TDM1 Trial Participants: I Need Advise

[Carolyns]

Hi All,

As some of you may know I have flown to Detroit to try to qualify for the trial there. I may be getting in and start treatment next week (fingers still crossed to be verified on Monday). I will be flying back and forth to get treatment and screening every week if I get in.

Anyway, my questions are:

1). If I get treated on Friday will I be okay to fly home that night Detroit to FLL (3 hour flight)? Typically when I have done chemo of any kind I am okay for at least the first 12 hours. I prefer to get home for the support of my friends and family... to be in my own bed and near my cancer center where they always are just a quick phone call and drive away (they also have a TDM1 trial and know much about it... the trial they have is not open to me). So if you were me would you come home that night?

2). Pre-meds - do you get any?

3). Any words of wisdom on this trial? I am going to take a look back at Chrisy's liver diet and drink extra water.

Thanks in advance for your advice.

Love, Hope, Peace, Carolyn

[norwegian]

Hi Carolyn!
Unfortunately I cannot help you with any of your questions.
But,- I want to wish you luck on monday!!!!
I'll cross both fingers and toes for you.
Love and a big hug!
N

[Sandra in GA]

No answers, but lots of prayers going your way. So happy for you spirit and spunk to get into this trial. Lots of hugs!

[Barbara H.]

Hi Carolyn,
I felt a little chilled after my first infusion as if I were coming down with the flu. However, I came home, ate dinner and went to Curriculum Night at my school. (6-9p.m.) I did an hour presentation for the parents of my class and returned home at 9:00. You might not feel great, but I would advise you to fly home. The next day I felt fine and worked a full day at school. There are no pre-meds with this trial. This drug is very tolerable. Starting next month I will have been on the trial for two years.
Best wishes,
Barbara H.

[IRENE FROM TAMPA]

Hi Carolyn

I found this trial to be a very easy one. The only thing I experienced a few day's later were chills and fever, but I think I am the only one to have that side effect. As far as nausea or feeling bad - none.

I see that you live in Florida, so do I. Could you not find a center closer to you. My onc office, which is now called Florida Cancer Specialists, has the trial going. I will be there tomorrow and can check. Florida Cancer also has offices thoughtout Florida.

Good luck it is a wonderful study. Keep me posted.

[Lori R]

Carolyn,
I am so excited for you and wish both you and Barbara all the best.

Thank you for posting these questions as there are more "lurking" than you may realize.

I am headed in for my post cryosurgery / Abraxane Pet/CT. I have been feeling a burning sensation in my stomach and am 95% certain that the treatment isn't working.

So....I am very interested in this trial and would also have to travel. (I live in a suburb of Denver, CO)

Carolyn, you mentioned that you would only need to travel for the first 9 infusions. Is that recollection true? Can you receive your other treatments locally because there are TDM-1 trials in your area?

I am just trying to data gather to determine if a non-local trial would even be remotely possible. (I too factor in the impact to my highschool daughter when making treatment decisions)

Any insights would be appreciated....Lori

[Carolyns]

Hi All -

Irene, My trial is TDM4688G. I have been told over and over that this trial is not yet open anywhere in Florida. If you find out otherwise please do tell! I have heard that other places are close but close doesn't cut it for me anymore as I have been off treatment for almost a month and have things growing on me. Thank you for your well wishes.... I follow your story and wish you all of the best too!!!

Norwegian, Thank you for your well wishes and please keep those fingers and toes crossed!

Sandra, Thank you. I feel blessed to have some spunk left in me. It is required to push the system and advocate for yourself.

Barbara, Wow, if you could do what you did then I think I will be just fine. I am so excited to learn that you have been on this combo for almost 2 years. Thank you for sharing and adding your support. I wish you the very best going forward!

