Re: Cancer 'n Me
 

I've narrowed it down to two trials - DS8201a (an ADC) or ZW25 which I have to find out more about on Tuesday.

And my brain MRI shows a “flair” signal, which is my latest curve ball to figure out. Rads Onc who is lovely, said we need to talk to Brain Surgeon from 2008 gamma Zappa and that 10 years would be extraordinary to suddenly have a dormant cell awaken.

My emotional state is very poor. I don’t know anyone who would be good at this - TDM1 didn’t work, FOUNDATION ONE biopsy revealed nothing new or helpful (her2+++ and ER/PR neg), clinical trials identified, but possible brain activity could have me rejected from trials. I no longer sleep when I sleep.

It is maddening what patients must go thru to move things forward. I see a leading oncologist who hardly gives me the time of day. She is clearly overworked and burned out and so her patients suffer when I'm sure she thinks the opposite. She returns calls as late as 10PM which doesn't do anyone any good. She has not helped me find a trial; my consult up at Stanford, my own research, and the help of dear friends has helped me figure it out. I can't over stress the importance of having your next steps laid out, even if that changes, to have a plan is king.

I have weird things going on such as sudden lymphedema in my affected arm, something bothering my UNAFFECTED breast - ONC thought maybe neuropathy, have had a bunch of migraines, groin neuropathy and a groin swell that my ONC says is similar to a hernia but nothing has popped all the way out. And now a brain FLAIR signal. so WTF???

I think it's all cancer related, and the docs just don't know. SO my hope is that I can choose a trial by mid next week, and enroll, get accepted, start, have it not kill me, have it maybe even WORK, have my brain UNflair its signal and all other weird shit go away or not get worse.

I'd like to feel emotionally okay enough to resume some enjoyment in my life again. I hope to learn this year's flashmob dance routine, hope to leave my house for other things than scans, rehab exercise, dr appointments, PT, and Whole Foods. I hope the Amazon Prime guy moves on, and I shop in the world again. I'd like to go thru most of the day without Ativan, getting dizzy, and feeling scared out of my mind. Oh, and I would not mind meeting a guy who didn't bug the crap out of me.

Is that all so much to ask? Maybe so...meantime, I feel nothing but love and gratitude for everything and everyone here.
<3<3<3<3<3<3<3<3 <3<3<3<3<3<3<3<3

Re: Cancer 'n Me
 

Oh Flori ... so hoping you can get some moving forward news on Tuesday/next week and start something new that WORKS.


I am so sorry about the brain flare, and all the other physical problems and symptoms, lymphedema, etc ... WTF is right!!


NONE of what you want is too much to ask!!!



Sending every positive thought and prayer I can for you, dear Flori!! <3<3<3<3<3<3<3<3


Carol Ann

Re: Cancer 'n Me
 

Sending hugs and positive energy your way. You are a fierce woman.

Re: Cancer 'n Me
 

Sending prayers and hugs your way Flori.

Re: Cancer 'n Me
 

Flori,

I am sorry I did not respond last night, but I just had to digest it a bit. Well, it really is a shit-storm isn't it? Still, the brain "flair" feels "wrong" for some reason. Thinking it is probably BS. The other weird manifestations can be cancer-related or cancer-jangling-the-hell-out-of-my-last-nerve-thank-you-very-freakin'-much!!!! I fall in the latter camp and would be equally freaked out and utterly exhausted from the battle to get another chance to fight another round with SOMETHING! Don't these docs know you have "just begun to fight!?????"

I cannot fully comprehend.

Flori, I love your honesty, valor, wry wit and steadfast love of life. I will pray you get your treatment plan and your man (that you can STAND). You deserve another whack at that sneaky foe. Please, please keep us posted.

Re: Cancer 'n Me
 

Flori

I think you live in southern California. In 2006 I studied hypnosis at the Hypnosis Motivation Institute in Tarzana and graduated in 2007. If you want I can teach you some relaxation techniques. It might help you relax and unwind. Hypnosis is a powerful tool. Im very sorry yo hear what is happening.

