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Xeloda is helping

hopeandwellness
Posts: 4
Joined: Jun 2011

I am new here.....i saw that someone asked about longterm effects of xeloda. I have neuroendocrine pancreas cancer... Is not "pancreas cancer" which is
"exocrine"....i have tumours in my pancreas and liver and others in lymphnodes.

I was diagnosed last november 2010. After 3 months of chemo in IV form that didnt work for
me and was awful....my doctors put me on Xeloda (and Temodal). So im taking pills for 2 weeks and 2 weeks off. I am on my 5th treatment now.(started feb 22).

Finally after a new ct scan in May...i had the first positive news so far....some of my tumours are shrinking....the others are the same and it hasnt spread. This was great news.
And i was so happy about it..so i will stay on Xeloda...

I have NOT had the hand/foot syndrome and i tolerate Xeloda very well. I take Temodal the last 5 days of my 2 weeks (with the xeloda).

I am so pleased that i can take a pill form of chemo.

They say that my cancer is chronic and they cant operate but i can take the chemo and
hope and pray that it keeps my tumours "under control". So far so good...

I have had no symptoms from my cancer. I had an inflamed lymphnode on my neck in Nov....had it checked....and well....it was cancer.

Its been 7 months now and its been the hardest challenge of my life....I am on sickleave
and dealing with the ups and downs and anxiety and despair and nerves and fear and the whole "process" that comes hand in hand with this ordeal.

I see a therapist, take sleeping pills and sometimes Stesolid (a sedative).

I am trying to take one day at a time.Stay positive. Its so hard sometimes and i know i have to allow myself to grieve...

Walking daily, or whenever i can, really helps....being in the nature. Eating healthy.

Also.....being on Xeloda....my blood levels are very good and my liver and kidney stats.

So.....after going on and on here....i hope other Xeloda users find this helpful...

Best wishes and hope to everyone

mr steve
Posts: 286
Joined: Sep 2009

Where are you getting treated?

hopeandwellness
Posts: 4
Joined: Jun 2011

Hi,

Im living in Sweden....been here 23 years...im American.

Im being treated at Sahgrenska University Hospital. They have one of the leading
Oncology departments in Northern Europe.

I truly hope that Xeloda/Temodal keeps working for me.

Neuroendocrine pancreas cancer is rare...but they are doing new research all the time...

Hope all is ok with you and your family

mr steve
Posts: 286
Joined: Sep 2009

Hope,

We were on the same regament. it stopped working on her tumors. we are now on Afinitor/avastin/sandostatin LAR. It seems to be working as the tumors are getting squishie and smaller (the ones that we can feel in her pelvis) do you like that medical term squishie???

hopeandwellness
Posts: 4
Joined: Jun 2011

Hi,

Been in the states for three weeks....i had a 4 week break from Xeloda(with Temodal)....now im on my 6th
2 week treatment. New scan soon....hope its still working. My blood work is still good and markers are normal. Hoping for the best.

What kind of cancer does your wife have?

How long wsa she on Xeloda?

I guess its not good to compare...since we are all so different....there are so many different kinds of neuroendocrine cancers...

Wishing you and your wife the best

mr steve
Posts: 286
Joined: Sep 2009

Her's started as islet cell in the prancreas with mets to liver, lymph nodes, pelvic area. She was on it for 9 cycles since she was having such good response to it. Then off for 8 months until we noticed tumor growth above her pelvic bone, we tried it for 3 cycles with no response and then we switched to current treatment. We get the first scan Friday to see if the other tumors are shrinking as well.

hopeandwellness
Posts: 4
Joined: Jun 2011

I wish her the best ....its always tough around the time of scans.....hang in there...

Im tryng to keep my mindset positive and trust in my medicine and its a scary thing, all of this....but...it is a rare cancer and if we can just keep it under control.....thats
the goal. They say its chronic...i really dont want to be on chemo the rest of my life...but...perhaps i can take longer breaks and there will be new and better meds soon.

My best to you both

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