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Old 05-03-2007, 02:28 AM   #1
Belinda
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Thank you, again Lani. Your article, and now your interperetation of for us, has helped me pull through a dark post-chemo week. This seems to be the best news going at the moment, and I agree, anything we can do to push it we should. I agree that Gentech needs to get on the bandwagon - it is heartening that the initial research is independent, but to get the funding needed to make this thing really move along will need the drug companies to get on board. And getting trials takes soooooo long... Was there anyone involved in the early Herceptin days? What worked then?


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  • Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
  • Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
  • May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
    Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
  • March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
  • Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
  • January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
  • Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
  • Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
  • ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
  • Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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Old 05-03-2007, 03:24 AM   #2
Christine MH-UK
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Any idea of cost?

I was just wondering how much this combination might cost if it works. Does anyone have any idea?

I saved up for herceptin and would not have gotten it under my circumstances if I had not prepared for it financially, so I always think about this. Ironically, about 1/3 of the way through my treatment, the UK National Health Service decided to fund herceptin, including my herceptin, but I wouldn't have gotten it if I hadn't already been on it.

It might also be useful for people to know so they can be prepared for their copayments.

If I never need this combination then at least I will be well prepared for my old age.
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Old 05-03-2007, 06:21 AM   #3
MJo
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As someone who had to stop Herceptin before 12 months due to heart issues, I will be very interested in any side effects on the heart. Otherwise, this is wonderful news.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 05-03-2007, 08:32 AM   #4
Lani
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Belinda

I believe there is a book sometimes available on Amazon about the making of herceptin, which chronicals the history of the discovery, the difficulties finding the right target population to treat (which almost stymied its development) and the parties involved (including Dr. Slamon, of course).

I believe Lily Samuels Tartikoff was terribly helpful in fund-raising (she got Revlon involved) for the early stages of the research.

I haven't read it myself to see how the ideas generated by Dr. Slamon got developed by Genentech into an approvable drug.

Anyone out there who read it?
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Old 05-03-2007, 10:14 AM   #5
saleboat
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I read the book and the story is pretty amazing. Scary that Herceptin almost didn't get out of the development phase. One of the take-aways from the book was the power of the advocacy community-- they really rallied to get as many women as possible included in the adjuvent trials, with the well-founded hunch that the drug would be a wonder.

Given the premium that these drugs are commanding, I can imagine that the business development people are all to happy to take bets now on targeted therapy-- at the time Herceptin was developed, it really was out-of-the-box thinking.

Here's a link to the book:
http://www.amazon.com/Her-2-Making-H...8212264&sr=8-1

Jen
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dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
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Old 05-03-2007, 10:28 AM   #6
Gerri
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I read it (twice) when I began my journey into the world of BC. The name of the book is HER-2: The making of Herceptin, a revolutionary treatment for Breast Cancer, written by Robert Bazell. I found it at my public library. Now with chemo brain in full mode it is hard for me to remember all the specifics but I will try to give a brief summary.

Lily Tartikoff was instrumental in securing the initial funding for Dr. Slamon’s research. He had treated her husband Brandon Tartikoff for Hodgkin’s disease and she was so grateful, that she made it her mission to get him the money he needed to move his research forward (he was having trouble getting funding). She approached the CEO of REVLON and challenged him to do more for women than just make lipstick. The fundraising “Fire & Ice Ball” and the Revlon Run/Walk for Women were a result of this challenge.

The book details the many years of research that went into the discovery of the HER-2 protein and the making of Herceptin. It also tells of how the pharmaceutical companies finally came on board. Most of all, it shows the relentless dedication and passion that Dr. Slamon put into this research, not to mention the brave women who participated in the initial trials.
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Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
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