rarebreed15

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  • in reply to: MEK 162 #88640
    rarebreed15
    Member

    As I stated on the other discussion board. I had very good results after my scan on Aug 26th, My Dr told me that the CT showed a 20% shrinkage of the tumor. She was very pleased with my results. I had only started chemo at the end of June and I am still on the clinical trial MEK 162.
    I see Dr Lowery at MSK in NYC.
    Wishing all my fellow CC people good luck with their results. My next scan will be at the end of OCT.

    _Diane

    in reply to: 1st scan since starting #89564
    rarebreed15
    Member

    Thank you all for the good wishes. I do have Biotene as well as an Orajel rinse which also seemed to help…Need to stick with rinsing with salt water too. If this is the worst thing for me…I’ll deal with it, hoping my energy and good health doesn’t change.
    Wishing everyone on here good luck with their treatment .

    Diane :)

    in reply to: new to the disease and to this link #88823
    rarebreed15
    Member

    Good luck to you Susan, I think we will buy tickets to a show for a Wednesday night since I usually get my chemo on Wednesdays. I know I will be getting my next CT on Aug 19 along with an eccho, not sure if they will have me get an mri of my spine then too. I hope I feel ok a couple of days after getting the port. I’ve been walking 2 miles most mornings before the heat hits to keep me from being lazy :)
    Have a safe trip to NYC.
    -Diane

    in reply to: MEK 162 #88638
    rarebreed15
    Member

    thanks , I guess after my next CT in Aug we’ll see how things are going. My bloodwork was good yesterday but that was before 2nd round of chemo…hope the numbers stay good :)

    in reply to: new to the disease and to this link #88821
    rarebreed15
    Member

    Hey Susan, I met with a surgeon Peter Allen and he told me that maybe down the line he would put a pump on my liver to bathe it in chemo. I’ll wait and see what happens. Kudos to you coming all that way. My day is a 12 hour day when I go to city from the time I leave my house either by train or car till when I get home in the evening. Had my second treatment with Gem/CIS yesterday and I don’t go back till 7/15 but I’m going to get a port put in so I don’t have to deal with my veins going bad later on. So I’m waiting for the scheduling department to contact me.
    I feel great this morning and got out and walked the dog first then dropped him off and went for a two mile walk. I need to be active to avoid being bored. I’m not used to not working. I usually work at a sleep away camp and I’m usually away for 9 weeks. I drive a bus there and go on trips about 5-6 days a week. Always surrounded by friends and 500 campers. Camp started yesterday and I miss it big time and i’m in contact with my friends and they say it’s just weird without me. This would have been my 8th summer. I’ll visit when I can.
    I have friends that have dropped off dinner on my days I go to the hospital so it makes it easier for us.
    Good luck with your treatment. Maybe we’ll cross paths one day. I guess you go to the third floor at 160 E 53rd? I go to the 4th floor :)

    in reply to: new to the disease and to this link #88806
    rarebreed15
    Member

    Marions,
    Yes that is the study I am on. It lists my doctor that I see at MSK.

    in reply to: new to the disease and to this link #88805
    rarebreed15
    Member

    Duke,
    Was the pain due to the combination of MEK and chemo? I know that the liver and right shoulder are somehow connected.

    Thanks for the optimism boost. It’s always been my personality to see the sunny side. I have no reason to change it. I’m hoping it keeps me healthy. Unfortunately this has kept me from doing my favorite thing which is working at a sleep away camp in upstate NY for 9 weeks. I guess I will need to find new things to keep me busy.

    Wishing everyone here positive and healthy vibes.
    -Diane

    in reply to: new to the disease and to this link #88804
    rarebreed15
    Member

    Hey Lee,
    Did your husband also have gemcitabean and cisplatin? I take the Mek162 2x a day 3 tablets…stop 2 days before the chemo and start up again the next day. This is only my 1st round so I guess after my next CT in Aug to see if there is any success.

    in reply to: new to the disease and to this link #88811
    rarebreed15
    Member

    Thanks, I have to tell you that I was so comfortable after meeting everyone at MSK. Dr Lowery is wonderful and that’s just after one meeting. This is her speciality. I didn’t think I wanted to travel back on forth to the city for treatment and with the clinical trial I have to go to that office. But everyone there makes you feel good and important. We had some questions before we were about to leave and the young woman behind the desk instead of picking up the phone and calling, went to the back and got someone in about 1 minute. They didn’t say oh we’ll get back to you or wait while I try to get someone to answer your questions. They all seem to be attentive.
    This clinical trial is in phase2 already. Hoping that it works and moves onto phase 3.
    I wish everyone on this site good luck .

    in reply to: Mom newly diagnosed with Stage IVa CC #88665
    rarebreed15
    Member

    sorry about your mom, I was just diagnosed as well, stage IV due to a spot on my spine. I’m not a candidate for transplant/or any type of surgery. I entered a clinical trial at Sloan . MEK 162 inhibitors along with GEM/CIS chemo…just started the pills this past week…getting my first chemo this Wed. Will get chemo once a week for 2 weeks and off a week…I don’t take the pills two days before and day of chemo. Hoping all this will shrink the mass and contain it. I’m hoping for the best.

    A friend of mine gave me a book that I just started reading : There’s No Place Like Hope/ A guide to beating cancer in mind-sized bites.

    I’m staying positive, for myself family and friends. Looking to have as much fun for as long as I can.

    Good luck with everything!

    in reply to: new to the disease and to this link #88808
    rarebreed15
    Member

    Thanks, always been a positive person, hoping it makes a huge difference now.
    Just curious how many people here are woman and in their 50s. Any using MEK162 inhibitors and how they’re doing with it.

Viewing 11 posts - 1 through 11 (of 11 total)
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