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Old 09-17-2006, 07:29 PM   #1
Joe
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Questions From Skibunny

Hi! I am new to this. I have some questions, but do not know how to send them so they are seen by others and can be answered. I will introduce myself. I have a recurrence of DCIS in the same breast after 2 years. I was diagnosed with DCIS with microinvasion in December 2003. I had a lumpectomy, reexcision, sentinal node biopsy with negative nodes and radiation which I finished in May 2004. I am ER-,PR- and HER2+ so I was not a candidate for Tamoxifin or Arimidex. I was not incvasive so I did not have chemotherapy. My recurrence was found on an MRI in July, 2006. It is non invasive in the same spot as before and my hormone receptors are the same as before. I was told I need to have a mastectomy.I am eligible for a Phase I vaccine study but am worried about the risks. The vaccinne is designed to increase the immune system's response to tumors, but it may also encourage the entire system to attack normal healthy cells, which could lead to autoimmune disease. The vaccine in this reaserch trial is designed to teach the immune system to recognize and attack only DCIS cells. Some of the DCIS cells are similar to cells found on normal tissue including the heart muscle. It is possible the immune system could attack the normal cells leading to damage of normal tissues such as the heart. Only 10 people have received this vaccine and there have not been any side effects.

My questions are:
Has anyone been on a clinical trial where they developed autoimmune disease?
Given that my cancer recurred in such a short period of time, what is the liklihood of it returning again after I have a mastectomy?
Should I try to have my body develop antibodies for the HER2 protein now rather than later if the cancer recurs again?
Has anyone had any side effects form HER2 peptide vaccines?
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Last edited by Joe; 09-17-2006 at 07:42 PM..
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Old 09-17-2006, 07:59 PM   #2
Christine
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Where is the trial located? There are many underway around the country and they are all different. Many of our members have completed the vaccine trials at the University of Washington and several have completed the Walter Reed / Windber Medical Center trials. None have reported any adverse results.

Has your onc suggested Herceptin? You don't seem to mention if you were treated with it.

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Old 09-17-2006, 08:25 PM   #3
skibunny
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Hi Christine. Thank you for responding.It took me a while to figure out how to find where to read what you said. The trial is at the University of Pennsylvania. Since I have non invasive DCIS I am not given chemotherapy or Herceptin. The cliical trial I am referring to is "Vaccine Therapy in Treating Patients who are Undergoing Surgery for DCIS of the Breast". It is ClinicalTrials.govIdentifier NCT00107211. It is also called "AHER-2/neu pulsed Dc1 vaccine for patients with DCIS.
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Old 09-18-2006, 05:02 PM   #4
Christine
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I reviewed the trial and can see no problems. If your onc recommends it, I would go for it.

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Old 09-18-2006, 07:36 PM   #5
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Dear Christine,
Thank you for reviewing the trial. My oncologist is one of the co investigators on the trial. He says it is experimental and there is no known long term value. He doesn't think it will harm me, and it may have benefits. My main concerns are developing an auto immune disease and/or my immune system attacking normal cells leading to damage of normal tissues such as the heart. I wanted to know if anyone on any other clinical trials where antibodies to HER2+ were developed had an autoimmune problem or heart problem from the vaccine.

I really think I should be a part of this study as it is being done before the cancer is invasive, and logically if antibodies develop, they should prevent future recurrence.

There is an article in W Magazine called "The Breast Defense" a friend of mine emailed me today about a study being done at Memorial Sloan-Kettering by Larry Norton where they are doing targeted therapies trying to unmask the immune system. Do you know anything about this study?

Thank you so much for your support.

Skibunny
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