herceptin + tykerb (no xeloda)
 

I will soon be starting Tykerb (1000mg/day same as 4 pills/day) in addition to my Herceptin treatment. I am not on Xeloda.

For anyone who is already on Tykerb + herceptin but not on Xeloda:
1) how long have you been taking Tykerb + Herceptin?
2) what side effects did you experience?
3) how soon after starting Tykerb did you experience the side effects?
4) what did you do or take to minimize the side effects?
5) did you start off at the max dose, or did you gradually work your way up to the max dose?
6) do the side effects persist or does your body adjust to it and normalize? If so, how long did it take?
7) Did Tykerb help shrink your mets? How long did it take to have an effect and what kind of shrinkage did you see?

Any advice, recommendations and personal experiences are appreciated.

Sincerely,

Dikla
Her2+, ER+, PR+
previous mets to bone
current mets to lung
currently on Herceptin, Faslodex, Zoladex, Zometa
will soon start Tykerb

Re: herceptin + tykerb (no xeloda)
 

I am ER- PR- Highly HER2 positive (20.2 Fish score) with mets to the neck so my breast cancer is different than yours. I am only on Herceptin/Tykerb so I will try to answer your questions.
1) Started 3/14/09 at 1000 mg/day. Reduced to 750mg/day as of 3/24/09
2) Experienced severe hives all over body after 7 days. Stopped Tykerb for 3 days and then restarted at reduced dosage. Rash on face lasted about two months—looks like acne. Chronic diarrhea and fatigue which I don’t think are going away. Shortness of breath and chronic cough which the docs do not feel is a side effect of Tykerb but rather inflammation of my lungs.
3) Immediately
4) I take 150mg Zyrtec, 150mg Zantac, and lomotil almost daily. I am also taking Prednisone for my cough. Steroids in general make one feel better so that may factor into how I am doing.
5) See #1
6) See #2
7) Pet Scan 12/15/08 1.5X1.2cm with a max SUV of 3.3
Pet Scan 3/9/09 2.2X2.5cm with a max SUV 6.3
Pet Scan 6/1/09 1.2 X1.2 cm with a max SUV 3.0
(tumor markers do not work for me so I will continue to get Pet scans every 3 months---next one scheduled for end of August)

Tykerb is a much harder drug to tolerate than Herceptin. There is very little data on how this combo is working. The longest I have heard is one year---not what I would like but at least I know. Dikla, please keep me posted on how you do and I will do the same. If you have other questions, feel free to e-mail me at nana@lamarca.org.

Re: herceptin + tykerb (no xeloda)
 

Nancy: I too had to drop Tykerb dose down to 3 pills 750 mg a day along with week on week off 1000 mg of Xeloda and since I had to reduce dose of Tykerb, I begged for Herceptin and onc agreed and gave me the Herceptin today. I was just too nervous that 750 mg is not going to be an effective dose. This dose has been okay for me. No stool soup, just fatique and low appetite. I had the chest pain and cough at 4 pills and it increased the cough a lot when I tried 5 pills. those symptoms went away at lower 750 dose.

Have you tried Suki oil on your face rash? I got rash right away on my face and the oil seemed to clear it right up.

Hope we all find benefit from this combo.

Feel well soon...Darlene

Re: herceptin + tykerb (no xeloda)
 

I'm only on Herceptin + Tykerb for a clinical trail to see if tumor will shrink. Tumor started out at 8cm, not hormone receptive, Stage II, speck in one lymph node. I get Herceptin weekly and take 4 Tykerb each day. Below are my answers to your questions.





how long have you been taking Tykerb + Herceptin?
6 weeks
2) what side effects did you experience?
fatigue, runny nose, mouth sores-use Prevention mouth rinse and a dr script for "majic mouthwash" when they really get bad. They were only really bad for about 3 days, better now. I have had a little diarrhea but rarely. Trouble sleeping. My potassium level dropped dangerously low 3 weeks ago--they gave me a potassium drip and I take 2 potassium pills a day. Have felt much better since that went back up. The first month I had no appetite but that is improving. Also have bloody nose from time to time.
3) how soon after starting Tykerb did you experience the side effects?
Had diarrhea at first but got better, runny nose started in the beginning along with the fatigue, mouth sores didn't occur until about 3 weeks in. So far, no skin rash.
Bloody nose from time to time. Use A & D ointment in nose when that flares up.
4) what did you do or take to minimize the side effects?
See above. Dr also gave me ambien to help with sleeping and Allegra for runny nose. Avoid salads as they bring on the stomach issues
5) did you start off at the max dose, or did you gradually work your way up to the max dose?
started with 4 pills a day and will continue that for 3 months.
6) do the side effects persist or does your body adjust to it and normalize? If so, how long did it take?
Body seems to have adjusted somwhat. The fatigue is still there but not as often as it used to be.
7) Did Tykerb help shrink your mets? How long did it take to have an effect and what kind of shrinkage did you see?
My tumor is now 2cm x 2 1/2. Shrinkage started for me within the first 2 weeks. 2 weeks ago it was 5x3 and it started out at 8cm.

