| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-12-2007, 08:25 PM
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#1
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Ok People, "The Rash" is really going wild!
Day 10 and it's ALL over my face, neck, right upper arm, across my shoulders, and is starting down the left arm and my upper abdomen!
It's not really uncomfortable, only slightly warm and itchy, but looks like H---!
Oh well, I wore a lot of makeup today when I went shopping and my sis, god love her, said I looked fine!
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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05-12-2007, 08:31 PM
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#2
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Herceptin?
Why did you stop Herceptin? Please fill me in. I'm on my second round of Herceptin and Navelbine..I do not want to give up Herceptin!! I believe that am alive because of it...
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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05-12-2007, 09:12 PM
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#3
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Hi Kokky,
I guess I missed something too,Hang in there. BB
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05-13-2007, 06:25 PM
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#4
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Adriana and BB, I stopped Herceptin as it was no longer controlling the mets, even with chemo added. BUT, I had a very long run with it, been on it since 2001. Some here have been on it even longer. I think someone posted that she's into year 8.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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05-14-2007, 11:13 AM
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#5
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Herceptin Is Keeping Addl Mets At Bay
Adriana, and all you incredible Warriors/Survivors,
I've been on Herceptin since '98. Dx in July '95 (age 50) w/4th stage invasive lobular carcinoma + 2 nodes. Mastec, tram flap reconst, 4 Adria, 12 CMF. I figured I was done. Then the hoopla about the Her2 GENE! Thank you Dr. Slamon! And the clinical trials w/Herceptin. Again thank you Dennis and Dr. Pegram. Aug '98 multiple mets into my liver. Taxotere 9 mnths and couldn't take any more. Previous posts explain my journey in detail FYI. I started Herceptin 2 mnths after Taxotere, to be sure Taxotere was working. 8 wk CT scans showed little but some progress on some mets. By Apr 2 out of 3 readiol decided what they were looking at were the dead remains of tumors, cyst-like, filled w/fluid, necratic tissue. They declared me in cautious remission. I now declare myself a Survivor, w/ moments of fear. I am NED (no evidence of disease).
I have read THE DIVIDED MIND by Dr. John Sarno. It is a slow read but profound speaking of the mind/body connection. We all have a reservoir of rage at our core that we carry around unconsciously from childhood. The primitive part of the brain, the Id, never forgets ANYTHING. It remembers it AS IF IT HAPPENED YESTERDAY! So the heal, we must not only fix the symtoms but the root cause which dwells in our emotions. We must dig deep, excavate all the junk from childhood on, experience it and then kick it to Kingdom Come! We survived all that anger, resentment, blame, guilt, remorse, inability to forgive! We mustn't let it hound us anymore. As we consciously choose to recognize the connection between the anxiety of what was AND WHAT "COULD BE" (which is huge for us cancer veterans) we also must CONSCIOUSLY "CHOOSE" to divorce ourselves from that negativity.
WHAT YOU FOCUS ON ALL DAY WILL DETERMINE THE OUTCOME. We are magnetic fields of ENERGY. We attract, and call to us, LIKE ENERGY from the Universe. What we emit (positive or negative) is transmitted out on frequency waves and sensed and responded to by others, and by the Universe.
I have my moments every day. I work through them. I deep breath. Meditate. Consciously choose to connect with my Spiritual Essence, which I call my Soul. I believe we are each BODY, MIND AND SOUL. The Soul speaks to you through your Inner Voice. Listen for it. Do not mistake your fearful thoughts as anything more than human nature at work, freaking out at the possibilities. I decided long ago, back in '95, to see myself as a Survivor. Far into the future. In vivid detail. Celebrating at my grandchild's wedding. And I had no grandchildren in '95. (I now have 5!) I will be here to meet and greet them and be a memorable part of their lives. I will finish the book I have been working on for 5 yrs about my cancer experience and the Life Lessons and Secrets of the Universe I have found along the path.
Fear and faith cannot occupy the same space. Remember that. I remind myself regularly of that, and the fact that I am personally empowered to call my desired destiny to me.
We can focus on a pain and let our minds go wild. I've done that. Until someone or Something reminds me to get in touch with my Spiritual Essence. That is empowering. You can heal yourself. You can concentrate all your attn on where you fear your cancer is going to come back. You are a self-prophisizing entity. So be careful what you focus upon! What you truly WANT vs what you deeply FEAR.
I am here for anyone who needs a hand, and I know you are there for me if I'm in a shaky place. I thank God for it all. For you, and this site, for my Family and all my blessings. I try to live with a smile on my face, full of joy, love, serenity, kindness, compassion, generosity of Spirit, appreciation, awe at te beauty that surrounds us, daily humble gratitude to God, harmony (staying in sync with Life and the Universe) and all that IS! I try to stay strong, brave, determined, resolute and passionate about remaining NED/STABLE!! Like Olympic athletes who envision their victory and work each day to achieve it. That's what I wish for you. With all my heart. And Soul. Sending loving, healing ENERGY to you and all the awesome ladies that visit this site. God bless you!! ANDI
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