Xeloda and Tykerb tomorrow - side effects?

[Carolyns]

Hi All,

I am starting Xeloda and Tykerb tomorrow. Navelbine has begun to fail so it is off to a new treatment. I have been on Herceptin for 3 years now in a metastatic setting.

I took Herceptin and Tykerb for a while together a couple of years ago and did very well for about 3 months.

Questions: Nausea - I have had it with all chemos but have never been on chemo every day. Has anyone else had nausea with every chemo and not with Xeloda? How do you treat nausea with Xeloda? I have Zofran but will I need to take it every day?

Thanks, Carolyn

[Jackie07]

According to this posting by Sarah in August last year, nausea was not mentioned, but...

Hello,
Read this in my favorite newspaper and thought it might interest and hopefully help those having side effects with Xeloda.


Want a zillion-dollar cure idea?
By Monique Doyle Spencer

Friday, August 15, 2008
How do people get a good idea noticed? It's not so easy.
It was a 23-year-old medical student, Ernest Duchesne, who discovered penicillin 32 years before Alexander Fleming. But who listens to a kid? So the idea went nowhere, and Duchesne, due to God's really immature love of irony, died of tuberculosis. So did a lot of other people.

So now I know something that I need to tell the world. There is a new study from a university in Turkey about a treatment for a painful chemotherapy side effect. The side effect is from a chemotherapy drug for metastatic, or in medical terms "not so great," breast and colon cancer. The drug is Xeloda (capecitabine). It's a good drug, but for some reason, it can burn the daylights out of your feet and hands. Your response comes in Grades 1, 2 or 3. In Grade 3, you can't walk. Your feet are covered with blisters, and it's like walking on some evil form of bubble wrap.

There is no proven treatment for this side effect except this: to lower the dose or stop or delay treatment. These are not great options.

I don't do a lot of cancer research, but my husband does. He found the study on www.springerlink.com. Researchers tested a simple treatment, long used by desert dwellers to cool the skin. It's pure henna powder, mixed with lemon juice and hot water.
I was desperate with Grade 3. I tried every cream and vitamin idea that anybody had. Nothing worked. I spent a week lying down for relief. Please don't tell my employer, because apparently nobody noticed I wasn't there.

I'm no New Ager, I don't own a single Enya CD, and I was skeptical. I asked my oncologist. He was all for it. I tried the henna. You make a paste out of green powder, even though it's going to dye your skin saffron. You leave it on for six hours. I just knew it would not work.

Holy Mother of God. The fire is out. My feet feel ... normal. Now the creams can work, to heal the damage to the skin, because the big flame is put out. No blisters. No raw skin. No heat.
I couldn't wait to notify Roche Pharmaceuticals, which makes Xeloda. The company had no information about this on its Web site, so I knew it would jump right on it. I figured Roche would contact these guys in Turkey, fund a bigger study, then develop its own zillion-dollar version of henna. I don't care what it does, as long as it does something.

Roche wrote back. It told me to read its Web site to be informed about possible side effects of Xeloda. While I admit that I was just a teensy bit annoyed, I actually did look at it for the umpteenth time. Well, I noticed a new thing, besides that it offers no cure for this side effect: that the photos it shows of it are about one-tenth as bad as the real thing.

Here's the best part: Roche signed its response: "Thank you for your interest in Xeloda. We wish you and your mother the best of health." Yikes. Mom died in 1988. What are they trying to tell me?

Of course, the problem with natural remedies is that you can't patent them, so you can't make any money. Still, I bet a company could extract the active ingredient from henna, make an ointment for pennies, and turn around and sell it for dollars, but I'm not a scientist. I'm just thinking that since Xeloda costs $1,500 every three weeks, and you take it for life, maybe a pharmaceutical company could fund a study.

Whether there's a windfall in it or not, I think if you make a great product, and it happens to cause an awful side effect, maybe you could be a little interested in a treatment. I picture Ernest Duchesne writing to them about penicillin. "We are sorry to hear of your death as we care about our patients. Please see our Web site for helpful information and tips about tuberculosis."

Monique Doyle Spencer is author of "The Courage Muscle: A Chicken's Guide to Living With Breast Cancer."

[Rob]

Jackie07
How do we get this article to the "front page" of this forum? It may be the answer to a lot of problems.
Rob

[BarbM]

I've been using henna for the last month for my hand/foot syndrome while on Xeloda. It's working great for my hands and feet...and I know how bad it can be while I was on Doxil without the henna. Henna is very easy to use...check out Monique Doyle Spencer's blog : www.xelodasideeffects.blogspot.com. She explains it all.
~Barb
P.S. No nausea for me with Xeloda...just the hand/foot syndrome. But, I never have experienced nausea with chemos.

[Lauralei]

Where did you find henna???