I hope this helps. My side effects for me seem to be unpredictable. I would usually feel bad on Sat & Sun but that seems to be getting better but could feel like crap tomorrow?

I hope this works with you. So far it's working for me. I am newly diagnosed in May 2009.

Re: herceptin + tykerb (no xeloda)
 

I began taking Herceptin and Tykerb last November in a clinical trial for early stage HER2+. Actually my cancer was diagnosed stage 3 because evern though my tumor was 3cm, I had 21 positive lymph nodes. I was very lucky, there were no other organs involved, so I was able to get into this trial. The first 12 weeks (this actually turned into 14 weeks because two weeks my meds had to be held because of low WBC and fever) I also received Taxol. These treatments were weekly. In Feburary I began taking the Herceptin evey three weeks and the Tykerb continued on a daily basis. I will take both of these a total of one year and will finish before Thankgiving.

The study had reduced the initial dosage to 750 my as long as the patients are also receiving Taxol. I had sever diarrhea, so they dropped my dose to 500 mg during those first 14 weeks. Now I take 750 mg and have learned to manage some of the side effects. A low fiber diet that aviods fresh fruits, vegs, and whole wheat bread has really helped. I also aviod dairy products. I do still have some cramping and loose stools though. I take 2 Imodiums and 1 Lomotil at a time and I have found this helps me. A number of women have dropped out of the study because of this.

I do have fatigue, but it is much better than when I was taking regular chemo. The Tykerb also causes me to have very sore fingers and toes. They will bleed when bumped and I have had to see a poditritist twice for ingrown toenails.

However, I look upon these side effects as aggravations. When I first began treatment I had Adromycin and Cytoxin for eight weeks. I have also had radiation. I feel so much better now that I am on only Herceptin and Tykerb. My blood work in normal and my liver functions are too. I am beginning to get my life back!!

Good luck to you. You will be in my prayers.
Sandra

Re: herceptin + tykerb (no xeloda)
 

Hi Dikla,

I took Tykerb w/ Herceptin for 3 months and stayed stable.
For anyone who is already on Tykerb + herceptin but not on Xeloda:
2) what side effects did you experience? Loose bowel movement one time per day.
3) how soon after starting Tykerb did you experience the side effects? Soon after starting.
4) what did you do or take to minimize the side effects? Nothing
5) did you start off at the max dose, or did you gradually work your way up to the max dose? Started w/ max dose.
6) do the side effects persist or does your body adjust to it and normalize? If so, how long did it take? Stayed the same.
7) Did Tykerb help shrink your mets? How long did it take to have an effect and what kind of shrinkage did you see? For me it kept me stable with the mets that I had for 3 months.

Any advice, recommendations and personal experiences are appreciated. I hope that this is a good combo for you. I found it to be so easy.

Love, Hope, Peace, Carolyn

Re: herceptin + tykerb (no xeloda)
 

I am on Tykerb/Herceptin. I was on Tykerb/Xeloda for 18 months. After progression, we dropped Xeloda and added Herceptin. I have been on it 10 months.

I get Herceptin every 3 weeks. After adding Herceptin, we had to drop my Tykerb from 5 pills (1250mg) to 4 pills (1000mg) due to the diarrhea side effect.

My diarrhea got better after that for about 7 months, but it has since become a cyclical thing - I get about 7-8 days of normalcy and then I get a bout for apx 24 hours that has to be controlled with immodium, then I have a 24-36 hrs of constipation followed by the week of normalcy and then the cycle starts again. I do notice that it is also affected adversly by undisciplined diet.

I have remained stable on this combo with the exception of one tiny brain met that we zapped in June.

Re: herceptin + tykerb (no xeloda)
 

Sandra, Thanks for reporting the problem you had with your fingers, toes and nails. I have had the same thing happen but didn't associate it with Tykerb---now I know it probably is the root cause.