Paul

Re: Cancer 'n Me
 

Oh Flori, I am so sorry. And of course I sending you all the support and good vibes. A brain flare doesn’t always mean cancer. It could be a TIA. I had that. It was tiny. Like 2mm. But it was enough to cause all sorts of weird crap. I which all resolved itself. And it could be nothing.
If I were you I would go out and get yourself another onc. I also had a very posh onc but he was way too busy. So I found a younger one that is a cancer geek. She is not as famous but she’s available via cell which means the world.
I hope a clear path forward shows itself soon for you.

Re: Cancer 'n Me
 

FLAIR abnormalities are found on brain mris on on many "normal" people --especially if mri done at 3t rather than 1.5 T(you did not specify which you had)

http://www.ajnr.org/content/30/5/911

Normal Findings on Brain Fluid-Attenuated Inversion Recovery MR Images at 3T

Abstract

BACKGROUND AND PURPOSE: Fluid attenuated inversion recovery (FLAIR) MR imaging of the brain has become a routine tool for assessing lesions in patients with suspected neurologic disorders. There is growing interest in 3T brain FLAIR MR imaging but little normative data are available. The purpose of this study was to evaluate the frequency and topography of cerebral hyperintensities seen with FLAIR MR imaging of the brain at 3T in a normal population and compare those findings to 1.5T.

MATERIALS AND METHODS: Whole-brain 2D FLAIR MR imaging was performed in 22 healthy controls (mean age, 44 ± 8 years; range, 30–53 years) at 3T. Fifteen of these subjects also underwent 2D FLAIR at 1.5T, with similar optimized parameters and voxel size. Cerebral hyperintense areas, including discrete foci, anterior and posterior periventricular capping, diffuse parenchymal hyperintensity, septal hyperintensity, corticospinal tract hyperintensity, and CSF flow artifacts were assessed. The Spearman rank test assessed the correlation between discrete hyperintense foci and age. The Wilcoxon signed rank test compared foci detectability at 3T versus 1.5T.

RESULTS: FLAIR at 3T commonly showed hyperintensities such as discrete foci (mean, 10.68 per subject; at least 1 present in 68% of subjects), anterior and posterior periventricular capping, diffuse posterior white matter hyperintensity, septal hyperintensity, corticospinal tract hyperintensity, and ventricular CSF flow artifacts. FLAIR at 3T showed a higher hyperintense foci volume (170 ± 243 versus 93 ± 152 mm3, P < .01) and number (9.4 ± 13 versus 5.5 ± 9.2, P < .01) than at 1.5T. No significant differences (P = .68) in the length/diameter of individual discrete hyperintense foci were seen between 3T and 1.5T. Discrete foci volume (r = 0.72 at 3T, r = 0.70 at 1.5T) and number (r = 0.74 at 3T; r = 0.69 at 1.5T) correlated with age to a similar degree on both platforms. All discrete foci were confined to the noncallosal supratentorial white matter. The other nonfocal hyperintensities (anterior and posterior periventricular capping, diffuse parenchymal hyperintensity, septal hyperintensity, corticospinal tract hyperintensity, and CSF flow artifacts) were generally more common and prominent at 3T than at 1.5T.

CONCLUSIONS: Discrete and diffuse parenchymal brain white matter FLAIR hyperintensities are more common and prominent at 3T than at 1.5T in healthy volunteers.

