August 30, 2011 at 9:41 pm #52359gavinModerator
Thanks for this. I will keep my fingers crossed for your mum and hope that her chemo goes well, and of course I hope for the best possible outcome to that. Here is a link to the experiences of Gem/Cis that Percy mentions –
And there are loads of posts here on the site regarding this treatment and the search forum function at the top of the page will throw up these discussions. Please let us know how your mum gets on.
GavinAugust 30, 2011 at 4:24 am #52358marionsModerator
Janet……which ever way we chose, it always is comforting when we take charge of our illness. I wish your Mom the best of luck with her upcoming treatments. “Average” is only a calculation in where each and every person sets his/her own standard with treatments. I am wishing for the “high” for your Mom and please, keep us posted. We care.
All my best
MarionAugust 30, 2011 at 3:15 am #52357pcl1029Member
Gemzar/Cisplatin is the first-line chemotherapy for CC.
if you want to know more about this chemo treatment,you can go to this web site,look under the chemo treatment in the experience forum,you will find “the general information for 1st time gemcitabline/cisplatin TX”. It may provide you some basic info. on that regimen.
God bless.August 30, 2011 at 1:34 am #52356lainyParticipant
Ah, Janet, that sounds great. As you have seen on our site we do not listen to numbers we have fooled the experts so many times. Wishing your Mom good luck on the chemo. I am so glad you got in at JH. Please keep us updated on Mom’s Chemo progress. Job well done!August 30, 2011 at 1:06 am #52355janetinvaMember
Thank you all for the wonderful support. We saw Dr. Pawlik and Dr. Cosgrove at JH. Both were great. Today we met with a new oncologist in which mom will start the standard “best chemo mix” – Cisplatin and Gemo on a 21 day cycle and then reassess after 3 cycles. She will get her first treatment this week. They said that this mix gave a prognosis of 11 months (average), but this site seemed to offer more promise. We will see. Thank you all again!
JanetAugust 25, 2011 at 3:28 pm #52354katielinnMember
We go to Johns Hopkins for my mom as well (age 57, stage IV, numerous tumors on liver) and love them. My mom had chemo embolization by Dr. Geschwind and we find out next week how it worked. Which doctors are you working with? Dr. Pawlik? We met with Dr. Pawlik and Dr. Cosgrove on clinic day and loved them as well.
And I know what you mean about the rest thing! My mom is constantly yelling at me for not letting her carry anything, etc. She has good and bad days, so her energy level really varies. Wishing you and your mom all the best!
~KatieAugust 25, 2011 at 6:54 am #52353marionsModerator
Hello Janet….I echo everything said so far and would like to send warm wishes your way. Please, continue to reach out to this great discussion board. We are in this together.
MarionAugust 25, 2011 at 2:38 am #52352pcl1029Member
I am a patient of CC for two years.
You did the right thing to let your mom decide her limitations.Chemo may sip her energy a bit but but no means indicates any limitations of activities. She will know how far and how much she can do. so don’t worry.
BTW,when you know about what chemo next Monday and if you have questions about them,please feel free to ask .
I am not a doctor,but I learn a lot from this web site too that I think I can be of help to you in understanding this illness a bit more in the future.
John Hopkins is among the best choices for treating CC.
God bless.August 25, 2011 at 2:32 am #52351peggypMember
I also live in Virginia. My husband was diagnosed a little over 3 years ago with intrahepatic CC. He, too, had no symptoms except a small pain in his right side. After going to his GP, she sent him for a CT scan which came back showing that he had a huge mass in his liver. Within 3 weeks time, after many tests and biopsies, he was operated on at UVA. His surgeon felt he had gotten everything but that wasn’t the case. Within 7 months he had multiple tumors. John has done remarkably well considering all he went through. He does tire very easily; yet, he continues to do as much as he can on his own. Friday, he will start another cycle of chemo as his last scans showed more tumors plus some activity in his lungs and lymphnodes. John was Stage IV when diagnosed so we just thank God for every day that he gets. I hope your mom does well; I believe attitude plays a large part in this. John has always had a good attitude and tries to stay upbeat. He doesn’t like to be around negative people. You will learn a lot from this web site and some of the stories are amazing. Just hang in there for your mom and may God bless each of you. PeggyAugust 25, 2011 at 2:32 am #52350lainyParticipant
Jane, welcome to our wonderful family but sorry you had to join us. I am just overwhelmed by you and your story. What a wonderful daughter and advocate you are for your Mother. You have done everything exactly right and your Mother is so lucky to have you at her side. We all kind of find out eventually that patients do come to know their own limits. I want to send good luck to her to have an uneventful time with her Chemo. You 2 girls keep up your fabulous work! Please keep us posted as we do care.August 25, 2011 at 1:56 am #5577janetinvaMember
I fully appreciate this website. Thank you so much. I have learned so much over the past three weeks when my 69 year old mother was diagnosed. She has extrahepatic CC and the only reason why it was found was by pure accident when she started getting stomach pains. She is in Stage 3 but more likely Stage 4. We got 3 different opinions – the final one from Johns Hopkins where they intended to do a resection until they relooked at the scans and found two “suspicious” marks on her lungs that weren’t there six weeks ago. Too small to biopsy. The CC has also spread to the local lymphs. The surgeon told us it was inoperable at the present time. She will begin chemotherapy next Monday. The doctors at Johns Hopkins Liver Center were amazing. They were kind but straightforward and confident in trying to help. I went to them because of this website and that they are kind of near.
My mom has none of the symptoms except that she tires very easily. No jaundice or itching. I have been doing a lot of research to include nutrition and alternative methods such as accupuncture. She is very active but she realizes that she can’t go as long as she used to. At first I was trying to nudge her into resting more but she wouldn’t listen so now I just let her go and she finally realized she needs to rest. I am finding sometimes it is easier to let her push her limitations until she is ready to conform.
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