UK Skin Cancer and Melanoma Patients

[baycabbie]

Hi Everyone, I have just returned from 8 hours in the Moffitt Cancer Center. It is also a 3 hour drive one way to get there. It was worth every minute. All of my tumors are either gone or so tiny now that they can't tell if there is any melanoma left in them. They told me what was left could be inactive for melanoma. I broke down in the room for a few seconds from the news. I was not given long to live back in April of 2009. The scientists, doctors, nurses were all celebrating the results. Everyone was smiling. I have no melanoma in any vital organ. I was stunned. I wanted to ask Dr. Weber many questions, but all I said to him was hello. I just could not think straight after the good news. Again, I had to have a blood test when I arrived, then an EKG. Then I was allowed to take a dose of the pills. 4 hours later another EKG and another blood test. This is the rules of the trial. That is the way it will be every three weeks until they do a CAT Scan and MRI Brain Scan again in 6 weeks. So I do not have to go back for 3 weeks. They give you enough pills to last the 3 weeks. The R05185426 pills work very fast, as I said in my previous post, within 2 days, tumors were gone. Again, they told me the other 8 people in the trial had the same results. One person from our trial was in the Clinical Trial Unit today, but they would not tell me who the person was, or let me talk to the person. So I began what they call Cycle 3 today. This will be my 3rd cycle of three weeks on the pills. So what does this mean for the long haul? I don't know and either do they because this trial is a first. So I am a Lab Rat, and so are the other 8 people in this trial. So know idea what the future will bring. Just have to keep with it and see what happens. I think the way these pills work is they cut off the food supply that the melanoma feeds on from your body. So the pills make the tumors starve and die. So with the future unknown, the present is positive. Other Cancer Clinics in the United States are starting to recruit melanoma patients to start their own trials. They told me one lady in the trial had so many tumors in her lungs, she had to have assistance to breath. Well those day are over for here as her tumors are gone and she can breath as a normal person. She is having a normal life now after 6 weeks in the trial. Again, I am just a lay person and am reporting my story. If anyone has any question they can still email me at baycabbie@aol.com.

Good Luck to everyone,

Roy

[baycabbie]

Dear Rainman, I am hoping the posts I am leaving you can be useful for you and your partner. Find out if this trial will be starting soon in your area. Find out if your partner will qualify. Even if it's not in your area, find out where, and go there. Your doctor will have to refer you to the person in charge of the trial.

Wishing you and your partner happy holidays, and the best of luck for you and your partner.

Roy

[Lucy]

Rainman, sorry for hijack of your thread - I just want to thank Roy very much for his posts on this topic, as they have been useful to me and perhaps others reading.
I also want to thank you, Rainman, for directing me toward Dr. Corrie who was lovely when we spoke earlier.

I hope your partner is doing Okay and you are not struggling too much at the moment with this situation...I am not sure if Christmas makes things harder in a way.

Thoughts are with you.

Lucy

[baycabbie]

Dear Rainman and everyone else,

I just returned from my 3 week check up at Moffitt Cancer Center in Tampa Florida and learned some new information about the stufy for the Roche R05185426, for the NP22657 Study. Roche dictates to the Cancer Centers how many people can be enrolled in the study. For Moffitt it was 6 patients. And I was one of the 6. Roche was so pleased with Moffitt and the results of the trial, that they authorized 5 more patients to enroll in the trial. One lady got here first dose yesterday, I am positive in 3 days, she will not beleive the results she will see. The other 4 have just started the qualification process. However I was told that all 5 of these patients got there own test to see if they had the mutated graf gene prior to going to Moffitt. Moffitt has their test results, but it will have to be confirmed at the lab dictated by Roche and the FDA. I was also told that people from all over the country are calling Moffitt to get enrolled, but Moffitt has to turn them down as the trial is full. It is going to begin in other locations around the United States with qualifying starting in January of 2010. I also walked around the Research Unit today and found one of the 6 people enrolled in our trial. He is a male in his 50's and live's in Florida. His melanoma started in the heel of his foot from a serious injury to that foot from an accident 18 years ago. That's right, they told him melanoma can be triggered from trauma. Never knew that was possible. After 18 years of no problems, his leg starting growning many tumors. His leg swelled to twice it's normal size. He had so many tumors in the knee area, he could not bend his knee. His CAT Scan and Brain MRI showed melanoma at the top of his brains stem and also on his liver. He any so many tumors on his leg, he never counted them all. After 3 days on the drug, his tumors were gone and some shrunk by 70 percent. When I looked at his leg today he had a couple of tumors the size of a bug bite and his leg looked normal. He is back running, playing golf, and leading a normal life after 4 weeks on the drug. He had his new Cat Scan and MRI 3 weeks ago, and the melanoma on his liver and brain stem is gone. Same goes for his leg, either the tumors are gone or very tiny for the ones that are left. So this drug works fast, within 3 days you see improvement that is a major miracle. Again, since we are the first lab rats in the country, we don't know if it lasts or not, and either to the experts. But, so far so good.

