Topic: I never expected to be here.

Hello,
   I first started having noticeable symptoms May 2008. The usual nausea, loss of appetite, abdominal pain, etc. At first I thought maybe ulcer or gall stones. The ultrasound found gallstones and also something else; a fairly sizable mass. When my physician told me of the findings her whole demeanor changed. She became somber and said "I'm very sorry". The C word was briefly mentioned. I was devastated. Then came the usual round of CT scan and MRI. All confirmed the presence of an 11 x 7 cm mass and 2 smaller masses. Finally I had a liver biopsy which confirmed my worst fears - Adenocarcinoma, unknown primary. They were felt to be metastatic . Fortunately I was finally referred to an Oncologist, Dr. Raman Qazi, affiliated with Strong Memorial and Highland Hospitals in Rochester, NY. This was in Nov 2008. I was immediately scheduled for a PET scan and specific serology tests to determine what was going on. The PET scan showed no other tumors and a serology test confirmed CC. This month I started chemo, Gemzar 1x/wk for three weeks, then a week off. This is my week off. So far no bad side effects; I still have my waist length hair. This causes some stares when I go for chemo. "Who's the new guy", "Is he in the right office". I've lost about 25 lbs since summer but overall I'm not doing too badly. This lovely NY winter has afforded me several opportunities to go snowshoeing. I'm an also being referred to another physician to explore possibility of using ultrasound to ablate my tumors. I'm trying hard to " Keep the faith". Support of family and friends has been invaluable. I'm always getting presents of food to fatten me up.
   I always had sort of a dark sense of humor; especially since my wonderful tour of duty in Vietnam where I worked in an Evacuation Hospital . Now, at least, I won't worry about Alzeheimers  that afflicted both parent's familys.
   Thank you all for being here for me. Peace.

Re: I never expected to be here.

Well, welcome to the best little club in the world that  no one wishes to join! You know you already have this monster beaten! Just from your great attitude and sense of humor. You even have me wanting to prepare something for you to eat! It sounds like you are controlling it, instead of it controlling you and thats a winning combination. And most importantly, thank-you for serving your country and making us safe! Keep up the attitude and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: I never expected to be here.

Hi,

I also admire your attitude & sense of humor.  It is good to hear you have not had a problem with the chemo and also that you have the support of family & friends. Now you also have all of us. 

My husband was also in Nam in the 60's. He passed away last September from interaheptic bile duct cancer. He was 62.  Many had thought there was a relationship to Agent Orange, however, I have been  told it may have been caused by liver flukes which are parasites in the waters of the Asian countries.  If you search parasites liver flukes on the site there are several posts on this. You may want to check into this further.

Welcome to our club such as it is and we will look forward to hearing more from you. The best of luck to you on your journey.  Remember that there are a lot of wonderful people here willing and waiting  to help & support you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: I never expected to be here.

Dnicetry...I also would like to welcome you and appreciate your great sense of humor.  The stories are always amazing as to how this cancer is detected.  Certainly, it always comes as a surprise to us since I don't know of many people who have ever heard of this cancer prior to the diagnoses.   I was wondering about the other possible treatment suggested to you.  Have you also consulted with a radiologist? 
Great to hear that you have plenty of opportunity of enjoying the winter.  Snowshoeing is one of my favorite winter activities.  I am so glad that you have found us.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: I never expected to be here.

Dnicetry...almost a year ago, I wrote a similar topic as yours...never thought this would happen in a million years...a year later we are still fighting to win the battle my husband is fighting against this monster.  I must say...when Lainy says this is the best little club ever...she is soooo right.  It is a WONDERFUL place to come to for anything you might need. The people are amazing, wise and very, very supportive...the day my husband was diagnosed, my very best friend found this site for me...and I've been addicted ever since...wishing you all the blessings God has in store for you....welcome, welcome, welcome!

Re: I never expected to be here.

Dnicetry,
If you go to "new member" David S you will read my story. I also have a few other postings so you can search for my name. I am on the same schedule as you are with Gemzer. I am a veteran also but not from Vietnam. 24 years in the Air Force. Hang in there my brother. Attitude IS everything. God has a plan for all of us. We just may not know what it is

Re: I never expected to be here.

Hello Dnicetry and welcome. Great weather for snowshoeing, you're right! Particularly with a nor'easter on the way this week!  We are almost neighbors.... we're about 1.5 hrs. down the road in the Binghamton area. My Dad was recently diagnosed with cc. Don't believe them when they tell you this is rare. In the last couple weeks, per this board, I've heard from cc patients & family in the Binghamton & Rochester area, and my husband's grandfather also had cc. & was also local.

My little guy was born up in your neck of the woods 3 yrs. ago, at Highland Park! Dad is being treated down here in Sayre PA, at the Robert Packer-Guthrie, he has a good team.  We've also heard good things of Roswell's Dr. John Gibbs (surgery). 

That's great that the Gemzar is agreeing with you so well. Dad has been on Gemzar since Nov. and he too hasn't lost a strand of hair! 

There have been discussions on this site about possible links between cc & Agent Orange. It is my understanding that currently the VA doesn't recognize it, but some continue to fight it.  According to one gal I heard from this week, the VA does recognize ionizing radiation and bile duct cancer and they do compensate for it to the veterans exposed during a particular window of yrs.

Keep up the high spirits & best wishes to you!

-Tess

Re: I never expected to be here.

Tess.....I am interested in the comments from the representative of the VA in re: to bile duct cancer.  Do you recall whom you were speaking with?  Any information you can share would be helpful to other members on this board. 
Thanks and good wishes coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: I never expected to be here.

