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Kris, just wanted to let you guys know you are in my thoughts. Sorry Mark is having a rough time and I hope he feels better soon. Hugs.
PorterHi Vince, I had a large resection in January and I am 35 years old. My tumor was much larger than yours but all of my nodes were clear as well as had clean margins. I chose to participate in adjuvant chemo. Did they tell you what regimen they are suggesting? Though I feel like this time around it is taken a toll on me and I know there is not a lot of evidence on how effective it is…but I do not want to have any regrets and never want to look back and say…”I should have done this, or wish I would have done this” So for me, I am doing everything I can to say I gave it my all.
My biggest side effect from my regimen is fatigue and my onc recommended 3 months, and I am half way there. There is no right or wrong answer. Good luck on your journey. Blessings.
PorterHi 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.
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 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.
PorterAs 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
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.
PorterI 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.
PorterHi 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.
PorterHI 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,
PorterMatt. 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
as always. Thanks guys. Hugs.
PorterWell 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.
hugs.
PorterOkay. I think it was mainly induced from wet and cold. But yes I will be calling them in the morning.
thanks Marion.
