The story of the Alliance started in early March of 2001 when Abigail, who had just turned twenty-one, had run out of conventional options in her battle against head and neck cancer. Her very talented oncologist urged her to try and get the EGFR targeted drug C225 (Erbitux) from small Imclone Systems or Iressa from very large Astra Zeneca. Abigail's cancer cells had a very high EGFR expression and her oncologist strongly felt these drugs had a very significant chance of saving her life.
They lobbied the two pharmaceutical companies with much vigor including getting help from some very influential people. Then they had to work hard and furiously to solicit Congressional help. Abigail launched a media effort that resulted in numerous stories in the press. As tired and weak as she was, Abigail did multiple newspaper and television interviews.
Abigail died on June 9, 2001 as she was trying to gain some strength, when we were finally able to get Abigail into a clinical trial of a third drug (OSI774). The Abigail Alliance was incorporated in the state of Virginia in November of 2001.
The Abigail Alliance represents the family and friends of thousands of patients who have lost an oft-repeated battle: they exhausted all possible treatment for their disease; they knew that a drug existed that could help extend their life; they were ineligible for any clinical trial studying the drug; and the pharmaceutical company sponsoring the drug could not provide an Expanded Use or Treatment IND program to allow them access. The ACCESS Act seks to end this problem. The ACCESS (Access,
Compassion, Care, and Ethics for Seriously Ill Patients) Act, S.1956, is an important step toward making regulatory policy work for dying patients. It allows patients to receive these investigational treatments, with the same important safeguards that are in place for other recipients of the same drugs.
I hope your dad's treatment is going well. He seems to be getting the most up to date treatment and the stats do show that the surgery followed by a combination of chemo with radiotherapy and the use of erbitux offers the best survival rates.
Could you please tell me if the erbitux is taken at the same time as the radio/chemo was carried out? Or was it taken some time afterwards? If so - how long after the chemo/rad?
I have had surgery followed by radio and the option of chemo wasn't given at the time(saving costs I think! - but does it save lives!)
My last treatment was 20 months ago and I was wondering if erbitux can be taken aside from any other treatment. Maybe Dr. Joshi would know?
Good luck to you EC and especially your dad.
cheers Tony K
I was at a meeting recently and have been asking exactly this question. There is no research data on its use in this preventive way; while the theory seems to support giving it to everyone with H & N cancer, randomised clinical trials would be needed to see if it really works. These are early days yet, and there can be troublesome side effects (if you bother to read the small print). Interestingly, when forced to say if they might use it for themselves if they had H&N SCC, several oncologists say they would! It is the first of several new drugs on the way and not all is clear, so the scientific community has to move cautiously as there are cost implications.
Thanks very much for the info Dr. Joshi. Very very interesting.It's a shame that i am now on 3 monthly follow ups because it will be 2 months before I see a consultant again (unless I pay).
Erbitux has been mentioned in the national press just recently too. - things are moving on.
It would be nice for it to be given the momentum that Herceptin seemed to gather in the national press (and rightly so). Given that survival rates are quite abit lower for head/neck cancers there seems to be a good case for more widespread use in the NHS.
cheers - Tony K
These two studies show a benefit:
- Erbitux® Plus Chemotherapy and Radiation Therapy Promising in Head and Neck Cancer (2nd March 2006)
According to results recently published in the Journal of Clinical Oncology, the treatment combination consisting of Erbitux® (cetuximab) plus chemotherapy and radiation therapy provides promising outcomes in the treatment of advanced head and neck cancer.
- Erbitux® plus Induction Chemotherapy Results in 100% Response Rate for Head and Neck Cancer
It is not easy but stay relaxed, stay positive and just do your best. If you feel low, you can talk to us, we are here and will listen. If necessary, i will post you a few jokes
I think jokes will be required soon.
You are one of the few people who seem to appreciate my strange sense of humour, so if you are looking at the website again I shall have to add the odd joke to Vinod's promised contribution.
Thanks John for your thoughts really appreciate you all thinking of me.
That is incredible!
When you say, "they really worked on me and now I am fine..." -- Do you mean there is now no sign of the cancer?
