Hi Hellion, is this a phase three trial? They are sure making progress with the immunotherapy trials. Our experience is the side effects only appear after a few infusions, but even then it is mild. Good luck with it.

I have knitted I don`t know how many pairs of socks in waiting rooms since John started his treatments. Does your wife knit�

Best wishes for success on this trial, Hellion.

Hugs and blessings to you.. keep fighting.

OK, another update.

This week we will be getting our first scan since the beginning of the trial. It sounds like there is a 25% growth margin (meaning the tumors they are measuring must have grown less than 25%) in order to continue. It takes some time (apparently) for the body's immune system to start to do its good work on the tumors.

For myself, I am a bit up and down. The nagging cough has persisted which I find discouraging but the medicine is very promising and my overall health seems to be pretty steady which I find encouraging. I have had three infusions of the trial so far and the side effects are quite minimal so that is also promising.

I can't lie -- if this trial doesn't work I will be a bit discouraged so I am trying to stay very hopeful. My doctor continues to love the overall way I look although he is on me about gaining a bit of weight -- I'm having some trouble weaning myself from the all day eating I did after the radiation last year. Fair cop on his part, I need to drop a few pounds now . I just hate when options close out.

My wife (whom some of you know as the most amazing woman in the world) have started a non-profit musicians' haven for cancer patients, survivors and caregivers. The idea is to put together a couple of ensembles of people that understand our issues -- it is difficult to be in a band with people that don't understand chemo-hangovers, doctor's appointments, extended absences, etc. We decided to put together a studio where people could come and play, organize and teach, learn and practice without any pressures. We are hoping it will be like a support group for artists, but without having to talk or think too much about cancer. That has taken over our basement and is keeping us busy. It's a small group so far, but hopefully growing, and I'm excited to have that to look forward to on the weekends.

Hopefully everyone here is doing well -- I am not as active as I was - I continue to try and behave as though I am not a cancer patient. I will update again when I have news!

Cheers,

The Hellion

Dear Hellion,

I'm glad to hear that things are overall going well. I am also very hopeful that your trial will work.

I love the idea for the support group for artists w/ cancer. It must be very therapeutic! Well done!

Keep on chugging,
Kerri

Hi Hellion, the update sounds promising. The thing about immunotherapy is that there are minimal side effects. Brian Hill told me it's because it is the body's own resources that have been brought into play, rather than some substance that is introduced to fight whatever is in the body. John has just had a CT scan and we should find out about the results next Monday. Your wife is amazing -- I wish I were living close to you guys so I could be part of the group, but unfortunately, I am in Canada It is gratifying to hear that you are doing fine. I hope you get good news next week.

Thanks for the update Hellion. This is new and still uncharted territory, but with so much promise. I do feel this is the way of the future and I am so hoping for good results for you.
I wouldn't worry too much about the extra pounds. I am very much of the opinion that weight loss is bad for anyone who has had a cancer diagnosis .
Enjoy your music sessions. Great idea.
Tammy

Enjoy your music and let take you away from cancer for awhile. Keep up the good fight and hope all goes well for you. Semper-Fi Bob

I hope everything is going well for you. I am on the beginning stages of possibly the same journey as you as I have lung mets and am on about my 4th week of Erbitux. I have been and will be 'making sure I learn from you and everyone else to make the right choices as I go along.

Good day all!

I apologize, I know I have been silent for a very long while. To be honest, I have had some bad luck and decided the best way to deal with it was to just armor up. Simply put, my last trial was another bust, which, in and of itself, is not a major problem -- these immunotherapy trials are very hit and miss. We immediately started looking at another, better immunotherapy trial. During that screening, however, they discovered another new problem. The cancer had spread to my brain, or at least to the membrane between the lobes of my brain.

This is not as hopeless as it seems, as the cancer does not appear to have penetrated the brain-blood barrier, but it definitely took a lot out of me. The solution was to administer localized radiation to shrink the tumor such that I can get on the immunotherapy trial we hope to start tomorrow. Meanwhile they also applied radiation to the worst of my lung tumors to reduce some of the cough I have been suffering from since late summer.

The cancer has also spread to my bones, at least my skull and possibly elsewhere, and I pretty badly pulled some back muscles from coughing which has made moving around difficult. All of this really just means I've had a pretty poor couple of months.

Tomorrow we start our new trial and I am, despite everything, still hopeful. My poor, long suffering wife has had to sit through all of this and I have been nothing but a lousy patient through this process -- I'm down, self-pitying and generally lacking in energy. It would appear that this is my right, but I am remembering now that my attitude affects both of us and I don't want her to have to walk such a sad path, so I am recommitting to getting my courage, energy and strength back for another round with this thing.

For what it's worth, never, ever give up. I certainly don't intend to myself although I can say it is difficult sometimes to keep a good attitude in the face of adversity.

I will try and update you guys regarding this trial. Of all the trials, my team are most excited about this one -- it is a dual immunotherapy that has proven to be quite effective in other cancers and is really very exciting stuff. The side effects appear tolerable and I will try to report them accurately.

I hope everyone else is well. We will keep fighting, all of us, because it is what we must do!

Thank you all as always for your kind wishes and thoughts!!

The Hellion