Tuesday, January 6, 2009

Hello All,

Hope this new blog finds you all well, happy, healthy, and enjoying each and every moment of life.

Again, thank you all for taking the time to read the blog and respond.

So, the next chapter to this saga. Today's blog will share a challenge we have been experiencing.
For those of you who already know this type of information, I am sorry to repeat it. For those who do not...you might find this interesting and learn a little more about the process.

When someone is dx with cancer and all or part of a tumor is removed, it is biopsied. This is done to evaluate the cells involved. It is much more detailed but for the purposes of my entry, this is the most you need to know. When pathologists look at Breast Cancer Cells, they are primarily looking at 3 types of receptors-biomarkers.
1. Her2-An oncogene that, when overexpressed, leads to more cell growth.
2. ER (estrogen)-female sex hormone produced by ovaries, adrenal glands, placenta, and fat.
3. PR (progesterone)-hormone produced by the ovary involved in the normal menstrual
cycle.

When I was initially dx, the pathology on my cancer came back as HER2+ (sort of), ER+, and PR+. Prior to 1995, it was extremely detrimental to be HER2+. In 1995, a breakthrough drug called Herceptin was approved by the FDA and found to be highly effective in treating Her2+ patients. It pretty much leveled if not improved the playing field for those with HER2+ vs. HER2- breast cancer.

When the initial breast cancer was biopsied in 2006 (ICH-stands for Immunohistochemistry), the first initial test came back HER2-, ER/PR+. My oncologist at the time (Dr. Robert) who was originally a pathologist questioned this and sent my specimen for additional evaluations. This was called a FISH. The standard for determining Her2 status based on the fish is, anything less than 1.8 is considered Her2-. Anything over 2.2 is considered Her2+. Anything in between is a "gray/complex" area. Mine came back as 2.0. To be on the safe side (getting Herceptin doesn't hurt me if I am truly HER2- but could drastically help me if Her2+) Dr. Robert considered this Her2+ and treated me as such. ER/PR was not in question.

So, when the cancer came back in the bone, they again performed a biopsy and evaluated the cells/abnormal growth. Apparently biopsy of bone is extremely challenging as the chemicals they use to stain also destroys the bone, making it hard to accurately biopsy. Again, they performed the biopsy using the ICH method. Findings-HER2-, ER-, and PR+. Dr. Shea (local oncologist) questioned the validity of these results and requested a second opinion at Dana Farber. So, we had to request the original "block" of cancer from Virginia as well as send the new bone "block." Unfortunately, Dana Farber was not clear as to what they were being asked to assess. They simply repeated the ICH that was done in both VA & NH. Their findings were Her2-, ER/PR+ (this was consistent with the initial cancer markers). The hope and request was to redo the FISH on the VA-original specimen to check the validity of the Her2 status. Apparently the FISH is a highly specialized test and in most cases is sent to a special lab. I spoke with Dr. Nancy Lin of Dana Farber yesterday to discuss this pathology. She now understands that we were wanting the original specimen to be FISH assessed. She informed me that she would attempt to make arrangements to either send the initial "block" from VA to the special lab or if the "block" has been returned to VA ("tumor" blocks are kept where removed and originally biopsied) request that it be sent out for special FISH testing. Dr. Lin informed me that this process would take about 2 weeks. We were hoping for these results prior to this Thursday (1/8) as I am scheduled for tx. No such luck. They will give me Herceptin but really want to make sure that it is indicated for the next tx. Dr. Lin assured me that this does not change my current course of treatment with the exception that if I am truly Her2-, I would no longer be a candidate for Herceptin or Tykerb (new HER2 drug that passes bld. brain barrier-just approved by FDA in March 2007). Apparently these medications would not contribute to my cancer positively or negatively. I will keep you all posted on what we find out.

