yet another newbie on Tykerb/Xeloda

[Verna]

Hi, I'm a newbie here. Diag. stage IV Nov. 2005, a/c,taxol,radiation,herceptin, zometa. Been on tykerb/xeloda for 6 months.
I've been taking the tykerb when I first wake up in the morning, then xeloda with breakfast and dinner. So far the diareah is tolerable, the only thing I don't like is the acne on my face I get from it. Anyone else had this?
Verna

[SoCalGal]

Hi Verna,
Many people have the lovely skin side effects - my onc told me that the skin probs are all from the tykerb. They are considered "favorable" if you can imagine that! Please search through older posts and you will find many comments on skin care and remedies. I use tea tree oil slightly diluted to calm things down. Regular acne meds seemed to make things worse for me.
Good luck,
Flori

[adrien]

Hello Verna,
I too have lovely whiteheads ( we used to call them when I was a teenager) and very dry skin (peeling) with a sore red rash. I've only been on Tykerb for 11 days and have started to apply a gel called Radiance gel that's a herbal preparation for use with radiotherapy treatment. It contains aloe vera, honey and Royal jelly as well as a blend of essential oils. This relieves the symptoms. Only time will tell really. It's available from www.pennybrohncancercare.org
formerly the Bristol Cancer care centre.
Good luck
Adrien

[Gina]

Many years ago, when I first started taking Herceptin back in 99, I began to get this acne rash all over my face and upper chest. My onc assured me it was NOT from the Herceptin, but my nurses took my complaints seriously (I mean, being 33 with 13-year old acne was no fun) and they looked it up in the side effect chart and said that 2 per cent of folks on herceptin will develop and acneform like rash...sounds very similar to what you are describing.

As tykerb and herceptin are both anti-her-2, it may be something in that proteome pathway that kicks off the acne...for me, it was a good thing, as I have used Herceptin alone, every since, so clearly, it was an early indication that I was responding...you will just have to see how things go, but I would take it as a positive sign. Eventually, mine went away on its own.

Best of luck
Gina

[Dina]

This probably isn't the right thread to ask...but yesterday I was told my bc is now in my liver and lungs. I was on tykerb and navelbine but had to come off the navelbine because of severe dehydration. The onc says his last remaining suggestion is tykerb and carboplatin, but he's not sure if the carboplatin will do more harm than good,

I'm quite weak, go out in a wheelchair, also of course feeling frightened - I have four kids aged 19 down to six, and just interested to hear advice from any of you guys out there...also your cheeriness always helps, love, Dina

[adrien]

To Dina,
I don't know that there is a 'right' thread. I'd like to send my best wishes (I think we know what they are) and just to say that I hope you have lots of support and love out there. I 'm thinking of you even though I we're strangers.
Love Adrien

[hutchibk]

Hi Verna - glad you are managing the diarrhea OK... here are some suggestions for rash and a few other Tykerb/Xeloda hints:

RASH
As far as rash, here are some of the fixes that can be tried by your doctor...

*Employ a proactive approach in managing skin reactions.
*Suggest that patients use a thick, alcohol-free emollient cream.
*Suggest that patients use a sunscreen of SPF 25 or higher, preferably
containing zinc oxide or titanium dioxide
* If patient presents with rash, verify appropriate administration of drug and proceed with the following therapy algorithm:

Mild Rash:
Minimally located
No impact on activities of daily life (ADL)
No sign of superinfection

(shows picture of mild rash occurrence across bridge of nose and cheeks)

Continue EGFR targeted treatment @current dose and monitor for change in severity.

***Use:
Topical hydrocortisone 1% or 2.5% cream and/or Clindamycin 1% gel

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.
_____________

Moderate Rash:
Generalized
Mild Symptoms (e.g. pruritus, tenderness)
Minimal impact on ADL
No sign of superinfection

(shows picture of red worsened rash occurrence (pruritus) across nose, around nostrils, top lip, lower cheeks, and entire chin.)

Continue EGFR targeted treatment @current dose and monitor for change in severity. Continue treatment of the skin reaction with the following:

***Use:
Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.
________________

Severe Rash:
Generalized
Severe symptoms (e.g. pruritus, tenderness)
Significant impact on ADL
Potential sign of superinfection

(shows picture of worsened rash occurrence similar to moderate with more facial coverage and continuation to shoulders and neck)

Reduce EGFR targeted therapy as per label and monitor for change in severity. Continue treatment of skin reaction with the following:

***Use:
Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID
Plus Medrol dose pack

Reassess after 2 weeks, if reaction worsens, dose interruption or discontinuation may be necessary.

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HAND/FOOT SYNDROME
To stave off hand foot symtoms, be sure to take your B6 (50mg per meal - total 100-150mg a day). If you have problems, we have a bunch of ladies here with cream suggestions that have helped. Personally, I love Brave Soldier Friction Zone. It is miraculous for the feet!!

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MISCELLANEOUS
Don't take any folic acid while on T/X - it can markedly worsen the side effects. You will find it in your multi vits and B complex, so stay away from those supplements while you are on T/X.

And no grapefruit products at all while on this regimine...

[Dina]

doctors have also given me oramorph and lorazepam for shortness of breath - anybody else taking anything similar? thanks, as always, Dina