Re: herceptin + tykerb (no xeloda)
 

It's interesting about the fingers and toes. I only had those problems on Tykerb/Xeloda, but they went away within a few months of dropping Xeloda (hand/foot syndrome).

I don't have them now on Ty/Herc...

Re: herceptin + tykerb (no xeloda)
 

Hi Darlene - are you still on the Herceptin/Tykerb combo, and how are you doing? I looked online at Suki products and didn't realize there are so many although none is called "oil." What is the exact name of the one you used? Many thanks, Karen

Re: herceptin + tykerb (no xeloda)
 

Are there heart concerns taking Tykerb and Herceptin together?
How is everyone who is on this combo doing?

Re: herceptin + tykerb (no xeloda)
 

I haven't had any heart concerns... I may be wrong but I believe that they expect those more in patients over 60, I am 50 and my heart appears to be unaffected.

Re: herceptin + tykerb (no xeloda)
 

I have only been on the Herceptin/Tykerb for 6 weeks, 1250 a day of Tykerb, and I am soon to be 58. No heart problems and I have been on Herceptin for 6+ years.
Actually, i feel better than I have in some time on this combo.

I found the SUKI oil online at the cosmetics kitchen...it cleared the rash in no time.

Hope this helps.

Re: herceptin + tykerb (no xeloda)
 

I started on a Tykerb and Xeloda program about five weeks ago. After two weeks I had to stop because of the diarrea and mouth sores. Long story short my husband saw that something was wrong and called the ambulance. I was in a comma for three days and know nothing of going to the emergency room and hospital. My ammonia count was 150. If it wasn't for my husbands quick action I wouldn't be here today. I had just come from the clinc that day where all they want to do is hydrate when something is wrong.
So have someone watch you closely. If you become disoriented go to the hospital ASAP.

I came down with breast cancer in 2003. Had lempectomy, chemo and radiation. Then a year on Hercesptin. I was clear until July of last year and then my tumer count stated going up. It had spread to my liver and lung.Took Taxol and the tumor count came down from 1300 to 57. Then started going back up 259. So then the Doctor stated me on Tykerb and Xeloda. That just about took my life. So now I just started on Tykerb only. 1250mg. I have been on Herceptin for nine months already.

Miriam

Re: herceptin + tykerb (no xeloda)
 

taking Tykerb 1500mg daily since may 08 no significant side effects occasionly diarrhea. A little tired. heart function numbers going down but not in bad range. Maybe the combination is the problem. I was told by trial doc that tykerb crossed the blood brain barrier while herceptin did not. Does anyone know if this is true? Best to all Cecw

Re: herceptin + tykerb (no xeloda)
 

Cecw,
That is a long time to be on a Med. What are your results. Is it doing any good or just making the Drug Companies richer. Tykerb cost is outrageous.

Miram

Re: herceptin + tykerb (no xeloda)
 

Miriam don't know how its working. part of alto trial Hercptin with Tykerb in different combinations or either one alone as first line treatment so drug is free. Had masectomy 2 10 09 her2+++ 5 of 14 lymph nodes positive. Everyone on this site seems to be getting scans. I've never had any how do they know it's not already spread? Docs tell me it isn't anywhere else. How do they know? When do people usually get their first scan? Best Cecw

Re: herceptin + tykerb (no xeloda)
 

Cecw,
I've been on Herceptin since January with Taxol. Worked great until my tumor count went down to 57 then started back up nearing last Taxol treatment. So the Doctor started me on Tykerb and Xeloda which was a disaster. So now it's just Herceptin and Tykerb. I get a scan every three months.

Miram

Re: herceptin + tykerb (no xeloda)
 

I haven't had any side affects to Herceptin. On Tykerb I had over freq.bathroom breaks w/severe diaria no matter what I did I couldn't find balance and didn't want to leave home.
I read about diphen/atrop and wanted to know how many pills to take they gave me a prescription to help me gain control. After a month or so I learned taking one the first five min. I woke up and than taking another five min. after taking the Tykerb I didn't have too be in the bathroom frequently anymore. Hugs. I hope that you do not experience those problems on Tykerb.Hugs

Re: herceptin + tykerb (no xeloda)
 

Hezzy,

Thank you for posting. I have had diarrhea really bad this last cyle of Xeloda and Tykerb. I am going to try your suggestion. I am fine until I come off of the Xeloda. In fact, I am constipated some. The morning I wake up and take my Tykerb alone, I am going to take the diarrhea pill five minutes after I take the Tykerb.

