Discussion Board Forums General Discussion looking for advice 2nd opinion

Viewing 15 posts - 1 through 15 (of 39 total)
  • Author
    Posts
  • #56919
    lainy
    Participant

    Sally, I agree with Kris. Sounds like big time side effects and I would call the Doctor for some advise today! Much good luck.

    #56918
    kris00j
    Participant

    Sally:
    Definitely contact the doctor. This sounds like severe side effects. Hopefully he can find out what the problem is. My chemos were during warm weather so I don’t know about the eyes, but this sounds pretty severe.
    I hope he can straighten this out and you get some answers. Unfortunately, maybe the Xeloda/Ox cocktail is too much for her system.
    I hope she finds some relief soon.

    Kris

    #56917
    sallypa
    Member

    my sister is having a tough time with the xeloda oxiliplatin. it started tuesday and the side effects have already presented themselves. she has lost 4 pounds so far due to the nausea. touching even cool things have caused her fingers to cramp up. she put a piece of room temperature watermelon in her mouth and her tongue froze up. she went outside to try to take a walk and her eyes closed and she had to put her hands over them to warm them up so they would open enough to get back inside. its odd that cold things bother her but she isnt cold. she is wearing short sleeves and is comfortable. i cant believe the side effects after only 3 days. what is this going to be like in a month. we are going to contact the oncologist and see what he says. she is wearing gloves but says that makes her hands sweat and they are only thin cotton gloves. i feel so bad but i dont know how to help her.

    #56916
    lainy
    Participant

    Dear Sally, I dont know about the chemo but so sorry your sister had such a bad reaction. Are they suggesting another chemo? I know other on here have worn gloves to protect from the cold.

    #56915
    kris00j
    Participant

    I’m so sorry your sister had a reaction so quickly. Tell her gloves work wonders. Of course, it’s hard to cook with gloves on, but you CAN get stuff out of the fridge with gloves on. Room temp drinks for everything! Or warm. I actually still ask for drinks without ice, and often drink room temp liquids at home. After 4 months of it, I’m used to them.
    I hope it goes away rather quickly. I got thru the first treatment without reacting, but the second one I reacted. It left in a few days, though. It will build up, tho, and take longer to go away. Just remember the scarf and gloves on treatment days.
    Kris

    #56914
    sallypa
    Member

    chemo started yesterday. my sister had an immediate reaction after the oxiliplatin. she took just a sip of water and had a bad reaction. she said she felt like she couldnt breathe. the nurses helped her and after about 15 minutes she left. on the way home she had bad stomach pains and went back to the hospital. they monitored her again and sent her home. she cant open the refrigerator or touch anything cold. ct scan came back with no tumors visible. after her first surgery we would get excited about the clean scan but now there is always questions in the back of our minds as the ct scan doesnt always give an accurate reading.

    #56913
    sallypa
    Member

    had a meeting at fox chase. they concurred with oncologist at upenn and for now they also recommend the xeloda-oxiliplatin. he said if this doesnt work he wants us to come back. in the meantime he asked her to do a couple tests and he wants to review them to see if he feels tarceva would be a possibility. hopefully we wont have to go back and the xeloda-oxi will work. insurance in this country has to be revised. $5000 for tarceva. the medicine companies are out of control. also dr at upenn ordered pet scan for my sister and insurance said they will not pay. they will pay for a ct scan and if something shows up they will pay for a pet. my sister had numerous ct scans after her first surgery that showed nothing. mri done much later showed multiple tumors. dr even admitted ct scans dont always show tumors. why does an insurance company get to tell a dr what he can and cant do for a patient. they are far too powerful and should be reigned in. anyway let me get off my soapbox. we are going to upenn tomorrow and after meeting with oncologist chemo will most likely start.

    #56912
    marions
    Moderator

    Regarding Lainy’s comments: I have learned that due to the similarities of tumor characteristics in various cancers, you will see a cross-over of drugs applied to a wide array of cancer patients. Until our cancer (and the majority of other cancers) is de-mystified via molecular studies, the same drugs to treat solid and liquid tumors are used in the treatment of numerous, other cancers.

    For example: gemcitabine (Gemzar), cisplatin Platinol, are used for ovarian cancer,
    Colon cancer is treated with: 5-Fluorouracil (5-FU), Xeloda (amongst others)
    Pancratic cancer is treated with : erlotinib (Tarceva) and Gemzar and other medications.

    Hugs and love,
    Marion

    #56911
    leeann
    Participant

    Hi Derin,
    He responded the next day. I was hoping to hear that he agrees with my choice not to do, but he recomm. chemo follow by radiation even it’s not a standard care for my situation.
    Also said ultimately it’s my decision and move forward. So I’ve decided to wait till April (next CT) then I’ll talk to oncologist about my options again.

    Anyway, I send dr.Javle thank you email and I hope you won’t get in troble. He is a wonderful man for what he’s doing.

    Good luck with chemo tomorrow..hope everything goes well :)
    LeeAnn

    #56910

    Boy oh boy, it seems that I’ve gotten a lot of people to email Dr. Javle. Hope he isn’t mad at me!! He does reply almost immediately, and I’m glad to hear that he continues to do that. My email was out of the blue to him, and since the initian email he has responded when I’ve sent him brief updates on my situation as well. Gem/Cis, as everyone has said previously, is a typical ‘standard of care’ for CC. I’m going for my 2nd dose of it tomorrow. I went to Sloan Kettering and the oncologists there only recommended Gemzar. My email to Dr. Javle which I forwarded to my local oncologist who in turn talked with Sloan’s oncologist resulted in me having 2 treatments of Gemzar only, one week off, and now it will be Gem/Cis for the forseeable future. Positive in my case, this is adjuvant only, all clean margins!! Wish you luck, hope everyone on your doctor’s side figure out what the best course of treatment will be…

    #56909
    sallypa
    Member

    i am so sorry for the mistake. i mixed up my drs email and dr javles. it is mjavle@mdanderson.org

    #56908
    tiff1496
    Member

    Sally- I’m on tarceva. I take 150mg every day. It is approved for lung and pancreatic cancer, but not CC. We had to fight to get my insurance to pay for it. My doctor (Dr. Javle) had to send a letter to the insurance telling them why I needed it and stuff like that. It is about $5,000.00 a month, so I hope they will pay for your sister.

    #56907
    lainy
    Participant

    Sally, go to our search engine and type in Tarceva. It seems to me that we have had some CCer’s on it and there should be some information for you. Not sure if what works for Pancreatic works for CC. Percy & Marion would know more about that one.

    #56906
    sallypa
    Member

    after meeting with oncologist chemo was put on hold until scan can be done. he is going to do either pet or ct scan and see if any tumors have returned. there just doesnt seem to be any confidence in the xeloda oxiliplatin treatment. oncologist said it is used on pancreatic cancer so they feel it should work on cc. he admits that there is not enough research being conducted on cholangiocarcinoma. my sister is going to meet with another dr who thinks she might benefit from the drug tarceva. i dont know if anyone has any information on this. from what i see it looks like it is experimental. however it is approved by the fda so insurance will cover it.

    #56905
    tiff1496
    Member

    Yes LeeAnne- Try mjavle@mdanderson.org
    I emailed him yesterday and he replied in minutes. Good luck!

Viewing 15 posts - 1 through 15 (of 39 total)
  • You must be logged in to reply to this topic.