Cancer 'n Me

[SoCalGal]

Decided to start a new thread. Good news/bad news.
Good news, done with Kadcyla. Bad news, progression on PET/ct

Good news, lung tumor grew so much that it's touching an air vent (might have said air pathway)
Bad news, lung tumor grew so much that my oncologist thinks a biopsy is a MUST

Good news, I have an appointment with the lung stab doctor on Monday
Bad news, my oncologist is in Europe until next month

Good news, she can't annoy me for a whole month
Bad news, I can't annoy her either.

Okay, seriously - already spoke with my internist/pulmonologist, and then met with my oncologist. She is concerned that my tumor is no longer her2+. I can't even consider what that might mean for me, unless it's turned ER+ but everything else seems even more terrifying than what already is happening. SO I'll have to get a biopsy and send to FOUNDATION ONE, on tomorrow's to-do list, as far as finding out what they require, and how to cover costs.

My pulmonary doctor does not do the biopsy, he referred me to the go-to guy (we'll see). I promised my son to stop calling him the Lung Stab doc, so now I am calling him the Lung Mohel (a funny reference if you are Jewish).

Anyone have any first hand experience with the tube down into the lung, and let's take a few snips biopsy? I understand it's fairly "easy" and supposed to be out-patient.

The part about having to wait around ALONE in recovery, until I can swallow sounds more terrifying to me than the whole thing. I mean, seriously - there must be a reversal type drug for Hollywood celebs. Would Oprah just have to lay there without Gayle until she could swallow? Would Celine Dion just have to drool and wait? What about Clooney?

My comedy game might be strong but I am feeling totally terrified, and certain that my house of cards is about to be blown away. Still haven't had the brain MRI. But every night 230 things are wrong with me, including an invisible spider web on my face, and every morning somehow I collect myself and get on with some sort of a day. (Kadcyla really took it out of me, I am still very exhausted and trying to get my physical energy and stamina back).

Thank you for being a place for me to share. 11 years...."don't write the ending" is my mantra.

The love is huge,
Flori

[Pamelamary]

Dear Flori,
Your spirit is amazing! I love the humour with which you face even bad problems. It's what keeps us sane. Good luck with the lung stab - will be thinking of you.
Best wishes..... Pam

[Cathya]

Flori; I had a lung biopsy a few weeks ago....just a stab into the lung not a ditube down into the lung. I took an Adivan (lorazepam) before the procedure and it really helped calm me down. I highly recommend it. I wouldn't be worried that the genetics might have changed as that could offer you many more treatments plus you will know definitively what you're dealing with.

my best wishes,

Cathy

[SoCalGal]

They can only reach mine by going into the lung through the nearby airway. Hopefully Monday's appointment will be reassuring, and yes, knowledge is power. Nevertheless, I am super scared...

[DianaMK]

I can see why you are terrified about Monday's procedure. Cancer sucks! Praying for you

[Cathya]

Flori;

One of the ladies taking ibrance/letrozole had to stop as her tumours were found to be triple negative. She is currently taking Halaven (eribulin). Hasn't been on it long enough yet for results but I will contact her if needs be to see how she's finding it. She has mets to the bones, skin, etc. She lives in France.

best wishes,

Cathy

[KatherineM]

Flori -

I saw your note from my cyberknife thread. Wondering what was going on with you. I am sending positive energy and lots of cyber hugs!

Don't know if you saw my update on the other thread, but the Haloven/Tykerb and cyberknife really knocked back my tumors, both brain and lungs. My radiation oncologist said she'd never seen anything like it! Meanwhile, I just submitted final grades for the semester, and have been approved for Family and Medical Leave for Fall 2018. I am sad not to be teaching next semester, but I want to have some time while I'm feeling relatively well, to get some life projects done -- like finish my book of essays, throw out tons of things, and, something I'm very excited about - making videos of me reading my favorite, and my grown children's favorite books from childhood, for my yet-unborn-grandbabies, whom I refer to as players-to-be-named-later. I got about 50 of our favorites, from picture books, to chapter books. I'm a writer and a professor of literature and writing, and these are the books that made me want to be a writer, and reading to my kids was something I did every night, so I wanted this to be a legacy of mine, to pass this on to the next generation, even if I'm not physically around when they grow up. (My daughter is 32, but not ready yet, and my son is 27, and certainly not ready!)

