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(5 replies, posted in General Discussion)

Duke
You are so right I never thought about the nibbling...LOL  I disconnect my pump and the only medical waste that needs to be taken care of is the needle which goes into the port.  I have a medical waste container that my RX plan Express scripts gave to me because I was injecting myself with neupogen. When its full I take it to my oncologist and they dispose  of it for me...I have seen other patients bring in needles in tupperware containers though. The pump I bring back to my oncologist on my next visit so I have it at home for about a month but they are very good that way....We have a friend who  lives in Lebanon about 3 miles off of 22 close to Railroad
Ave. very nice town. I don't know how long its been since you have been back but I would think things have changed but not that much there has been no major developments or construction really. Its a very nice area. Now Bridgewater on the other hand I don't think there is room for anything else...
Nancy

2

(5 replies, posted in General Discussion)

Duke
I have been coming home with a pump for 5-fu on and off for the last 5 years. It really has not affected my sleep in fact the hushed noise the pump makes when it is counting down is a little comforting....I guess I'm just used to it.  I have had no trouble with my port however, I will tell you to keep track of the tubing at all times as it can get caught on door knobs and just about anything which can lead to pulling of the tubing but it has never come out of my port. I do disconnect myself on the second day it is a very easy process.  Oh yes if you have cats watch out for them!  That tube hanging down and swinging is to much for them...my cat did slit my tubing which forced me to shut down my pump. Hope some of this was helpful good luck!
Nancy

Hello to all and I hope everyone had a wonderful summer...hard to believe they're saying its over because it was 94 degrees here yesterday! Just wanted to check in to let you all know that I had a clear CT scan last Monday....I was diagnosed in Oct of 2009....I have had 2 liver resections and a laparoscopy where they removed an ovary and fallopian tube that pathology showed had
CC....this is not the norm but there is nothing normal about CC....my oncologist and I have decided that I will have maintenance chemo 1 x a month and scan in another 4 months.  I'am just not comfortable with not doing anything....that's why the decision to have chemo or not is a very, very personal one but, for my piece of mind this is what I need to do. It will be 5 years since my first surgery in Jan 2010 and although I certainly have not been cancer free for most of the last 5 years I have lived a pretty great life. This website has been part of my life and although I do not post often I'am always reading posts just so much knowledge on here. So I would like to thank everyone for your posts because I'm sure I have learned something from each and every one of you!  Heres to another crazy 5 years! Praying for all....
Nancy

4

(15 replies, posted in General Discussion)

Bing a patient with CC for almost 5 years...there is no place I would ever go and have not gone....
Quite happy being here with all of the knowledge, compassionate and incredible people willing to share, who really get it...this website saved my life if it had no been here I would not have found my angel Marc who read my introduction and immediately got back to me with the name of a surgeon who might give me a chance for surgery as he had done for his mother and he did operate! That would not have happened had it not been for this website! My main point is that people really understand this disease here!
Nancy

5

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

Randi....This is just the best news ever! I'm so happy for you and to almost be done with your oncologist must feel well almost normal..like we know what that feels like ha! Praying for you always...

Nancy

Iowa girl....I have been on both cistplatin and oxaliplatin....has your oncologist ever recommended Emend for nausea? My second round of oxaliplatin I did have some side effects red rash itching skin so they switched me to cistplatin...also I receive my chemo slower than usual...I have no idea if that works but I have never had nausea from either of the platins and I only receive the platins alone not along with any other chemo agents. Hope you can get this nausea out of the way sending best wishes.
Nancy

7

(9 replies, posted in Thought for the Day)

Happy belated birthday Kris ....Hope you enjoyed you special day!
Nancy

8

(8 replies, posted in Introductions!)

Gramos.....So glad you posted on this website...it literally saved my life...deemed inoperable by a very reputable NYC hospital almost 5 years ago...I sought out a 2nd opinion and low and behold had not 1 but 2 resections! by Dr. Myron Schwartz at Mt. Sinai. (my hero) Had just a little bump March 2013 where I had a laparoscopy and the CC had traveled to my ovary so that and the fallopian tube were removed.  I had a clear PET scan in January 2014 and a clear CT in May...I do receive chemotherapy once every 3 weeks I consider it maintenance...just not comfortable not doing anything.....My oncologists are Dr. Howard Bruckner and Dr. Azriel Hirschfeld....Bronx NY...they do things a little different and I've at least had great success with their treatments.  They do work with several oncologists in FL although they are on the west coast and of course I can't find their  name and number right now! So I will leave you with Dr. Bruckners # and if you were interested Jackie at the front desk would be more than happy to give you their # Dr. Bruckners # is 718-732-4050...Lots of smart cookies on this website so I know you will be getting lots of good suggestions....That your husband was is good health prior to his diagnosis is a really good thing....keep fighting, keep hoping, things are changing all the time! Keeping you and your husband in my thoughts and prayers!
Nancy

Makua

Very happy to hear your son is feeling better....I had 2 liver resections with Dr. Myron Schwartz
at Mt Sinai Hospital in NYC ...I have e-mailed him and he has answered me in a very timely
manner. I believe there are others who have e-mailed him with their questions and he has answered them back without making an appointment. His e-mail is myron.schwartz@mountsinai.org   As is always said on here as many opinions you can get is good. You and your DIL are doing a wonderful job of advocating for your son. God Bless all of you and good luck.
Nancy

10

(11 replies, posted in General Discussion)

Wow this is awesome news,,,i to had 2 ok maybe 3 surgeries in the last 4 years...hope springs eternal definitely believe that....was told in 2009 I had 6 months to 1 year to live.... I don't want to say live,,,find another option  and i did
looks like you were vey aggressive also...have to be..Prayers  to you and your family because I also believe in miracles...they have happened...
Nancy

11

(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

14

(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

15

(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

20

(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

21

(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

22

(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

25

(13 replies, posted in Members' Cafe)

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