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(27 replies, posted in Introductions!)

Yes Iowa girl the best decision you did make was finding this website. I was like you and I'am not going to say I have been cancer free...I was diagnosed in Oct 09 with intrahepatic cc...met a wonderful man on this website who's mother had the same type of CC and he very unselfiously recommended a Dr to me who was able to operate on me...God willing I'am fast forwarding 4 and a half years and yes i have had 3 surgeries but I'm here loving my family and life ...You need to do what is right for you and you will know what it is...trust in yourself you know what is best for you!
Nancy

Absolutely terrific news!
Nancy

Hi Danielle...Welcome to the site...I joined here in 2009 after I was diagnosed at 51 I received an e mail from my initial introduction post from a beautiful young man whose mother had been diagnosed with the same cancer as mine...he gave me the name of a surgeon and Mt Sinai who deemed me operative when another well revered cancer center said no hope for surgery and yet here I'm 4 years later...just had a clean pet scan. I receive chemo from Dr. Howard Bruckner and Dr. Azriel Hirschfeld truly incredible oncologists...the number for their office is 718-732-4050..they are in the Bronx by the botanical gardens...they also have much experience with CC and pancreatic cancer...Have you had a 2nd opinion with a surgeon? Sometimes it can make all the difference...Best of luck to you and your Dad he is blessed to have you as a daughter and believe me we all need the support that our loved ones give. If you have any questions please don't hesitate to
e-mail me I believe my e-mail is under my profile.
Nancy

4

(9 replies, posted in Good News / What's Working)

Hello to all and I hope your holidays were merry and bright! I don't post often but I am always thinking of the wonderful people on this site..I haven't posted in a while so just a little update I was first diagnosed with CC in Oct of 2009...after stents and chemo and generally not knowing what was going on I got a 2nd opinion from Myron Schwartz at Mt Sinai who deemed me operable and I had my 1st resection in Jan of 2010....after 6 months of adjuvant chemo with Dr Howard Bruckner I was turned loose....about 2 years later I had a recurrence with 2 lesions on my liver...my second resection was in Aug of 2012....I did not choose to do chemo after this surgery. In Feb of 2013 I started to become distended and my stomach was rock hard....after a CT and ultrasound it was found that I had a lesion on my ovary so off to a Gyn/Onc Dr. Rahaman also of Mt Sinai..in March he performed a laparoscopy in which he removed my right ovary and after frozen section determined that it was CC. He then referred me back to Dr Bruckner for chemotherapy. I have been receiving treatment since April 2013 I did have 2 clean CT scans prior to my clear PET scan yesterday...i will now do maintenance chemotherapy 2 x a month and have scans every 4 months...If someone would have asked me what I thought my prognosis was 4 years ago I probably would have said not very good. It is amazing the progress although never enough that has been made in the 4 years since my diagnosis. I'am thankful for so many things! I know it's been said many, many times on this site but get 2nd, even 3rd opinions be your own advocate or have a friend or family member help you...ask questions but most of all and I know this can possibly be the most difficult don't lose hope!
Nancy

5

(20 replies, posted in Good News / What's Working)

Terrific news....here's to surgery ( who every thought that would be a fantastic word) and a very speedy recovery!
Nancy

Betsy

5 years! Congratulations and thanks so much for posting..it really gives so many hope...
Nancy

Hi Marco
I to had 2 liver resections my first was in January 2010 where my right lobe was removed....MY second was in August of 2012 where 2 lesions were removed...I did not have radiation so I can't speak for second surgeries after radiation..My surgeon is Dr Myron Schwartz at Mt. Sinai in NYC...He is my hero and an excellent surgeon! Best of luck to you!
Nancy

Lainy..I would love to kick that ovary to the curb but, right now it seems like it is doing me no harm...Marc... I'm very happy that I could bring a little light into the darkness of this disease...I'm sure you and your family were like mine...never heard of this cancer and then to be diagnosed and find out there is no cure or no definitive treatment...you have done well...I appreciate how much you would do for your Dad..my Dad is thankfully a robust 91 year old and there isn't much I wouldn't do for him..it seems like we are on different weeks for treatment but I will have a CT on the 15th of October. Hopefully we can connect at some point...I'm sure you have realized you have brought your Dad to a very special place...we feel like family at Bruckner and I hope if not now you feel that very special bond soon..
Nancy

Marc...I'm a patient of Dr Bruckner and Dr Hirschfeld..this is my second round of chemo with them...my first was after my resection in 2010 with Dr Myron Schwartz...I received 6 months of adjuvant chemo and I was cancer free for 2 1/2 years...so that says something I think about the cocktail....I did have a recurrence and Dr Schwartz again operated.....unfortunately the CC made its way to my ovaries which I had one removed just to confirm it was CC and not ovarian cancer...after my laproscopy I was found to have CC cells in my peritoneum...back to Bruckner I went ...just want to let you know I started chemo in April..had a scan in June which showed no cancer in my peritoneum...my right ovary is still misshaped but CT could not confirm that it was cancer that was causing that...there is no cancer in my liver or elsewhere just the ? of the ovary...I to went to Sloan and was originally told I was not a candidate for surgery thats when I went to Mt Sinai and Dr Schwartz for a second opinion....It will be 4 years since my diagnosis in Oct and I know I would not be responding here if I did not seek a second opinion....so you have done the right thing for your Dad in sending his records to as many as you can....needless to say I feel like I'm getting the best treatment I can...that does a lot for ones piece of mind...of course it doesn't hurt that all the people at Bruckner Oncology are just wonderful...they have an amazing group....I'm scheduled for treatment on the 25th and 26th of this month...Jackie is my nurse...she's absolutely #1 in my book...maybe I'll see you and your Dad there and we can talk some more.
Nancy

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(30 replies, posted in Good News / What's Working)

Randi...what awesome news! I'am so, so happy for you! Never ever, ever feel like you're bragging...that's nonsense....your posts give some many of us the hope we need! Kick back, relax and enjoy your whole year totally!
Nancy

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(30 replies, posted in Good News / What's Working)

Randi....Terrific news...keep moving forward....could not be happier for you...good news boosts all of our spirits...as far as the exam goes....You got that!...
Na

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(15 replies, posted in Introductions!)