Anyway, I am going to make the best of the time off, and hope that I'll be able to go back to teaching in the Spring. Who knows? And, Flori, I hope that you'll be dispensing your support and wisdom for years to come. You are an inspiration!

I had Foundation One testing, but BCBS refused to pay, after two appeals, so now we are doing an outside appeal, but I don't expect much. It's about $4000, so just add it to the thousands I owe. Ha. I wish you better luck!

Rooting for you, and for everyone here. Long may we all run!

[Laurel]

Flori, that fear-monster is the worst. I am sorry the Kadcyla wasn't your answer, especially after it kicked your ass so hard. I think you will power, and drool, your way through that biopsy. I do hope its results will open up new treatments for you. Mohels have steady hands, so this Lung Mohel should be equally skilled!

Do not write the story and long may we all run...I like it. Please keep us posted. I will be praying.

[jaykay]

Ah Flori - love the mohel reference but hate the context. Will be thinking of you tomorrow.

F’ing cancer

[Carol Ann]

Thinking of you today Flori. F all of this.

xoxox

Carol Ann

[SoCalGal]

Sorry for confusion, today was just the consult with the lung stab guy. He seems okay, the whole thing is fairly routine in his world, terrifying in mine. 5% chance of something and 2% chance of something else, both would require hospitalization if occurred. Like small rip in lung or something worse that would need an air vent tube coming out of the lung or some shit like that. I recorded but haven't listened and most likely won't. 20% chance of non-definitive outcome, but that leaves 80% chance of getting what we need. He seemed to be on top of my case, and his card says he's director of lung transplant so if he can take them out and put them back I'm guessing a tiny biopsy is easy. I tried to get in for a consult at UCLA, their Interventional Radiologist doesn't do consults. So LaDEEDah on that.
At least this guy spent the time to explain it to me. None of this is good right now - I am in TOTAL RESISTANCE, but working on acceptance. Oh--He is quite handsome, so at least if it's the last face I see it's a good one.

[Cathya]

Flori; They talked about having to put a tube in if I had a lung leak too so kept me waiting for while after the procedure but it was no big deal. The hardest part for me was the breathing. They wanted me to breath very lightly and of course the minute they tell you that you need a big breath every time. That is a big part of the reason for me I needed something like adivan to relax. I doubt I would have made it without it. They did it on I think a CT scanner and it took about 40 minutes.

best wishes,

Cathy

[Colleen]

@SoCal girl cancer sucks! Hang in there and know your HER2 sisters are all thinking/hoping/wishing/praying for positive outcomes. Sending positive thoughts your way. FYI I live in SoCal too so if you ever need a shoulder to lean on I am not too far away.

[Donna H]

I luv your humor! That tends to be my go to as well.... Keep fighting and believing in a positive outcome. And yay to having a handsome doctor!!

[tricia keegan]

Flori I'm sorry you're struggling, I'd be very scared too but try to stay as strong as you've always been, we'll be holding you close.

[Laurel]

So, Flori, not sure, but thinking I missed something. Sorry, but when is your biopsy? Has it been scheduled? Glad he is a handsome mohel!!!

[SoCalGal]

Just checking in with a bad case of nerves. Bronchoscopy-biopsy aka Deep Throat Level: LUNGS, is scheduled for end of the month, on the 30th Wed. to be exact. I'm finding it so hard to stay grounded. Worse fear is waking up to a catastrophe which is ironic since I already am living a catastrophe of sorts. I finally have an idea of the size of the node, which my primary pulmonary doc has always called my Gummy Bear. So, now it's grown to two gummies long, and just less than 2 gummies wide. I feel like my lungs are big enough to handle some Gummy Bears. Not even sure what to hope for, maybe something that's treatable with targeted therapy. And for some reason it is making me so mad and contributing to my anxiety that they (my one and CT report) are noting this as possible second primary. WTF is wrong with everyone?? Okay, well thanks for letting me rant a bit. XXX XXX

[Carol Ann]

You can rant any time you need to!! This all sucks big time. What they wrote on the report would make me mad and anxious too! Good grief!!


