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Viewing 13 posts - 1 through 13 (of 13 total)
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  • in reply to: My mom has cancer and I would like to introduce myself, #39892
    mark-s
    Participant

    Daughter:

    Hello and welcome to the site, so sorry you had to find us but glad you did under the circumstances. Everyone I’ve experienced on the site is wonderful – very caring and helpful.

    I am 48 years old and was diagnosed in July 2009 and started gemcitabine and oxaliplatin. It worked well and shrunk the primary tumor slightly. I had to discontinue the oxaliplatin in February 2010 as it will cause peripheral neuropathy in the hands and feet after 4-6 months. If one doesn’t d/c it, the neuropathy can become permanent. Mine has improved and my oncologists warned me that it may take a year to completely go away.

    I am still on gemcitabine and now capecitabine (Xeloda), an oral form of 5-FU. I have tolerated this well so far.

    Tell your mother to hang in there and keep fighting. I know how tough this battle can be. Attitude makes a huge difference and makes the journey easier. Hang in there and lean on others at this site for assistance and support!

    Best wishes,
    Mark

    in reply to: A CC DATE with 32COUPE #39322
    mark-s
    Participant

    32Coupe & Lainy – My wife and I are looking forward to hooking up with you when we get back to our hometown of Phoenix, but not over the summer! Too hot! We have family there and most were recently out to visit us in GA, so it won’t be until Sept-Oct that we get back. Good luck,
    Mark

    in reply to: One Million Dollar Limit On Insurance #38857
    mark-s
    Participant
    S St.Germain wrote:
    Marion,
    I just reviewed our 2009 policy and there was no maximum limit, however the 2010 policy put a maximum of one million dollars. This is probably something new that the insurance companies came up with to cut costs, however it will greatly impact most people on this site if it is the new standard.

    Steve & Nancy St.Germain

    Steve –
    Welcome to the discussion boards, sorry you have to meet all of these great people under such circumstances. Here is a quote from the WHite House Q&A on Health Reform:

    “Beginning in September 2010, insurers will be prohibited from placing lifetime limits on what they will pay for your medical care, and they can only apply restricted annual benefit limits. Insurers will no longer be able to arbitrarily cancel your insurance policy when you get sick, except in cases of fraud”.

    See this link – hopefully will set your mind at ease with CIGNA.

    http://www.whitehouse.gov/health-care-meeting/reform-means-you

    Are you out west? I know CIGNA is big in CA, AZ…I went to AHS in PHX with a Steve St. Germain.

    in reply to: I gotta tattoo #38731
    mark-s
    Participant

    Haven’t had the need for a Tatoo yet, but if I do I am going to get one that says “Nuke me here” with an arrow! :-)

    in reply to: COBRA Extension Bill introduced in Congress #38725
    mark-s
    Participant

    Kris – I am with you brother! We campaigned hard to get pre-existing conditions elimination as part of the health care reform bill, and it went into effect for children this year but for adults it does not go into effect until 2014…in the meantime, the states or Fed Govt are setting up high-risk patient insurnace pools but it is not happening as fast as it could.

    I happen to live in a Southern State where the local politicians are fighting this…yes, they’re about as backwards as you can get!!!!

    Take care,

    Mark

    in reply to: Preparing family financially for passing #38148
    mark-s
    Participant

    Dear missingwayne: Haven’t been on the discussion board in a while, so sorry this reply is coming to you so late. For insurance issues and hospital bills, contact the folks at Patient Advocate Foundation (http://www.patientadvocate.org) – they may be able to assit you in setting up payment plans, etc. Have all relevant billing and insurance information ready. Good luck!

    in reply to: Soooooo tired today! #36990
    mark-s
    Participant

    Rick –

    I am into month 8 for chemo, most of which was GEMOX and Tarceva and now just gemcitabine and Tarceva, dropped the oxaliplatin after 6.5 months. Fatigue was the worst SE after peripheral neuropathy and cold sensitivity.

    I found fatigue the worst day 2-3 after infusion, but you’ll find others on this site have had a variety of experiences with fatigue. And yes, sometimes it seemed to hit me more than others and that’s when it really stunk. It was like it came in waves.
    I did find that even a little exercise helped me to combat the fatigue, I’m talking as little as 10 minutes on the treadmill and some free weights when it was at it’s worst, thankfully I can do more now. Often this would exhaust me but I think in the end it helped my body to combat the fatigue. Watch what you’re eating too – our diets tend to change and some foods can weigh you down more than others. I found myself craving lean protein and fish more which helped me avoid “food comas” after meals.

    Try your best not to dwell on it…if you find yourself sleeping all day you may want to talk to your physician as it is sometimes hard to discern fatigue from depression. God knows we’ve all got enough reason to be depressed going through this!

    Getting out of the house and taking walks, just getting outside is very helpful to me personally. If you have a four-legged friend, take them for a walk as a reason to get out.