Amelia

Re: herceptin + tykerb (no xeloda)
 

I have been on Tykerb since December 2010. No xeloda. I have also been on herceptin since July 2007. So far so good with Tykerb. I take 5 pills a day. It has reduced the tumor on my chest wall significantly. I go to the bathroom more frequently now but it sure beats the opposite conddition. I can always take immodium but haven't had the need to do that SO FAR. I have however, noticed that my mouth can get very dry. I don't know if this is related but I think I have yet another UTI. Has anyone else had a recurrent problem with uti's and found a solution besides antibiotics to control them?
Be well!

Re: herceptin + tykerb (no xeloda)
 

I've been on herceptin & tykerb since Aug. 2010. While on chemo (TCH), I had severe diarrhea & stomach cramps which resulted in my doctor suspending the tykerb until chemo was complete. I resumed tykerb 1000mg daily in January and have been doing well. This time around I do not have the diarrhea or stomach aches that occurred while on chemo. I'm scheduled to be on these drugs through end of July 2011.

Re: herceptin + tykerb (no xeloda)
 

Wow there's alot to know about taking Tykerb! I just started it a week ago and have had many trips to the bathroom! I go tomorrow for my Herceptin and it seems to be worse when I take them together.I have been on and off Herceptin four years now and occasionally have had bathroom issues with it.
My question is does anyone have a burning sensation in your nose? Also, a bunch of zits appeared overnight along my nose, is it a rash or a zit? They are actually sore too.I never have had acne other thatn the occasional zit, there a probably 5!And they are knid of white.
Thanks for all your posts,It's good to hear I'm not the only one!

Re: herceptin + tykerb (no xeloda)
 

There is a soap that might help you with the rash, Cephalon, I found it at the local grocery store, the chemo nurses recommended it. It helped me.

I started Herceptin while still doing chemo in 2008, Tykerb was added a year later. Minimal problems, diahrea on rare occasions and the lovely rash. Started with 1000 mg. once a day, split the dosage into twice a day, 500 mg. each, to help with the rash.

Recently had to stay with family out of town for 4 months, going back and forth between 2 houses. Did not have the cephalon soap and ended up with the rash coming back strong. Back home now and using the soap again and rash is improving again.

Martha

Re: herceptin + tykerb (no xeloda)
 

I am on Tykerb (and Herceptin and Abraxane) and and I get a sore nose with dry, broken skin. It has developed into an infection on at least 3 occasions and I have needed antibiotics for it. I also have a break for a few dys from the Tykerb which seems to work.
Trish

Re: herceptin + tykerb (no xeloda)
 

I just joined today. Was looking for something else, but can give you my experience with Tykerb. Started chemo with Docetaxel and Carboplatin in combinations with Trastuzumab and Lapatinib (Tykerb) last Aug of 2009. I was taking 4 pills a day and at around the end of the first week, I was very sick to stomach/diarrhea. I was asked to take 3. Didn't have any more nausea, but continued to have diarrhea to the point of getting a really sore butt, found that using the donut hole cushion I had really helped. I got through it..one whole years worth of horse pills. In time like everything else your body makes adjustments. It was something that I could quit at any time, but if it will help me and anyone else with this problem... I'm glad I did it.

Re: herceptin + tykerb (no xeloda)
 

mz.quail,

Welcome to our group. I am currently only taking Tykerb. I would really like to take Herceptin with it.

Amelia

Re: herceptin + tykerb (no xeloda)
 

I've made it three months now on the Tykerb/Herceptin and I'm doing great! I had a hard time getting used to it but now the stomach issues have subsided for the most part.I started taking a probiotic and that really seemed to help me.I have learned alot from reading other womans posts and hope this can help somone else too!Let's pray the lung met is shrinking and I can continue on this regimin after my scan mext month!I use a tea tree oil cleanser for my beakouts now and that seems to work great too!

Re: herceptin + tykerb (no xeloda)
 

I know this may be unimportant, but have to ask. Will hair grow back while on the herceptin/tykerb combo? If there is already an answer out there, sorry for duplicating. Thank you for any input you have.

Re: herceptin + tykerb (no xeloda)
 

I am on Xel/Tyk/Herc. I have very thick hair now. No hair loss, even with the chemo.
Karen

Re: herceptin + tykerb (no xeloda)
 

I am on Tykerb/Herceptin combo for neoadjuvent therapy. I'm currently taking 1000 mg of Tykerb and getting Herceptin every 3 weeks. I just completed 12 weeks and have 12 more to go before surgery. I've had occasional diarrhea, but nothing debilitating. I did have some other symptoms, such as fatigue, weight gain, and breaking hair, but recently learned that my thyroid meds were being supressed by the Tykerb. Since ajusting the levoxyl, I noticed that my fatigue is not as sever and for a change, I even lost 2 lbs on my last weigh in. All in all, my symptoms have been minimal.

