Staring a new clinical trial..HELP
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Dear Peggy, “options” are good. Hoping the Xeloda works well for John. Try to enjoy this week and let us know how it goes when John starts his big X! Wishing you both the very best.
Hi Everyone,
John and I met with Dr. Hwang on Monday and he thinks John should try the Xeloda first and see if that keeps the cancer stable. He said that there’s only one clinical trial that he would consider John for right now but that probably wouldn’t begin until after Thanksgiving and he would rather hold that in his back pocket if the Xeloda doesn’t work. He, also, is concerned about John’s Kidney function and said that would have to return to a certain level before he could participate in any trial. Today, we met with the nurse practicioner at the oncologist here, and she went over the Xeloda with us. She said John may start on that sometime next week. We were just glad that there still are some options out there for him. Thanks for all of your good wishes for us. PeggyP
Hi Peggy,
I hope all goes well on the 17th for you and John. Fingers, toes and everything crossed here for you both. Please let us know how things go.
Best wishes to you both,
Gavin
Peggy…same here. Good luck and fingers are crossed. Please, let us know how things went.
All my best wishes,
MarionHi Peggy, I am excited for you for the 17th and am keeping everything crossed for a good outcome. Sometimes a new set of eyes is just what is needed for the next step to take. Wishing you the very best and can’t wait to hear the results of your visit.
Hi Percy,
Thanks for the information on Xeloda. We are scheduled to meet with Dr. Jimmy Hwang at Georgetown on Monday, Oct. 17. His nurse called yesterday and asked a lot of questions and told me I needed to get all the radiology disks from each hospital John had tests done and bring them with us when we come for our appointment. She also sent me a lot of paperwork to fill out. I think John was also taking oxiliplatin with the 5FU when he had that adverse reaction. He said that he had never felt so much pain as he did that day in his back. He also got very cold and they had to keep heating blankets to put on him. They actually gave him a morphine shot to knock him out because the pain was so bad. The oncologist said he couldn’t be sure which drug caused the reaction so he just switched over to the gemzar/cis/avastin. The nurse from Dr. Hwang’s office told me that she had already received all of John’s records from his oncologist here so hopefully between those and me Dr. Hwang will be well informed. I’m hoping that there might be something new that he will recommend. Just anything that will help keep John around for many more years.
Whitrockj,
Thanks for your good wishes and you are right; this is a roller coaster ride that we have been on for over 3 years. I hope your mom is doing better today and continues to improve. PeggyP
Hi Wittrockj,
I am sorry to hear about these latest developments with your mum. I know what you mean about how some days are tough and that it can be hard to stay strong, I went through these days as well with my dad. Your mum is such a fighter and I can tell that you are as well. What was of great help to me was coming here and posting away, everyone helped me through this and it felt good to come somewhere where people knew what I was going through. Well we know what you are going through right now and we are all here for you as well. How is your mum doing today on the new pain meds?
My best wishes to you and your mum,
Gavin
wittrockj….My motto is: First you cry and then you fight. You hang in there and don’t take off those boxing gloves. Consult with those CC physicians “very” familiar with this disease and based on their suggestions and until a cure can be found prepare to treat it as a chronic disease. (This is how I like to look at your Mom’s situation.)
A tidal wave of support is coming your way,
All my best wishes,
MarionHi,Peggy,
I did look over your husband’s messages entries a bit.
58 year old,stage IV ICC started 3 years ago;resection 70% of the liver;chemo 5FU for 17 cycles before allergy occur.took a chemo break change to Gemzar/cisplatin and later with Avastin add to the regimen;bleeding occur, off treatment,restarted chemo;8/2011 and October scan are OK with no change (stable) and Dr. Wong recommended to use oral Xeloda.The concern that I have for your husband is below.
