Tykerb/Xeloda Not Working Anymore :(

[WayTooYoung]

Hi folks,

I just found out today that I have progressed on tykerb/xeloda. Ct Scan shows I have 5 lesions on my lungs and possibly one in the liver. I jave fluid build up in my lungs which is resulting in my shortness of breath. Dr said my only option is Herceptin/Taxol now...but I will lose my hair again.

I am devastated again. Does anyone have any other possible options to recommend? I am in Canada...the downside, bc treatment won't be firstline, I no longer qualify for Herceptin coverage. If my health plan doesnt cover it, I am not sure how I will pay for it.

Has anyone else tried taxol/herceptin combo? What are some side effects to expect?

I'm feeling bleak...and helpless...

[Lucy]

I responded to your other post about this but I'll say it here too . . . Taxol typically is tolerated well. I did have some adverse side effects but they weren't typical of most. Yes, you will lose your hair (my eyebrows had held out until I started Taxol). I got neuropathy in my hands and feet (I was told about 75% of patients do). My toenails lifted and changed colors. Those are all pretty typical from my understanding and while annoying, are tolerable.

If you're treating HER2 cancer I would think herceptin would still be covered under your insurance. Has someone told you it wouldn't be? Can you call an confirm? What about perjeta? I would fight for the treatment you need because it's not elective - it's necessary!

Good luck and keep us posted.

Sending cyber hugs

[WayTooYoung]

I am not sure how my Dr explained it yesterday. I tried calling him to confirm but am awaiting for a call back. They are putting me on a patient assistance program...so I guess maybe its not covered for people with stage 4? No idea...

[broccoli]

OHIP covers Herceptin/Perjeta/Taxol if your previous treatment worked for 6 months or longer. (https://www.cancercare.on.ca/CCO_DrugFormulary/Pages/DfPdfContent.aspx?itemId=290630) You are likely in luck.

Are you at PMH? There are also more HER2 targeted drug studies being run by my onc there.

[WayTooYoung]

Hi Broccoli! Thank you for the info. I spoke to my Dr on Friday and he said the government only covers herceptin for 2 lines (and I have used them all). But, according to the information you sent me, there may be just a glimmer of hope for me! I will print it up and take it to my Dr.

I am at Sunnybrooke. Did you know there is a new clinical trial at PMH that is exploring vaccines to fight cancer? It's currently in phase 1...sounds very promising.

[KeriK]

Have you asked your Dr about Perjetta?
I have no experience with it but everyone I know on it calls it their miracle!
And reach out to Genentech about compassionate use with either herceptin or Perjeta.
Best of luck, stay positive, and pray a lot!!!

Keri

PS. Vit b 6 150 mg and L Carotine helped relieve my neuropathy

[WayTooYoung]

Hi Kerry,

Not sure when this message was posted but I never saw it until now. I was on a tdm1 clinical trial that included a blind study for Perjeta. Since there was a possibility I may have already had it, the Canadian govt won't cover it. I am currently on taxol/herceptin combo.

N

[broccoli]

@waytooyoung - did you check with your study coordinator to see if they could reveal whether you got the placebo or perjeta?

Laura

[WayTooYoung]

Hi Brocoli!

Yes, my Onc requested from La Roche to unblind the study to see if I had received perjeta but they wouldn't.