T/X combo has knocked the socks off me.

[Roz]

Hi, I hope someone can give me support/advice. I have been on T/X since 5th October and have had diarrhoea (I'M finally going to learn how to spell the word, I 've used it so much lately) every couple of days. I take Immodium, tried slippery elm bark, and still it comes. Like someone has turned on a tap. I have finished one cycle and just begun the next when I saw my onc. She says that she thinks I should come off it for a week, and then go on a reduced dose. She says 3 Tykerb a day and 3 Xeloda for a while and then increase it. Has anybody else used this strategy? I think at present I really have no choice. I am sleeping a couple of hours through the day as well as 8 hours at night!! I went out for a meal last night, I was careful what i had, but it felt like an effort getting to the venue. I'm not normally like this and I HATE IT!!
Regards
Roz

[adrien]

Hi Roz I've just sent you a message.
Adrien

[Janet Taylor]

Roz, I can relate to everything you are saying. I started on Tykerb and Xeloda about the same time, and I am experiencing the same side effects. I see my onc on Wed. and she said she will consider changing my doses... I will let you know what she prescribes.

I hate being tied to a restroom. I feel like I need to stay within about 20 feet of one at all times. Ugh!

I look forward to reading the positive advice people give you!

JT

[hutchibk]

Hi Roz and Janet -

I don't know if it works for everyone, but I'll share my plan... I have been on the max dose of Tykerb and Xeloda since May and I no longer have any side effects. I was able to normalize and avoid diarrhea after about the first 5-6 weeks, but it takes some true discipline on my part.

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 (continuing with Tykerb everyday), and that seems to be more tolerable.

DIARRHEA
When experiencing diarrhea, I steer clear of milk and most dairy. I do eat occasional organic yogurt. I eat the BRAT diet (Banana, Rice ~I prefer brown rice~, Applesauce, Toast) in the morning for breakfast. Every morning when I have to, if diarrhea takes control again. I have found that I have to stay on a very very very strict clean diet. NO JUNK or fast food at all. No fried foods (it is scary how fast they can activate my diarrhea... but then they do directly activate the gall-bladder to dump it's bile, so it stands to reason). I drink mostly water, juices and tea. NO soft drinks other than Izze or the ones made with carbonation and pure juice (i.e. Italian sodas). 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 have been on T/X for 5 months now and I have only one day per cycle, at the very most, of diarrhea these days. I rarely need Immodium at all, but if I do, 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. Along with a very disciplined diet, to avoid immodium, you can take Bentonite Clay (1 tablespoon each morning, shaken very well in 8 oz. of juice or water and followed by an 8 oz glass of water). This hint was given to me by my nutritional doctor (who is cancer specific) and it worked very well for me as I was trying to get my body regulated in the early days. He also suggested I could try Carob Powder in juice or water, but recommended the clay as the better of the two to help as an absorptive agent in the bowels...

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

If you show up with more than very mild rash:

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.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

My hand/foot is in the form of sore toenails only, but B6 takes that away completely...

HAND/FOOT SYNDROME
To stave off hand foot symtoms, be sure to take your B6 (50mg per meal - total 100-150mg a day). For dry cracking skin on your feet, (which you must avoid at all costs, don't let it take hold!) we have a bunch of ladies here with cream suggestions that have helped. Personally, I love Brave Soldier Friction Zone. Some have had great results with one called Ahava.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

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!

[Roz]

Hi Brenda and Janet,
Thanks for the advice and commisserations. It is nice to know you are not alone, especially when you live alone like me and there is no one to "live" through it with you. My daughter is OK, but my friends are better. guess my daughter finds it hard to accept right now.
Anyway, I have tried the BRAT diet, nearly drove me mad, but still... I think maybe the key is to get on top of it. I left it for a while thinking ot would right itsel, and that may have been my downfall. I hope it is as simple as that. I also think that I will take electolytes immediately after diarrhoea to keep my system balanced. I just felt so dreadful, and began to sleep a lot. Perhaps that's a sign of electolytic imbalance. Again, i hope it is going to be that simple!! One wek on and one week off seems like a good way to go. I will discuss it with my onc. Thanks a lot.

[hutchibk]

I agree, dehydration and lack of electrolytes can really run you down and make you feel terrible.

