herceptin + tykerb (no xeloda) - Page 2

Joan S. · 02-05-2011, 06:59 AM

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!

msleslie · 02-22-2011, 10:58 AM

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.

05-25-2011, 05:55 PM

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!

05-28-2011, 10:46 PM

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

Trish · 05-30-2011, 03:05 AM

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

mz.quail · 07-07-2011, 10:35 PM

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.

schoolteacher · 07-15-2011, 07:56 AM

mz.quail,

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

Amelia

Raquel · 08-07-2011, 05:30 AM

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!

qpdawlsmom · 10-20-2011, 09:12 AM

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.

KDR · 10-20-2011, 06:11 PM

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

Basilic · 04-15-2012, 02:51 PM

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.

Mtngrl · 06-12-2012, 08:10 PM

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.

Mandamoo · 06-12-2012, 08:24 PM

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

Mtngrl · 06-12-2012, 08:30 PM

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.

Carrielynn · 06-15-2012, 03:11 PM

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?

Basilic · 06-17-2012, 08:53 AM

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).

Mtngrl · 06-17-2012, 02:00 PM

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.

Basilic · 06-17-2012, 02:40 PM

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.

Kmswilson · 06-17-2012, 03:39 PM

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?

Sandra in GA · 06-24-2012, 08:44 AM

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