Tykerb

CypressCynthia said:

I will be on the Pink Bus

I will be on the Pink Bus with you going to the PET.  Bringing cafe au lait and beignets and big hugs.  Praying it will all be good!!!

I don't know about Tykerb.  I am on herceptin/perjeta for life (or until it stops working) for Stage 4 her2 +.  My onc did mention he would try another drug if these fail, but I forgot to ask him which drug.  In the meantime, my last PET was good.

Hang in there!!!  We are all with you!!!!

 

Just checking in

I am just now getting back to this site, been away getting scans and tests etc, you know the drill...  I do pray that you are doing well.  My insurance denied the PET scan, so my oco ordered CT scan and bone scan, all looks good for now, he did say that I have to be really careful what I eat, I have a fatty liver or something like that, and he is not overly concerned as of yet, but mentioned something about some lymph nodes at the back of my stomach area.

i am leaving it in God's hands right now... I know anything can change at any moment.

As far as my oco putting me on tykerb, he hasn't mentioned anymore about it, the last time he told me about it, he said at the time, the FDA/government isn't allowing people with my stage of the cancer to be on it right now.  And he is upset with their decision on that.

He did mention to me a long time ago about putting me on Perjeta, but hasn't brought that up to me anymore...

its just not knowing that is so hard sometimes. 

I do think the government has too much control on our health, my nurse told me that people on Medicare, are allowed only 3 PET scans in a lifetime, and she went on to say that its just a matter of time before the insurance companies follow along. 

That is so sad, look at all of us out there with stage 3 and 4 cancer, and the govenment and insurance companies are limiting us on necessary scans.

I just hope we all hang in, and keep praying for one another.  Keep a positive attitude and our Lord close to your heart.

 

Have a Blessed Day,

Linda (littleangel65)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

1surfermom said:

Tykerb (lapatinib)

I took Tykerb for about 4 months as part of a clinical trial. I really did not have any side effects with it. The pills are pretty huge ( kind of like the size of a prenatal vitamin) so they were some times hard to swallow. I remember that it had to be taken on an empty stomach, to avoid nausea I took it at about 3 in the afternoon. After I completed the trial I did experience thinning of the skin on my finger tips though and as a result I'm hard to fingerprint.  I hope this helps. Love Surf

Hello

Just got back from my yearly exam, so far so good, doctor did mention I have a fatty liver, so I am very careful to cut back alot on food that I take in to try an correct that issue.

He hasn't mentioned my taking the tykerb, he did say something that he get it for me at the momet bc the FDA/government won''t allow him to prescrib it to me at this time.

But he did feel strongly about my taking it, he said it could create a barrier, to keep the cancer to travel to my brain, which with my type of cancer it most likely will go to the brain or the liver, if it was to spread.

 

So, I am leaving it in God's hands, he knows what is in my future, no matter what pills are out there.  He has taken care of me this far, so why give up on my faith, right?

I appreicate you getting back with me on the side effects of Tykerb, I don't think my oco has totally given up on this issue as of yet, he is very intelligent, and he will figure out something if it is meant to be.

 

Hope all is going well with you.

How long have you been  in remission?

keep in touch, hope you have a Blessed Day!!!

littleangel65 (Linda)