[Becca]

Roz, I have been on T/X now for 7 months. On and off I have dealt with persistent but manageable diarhea, nausea, etc. I can see no pattern for it during the cycle--the problems just seems to vary. I eat a bland diet. Some days I feel reasonably well, others awful. About 10 days ago I had diarhea so bad--about 40 or more times in 12 hrs. I took at least 9 Imodiums. My onc wanted me out at the hospital, but it is a 30 min trip and I just couldn't do it. My husband took a stool sample out to the lab (no problem with it). I stayed off the chemos for a couple days, started the Tykerb again for 2 days, and there was that awful diarhea again. Went off chemo again and now am on 3 Tykerb and no X for 2 weeks (because of inflamed nails). So far am ok with this dose. I will go up to 4 Tykerb later to see what happens. Then perhaps back up to 5. Yes, the diarhea is very exhausting--I felt puny for several days after those episodes. My onc is pleased with the results of the T/X, so I will stay on it. Keep us posted on how you do on the reduced dose. Becca

[Vanessa]

I just started my Tykerb today, My doctor told me to start small and then increase the dosage. I only took 2 today and I am feeling a little sick at my stomach, but I am sure it will take a couple of days to kick in. Thanks for all of the advice, Brenda in such an organized manner. How about the inside of the mouth, does it dry out the lining? Any adivce on that.

[Vanessa]

I just started Tykerb today. I received it in the mail by fed ex. My doctor told me to start small (2 or 3) pills a day and then increase. I took 2 pills tonight, which I realize is a very small dose, but I haven't had any diarrhea yet, of course I realize it could hit me at any time. I am a little concerned about that side effect, but I am prepared with Immodium and will try the BRAT diet. I hope your side effects get better Roz.

I also appreciate your specific input Brenda, you have your information really organized. Anybody have dry lips and lining of the mouth. It seems like every chemo, antibody and even radiation has that as a side effect. I am interested in hearing about any other side effects anyone else had has and how they dealt with them. Also, can you purchase bentonite clay at a health food store? I am glad this tx is working for a lot of people.

[hutchibk]

Hi Vanessa - sorry, I have been in San Antonio for a couple of days...

I haven't had specific dry lips or inside of mouth other than the typical feeling of being a bit dehydrated... so I drink, drink, drink water and fluids like crazy. I bought my bottle of Bentonite Clay at Whole Foods...

Let us know how you are doing!! I am still sailing with relatively NO side effects from Tykerb/Xeloda. Best of luck as you ramp up your doseage.

[Vanessa]

Brenda,

I don't know how you are doing it and how you started out at the maximum dose. I started at 2 and got severely sick at my stomach. So, my doctor told me to stop it for a couple of days and then start at one. She also gave me a shot of Aloxi today. So I am taking 2 Zofrans during the day and 2 phenergans at night and still sick at my stomach. I am so glad you tolerate it so well and thanks for your tips.

Roz,

I am also sleeping a lot with it. Again, I don't know how I would have felt if I had taken more than 2 to begin with. I think I am supposed to start with 1 tomorrow night. Also, my doctor believes that part of my stomach trouble is from the high dose of steriods during radiation. Oh well, we will see. I am determined to take this medicine. Good luck to everyone that is struggling with Tykerb.

[Roz]

Hi Vanessa,
My oncologist said that they are seeing it in almost everybody. As my hospital has only got to dispense the EAP in the last few months, they are able to keep tabs on how people are responding. (i"m sure every hospital is the same tho) I looked up the dose of Tykerb I am taking and according to the official site 750mgms can be given to people with liver problems. So let's hope I can tolerate it so I can go up to 4 tabs in a week or so. Altho it's early days yet (3 days to be exact) I feel a whole lot better.

[Elizab]

I have been taking the same combo since late August. After a while, I started getting diarrhea daily, often multiple times. I go to an acupuncturist regularly. She has treated the diarrhea with acupuncture, and amazingly it is not troubling me any more. For what it's worth, I took Xeloda about 3 years ago (following Taxotere) and had very bad diarrhea. I was not doing acupuncture at that time. I tried Immodium, and then finally stopped the Xeloda. I really recommend the acupuncture.
Regarding the lowered dose, my doctor has lowered my Xeloda dose because my feet became very painful. Daily, I now take 1250 mg Tykerb and 2000 mg Xeloda.
Good luck,
Elizabeth

[Vanessa]

Roz, I am glad to know you are feeling better and I am hoping and praying that you can tolerate the larger dose.

Elizabeth, I have done accupunture before with great success. It has been several years ago for a different problem. Thanks for the tip.

[hutchibk]

You remind me that I need to get back to my regular accupuncture visits!

[Elizab]

Yes, I feel acupuncture has helped me tremendously, with energy and various other side effects. But the diarrhea results are "measurable" or "verifiable", not just my subjective say-so !