The second marker we are assessing, is what as known as CA 27-29. We never evaluated this marker the first time around, and from what I have learned from other individuals in my position, theirs were not tested either. So, CA 27-29 is a specific breast cancer marker. We will be evaluating this marker monthly to evaluate whether the current course of treatment is working. We will evaluate this marker on a monthly basis for the next 3 months. Normal is 38. My initial reading was 188. When I had lab work on 12/26, it rose a little to 208. I discussed this with Dr. Lin. Dr. Lin informed me that it was normal for these numbers to rise before they fall. She also informed me that it usually takes hormonal therapy 2-3 months to begin working. So we will just need to give it some time.

Well, I guess this is all for today. Believe it or not, I still have a little more to share with you all to "catch" you up to date. My hope is by this w/e we will be caught up and able to share during the current time frame.

Take care and I look forward to your responses.

Lisa

8 comments:

  1. Hi Lisa. Your OK Family Here! We continue to learn so much through your blogs. Understand your frustration about dealing with multiple doctors and facilities. You become your own case manager and you've worked in the field! You know the questions to ask and sometimes you have to be a pebble in the shoe. I was much more familiar with the cancer-marker test information you included. The marker for mom was a CA-125 and the results of this each time let us know if the treatment was working. Hers did go up before it came down; this is normal. It has to give your body a good zap before it will show up in the numbers.
    It sounds as if they are trying to zero in on exactly what type of cancer it is for the best treatment. We are hoping this will be very soon as we know you are.
    We are visualizing everything you are doing is ridding your body of cancer cells and leaving good healthy tissue and bone in its place. We are also visualizing you free of any pain and discomfort. Hope the exercise is giving you renewed energy. Sure love you and wish you a great day! Love, Your OK Family

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  2. Hi Lisa,
    This is Barb again from Lake Ann. (It used to be Traverse City until we moved November 6.) I used to teach at St. Francis with your mom, and met you at different times at your parent's home.
    I am so proud of you for the way you are handling your cancer. You are so knowledgeable about the situation. (All I know about health problems and treatments is what I see on "House.") However, if must be frustrating, and you must be in pain, and for that I am praying for you. I found a prayer in NUMBERS in which God tells Moses the priests should say over their people. This is what I pray for you each morning: "The Lord bless and keep you. The Lord let his face shine upon you, and be gracious to you. The Lord look upon you kindly and give you peace."
    Best wishes from Michigan.

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  3. Lisa,
    The former CHDO "e-mail tree" reached me yesterday with your blog address and I got caught up quick! I have to say with all your knowledge and understanding of this complex stuff involving your diagnosis and treatment you sound so STRONG and BRAVE! You sound like a woman out to win and Alayna and Khaya are so lucky to have a mom like you as their example in the world. I'll be following along now, sending all the positive, "we're in this to win" energy I can out to the universe and straight to you. Manuel, Isabel and Ruben will also be praying hard for you and the family (Hi Darrell!) We miss you guys. Much love,

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  4. Thanks for the continuing updates, Lisa! You have no idea how much it helps us that aren't right there with you to get an "inside" ear on all of this!

    Thinking of you and sending all of our love!

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  5. Hi Lisa and Family,
    I hope this note finds you in good spirits. I have been following your blog from the beginning but just figured out how to post comments. I am so happy to be able to be in contact with you! I think about you, Darrell, and the girls all of time. Your strength, courage, and positive thinking continues to amaze and inspire me. All of us at the Children's Center are sending you love, prayers, and positive energy! Please give Alayna happy birthday wishes and a big hug from me. I'll write again soon.
    Love,
    Christine (a.k.a. Miss Peluso)

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  6. I understand that some people have had problems posting messages unless they have a Google account. The posting settings have now been revised so that anyone can post. This my test for the settings. The easiest way to do this is to use the Name/URL (you only need to type in your name, leave URL blank) or anonymous profile.

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  7. Hi Lisa - wow, we cannot appreciate enuf all you are doing for yourself and your family. All of the acitivities and treatments sure are leading to a positive direction - rid that cancer! The accupuncture sounds good so far-
    it is unfamiliar to us - we like reding all of the treatment results. Congratulations on the tests with so much better numbers - that must make you feel good!!! Better and best results this week. Love and support to you. Love, Liz and Dick

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