Materials and Methods

Subject Characteristics and Image Acquisition

We examined 22 adult healthy volunteers (mean age, 44 ± 8 years; range, 30–53 years). This Health Insurance Portability and Accountability Act−compliant study included institutional review board (IRB) approval and informed consent. Participants for this study were recruited by using an IRB-approved advertisement that was posted in a local newspaper and our hospital Website. A telephone interview was conducted by using a questionnaire, and any potential participants with a history of major medical, neurologic, or neuropsychiatric disorders and current or previous history of substance abuse were excluded. For example, questions were asked to exclude subjects who had a history of hypertension, diabetes, head trauma, migraine, learning disabilities, depression, bipolar disorder, alcohol/tobacco/recreational drug abuse, or any conditions that would preclude MR imaging. Regarding tobacco, we excluded any individuals with current or recent (within 5 years) use. Entry into the study was on the basis of patient-reported history: no formal bedside physical or neurologic examination or neuropsychiatric testing was performed. Imaging of the brain was performed in 15 of these subjects (mean age, 43 ± 8 years; range, 30–53 years) at both 1.5T and 3T; an additional 7 subjects were interested in having only 1 scan due to the time commitment and thus were scanned at 3T only. There was no significant (P = .75) age difference between the subject groups studied at 1.5T and 3T. Subjects underwent 2D fast FLAIR MR imaging of the brain; technical details on the scan protocol are provided in Table 1. Due to the potential at 3T to exceed specific absorption rate, patient safety limitations, and scanning time considerations, TR, TE, and echo-train length varied between the 2 platforms, though voxel size was nearly equivalent.11

Table 1:
MR imaging protocol and technique

Due to a change in scanning protocol early in the project, the section thickness for the scans was slightly variable between but generally not within subjects. Of the total 22 subjects scanned at 3T, 18 were scanned with the main protocol shown in Table 1 by using 2-mm-thick axial sections and 4 were scanned with a similar protocol by using a 3-mm section thickness. Of the 15 subjects scanned at 1.5T, 14 were scanned with the 2-mm protocol and 1 subject was scanned with the 3-mm protocol. Only 1 subject scanned at both 1.5T and 3T had variable section thicknesses between platforms; but because this subject did not show any discrete hyperintense foci, we did not exclude this subject from the analysis. Otherwise, the scanning protocol for the 22 subjects was similar within and across subjects.

Image Analysis

Image analysis was performed by using the software package Jim, Version 3.0 (Xinapse Systems, Northants, UK; http://www.xinapse.com). Scans were anonymized and randomized for analysis. Discrete areas of increased signal-intensity abnormality on FLAIR images, referred to as “hyperintense foci,” were identified by the consensus of 3 trained observers and confirmed by an experienced observer to resolve any discrepancies. We avoided using the term “lesions” to describe the foci because of the normative population being studied. The number and volume of FLAIR hyperintense discrete foci were assessed through an edge-finding tool based on local thresholding that was applied to each axial section to identify discrete foci contours. Manual adjustments were applied where necessary. The maximum width or length of each hyperintense focus and the anterior hyperintense capping of the ventricles were assessed with a measurement tool. Hyperintense areas not well suited to quantitative analysis, such as diffuse white matter hyperintensity, septal hyperintensity,4 corticospinal tract hyperintensity,4 and ventricular CSF flow artifacts,12 were qualitatively described.

Statistical Analysis

The Spearman rank correlation analysis was used to assess the relationship between FLAIR discrete hyperintense foci number or volume and age. Wilcoxon signed rank test was used to assess the difference between age and discrete hyperintense foci detectability on the 1.5 and 3T platforms. A modified Wilcoxon test13 for clustered data was used to assess the difference between discrete hyperintense foci length on the 1.5 and 3T platforms. The Choi test14 assessed the differences between correlations on the 1.5T versus 3T platform. For all analysis, a P value < .05 was considered statistically significant in this exploratory study.

[I]If becomes difficult to resolve what your mri findings mean, suggest you consult Penny Sneed MD @ UCSF whose specialty of 35 yrs is the diagnosing and treatment of brain mets from breast cancer. Thoughtful, forthright, no-nonsense and reassuring to those "thinking" the worst. I learned from her that sometimes it is better to go with the older technology 1.5 vs 3T brain MRI and FLAIR is often
"normal".

