Recently diagnosed
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Melinda,
The more I read about CC and read other peoples stories I am learning that there are no 2 cancer stories that are exactly the same. I hope that your break from chemo gives you rest and allows you to get back on your feet again. Being a nurse and going through all of this can be a good thing and a bad thing at the same time. I worked for a few years in a general ICU and I think have a different perspective of health, quality of life, and death than most people. It is good that you have the support of your husband to help with difficult decisions. I have my week off this coming week and hope to get some rest and get ready for the start of cycle 2. I am looking forward to chatting with you also. Take care and have a good holiday season.
ShariHi Shari,
Your story is almost identical to mine…at least the beginning. I am a 42 y/o female diagnosed 12-1-09 and I am a paramedic and nursing student…graduate next month. My symptoms were the same…my thoughts were also gallbladder. Had my ultrasound done and found a 10cm tumor in my liver. Things went very fast for me as well…20 days from Dx to surgery. Successful resection of 2/3rds of my liver…clean margins and no lymph node involvement. My Oncologist didn’t have me do chemo after surgery..I am not sure why. My first 3 month scan showed spots on my lungs..biopsy confirmed the metastisis. I went to Rochester for second opionion on my options but they recommended the same treatment of Gemzar and Cisplatinin. I have been doing that regimen since June with no growth and no shrinkage of tumors…stable disease. I started off well with the chemo but in the last month or so have really had some problems. I had some steroid psychosis with the decadron, so I stopped it. Since then the nausea has been horrible even with all the other antiemetics. The cisplatinin has been hard on me…numbness and tingling in my hands and feet, ringing in my ears, and severe nausea. I do the Gem/Cis on day 1 and just the Gem on day 8…and rest on the 3rd week. Twice I have only had the first week because of low WBC and/or platelets. I have just chosen to take a break for a month or at least throught the holidays. I am having some chemo anxiety issues and not wanting to feel so sick. My doc says I can have a short break and my husband (who is a RN as well) understands my decision. I still have no lymph node involvement and my liver is still clear, stage 4 regardless! I was hoping to find someone with my scenario as well. I hope your chemo goes well and I will look forward to chatting…congrats on your surgery. Take care…..Melinda
Hi Shari,
Great to hear from you again and thanks for letting us know how you are doing. Glad to hear that you have started chemo and that it is going well for you. I hope you get over your cold and that the chemo continues to go well. I will keep my fingers crossed for the best possible outcome for you. I can’t help with suggestions as to what can help you whilst undergoing chemo as my dad never had it, but I am sure that others will be along soon that can share their experiences with you. In the meantime, something that might be of interest to you is the chemo board here,
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16
I am sure that you wil find lots of posts here that will help.
My best wishes to you,
Gavin
Hello,
Thanks to everyone for the great words of support and well wishes. I feel lucky to have such a great place to come and read and find support for my CC. I started chemo this week and it has gone well so far. I did have a cold before I started, so that made things kinda crappy, but other than that I feel good. The nausea medications they gave me work wonders. I am hoping that the rest of my treatment goes as well. I have a long road left to go with my chemo treatment, but if the rest of the weeks goes as well as this first week I think I will be able to handle this. If anybody has any suggestions for me on things that helped them with chemo, I will take any advise I can get. Thanks for all of the support.
ShariHi Shari,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us here. You will find a lot of support and help from a load of very friendly people, so please keep coming back. I am very glad to hear that you were able to have a successful treatment and I hope that the chemo will be equally successful.
If you have any questions at all then please feel free to ask them and we will all help if we can. Looking forward to hearing more from you.
Best wishes,
Gavin
Shari – It is very strangefor you to hear these words but congratulations on — what I believe – will be a full recovery. The fact that you were able to have surgery and you have clean margins is a wondeful prognosis. This site will help in whatever areas you have questions. There are so many stories here and it will take you a while to navigate through all the different subject areas, but you will find whatever you need here. There are many stories and many people who will help you. The Mayo Clinic staff members are wonderful, aren’t they? Best wishes and I hope you keep feeling well with your chemo. The regime you are doing seems to be very well tolerated by most folks. – Nancy
Thanks everyone for the welcomes and good wishes.
