Topic: new to group... I was diagnosed march 2007

Hi      I am a 47 y/o mom who was diagnosed with cholangiocarcinoma about a year ago.  I had been in and out of multiple hospitals  and had many awful ERCPs and developed pancreatitis from one of them.  Had my gallbladder removed...got much sicker and was transferred to Tufts NEMC in Boston ...eventually I found a liver surgeon(at Lahey Clinic..an amazing man) who was to perform a choleodocojujenostomy???? I cannot remember what the surgery was called but they opened me up and found the cancer and saw that it was not a stricture but cancer and it was also on my portal vein and in multiple lymph nodes...my dr removed as much as he could and I later began chemo and radiation...This is the abbreviated version but today a year out from diagnosis...my scans so far look good!!!..but the fear will not leave me. that it will come back.  I was told not to be surprised if it came back in 2 to 3 yrs..anyone else hear that before?  Right now I feel good and think the xeloda and radiation worked wonders although it was not easy. ok long enough huh?  look forward to hearing from others, deb

Re: new to group... I was diagnosed march 2007

Hi Deb, A rough year for you without a doubt.  I'm a nine year survivor and still fighting.  Good possibility it could return and then again maybe not.  It seems that now a days adjuvant therapy after surgery is the way to go . That was not offered or considered for me 9 years ago.  Feel good Deb and be on your guard and don't feel shy about asking for 3-4 month follow-up CT Scans.  I have come a long way only because of persistance and advocating for myself.  In reality I've got a tough road ahead still.  You have to remain positive and enjoy life the way it has been given. I certainly hope and pray that you remain cc free.  It's an unpredictable disease so keep those boxing gloves handy just in case.  Myself, chemo and radiation, and morphine continues to keep me active and with my loving family.  Stay in touch.  Hope is still in the Air!
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: new to group... I was diagnosed march 2007

ahh the fear that lingers above our heads! 

I have battled this for one year 5 months.   My fiance was diagnosed in October 2006, had surgery Jan. 2007 and is currently doing well with clear CT scans.  Again, they told us not to be surprised if it comes back and that has been a constant battle for me to just let go and live life to its fullest potential.  I wish you the best Deb. and many prayers.  Jeff has given me hope like no one else can.  9 years and still fighting and you know what... still positive.  You are amazing Jeff!  So to answer your question.  Many of us have heard that.  I try to take the good with the bad.  Life is too precious to waste it worrying.

Christina

Re: new to group... I was diagnosed march 2007

Hi Jeff, thanks so much for your reply.  AMAZING 9 YEARS for you wow!!!!! You just gave me such hope that maybe I will be able to watch my youngest little boy grow up after all!  Oh thank you  truly for  sharing your story...  As for my testing I am now having CT, PET scans or MRIs every 3 months and seeing my oncologist every 3 mos and my liver surgeon 6mos apart..yippeee I was so exhausted from all the appts as I am sure you are familiar with.  I feel bad that you still have so much pain as to need morphine.  I just stopped taking my vicoden about 2 mos ago...not fun for sure but I had problems with pain management due to how long I was on vicodan. I can honestly say that since stopping my pain meds I actually feel better..who'd of guessed.  I look forward to chatting again..thank you and Godbless you and your family..deb

Re: new to group... I was diagnosed march 2007

thank you chrissy  for your kind words.  I look forward to getting to know  all of you and share our stories.

