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Victoria and Alan’s Story (Lupus, GIST)

Alan's Story (GIST)I have Lupus and Scleroderma and my spouse has GIST (gastrointestinal stromal tumor) stage 4. This is is a very rare cancer affecting the digestive tract or nearby structures within the abdomen. He was diagnosed in 2004 and the tumor was removed only for the cancer to return in 2006 and spread to the colon and liver. He started taking Gleevec 800mg at the rate of $9,000 per month for each prescription.

A lot of doctors do not tell patients of this miracle drug (due to cost) thinking a lot of people could not afford it which I feel is so wrong. Each individual should be given the option to know about Gleevec and given the opportunity to decide whether they can afford it or not. Gleevec does work and will hold the cancer BUT ONLY works in these organs. GIST is chemo/radiation resistant so we went with the Gleevec by refinancing our home. The thing about this medication that gets me so upset is that in South America this medication is FREE due to the price we in the states pay for it. In Aug 2010, we found out the cancer has now spread to my spouse’s left lung, three new nodules have appeared on current CT Scan. Doctors have now put my spouse on Nexavar made by Bayer and the cost of this medicine is $10,00 per month – yes, we pay for it.

This medication works on all general cancer. We take it one day at a time.  Spouse has good days and bad days but still operates semi-normal. Side effects are diarrhea and nausea which Tramodol and Zolfran are prescribed for these side
effects. We are 2 sick peas in a pod that love and support each other very much – love has no boundries.

Please feel free to ask or comment on our story.

Victoria and Alan
Submitted 11-13-10

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. andrea

    How can I frame my response to an article that moves me beyond words. Adding to it all is that I know Victoria through Twitter. She is amazing and more than inspiring. I hope for the very best for her and her dear husband. This couple are two wonderful peas in a pod.

  2. Tiffany

    Love has no boundaries. Something I believe in with every fiber in my body.
    Victoria I cannot say how much my heart swelled for you when reading this.
    As if it was possible to love you more than I do already! And all because of an
    awesome tool called twitter. You inspire me in so many ways; to be a stronger person.
    To never give in to lupus. You my dear as well as the family are loved <3
    Keep on fighting!

  3. Carrie Askren tullahoma

    I am so sorry to hear of you and your spouses’ illnesses. I am touched by your love and caring. i write to you though to ask, if you have talked with the maker of Nexavar (Bayer Drugs) to see if there is patient assistance to help defray costs? I know that Novartis will help with the cost of Gleevec, because it is so ridiculously high. Please contact the LifeRaft Group, although you may have already done so.. and check. They can help you find ways to get financial assistance.. God Bless you and yours… Carrie Askren

  4. TXSpoonie

    The cost of meds infuriates me. No one should have to refinance their home, if they are even lucky enough for that to be an option, to try to fight any disease. I am glad you two fought hard and long. I am saddened to hear of Alan’s recent home-going. Not only because his life was cut short, but because you lost someone so dear and so supportive in your own struggles.

  5. Sue

    Did you try the Gleevec for lupus? I just started it for mastocytosis, but the mast
    cells also have something to do with lupus, but not sure of the mechanism.

  6. Loretta Zaversnik

    I am happy to have found this informative sight. To find it so rich in mutual support and caring is an
    inspiration. my daughter developed GIST when Gleevec was in it’s early trial stage. She has remained healthy since the treatment. It has been over 5 years.

    Just very recently she has been diagnosed with Lupus. She has an angry rash that covers a good part of her body. Not like any rash I had seen before.

    I wish I knew more about Lupus. and how do you manage with this combined with Gist.
    She has Type 1 diabetes as well. This was found after the birth of her baby. 34 yrs. ago.

    You are an amazing person. Your Love and caring for another while you are suffering too is
    healing, my prayer for you is that God will bless you and reward you with strength and courage .
    God bless you, two dear people.

  7. Loretta Zaversnik

    I was looking up Gleevec/Lupus erythematosis when I found this article. I was wondering if the two were
    in some way connected. So far, what I have found is that they are experimenting with mice, They have found that it may do some good with Lupus too. Since they are both autoimmune diseases. There may be some hope for Lupus too.

    It is heart breaking to find the cost of a life saving drug is such a difficult thing for people.
    There must be a way to be sure that it is available to any who are suffering with gist or any other disease
    that it helps.

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