Tykerb Cares Program

[Esther]

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.

[Sherryg683]

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

[Esther]

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.

[Sherryg683]

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

[Sherryg683]

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

[bailey]

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

[Adriana Mangus]

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.

[bailey]

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.

[Lolly]

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

[bailey]

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

[Lolly]

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

[bailey]

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

[koolmom]

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

[bailey]

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

[Esther]

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.

[Lolly]

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.

[Joy]

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.

[Andrea Barnett Budin]

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

[bailey]

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

[Lala]

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,

[Andrea Barnett Budin]

Bailey, Sorry about all the side effects, but you seem to be on top of ea w/a back up plan. Good for you! That's the way to do it. 1 side effect at a time. Re DIARRHEA -- when I was put on Taxotere (have mets to liver and 4 Adria and 8 CMF) I began the diarrhea thing. Never had an issue in that department before. Docs kept telling me it wasn't coming from Taxotere. I was/am an IBS (irritable bowel syndrome) patient. Thank you very much. I needed this fear of exploding at any given moment to add to my concerns. I hear this girgling noise in my belly and I know I have less than a minute to get myself to a toilet. I have seen numerous Gastro docs, been on numerous drugs. Read up on the Internet about the condition and learned to be on the lookout for "trigger" foods (for me -- nuts, corn, cheese, but can take small amnts of lowfat cheese, chocolate, splenda, sugar, anything greasy or fried -- all the things I love). But the consequences aren't worth eating these things. THEN I FOUND FROM MY NY ONCOL/HEMATOL/NUTRITIONAL EXPERT -- BUY N-WOBENZYM AT THE HEALTH FOOD STORE. TAKE 2 TWICE A DAY, W/A MEAL. MADE ME 90%+ BETTER.

Then a yr later I was put on Effexor (anti-depressant that could stop my hot flashing). That had reached an all-time high. I was post menopausal, age 50 when initially dx in '95. Have been FLASHING since I was forty. I am now 62, THANK YOU GOD AND DR. SLAMON AND ALL MY ONCS AND EVEN NASTY OLD TAXOTERE, BUT ESP HERCEPTIN!!!! Anyway -- the point -- the Effexor did NOT help the flashing BUT -- it has eradicated my IBS. A mystery to be sure. Sometimes I need 1 Imodium. Used to have uncontrollable diarrhea 5 out of 7 days. Used to take 20! Imodium and it didn't help much. When I asked my docs about taking 20, they asked, Then what happens? Then the diarrhea stops and the next day I am normal. No constipation, then, they asked. Never, I said. Then, go for it. Interesting.

I wish you all a wondrous remedy for every side effect you suffer from with all my heart! Sending loving, healing energy to every soul sister out there, ANDI

[bailey]

Lala - thank you so much for your response. Right now I am on 5 Tykerb/day and 6 xeloda/day - 3 in the morning and 3 in the evening - 14 days on and 7 days off of xeloda - right now I am off the xeloda for the 7 days. What was your dosage of xeloda reduced to and what did you start with? I was told to take just 1/4 imodium so I'm not too constipated. When you talk about bulking up what foods are you talking about? I have been drinking lots of water and drinking propel for the electrolytes - what electrolyte pill are you taking? I also eat a banana/day for the potassium which is normally good. Any more info you have and answers to my questions would help as I see the Onc on Wed. and want to be more knowledgable. Also, how long before your side effects subsided - I'm ready to throw in the towel which is not me at all. Plse. let me know.
Thanks and hugs to you
Bailey

[bailey]

Andrea - I was on Effexor in 2003 when my cancer mets to lung and liver but I weaned myself off last year - it's an antidepressant and I wanted off - it did help with my hot flashes but I really have not had them the last number of months anyway - I am 54. I have been researching acidic/alkaline foods in the body and found it to be so interesting. I have had some heartburn issues - now on nexium or prilosec but in my research found that when you are sick and on meds your body tends to be very acidic when it should be balanced and preferably towards the alkaline so I'm eating things like lemon and watermelon that you would think would be acidic but when ingested are actually alkaline. Also, I take a tsp. of baking soda with water about 5 times/day to help with heartburn and all this seems to be working somewhat. Also pineapple. They recommend mostly vegies and fruit and actually recommend eating 80% alkaline foods and 20% alkaline foods till your body neutralizes then you can eat 60 alk. and 40 acidic - it seems to be working somehow. Also, the bananas are awesome for potassium and a million other things. Yogurt with acidopholus is important . Right now my stomach continues to be hit and miss - I'm not sure what to eat . So much diarhea - I'm afraid to eat too much vegies and salads as it'll make it worse - I don't know what to do.
If anyone else has more info. plse. forward. Also, what is this N-Wobenzym you mention?
Help help - thanks
Hugs,
Bailey