Carol Ann

[Pamelamary]

Breathe deep, Flori! Will have all digits crossed for you........ Pam

[Donna H]

Totally understand your need to vent. Sometimes we just need a good rant and rave. Thinking good thoughts and sending positive energy your way thru cyberspace.

[KatherineM]

I am sending you lots of positive anti-gummy bear energy. I'm sort of in a similar boat. Lung mets were smaller on last scan (March), and my cough and shortness of breath were gone, but now, cough is back. So, the question is, if Haloven and Tykerb are working on my brain mets, but not working for lung mets anymore, then what can be done? I have a bunch of small nodes in my lungs, so radiation is not an option.

Anyway, Flori, this is all to say that I am with you, and will send especially strong positive energy on the 30th. It is strange how quickly certain aspects of this become routine; you simply learn to live with it--until the next shoe drops. Then, it's either the end of the world, or we adapt.

Love and tidings to all my HER2 sisters!

Katherine

[Cathya]

Katherine;

ASCO begins June 1st. I hope there's lots of news and information on what options you might have.

Cathy

[Laurel]

Flori,


I saw on Cool Breeze's thread where you told Ann you are no longer on Kadcyla. I forgot that! Sorry! I think your mohel stabby-thing is tomorrow, so wishing you good fortune and a quickie, no-pain, no-drool, no-FEAR experience that gives you some welcomed and much needed answers.


I did not realize that you are not on any anti-HER2 protocols presently. Is that correct? No wonder you feel anxious and nervous. Could it really be that your gummy bear is no longer Her2+???? Should we hope it is ER+ ???


Thinking of you, kiddo.

[SoCalGal]

Quick update - home from Bronchoscopy. Doc said it went well. Throat pretty sore but other than that I’m okay. In bed drinking throat coat tea and honey. Feeling grateful and not hateful for a change. Will update when my thinking cap is on. Xxxxxxx❤️❤️❤️❤️

[Carol Ann]

Oh so glad that's OVER with!! And that it went well. Such a huge hurdle to get over.


Thanks so much for posting ... rest and rest and rest some more now!


<3<3<3


Carol Ann

[Laurel]

Whew! Happy to hear it is over with and that it wasn't a horror. I echo Carol Ann, rest. You've earned it.

[Cathya]

Such a relief for you that it's over! So happy. I'm so looking forward to hearing about the results and if there's any changes to your pathology. I've been doing so much reading and researching reports posted all over the place. It's an exciting time for us and ASCO should offer lots of hope. Thinking of you. Get a good rest.

Cathy

[Posts]

Flori, Flori, Morning Glory, just saw your post and sending positive thoughts for good news. Rest and take care of you.

Sassy

[Catherine]

Flori, what’s a girl to do? Your humor is good for all of us! As, Pam says, so is breathing! Sending love and support!

[Melissa]

You're such an amazing person! I can count on you to show such good spirit and give cancer hell!
Thanks for all you inspiration -

[StephN]

Oh gosh! Been away for a few weeks and working on catching up here. You have always been a great advocate for yourself and good at finding ways forward through a very thick forest.
Nice to know the "lung stab" procedure is behind you. How long does the Foundation One report take? More waiting equals The Pits! Wish I could add something helpful, but your current situation is new territory to me.

So I will send wishes for peaceful thoughts along with gentle hugs.

[SoCalGal]

Hospital path of lung biopsy shows metastatic breast cancer, ER/PR Neg and HER2 positive. So, same old same old. Proliferation rate is high at 70%. Last rate was 24% but that was from 2002. Kadcyla did not do the trick for me.
FOUNDATION ONE results due by 6/20. I'm going to see Dr Pegram up at Stanford Women's Cancer Center on 6/27 and pray he helps me hatch a plan.

I've suddenly had lymphedema to my left arm, some WEIRD skin sensitivity and edema to my right breast (no mets there) plus random edema everywhere I have a surgical scar from reconstruction back in '02/'03. And tonight I have a tiny blister, so I'm thinking shingles or skin mets?!