I will specifically ask God to intervene in a unique and powerful way. We need hope. There must ALWAYS be hope! So many people respect and care for you on this website. I hope you deeply sense our collective positive energies and LOVE as your special circle of friends, and receive the BIG virtual HUG I now send across the miles to wrap around you snugly today! KEEP THE FAITH, Sue! Love is powerful!
From my heart,
Still not decided whether to have treatment or not. My oncologist is suggesting a cocktail of 3 drugs: cetuximab, Taxol and Gemcitabine.
I did request a treatment that would allow some quality of life but he obviously does not hail from the same planet as us mere earthlings!!!
He will get a severe talking to next week when I see him!
Any comments on this crazy regime gratefully received.
ALL OF YOU MUST TRY TO HAVE SOME FUN OR LAUGHS EVERY DAY! THIS VERY IMPORTANT
I too feel like a guinea pig at this stage! But provided the side effects are tolerable I don't mind.
I am seeing my Oncolgist next Tues and willask about Taxotere as I have read a lot about it and it looks promising. I hope it has the desired effect on your dad's tumour without too many side effects. Hoping you have good news to report next time,
The U.S. Court of Appeals for the District of Columbia Circuit has ruled 8-2 that terminally ill patients do not have a constitutional
right to access drugs that have passed preliminary safety tests and are now in FDA-approved clinical trials. Rather, the court ruled that safety is still an important issue and that the legislative branch of our government is better suited than the courts to decide the proper balance between the uncertain risks and benefits of medical technology. The ruling by the full court reversed an earlier 2-1
decision in favor of the Washington Legal Foundation (WLF) and its client, the Abigail Alliance for Better Access to Developmental
Drugs, an organization that seeks expanded access to experimental drugs for the terminally ill. WLF plans to appeal to the U.S. Supreme
Court. The case documents are archived at http://www.wlf.org/Litigating/casedetail.asp?detail=266&printIt=1
quote:September 15, 2008 (Stockholm, Sweden) — Treating locally advanced head and neck cancers with an alternating regimen of chemotherapy and radiotherapy, in addition to cetuximab, has demonstrated promising results, researchers reported here at the 33rd European Society for Medical Oncology Congress. All of the evaluable patients in the cohort experienced a response and, aside from a high rate of localized dermatitis, toxicities were in the range of those generally observed with chemotherapy and radiotherapy in this population.
"These results are very promising but they are not controlled," commented Martine Piccart-Gebhart, MD, PhD, professor of oncology at the Université Libre de Bruxelles, in Belgium, and current president of the European Organisation for Research and Treatment of Cancer. "Now we must set up a large trial to prove that these results are valid."
from: 33rd European Society of Medical Oncology (ESMO) Congress: Abstract 694PD. Presented September 14, 2008.
quote:Originally posted by Dr Vinod K Joshi:
I will be starting Erbitux treatments next week. Is there anything I can do this week to prepare for or lessen the side effects, besides taking an antibiotic?
For example, would a facial help or hurt?
Also, is it recommended to get flu, pneumonia, and/or shingles shots before chemo and radiation?
Before beginning rads I was advised that I might require Erbitux but that my doc wouldn't make that determination until rads were completed. Fortunately, I didn't need further treatment.
I got a shingles shot after David Letterman got shingles in his eye, was off his show for over a month and said that it was the most painful, irritating experience of his life (well, other than the scandal with his interns, but that's another story). I'd take any shots that my doc would allow.
The shingles shot is painless, no side effects and one shot provides life-long protection.
I don't think I'd appreciate a facial if my skin was itchy! I also don't think that an aesthetician would work on a face with a rash (that's just a guess).
There's another thread that discusses Erbitux that you might find interesting.
It appears inevitable that you'll get some rashes so be sure you load up on the antibiotic creams, medications - whatever is being prescribed these days. Some of our members have had only mild cases; others a little less fortunate. It goes away though!
Best of luck to you,
I was just considering a cleaning facial before starting the chemo., not during. Vanity is a terrible thing, as a bad case of acne is definitely better than the alternative side effects even 5 or ten years ago. (extreme surgery)
They don't recommend a shingles shot at this time, but do recommend flu and pneumonia shots.
I start on the Erbitux Monday, then the rad. the Monday after that. It's still surreal and scary.
I'm glad this site is available.
Get the best professional advice you can.Once the RT has been done it can't be used on the same area again.