Introduction – Sharing my Journey
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Hi Houston Mom….this link will also inform you about chemo side effects:
http://www.cancer.net/patient/All+About+Cancer/Treating+Cancer/Managing+Side+Effects
Good luck.
MarionDear Houston Mom,
If they have not gotten you a skin care product specifically for people with chemo or radiation, please ask for it. It can make a tremendous difference. Also, the mouth of many chemo patients gets very dry, which can make cavities and mouth sores much more likely. So, talk to your dentist because there is a product for inside the mouth, too. I think it was called Biotene.
Louiseviolarob wrote:Dear Houston Mom:I was prescribed exactly the same regimen last year (gemcitabine + cisplatin) with Tarceva pill on the side. I got very good results from that combination, with several months of shrinkage and stabilization. My side-effects from Tarceva were minimal. The tumors were then killed with RF ablation. I would say give the Tarceva a try. You can always stop taking it if the side-effects get too hairy.
You mention that your new tumor is 2 cm in diameter. Have your docs mentioned radiofrequency ablation as an option? That is the perfect size tumor for RF ablation. However, they do get nervous if the tumor is too close to a major blood vessel or other sensitive structure.
I also live in Houston, and receive my care at MD Anderson. I wish you the best of luck!
Violarob in Texas
Dear Violarob,
I have been on the Tarceva for twelve days now. My side effects are minimal, and I am very thankful. Probably the worst thing has been the severely dry skin; I also have a skin rash I think I received from the sun. I do notice that I am more tired, so I started taking the medication at night. Amazingly, I have been able to lay on my right side for the first time in months!
I had my surgery at Methodist and began my chemo regimen w/ them; however, my MD Anderson doc was the one who recommended and tested me for Tarceva. He also mentioned RF ablation as a possibility if they can “arrest” the cancer for 4-6 months. I
Dear Houston Mom:
I was prescribed exactly the same regimen last year (gemcitabine + cisplatin) with Tarceva pill on the side. I got very good results from that combination, with several months of shrinkage and stabilization. My side-effects from Tarceva were minimal. The tumors were then killed with RF ablation. I would say give the Tarceva a try. You can always stop taking it if the side-effects get too hairy.
You mention that your new tumor is 2 cm in diameter. Have your docs mentioned radiofrequency ablation as an option? That is the perfect size tumor for RF ablation. However, they do get nervous if the tumor is too close to a major blood vessel or other sensitive structure.
I also live in Houston, and receive my care at MD Anderson. I wish you the best of luck!
Violarob in Texas
Hi HoustonMom,
Welcome to the site and thanks for sharing your story with us all. Since you’ve been reading the posts here for a while, I’m sure you will know that we are a friendly bunch and you will get lots of support and help here. I know the site has been a great help to me since my dad was diagnosed last year.
Thats good news on the CT scan in Sept and I’m hoping that the chemo works for you and does it’s job. Can’t offer any thoughts on chemo treatments as my dad never underwent that.
Good luck and my best wishes to you and your family.
Gavin
Hi,
Welcome, don’t be shy, here is a link to one of the posts on Tarceva:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2239
Patty
I am glad you finally decided to post and share your story so we can offer advice and comfort.
I am not sure about Tarceva, but I think jur77 was on a study mixing that with another drug whose name just flew out my head though I think it also started with a “t”. You might want to search for his posts and do just a search with Tarceva. I have not been on it, so I an not offer any insight.
Are they considering radiation at all?
Please let us know how things progress and good luck on the chemo. SHRINK those tumors and prove that the portal vein is NOT involved.
Kris
Hello Houston Mom…..Yes, no new growths always is good especially, with this cancer. You may want to read up on some of the postings regarding Tarceva by using the “Search Function” on top of the page, left hand side or, “Google” on right hand side of page. Simply, enter “Tarceva” and previous threads will appear. It always is difficult to make a decision about treatment options and I don’t believe for there to be an easy answer. But, when armed with as much knowledge as possible, the choice becomes clearer. I am sending all my best wishes to you.
MarionWelcome to our world, HoustonMOM, where you will find the most caring and loving people from around the world. Sounds to me like your doctors are spot on and with your attitude being so wonderful you have a good chance of getting your wishes. Please keep us posted.
Hello,
Welcome and thanks for sharing your story. I don’t have any helpful information for you, but am sure some of the others will have. Sharing the good as well as the bad is beneficial to everyone. I am glad things are going along well for you and hope to hear more good news from you in the future.
You will find that the people on this site on the most helpful, caring supportive people you will ever want to know. You are in the right place.
Take Care,
DarlaHi~just wanted to welcome you to the site. Congrats on your Sept. scan. Wishing you all good things, and hope to hear from you again.
Jolene
I’ve been reading through the discussion boards this past year and have found the posts to be very helpful. I feel it’s time to share my story, and hopefully begin discussions with others who are on this same journey.
I was diagnosed with cholangiocarcinoma in December, 2008. I had an 8.5 cm tumor removed through a liver resection, followed by five treatments of high-fraction radiation and three weeks of Xeloda due to a small positive margin on my portal vein.
In July 2009 a new tumor (approximately 2 cm) showed up on my CT scan. Due to the location from the original tumor, my cancer is now considered stage IV. There is also an area on the portal vein my doctors suspect is cancer, but it may also be due to effects of radiation. The only way to know for sure is if the area (on the portal vein) never responds to chemo, but the tumor does. If the cancer can be arrested for roughly six months, and the concern about the area on the portal vein is resolved, then my doctors will consider a second surgery to remove the 2 cm tumor.
In the meantime, I started a regimen of Cisplatin and Gemcitabine (two weeks on and one week off) and just completed my first three cycles. My white counts were too low when I went for my last treatment, so I will now switch to one week on, one week off.
I had a CT yesterday (September 14, 2009); it shows the tumor is unchanged and that there are no new tumors. I have a very fast growing cancer, so this is good news. Better news would have been that the tumor has shrunk, but this is the next best.
I am scheduled to start Tarceva this week and have mixed feelings. I am hopeful that it may be the thing that actually shrinks my tumor, but I am also concerned about the side effects. (I have read the Canadian article citing warnings.)
I would greatly appreciate your comments about what is working, or anything else you think may be helpful. And, I hope that I may have information that is beneficial to you. Thanks for reading my story. Peace and Blessings to you all.
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