Yeah Tykerb started

[H&B]

Hi All

I wanted to quickly post and say that my lovely wife (38yrs) who has been fighting for the last 6 mths to get access to Tykerb finally recieved her first dose this week. She has been on Herceptin for last 2 years. has mets to bone & lungs, plueral effusion 2 months ago. Couple of questions if anyone can offer some advice.

Seems that most of you that are on Tykerb have had the side effects pass after a few weeks. She is very tired and also has diahrrea. Have you adjusted the number of tablets depending on how you were feeling?

Oxygen, she has been very short of breath due to fluid build up in lung after a horrific plueral tap she is not keen for another just yet. Has anyone reversed there lung mets and or fluid build up with tykerb?

Thank you all for being wonderful support to each other and I hope we can enjoy some wonderful success on Tykerb also.

Thanks

Harald

[Esther]

Harald, when I started at the initial dose of 5 Tykerb pills a day, the fatigue was quite pronounced. After lowering the dose to 3 pills a day, the fatigue was quite minimal.

Just recently we raised the dose to 4 pills a day, and the fatigue has once again increased. So for me, the fatigue seems to definitely be dose related. Since I got my great results while on just 3 pills a day, I think I will be discussing with my onc reducing back to that level.

She should discuss it with her onc and see if a dose reduction might make sense for her.

[Lala]

Harald
I have been on Xeloda and Tykerb since March. I experienced the bad side effects of Diarrhea and had to have both my doses lowered.
One has to be careful as diarrhea can deplete the potassium and sodium needed in the body. It is very important to replace these nutrients either in an oral electrolyte maintenance drink or by consuming food rich in potassium. Drinking at least 8 glasses of water daily is a must.

My dose of Tykerb was reduced to 1000mg that is 4 pills.
I take my Tykerb nightly before I go to sleep. I found this is a best way to avoid the side effects. I also take a few doses of imodium daily (this is an over the counter anti-diarrheal drug). In addition, I found that it is best to eat a diet that bulks you up. Ask the oncologist for a special diet plan to help avoid diarrhea.

On a good note, my recent scans have revealed that I have had a very good response to these drugs. I wish your wife the very best results.

[Shell]

Harald-

I'm glad she has started tykerb - I take 5 pills a day before I go to bed, and am still dealing with the diarhhea issues - I take the immod ad but I don't think it helps much.

We just discovered the mets to the bone (had it to lungs) and I'm in the middle of radiation to my left hip - it already feels better.

I have the shortness of breath, but haven't gone to oxygen yet...I''m on abraxane now, so we'll see what happens.

Good luck with tykerb,

[ellen]

Harald, I just started a trial with avastin and tykerb beginning last Thurday so it is not yet a week. I have had a right pleural effusion since last July. I have been on many chemos and Xeloda and herceptin cleared up the effusion but I had the fluid drained once and then I had pleurodesis which I was told was successful. All was well for about seven months when the fluid returned. Went on doxil with herceptin. It did not work.
Doctor told me to go for the trial. I could barely talk, always coughing but not when sleeping. I can already feel an improvement. I know I am getting better. I do not have any other mets except for the right lung. I take 6 tablets a day because I am not on "chemo" but targeted meds. I have avastin iv every 2 weeks.
So far, I feel ok but it really is too early to really say. I wish your wife great success with tykerb. I have my fingers crossed! Ellen

[H&B]

Thank you for your replies and information, its a wonderful comfort to finally be able to discuss these issues with people who understand and care.

Doctors seem to treat us like numbers sometimes and our friends and family don't seem to understand the intensity of the day to day aspects of dealing with this situation we are all in.

Brony, my wife is seeing the heat in hands and feet now - she doesn't seem to mind at the moment. But last night she had very bad headaches, could that be from the diahrrea?dehydration?

Thanks again for your replies I hope you all continue to have success on your current protocols and that your bodies use this as the catalyst to regain your well being. Harald

[chrisy]

Ellen, I think I am on the same trial as you are, Tykerb + Avastin, but at UCSF. I started at the end of April. Glad to hear you are feeling better so quickly!

Harald, I had only mild side effects on this combo, but unlike others who have responded to this thread, I take the Tykerb in the morning and was afraid to change because for me, the degree of diahrrea (I STILL can't spell that word!) seemed to correspond to the amount of time before I ate. So I think that if I took it in the evening I'd be up all night! I, too, take 6 tabs a day on the trial.

I keep forgetting that these agents can cause fatigue - I need to stop beating myself up about being tired and lazy!

And Harald, it's wonderful hearing you refer to your wife as "lovely"! I hope this treatment works well and quickly for her.

Take care
Chris

[Lolly]

Harald, like Chris I take my Tykerb(5 tabs) in the morning when I first wake up, then go back to bed for an hour. I do have fatigue; I have to pace myself on my "tired days" and not overdo it. I just have moderate diarreah which is controlled by 1-2 doses of Immodium a week. Usually just need one dose, but that may be because I'm also on Abraxane IV which requires IV Zofran for naseau which causes constipation, so it seems the 2 balance each other out!
Glad you and your lovely wife were able to successfully fight for Tykerb, and am keeping my fingers crossed for a good response!

<3 Lolly

[H&B]

Hi all

Just quickly thank you for your responses, My wifes headaches have started to subside and she is seeing some definate reductions in her tumors that she can feel with her fingers. She is delighted and is managing well with the diahrea, hot feet and hands, her main thing is she is so fatigued she is spending most of her day in bed & sleeping,
She has hope and that is the main thing!!we are so thankful its hard to put into words.
May you all continue to have wonderful results on a targeted therapy - the way of the future!!

[hutchibk]

HI Harald - she should not be taking any supplements with folic acid. It can be found in multivitamins and B-complex... it can make the side effects worse, so don't take it! Also, no grapefruit! I find that eating as clean and healthy as possible really mitigates the diarrhea severity. Also, try a B.R.A.T. breakfast everyday... banana, rice, applesauce, toast and tea. It works for me. I only have about 1-2 bad diarrhea days every month so far, and usually when I get lazy dietarily. Also, as mentioned by others here, dosage can be adjusted to mitigate side effects. Hydration can be a cause of headaches and leg cramps.

The hot feet and palms of hands is Hand/Foot syndrome. Take 100 mg of B6 (50m in the AM and 50m in the PM). Don't let it get out of hand. Have her do what she can now to prevent it! Once it takes hold, it's hard to go back.

Best of luck to you and Brony! Australia? I might be there in November!

[doh2pa]

Hi Harald,

Love your picture, by the way.

I wanted to address a question in your original post about reversal of lung mets on this regimen. I am on Tykerb and Xeloda and after only 6 weeks, my scans on Friday showed 3 small lung mets are GONE!!! I greatly hope that your wife will have the same amazing results, sounds like she is well on her way.

Donna