If possible, please mention to Dr. Wong your husband may be allergic to IV 5FU as you indicated in one of your message;and Xeloda is a prodrug of 5FU.meaning that after taking the Xeloda,it will change(metabolized) to 5FU inside the body to destroy the DNA inside the cholangiocarcinoma cancer cells.Sometimes the allergic reaction of IV 5FU may be just because of the IV infusion of the 5FU and may not be the actual allergy of 5FU the drug itself. But if any allergic reaction like hives ,severe itching,shortness of breath(SOB),sensation of throat closing,abdominal cramping and fainting,you should consult doctor before starting of Xeloda.Even if not,it still a good idea to mention to Dr.Wong about the allergic situation to him for safety concern. I hope you will agree with my concern for your husband.
God bless.Marion-
We have not officially been told this is bone metastasis as of yet. One radiologist thought he might have seen something on her CT in September at the level of T6, but her oncologist was a little ” unsure” of that, and was choosing to watch this spot for now. The rib disease we found, we are unsure of how long that has been there. It is possible it has always been there, as my mom has had some back pain for years, or it’s possible it is due to the cancer. We wait to hear from her oncologist today, and see what they might recommend next. We hope to head back to Mayo, run some additional tests and begin some treatment. I will be asking about radiation, as this is something I have been researching as well.
Thank you for your advice and kind words. I admit that some days it is tough to stay strong and I just want to cry. But even when I am feeling a little down, my mom reminds me that she isn’t done fighting yet, and so neither are we. I trust in God that he knows what is best and he is watching out for us the best he can. I believe he will find a way to help us all through this situation whatever the outcome might be. And my faith in my mother’s doctors remains strong, as they have been two of the biggest fighters in her corner. We trust they all know what is best for my mom. Thanks again
whittrockj…..I am sorry to hear of the latest development with your Mom. Several of our members had bone metastases and some have been successfully treated with radiation. Is this something that can be entertained?
Please, stay strong.
All my best wishes,
MarionThank you all so much for the kind words. We are remaining as positive as we can and keep pushing forward. Mom is experiencing a lot of back pain, which we discovered is from some degenerative rib disease ( possibly from the cancer). She is in the hospital again today after being home for a few days. Getting some stronger pain meds and trying to get things back on track. We are seeing an increase in her alk phos however as time goes on. Hoping we can figure out something to get her back on track and into a clinical trial.
Thank you all for your kind words and support! It truthfully helps us get through some difficult days.
Cathy- thank you for your post… and Congrats on being a survivor. We will remain positive and hope that a clinical trial will also help our mom being a CC survivor. Can I ask..what clinical trial seemed to work for you?
Peggy- Best of luck to you on your journey with your husband. This is the ultimate roller coaster ride, and you have just begun. Stay strong, and try to stay positive..attitude is half of the battle, and I believe it is positive attitude that has gotten us this far with my Mom so far. We will remain positive and continue to fight until we have no fight left. Please keep us posted on your husbands care. And best of luck to you and your family.
Peggy, this is good news. GO to our listings of Hospitals that you will find on the Home Page. I am not sure but the name Wang is familiar to me, in a good way.
See if Georgetown is listed or even Dr. Wang. It’s true every time a door is opened for us it’s like a big YES! Or go to our search engine and type in Wang and perhaps it will come up easier that way. Love an ONC who offers other help! Best of luck and I know you will keep us posted!Hi Lainy and Gavin,
We just got back from the oncologist’s office and he is trying to get us an appointment with a Dr. Jimmy Wang at Georgetown. He said there had been no change on the scans but he is concerned about John staying on the gem/cis/avastin because of the effects it has on the kidneys. John had his right one removed when he had his surgery. Also, because his platelets drop so low, he feels that he needs to switch to something else. He mentioned Xeloda (I’ve seen that referred to on this site). I guess I’ve got my research cut out for me–trying to find out about Dr. Wang and Xeloda. The oncologist did say he didn’t want to do anything else until we have met with Dr. Wang, although he did schedule him to get Avastin on Monday. At least I feel better knowing that now we are finally going to meet with someone who has more experience with CC. Thanks to you both for your positive thoughts. PeggyP
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