Hi Lori, I sorry that you are not feeling well. I can tell that you know just how difficult these decisions to travel can be and the many ways it impacts us to have the need to do so. We have so many others involved in fighting this disease including our dear children. There are financial decisions and on and on. Ideally, the trial would be open somewhere in Florida or in a near-by state. I have been told for a few months that it should be open in Florida... The video I did on trying to get into this trial was shot in early July and (to my knowledge) there still aren't any sites open in Florida. With regard to the transfer back home, as I understand it so far, I must go to Detroit about 9 times. Please keep in mind that almost everything I have been told to date has turned out different than what I was originally told. So, I have to wait and see. I am going to Detroit and then... First and foremost I have to get confirmation that I am in the study. I hope that your current treatment is working and that if you find an opportunity to go into this trial that there is a way for you to do so. You have my hopes and prayers.

Thanks to everyone for the support!

Love, Hope, Peace, Carolyn

[suzan w]

Good luck Carolyn...and thank you for being one of the brave ones involved in trials~~!! XO Suzan

[Faith in Him]

Praying that you get into the trial today. We're pulling for you.

[Carolyns]

Update,

I got a call today. There are many scans that must be completed and run prior to being accepted. The guess is (as of today) best chance to start the trial is by next week not this week... if the scans come back okay.

Thanks for your continued support, hope, and prayers!

Carolyn

[chrisy]

Hi Carolyn,

My first infusion was an all day affair (the study required a long period of "monitoring") and by the time I was headed home I did have fever/chills. When I called the doctor she said to take an ibuprofen which worked great. I was back at work the next day. I also had an episode on I think day 3 of acute pain in my liver (which was the site of the tumor) which lasted a few hours then was fine. But I haven't heard of anyone else having THAT happen.

For the first treatment, you could certainly make it home but might consider staying overnight in town if possible, just because it's a long day. On the other hand, there's nothing like sleeping in your own bed!

With subsequent treatments I feel tired but not unwell on infusion day (it may have something to do with having to get up and leave the house 3hrs earlier than usual). A few days later I get a lowgrade fever and headache which I either tough out or kill with an ibuprofen.

Ongoing, you should be able to go home without problems after infusion - I drive 2 hours home afterward and have also traveled by plane afterwards on numerous occasions.

There are no premeds, and overall I have to agree with Barbara H and Irene, this is a very tolerable drug.

As to the locations, keep asking about other locations; the trial I was in at UCSF was never included in the official list of locations. But I agree, if you're close to getting in one, grab it. Once you're in, especially if you are doing well you may be able to make changes.

Also, remember the scans are not to DQ you (although you will have to pass the ECHO/MUGA!), they are to get baselines for evaluating the effectiveness of the treatment. They have to be done within 2wk prior to starting the trial.

Hang in there, sounds like you're getting close!
Chris

[chrisy]

Carolyn,

OK, your reference to "The video I did on trying to get into this trial was shot in early July..." caught my attention!

Can you tell me more about this?

For some reason I am picturing Elle Woods' video application to Harvard Law in "Legally Blonde"...which of course worked!

Anything to make people see us as, well, people with lives we want to fight for.

[Carolyns]

Hi Chrisy and all,

Thank you for all of the support you give me on an ongoing basis. You give me strength and keep my spirits high.



Attached is a news story that aired on July 31st about my efforts to get into the TDM1 trial for Chrisy and anyone else who didn’t see it already. It says in the story that I am in the trial but that is not true yet. When you click on the link below you will see the picture icons on the right hand side of the screen. Go to the bottom of the icons to the image labeled, “July 31st titled – Local doctors work on drug to stop breast cancer.” That is the story about TDM1.


http://cbs4.com/video/?cid=145

Please keep your fingers crossed for me that I can get into the trial and that it works.

Love, Hope, Peace, Carolyn

[Sandra in GA]

Your "video" is amasing. National coverage! Way to go! I just know that you will get into that study and that the TDM1 will take care of those mets you have. Nothing can beat someone with your attitude and knowledge!

[schoolteacher]

Carolyn,

Praying that you will get into the trial.

Amelia

[Mgarr]

Carolyn,

Saw the thread after my message (oops) anyway, my offer stands PM or call if needed.



Mary