1

(27 replies, posted in Introductions!)

Hi Chrisna, here is what I had done and I am guessing others will chime in as well.  I am almost 3 months post op and aside from adjuvant chemo and its side effects my quality of life is great.  I still have days that are more tough than others but overall I am doing really well.  Life style changes, not too many.  Though I have always been a healthy person aside from this whole cancer thing. smile  The hospital I attend is a teaching hospital and really the only option for me in my state.  There they do have a a multidisciplinary team that they refer to as the tumor review board that involves various groups of people. They review cases, my scans, labes, makes collaborative decisions and have discussions.  From my understanding you do not need a board but from what I have experienced and have read over the last year, it seems encouraged to have numerous people involved in your case. So everything I have been though over the past year, yes, has gone through the board.  Here is a rundown of the procedures I had done.  Extended right hepatectomy with incontinuity resection of the caudate lobe, with resection of intrahepatic left and intra and extrahepatic main bile duct congenital resection of the left hepatic vein with venoplasty, cholecystectomy (removed gallbladder), porta hepatis lymph adenectomy, reconstruction of 3 intrahepatic bile ducts with hepaticojejunostomies with a Roux-en-Y hepaticojejunostomy and a Roux-en-Y jejunojejunostomy.  So they took out and rerouted things quite a bit smile  It took close to 14 hours I believe. (I did copy and paste this from my chart so feel free to ask my any questions about it or you can also email me)  Blessings to you.
Porter

2

(27 replies, posted in Introductions!)

As far as my understanding surgery is the only chance of a cure from this disease.  Many, too many are not able to be have surgery and are typically diagnosed later staged and deemed in operable.  I originally was termed in operable.  After chemo and 6 months later I was told that the board approved me for surgery.  My initial reaction was ...jumping for joy. Then once reality set it was I was pretty nervous and anxious.  I do know that as far as reoccurance it is a high percentage but other than that for me the outcome has been great.  They were able to remove everything and reach clean margins and my last scan showed no evidence of disease.  So I consider my surgery a huge success smile

3

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

Wonderful news on the shrinkage.  smile
Porter

4

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

Such awesome news. So happy for you and your husband. Blessings.
Porter

Julie, that's a great story. I completely understand how you feel.  I too often focus on the negative rather than the positive, though am really trying to work on keeping up a positive attitude.  My last follow up appt with my surgeon she was on a flight for a meeting and ended up sitting next to a patient she did a resection on for CC 7 YEARS AGO!  Talk about small world smile Anywho, my surgeon often reminds me in so many words how amazing, awesome, and grateful I should be and focus on the good, and then shared that story with me.  She said the woman she did this surgery on is doing great and was on the flight I believe for vacation.  It stories like these that really give me hope.

6

(14 replies, posted in Chemotherapy)

Thank you guys so much for the responses.  Like I mentioned I kind of breezed through the gem cis so I feel like all of this is somewhat new to me as it is a new regimen.  Though I am not scheduled for more than 6 treatments just wanted to be knowledgeable and learn how to manage these symptoms, and thanks to you guys I have great advice.  Blessings all.
Porter

7

(3 replies, posted in Chemotherapy)

I don't have any great ideas but just wanted to let you know I am going through the same thing.  I am on my second treatment and I really started to set it after this infusion.  Mine is mainly due to the cold sensitivity.  Blessings to your dad and hopefully he can find a way to comfortably manage this.  As others have said I just try to be cautious of the cold and try and stay warm.
Porter

Hi Lola, in agreement with KrisV as so much depends on a bunch of different factors .  I had a long resection in January.  I am also 35.  I had a family member with me at my house for almost 2 weeks.  It was very helpful for me to have someone here at all times eventhough there were times where it felt like it was not needed.  I had comfort in knowing they were here and they helped me with anything from prepping to taking a shower to changing my drain to taking my kids to school (as I was not able to drive for 6 weeks).  Please keep us posted on your mom's surgery and I wish her the best.  Blessings.
Porter

9

(14 replies, posted in Chemotherapy)

HI all thanks for the replies.  It is definitely due to the cold sensitivity.  I have noticed pins and needles with hands and feet and on my face when it's cold outside my eyes will start twitching and my lips will start to numb up and curl.  It is very bizarre.  I messaged my team and let them know so I am not sure if they will have a different plan for me next time or not.  So far it's pretty manageable just so much more noticeable than after the first treatment.  I also feel pretty tired and wiped out and I did notice at last infusion that my platelets were kinda low.  I was surprised at this given that with this treatment it is every other week so I thought my counts would be up.  Platelets were the only thing that were a little low and the team said this is pretty normal with this regimen even with me coming every other week.  Has others experienced this with this regimen gemox?  So far this regimen is affecting me quite differently than the gem cis so I am learning to adjust to these side effects while still trying to maintain my normal life with everything else going on.  Thanks all.  Blessings and prayers to all of you, always,
Porter

10

(14 replies, posted in Chemotherapy)

Matt. Yes I emailed Lisa last night. I was hoping to meet her yesterday but it wasnt a great day for me. Maybe next time. Im two weeks on tuesday ill be there. I already have a call into office and waiting to hear back. Kris yes its pins and needles feeling and it stings real bad. Isthe cold sensitivity a kind of neuropathy? Also while walking around our hotel this morning my face was cold and stung a bit and then my eye starting twitching really bad. Assuming this is all related. I had very few side effects with gemcis so this is all new to me wink as always. Thanks guys. Hugs.
Porter

