Interviewer: 60 Minutes presents a live interview with Charles and Debbie Griffin.
Interviewer: Charles and Debbie thank you for talking to us tonight, in our live online chat room.
Thank you for the opportunity of sharing our story.
Zel35 asks: Hi Charles ...... when were you first diagnosed?
Charles: I was diagnosed around May 2008.
BevS asks: How do you find out if you are eligible for a trial of the new drug?
Charles: It’s something that you would need to approach the Peter MacCallum hospital, and the best way to do that is to register your interest. By visiting the www.petermac.org website or calling 03 96563692.
damecello asks: Do you think you were genetically predisposed to melanoma?
Charles: Some people would say yes, as I was fair skinned, fair headed and blue eyed as a teenager. But there is no absolute proof of that, but there is a general feeling that people who fit that criteria are more prone.
shelley asks: What specific treatment had Charles had before going on the clinical trial?
Charles: A central node biopsy on the head including a skin graft, and then two neck dissections, and then some chemo and lastly the trial drug.
Zel35 asks: Also wondering if you knew you were getting the trial drug from the beginning, rather than the control?
Charles: I started the treatment on the 9th December 2008, there was no placebo with this trial and only found out about this trial a few weeks before beginning it.
shelley asks: Are there any side effects from the trial medication?
Charles: Initially my dosage was much higher and there was significant side effects, but then they adjusted my dosage and now the side effects are relatively minimal. In my case there were some rashes and some joint aches & pains, and the skin was showing signs of little lumps which were not malignant. And some loss of body hair.
Sally asks: Where had your melanoma spread to?
Charles: My melanoma had spread to the liver and the lungs.
shelley asks: Have you had any other relatives diagnosed with melanoma
Charles: Not to my knowledge, there had been skin cancers, but not Melanoma.
gladwrap asks: How do you think this whole process has been for you emotionally?
Charles: Good days and bad days, which is normal with cancer, but generally now life is pretty good.
shelley asks: Do you know how large the trial groups been?
Charles: I was part of the first trial group that set the dosage. And my understanding is that there were 30 people, most of whom were in America.
Debbie: Charles was the first person on the trial in Australia, it’s only been in the recent weeks that others have gone on the trial.
mikem asks: Did you worry about joining a trial? What were the risks that were described (I assume there were some)
Charles: I guess we took the discussion about going on the trial seriously. I didn’t overly worry about it because it was a much better alternative than doing nothing as there appeared to be no other option. And the reality was they weren’t sure of what the risks were, but as I was in the group that was setting the upper limit of the dosage, some of the side effects in the initial period were very significant. But I have recovered from those.
kaka asks: Is it expensive, these pills? And do you need to take them for the rest of your life?
Charles: As it was a trial drug, and being part of that trial, there is no expense directly associated with the pills from our point of view. And at this point the understanding is that I will take it for the rest of my life. But you never know what other alternatives may come up in the future.
tannic asks: What symptoms did you have?
Charles: The initially symptoms were swelling of the face, severe rashes and some deterioration of the skin. Others were loss of body hair and impact on the functions of the liver and kidneys. All of which of a large degree I have recovered from, and now the dosage is significantly less.
jessie asks: Good evening Charles & Debbie, after watching 60 Minutes tonight, wanted to ask where you went to have you moles screened? Was it a skin specialist or just your local GP?
Charles: The initial consultation was with a GP, then with a plastic surgeon to do the biopsy and then I went to Peter Mac which I already had an association with because of previous cancer issues, which are separate to the melanoma.
Alana asks: Are you in remission now?
Charles: With Melanoma, it appears one doesn’t go into remission, rather I’m in a managed situation where I’ve since been on the trial, not developed anymore tumours and those that I have, have reduced significantly in size.
jfrohnert asks: Do you believe that your drug has the potential to be a vaccine?
Charles: I’m not in a position to answer that, it is taken orally and if they wish to know more, then they should register their interest at www.petermac.org . At the end of the day, we’re not doctors.
damecello asks: What are the major changes of lifestyle since diagnosis?
Charles: Because of a previous experience with cancer, I was already very conscious about diet, and largely I eat organic food and very little red meat. And because of a previous cancer of the stomach, I was largely vegetarian for about four years. In terms of general lifestyle, I live pretty much a normal life except I am highly sensitive to sun burn.
shelley asks: Debbie - Is the medical system providing you with the support that you need as a carer?
Debbie: Yes the hospital does provide support for carers who need some help, there are psychologist who are available to talk to you at anytime, providing you make an appointment. The coordinating nurses who also manage patience together with the Doctors are also excellent and they are there at anytime if you have a question or if you are worried about your patient and you can ring them at anytime to get some help. So yes, I’ve found the hospital and staff quite wonderful!
lewis asks: Have you seen any of your melanoma lesions reduce or resolve on the trial?
Charles: Yes, all of them have reduced to some degree and I have a CT scan every eight weeks which monitors the state of the lesions.
rodh asks: Hi, I missed the story on TV tonight, so sorry, do you know if there are limitations as to the type of melanoma cancer that can participate in any future trials?
Charles: The key to this treatment is having the BRAF gene and I believe over 50% of people do, so this is a primarily requirement. For further details on the trail, register your interest at www.petermac.org
Debbie: In the case you do not have the BRAF gene, there may be other clinic trials available to you.
Renaydee asks: Was there any family support contributing to the strength your wife shows to support you through this? Was your family all in support of your 'guinea pigging'?
Charles: I was very fortunate to have a very organised and caring wife, our three children certainly have shared in and been a support during this journey. And I’m very fortunate to have that level of support.
mihalo asks: At which hospital was this trial conducted?
Charles: The trial is being conducted at the Peter MacCallum hospital in Melbourne, Victoria. For more information visit www.petermac.org
Renaydee asks: Other than CT Scans, do your blood counts of cancer counters change?
Charles: The blood counts of cancer isn’t something that directly measured, but there are counts in terms of the performance of my kidneys and liver and the normality of my blood that are monitored on a 4 weekly basis.
Alana asks: Are you starting to feel better after taking this medication?
Charles: The reality is the actual cancer didn’t really affect my quality of life as there were no symptoms affecting my quality of life. But certainly the treatment, particularly in the initial period severely affected my quality of life in a number of ways, including rashes, loss of body hair, swelling, skin deterioration, loss of weight and sensitivity to sun. And as a result of that I did work only minimally, but am now working full time again and am feeling best I’ve felt since I started this journey.
Alan asks: I have just been diagnosed with melanoma this week. I have to make an appointment at the Peter MacCallum Institute, which i intend to do tomorrow. I missed tonight's story. How can I get information about this new drug?
Charles: Two things, one is the website www.petermac.org and the phone number is 03 9656 3692 and if it’s possible, the senior oncologist is called associate Grant MacArthur, if you can get to see him, that would be good.
Debbie: If you go in tomorrow, you should certainly mention the program and this trial drug to the doctor you will see. But of course it may been before you get all the answer, you will most likely have to undergo some tests. We wish you the very best.
Interviewer: I am sorry we are out of time, do you have anything else you would like to share before we finish tonight?
Charles: Should people want to find out anymore details about the trial, they should register their interest with www.petermac.org or ring 03 9656 3692, and we wish you ever success.
Interviewer: Once again thank you and goodnight.
Interviewer: This concludes our chat with Charles and Debbie Griffin, Sunday November 8, 2009.
