
    I’ve been recently diagnosed with multiple myeloma stage III. I would like to know about your experience with naturopathic/homeopathic treatments. I am considering bone marrow transplant in the near future and need help in projecting typical out-of-pocket costs that are usually not covered by the kind of high quality health insurance coverage that I’m fortunate to have.

    I appreciate your help.

    Gary Williams

  22. Mary said

    Kim,

    I don’t know where you currently are with your disease, but my sister got the same disease in 2006, and was able to use Thal this past year (I think, it may have been earlier, time is so messed up with me since this happened to her). I don’t know why you are unable to get a scrip for Thal…I see that most of these posts are from late 2007, and I know she has been using it this past year (2007). She resides in CT.

    I hope you are able to get this drug, as it is known to help tremendously.

    Good luck and God Bless….

  23. Roobeedoo said

    Hello there. Ever done a google search “myeloma knitting”? I did and found you! Thank you for sharing so much in this post. My husband has MM, but so far the lesions are “just” in his spine. I was shocked to hear the effect that it can have on the skull. I had no idea. And I read everything I can find on the disease just to be prepared for the next round of the battle. Like you, he was on a Thal trial (in the UK) and is now “on his own” having reached the end of the year. Scary. Waiting to see when and where it will hit him next. And trying to make it not feel like waiting! Good luck to you honey! You sound like a real feisty gal!

  24. Diana said

    Kim;

    My sister receives her Thalidomide for free, she is started on it when she was 62. She was also stage 111 – or four. When diagnosed she had lesions in the skull, hips, ribs, long bones, etc. She was anemic, hypercalcemic, hyperviscous, dehydrated……..and very very sick…..She has vision problems, and pain. She was able to get on medicade and disability. She has taken Thalidomide and Dex for free for three years. Her cancer has been at .01 ……….it was extremely high when she was diagnosed. I believe she had approx 60-70% cancer load in her marrow at diagnosis.
    Get a social worker at a hospital to help you get this drug……….THAL…..there is no reason you couldn’t!

  25. Nick Sommers said

    I enjoyed the read but if you smoke marijuana and find that you are becoming tired and de motivated and you do not want to quit using marijuana. Try vaporizing your marijuana and you will get more a of a clean headed high buzz.

    Like tobacco, marijuana smoke contains toxins that are known to be hazardous to the respiratory system. Among them are the highly carcinogenic polynuclear aromatic hydrocarbons, a prime suspect in cigarette-related cancers. These toxins are essentially a byproduct of combustion, separate from the pharmaceutically active components of marijuana, known as cannabinoids, which include THC. When you burn marijuana it produces quite a lot of tar. Pipes and joints generally do not have proper filters. Bongs are not the answer, because you inhale concentrated smoke.

    The vaporizer certainly reduces the level of tar. You will not have to worry about the harmful carcinogens your body is absorbing when you inhale marijuana smoke.

    I will suggest 2 places that I use the first one is Legal Bud!

    The second suggestion I have is Gass City!

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