Help

Angela · 06-05-2008, 06:43 PM

I ended up in the ER in really bad pain. They determined that my lung mets are growing. The also did additional scans and now I have mets in my 9th right rib and my right hip. They have put me on Navelbin and Tykerb. I got the Navelbin on aThursday, took the 1st of tykerb on Friday, took tykerb on Saturday and had a reation. It felt like someone was sticking 1000s of needles in my mouth and throat. We stopped everything until I got better. Last week we did 1/2 dose of Navelbin and I did fine on it. So this past Tuesday we increased to 3/4 of a dose and on Wednesday I started back on Tykerb but I only took 1 pill (we are going to try and built up to the full dose slowly). I took another tykerb pill today and I have started having tingling in my mouth and throat. Has anyone ever had tingling in their mouth or throat with either of these drugs?

What happens if I can't take Tykerb? That is the drug to take the place of Herceptin which the dr thinks is no longer working.

CindyE · 06-05-2008, 07:02 PM

Angela,
I'm so sorry to hear about your situation. I'm not Tykerb so I don't know about the reactions. I want you to know that I am thinking good thoughts for you and sending prayers up for your treatment to go well. Take care,

Cindy

hutchibk · 06-05-2008, 09:09 PM

Hi Angela - I have been on Tykerb with Xeloda for a year. I have had little to no side effect. I wonder if it isn't a reaction to the Navalbine/Tykerb combo. Is there a particular reason that your onc is not doing Tykerb w/ Xeloda first, as that is the initial combo that has been approved for treating mets when you switch to Tykerb... Also, have you talked with him about Zometa to strengthen your bones. Last week from the ASCO Conference, we got great reassurance of the potential of Zometa to help protect and possibly treat bone mets. Let us know how you are doing.

doh2pa · 06-06-2008, 08:15 AM

Hi Angela,

I took Tykerb for 8 months and did not have the specific mouth issues you have but did have lots of GI issues the last 4 months I was on it. Don't despair, please. I know it seems like herceptin stopped working for you, but it may work better in combo with the Navilbene. I've had an "on again, off again" relationship with Herceptin the last few years. It seems like alone it doesn't hold my disease at bay, but I did take it along with Navilbene and got a very good response. So if you can't tolerate Tykerb there are other options and combos to try.

06-06-2008, 07:12 PM

Sounds like an allergic reaction. My son has food allergies, same symptoms, and in general your allergic reactions will only become worse.

So I think either they can give you steroids to cope with the allergic reaction or try to find another combo. Can they do H with navelbine?

Good luck, Bev

jones7676 · 06-07-2008, 12:00 PM

I had quite a few "oral" issues with Tykerb (although not the type you have described). Perhaps it does not agree with you. But there are many approaches they can use (benedryl etc.) if they really feel it is the right choice. I recently switched back to Herceptin - as they are not sure if the Tykerb quit working, if the Herceptin ever did quit working for sure etc. We are often exposed to "cutting edge drugs" and they just do not seem to have all the answers. I wish I had a definite one for you....perhaps your doc could consult with some physcians from other areas to see if they ran into this. Also, I do want to say that Tykerb was harder on me the 1st two months and then my body seemed to adjust to it for quite a while. I never won the frequent bouts with loose stools though. That is why I opted to switch back to Herceptin.

I wish you luck and I hope they get answers for you soon!