Stay tuned, it's NEVER a dull minutesville over here.
Sigh...
Flori

[Lucy]

I'm sorry it wasn't better news but hopefully you can find a treatment plan that will work going forward. Keeping you in my thoughts and prayers. Please keep us posted.

[Carol Ann]

Oh Flori so sorry it wasn't better news. Praying your doc can help you plan an attack that will send the beast back to sleep.



Carol Ann

[Laurel]

Bummed about this news, Flori. I hope Stanford has some ideas and you will have a new plan in place asap. I am praying and in your corner!

[StephN]

Looks like a good plan to see the very smart Dr. Pegram. So happy you could get an appointment. He is a HER2 rock star.

Don't know what to say about the strange skin stuff. Hope it is just a case of something like hives, and will resolve easily.

[Cathya]

Flori;

I emailed you. Having your Foundation One results to discuss with Dr. Pegram is fantastic. Have you seen him before? Plus knowing absolutely the results of your biopsy confirms exactly what you are dealing with. All of this should result in a plan for you going forward. The waiting is so hard.....worrisome and stressful I know but your appointments are coming soon. We're all thinking of you.

God bless

Cathy

[KatherineM]

Flori - Good the procedure is behind you! Sorry to hear about lungs. Will your insurance cover Foundation One testing? Mine (BCBS) didn't. Went through two appeals, and now an independent review. As if being ill wasn't enough!

I am always happy to hear from you! My lung and brain mets are stable so far, on Haloven and Tykerb. I'm getting more numbness in my feet and hands, and now on the front side of my shins. Weird!

Much love to you, and to all of the women here!

[Cathya]

Flori;

It's been a while since you posted and I'm wondering what decision you made re: treatment and how you are doing?

Best wishes,

Cathy

[Laurel]

Been keeping an eye out for an update from you, too, Flori. Praying you got a new direction and plan.

[SoCalGal]

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

[Carol Ann]

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

[Donna H]

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

[Midwest Alice]

Sending prayers and hugs your way Flori.

[Laurel]

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.

[donocco]

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

[europa]

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.

[Lani]

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".

[Becky]

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

[Juls]

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

[jaykay]

Hey Flori,

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

[SoCalGal]

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

[Catherine]

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!

[Laurel]

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.

[Laurel]

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

[Becky]

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

[SoCalGal]

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!

[Laurel]

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.

[SoCalGal]

Thanks Laurel - I appreciate the support <3

[Carol Ann]

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


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


Carol Ann

[Cathya]

Flori;

I didn't realize you were having such difficulties in getting into the trial. If you were to call Pegram could he speed things up? I'm really praying for a positive conclusion to this for you. I sure understand your frustration.

Cathy

[Juls]

Hi Flori,

I feel your frustration!

Juls


(Like you - still waiting for next move. Only plus is I'm on Aromasin while I wait.)

[SoCalGal]

THIS IS BIG PHARMA:

https://www.businesswire.com/news/home/20180514006244/en/

May 14, 2018 05:00 PM Eastern Daylight Time
VANCOUVER, British Columbia & TOKYO & BASKING RIDGE, N.J.--(BUSINESS WIRE)--Zymeworks Inc. (NYSE/TSX: ZYME), a clinical-stage biopharmaceutical company developing multifunctional therapeutics, and Daiichi Sankyo Company, Limited (Daiichi Sankyo) announced today that they entered into a new license agreement, building upon their 2016 cross-licensing and collaboration agreement.

“With a successful track record and our first bispecific antibody incorporating the Azymetric and EFECT technology having achieved a key research milestone in 2017, we look forward to adding two more bispecific compounds to our pipeline,” said Antoine Yver, MD, MSc, Executive Vice President and Global Head, Oncology Research and Development, Daiichi Sankyo. “We are exceptionally impressed with the robust impact that Zymeworks’ technology brings to antibody development.”

Under the terms of the second agreement, Daiichi Sankyo will acquire licenses to Zymeworks’ Azymetric™ and EFECT™ technology platforms to develop two additional bispecific antibody therapeutics.

In exchange, Zymeworks will receive an upfront technology access fee of US$18 million and may receive up to US$466.7 million in potential clinical, regulatory and commercial milestone payments. In addition, Zymeworks will receive up to double-digit tiered royalties on global product sales.

