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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.

08-01-2009, 10:50 AM	#4
vlcarr Senior Member Join Date: Jun 2009 Posts: 343	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.