Re: new to group... I was diagnosed march 2007

I have the same questions and did research on the matter. The placement and type tumor affects the possibity of the cancer coming back after resection. Some studies show a 31% chance of 5 year no reoccurance. However, I had a Klatskins and those studies arent so good (ranging from 0% to 10%) no reoccurance in 5 years. Adjuvent therapy also helps statistics. So life goes on. My husband and I made a promise of matching walkers when we are old, and about 3 days ago, I saw my first old couple with matching walkers and I am taking it as a sign that everything is going to be ok. IT is amazing how supersticious I have become.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: new to group... I was diagnosed march 2007

I also  hope to grow old...already there on some days but I agree I'd love to have matching walkers.  I always pictured my husband and I on our rockers looking out toward the mountain.  These days we may knock each other off our rockers. The stress this illness puts on the family is overwhelming at times.  I think he just does not get the fact that I think about my life as uncertain....and how I worry about the future.  Oh...the past few years were such a blur that I got the name of my surgery wrong...I had a roux en y hepatico jujenostomy instead of a choleodocojujenostomy..who'd of thought I'd ever even attempt to spell such big words...;}  Do most people have that surgery???  Also how do others cope with the fatigue?  My oncologist has started me on a very low dose of ritalin.. too funny because it has not made me any smarter...but it has helped some with my fatigue. I am releived to have others who understand to chat with.  Have a beautiful day.  deb :}

Re: new to group... I was diagnosed march 2007

Hi Deb,

I was diagnosed at 46 with a Klatskin tumor and had surgery, but no chemo/radiation after. Then clear sailing for 2 yrs 8 mos, until I had a recurrence, which was treated with radiation and xeloda. That shrank the tumors, and they have been sitting there doing NOTHING for a year and a half since then.

I agree with everyone else who says that this disease is really unpredictable, and every case is unique. I feel absolutely great-- no one would ever believe I am "sick"-- though this could change any time.  I think what helps is to do anything YOU can do to make yourself stronger. For me, exercise, acupuncture, and meditation-- but that's different for everyone. I accept that I'm probably not going to live to a ripe old age, but I'm sure going to enjoy the heck out of every day that I do get!

Take care!

Kristin

Peace, hope, and healing to all!

Re: new to group... I was diagnosed march 2007

Hi Deb- my husband Dave was also diagnosed in March 07.  They said he was not a candidate for surgery, but I think now we should have looked for more opinions.  We live on Cape Cod.  He had chemo here on the Cape and then they told him there wasn't much else to do and that chemo was only palliative. 
So, we went to Cancer Treatment Center of America in PA and they are using a different chemo and are now suggesting radiation.   We also have a consult in at MGH to see about microspheres.
I come here most every day for encouragement and this is a wonderfully supportive group.  Hopefully something will eventually shrink Dave's many tumors enough so that he can have surgery.  Best to you.
Patrice

Re: new to group... I was diagnosed march 2007

Hi Patrice...sorry to hear about your husband.  I am being treated at Lahey Clinic in Burlington MA.  Honestly they are amazing especially compared to all the other hospitals I have been in including NEMC.  I actually went into surgery to have a "plumbing Job" to reroute my bile duct/intestines due to a stricture. I had multiple negative brushings so was very shocked when my surgeon opened me up and right away knew he was dealing with cancer!  He 'went into cancer mode" and removed all that he could ..he was not able to remove all of it from my portal vein and I had multiple positive lymph nodes.   They   took amazing care of me at Lahey and as I said put me on xeloda and radiation and so far my scans are good.  My surgeon is a Liver surgeon one of the best in the country and a really kind man...Dr Jenkins ..I credit him and my oncologist Dr Stuart for saving my life.  Small world..my folks live on the cape too.

Re: new to group... I was diagnosed march 2007

debrah,
you have my thumbs up with Dr. Jenkins.  I am a great fan of his and Peter will join me on this one.  So glad for you.
Marions

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Re: new to group... I was diagnosed march 2007

Marion  I am so glad you know of Dr Jenkins....he is an absolutely amazing man!!!!!!!   Just before my surgery (b4 finding cc) he sat by my side (on the OR bed) and held my hand and (I may not remember exactly ) but he said he would not leave my side until "I" felt completely comfortable and had all my ?'s answered.  He is one of the most gentle brilliant human beings I have ever met .  Along with Dr Jenkins , Dr Stuart and Dr Garren (radiation oncology) that Lahey team is unbeatable from start to finish!