jenn

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  • in reply to: AZD6244 #21457
    jenn
    Member

    Hi All,

    It has been a long time since I have posted or even looked at this site. My cancer was not stopped by this drug,AZD6244. They discontinued me the end of the year. I had been in a fog. I have lost about 50 pounds since summer, and had grown pretty weak. The James decided that my best route at this time is to follow the normal protocol of gemzar and cistplatin. I began the chemo the beginning of January, but have since had many other problems. I developed blood clots in my lungs, and my ulcerative colitis became out of control, my sodium,and hemoglobin, and potassium were all out of wack.

    I have to many issues that the doctors at the James didn’t do a very good job of managing everything, and it resulted in two different hospitalizations in January. I have switched doctors, and will begin chemo again tomorrow. I am very nervous that I will return to the fog that I have been in for a few months, but am enjoying feeling well right now. We have to live in the day, and enjoy the small things. They should put all cancer patients on prednisone, or another drug to help appetite.

    Jenn
    37 – mom of 2, diagnosed May 2008.

    in reply to: CA19-9 levels #23328
    jenn
    Member

    Hi everyone,
    I have only posted once. I don’t look spend much time on the computer. I have two kids, and spend most time and energy focused on them. And I tend to get down after reading to much.

    I am very interested in the tumor markers, I guess because mine seem so high. You would think that I would be unable to function, but other than some controled pain and a little nausea I feel pretty good. I don’t have the latest markers, but should find them out next week after my visit to the Dr. but these are mine over the summer. (June – 5,000. July – 10,000. August 4 – 17,000. Aug 22 – 28,000) I started a clinical trial in September,so I find out Monday how it is working, or else I will change to do regular chemo. Hopefully this new drug AZD6244 will offer some hope.

    Jenn

    in reply to: AZD6244 #21444
    jenn
    Member

    Jeff,

    They did start the trial last fall, and they are still accepting patients, I believe I am #19 of the 35 they are looking for. The doctors and the nurses at the clinic say they are having very hopeful results. They have people that have been on the medication since December, and are still responding to the medication. The end date is 2009, for reporting purposes.

    They originally thought that this drug would aggravate heart problems, although they have found that to be false. The current study requires patients to have a ‘good’ EKG ( my medical knowledge drops off here, something about the Qtc intervals). The doctors have petitioned, and are awaiting the NCI to remove this requirement. (So it was hard to swallow that I almost was left off this study because of the EKG) But luckily I passed it. So the evaluation was as such: Physical….(vital signs), Blood work, EKG, Chest X-ray, CT scans – Tumor Measurement,and a Biopsy (they had plenty from my liver resection in May).

    I would think that some of the lab work may be a catch to exclude some people, and maybe the amount of treatment that one has previously underwent:
    Criteria:

    Received ≤ 1 prior systemic anticancer therapy, including chemoembolization
    Received prior cryotherapy, radiofrequency ablation, ethanol injection, transarterial chemoembolization, or photodynamic therapy AND meets the following criteria:

    More than 6 weeks have elapsed since any of the prior therapy described above
    Indicator lesion(s) must be outside the area of prior treatment OR must demonstrate clear evidence of disease progression if the only indicator lesion is inside the prior treatment area
    Indicator lesion must have clearly distinct edges on CT scan
    Prior radiotherapy with or without the use of a fluoropyrimidine as a radiosensitizer is allowed, provided more than 12 weeks have elapsed since treatment

    But I don’t truly understand all of the above. I am sure they can answer any questions that you may have. I am sort of new to this battle. I have had 4 doses, and so far no side effects. I am happy to just have started something.

    Jenn

    in reply to: AZD6244 #21453
    jenn
    Member

    So far so good!
    I just started yesterday.

    The last week was exhausting, many bumps in the road to try to start this drug, waiting for tissue samples, insurance denial, and anxiety forcing me to repeat my EKG 7 times before I was eligable. But we are very excited about the results they have been having. I will keep you updated through the upcoming weeks.

    This link has more information regarding the trial. It does not require a hospital stay,and the drug is fully administered at home. Follow up visits and labs every 2 weeks, and scans every 8 weeks.

    http://clinicaltrials.gov/ct2/show/NCT00553332?cond=%22Bile+Duct+Neoplasms%22&rank=18

    And thank you for the post regarding dry mouth. I went last night and stocked up on hard candies, gum, along with immodium, and compazine.

    Thanks Jenn

    in reply to: AZD6244 #21449
    jenn
    Member

    Hi,
    I am beginning the trial at Ohio State. Based on the information that they provided me they are looking for 35 patients to take part. I believe that I may be number 19, they said they are also administiring the medication out of Baylor. My oncologist and adminstrator of the trial is Dr. Tanios Bekaii-Saab. I will updated once I start the trial, which hopefully is Friday, if all the stars finally align, and the Cleveland Clinic sends my tissue samples.

    Jenn

    in reply to: AZD6244 #21446
    jenn
    Member

    Hi, I am brand new to this site. I will be starting AZD6244 next Friday. I will be able to offer my experiences after that. I am very curious to know how Dan continues to do on this medication. Where are you being treated? Thanks- Jenn

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