Discussion Board Forums General Discussion Cancer Dance update by Lainy & Teddy

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    Hi Barb and we are so excited too. I “warned” my company about you and they are also excited. I will send you directions next week via e mail.
    You must have missed my post about T, the Radman and Insurance as I am sure you were under the RV trying to fix it! I got the denial on Friday and called the radiologist Monday and he had already got the OK!!! So we are good to go in December. No date yet but I know they will call. About the 3rd week as they won’t do anything else I am sure until January.
    Hope the traveling hotel is fixed and you have a glorious weekend!
    By the way, there is no jinx. I have always told my kids without the bad you would never know how to appreciate the good!


    boy this is getting more exciting…. the possibility of meeting even more people from this board. it’s been quite a while since i’ve actually done something for myself and meeting you and the possibility of other cholangio “associates” is truly something for ME. i’m really looking forward to that day.

    thank goodness our motorhome decided to not start today instead of waiting until next week. sooooooo, our little beach get away has been delayed until at least tomorrow…. our motorhome was towed to the “hospital” today and that bill is not cheap. such is life. so, i’m hoping we get to leave tomorrow.

    lainy, have you heard anymore about teddy’s PET? i take it you are fighting with the insurance. geez, after i asked you about you having any problems and you said no. all you need is the barb jinx. my family has a saying about me… if it wasn’t for bad luck, i wouldn’t have any luck at all… at least i can laugh about it.

    kris…. us knee scrapers are always glad to meet another one. i have fallen down many times when my husband and i were running. he’d still be talking and realize i was no longer next to him. he would look back and see me face down in the dirt. i thought that now that i am only walking, i could stay upright, but nooooooooo.

    i’m with hans.. i think you need the picks on your shoes, ice hurts… been there, done that.

    love, barb h


    I too am not graceful. I too fall off my bike all the time. Hans just laughs. I also fall down stairs, fall up stairs, and trip on nothing. Ice is a big problem. Hans threatens to buy my these overshoes with picks at the bottom that older people wear here. It might be a good idea.



    P.S. Barb there is a new gal that came on the other day, Raintree, and she lives 10 minutes from us. Her father is out of state but if she sees this I would like to also extend the invite to her if she would want to meet all of us. Raintree, Barb from Glendale, CA is stopping over Nov 28th on her way back home from Casa Grande. I think it will be about 330PM so let me know if you would like to meet up. And, Bill, if you read this and want to join us, come on over!!! Oh, my, this is so exciting!!!


    Barb, sounds like you have a game plan. But best of all, we are going to meet on Nov. 28th at our house!!!!!! We are so excited. Stay good and stay in touch.


    lainy, i saw a colo/rectal surgeon thurs (i think it was thurs) who was pretty certain that my bowels aren’t the problem. i was so anxiety ridden waiting for him (more than a hour past appointment time) that i was ready to leave. thank God he turned out to be a very nice man. he confirmed my feelings about my concern over my increasing tumor marker and prolonged increase pain. he said he would be worried to. he might order an mri of my bowels just to rule out any other possibilities. so, i am NOT going to try to taper my pain meds at this time.

    i have an appointment with a thoracic surgeon the 1st week of dec. i’ll see pain management before then and get another tumor marker plus i see my oncologist before then as well. not to mention i’ll get to see you too. :-)

    oh kris, if you read this… then you are updated on my pain battle…. however, it means i still don’t have any answers as to the increasing pain problem. i hope you are feeling better, darn disease. i was happy to read that you got a little vacation.

    my husband and i are off to be beach for 3 nights in our motorhome & i’m going to try to ride my bike a few miles while i’m there. here’s hoping i don’t crash (that one of my trade marks)… graceful i am NOT.

    much love to all,
    barb h


    OUCH! Why would he take you off all pain meds? Don’t forget our number 1 rule…how about a 2nd opinion?
    Thank you so much for the web sites on GIST. I will look them up this morning.
    My ONC said the Gleevec has major side effects and is only helpful once the GIST returns, then it takes it down very fast but doesn’t take it away. The only thing to take it away is surgery. IF it returns in the liver or lungs they can do nothing. It is scary the way it mirrors with CC! Just blows my mind that a “couple” could both get strange rare cancers. The side effects of Gleevec are pretty bad and I felt, what do I do, as I have to take care of Teddy? I thought I would float for awhile. Sorry about your insurance problems, in that respect we have had no problem. They did just deny Teddy’s PET for December but I know the RADMAN will handle it again so not worried as yet. Take care.l


    lainy, i haven’t been “on” since the 2nd of nov soooooooooo i’m way behind. however, yesterday i “ran” across a “pull-out” from a cure magazine and it is a guide to rare cancers. in it was mentioned GIST. it said that many GIST patients’ tumors have a mutation in a KIT gene and that Gleevec blocks the effects of the mutant protein that causes the cancer to grow. it said that tumor response rates up to 85% when Gleevec was given. Gleevec also deceases the change of recurrence when given after surgery to remove the tumor. there are a couple of websites you might be interested in

    http://www.gistalliance.com/magazine and http://www.rare-cancer.org/forum (for many rare cancers).

    also the national organizaton for rare disorders http://www.rarediseases.org or call 800-999-6673.

    there’s the NIH’s office of rare diseases research at
    http://www.rarediseases.info.nih.gov or call 888-205-2311.

    there’s also http://www.curetoday.com/toolbox for more resources

    maybe some of this will be of help to you

    my apologies for not being around, but as usual our soap opera continues here and i just run out of energy to keep up….. insurance battle, etc.

    i’ll be back later or sometime this weekend as i’m seeing a colorectal surgeon tomorrow to get his opinion about my increasing pain along with my ca19-9 going up at 20 points each time. teddy has me beat, i’m at 114.

    i saw my liver surgeon last week and i was stunned by his opinion this time… he wants me to taper off all pain meds but had nothing to say about my increasing tumor marker and my lungs lighting up on the pet scan. :-(



    Thinking about you both!!


    Lainy, it may not be an award anybody wants, but I am VERY grateful to you and your attitude. Your openess and willingness to share both your and Teddy’s experiences have helped me and my family tremendously as we try to navigate CC and help my mom as best as we can.

    So “thanks!” and here’s to attitude!


    Lainy and Teddy

    You are truly amazing….all the best.

    with love



    All the best to you


    Thank you all for your good wishes and same back at you!


    Sending hope of cyberknife and no reoccurance!



    Same here and I know you will both be OK because of your great attitude!

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