I have very good news about using Tykerb -Xeloda. I had a scan this week, after about 10 weeks using the 2, and the metastatic spot on my lung is gone !! Herceptin had stopped working for me, and then Taxol only worked for a short time and then stopped working, so I am a happy lady.

[Becca]

Elizabeth, that is great news about your scan. I am glad the T/X is working so well for you, just as it is for Brenda. Brenda has so few side effects with this combo too--that is a double positive for her. It gives me hope that I can do well with T/X and get adjusted to the side effects.

[adrien]

Hi,
I am on Tykerb only (no xeloda) as I'm having radiotherapy for skin tumours and do not have any diarreoha. I do have skin rashes but would be interested to know if there was anyone else out there on Tykerb only and what side effects they have experienced.
Are the dreaded runs a result of the combo or Tykerb alone?
Adrien

[hutchibk]

Eliza - congrats on the great news... Herc/Taxol was losing effectiveness for me too. I love T/X.

Adrien - post a seperate thread asking your question and I bet you will get lots of answers...

[Roz]

Hi All,
I have upped my dose of Tykerb to 4 a day and reduced the Xeloda to 2000mgm a day. I notice in the trials it was 2000mgm per day, so why has it been upped to 3000mgm, can anyone tell me?
I also had a little diarrhoea after stopping the Tykerb, and hit it with Gastro Ag,(Brenda I think that is like Bentonite Clay?) as well as slippery elm and root marshmallow. I took 2 Immodium and that evening saw the acupuncturist. Talk about big guns!! since seeing the acupucturist,(24 hours ago) I have been tired. She said to expect that, so here's hoping it goes away soon. I also got a terrible rash this time on my arms. I will start back on the Xeloda in a few days so I have my fingers crossed.

[Elizab]

The variation in dosages we are using is interesting to me.
I am taking 5 TYKERB a day (since day one). My Xeloda has been reduced several times because I am having a bad reaction in my feet -- this week I will start taking 1600 mg. a day. I didn't know the trial was only 200 mg a day - wow. I started with 2600 mg. of Xeloda a day. yuck.

I hope the acupuncture helps, Roz

[Roz]

Sorry Elizabeth, I meant to type 2000mgm daily.!! of Xeloda.

[Vanessa]

Has anyone stayed on 3 or 4 Tykerb per day. My doctor said that I may have to stop at 3 or 4, due to the severe diarrhea. I am also getting Abraxane and Herceptin on a weekly basis. I was dehydrated earlier this week and had to go in to my drs office to get a liter of IV fluids. I also felt much better after getting 5 mg of decadron with my chemo.

[Becca]

Vanessa, sorry you are having a rough time with the Tykerb. It is easy to get dehydrated with diarrhea. I took 5 Tykerb for several months, but it was rough on me. Now 4 Tykerb/day. My onco told me to use my judgement if I need to drop lower than 4. 1-3 times/month I take less. Last month on this thread you asked about dry lips,etc. The corners of my mouth and the inside feel irritated, especially with spicy or salty food or toothpaste. Wonder if anyone else has that problem? Hope you on better with the Tykerb soon.

[StephN]

Dear Vanessa -
Here is a link to a discussion on Acidophilus and how it helps with the extremely loose bowels.

http://her2support.org/vbulletin/showthread.php?t=30337&highlight=acidophilus

I talked with Joanna last week and she says she still is on this same schedule and tolerating the Tykerb very well. Does not have a big problem with the runs - in fact needs some Metamucil! Wouldn't that be a switch?!

P.S. I wanted to ask if you are using BIOTENE toothpaste? It is milder, but also fights the germs and dry mouth as well. I have kept using it since all my chemos.

[Becca]

Steph, thanks for the tip to use Biotene toothpaste. I tried it--much easier on the inside of the mouth. I eat Activa, but will eat it Every day to see if it helps me.

I feel like I know you and so many others on this great site. I started following the posts about 20 months ago, but only started posting recently. The courage I see in the members here has given me strength to face the treatments, surgeries, pain, etc in the last 2 years. I read your posts (and many others) regularly to know what new challenges you are facing, or the advice and encouragement you give others. Thanks for the help you have given me through your postings. Becca

[Roz HUNTER]

Hi Becca,
I have been gradually upping my dose of both Tykerb and Xeloda. I have been upping my Tykerb a half tablet every 2 weeks. I am now on 4 and a half, and I am taking 2500mgm of Xeloda every second day and 2000 every other day. I have read where the Tykerb serum blood saturation (?) reaches its peak after 6-7 days. That's when I get the rash. I will stay on 4 and a half, for a month and try to manage the 2500mgm of Xeloda if I can. Otherwise I will go back to 200mgm

[Diana1993]

Can anyone tell me the cost of Tykerb in the U.S. It is not available in Canada and I don't qualify for the clinical trial. I received this news about 1/2 hour ago. Any suggestions would be appreciated.

