middlesister1

Third what Duke said except regarding the port. Our regret in this is that we didn’t get Mom the port right away. She never had good veins and the Gem/Cis will make the veins more brittle as treatments go on (ONC says the damage is permanent) We thought for only 3 cylces, why bother. However, there are blood tests and IVs needed during scans as well. But time we went for the SIRT, they could not get a vein after trying for an hour and her doctor ended up doing the port w/o the sedation of the IV. Some may have good veins, but all of her infusion nurses said that the first thing they would do if diagnosed, would be to have a port inserted. I know there is always infection risk and need for flushing if unused, but I wish we had saved my mother the apprehension and pain she went through finding veins for the first few months.

Melinda,

What a tremendous milestone- Congratulations! And I agree that in the not too distant future, we will see your treatment protocol curing others as well, but for now thankful that it has helped you and your story gives hope to many others.

Catherine

Hi,

Mom just started on capecitabine (Xeloda) about 2 weeks ago, but she is doing it without the oxaliplatin. Before she started, I used the search function to look for Xeloda and one thing I found was that it is helpful to cream hands and feet each night with Eucerin to avoid side effects that some get. So far her hands and feet are doing well- just fatigued so far.

Good luck,

Catherine

Dear Kris,

Thank you for sharing with us. I’m sorry that you and your family had to go through this, but your story is a tribute to the loving family your mother raised and belonged to. Your contribution will also help others who may have doubts regarding if they should visit other doctors.

We will be thinking of you and hope all goes with your Dad as well. Even if not related to a CC topic, you can always post to let us know how you and the family are doing.

Take care,
Catherine

Hi Joe,
My mother was diagnosed 13 months ago and after starting surgery, they determined her ICC was inoperable and closed her back up.
Many when first diagnosed and deemed inoperable are given grim survival statistics. We were also told that chemo only adds on average 3 months. However, we were not told early on about other targeted approaches and how many folks out there who are alive much longer with this disease. Although we have only gone to one hospital, we have a team that is comprised of a surgeon, oncologist, radiation oncologist and interventional radiologist.

We have been through chemo and will be going for a second SIRT (radioactive spheres) treatment in a few weeks. Although it sounds like a lot, we have had months of treatment-free time and she is still feeling fine. This next SIRT treatment is an agressive attempt to go after the tumor while she is well.

Although this is a horrible cancer, there is hope.

Good luck,
Catherine

Lainy-
Thank you for the complement on the Avatar, but actually it’s Mom’s picture rather than mine. I try to avoid having pictures taken. Mom is much more photogenic than I am

Take care,
Catherine

Duke- Thinking of you today; hope all goes smoothly.
Catherine