1

(13 replies, posted in General Discussion)

Sue - thank you so much for responding.  I am going to read your story.

Janet, Margaret and Darla - thank you all so much for the positive energy and good thoughts.  As hard as it is I am trying to stay positive. 

Lainy - Teddy truly sounds like a miracle.  He is lucky to have you taking such wonderful care of him.  Is Teddy being treated at Mayo?

Marion - I live in Philadelphia PA and am currently being treated at UPenn.  I am willing to go wherever if it would help.  Sloane would be the closest for me but if I would be better off I would go somewhere else.  I don't know how much of a difference it would make - Mayo vs. Sloane?  They may not do anything different than Penn is doing right now I just thought getting another opinion again wouldn't hurt.

Jennifer

2

(13 replies, posted in General Discussion)

Thank you all so much for your support and prayers.  This is a whirlwind for me as I was just diagnosed in December.  My head is just spinning. 

Marion - thank you so much for your advice - I have been doing some research and it seems the best place is the Mayo Clinic??  I think Minnesota is what I have been reading.

Does anyone know??

Thank you all - again.

Jennifer

3

(13 replies, posted in General Discussion)

Hi all - I am new to the site - I have only posted a few times.  I really enjoy reading everyone's experiences and I look for a glimmer of hope in everyone's stories.  I had large tumor in my bile duct which was removed by by Whipple on 12/28/09.  They believed the cancer was "gone" because nothing showed on any scans.  I started my chemo last week and went for my 2nd treatment yesterday.  However I had an MRI on Friday which showed tumors now in my liver.  They are now not planning radiation and have me on the gemzar and tarceva - seeing how I respond and if the tumors shrink.  The wind has totally been taken out of my sails.  I was looking for 2 things - the first was anyone's opinion on this treatment plan - has anyone had a similar situation?  The 2nd thing I was looking for was to hear Sue's story - I didn't know what her situation was but I was really inspired by her update on the "Good News" board.  I know she has been cancer free for 3 years.  I am looking for some good news and inspiring stories.  I am trying to stay positive and hope I can beat this evil, evil disease for my 2 small children and husband but it is getting hard.  Looking for some light here - please help smile

4

(5 replies, posted in General Discussion)

Hi Marion - thank you for your reply.  My concern was that I have already had my surgery and am starting chemo so I am concerned that the number is high.  They are going to monitor and hopefully it will fall.  I am having an MRI on Friday.  Is this the norm??

5

(5 replies, posted in General Discussion)

Hi everyone - I was just wondering if anyone had knowledge of what these tests mean??  Apparently mine were a little high but that could be a result of my whipple surgery which was done the end of December.  I started my chemo today and they are just going to watch the numbers and are hoping they decrease.  Has anyone had a similar situation?  I appreciate any info out there.  Thank you to everyone for your input.

Jennifer

I really want to thank ALL of you for responding.  It is a good feeling to know there are people out there that know exactly what I am feeling.  I have family and friends that have battled cancer but obviously no one with this.

I have been to three separate drs for opinions on my follow up treatment.  All have agreed on the chemo and radiation however 1 of the 3 was going to treat me with Gemzar and Tarceva.  The other 2 plan Gemzar and 6 weeks of radiation with 5fu.  Has anyone undergone this same treatment?  I know none of it will be pleasant but I really fear the radiation and chemo combination.  I'm assuming it will be hell.  I also did not want my 5 yr old to have to see the pump so I will do my best to conceal.

Kris - thank you for the encouraging words.  Did Sue have surgery only?

Lainy - ditto above! 

Katie - I am going to have my treatment at the Hospital of the University of Pennsylvania. 

Based on discussions with my surgeon, the "first round" of treatment doesn't really vary too much.  He said when you have issues of not responding or recurrence then maybe consider going to Sloane.

I am very anxious about beginning treatment tomorrow.  I also am nervous because I am going on Friday for MRI so keep your fingers crossed.  smile

Gerry,

I was in the hospital for 8 days.  My surgery went really well.  I was fortunate that it went so well, I had no complications at all.  I was never in terrible pain - they managed that with Morphine.  After about 5 days in the hospital they gradually introduced a liquid diet which I was able to tolerate and was on for 2 days.  Then 1 day of bland solid food.  I had nausea here and there but nothing that Zyfran (sp?) did not control.  I think the best thing I did while in the hospital was walk.  The first day after the surgery they had me walk, only a few step of course but they had me out of bed.  It was horrible.  But then every day a little more, my routine was about half hour after my pain meds kicked in I would walk.  By the time I left the hospital I was able to walk the entire floor two times around and I was doing it 3 times a day.  I've been home now about 3 weeks.  I stopped taking the pain medication last week.  I'm still a little sore - especially going from one position to another - sitting to standing or getting out of bed but a whole lot better.  The first week home was tough just trying to sleep but each day was a "little" better than the day before.  I've had nausea here and there but fortunately I have never vomitted.  I really watch what I eat - small meals throughout the day - but I am getting used to it.   

Is the norm to have the surgery after chemo or radiation?

Hi - I am a 39 yr old female and was diagnosed with bile duct cancer @ a month ago.  I have had a whipple procedure - they believe the cancer is "out" however since 12 of 40 lymph nodes were effected I am beginning chemo tomorrow (gemz.).  After a few cycles I will undergo radiation and chemo (5 fu) for about 6 weeks and then finish with more Gemz.  I feel total despair - I DO NOT WANT TO DIE.  I am sure everyone feels blindsided by their diagnosis.  Is this a death sentence??  I need some positive stories if there are any out there.  I have 2 very young children and I can't bear the thought of being unable to raise them.  Please help!!