“Expanding our relationship with a leading global pharmaceutical partner like Daiichi Sankyo is extremely satisfying as it underscores the power, versatility, and attractiveness of our technology platforms,” said Ali Tehrani, Ph.D., President and CEO of Zymeworks. “Having already used our platforms to discover one bispecific antibody, Daiichi Sankyo now has increased access to our technology to create additional therapeutic candidates. We are pleased to be working with a healthcare pioneer with a proven track record of over 100 years of innovation leading to major breakthroughs in patient care.”

Zymeworks and Daiichi Sankyo began working together in September 2016 through an agreement to develop one bispecific antibody therapeutic for which Zymeworks is eligible to receive preclinical, clinical, and commercial milestones payments, as well as up to double-digit tiered royalties on global product sales. Additionally, Zymeworks obtained a license to certain immuno-oncology antibodies from Daiichi Sankyo, with the right to research, develop, and commercialize multiple bispecific products globally in exchange for royalties on global product sales.

About the Azymetric™ Platform

The Azymetric platform enables the transformation of monospecific antibodies into bispecific antibodies, giving them the ability to simultaneously bind two different targets. Azymetric bispecific technology enables the development of multifunctional biotherapeutics that can block multiple signaling pathways, recruit immune cells to tumors, enhance receptor clustering and degradation, and increase tumor-specific targeting. These features are intended to enhance efficacy while reducing toxicities and the potential for drug-resistance. Azymetric bispecifics have been engineered to retain the desirable drug-like qualities of naturally occurring antibodies, including low immunogenicity, long half-life and high stability. In addition, they are compatible with standard manufacturing processes with high yields and purity, with the potential to significantly reduce drug development costs and timelines.

About the EFECT™ Platform

The EFECT platform is a library of antibody Fc modifications engineered to modulate the activity of the antibody-mediated immune response, which includes both the up- and down-regulation of effector functions. This platform, which is compatible with traditional monoclonal as well as Azymetric bispecific antibodies, further enables the customization of therapeutic responses for different diseases.

About Zymeworks Inc.

Zymeworks is a clinical-stage biopharmaceutical company dedicated to the discovery, development and commercialization of next-generation multifunctional biotherapeutics. Zymeworks’ suite of complementary therapeutic platforms and its fully-integrated drug development engine provide the flexibility and compatibility to precisely engineer and develop highly-differentiated product candidates. Zymeworks’ lead product candidate, ZW25, is a novel bispecific antibody currently being evaluated in an adaptive Phase 1 clinical trial. Zymeworks’ second product candidate, ZW49, capitalizes on the unique design and antibody framework of ZW25 and is a bispecific antibody-drug conjugate, or ADC, armed with its proprietary ZymeLink™ cytotoxic payload. Zymeworks is also advancing a deep pipeline of preclinical product candidates and discovery-stage programs in immuno-oncology and other therapeutic areas. In addition to Zymeworks’ wholly owned pipeline, its therapeutic platforms have been further leveraged through multiple strategic partnerships with global biopharmaceutical companies.

About Daiichi Sankyo Cancer Enterprise

The mission of Daiichi Sankyo Cancer Enterprise is to leverage our world-class, innovative science and push beyond traditional thinking to create meaningful treatments for patients with cancer. We are dedicated to transforming science into value for patients, and this sense of obligation informs everything we do. Anchored by three pillars including our investigational Antibody Drug Conjugate Franchise, Acute Myeloid Leukemia Franchise and Breakthrough Science, we aim to deliver seven distinct new molecular entities over eight years during 2018 to 2025. Our powerful research engines include two laboratories for biologic/immuno-oncology and small molecules in Japan, and Plexxikon Inc., our small molecule structure-guided R&D center in Berkeley, CA. Compounds in pivotal stage development include: DS-8201, an antibody drug conjugate (ADC) for HER2-expressing breast, gastric and other cancers; quizartinib, an oral selective FLT3 inhibitor, for newly-diagnosed and relapsed/refractory acute myeloid leukemia (AML) with FLT3-ITD mutations; and pexidartinib, an oral CSF-1R inhibitor, for tenosynovial giant cell tumor (TGCT). For more information, please visit: www.DSCancerEnterprise.com.

