New to HER2 Support group &Xeloda/Tykerb

[JoyceR]

I am new to this so please be patient if I make errors.

I completed 1 cycle of Xeloda and Tykerb with major abdominal cramps, and severe diarrhea that Imodium A-D didn't even slow down. The skin on my face started to break down (raw & oozing in many places) and I had lots of white heads.

My Oncologist had me take a break to heal my intestinal tract. After 8 days off I am back on treatment now for 4 days with a dosage cut on the Xeloda to 3 and 3 from 3 and 4. I still am taking 5 Tykerb. Today the diarrhea and cramping is starting again.

Has anyone had side effects like these that they have been able to get under control or am I probably looking at another medication change.

JoyceR

[hutchibk]

Hi Joyce -

please don't jump ship yet... try a few things first to see if you can mitigate the symptoms.

Some women do one week on and one week off of Xeloda, and that seems to be more tolerable.

DIARRHEA
For diarrhea, I steer clear of milk and most dairy. I do eat occasional organic yogurt. I eat the BRAT (banana, rice ~I prefer brown rice~, applesauce, toast) in the morning for breakfast. Every morning if I have to. I have found that I have to stay on a very very very strict clean diet. NO JUNK at all. I drink mostly water, juices and tea. NO soft drinks other than Izze or the ones made with carbonation and pure juice. I eat a 50/50 raw and cooked vegetable diet everyday. Salads, fruit, veggies (steamed, raw, sauteed), whole grains (brown rice, quinoa, oats, etc), whole grain pastas and breads (in other words, no bleached white flour products), natural meats sparingly, occasional cheese, lots of beans, cook with olive oil and I steer clear of sugar as much as possible. The cleaner my diet and the more disciplined I am about it, the less diarrhea I have. I am on my 7th round of T/X and I have only one day per cycle, at the most, of diarrhea these days. If I need Immodium at all, it is only one day out of 21... I know diet is a huge factor based on my experience, as I have gotten lazy a time or two (especially when traveling), and fast food has been my intestinal downfall. When I corrected to my clean diet, all was well again in a few days. If that doesn't help you enough after a week or two, you can look into Bentonite Clay or Carob Powder to help as an absorptive agent in the bowels...

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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...


I hope this helps! Don't give up!

[JoyceR]

Brenda,
Thanks for your words of encouragement and the info. I have been eating most of the things you suggest but everytime I eat anything else the big "D" comes raging back. I kind of had it in control before my onc took me off for a week but I ate a small cut of tomato soup and wowwie what an awful experience. It took 5 days to get over that off meds.

I read the info about skin several weeks ago but thanks for sharing it with me. I've printed it and am taking it in when I see the Dr. He's done a great job of managing all my side effects on other treatments but he doesn't seem to think that if I just wait it out the diarrhea is going to go away. The things I've done I already knew from treating diarrhea in my daughter when she was little. But it looks like these techniques aren't going to be ways of getting the diarrhea to stop but a permanent way of living. Since he says this will be an "until it doesn't work or you say you won't take it any more" treatment.

Thanks again for your response.

Joyce

[Joe]

Joyce,
Utilize our search feature on the boards. There has been a lot of discussion about Tykerb side effects the past few months.

Welcome to our group.

Regards
Joe

[Carolyns]

Hi Joyce,

I think that some of the others here have cut back on the dosage of Tykerb and then built back up over time. Perhaps they will chime in soon.

Sorry that you are suffering.

Carolyns

[Esther]

Joyce, my side effects from Tykerb were so severe that my onc said the only thing that would relieve it would be taking a break.

I didn't want to do that, so I dropped down to 3 pills a day of Tykerb, and managed better on that dosage. After about 2 months I upgraded back to 5 pills a day and was able to tolerate that dosage with little side effects.

Perhaps you can discuss with your onc if a drop in the dosage is appropriate for you.

The recommended dosage of Xeloda on the Tykerb web site is 2 pills twice a day. Check it out.

[JoyceR]

Thanks to all of you for the info. My NP called on Wed.. I had been doing the BRAT diet and the diarrhea was improved but I had been on the couch feeling awful for days. So ... I'm off it again. I see my Onc this coming Thurs 10/4 and will take along your comments.

I had been on Navelbine/Herceptin for 13 months every week. My lungs had cleared and my bones had stabalized, one of my liver tumors was smaller, one stable the other 2 had increased in size. That was the reason for my change to Xeloda and Tykerb.

I feel good off treatment - no symptoms and I really want to go to FL in Oct.. So ... even though he has told me I will never get a drug vacation or be off treatment (except when there is a need to change protocols) I think I'm going to tell him I'm going to FL for 4 weeks and we can start treatment again when I come back.

We'll see if I can hold out for that when I get there Thursday.

JoyceR

[TerriLynne]

Hi

I am on day 4 of my first cycle of Xoleda and Tykerb in the UK (LEAP study). I have had some advice from the research team as to side effects and how to deal with them but nothing on the scale of the information and advice here. I thought I had been doing well on the diet front being mostly vegan for four years (occasional laspses mostly to appease others when dining out), vegetarian for six years before that and trying to have organic produce where possible but have seen several references in messages on this site to the BRAT diet - sounds hard work but if it helps with length and quality of life I am prepared to do whatever it takes. Is there more information available via the web or a published article/book that I could track down?

Also I have entered my history - how do I get it to appear on my posts?

Best wishes

Terri

[hutchibk]

Terri - BRAT diet really just stands for Bananas, Rice, Applesauce, Toast. Those things in combination are very absorptive and effective for helping control bouts of diarrhea - when I was having more episodes of diarrhea, I would eat the BRAT diet for breakfast every morning to set the day off right and help absorb excess fluids in the intestinal track. Now I just revert to it if I have an "episode" - and I make sure I mix those things into my diet throughout the week to help keep me regular.

In order for your history to appear under your posts, you need to enter it in the 'signature' option under your control panel.

[JoyceR]

I say the Oncology on Thursday. I am going to FL 10/13-11/7. I will have abdominal CT and chest x-rays on 11/8 and the see onc again. We will try Xeloda & Tykerb at a lower dose. He wants to try to find a dose my body will tolerate.

10/13- 11/7 I don't have cancer and will have lots of fun on the beach!

Thanks to everyone for the information!

JoyceR

[Susan2]

When I started Tykerb and Xeloda, I had the similar symptoms. It was so bad that I became dehydrated. I took a 2 week vacation from all meds and then restarted with just Tykerb. It's been 2 months and everything's good. No diarrhea and scans are good.

Have a marvelous vacation and soak up the sun - just remember your hat and sunscreen.