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.
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
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 Coffee
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!!! Frowner
Hello Sue

These two studies show a benefit: 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!Yikes

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 Smiler

Take care.

Best wishes
Vinod Coffee
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 Razzer
John
I was happy enjoying with my family and was working as an umpire at West Indies. But a distress was waiting for me and my family that is I was diagnosed with kidney cancer. This made me to suffer a lot. I was very very depressed when I heard that I was attacked with this deadly disease kidney cancer that was at fourth stage. The doctors also said that I was about to die in 70 or 90 days. I went to hospitals in search of cure for it. As my condition was worse my kidney was removed by doing a surgery at the hospital. But I could not find any remedy from it. As the doctor said that it was my final stage all my relatives from London came to see me for the last time. Later on, after the surgery I was unable to move even my hands. I lost about fifty pounds of weight. The doctors of the most recognized hospitals said that it was incurable. Then I got the lost hope that is Dr.K.Rao the specialist who cures the suffer with the natural and herbal dietary supplements. I did not have a belief at first. But they really worked on me and now I am fine and willing to continue my work as an umpire. I also went for a foreign trip recently to London my relatives were really surprised to see me there. I am really thankful to Dr.K.Rao and his organization for making me a normal person. For more details visit doctor.
Dear Sue, I've been wondering how you were keeping, so I was pleased to see you back on the board, but sad to hear your news. Deciding what treatment to have is difficult, but whatever you decide will be the right one for you.All the very best in whatever you decide.My thoughts are with you.
Rash...

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?

Sue...

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! Smiler KEEP THE FAITH, Sue! Love is powerful!

From my heart,

Melanie
Fran and Melanie, your thoughts mean a great deal to me, brought a tear to my eye - not often seen unless I'm laughing too much!!

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
We got the results from the MRI and the Erbitux didnt work on my dad Frowner . The doctor is now givinghim Taxotere.. same side effects but i guess it depends on the person.. at this point I just feel my dad is a guinuea pig. We have had nothing but bad news I pray and pray and we just want something anything saying the tumor has shrunk things look good.. Im sorrry to be such a downer but I really dont knwo what to say. I think they are doing this just to keep him alive.. The side effects with Eributex were diarehaa but that could of been from the chemo.. loss of appetite energy etc..the rash wasnt that bad they say if you break out it means its working find that to be a crock of s*&*(^ since nothing helped my Dad
Hi eyecansdy,so sorry the Erbitux (Cetuximab) didn't work for your dad. What chemo did he have with it?
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,
kindest regards
SUe
I dont know the type of chemo he was taking.. Yeah I heard it was promising but so was the other stuff and it did nothing but cause a rash on his face..My dad puts on a front.. he finally asked for sleeping pills so he can relax a bit. This treatment is one for 3 weeks then off for a week and I think a MRI in there some where not sure my Mom told me but I cant recall what she said I was so mad more sad then anything about the news
I'm currently getting radiation and chemotherapy for treatment of a mouth tumor. One of the chemo drugs is Erbitux. I was started on that about 6 weeks before the radiation. The Erbitux is suppose to shrink the tumor and also makes it more sensitive to the radiation when that treatment starts. It seemed to both in my case, as the tumor is much smaller now then at the start of the treatment. I don't think Erbitux will get rid of cancer on it's own, but certainly enhances the radiation. And yes, I got a bad rash, like most people do.
Appeals court upholds stringent FDA regulation of experimental drugs.

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
Alternating Treatment Regimen Shows Promise in Head and Neck Cancer
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?

thank you.

Hi Berry,

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.

https://chat.mouthcancerfounda...with-cisplatin-chemo

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,

Mimi

Mimi,



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.

Thank you,
Berry
My father was diagnosed with throat cancer recently (2 cm tumor on a larynx, difficult to reach, so non-operable). Myself I am based in London, but my father is getting treated in Latvia. His doctors prescribed him a combination of Erbitux/Cetuximab and a radio. We asked for a second opinion in Israel, just to make sure we are on the right way, and the doctors there also said for a combination of radio and chemo, but advised to use Cisplatin instead, as they are using Erbitux/Cetuximab only as a last resort , when there are no other possibilities. Honestly, I feel as to go with Latvian doctors, because from what I have read Erbitux/Cetuximab is more effective and has less side effects. I would be very grateful if anybody could comment on that…

Add Reply

Likes (0)
Post
×
×
×
×