About Daiichi Sankyo

Daiichi Sankyo Group is dedicated to the creation and supply of innovative pharmaceutical products to address diversified, unmet medical needs of patients in both mature and emerging markets. With over 100 years of scientific expertise and a presence in more than 20 countries, Daiichi Sankyo and its 15,000 employees around the world draw upon a rich legacy of innovation and a robust pipeline of promising new medicines to help people. In addition to a strong portfolio of medicines for hypertension and thrombotic disorders, under the Group’s 2025 Vision to become a “Global Pharma Innovator with Competitive Advantage in Oncology,” Daiichi Sankyo research and development is primarily focused on bringing forth novel therapies in oncology, including immuno-oncology, with additional focus on new horizon areas, such as pain management, neurodegenerative diseases, heart and kidney diseases, and other rare diseases. For more information, please visit: www.daiichisankyo.com. Daiichi Sankyo, Inc., headquartered in Basking Ridge, New Jersey, is a member of the Daiichi Sankyo Group. For more information on Daiichi Sankyo, Inc., please visit: www.dsi.com.

[Donna H]

WOW - talk about big business!!

[StephN]

Getting caught up. WOW to it all and CRAP on a crapstick to it all.
I know you are trying to enter the trial that has the best looking chance at turning around the disease, but that bit of tumor they want may break the deal.

About the flair. Now many, many years post gamma knife, my zapped brain spots STILL read with flair after a 3-T brain MRI. The area of flair never increases and is mainly showing in the smaller of the two areas. We basically ignore it.

About the Myth of Sisyphus rock you are shouldering uphill. That Greek king was being punished with that task, and I have no idea why we cancer patients need to get in line with our boulders to push uphill, but that is part of the deal, unfair as that may be. Part of the absurdity of being, seems to me. Even this far out from active treatment my "rock" is still not far from view reminding me I have to stay as strong as possible in every way, and ready for anything.

About hypnotherapy. I have done this. Was an interest of mine long before cancer showed up, so I had this ability to put myself into a short trance, and give my body instructions. Not something I have shared until now, but I bring it up because I got benefit from it and Donoco may have some tips that could have a positive effect for anyone open to that. (I also find that dancing is a kind of trance, and can be theraputic.)

This rambling post may not be of value, but I want you to know that I am sending the Universe instructions to help you!

[Laurel]

Thinking of and praying for you, Flori! Hoping this is the week you get some much needed good news!

[KatherineM]

Rooting for you, Flori! I hope you can find a treatment that works, and that supports and enhances your quality of life. Much love and light. - Katherine

[donocco]

As far as hypnosis goes there are books on Amazon on self hypnosis. I used to iuse my voice on a tape recorder to hypnotize myself but it seems tape recorders are obsolete. I dont know why. Everything cant be computerized. Im going to look for one. Im sure it is still possible to buy one.

When I went to the hypnosis Institute I thought of starting a hypnosis practice but it is easier said than done. Those who feel they can benefit from hypnosis should buy one of these books and consider "finding " a tape recorder. There are books about "cancer hypnosis" where you "hypnotize" the T cells to attack the cancer cells. This is theoretical but it may have some beneficial effect. During my classes at the Hypnosis Motivation Institute in Tarzana ive been put into a hypnotic state by experienced hypnotists. It is extremely relaxing. You are aware of everything around you.

Paul

[Laurel]

Hey Flori! Just a quick shout out to say "hey!" I am thinking of you, my friend. Praying for good news on the trial front.

[SoCalGal]

I’m supposed to start the trial (Zw25) on Monday. I will post a new thread and share my recent clinical trial research in case others are looking. Meantime, I just got a garbled voice mail from the phase1 coordinator - asking for yet one more thing. So I can’t feel excited until these people actually start my infusion. But I am painting and writing again. Much love to all...flori

[Laurel]

Man, Flori, the wheels grind slowly! Glad you have something with which to attack that beast nearly loaded and that your creativity is flowing again!

[StephN]

My dear friend!
Let us know when the big day finally comes/came. Keeping you in my fondest thoughts for some progress with this new trial.