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  • in reply to: Potential Hope? #61201
    kathyb
    Member

    This is wonderful news!!! Thanks for posting it. Strides in all cancer research help all of us.

    Kathy

    in reply to: SIDE EFFECTS OF CHEMO #62130
    kathyb
    Member

    I have had terrible acid reflux with every treatment. I use to take a prescription of Prilosec 40 mg and that worked great. I think I started out with 40mg twice a day as I had developed and ulcer on my esophagus which made me continuously nauseated.

    Had to change with the trial I am on now. I now take Pantorprazole Sodium 40 mg (prescription) and it completely controls the problem, even with partaking of lots of salsa.

    Pepcid AC over the counter only worked short term for me. It seems what works for some may not work for others.

    kathyb
    Member

    I agree that I would have chosen a phase II or phase III trial over a phase I trial, if such would have been available. I’m on a phase I trial, MC0811, and will be starting my 13th cycle in two weeks. They started at the lowest dosage level, which was probably lucky for me.

    I do not have your knowledge about medicines, but I totally support phase I trials and feel blessed I qualified. Most likely feel that way because so far it’s working and I am the person who has been on this trial the longest.

    Without phase I trails there would never be phase II, phase III, or the ultimate “miracle” drugs.

    in reply to: HAPPY BIRTHDAY 3 YEARS CC FREE!!!!!!!!!!!!!!!! #61499
    kathyb
    Member

    Cathy,

    Your post brings many smiles. May there be very few bumps in next 3 years.
    God bless you and the families that chose to give you life.

    Kathy

    in reply to: Anyone experiencie similar situation? #61175
    kathyb
    Member

    I’m glad you have done so well. It’s interesting how people can look at you and see this “healthy” person. A neighbor told my husband that my cancer must not be that bad because I hadn’t lost weight and still had my hair. (No longer have hair but wear a wig in public so they still can’t tell). This was during the time of my original survival diagnosis of 3-14 months. Statistic wise we do not fair well, but always remember statistics are for the masses, not the individual. I’ve way disproved them for me.

    It’s been 34 months now. Inoperable, stage IV with portal vein and hepatic artery involvement and then “disease progression” in June 11. I have presently been on a clinical trial for 10 months. Before that time I have had radiation with 24/7 5-FU and then 7 cycles of Gems/Cits.

    As for work, I quit the best job ever as soon as I was diagnosed. At the time I believed my original survival diagnosis and thought if I could get on disability I would qualify for medicare, which I wanted to be able to go out of network. Found out it takes 2 years on disability before medicare became an option. I’ve been on medicare (and have another full policy) since Dec. 11.

    I was approved for ss disability in 2 weeks. It seems bile duct cancer has been on a “special” list of conditions that get almost instant approval. There is 5 month waiting period before disability checks start, but the waiting period goes back to your first day of not working. At least it did for me. The very important thing is that you have not worked even part time, if you want to apply for disability. Your waiting period will not start until you are not working. After you get on disability they have a work program where you can work part time and still collect disabiltiy benefits.

    Some people need to work for various reason. Some for the insurance and paycheck, some for the achievements, mental health reasons, some just to keep things as normal as they can. I personally do not have those reasons and want to keep my stress level as low as possible. I had a wonderful job and supervisor who would have been very understanding, but I want to keep my stress level as low as possible. If I could not do the job as good as I wanted or took too much time off, it would have been stressful for me. I do miss work, but it’s nice to sleep in everyday until my body is ready to get up. With this chemo brain now, I couldn’t even do my former job :o)

    Wish you the best. God bless. Take care of yourself.

    in reply to: starting chemo on may 1 – any tips #60388
    kathyb
    Member

    Ash,

    When you reply to a post there is an option to “subscribe to this topic”. It’s right under the message square (when you preview message) and right above “submit reply”. Just put a check mark in the box and you will get email notification that something has been added to that thread whenever someone replies. I’m sure it’s also available if you just submit without previewing. This way, you do not have to get notifications for all threads.

    Kathy

    in reply to: Infected/clogged metal stent, please help #60433
    kathyb
    Member

    Amy,

    I have a metal stent which clogged a couple of weeks ago. Went my ambulance to Mayo and they did the ERCP about 5 hours after I arrived. Felt so much better!

    I was discourage because it had only been 6 months since my last clog. The time before that was 15 months and 5 months before that time. Anyway, the GI doc told me they sort of expect it in 6 months time. Also, my oncologist who has always told me to do anything I wanted, told me not to go on another cruise this week when my husband mentioned that we should. (We had just gotten back from a cruise when this happened). My oncologist said he hadn’t read any studies on it, but from observation they can clog up again in two weeks time maybe because there is some irritation with the procedure. There’s also the risk of infection after the procedure.

    I was diagnosed with stage 4 unresectable cc July 09. One thing I’ve learned is that you can get very sick very fast and yet feel very good 3 days later. You have to have prompt and good medical care , though.

    Hope your mom is feeling better soon.