Patty – I had been having some right upper quadrant abdomen pain for a few months and kept putting it off as my gallbladder. It wasn’t anything that affected my daily life. I was camping one weekend with my family and started to have more severe pain in my right upper and really couldn’t get comfortable. Since that was different for me I went into the clinic on Monday and just thought that it was my gallbladder acting up. They did lab work which looked good, the only liver enzyme elevated was my alkaline phosphatase. I then had an ultrasound which didn’t show problems with my gallbladder, but masses on/in my liver. I had a CT of my abdomen that day which confirmed the masses in my liver, but we didn’t know what they were. Working in the hospital, the next day I was able to review my CT with a radiologist who then did a biopsy the next day. It took a long time for the final pathology results to come back, but they did come back with atypical cells. That was a hard one to hear. My primary doctor was amazing at getting me to Mayo in Rochester as soon as possible and I met with both a hepatologist and liver surgeon the same day. They both reviewed my scan and surgery was planned. I feel so fortunate that everything went so quickly. From the time I learned I had “something” on my liver to the day I had surgery was exactly 3 weeks. They did stage my CC stage 3, mostly because I had one large tumor 20cm x 12cm x 11cm, and one smaller tumor. I recovered well from surgery and was able to return back to work in 6 weeks. I had a few bumps in the road after surgery including a large pleural effusion that had to be drained, a scare with “something” that was on the left side of my liver that turned out to be a benign focular hyperplasia which I had before surgery, and it took 7 weeks for my bile leak to seal itself so I carted around a JP drain for that long.
Marion – Chemo went great yesterday. I didn’t feel sick at all. I still don’t feel sick, but its 4am and I can’t sleep. My regimen is Cisplatin/Gemzar on Day 1 and Day 8 and Day 15 off repeated for 8 cycles. It will be a long next 6 months, but if I can feel this way with it, I think I can handle it. They premedicated me with zofran, emend, and dexamethasone. I think the insomnia might be related to the steriod.I cannot wait to read more and have some place for me to ask questions. Everybody has been awesome and so helpful.
Thanks again,
Sharisharymay….I would also like to welcome you. Resection, clean margins, no lymph node involvement makes for great news. I believe that the researcher/patient combo will serve you well with this disease. How are you faring with the chemotherapy?
Best wishes,
MarionSharimay,
Welcome! Welcome! Welcome! This is a fabby family and very loving.
Read, ask and take in all you can. It is thrilling to hear that the lymph nodes were negative and that you are on a great road to recovery!!!! Be positive and do everything you can!!!
best,Stacey
sharimay,
Welcome to the best little discussion board in the world, we have a few people on the board in the medical field and it is always so helpful. I am glad you were diagnosed quickly but curious, was your cancer found accidentally, did you have symptoms?
Patty
Sharimay, This site will provide information and support. Just use it! The only way you will receive the support and knowledge is to keep visiting and reading. I think it helps to know you are not alone in your battle. Take care. G
Sharimay, welcome to our wonderful family. Congratulations on your successful treatment. You are already a survivor! Research is the key word for CC as to be informed is to be ahead of the game. Feel free to visit us often and to ask questions, we are glad you came aboard and good luck on the Chemo.
Hi. I am 29 and was diagnosed with intrahepatic CC on 9/8/10. I underwent a partial hepatectomy and cholecystectomy on 9/13/10. They were able to remove the entire tumor and my lymphnodes were negative. I just started my chemotherapy today 11/16/10. I have been reading the discussion boards and people are so helpful. I feel lucky that it was diagnosed quickly and surgery went so well. CC is so rare, and I haven’t been able to find much about cases like mine. I am a RN and its hard to turn the researcher part of me off and just be a patient. I am wondering if other patients have cases like mine and if they have any information for me? Thanks!
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