Well congrats on the scan and no new tumors. That is wonderful news. From my understanding you are correct that there is very little or no studies in regards to the effectiveness of adjuvant chemo when it comes to cc. I too had a large resection and my path report came back good and with clean margins. There is no visible evidence of disease and my personal choice and reason was my teams suggested it after consulting with multiple other teams and the Recommended it in case there are any microscopic cells we cant see.Blessings to you on your continued journey and healing process and happy to hear you have a wonderful supportive partner. wink hugs.
Porter

She is not. Her name is Sherie and she lives in Michigan. wink

13

(14 replies, posted in Chemotherapy)

Okay. I think it was mainly induced from wet and cold. But yes I will be calling them in the morning. wink thanks Marion.

Hi cc family. I have a friend who was originally deemed unoperable told she will be having surgery. Her operation is on Friday April 11th. Please keep her in your thoughts and prayers.  Blessings and hugs to you all.
Porter

15

(14 replies, posted in Chemotherapy)

Hi all I had my second treatment of gemox today. My first one went well. This time I felt some neuropathy in my hands and feet almost instantly while leaving the infusion room. Is it common for some to get hit that quickly? I would imagine it will get a little worse with each treatment but those who have been on it or have watched someone I am curious to hear your thoughts. It occurred almost immediately after I was done with I fusion. It was also sprinkling and while walking outside wow my hands feet and face started tingling and stinging. Hugs to all.
Porter

16

(13 replies, posted in General Discussion)

You're in my thoughts and prayers. You got this Lisa wink
Porter

17

(35 replies, posted in General Discussion)

Percy I know we haven't communicated personally much but you have helped me so much through my journey and your informative posts. You're in my thoughts and many blessings to you. Hugs..
porter

18

(50 replies, posted in Introductions!)

YAY, Matt as others have said  congrats on this wonderful news.  Enjoy and try not to worry about the "what ifs." Hugs and blessings.
Porter

19

(4 replies, posted in General Discussion)

Hi Meghan, I went on vacation in December and I missed a treatment.  I have also missed treatments due to having the flu and having low platelets, so my schedule has been rearranged quite a few times.  Of course this is a personal decision on your moms part as to what she wants to do.  But I say if your mom wants the extra time on the trip and feels good, go for it. My ONC has always been really flexible and understanding, and works around me not necessarily the other way around. smile
Porter

20

(12 replies, posted in In Remembrance)

Clare hugs and blessings to you.  Maybe she be laughing and dancing and having a grand old time upon the stars. 
Porter

21

(11 replies, posted in Introductions!)

HI Mendi and welcome to the site.  Sorry to hear about your dads diagnosis. You mentioned they did offer him chemo.  Is their a plan set in place, or has he decided if that is something he wants to do or not?
I was diagnosed last year and I was shocked by my diagnosis and yes was in otherwise healthy conditions.  I never felt sick (aside from abdominal pain) never looked sick, and have very little symptoms so I definitely understand how you guys feels about that.  So it is good to hear that he feels pretty good and I hope he stays feeling good for a long time.  Hugs and blessings to you and your family.
Porter

22

(8 replies, posted in In Remembrance)

I am so sorry for your loss and my condolences as well to you and your family.  May she be at rest and peace.  May you find peace as well and take time to heal and grieve.  Hugs and blessings to you.
Porter

23

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

What great news and very happy to hear that.  Yay for you. 
Porter

Hi Jules, I know nothing about SIRT but wanted to say that it was good to hear from you and get an update on your mum. I am glad that she still has options as far as treatment and hope that it all goes well for her.  And wonderful to hear that she is symptom free. Take care and hugs and blessings to you all.
Porter

Hi Carla and welcome to the site.  Yes this cancer is still considered rare yet it unfortunately is on the rise and is starting to get noticed in younger adults as well.  I was diagnosed with Intrahepatic Cholangio in July of last year and I was 34, mother of 2 and felt exactly how you are (turned35 in March smile )  My tumor was about 17-18cm when finally diagnosed.  I too was told inoperable, no lymph involvement, and it was all contained in the liver.  They started me on Gem/Cis in August and mine was able to shrink enough in it's location and I became a resected candidate in January of this year. A lot of mine had to do with the location of where my tumor was and was contained all in one lobe.Do you know where your tumor is located? And to answer a couple of your questions...How do you relax and get this off your mind? I am sure we all have our different outlets and some days it is much more difficult to "take a break" from the world of CC. I try to do things to keep me distracted and busy.  When I have my kids that is pretty easy to do they keep me on my feet.  I also started taking lots of walks and little hikes and listen to music.  I also take medication for anxiety when feel needed which also I find really helpful and helps sometime take the edge off or let's my mind relax for a minute. As far as tips to continue your journey...You are off to a wonderful start and it seems like as much as you have gone through over the last little bit that you have a very strong determined positive attitude.  Get as educated as you can about this disease (hence why I am so grateful for this site)  and try to get multiple opinions.  You just never know that one might have different info and input than the other.  So continue what you are doing smile You are definitely on the right path and we are all here to support you and answer any questions you might have.