September 27, 2010 at 9:39 pm #41773
Thanks for sharing your brother’s journey. That is great news that his pain has gone away, I’ll keep him in my thoughts on Wednesday when he goes for his scan. I sometimes think all the tests (CT scan, etc) are just horrible, so I hope all goes well for him.
JaneSeptember 27, 2010 at 3:11 pm #41772lainyParticipant
To WWEMERALD and to VICTORIA: Our JeffG had Mets to the bones and he was very diligent in offering suggestions on this Board. You can look up his Posts under JeffG or Search for Bone Mets using our search engine. JeffG was a Mentor to many of us and his advise was excellent.September 27, 2010 at 1:57 pm #41771vzimarinoMember
I just wanted to tell you that my brother who was diagnosed July 1 2010 with stage IV cc has mets to the bones (spine & pelvic) and abdomanal. He is tolerating his chemo (gemzar) very well. The xeloda chemo was a very high dosage and was removed from his regime a couple of weeks ago due to swelling of feet and ankles. The swelling did indeed go away after xeloda was stopped. He is getting his first scan this Wednesday the 29th to see if chemo has helped. He says he thinks it has made a difference because he no longer has pain in pelvic or shoulder blade. You are lucky you have not suffered with pain in spine and I pray for your continued good feeling. VictoriaSeptember 27, 2010 at 3:13 am #41770marionsModerator
wwemerald…yes, Avastin has been used by other CC patients. You may google Avastin in our search function, top, and right. (Simply, enter Avastin.) Several threads will appear. I have been told unless bleeding could be an issue Avastin can boost the treatments. Of course, only your physician will know the answer to this. Also, some insurance companies do not like to cover the expense. Hopefully, your company will accept it. Best of luck,
All my good wishes,
MarionSeptember 26, 2010 at 9:54 pm #41769
I have heard of avastin, it is not standard “protocal” but if you can get it covered, I say try it because you NEVER know!!!! it could work! keep me posted!September 23, 2010 at 4:25 pm #41768
Thanks everyone for all the support!
I started my new chemo regimen yesterday with 5-FU/oxaliplatin at a reduced dose because my platelet level is still low. My doctor is looking into adding Avastin but needs to see if insurance will cover. From what I’ve read on Avastin there’s minimal improvement in survival for colorectal patients (no data for cholangiocarcinoma), so I’m not too concerned if I don’t add that to my current regimen.
The thought is to add the Avastin because my platelet counts have been sluggish to improve so adding Avastin would add chemotherapeutic effects without impacting my platelets.
Has anyone tried Avastin for cc?
Thanks again, it really helps reading about everyone and their inspirational stories.
JaneSeptember 19, 2010 at 6:32 pm #41767
I grew up with Elena and she is a wonderful woman. She set the world record for Yoga in Central Park this year!
This is the DVD I was talking about:
http://www.amazon.com/Element-Am-PM-Yoga-Beginners/dp/B001AYWY68/ref=sr_1_2?ie=UTF8&s=dvd&qid=1284921099&sr=8-2September 19, 2010 at 6:30 pm #41766
i thought i would poste this since you like yoga…..
enjoySeptember 19, 2010 at 3:28 pm #41765katieloumattMember
Welcome to the board, like the others have said I’m sorry you have had to find us but we are a friendly, supportive bunch and there are lots of other support areas on the top of the page, they appear as tabs that you cna click on.
My Dad was diagnosed last year but went straight to surgery and didn’t have chemo so I cannot comment on that. I think from what people on here say just do as much as you can on the days you feel good…. Don’t feel bad about ‘leaning’ on family and friends as I am sure they can sometimes feel helpless.
Wishing you strength on your journey, please come back and update us.
KatieSeptember 19, 2010 at 2:32 pm #41764hollandgMember
I would also like to welcome you to this site – the members here are so supportive and helpful. You have a wonderful attitude which will serve you well in your battle with CC.
Do come back and tell us how your doing.
