Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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...

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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!

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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

F’ing cancer

Re: Cancer 'n Me
 

Thinking of you today Flori. F all of this.

xoxox

Carol Ann

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

@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.

Re: Cancer 'n Me
 

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!!

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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!!!

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

Katherine;

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

Cathy

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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❤️❤️❤️❤️

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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

Sassy

Re: Cancer 'n Me
 

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!

Re: Cancer 'n Me
 

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 -

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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!

Re: Cancer 'n Me
 

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.

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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!

Re: Cancer 'n Me
 

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

Re: Cancer 'n Me
 

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