    God bless you and your mom,
    Kathy

    in reply to: Test Without Study #59807
    kathyb
    Member

    Have a great time in Mexico. We just got back from a cruise. It was wonderful! So relaxing.

    Kathy

    in reply to: Test Without Study #59806
    kathyb
    Member

    Hope you have great news after your MRI.
    I use to have these every three months. Now that I’m on a clinical trial it’s once every two months. The ear plugs help nicely with the banging. Some MRI machines are faster than others. I have had MRI’s completed in 40 minutes or so.
    Speaking of confinement, the grand old MRI is the reason I first decided to be be cremated. At first I hated having an MRI because it felt like I was in a coffin. I’ve gotten over that and it’s not really a big deal now, but I’m still going to be cremated. Seems to me like a very “green” thing to do :-)

    Kathy

    in reply to: Awaiting diagnosis…why is this taking so long? #59593
    kathyb
    Member

    Sounds like you need to vent. I feel so bad for you and your husband having to go through this. The delays just make it harder.

    May 14th seems a long time away. Is that the soonest you could get in, or the time you wanted? I had my first appt at Mayo within a week. If you want in sooner, ask your GI doctor (or your GP doctor) if they will make an appt for you.

    Was a stent put in the bile duct? Do you know his total Bilirubin count? Ask for copies of lab work etc. It’s good to keep all this in a file.

    Kathy

    in reply to: Unusual Cholangio Guy – Survivor Against the Odds #59221
    kathyb
    Member

    Jeff,

    I’ve read a lot of the above posts, but not all. You are a very interesting person.

    Don’t believe the statistics about your situation. I was diagnosed with stage IV inoperable bile duct cancer. Almost qualified for a liver transplant but that darn tumor grew too much in the month after diagnosis. Anyway, they told me 3-14 months max. I’m now 32 months out. I’ve read online that less than 1% with inoperable live 2 years. Beat those odds :)

    I’ve had radiation and FU-5 chemo for 2 months. Think it totally killed the original tumor – my opinion because it never shrank but is consistently stable. About 7-8 months later started gems/cits as a preventative for 7 cycles. About 8 months after that ended they found a new area of disease with spots on my liver so I joined a phase I clinical trial that I’ve been on since the end of last July. The spots on my liver can’t be seen. Lymph node on my spine is shrinking and spot around my stomach is shrinking. I didn’t even realize I had one on my spine.

    We’ve been on 2 cruises since my diagnosis and we are leaving for another one tomorrow so I won’t be on the site for a bit.

    I’ve felt good most of the time. Probably had less down time and less sick days than if I would have been able to have a Whipple. We are all different.

    Don’t know what’s ahead, but my trust is in God. He is directing my path and will take me “home” when it’s time.

    And yes, I do eat 3-4 stalks of asparagus twice a day. Well, I’m actually on an asparagus break right now (like a chemo break :) ) but I plan on starting back up after the cruise. I sort of call it my probably false internet cure :) Never know, though.

    Have a great week! I plan on it.

    Kathy

    kathyb
    Member

    Percy,

    I am sorry to hear of your loss. What a beautiful tribute you gave her, and what a wonderful Christian legacy she left.

    Kathy

    in reply to: Phase I Clinical Trial Working for me #58793
    kathyb
    Member

    Tiffany,

    I got the terrible face “rash”. It actually looked like the worse case of acne a teenage boy could have. My oncologist put me on Minocycline HCL 100 mg caps twice daily. I think it’s an antibiotic, but evidently not a really strong one because it doesn’t work for other infections I might get. This med has worked wonders for me in keeping my face clear and it doesn’t affect my stomach as other antibiotics do.

    Cindy,

    My view is that a clinical trial is a great hope. Right now I would rather be on a clinical trial than standard chemo for cc. Maybe I have to think this way since I’m on a clinical trial :)

    God bless all of you,
    Kathy

    in reply to: Phase I Clinical Trial Working for me #58790
    kathyb
    Member

    Tiffany,

    GDC-0449 is also called vismodegib – brand name: Erivedge. It was just approved for “metastatic or recurrent locally advanced basal cell carcinoma in adults who cannot be treated with surgery or radiation.” That’s not what I have so it is not FDA approved for cc. The National Cancer Institute pays for this drug on my trial.

    http://www.cancer.gov/cancertopics/druginfo/fda-vismodegib

    Kathy

    in reply to: Heading to Michigan for scans. #58721
    kathyb
    Member

    Pam,

    I don’t post very much anymore. I am the cc patient and not the caregiver.

    I do understand your falling apart when things don’t seem to be as good as you want them to be. There are those who will think this is strange, but I’ve often thought I am blessed to be the one to get cc instead of one of my kids.

    My heart goes out to you. Although your news isn’t as great as you had hoped for, it is GREAT news. You’ve had shrinkage and even stable is great news. Cling on to hope.

    God bless you.

    Kathy

Viewing 15 posts - 1 through 15 (of 322 total)