GerrySeptember 19, 2010 at 9:42 am #41763gavinModerator
Welcome to the site. I’m sorry that you had to find us all, but thank you so much for sharing your story with us all. From what you have said it sounds like you have a great medical team around you and yes, it is so important to have supportive doctors that care about you and will go the extra mile to help you. Yes no one knows for sure how this disease will progress with each person and a positive attitude is such a good thing to have.
Yes the waiting game is something that we are all familiar with! Waiting for this, waiting for that and then waiting for some more of this, again! I went through that with my dad and it’s not good, but I guess that we all sort of get used to it. He was diagnosed back in 2008 with inoperable CC and he had a metal stent inserted and also had PDT as his treatment.
That is great to hear that you have taken up yoga and I do hope that you get a lot out of it. Yes it is good to relax and I hope this helps, my dad used to get Reikki massages to help him relax and they helped him, a lot! So much so in fact that after his first one, he fell asleep!
I hope that you keep coming back here as you will get a load of support from us all and I am looking forward to hearing more from you.
GavinSeptember 19, 2010 at 1:51 am #41762lisaParticipant
I was diagnosed three years ago at age 44. I have had stage 4 cc for about 18 months now or so. I’m still alive and kicking! I am doing well so far and there is no reason to think that you won’t do well for some time to come. Cholangiocarcinoma treats us all differently for some reason. It’s a very capricious disease.September 18, 2010 at 8:41 pm #41761lainyParticipant
Hi WWEmerald, and it sounds like you are in total control and with knowledge you are making good decisions. Your attitude is wonderful and who knows you may join our list of Miracles. We always try to stay realistically optimistic. I really believe that with your attitude you and your family will take this journey and make many pleasant memories along the way. Wishing yhou the best of luck which you have already found in your doctor and place of treatment. Please keep us posted.September 18, 2010 at 5:50 pm #41760
I love yoga when I get a chance to do it.
My girlfriend Elena Brower has a DVD on amazon AM/PM yoga, I just do the AM when I can find the time. I think all the breathing and 02 makes me feel better. My mother is 65 and was just diagnosed at JHH August 2010. My 10 year old daughter has been my strength! If you need anything please let me know. I am on facebook.
have a good day and enjoy the sunshine today!September 18, 2010 at 2:29 pm #4042
Thank you to all of you who have posted. I have been reading the posts and gaining inspiration from all of you.
I was diagnosed in April 2010 with stage 4 CC and surgery was not an option due to the widespread metastatic disease in my liver. I went through 6 cycles of Gemcitabine and Cisplatin and tolerated it very well and had much symptom improvement (decreased abdominal bloating and pain). Anticipating good results, in July I had a PET scan and CT scan which confirmed bone metastases. So once again my doctors have told me how unusual this disease is and now again to hear how bone mets is unusual. I also had a bone CT to confirm areas of disease in my spine. I am very fortunate as I don’t feel any increased pain or discomfort.
I am playing the waiting game now. My platelets have not recovered well from the gemcitabine therapy so we are waiting for them to go back up before I start my 2nd line therapy of 5-FU/Leucovorin plus oxaliplatin.
I am being seen by a wonderful doctor at Johns Hopkins Hospital who has helped guide us through this process. Because of the nature of my disease a clinical trial is not an option. Plus I have decided not to pursue a clinical trial because I want to be with my family as much as I can. After all these months with multiple appointments I’m happy to be feeling well and enjoying my family.
I have an unbelievably supportive family that includes my husband, a son who is 11 years old, and a daughter who is 9 years old. They have been wonderful and I love them so much.
I went to my first yoga class specifically for cancer patients this week. I still cry when I discuss my disease with others. But the class was very supportive and understanding and relaxing! I am thankful to be well enough to attend and feel my body again.
I have learned many things with this disease but one is to seek out supportive doctors. Don’t listen to the first oncologist who never looks at you in the eye but tells you you only have a couple of years to live. No one knows how this disease will progress and everyone is unique. Everyone is beautiful and time is irrelevant.
I send my hugs and support to everyone here!
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