Re: Cancer 'n Me
 

I am thinking and praying for you Flori girl. I just want you to know I am here for you too.

Re: Cancer 'n Me
 

Hi Flori,
Thinking of you.
Good luck tomorrow.
Juls

Re: Cancer 'n Me
 

Hey Flori,

Thinking of you and hoping for some positive news re:trials and everything else. You are an incredibly brave lady.
Janis

Re: Cancer 'n Me
 

I met with the USC trial doc. She is young, smart and although she's not the lead investigator she would take care of me while on the ZW25 trial. It is a bi specific antibody, fully humanized and stops Her1,2 dimerization. Infusion. Side effects will be similar to herceptin/perjeta. Results hopefully better. It's single agent. I'd like to try it, I signed papers to start the process, and see if the sponsors accept me.

I also met with my brain surgeon. The plan is to repeat the MRI in 8 weeks MRI with SPECT and he says he'll have a better idea of what's going on then. It could be nothing - the only way to tell is wait and see. Fun.

Hoping the FLAIR doesn't get me booted from the trial. I am so anxious to get back on treatment and get things managed. Its over 3 months off treatment and that's just asking for trouble.

Yes, I'm scared. Of everything. I have a note on my refrigerator that says "BE BRAVE"
I'm trying.
<3<3<3

Re: Cancer 'n Me
 

Late night hello to you Flori. I wish I could drive over and we could kill a good bottle of wine. You are so strong and so resourceful! Your humor and insight are an inspiration. Sending all the love and support I can!! Keep us posted we are all right behind you!

Re: Cancer 'n Me
 

Flori,

The trial sounds very promising. I'll pray nothing hinders your acceptance into it.

When the Fear Monster hits I sing the chorus of this song over and over. It raises my spirits and comforts me.

https://www.youtube.com/watch?v=_UglO7SGUWk

Hang in there, my brave friend.

Re: Cancer 'n Me
 

Hey there, Flori-girl,


How are you? When you will hear from the trial guru's regarding acceptance? I am hoping for good news!


Laurel

Re: Cancer 'n Me
 

Be brave? You ARE brave. No doubt about it.

Re: Cancer 'n Me
 

Just a quick update - I am beyond frustrated, it seems the trial people can do whatever the hell they please whenever the hell they want. I don't know if all trials move at a snails pace but this certainly is. There's a laundry list of things I need to submit for trial, (CT, ECHO, EKG, blood draw) and a PHASE I coordinator who is supposed to schedule and no doubt, who already hates me. I try so hard to be nice but he's a pussy and in my opinion needs to grow a set and fight for me. They want a tumor sample. The slides from my biopsy are not enough. They want a block so they can do their own testing, which has simply NOTHING to do with qualifying for their drug; ZW25. They just want HER2 tumor sample so they can try to figure out what other drugs they can develop NOT TO CURE US But ---to make money. So, that's fine. But for peeps like me, where I don't have a bunch of tumors on ice for them, they should just say YAY or NEIGH so I can move on. And no one's addressed the brain MRI results, so not sure to bring up or shut up. I'M INCREDIBLY PISSED AT EVERYONE AND EVERYTHING. In case you couldn't read [between] the lines....

16 weeks off treatment...I may take another trial if these idiots don't give me an answer tomorrow!

Re: Cancer 'n Me
 

Man, Flori, I am spiitin' mad right along with you! Screw science & the white horse they ride in on! Sheesh. I want to cuss a blue streak!

Ok. Instead I will get on my knees right now & pray that the mercenary scientists see the value in placing you in their study/trial. It truly is maddening. Got your back in prayer. It is all & everything I can do for you.

Re: Cancer 'n Me
 

Thanks Laurel - I appreciate the support <3

Re: Cancer 'n Me
 

What Laurel said... and WT?! What is their problem??!!!!


All prayers, good energy, you name it, winging their way to you!!


Carol Ann