Clinical Trial. Herceptin w/Rads for Her2+ DCIS.

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DawnCT
DawnCT Member Posts: 143


Hi,


I wasn't sure whether I should post this under radiation or here on the DCIS board but I will try here first.


All the information here has helped me so much during the process of having two surgeries and making decisions.


I recently had my second lumpectomy for an area of DCIS and will begin radiation on Dec 5th.


My oncologist has asked me to participate in a phase 3 clinical trial giving 2 doses of Herceptin during the radiation process. The first dose is 90 mins given before the 1st radiation session. The 2nd dose is for 30 mins at about week 4.


I just wondered what to expect. Will I have any side effects from that first dose of Herceptin? The oncological research coordinator at the hospital said that if there are any side effects that they usually just take place while the patient is there getting the treatment.


I really do want to participate in the trial as it may help others in the future. It is in phase 3 so the treatment shows promise.


Any information that anyone has here would be so appreciated!


Dawn

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited November 2013


    I would repost this in the forum for HER2 positive people ... although your case is very different from someone with HER2+ invasive cancer, the women there would have experience with herceptin and it's side effects, etc.

  • Jelson
    Jelson Member Posts: 1,535
    edited November 2013


    there are several threads on the topic of the trials on this DCIS board. Use the search function on the left side of the page to find the threads. Here is a link to a federal site.


    http://clinicaltrials.gov/ct2/results?term=DCIS+and+HER2+and+Herceptin


    This trial requires 2? or 3? infusions of herceptin - much fewer than the protocol for patients with Her2 and invasive cancer - cumulative side effects should therefore be much much less. You would also not be getting your herceptin at the same time or after chemo which might impact side effects. Your question regarding side effects you might anticipate from first dose is spot on and is something to discuss with your doctor!!!

  • DawnCT
    DawnCT Member Posts: 143
    edited November 2013


    Thank you both! Your responses are both quite helpful!


    Annette -I had not thought of checking the Her2+ positive forum. I will look over there. They should know.


    Jelson - I see you have the same diagnosis as me. It is two infusions. I have a copy of the study in front of me. Yes, I am not anticipating a lot of side effects since it is only those two doses. They gave me a long list of possible side effects but, of course, it was for long term users and not specific to only 2 doses.


    Thanks for pointing out how to search the message boards. I forgot that there was a search specifically for the boards. Silly!


    Thanks again!


    Dawn

  • Oncearunneralwaysarunner
    Oncearunneralwaysarunner Member Posts: 252
    edited November 2013


    Hi Dawn,


    I wanted to share my experience with Herceptin so far. I had my third treatment on Thursday, and it was my first stand alone one. The other two where with chemo. I've had no noticible side effects from it. There is a possibility of an allergic reaction with it and I get two regular strength Tylenol before I start my treatment to prevent anything. I had to stay for observation after my first two treatments in case of a reaction, but that was about it.


    Hope that helps.

  • DawnCT
    DawnCT Member Posts: 143
    edited December 2013


    oncearunner - that really does help. Thank you!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2013

    dawn - you may experience a runny nose, and if you receive the second dose in 30 minutes, you may have some joint aching.

  • shellyg
    shellyg Member Posts: 1
    edited February 2014

    Dawn

    I am new to these boards and I was just diagnosed on 12/20/13 with DCIS and had a lumpectomy on 1/28/14.  I just met with my oncologist today and she also suggested that I could partake in the study.  I had stage 0 DCIS as a stage 2.  The pathology report confirmed the DCIS with clear permimeter and I have a good outlook.  I am to meet with my radiologist for 2/12/14 for my first visit.  I was wondering how your treatments were going?  

    Michelle.

  • rivedeb
    rivedeb Member Posts: 4
    edited March 2014

    Hi Dawn

    I am new diagnosed with DCIS and have just had my first lumpectomy, I am scheduled for another one on 4/10/14 because margins were not clear.

    I am also HER2+ and my doctor would like me to start the clinical trial of Herceptin as well. 


    I wanted to know how you are doing and how you made out with the Herceptin, Radiation and if you are doing the Tamoxifen?

    Please let me know when you have a moment.  I just joined this site and this is my first post.


    Thank you




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