Wednesday, March 9, 2011

Notes from the 2nd Opinion

I have a lot to consider today and need some space.  I appreciate all the calls and emails and texts wanting to find out what the next step will be but I don't know yet.  In an effort to give you the information we received yesterday, I am copying and pasting Rachelle's notes below.  I think we are leaning toward NYU but again I have some work to do today so please be patient with me.  I love you all and thank you for following my every move to demonstrate your support for me.  xo, E
Dr. Seidman - MSK - March 8th, 2011


CA = cancer
  • 5% of breast CA happens in women < 40 years of age
  • 5-10% of breast CA present with metastatic disease at time of diagnosis
  • 20-25% of all breast CA is HER2 +
  • Randomized trials have produced results that inform current treatment regimens: taxanes (Taxol/Paclitaxel, Taxotece/Docetaxel)
  • Carboplatin shown to have a synergistic affect of taxanes in combination with Herceptin
  • Partial response = tumor shrinkage vs. complete response = tumor eradication 
  • < 5% of scans ever become completely normal (meaning no cancer anywhere)
  • Most commonly tumors shrink = remission - then chemo can be stopped while Herceptin is continued indefinitely (keeps CA in remission)
  • Remember: tons of research around HER 2+ CA - many new agents in Phase III drug trials - a lot to look forward to!
  • Be on look-out for: TDM1 (immunocongugate/"smart bomb")
  • Even if getting treatment @ NYU - can still be apart of new studies @ MSK if one comes along in the future
  • Recommends baseline MRI of spine - will also follow bone scans
  • Will continue to work with Dr. Volm is choose to receive treatment @ NYU
  • Recommends Zometa and XGeva for bone strengthening to be given in combination with treatments (minimizes pain, risk of fractures, etc)

Authors of studies:
  1. Nicholas Robert - benefit of adding Carboplatin to treatment regimen
  2. Edith Perez - benefit of weekly schedule dosing of chemo
Treatment: Abraxane Vs. Taxol (both are taxanes)

  • FDA approved new version of Taxol = nanopartical albumin bound (meaning protein coated instead of lipid coated)
  • Avoids allergic reactions to drug because the solvent has changed - so if used alone don't need premeds (antihistamine & steroids) - However will be used in combination with Carboplatin and therefore premeds must be used regardless 
  • Published in 2010 @ MSK by Dr. Seidman
  • Measure its affect after 3 months with PET scan (same as Taxol)
Chemo side effects:
  • Chemo affects not only CA cells but other cells in your body that grow and divide rapidly (hair, nails, bone marrow (white and red blood cells)
  • 3-5% chance of getting an infection because of decrease in WBCs
  • 1% chance of being hospitalized from a serious infection caused by decreased WBCs
  • Young people have less risk for chemo induced anemia (2% chance might need blood transfusion for severe anemia)
  • Anemia causes fatigue (can expect mild fatigue)
  • Temporary decrease in platelets is very low with these chemo agents - "very low chance of bleeding problems"
  • Very mild chance of nausea (none of these agents are specifically nausea inducing)
  • Muscle/joint aches initially - for which you can take either Tylenol or Ibuprofen
Premedication before Chemo: (decreases possible allergic reaction to chemo agents)
  • Antihistamine (Bendadryl)
  • Steroids (one time dose on that day) 
  • Allergies to Carboplatin usually occur around 7-8th dose (7-8th week) and can include: swelling of face and mouth or tightness in chest - Not subtle - will occur immediately and chemo would be shut off and affects reversed in infusion center (low risk for any of this)
Measuring Response to treatment:
  • Scan will plateau when CA has shrunk (tumors will stop changing in size)
  • Scan schedule: 1st yr = scan every 3 months
                                  2nd yr = scan every 4 month
                                  3rd yr = scan every 6 months
  • If Herceptin stops working as effectively (years down the road): Tykerb (Lapatinib) given orally with Herceptin

Dr. Seidman - Oncologist
Doreen - Nurse
Michelle - Secretary

Major differences between providers:

Dr. Volm - NYU
Dr. Seidman - MSK
Will perform physical exam weekly- prior to chemo
Will see you in person twice in next 3 months – (will be followed by nurse Doreen instead)
Weekly treatment for 3 months until repeat PET scan and then taper to 3 weeks on/1 week off
3 weeks of treatment/1 week off starting now
Recommends Powerport placement
Recommends weekly IV placement
Didn’t discuss further MRI studies at first visit
Recommends MRI of lumbar spine to document baseline


  1. Elisa, Go wherever YOU feel most comfortable. That's one of the most important things when choosing the doctor. They all have available to them the same information and studies. I feel like my patients who have seen the "BEST" of the best doctors don't always like their treatment because the doctor is not personable or isn't available to talk to them. Some of my patients don't care if the doctors are personable as long as they are the BEST!! The care ends up being similar so you need to be comfortable.

  2. Elisa,
    My high school friend, Dan Ewen, just sent me a link to your blog. I was diagnosed with stage 3 triple negative breast cancer in September 2010. I live in NY and am being treated at MSKCC. I'm in the midst of treatment right now and would be happy to chat, visit, answer questions, or commiserate anytime (today, in five months, or in a few years).

    You should check out the Young Survival Coalition. It's a group for younger women with breast cancer. The NYC chapter is very active. I spend a lot of time on the message boards -

    Wishing you the best,

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  4. Hello Bond family,

    I'm just read an article detailing your experience fighting cancer. Having a young family myself, I can definitely sympathize with your situation.
    You've probably had your share of advice since being diagnosed. However, as part of a church which emphasizes health I would like to recommend a website which has really changed my life. It's and I would encourage you to read the testimonials there. Many people have had their lives totally turned around. My wife and I have started living the lifestyle encourage there, basically vegan, and it's changed us.

    Your family is in my prayers.
    God bless,

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  6. Hi Ethan and Elisa, I just read the news about your story today from a Chinese newspaper this afternoon. Yes, the story was translated in Chinese on the biggest Chinese newspaper in US. I am touched by both of your positive attitude and energy. Please continue to tell yourself that you will all be fine everyday. The positive faith will bring you positive energy to help defeat the disease. I will send you my sincere blessings to your family everyday.

    best wishes,

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  8. Hi Ethan and Elisa.

    I've read your story on the Internet and also in one our magazine in Serbia (Europe).

    Both of you have energy and positive attitude to fight against cancer.

    I wish your family to overcome all troubles
    and hard times, and to stay forever for a very long time.
    My prayers will be with you
    and may the God gives you to win this battle,
    and to give you health, happiness and joy.

    Wish you all the best.

    Jelena, (Belgrade, Serbia)

  9. No advice from me, just a cyber hug.

  10. Dear Elisa,

    In the early 1990's, my mother-in-law was diagnosed with breast cancer. She was cared for at Northwestern University in Chicago and Dr. Volm was one of her doctor's. I believe he was a Fellow at the time. She adored him and just recently I looked him up for her because she'd wondered where he was these days. I look forward to telling her that he is caring for you. She would say you are in good hands! God Bless you and your family. People you don't know are praying for you and wishing you comfort and peace.

    Kelly Guzek
    Valparaiso, IN

  11. hello!
    I came across your story in the nyt today and am inspired by how positive your tone is in spite of the challenges you are facing. Continue being as positive! Good luck with everything..will keep reading for updates!

  12. Hello!
    I googled Dr. Volm and you're blog came up! I am 34 and was diagnosed with BC in June and am recovering from my double mastectomy that was performed by Dr. Amber Guth, also at NYU. I have my first appt with Dr. Volm on Tuesday. Both of your choices sound top notch. I was also debating between NYU and another hospital and am very pleased with my decision, as I'm sure you will be too. My dad goes to MSK for his stage 4 prostate cancer. Both of us have felt very cared for at these two different hospitals. Good luck with your decision. I wish you and your family all the best.