Anyone applied/enrolled in TDM1 EAP?

[jml]

Hi Friends~
Just wondering if anyone has already applied or is enrolled in one of the TDM1 Extended Access programs?
I won't be eligible until August 3rd (60 days after Novalis for brain met) and am hoping the site in Nashville will have a spot open for me at that time.
In the meantime, I have my 1st follow up brain MRI tomorrow and am hoping and praying for some good news there. Then repeating treatment to my liver, probably RFA on 7/20.
I'm also really hoping that now that I'm officially off Ixempra, those nodes in lungs & belly that started showing activity again don't go crazy.
I really need to get on TDM1. I don't know that we have any other options, so I'm trying hard to stay positive but it'll be at least 3 weeks before I could start, if all goes well.

I hope that FDA approval comes through soon for all of us.

[jellybean]

A friend of mine is on the EAP in California. I would suggest contacting the folks in Nashville directly yourself. Perhaps you can get started with the paperwork and everything else so that in 60 days you are ready to roll and don't have a further delay.

[hutchibk]

I am still waiting for a location to open in Texas... hear rumors about Seattle and Chicago, but they haven't officially announced them yet.

Best of luck, JML!

[Lori R]

Dear Jessica,
Best of luck with upcoming scans, I want you to know that I will be thinking of you during this next week.

I agree with JB...there is always so much paper work that if you can start the process, you could be on the plane to Nashville on August 3rd.

Also....doesn't it make you feel better to be actively "doing" rather than waiting.

Are you in Hawaii right now??? Hopefully enjoying friends and family.

Please let us know how things go...we are all pulling for you.

Hugs with an extra dose of energy....Lori

[jml]

I have some GREAT news to share.
I had my follow up brain MRI on Wednesday and saw the Neuro Onc immediately after to discuss the results.
He said the MRI shows the spot has completely resolved, in fact, he wasn't even sure where he was supposed to look to even see the original spot.
He had to refer to the old MRI, then look back at the new one to compare, and said if anything at all, there's a tiny dot, but nothing he would have even noticed.

This is the good news that we have been hoping and praying for, and now we can work on applying for TDM1. My sister and my onc have already gotten the wheels in motion, so hopefully by August 3rd we can get started without any other delays.

In the meantime, I'm feeling stronger everyday since finishing Ixempra, and getting the blood transfusion. I'm scheduled to repeat the chemo embo on Wednesday to knock back the liver lesions and decrease the tumor load.
My mom's gone back to Hawaii :( after 6 weeks of looking after me. I'm so sad and just miss her company and honestly, I'm feeling scared & unsure of if/how to even take care of myself. I've lost a lot of weight and muscle mass and my energy is still not great. I just have to be patient and give my body a chance to recover and heal and get strong again.
We hope that I'll be able to get to Hawaii soon, maybe after my 1st dose of TDM1, to rest and be with my family.
My dad's having heart valve replacement surgery on the 27th, so my mom will have her hands full again taking care of him. I hope I can be there to help too.
Life's road has been quite bumpy for the past few months, so I'm praying that things will mellow out now and give us a well deserved break.
Thanks so much for all your support everyone~

Keep the Faith

Jessica

[chrisy]

Hey Jessica,

What a fabulous report - don't you just love it when they can't even figure out where to look???? That's great news!

Yes, you have been bearing a lot over the past few months - you must be a very strong person to have been "given" all that burden to carry.

I saw a typo in your post of a few minutes ago...

""I'm so sad and just miss her company and honestly, I'm feeling scared & unsure of if/how to even take care of myself""

I know the "if" part was the fatigue talking, and the missing mom...

You know what to do. Try to get some nourishment - even if you have to go slowly, eat clean; maybe some smoothies with a good dose of protein powder. Try to move around a little - just short walks if you can, to start.

You're right, you deserve a break...hang in there my dear!

[vlcarr]

Hi Jessica,
I'm not sure where you live but I live in Nashville and saw that you may be coming here for the TDM1 trial. If you don't have any family/friends here I would be more than happy to do anything for you that I can. Seriously, I mean anything at all. Feel free to message me if I can be of any help. I'm not familiar with the trial or how long you will be here, etc but I just finished my year of treatment and had my port removed last week.

Wishing you the very best of luck.

Vicky

[Pam P]

Jessica -- The good news you've been waiting for & deserve - clean MRI!!! I'm so happy for you. Now to rest, eat well, take good care of yourself, rest more, and prepare for t dm1 when you can get it set up. I'm thinking of you daily. Pam

[Emelie B]

Jessica- What fabulous news! I know how relieved you are. Everyone has given you the best advice. Rest, eat well, and do try to take short walks. My dog and I go for a 30-40 minute walk in the early morning before it gets hot, and it is really my favortite part of the day. I do believe it has helped me to stay positive and strong through this journey.
Take care of yourself and CONGRATULATIONS,
Emelie

[schoolteacher]

Jessica,

Glad to hear your good news. Lets us know what happens about the trial.

Amelia

[Patb]

Jessica Great news and you have a plan which makes
us feel better. Best of luck and keep us posted.
I am from Nashville and its a nice city to be in.
patb

[Lori R]

Jessica,
How did I miss your post?? That is GREAT news!!! Whew!!! Counting down the days to August 3rd.

Taking care of your body and spirit is exactly the ticket.

How generous of Vicky to offer to help out...take her up on the offer!!! Sounds like a new friendship. Isn't it wonderful how god places what we need in our path, when we need it???

Jessica...you are such an inspiration, please keep us posted.

Thinking of you....Lori

[CourtneyL]

Hi Jessica - Just wanted to add my voice to your cheering section. Fabulous news about your scans and getting access to T-DM1. Keep us posted on your status. We are all pulling for you and praying that this drug will be the miracle we all hope and need it to be.

[jml]

Thank you everyone for your cheers & encouragement.
After the disappointment of not qualifying for the last TDM1 trial in Indianna, I've been holding my breath as I've waited to hear back from the folks in Nashville.
The good news is I just spoke w/the research nurse and she's reviewed my records and based on that information, I should qualify for the study.
I have an appoinment to consult with the research doc & screen for the study on August 3rd. Once I've signed the consent form, they'll order another echo and a CT to get accurate measurements of the mets. God-willing, I will be able to start drug on August 10th.
I'm still feeling cautious however. Hoping an praying that the results of the echo and CT don't hold any surprises that would prevent me from getting into the study.
We'll also be watching my cbc's closely in the next two weeks, to make sure my counts don't drop so low that I would need another transfusion, because that could cause a problem too.
So, everyday I'm feeling better and stronger now that I've been off Ixempra for over 2 weeks and that's encouraging. The challenge is trying to stay relaxed and positive for another 2 weeks as I wait to screen for the study.
Vicky-thank you for your sweet and generous offer. Hopefully we'll have a chance to meet, as I hope to be coming to Nashville every 3 weeks for the TDM1. It sounds like you're doing well, and I'm so happy for you!
Thanks everyone again for the support. You have all made this journey a little less bumpy with your kindness~

Keep the Faith~

Jessica

[Pam P]

Glad to hear things are coming together for the t-dm1 and am holding good thoughts that it will all be a GO! Waiting is hell and 2 weeks seems like forever I'm sure so I hope you can plan some nice 'distractions' for yourself during this time doing exactly what you like to do. So glad you hear you are feeling a little better too. Amazing how the body can bounce back so nicely with a chemo break.