Topic: Options for Stage 4b newly diagnosed CC?

My sister was diagnosed 2 weeks ago with metastatic intrahepatic CC. The doc says to go with standard of care GEMOX. I've read the literature. Isn't there anything better???? She is very symptomatic. Fluid drained from her pleural cavity, short of breath, exhausted, no appetite. Any advice would be greatly appreciated!

2 (edited by PCL1029 Thu, 17 Oct 2013 11:59:15)

Re: Options for Stage 4b newly diagnosed CC?

Hi,
The links below may help

http://www.cholangiocarcinoma.org/punbb … 006#p81006

Gemox is better if patient has kidney issues;but in my opinion if you do not mind the neuropathy ,Gemox is as effective as Gem/cis and better for the kidney.
the link below is about chemotherapy if interested.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Options for Stage 4b newly diagnosed CC?

Sister: I was diagnosed with Stage 4 intrahepatic in Feb2011. Had mets to lymph nodes. I was put on gem/Ox and, even though my system couldn't tolerate more than 6 or 7 cycles, it did a wonderful job of shrinking the tumor and nodes.
If she can tolerate the gem/Ox, it is, in my opinion, one of the best options.
Be careful of cold foods, and nothing raw until her health improves, as Gemzar will lower her blood counts. Get her gloves out as she will probably need them. Except for the neuropathy, the other side effects were tolerable. Nausea that was much better after I vomited for a while. Much easier than fighting it for 3 days. And tiredness.

I often wish my body could have tolerated 1 or 2 more treatments, or that I had lied about the neuropathy for at least 1 more treatment, as I was THIS CLOSE to resection!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Options for Stage 4b newly diagnosed CC?

Sister -
My husband is 5 rounds into GEMOX treatment and doing very well with it. I know our oncologist said they were getting better than average results with it which I took as a good sign (I didn't really ask what average was since I didn't want to know). The cold intolerance is really his worse side effect. Of course we are going into winter so he's having to dress warmer, wear gloves and a hat. He also cannot get into the fridge or freezer so I do that. The other thing is drinking cold fluids - everything has to be room temp or better and don't drink it too fast. He has not had but one bout of nausea because he decided he didn't need his nausea meds since he wasn't having any (typical man, I think)
The only other issue he has with it is terrible night sweats for about 3-4 days after dosing. We just make layers on his side of the bed with towels and sheets so when he sweats he can just take the damp stuff off and move on to something dry. I did put a waterproof pad under his side of mattress cover to keep the bed itself from getting damp.
He says so far its' livable.

Kris I am so sorry that you weren't able to tolerate it especially the nausea. Goes to show how different all of our bodies really are.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Options for Stage 4b newly diagnosed CC?

Thank you! This is very helpful!
She is tired and is throwing up, mostly after eating and I'm not sure if it's the cancer or the chemo that's doing it.
After how many treatments did they do bloods and a follow up scan to see if the Gemox is working? We are all so scared and so worried.

Re: Options for Stage 4b newly diagnosed CC?

Sister -
In our case they do blood work before every dose. So far all the blood work has been great. We are doing a scan next Friday just before round 6 of chemo. I know that everyone's protocol is a little different so I would ask.

As for the nausea we haven't had a lot of that but I can give you some hints that might help. First off - what meds is your sister on? We have Zofran (ondansetron) and Compazine (Prochlorperazine) along with Dexamethasone.
He takes the Zofran and Dex twice a day for two days after chemo then the Compazine every 6 hours. He can take the Zofran up to once more if needed. If she's not already doing something like this then I would talk to the ONC about getting going on something similar. If she's already doing this then it going to be figuring out when she CAN eat and getting as many calories in as you can.

Try waiting 30-60 minutes after taking anti-nausea medications before trying to eat. This gives them a chance to work. Also take them as needed at the very first sign of nausea before she throws up.
Foods that are high carbohydrate such as pastas, bread and potatoes are easily digestible so that empty out of the stomach faster. Red meats often have a heavy metallic taste for people with chemo....if she has that I would avoid them. Chicken seems to go down better. Stay away from heavy spices as bland works better. It sometimes is a matter of trial and error. The biggest hint I can give you though is NOT to eat a favorite food if there is any nausea - it won't be a favorite food if you throw it up.

Something like protein shakes in small sips may help too. We used frozen fruit, a couple of scoops of ice cream, vanilla yogurt, protein powder and then enough milk or Ensure to make it a milkshake. You can make them any size and keep smaller sizes in the freezer. GNC (our local health food store) has a bunch of different flavors of protein powder. We used unflavored that I hid in almost anything from yogurt to cottage cheese even mashed potatoes and soups then we used Cookies and Cream for the shakes.

Hope this helps!

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.