iowagirl

Oh golly…wait until you all see this picture. It looks posed and photoshoped, but I know it isn’t. It is beyond inspiring …first the hair raised on the back of my neck and then shivers…and then tears.

Lucia, There are no apologies needed for your English. You are doing quite well with it. I am glad to hear that you were able to find a clinica trial for a target therapy and hope that yoiur mother’s biopsy results will qualify her for the trial. I don’t know a much about trials and what the words mean, so I can’t speak to that. Prayers that your mom gets the answers you all want and need.

Julie T.

Lucia,

I can’t offer much for info on your question about trials, but I just wanted to also welcome you here to the CC Foundation boards. I’m sure others will be along to post comments or help. Not everyone is always on the boards all the time, and especially it seems as weekends near.

Julie T.

Gavin…you are a hoot!!!

Serena,
First, the chemo itself does not hurt going in. That part is actually anti-climatic compared to what our minds can conjure up.
They’ll first check her blood levels, then she’ll meet with the oncologist who will examine her and ask a bunch of questiong and if she has any questions. Then, they get the hydration bags going first….and then the chemo. It sounds like they may be giving her some of the drugs orally, that I had actually put in iv bags that I got before each infusion…the steroids and emend esp. I don’t know if it matters much one way or the other. If she doesn’t have a chemo port, then they will have to start an IV in her arm to put in the fluids and chemo. The port is supposed to make access faster and easier…..but also saves the veins in her arms if she has one…because the chemo is hard on the smaller arm veins and can make them unusable after a while.
Make sure that she brings along something to keep busy, but be prepared that she may want to sleep for part or all of the infusion. Sometimes, I was wide awake…and other times, I wass out like a light.
A prescription for Atavan…filled and ready to use is a good idea if the onc will prescribe it beFORE she needs it. Get some ginger ale (use it warm and flat….open the can or bottle and allow it to defizz and it will be better on her stomach).
The first round of two infusions probably won’t cause too much problem with queasiness /nausea. The queasiness usally started in the early rounds….about 3 days or do after getting the day one chemo….of Gem/Cis combined. After that, I had quesiness every day in the morning after getting up….maybe about 15 min after I got up…but that is so variable from one person to the next, that she is going to have to wait to see what her body does . I didn’t find it particularly disturbing….but it just was something I knew would happen….and then in a couple min it was over, usually for the day. But some days I got queasy in the afternoon….(no vomiting or dry heaves) and again before bed (dry heaves). I never really knew when or what….but just expected the unexpected. The Atavan, which also helps with anxiety, reduces the queasiness and was good to take for times in the middle of the day.
My first oncologist also gave me a script for a suppository for nausea, in case it got too bad to even get down a pill. I filled it….but never used it….and ithe bottle is still in my refrig. It was good to know I had it just in case…and it was cheap insurance.
Have some snacks…..anything is fine…..and have her plan to drink while she’s getting the chemo to help flush out the kidneys faster. I took my own snacks sometimes….but the chemo center we used had sandwiches, fruit, chips…just about anything we wanted. That varies…so the first time, you might put in some snacks that she esp likes…..even if she doesn’t end up eating any of them. Peanut butter and ritz crackers are esp good….kind of “stick ” to you….and also help with nausea at other times.

Kelli, et al

The meds under the tongue idea was from our own Kris V, who gave me the idea when I was having queasiness from chemo …and it gave faster relief that way. I give all credit to her…it helped me through quite a few circumstances when I wasn’t able to drink anything to wash down a pill.

It’s good to hear that Vickie is doing bretter today….but watch very carefully. If this happens again, go to the ER and get her checked out no matter how much she protests. And, get the doctor to prescribe a suppository for nausea, just in case. My onc prescribed one to “keep around” just in case I would need it…and wouldn’t have to wait for phone calls or unneeded office visit wait time and a trip to the pharmacy under less than ideal circumstances. I never used it….and it’s still sitting in my “stash”, but it felt good to know it was there for a backup,.

Here’s hoping you can continue your vacation in the mountains……without further interruptions.
Hi Vickie!!!! Big hugs!

Julie T.

Dang it Duke…..you keep using up the letters of the alphabet. But, you can go to lower case, if you run out of upper case. Plan D and E sounds excellent. I am soooo glad to hear that new opinion of your scan compared to the last one. It does make a HUGE difference who is reading the scans…and the more experience the better. (When I was being diagnosed….the radiologists and other doctors wrung their hands….not being able to figure out what the tumor was….and even initially at Mayo, one of the two oncologists…the “Fellow” in oncology I saw first, did not draw any conclusions. The oncologist who was mentoring him, (obviously a lot more experience in oncology) said it looked to be cholangiocarcinoma. Then, the surgeon, who only operates on livers and pancreases, said, when she saw the scan, “I’ve seen this before…it’s CC.” It truly makes a difference….and experience means everything.

What is the LEEO11 Trial?

Happy Dance?…..Oh man…..good thing there is no video here….
Good vibes being sent your way.

Julie T.

Kelli,

Hi….Julie here…your mom and I have been emailing privately off and on.

If you haven’t taken her to a hospital yet….and if the dry heaving hasn’t abated,…….have her put one of the anti-nausea pills (I’m hoping she did get some …Atavan?)….and have her put it under her tongue to dissolve there….so it can get into her system faster and before hitting the stomach so much. One of the other members on the boards gave that hint to me when I was having a lot of nausea and could get to water always to take a pill.

That’s only a temporary solution (if she has the pills and IF they work for this). I agree with Marion….that your mom should get to a hospital to be checked out. I realize you’re in a remote area….but there should be somewhere the locals go. If nothing else…call 911 or the sheriff’s office and get their advice on where to go and possibly their help in getting there.

This could be nothing more than the totally unglamourous “stomach flu” or something related to the CC. At the very least, they can give her a suppository for nausea to try to control it or possibly IV medication to keep her hydrated as well, while they assess the situation and observe her.

Give your mom my love love and tell her I’m thinking of her and sending prayers.
Julie T.