Hi Dylan.....I'm also a patient of Dr Bruckner and I have had 2 liver resections with Dr Schwartz at Mt Sinai for intrahepatic CC...unfortunately I to have had a recurrence in my peritoneum and am currently receiving chemo with Dr. Bruckner and Dr. Hirschfeld in the Bronx. This is my second round of chemo with Dr. Bruckner I go for my first CT scan tomorrow and am extremely anxious about it!!! I also feel fortunate that I found Dr. Schwartz and that he directed me to Dr. Bruckner...I think everyone there is terrific! @Percy I'm currently receiving Gemzar,Irontecan,Leucovorin,5-FU and Cistplatin...originally I was receiving Oxaliplatin but unfortunately reacted to it twice so was switched to Cistplatin.....Dylan I hope we get a chance to meet! I will be going the 1st and 2nd of July...
Nancy

Pam....What wonderful news!!! Hoping for a speedy and uneventful recovery for Lauren....What strong people you are!!
Nancy

Pam...Sending positive energy and lots and lots of prayers for Laurens surgery to be a success..I know it will be..if it helps in my case I had 2 resections and never woke up with the breathing tube in my throat..they don't even insert anything until your asleep. Can not wait for your good news...
Nancy

15

(13 replies, posted in Members' Cafe)

Lainy...So happy you are feeling better...take care of #1..thats you!
Nancy

Sue...Absolutely,positively terrific news....6 years...way to go! Thank you for posting..it is so uplifting!
Nancy

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(56 replies, posted in Members' Cafe)

Gavin...Glad to hear your buggered up knee is feeling better and glad to see you posting again...Marion thank you for the update on Lainy...praying she is feeling better soon and able to go home....You...Gavin...Lainy and Pam are the constants on here...alway there to understand, encourage and educate and I thank you for that!
Nancy

Pam and Lauren.....this is just terrific news! So happy for your whole family....will be sending positive vibes and lots of prayers. Wow this just shows how much having a positive outlook, loving family and great Dcotors can do for you!
Nancy

Kathy....Terrific news thanks for posting and you are right everyone loves to read good news so you just keep on posting it!...Here's to many,  many more clean scans in your future!
Thanks again
Nancy

Darla...First of all I will be thinking of you and praying for a successful surgery...Dr. Kato seems to be the go to for this disease. Yes, most definitely apply for dissability...it can take time...if it is not going quick enough you can call and speak to someone...I did and a very nice women told me if I would fax my Cat scans, office notes and surgical reports it would speed up the process and it did! You may have to make some noise to get them moving...the squeaky wheel thing...as far as lodging for your family...I had my resection at Mt Sinai in NYC and I know they have a few rooms at a hotel not far from the hospital where they have deeply discounted rates...I believe they even have a few rooms in the hospital set up like small efficiency apartments....I would call NY Pres or go on their website...and see if they offer any of these things...I would think they do...another good thing NYC is not such a big tourist attraction right now so some hotels may have cheaper rates....Hope some of this helped...Best of luck to you for a successful surgery and speedy recovery!
Nancy

Holly
What wonderful news that you are going to surgery! I'm approaching the 3 year mark on the 19th of my first resection...I needed to be off chemo for at least 3 weeks prior to my surgery...so I think this is the norm...I'm thinking they would like to not have your immune system compromised at the time of surgery which chemo does.....I just had my second resection in August and I was off chemo for 4 weeks prior to that surgery....I did not do a bowel prep before either and had no complications.....I would check with your surgeon about that...I was in the hospital 5 days after both surgeries...I spent 2 to 3 days in a step down unit which has only 4 patients to 1 nurse....I was out of bed the 2nd day although I did have my catheter in for 2 days.....use the pain meds...ask for help if you need it thats what the nurses are for ...all of mine were wonderful...get up and walk if you can as soon as you can as it helps with gas pain later on.....I brought pillows in from home so I would be more comfortable and as Marion said definitely a pillow for your abdomen as any coughing or sneezing can cause pain just bending slightly and holding the pillow on your stomach helps so much....Most of all I will be thinking of you and praying for a successful surgery and a speedy recovery...
Nancy

Kris
Terrific news! So happy for you...hoping the shrinkage and inactivity continues!
Nancy

Pam
Such wonderful news! Tell Lauren to have a blast in Mexico...after all her hard work she deserves it...looking forward to even more good news! You are a terrific advocate and Mom....
Nancy

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(5 replies, posted in Members' Cafe)

Kris...Enjoyed our lunch yesterday! We did have lots to talk about....finding humor in all you have been through is a true gift! @Randi...come on down to NYC sometime and maybe all of us can get together....or maybe Lou and I will take a roadtrip one of these days....Kris again I want to let you know what a pleasure it was to meet you and I hope we can do it again...
Nancy

Kris
Totally enjoyed our lunch yesterday! Now I'm looking forward to you posting in the good news section.....you have been through so much and have stayed so positive....I admire you...hope we can meet up sometime again soon! Praying for you...
Nancy