The Abigail Alliance is dedicated to helping create wider access to developmental cancer drugs and other drugs for life threatening illnesses.

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.

This message has been edited. Last edited by: Dr Vinod K Joshi,

My Dad is currently on this treatment

Hello Eyecandy,
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

This message has been edited. Last edited by: Tony K,

Good to see you posting again, EC. I have thought of you (and Dad) often. How is he doing?

Like Tony, I would be very interested to know more about Erbitux. If you could keep us updated as to how your Dad is responding, that would be wonderful. My Dan continues to show no cancer recurrence, but with the long-term survival statistics as they are, it is not likely he will remain cancer-free... Therefore, I want to learn all I can beforehand about treatment options for the second time around.

I also wonder if Erbitux can be taken as a preventative measure (to perhaps ward off a recurrence)??? (Dr. Joshi... if you are reading this, do you know?)

Thanks in advance, EC, for anything you can share with us about Erbitux. Tell you Dad we are thinking of him and wishing you both well.

FMH,

Melanie

Hello Melanie

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.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Side effects! - stuff the side effects (if you'll pardon the expression!). We want life!

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

HEY EVERYONE.. Thanks for thinking of me and my dad Melanie... Well he did have one side effect and he had a breakout on his face but this means its working. The chemo and the Eributex are given at the same time .. The first does is a big one and depending on how your body reacts to it the doctor will judge on how much to give you..He has had the normal side effects that chemo has which basically sucks.. Eating isnt all that great since he chokes on stuff still so he is ltd to what he can eat.. The doctor was pleased with the blood results but we are going to have another MRI done to see how the tumor looks on his liver.. The doctor said it was small but hopefully this stuff will kill the cancer cells.. We just need some good news these days its been a long long long road..

Hi eyecandy, please can you tell me which chemo your dad is having with erbitux and more details of side effects and regime. I am about to start erbitux with taxol as my throat cancer has now spread to my lungs. Have had 6months of cisplatin but the tumours have grown 100% in the last 3months!! This treatment seems to be a last resort. My onco says it will only give me an extra 2 months and I am wondering if the side effects are worth putting up with or whether to just let the disease take its course and have palliative r/t when the pain becomes severe. Any advise from anyone would be appreciated, feeling a bit low at this stage!!!

Hello Sue

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

This later clinical trial evaluated the effectiveness of Erbitux in combination with chemotherapy including Taxol® (paclitaxel) and Paraplatin as initial therapy in patients with head and neck cancers. Erbitux did not increase notable side effects; however, approximately half of patients treated with Erbitux experienced severe skin rash. The rash appears to relate to the efficacy of the drug!Let's us pray that you get the benefits without becoming a pimply teenager!

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

Take care.

Best wishes
Vinod

Thanks for the reply Vinod. I am preparing myself for the elephant woman look with no hair and acne!! But hopefully all in a good cause!!

I think jokes will be required soon.

Take care

Good Evening Sue, It is really good to hear from you again.I started to put a message together more than once but could not seem to find the right sort of words, In fact I have not made any postings for a while, I have had a few minor aches and pains and found it easy to blame them for not doing what I should have been doing.
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.
Keep Smiling
John

Hello John

Good to see you back. Hope all is well.
Here's a joke to make you keep smiling!

Best wishes
Vinod

Vinod I am shocked!!! But laughing
Thanks John for your thoughts really appreciate you all thinking of me.

Take care

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