Tykerb Cares Program
 

Apparently everyone who is being prescribed Tykerb will be getting a call from Tykerb Cares program.

I had actually called in for information on the reported rashes, and ended up having my phone call yesterday.

It ended up taking an hour and a half, and was given no additional information than what i already have. They would not even give me any information or suggestions on how to help heal the rash. They just directed me to ask my onc, which I had already done, but I was curious if there was anything in particular that had worked well in the trials. They would not share any information of that type at all.

For me, this was a waste of time and not helpful at all....They are probably spending alot of money on these people being asked to call all the Tykerb users, and in my opinion, those resources would be better spent in some other area.

Esther, what type of rashes are you having and is this a side effect of Tykerb? I'm going to start on it soon and would like to know what to expect so I don't freak. Are they itchy and where on your body..sherryg683

Actually that was the one useful piece of information I got from the Tykerb Cares nurse. She said the rash was the most frequently mentioned side effect since Tykerb was released in mid March.

The rash typically appears on the arms or sometimes the face, is red, and has little pimple or blister like eruptions. It itches at first.

That sounds lovely, I will probably end up with a rash that looks like another out break of the shingles that I am suffering so much with now and confuse my poor doctors even more. .lol..sherry

Esther, I don't know if this will help but whenever I get rashes or skin irritations, I bath in epson salt water, it helped with my shingle outbreak. I get the half gallon size salt at the drug store..it would be worth a try..sherryg683

Sherry and Esther - you can also try aloe gel/cream on the rash as that may help as well. I will be starting both next week so we'll see how it goes. I swear by vaseline petroleum jelly on my feet now so maybe that's another way to go, put socks on and do your hands at night with cotton gloves - worth a try.
Bailey

Anyone, Please Comment/share Info With Me
 

Today, I could have started tykerb+herceptin, due to progression of disease,( it has grown a little for the last 4 months and CA2729 reading is up to 58 from 44), normal CBC, heart, liver, brain etc.; but I opted to go back to navelbine+herceptin since this combo worked really well for me. I have been reading everyone postings about Tykerb and the side effects; based on that, (and my gut feelings) decided to postpone its use.

I'd like to add that I have been pretty lucky since recurrence in 2003, with no major problems, or annoying side effects. It will be four years in August...

My onc and I decided that if this does not work, then we may switch to tykerb and herceptin, not xeloda.

Esther: I took your posting regarding tykerb+herceptin use post-clinical trialsto my oncologist; he will be doing some homework regarding this combo, since he said he's never heard of this combination. His opinion his that Tykerb should do the job that Herceptin is currently doing for us. Basically he' s saying Tykerb+Xeloda would be a better and effective combo w/o Herceptin. Thank you for sharing the info with us.

Any toughts/comments will be very much appreciated.

Adriana - although I have not started the ty/xel. combo I am still doing it. Everything I"ve read about it is so positive and I know the onc. can adjust your xeloda so that the side effects aren't too bad. I was on Herceptin and now just the ty/xel. starting next week - I"ll deal with whatever I have to I guess and talk to my onc.

Adriana; My onc started me on Herceptin/Navelbine in 2001 when I first recurred. Like you, this combo was very good for me. I've had a total of three recurrences, each time treated by adding Navelbine, for 6 months, to my maintenance Herceptin. However, each response was less "vigorous" and by the third recurrence I was "only" stable on the combo but we strung it out as long as possible before finally saying goodby to Navelbine last year when I started Xeloda. I think if you have a chance of getting another run with Navelbine, in my experience this tactic has worked well so far.
Good luck, and keep us posted.

<3 Lolly

Lolly (or anyone plse.) - I am starting xeloda and tykerb next Wed. Did you loose your hair with xeloda? They tell me there is a possibility one time when I called the company and the next time they said there were no reported hair loss stories.
I'd appreciate your comments.
Thanks
B

Bailey, hi. No, I didn't lose my hair with Xeloda, although it seemed it thinned a bit. However, it remained healthy enough that I carried on with getting highlights, so hope your's does as well! I've known several others at my treatment center who also didn't lose their hair on Xeloda. Good luck!

<3 Lolly

Lolly - thank you so much for that. My Onc said I MAY loose some but not alot - I haven't heard of anyone else even mentioning it thinned a bit so not sure who else that has happened to. I'll keep you all posted.

B

Esther,

I just posted on another board but I have having the same rash on my face. Have you found anything that worked yet? My cheeks are all splotchy and I have little blisters that I thought were pimples. This is about my 7th day on Tykerb. Has your rash gotten better or worse with more days of Tykerb? Look forward to hearing from you.

Pam

I think that is from the xeloda but not sure - goes along with the hand and foot thing. Try a good make of Vitamin C Cream - try Jan Marini C'esta Cream - you will have to find an aesthetician in your area and get it from her - it's expensive but you only need to use a bit a.m. and pm - if you use moisturizer you would use the Vit C cream first plus it's an amazing product anyway for the skin. I'm a Lic. Aestetician and have been using it and selling it for years and it was the one product that really kept my skin awesome even through all my chemo. Although I have not started the meds yet I am sure it will work - make take time to settle it down but worth the try - it's a fabulous product. We recommend it for our patients with rosacea as well and it's great.

