when to start freaking out

Joy · 05-14-2007, 12:28 PM

Hi ladies, I still don't know the status of filling the tykerb and xeloda and co-pay assistance and all of that. It has been 2 1/2 weeks since I had any kind of treatment. Should I worry that the cancer is going to just take over and it will be too late to start the drugs? Since Friday night I've had a lot of abdominal pain and tenderness and it worries me. I'm to get a CT today to check this stuff out-just waiting on a call with the time. I tried following up with the second specialty pharmacy that called me Friday-not sure why or how that happened. But I got transferred around and was unable to follow up.

Well just curious about your thoughts.

hutchibk · 05-14-2007, 12:56 PM

Dang it Joy. Sorry you are stuck in the quagmire. Upon reading through the Tykerb info, it sounds like Tykerbcares is set up to help you receive it if your insurance does not cover all of it... hmmmmm.

I was off of any kind of treatment for about 7 weeks. I understand how you feel. I was so worried that there was the eqivalent of an antfarm living in my body, just crawling around at will and setting up camp wherever it pleased. However, I seriously don't think that too much harm can come from two weeks. I mean people take chemo breaks all of the time. I am confident that you are fine!

Keep us posted!

tricia keegan · 05-14-2007, 12:59 PM

Joy

I can't help with advice unfortunatly but just wanted you to know I'm wishing the best for you and hope they get this tx moving asap if only
to help your peace of mind.

Hugs

rentrac · 05-14-2007, 01:16 PM

Hi Joy,

Just found this site last night, but I have gone through several multiweek periods without treatment. Those "bad boy" cells can hang out quite a while without causing a lot more trouble that the chemo will deal with later. I found that when I have these breaks, I tend to feel better, so I use it as a time to load up on ammunition: increase my activity to build up muscles, stamina, etc and to eat as healthily as I can, and to get out and do very non-cancer stuff for a little mental vacation if at all possible. Bur from your note, it sounds you're feeling not so great for the moment. Try to relax if at all possible, such as deep breathing or meditation type techniques so the rest of your body doesn't get tense and make you feel worse. And don't forget, your brain is very in sync with your body's stress signals from all over, so destressing one part can help relax the rest and give you a chance to step back and re-evaluate your situation. MEanwhile, I started Tykerb 2 weeks ago. It's interesting. I'll keep my positive thoughts going your way that the insurance/paperwork/dollar stuff gets worked out quickly for you.
Rentrac

Andi · 05-14-2007, 01:36 PM

Joy - I'm so sorry to hear you are still getting the run around. I can certainly understand your nervousness about not being on anything at the moment. What are your onc's feelings about this? Is your copay for the Xeloda high, too, or could you maybe do as some of the others on this site and start the Xeloda now and the Tykerb when you can get things straightened out? Also, do you think your stomach issues could be nerves from the stress of all of this? I wish there was something I could do to get the ball rolling on the Tykerb for you. You are in my thoughts and prayers that your CT will come back with good results and you will get your Tykerb thing straighted out soon.

Lolly · 05-14-2007, 04:28 PM

Joy, I know your level of anxiety right now as I went through the same thing recently in my transition from Herceptin to Tykerb. Herceptin, even with a new chemo(Gemzar) added, wasn't keeping the nodes in check and I could feel them growing

My onc was also in transition to a new center so until he was established I was being seen by one of his former partners who was reluctant to "rock the boat" too much.

Long story short I was on an ineffectual combo for 8 weeks, then nothing for 2 weeks when my onc stopped my treatment and ordered scans. I was fairly unnerved when I finally started weekly Abraxane. I got 2 treatments under my belt and was feeling some improvement in symptoms when we added Tykerb. After just 12 days on the combo I can report that the enlarged nodes are definitely shrinking. Big sigh of relief.

You have my sympathy for sure, but I just want to assure you that it will probably be ok in the long run, because it’s clear to me from my experience and from what others have reported when a new treatment is working, the right combo at the right time can have a very dramatic effect on this disease.

Hang in there, keep fighting for Tykerb, and keep us posted…
<3 Lolly