mark-s

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

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.

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.

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

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