Let me know how it goes.
B

The rash and pimples get better with time and are supposed to go away within 4-6 weeks.

I used an Olay face cleanser, a clay mask, and used the infrared sauna to cleanse pores. Any kind of acne cream used overnight helps to finish drawing it out and drying quicker.

I'm down just an occasional pimple now, hopefully that will be it for me.

good to know; after less than a week my face looks like "oatmeal and cream"! I've got a medicated clay mask from my dermatogist, that's helping somewhat. I guess time will do the rest.

I'm glad to know, too, that the rash can abate over time. I am also grateful for everyone's tip and hints on how to deal with the breakouts. As I mentioned before, I battled acne for YEARS and only in the last 5 or so years have I had the skin I always wanted. I also have hair I like again. And while I'll admit a certain amount of vanity, it is also a matter of looking HEALTHY. It does so much for the outlook when on the outside you look healthy. I was told today at school by a friend that I looked 'radiant' for some reason. And as I posted on the main board, I think it is being off herceptin for the first time in 41/2 years. I'm pretty sure xeloda and tykerb will take care of that radiance though.


Most importantly I want this treatment to beat the snot out of the cancer, but I can't help but hope that I'll keep my hair and that my skin can eventually look the way it does now.

ADRIANA - DO YOU GET EV 6 mnth ECHOs?
 

Been on Herceptin since '98. Got ev 6 mnth ECHOs to check EF (ejection fraction). Am doing really well so Pegram suggested at this point (as of Feb '06) I could go for ANNUAL Echo cardiograms. Taking Arginine 350 especially strengthens the heart. + I have started that along w/Co Enzyme Q10 -- 100 and B6- 50 , E400, Magnesium, Lysine and Phyto Formula (1 scoop in OJ), Flaxseed Oil 1000 + Omega 3,6&9, Grapeseed Extract 150-- all to boost heart function. I take C 1000 w/bioflavonoids + Green Tea capsules (or drink 3 cups a day to shrink tumors). Calcium of course. w/D400 _ D3 - 1000.Lysine 500. Magnesium 200. All this from NY Columbia Presb oncol/hematol who specializes in nutrition and supplements. An oncological expert in this field is a rare find. He is in to meditation, mind/body connection, holistic approach WITH traditional meds. TO ENHANCE benefits -- body, mind and SOUL. ADJUNCTIVE/IN ADDITION TO conventional, cutting edge approach.

Someone said Herceptin AND Tykerb????????????????????????? My understanding was if Herceptin does NOT work for you (and thank God it does for me -- Tykerb is the answer for those people). I don't understand doing both together. Went to conference on this last wk. That's how Dr. Charles Vogel explained the 2 drugs. As long as Herceptin is working, stay w/it, he says. Otherwise, you have the option of switching to Tykerb.

ALSO -- I READ A POST THAT HERCEPTIN ADDS WEIGHT. Well, that explains A LOT!! What's your experience? Please give me input on this. Been on Herceptin since '98 and NED. STABLE. I say THANK YOU GOD every single day without fail for this. But the added weight is interesting to me. More input please.

Sending loving happy energy to my soul sisters all, ANDI

Andrea - I was on Herceptin and did very well on it. I just started Tykerb and Xeloda and I hate it - first, not sure about the Tykerb and Herceptin as I thought the same as you but I'm hoping my Dr. just takes me off the xeloda - it has given me the worst headaches I've ever had although right now I am currently on my 7 day off of xeloda and no headaches. Also major diarhea which is awful, heartburn which I've finally gotten under control with Nexium or Prilosec and just doing research on the internet to alkalize my body, I am only getting the tingly in my feet from the hand and foot syndrome and it's sore - I really do not like these mixtures of pills. I was told that insurance would not cover Tykerb alone but only with the xeloda which I find strange - told this by my Onc. so if anyone has info. on that plse. let me know. I got a call from the Tykerb folks and she tells me I can do Tykerb alone and insurance will pay for it so I see my Onc next Wed. 6th and will discuss. I'm not happy on the mix at all - the headaches are major migraines and I can't live like that.
Any help from anyone would be appreciated.
Thanks
Bailey

Bailey

I am sorry you are having side effects. I too had bad side effects at first but after few adjustments I am normal again. Don't give up your oncologist can make some adjustments in the dosage.

It sounds like you may need you Xeloda dose lowered. And there is always the possibility of a change the schedule of Xeloda treatment; from 2 weeks on 1 week off to 1 week on 1 week off. I have found the 1 week on 1 week off schedule is great I have so much more energy.

Also consider taking your Tykerb at bedtime, this helps with the side effects. Taking imodium daily is part of my routine, even a prescription of Lomotil can help. Eating a diet that is for bulking up can help too.
Ask you oncologist for a diet to help avoid side effects.

I hope your headaches subside; dehydration can cause many side effects and problems. I use an oral electrolyte maintenance solution like the Pedialyte drink to help. I have learned that low potassium also causes problems. Make sure your blood is tested for potassium levels next time you see the oncologist.

I wish you the best.
Hugs,