Staring a new clinical trial..HELP (Page 2 of 2)

Thank 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.

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

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,
Marion

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 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