I hope if Rainman and his partner can find this trial in their area of the world that the partner can get qualified.

Good Luck to everyone,

Roy email baycabbie@aol.com if you have questions.

[baycabbie]

I just saw on the net that the trials coming up will be in several cities in the United States and Australia. None in Europe. That just not make sense. Roche is located in Europe, Switzerland is their main headquarters. If anyone knows of trials starting in Europe, please let us know.

Roy

[Debi_D76]

Dear Rainman,

Was just going over your posts as i hadn't looked for a while, i am so sorry to hear about Pauline. I hope she is responding well to treatment and my thoughts are with you both.

Debi xx

[rainman]

Pauline passed away peacefully as I held her hand on Friday 26/02/2010. She was in no great pain.I do hope for her sake that this terrible desease is brought under control at some point.Thanks to everyone who read the posts and good luck to those unfortunate to suffer from this.

[ally]

Rainman,
Words cannot express my sorrow for you and your family.
As you say - the faster we can find a cure for this dispicable disease the better.
I know now is not the time but maybe in the future you could help us warn others of how melanoma spreads by writing down what happened to Pauline and letting Seanty place it here so others may read it and be more aware :http://www.mymalignantmelanoma.com/index.html
Your experience was so terribly aggressive and fast, its hard to believe it's not yet a year since Pauline was diagnosed.
My very deepest sympathy to you and your family;
Alison. xxx

[DanCon]

So very sorry to hear your sad news. One of my melanoma friends passed away on 19th February and yet we were chatting happily before Christmas with her hoping to go on a trial as her melanoma had just re-surfaced. It is truly scary how fast this thing can travel.

Take care and deepest condolences.
Lesley

[ruth]

I'm so sorry to hear this sad news. My condolences to you and your family.

[LynnPJ]

Dear Rainman
So very sorry to hear the sad news about Pauline, - you must be devastated, - I just wanted to add my condolences to those already expressed and say how very brave you have both been throughout the whole of this dreadful ordeal.
We all pray for better treatment for this dreadful disease.
With love and kindest thoughts
Lynn

[Autumn]

Dear Rainman, I am so sorry to read the very sad news about your wife Pauline, thinking of you carole x

[kath1974]

So sorry to hear your news. Thinking of you and your family at this time.

[Marsha]

Dear Rainman, I'm so sorry to hear the news of Pauline. My thoughts are with you at this dreadful time.

Marsha x

[Janet2]

Hi Rainman,

I'm so sorry to hear the sad news about Pauline and can only imagine what you are going through. I would like to send my condolences to you and your family. Thinking of you all.
Best wishes, Janet

[Debi_D76]

Hi Rainman,

I am so sorry and my thoughts are with you!! Both you and Pauline showed a tremendous amount of courage! There's not much anyone can say to ease your pain at the moment, you will be in my thoughts in the coming weeks and you may still benefit from using the forum - i know it's still helping me.

Sending all of my love to you, take care x

Debi

[Shaz41]

So sorry to hear your news Rainman.
My thoughts are with you and your family at this sad time. You have both been through a great deal. I hope you can take a little comfort knowing that Pauline is no longer in pain and at peace.
With love
Sharonx

[elliott868]

Dear Rainman
So very, very sorry to read of Pauline's passing. You sounded a tremendous support to her in her battle against melanoma and I'm sure that it gave both of you immense comfort to be with each other at the end. Thinking of you both, and wishing you much support & comfort in the times ahead, Sharon E x

[Pip]

Dear Rainman.
How sad I am today to read your post.
Please accept my condolences.
What a terrible;e time for you,thinking of you,
Love Pip xx

[gilly]

So very sorry rainman.....

[jen]

Hi rainman, so brave of you to find the time to tell us your terribly sad news about Pauline.
Just wanted to say how sorry I am.
jen

[Annie]

So sorry to read your news Rainman, God bless.
love,
Annie

[seanty]

sorry for your loss rainman...

[jaqlyn]

Dear rainman,

So sorry to hear of your loss, my thoughts are with you and your family

Love Jacqui

[tracyb]

So sorry to hear of your loss Rainman, love to you and your family x