Re: herceptin + tykerb (no xeloda)
 

I'm glad I found this thread. I just did day 2 of Tykerb/Herceptin (no Xeloda). So far it doesn't seem too bad. But I want to take the Tykerb (1,000 mg) at night so that if there's diarrhea I can just deal with it in the morning. The nurse said not to switch too abruptly--like only advance the time by about 90 minutes a day. The first dose was in the clinic at 10 am, so it will take awhile at that rate to move to 10 at night, but I think I'll like that better.

Re: herceptin + tykerb (no xeloda)
 

Amy - I switched my Tykerb to night one day after taking in in the morning without any trouble. I took it in the morning then the following morning didn't take it then took it before bed that night. I am taking 4 tablets (100mg) now and don't get any diarrhoea but I have a looser motion first thing in the morning (I am also on Xeloda 7 tabs).
I hope this is a great treatment for you.
Amanda x

Re: herceptin + tykerb (no xeloda)
 

Thanks, Amanda.

Since it's part of a study and I have to log the date, time, and # of pills I think I'll be obedient (though that's never my first inclination. I constantly question authority.) I just have to watch for that "one hour before eating and/or two hours after" rule. I'm not usually vigilant about mealtimes.

Re: herceptin + tykerb (no xeloda)
 

Hi. Well I will tell you that I do have permanent heart damage due to, especially, herceptin. Not so bad but a big change in the the muscle itself. So no more Herceptin for this girl. MUGA scans are done every 3 months, did you have that?

Re: herceptin + tykerb (no xeloda)
 

I have been on a drug trial for neoadjuvant therapy. I get Herceptin infusion every 3 weeks and take 4 tablets of Tykerb in the morning on an empty stomach. I've had very little problems with it. I started off with a tumor that measured >7cm by mammogram and ultrasound (>9 by MRI) and IBC. By the end of the first three weeks of treatment, my tumor had shrunk to half. When I had my 12 week mammogram/ultrasound, my tumor was 0.8 cm and too small for them to biopsy for the study. I'm now nearing the 24 wk trial and will be having surgery on July 3rd. I'll then find out if anything remains. I don't know how other patients are doing on this particular study, but so far my results have made my oncologist very happy (and me, of course).

Re: herceptin + tykerb (no xeloda)
 

Basilic,

There's at least one other member of this forum on that same study.

I just started it Monday. I don't like taking it in the morning. They told me to change gradually to night, and I have been doing that. I think I'll like it better at bed time.

I learned it makes me dizzy and gives me a belly ache if I take Tykerb on a very empty stomach. It's better if I eat a little about 2 hours before.

I'd be very happy if it got me to NED, or even if it just kept me stable. That's my hope.

Re: herceptin + tykerb (no xeloda)
 

The biggest issue I had with Tykerb was when I realized it was partially blocking the levoxyl I was taking at the same time. I tried moving the levoxyl to bedtime, but found that I wasn't disciplined enough to remember no to eat after a certain time, so my endocrinologist raised my levoxyl a bit to compensate. As far as GI issues go, I probably had looser stools in the beginning but now it rarely happens. As a result, I have lots of Imodium left over from that big bottle I thought I would need.

Re: herceptin + tykerb (no xeloda)
 

Anyone with blurry vision issues and/or severe weakness in legs on Tykerb and Herceptin? I was on Herceptin for about a year, went to Tykerb and Xeloda about four months ago, now on Tykerb and Herceptin and no Xeloda for about the last month. I'm having a spine MRI Tuesday to see if it's the cancer in my spine or compression fracture I already have placing stress on my spinal chord. I wondered if anyone else might have experienced the weakness or blurry vision issues?

Re: herceptin + tykerb (no xeloda)
 

Krissi,
I did have blurry vision and that ended up being cateracts that had formed as a result of all the steroids given during my chemo. When I mentioned having problems with my vision, my onc. referred me to an opthomologist. They would not do the surgery until I completed the Tykerb because they don't know how it affects the healing process. They said they would have gone ahead if I had only been on Herceptin. Now I see better than ever.

I also had leg weakness that I attributed to low potassium. I had to take supplements during the time I took the tykerb because of the diarrhea. You may ask you dr to check that level. It could be simple to manage.

Good luck. I hope you are feeling better soon.
Sandra