Now Novalis for brain met too:(

jml · 05-20-2010, 02:33 PM

I just met with the neuro-radiologist this morning to discuss the results of my Brain MRI.
So the 4mm spot is definitely something.
When we first discussed the results, I was amidst being dropped from the TDM1 study in Indiana, trying to shift gears to a new plan for the liver lesions AND finding out about the spot on my brain.
It was too much for me to handle, so my onc even suggested we just re-scan in 4-6 weeks.
Lo-and-behold, in order to qualify for the TDM1 Compassionate use program, you can't have any brain mets or at least 60 days since last treatment.
So, I had to face the fire.
One 4mm spot, L frontal lobe.
I've never been one to keep up with annual brain scans throughout the 8 years of fighting this disease - just too scary for me. If not for screening for the clinical trial, I may have never had the scan, so I guess it's good that I was forced to have one done, even if I didn't get into the study.And we caught it early and small.
I'm just so scared right now.
Everything seems so daunting and I'm not sure how I'm going to manage it all.
Even though I've seen so many of you handle this situation with so much grace and ease, and by your example I've come to feel less nervous, I'm still feeling overwhelmed.
The next couple of weeks are going to be pretty intense.
Continuing on Ixempra/Herceptin, then Novalis for the brain met on June 3rd, and chemo-embo for the liver mets on June 8th. I don't know if/how many times we'll repeat the chemo-embo, I'm sure they'll tell me.
I'm trying to keep my eye on the prize - TDM1...
and after all these procedures, I should be able to qualify for the Compassionate Use program.

Thanks for sharing your stories and offering inspiration & hope~

Jessica

Darlene Denise · 05-20-2010, 07:28 PM

Jessica: I am so very sorry that you are in this dark and scary place right now. Sadly, I have been there many times. It sounds like you have a great plan in place to manage this new setback. I hope you will regain your sense of empowerment once your Novalis and liver treatment take place. I have had several brain lesions treated by Cyberknife and so far so good. I am working on my liver at the moment with Navelbine/Herceptin and would like to pursue TACE if this does not take care of things. I have not been a candidate for RFA etc, so, I am hopeful we can re-gain control with the chemo.

If I can give you any info or help, I'm here. I send hugs and best wishes as you move forward with this.

Stay strong...Darlene

ElaineM · 05-20-2010, 08:46 PM

I am sorry you are going through this. However, please remember to keep putting one foot in front of the other and keep going no matter what happens. Keep your eyes on your goal. (T DM1)

Monica · 05-21-2010, 07:19 PM

Jessica,
Setbacks can be so scary and daunting, but somehow we pick ourselves up and move ahead. Like you said, you did get lucky getting the brain scan and catching the tumor early – and only one of them. I wish you the best in your treatments.
Monica

'lizbeth · 05-21-2010, 08:34 PM

Jessica,

I'm so bummed that you have a met that kept you from the trial you wanted.

I hope that things go smoothly for you and the upcoming treatment sends those little cancer cell packing!

Lots of love and good wishes coming your way,

'lizbeth

Lori R · 05-22-2010, 05:25 AM

Dear Jessica,
What an inspiration!!! You are doing an amazing job of waging war. I am impressed that you were able to fight the battle on a couple of fronts and have plans in place.

Many have said the researching / decision making is the toughest part. I am sure you will feel much more optimistic when you are actually completing the treatments. Darlene's post was an extremely encouraging update on brain mets and the chemo-embo sounds like a very powerful weapon.

I just know that you are going to beat this back. THEN...you'll also have TDM-1 in your hip pocket.

Wishing you strength and peacefulness...Lori

Joan M · 05-22-2010, 05:44 PM

Jessica,

I'm very sorry to hear about your brain met. I've been down that road with a brain met that was almost 3 cm. It was also in the left frontal lobe.

Since the met was too big for stereotactic radiosurgery alone (one dose of radiation), I had brain surgery in October 2008 followed by five doses of stereotactic radiotherapy in December 2008. So far it's been fine. Two weeks ago, I had another follow-up brain MRI and the area treated looks good. Also, there are no new mets.

I'm sending prayers and good vibes your way.

Joan

jml · 05-25-2010, 09:50 AM

Thanks everyone for sharing your encouraging words and success stories. I draw my strength & courage from you guys.
I'm just trying to be patient and get through these next 14 days until I'm through with all these big procedures.
June 3rd for the brain/Novalis.
June 8th for the liver/chemoembolization.
This in-between time is pretty tough, though I do feel pretty well.
I'm on my 3rd cycle of Ixempra, and it's gotten more tolerable each time. Thank God. Just glad that it's done well for me and hope it continues to do so.

Denise-I'm not familiar with TACE? is it another type of liver directed therapy? i'm anxious to have the chemo-embo done, as Full of Beans had great success with this a few years back & her liver has remained NED ever since.

Thanks again everyone.
Keep the Faith~

Jessica

Darlene Denise · 05-25-2010, 01:38 PM

Strong Jessica: Tace is transarterial chemoembolization to the liver. I send you all my best vibes and well wishes.

Darlene