[Becca]

Roz Hunter, sounds like you are doing well at close to a full dose of both T/X. Have you been on it since last Spring, and is it helping you?

I wonder if you or any other gals have a hard time facing those big orange pills? Thankfully they are helping me, but I have a time getting them down. They are not any bigger than other pills I take, so it must be a mental thing with me. I can only get 2 down in a row, then wait 10 min or so to take the rest. Sometimes I gag. Always glad to have that over each day. The xeloda is no problem for me to swallow.

[Janet Taylor]

My Tykerb cost is a $20 co-pay and Anthem pays $3063 for 150 pills.

[Diana1993]

I have this internal struggle going on. It has been suggested by my onc that I take Tykerb along with xeloda since learning herceptin has stopped working for me. The dose recommended for Tykerb is 1250mg, 5 pills a day. The cost for me if I go to the States where it is approved by FDA, is approx. $3600. I might be able to afford a year, but was wondering if there are any success stories with taking xeloda alone or maybe taking fewer Tykerb (i.e.half). Do you think taking some Tykerb would be better than not taking any?
Thanks,
Diana.

[Janet Taylor]

Diana the pharmacy that mails me my Tykerb and Xelado is called Pharma Care Specialty Pharmacy in Detroit, MI. The phone number is 1-800-571-9833. Ask for Peter; he is the one that answers all of my Tykerb questions.

[Elizab]

Diana, I think you might want to ask your onc that question about taking a smaller dose of Tykerb. As I read through the posts in "Herceptin/Tykerb" it sounds like some people are taking fewer than 2500 mg of Tykerb a day (mainly because they have difficulty tolerating it, I think). It may be a difficult question to answer definitively because the drug is so newly available. We are all on a learning curve here (our oncologists included) about dosage. All I know is that the Tykerb is the drug that focuses on Her2Neu. Xeloda is a generally used chemo, not just for people with Her2Neu.
There is also a support program called "Tykerb Cares." Perhaps you could call them and ask your question about a lower dose. You can google "Tykerb Cares" or the US phone number is 1-866-489-5372. I wish you luck in making a decision about this.
Elizabeth

[Roz]

Becca, I have been on Tykerb since 5th October,and was off it for a week on week 4. Started back on a reduced dose of 3, then 3 and a half, then 4 then 4 and a half. Onc wants me to have CT scan next week, but who wants to know before Christmas, I would rather go through to the New Year and have my scan 1st week in January. Will know then whether it is working or not!

[Elizab]

Diana, I think you might want to ask your onc that question about taking a smaller dose of Tykerb. As I read through the posts in "Herceptin/Tykerb" it sounds like some people are taking fewer than 2500 mg of Tykerb a day (mainly because they have difficulty tolerating it, I think). It may be a difficult question to answer definitively because the drug is so newly available. We are all on a learning curve here (our oncologists included) about dosage. All I know is that the Tykerb is the drug that focuses on Her2Neu. Xeloda is a generally used chemo, not just for people with Her2Neu.
There is also a support program called "Tykerb Cares." Perhaps you could call them and ask your question about a lower dose. You can google "Tykerb Cares" or the US phone number is 1-866-489-5372. I wish you luck in making a decision about this.
I took Xeloda alone several years ago, before I ever took Herceptin . I had taken Taxotere for several months, and then moved on to Xeloda.
Elizabeth

[Diana1993]

Thank you Elizabeth and Janet for your responses. I have one more CT scan on Monday (new improved machine) and if it picks up any measurable marker, I will be accepted in the clinical trial. Apparently all that is reported is scar tissue and "fuzzy" changes. I'm waiting for the Urologist to call re: insertion of a kidney stent. Here we go again. And of course I don't know if the shut down of the nuculer (sp?) plant will halt my CT scan. I have been on this journey since 1993 and I have learned most plans work out for a reason. It is amazing; four years ago, I turned down second round of chemo and then two years later said yes to Taxotere and Herceptin. It wasn't all that bad so I will join the "fun run" gang and come here and look up advice on how to deal with rashes and.....................(this proves I read almost all threads) So for now it is a wait and see and in the meantime I can get my Christmas decorations up and enjoy the rich food, it may be the last for awhile. I will use any excuse to eat goodies.
Diana.