[Rob]

Bought henna [MDH Henna Powder] in an East Indian grocery store in Ottawa. 100g for $2.50 CN. Get pure henna powder [no additives for cosmetic, etc purposes] from the current crop, should be a green powder. Old stuff will be brown. Also got a sample from Khadija Dawn Carryl, 905-230-4651, or info@hennasooq.com, or
www.HennaSooq.com.
Rob

[BarbM]

I order mine from www.hennacaravan.com. Also, I order Jamila. So far, it's working!
~Barb

[Lauralei]

Thank you! And how do you make the paste? How long do you keep the mixture on your feet? Thanks for the help and the suggestions!
Lauralei

[BarbM]

I boil 1/4 of a cup of water, then add 1/8 cup of henna to the hot water and stir with a plastic spoon (should be the consistancy of tomato soup or a little thicker), then pour into a small plastic container....let it cool before applying with a small foam painting brush. I use newspaper to cover my work space because henna stains. I leave the henna on until it dries, maybe 15 minutes. Then, I wash it off with cool water. Leave the prepared henna in the refrigerator for up to a week. The unused dry henna in the box should be stored in the freezer.
Good luck!

[Lauralei]

Thank you so much for the instructions! I am going to try this. My feet have been better since I stopped taking my multivitamin with 100% folic acid.

[Midwest Alice]

Barb, Hi I went to their web page. Does it color your feet?

[BarbM]

Alice,
It leaves my feet orangish, but it fades pretty fast. It's also very drying, so I use a lot of moisturizer (Bag Balm & Udderly Smooth). So far, so good...and this is coming from someone that had a bad time on Doxil...sore, red,peeling hands and feet. As soon as I was off the Doxil and on to Xeloda, I began using henna. Now, I don't have nearly this issue....some redness and pain, but very tolerable.
~Barb

Hi Carolyn

I have been on Xeloda and tykerb for 6 months now... love to chat with you...

email me

[email]erafetto11@aol.3Y23Ph

[jml]

Hi Carolyn~

I've been on Tykerb/Xeloda since the beginning of June, and so far so good (except for the fact that I'm paying for it out of pocket right now, due to no Rx coverage and grueling efforts to get patient assistance from Roche & GSK...but that's another story for another board!).

Getting the dosing schedule just right was the challenging part in the beginning, ie-remembering to eat with Xeloda, remembering to NOT eat w/Tykerb, etc.
I tried the dosing schedule as recommended by other folks here, but it didn't work so well for me.
My work day starts very early, since I own a Pilates studio & have early,early morning clients & classes. I found that uploading the a.m. dose of Xeloda, followed by the Tykerb made me nauseaus, flu'ish & tiredTiredTIRED all day long.

Here's what has worked for me:
*9pm Xeloda-dose 1 (w/a little food)
*11pm Tykerb (empty stomach)
...this allows me to sleep through the initial side effects of uploading the drug
*9am Xeloda-dose 2

I did have some GI issues in the beginning, but nothing horrible, and now 2 months in, my body has adjusted, though can still experience some GI stuff.

I thought I would be so relieved to do these drugs at home & not have to go into the infusion center for treatment, but it hasn't been quite so.
Ironically, I've found that since we're taking these 11 pills a day, throughout the day, this disease & treament is constantly "in your face". At least when I was going in for my infusions - whether once a week or once every two or three weeks, I knew that I'd be chained to "The Chair" for 4+ hours, have a couple of days of "post-chemo yuck", then have a physical & mental break from thinking about my disease & treatment, until the next infusion.
Because of the scheduling of this regimen, I have to constantly remember how to accomodate it within my day-I have alarms set on my phone & carry food with me so that I can take my morning dose of Xeloda while at the studio and sometimes I fall asleep without taking my Tykerb. All in all, I'm having a good experience with it & I hope you do too!
Ultimately, I'm happy to take any treatment regimen, and will endure the side effects/inconveniences, so long as it's WORKING!

I hope this info is helpful!

Keep the Faith~

Jessica

Your are a brave woman. I hope you are doing well. Can you share your experience with the combination of Xeloda, Tykerb, Ixempra? Is it working. Are the side effects worse when you added Ixempra?

Thanks, God bless

Maria Isabel

[jml]

Hi Maria Isabel- I don't know if your lost post/question was directed to me, but I thought I'd go ahead and respond.
I was on Tykerb/Xeloda for about 5 months last Summer-Fall, but progressed on that combo so switched to Tykerb/Herceptin.
Progressed on that too, so switched to Ixempra/Herpectin.
I've been on this combo since February and am on my 5th cycle now.
Ixempra is a pretty tough drug -the toughest of all the many drug combos I've been on during this 8 year journey. I'm not able to work currently, my mom & sisters have been traveling back & forth to stay with me & help keep me on my feet. There are many days that I don't leave the house because my energy is so low.
BUT, it's working really well to clean up the lymph nodes in my belly and that's what counts.
My doc says I may get to take a break after this cycle & scans, so I'm holding on to that. In the meantime, I'll just lie low, watch lots HGTV and spend quality time with my family.
This is only temporary and I will have my health and balance back to my life very soon.
Hope this info is helpful.
Keep the Faith~

Jml