herceptin + tykerb (no xeloda)

vlcarr · 08-01-2009, 10:50 AM

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.

08-04-2009, 06:47 PM

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

Carolyns · 08-04-2009, 07:21 PM

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

Nancy L · 08-09-2009, 09:52 AM

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.