Hello Marion, I have sent you an e-mail offsite with contact information for Barb, she posted once or twice a couple years back. We have corresponded over the last couple weeks, off the cc site, and she has quite a story. I just dropped her a note and encouraged her to consider coming back to the site and sharing more about her story- per this thread.  We'll try & secure more details!

Best,
Tess

Re: I never expected to be here.

Thanks Tess...I have received it.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: I never expected to be here.

I  was  recently  diagnosed  w/ cc  back  in  late  Nov,,,  just  during  the  holidays.  Although  I  had  been  feeling  fatigued, starting  to  experience  night  sweats, appetite  loss...  the  diagnosis  came  as  a  complete  shock !   I  kept  inquiring  w/ my  doctor  about  other  possible  explanations:  pneumonia, viral infection, etc...    just  coincidentally  had  applied  for a  life  insurance  policy  &  the  required  blood  test  came  back  w/ alarming  results.  Then  came  the  Ultrasound, CT / Pet-scan, biopsy,  which  ultimately  confirmed  cc.  NO,  not  me,  not  at  this  time  in  my  life !    I  started  w/ a  round  of  Gemzar  (very  tolerable )  &  am  now  currently  going  thru  radiation  ( Tomotherapy )  treatments.  Tomorrow's  my last  treatment  & then  it's  another  CT  scan  to  examine  if  there's  been  any  shrinkage.   Initially,  surgery  was  ruled  out  due  to  size,  placement  of  the  tumor  ( almost  completely  covers  right  lobe & small  extension  toward  the  left ).   In  the  event  that  surgery  is  still  ruled  out,  would  like  to  hear  about  other's  experiences  w/ alternative  treatments:   Chemomemolization, Hepatic Perfusion Chemo, radioembolization.    Also,  has  anyone  explored  the  treatment  that  was  profiled  last  week  on  ABC  news:   http://abcnews.go.com/Health/CuttingEdg … amp;page=1

You'll  be  hearing  from  me  again.

Re: I never expected to be here.

Jim ,Sorry you are fighting this battle.  I would recommend  start with using the custom google search at the top of this page. This custom search is for this site dealing with what you are asking about.  Others will also volunteer as they read your post.  I wish you the best and don't hesitate to ask any questions if something is unclear, we are here to asist.  2nd and 3rd opinions can usually bring about a different approach.  Some surgeons are willing to do more than others,

Bless Ya,
Jeff G.

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

Re: I never expected to be here.

Hi Jim...Your story sounds familiar to most. This cancer creeps up on us without any warning and/or symptoms.  You did not share with us where you are being treated and if you have had the opportunity to consult with other physicians in re: to second or possibly third opinions.  I am so happy for you to be feeling as well as you describe and I am looking forward to hearing about your latest CT results. And, as Jeff has mentioned the

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: I never expected to be here.

Hello everyone, It's Larry from Wisconsin again. Dnicetry, I read your post and I had about the same symptoms in May, abdominal pain or stomach pain and that was about it, altho my urine was very dark also. I finally saw my heart doctor the first of July and he thought is was acid or stress causing it [the abdominal pain], He gave me a prescription and said if that doesn't work see him in 2 weeks. I went back to see him on the 21st of July and my blood pressure was 70/56 he slammed me right in the hospital for 2 days for tests. Was released and the next week I really had abdominal pain, my son took me to the urgent care and they checked me over [all kinds of tests again]. That was at Stoughton Hospital and they put me in an ambulance and went to St. Marys Hospital in Madison for 3 days. More tests and an ERCP, that's when they discovered the bile duct cancer. as Paul Harvey would say the rest of the story is in the introduction section on this site. I was also wondering about radiation. When a person gets radiation treatments does he/she have to have a kind of feeder needle placed in their arm so a nurse can give them injections, kind of like when they put the needle in your arm or hand when you have chemo treatments and then leave it there while you are going through radiation treatments? I really don't like the idea of that because of what I went through for 6 to 8 weeks with my bile duct drains in my abdomin, 3 of them, so very difficult when showering and just doing normal things during the day. Ok, the best of everything to you all and may God Bless.

Re: I never expected to be here.

Hi Larry, your story sounds very simular to my Dad's. He has had the biliary catheter in since Nov., instead of a stent, to divert the bile. It is through this same tube that they will administer the radiation- in his case, via brachytherapy radiation, directly into the tumor. They are expected to discuss more specs on that next week, he's been on gemzar since Nov.

Best to you!

-Tess

Re: I never expected to be here.

Hi Tess, I've just had my 9th chemo treatment last Monday [gemzar] don't know if that's my last one or not. But I sure don't like the idea of having that needle and all in my arm for the entire time I have radiation, from what I'm told will be 5 days a week for 3 weeks. I also have CHF [congestive heart failure] for which I have a pacemaker for, so they have to be careful there as that's just above where the tumor is located. Those drains I had in my abdomin were to get rid of the bile that was leaking into my abdomin because the plastic stent they placed in my left bile duct collapsed, that's when they put in 2 metal stents. One doctor told my son that at first they drained approx. 1000ml the day I was admitted to Mayo [3rd time} then when they dried up or should I say quit draining for a few days I went to Mayo and had them removed. All the best to your dad...Larry

Re: I never expected to be here.

Hello again. Thank everyone for your posts to this thread. I wish each and everyone the very best under what are very stressful times. I will be posting on the general discussion board as my saga continues