    Hang in there, the fatigue will come and go in waves. Listen to what others suggest on this site, there is a plethora of experience here! Good luck Buddy,

    Mark S.

    in reply to: Hi from Australia #36634
    mark-s
    Participant

    Hello Kate and Welcome! I too am relatively new to this site and have been amazed at the wonderful and kind words of support and stories of tremendous courage in the face of insurmountable odds in fighting this cancer that abound on this site.

    I am so sorry to hear about your Mother. My wife lost her mother to non-small cell lung cancer in 2008 and yet it still seems so recent…I can relate how tough it is to lose someone close to you like that.

    I was diagnosed with cholangiocarcinoma in July 2009 and am now into my 7th month of chemo. Tumor is unresectable but stable right now and I am looking at some alternative therapies. It often feels like I have a time-bomb in my abdomen and some days it is dormant and other days I swear it is ticking away! So I’ve learned to take it one day at a time and try to funnel my energy into positive activities that help others like me, which in turn provide a great deal of satisfaction and catharsis to me as well.

    Stacie mentioned your desire to set up a support group down under and I think that is so great of you! We have one starting up at Emory Univ in Atlanta, Georgia and our first meeting is next month; we’ll keep you posted how it goes. I am working with some of the other volunteers to set up guidelines and protocol so that people like you do not have to reinvent the wheel every time they want to start a support group. I’ll keep you posted.

    Kind Regards,
    Mark S

    in reply to: Facebook #36204
    mark-s
    Participant

    Rick – What have you gotten yourself into???? I finally joined FB so anyone on the site feel free to reach out and just leave a message that you’re with this site as I am still learning everyone’s names. Will be recommending the site to my growing list of friends, so better start thinking about what you’re going to wear Rick!
    Mark

    in reply to: Nausea relief… #36269
    mark-s
    Participant

    Hey all – The pill you’re referring to is called Marinol (dronabinol) – it is essentially delta-9-tetrahydrocannabinol or THC. It is made by Solvay Pharmaceuticals, which recently became a wholly owned subsidiary of Abbott Laboratories. Solvay acquired Marinol in 1999 when it purchased Unimed Pharmaceuticals of Deerpark, IL.

    Marinol has two indications: It is indicated for the treatment of anorexia associated with weight loss in patients with AIDS and nausea and vomiting associated with cancer chemotherapy in patients who have failed to respond adequately to conventional antiemetic treatments.

    It is usually a second or third line antiemetic and used when the 5HT3 antagonists like Zofran, Kytril or Anzimet fail to achieve effect. One of the side benefits of the drug is an increase in appetite, which is why it is popular in patients suffering from cachexia.

    While Solvay/Abbott is not actively promoting the product to physicians, it is still being manufactured and available, often by special order at the pharmacy. The good news is that it is now a class III product and does not require special prescription writing limitations.

    Here’s a link to the product website:

    http://www.abbottgrowth-us.com/products/productgroups/productdetails/0,,8944-2-0,00.htm

    Hope that helps!

    in reply to: PICC Line? #36143
    mark-s
    Participant

    Kathy –
    I had a PICC line as it was the fastest way for my team to get me lined up for chemo on a Friday afternoon. PICC lines are usually inserted in arm and can be inserted by a nurse like an IV, whereas (in general terms) a PORT is implanted in an O/P surgery setting by a surgeon.

    I had my PICC for 4+ months and was doing chemo every 2 weeks. I opted to have the port put in last December as it really offers much more freedom; for example, with the PICC I had to have someone flush it with heparin solution every night and change the dressing at least once a week, more if heavy exercise. Because of its location, you can’t do this yourself (unless you have an extra arm and hand). I would also have to cover my arm in saran wrap as you cannot get a PICC insertion wet when showering. PICCs limit your independence somewhat but if therapy is planned for a short time they will work well.

    When I had my PORT inserted, once the incision site healed after a few days I was able to shower and swim and the chemo nurse flushes it once every two weeks. It is under the skin and a physician usually inserts it as the insertion point is close to the top of the lung, so it’s a little more involved. Pain after incision was minimal and anesthesia was light (twilight sleep). The chemo infusion insertion is with a special needle and you hardly feel anything. Everyone I have talked to has commented they were so happy to get a port – and they can last for years if necessary.
    Hope this helps! Best of luck with the Port.
    Mark

    in reply to: Just finished chemo round 1 #36076
    mark-s
    Participant

    slester –

    Glad to hear your side effects of chemo are minimal. I too am new to the site although have been on Gemzar for 7 months. Don’t worry about the staging right now, it just helps the doctors to decide on which treatment to employ. Keep the fighting spirit and we’ll all hope and pray for tumor shrinkage. Warmest Regards from North Atlanta area!
    – Mark

    in reply to: New to Discussion, 7 months into diagnosis #36183
    mark-s
    Participant

    Thank you all for the warm welcome and support. These boards are full of so many stories of individuals fighting this cancer and all have a common thread…unbridled, amazing courage in the face of incredible odds. Keep fighting! We will beat this cancer!!!!!

Viewing 13 posts - 1 through 13 (of 13 total)