[Andrea Barnett Budin]

Can you use this product (Jan Marini) on the face? For wrinkles? I have a rosacea like rash on my arms for yrs Doesn't itch, but is very apparent. It is on my declotee area (?sp) as well. I think it's from the Herceptin, but am not sure. Am interested. Please let me know. AndiBB@Aol.com Sending happy, healthy energy your way... ANDI

[Andrea Barnett Budin]

Bailey, It's an immune booster, anti-inflammatory, I think. I checked it out on the Internet, as I do everything any doc recommends, when I started it in '05. Can't remember details now. But I do know that it changed my life! 2 w/meals twice a day (different I think, than as directed on bottle). Did the trick. I now also take probiotic Asidophilus (friendly bacteria, maintaining healthy microflora and major gas relief). One capsule twice a day. Wonderful. + Fennel seeds, relieve gas and "settle" stomach. Can take 3 a day. I do.

I had been on Zoloft at one point over the last 12 yrs. Anti-depressant. Took 1/2 dose. Every time I'd give my list of meds to a doc, they'd say, You know it's probably not working at that dosage... And I'd reply, but I feel so great, I don't want to stop. Did wean myself off. Then came my mets into the liver. Then I used Ativan at night or mid day if I was home, which being on Taxotere and wiped out from it I mostly was. When the hot flashing of 22 yrs hit big time, dripping wet all day, I began the Effexor. Which, as I think I said, did not help the hot flashes, but did help the diarrhea to the point that I gave up the Wobenzym. Didn't need it anymore. Strange. AND I feel I can deal w/the every day business of staying a Survivor. Been NED/STABLE since '99. It's hard work staying there and remaining joyful and zen serene. It allows me to stay in touch with my spiritual core, connected to my Soul, which keeps me well and healthy. I give strict orders to my bod daily -- stay well and healthy. That's what I wish for you and all my beloved soul sisters in our zeal to triumph over bc and keep on smiling... Much love, ANDI

[Lala]

Bailey

I sent you a private message to answer your questions.

[hutchibk]

Lala, we are keeping you busy with the private messages! You rock!

Bailey - Hang on! You can do it. If you need, your Onc can lower your Xeloda dose and it should really help. I too had headaches during my first 2 weeks on Xeloda. I am on my second round and I don't have anymore headaches... Also on this second round, I am not having diarrhea anymore either. But I am really thinking out what I eat to help with that. And, I only had the rash for the first 10 days, it manifested as rosy, dry cheeks - making me look like Raggedy Anne. I use Dr Weil's planidote mega mushroom lotion and cream... it works great (but it's not cheap!) Today I started to get some of the earliest indications of hand/foot... with stinging and redness in the crooks of my toes. I am taking B6 (50 mg 2 x day) and am looking into getting some topical urea/lactic acid from the dermo to try and prevent it. I highly suggest googling "hand/foot syndrome prevention" - I learned a lot about it that I didn't know.

As far as bulking foods, think the BRAT diet. Bananas, Rice, Applesauce, Toast and Tea. I cook a big pot of brown rice about twice a week and put it in the fridge. I usually eat a BRAT breakfast, almost every morning. I believe that really helps me keep the diarrhea at bay. I only had to use immodium 3 times in the first 3 weeks...

If you are having a lot of diarrhea, then you are probably dehydrated as Lala mentioned... and dehydration can be a primary cause of headaches. Make sure you are drinking 80 - 100 oz of water a day. VERY IMPORTANT!
Don't take any multi-vits or supplements with folic acid in them as it makes the side-effects of this combination worse.

Don't give up!! You can do this. Talk to your Onc and let them know that it is beating you up and they can lower your dose.

[Andrea Barnett Budin]

YES, I ECHO bRENDA'S COMMENTS! 10 8OZ GLASSES OF BOTTLED WATER A DAY! It's all about the water. Keeping hydrated every single day is a job. Water is your forever prescription to take daily. Walk from room to room, go from place to place, with WATER. It keeps you hydrated. Is great for your skin. And most importantly -- flushes the toxins out of your body!!!

It can not be stressed enough. In real estate it's LOCATION, LOCATION, LOCATION. In bc health -- it's WATER, WATER, WATER. And, yes, much peeing. Get used to it. It's for your health and well-being.

Hope the onc lowers yr dosage so the headaches go away. Wish you ALL health and wellness. I have this entire board in my prayers. Sending happy, healing energy to all my sisters... ANDI