Topic: new to site

I am 51 years old diagnosised 8/08 with cholangiocarcinoma had surgery to remove tumor and was closed up-non-operatable tumor with metal stents in place my surgeon told me I was Stage III.  I just spent the last week in the hospital for a bacteria infection in my blood because I had a stent placed and the bile backed up.  While I was in the hospital my stents where changed to metal stents so I am grateful to not have another ercp in the near future.  I met with an oncologist and radiologist while I was in the hospital and I have a follow up with both of them tomorrow to make a decision on a course of treatment.   The recommended treatment is chemo 2 cycles with gentacyabin and oxplatin and avastin then cyberknife if I am still a  candidate then chemo again.  I am thinking that I just want to go for cyberknife right now and put chemo on hold.  I don't want to miss the opportunity to have cyberknife.  My surgeon told me I have 1 to 2 years to live the fellow of my oncologist said months.....Does anyone have any thoughts.  Please help.

Re: new to site

Welcome to the site and sorry you had to find us. We are a great community and we are here to support you and answer those questions we can and share our experiences as we all go down this unwanted path.

Of course I have thoughts! Think of the doctors numbers as guidelines, as challenges...not as a set date. CC doesnt work that way so neither should you. I dont know enough about cyberknife to give an opinion, but several people here have gone through it so wait and they will chime in. Just remember there are people here who "shouldnt" be if they had listened to their doctors.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: new to site

Hello and unfortunately welcome. I assume your CC is in the liver. My husband's was in his bile duct valve and he had a Whipple surgery 3 years ago. The CC returned where his duodenum used to be. 2 top oncologists here (Phoenix) said they would ONLY recommend cyberknife. Teddy just finished 5 weeks of radiation as the Insurance company in their infinite wisdom would not ok the cyberknife without the radiation first. Oct 27th he gets a PET Scan and if there are no other hot spots at that time they will probably do the cyberknife in November.  We are so excited about this and hope it goes forward as he does NOT want chemo. What is so strange is that for everyone who has this monster there are hundreds of different reactions. It would also be wonderful if we had 100 options of choice of treatment. You will get some very good advise on our board and we also invite you to sound off when you need to. 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: new to site

Yes, my CC is in the liver my surgeon said that the portal vein runs right thru the tumor.  I am looking for anykind of hope.  I hope cyberknife will shrink this tumor and it will someday be able to be removed surgically.  Thank you everyone for your replys.
Kerry

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kleonard....I would also like to welcome you to the CC family.  Looking forward to your posting after the visit with the physicians, tomorrow.  Where are you being treated?  It might be beneficial for you to make sure to receive copies of everything pertaining to your diagnoses, surgery report, possible treatment plan, doctor's notes, lab results, etc.  You might want to consider another opinion, or two, or three when you are ready to make a decision as to how you would like to proceed from here on.  Thinking of you and sending tons of good wishes your way.

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: new to site

Hello Kleonard,
I am 43 years old and was diagnosed July 2008.   I also had a failed resection, it was in August 2008.   I am currently on chemo with gemzar & cisplantin for a total of 6 infusions, for now.  Infusion number 3 starts this Friday.   After the 6 infusions I will get another MRI & CT to compare with my baselines.   If there is shrinkage I will keep going with chemo as long as my body will let me, and as long as the chemo keeps working.   Once the tumors are small enough, to be determined by my doctor, then it will be time for radiation to get the tumors even smaller.   I am hoping to try for another resection at that point.  It's been a tough 2 months recovering from that surgery, and quite honestly part of me will dread the recovery again, but if that's what it takes then that's what I'll do.   But so far chemo has not been too harsh.  Moderate nausea, definate fatigue in the few days after treatment, no hair loss.   My doctor did not put a limit on the chemo treatments, just "as long as it keeps working" and "as long as I can take it".   I have not had any jaundice (knock wood).  I think I am one of the few that has not, at least not yet.   In the beginning I spoke with my oncologist about several different radiation options, but think I will need to wait until the time comes to know what will be best in that area.   Just keep all your options open, and good luck from me to you.

- Suzanne

Re: new to site

goodmorning  suzan,
i found some comfort in reading your story it sounds so much like mine...we went yesterday to the onco docs,the blood infection i have is holding things up a bit...i have a pic line in my arm now and as soon as it comes out we can move ahead with my chemo treatments.it seems like i have been wating forever to get started.my treatment regime will be every other week also.hope i also do not have many complications......funny i feel the same way about the thought of surgery again...it was a long long mend..but will do what i have to do ....im a bit blue today,perhaps it was just spending all day with doctor apointments yesterday...this to will pass...i will put you in my prayers and hope to hear from you again,kerry

Re: new to site

Good morning to you,
I understand about feeling blue.  Allow yourself a day here and there.   But hang in there.
I have a Power Port placed in my upper right shoulder for "plugging in" to get chemo.   The initial procedure to place it (after placement) was about 4 days of feeling like I had been hit by a truck, but after that it was business as usual.  I haven't had any problems (knock wood again).
It also seemed like for me chemo would never start.   I felt that once it started I was actively doing something to change my life back to "before".    You know what I mean?   The surgery was such a huge disappointment for me, I didn't think I would be able to get past it.   But this site has been a big help in so many ways.
Also I have had such a good experience getting chemo, because of the people that work at the cancer center where mine is administered.   They are positive and helpful, will answer any question without making me feel silly, and have given me such a FANTASTIC blend of drugs for nausea.  That's when I felt more in control, when chemo started.   I hope the same for you.
If you would like to know my combination of at home nausea meds, let me know.  Talk to you soon!

- Suzanne

9 (edited by Lisa Thu, 09 Oct 2008 11:05:21)

Re: new to site

Hi Kerry,
My story is very much like Suzanne's, except my failed resection was in March 08.

I had a Power Picc line in for a year.  Be careful with that - mine became the source of infections after a few months until it landed me in the hospital for a week with sepsis.

I just had a port-a-cath inserted last week, and they say this will be much safer.

Like Lainy says, there are so many different reactions to cc and the drugs and chemo.  Just keep hanging in there until you find one that works for you!

God bless,
Lisa

Re: new to site

hi suzanne,i sure would love to know the nausea combo that helped you.....went to my doctor yesterday and will start my chemo on the 22 or the 27..very anxious to get started...feeling good these days after clearing up this horrible infection tht landed me in the hospital..i have 8 more days of intravenus antibiotics but compozine has helped me so far with the nausea that i seem to have often..i also have zofran,yikes very expensive without insurance coverage for meds....look for you soon..hope you are well..kerry

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lisa, sorry to hear about your pic line..allthough i have it for only 2 weeks it makes me very nervous.so far so good..thanx for your kind words...be wel kerry

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marion,
i am being treated at beth isreal hosp in boston...thank for your well wishes and any helpful information,...kerry

13 (edited by marions Fri, 10 Oct 2008 18:32:28)

Re: new to site

Kerry.....so glad to know that the infection has responded to the antibiotics and that you are in good hands at Beth Israel.  In re: to the pic line....we made sure for no one to touch it without clean hands, gloves, a sterile cloth to place underneath anything to be used while working with the pic line.  I flushed it and a nurse visited once per week to make sure for everything to be in order.  Be your own advocate

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