One Spot, Two Spot, Old Spot, New Spot
 

This month marks 7 years stage four, 6 years post gamma knife, and 18 years since my original diagnosis. Just wanted to check in and get some feedback from the wisest survivors I know...

The facts:
1. I feel fine, and most of the time can live a normal quality of life, all things considered.
2. I am having slow and steady progression.

Am considering jumping to TDM1, and seeing if it will give me a remission. My onc is fine with me staying on the HAPX, but as my daughter says, her bar is too low. I have been basically stable and/or slow progression for at least a year and have taken several short breaks from treatment.

Should I try TDM1? Does it have a better chance of working with less disease, or should I wait a few more months, "saving" it till later? I am always waiting for that other shoe to hit me. Please weigh in.

I'm on the fence. Or maybe it's the ledge...
~SoCalGal

****By the way, *NOT* using my real name is very much appreciated - am trying to keep some degree of privacy from my community work. Thanks so much...

Re: One Spot, Two Spot, Old Spot, New Spot
 

Yes, do the T-DM1. It may knock everything out for you. For good.
Wishing you well,
Karen

Re: One Spot, Two Spot, Old Spot, New Spot
 

You've got a lot more years under your belt than I do under mine. That said, I might be inclined to coast a bit longer on the current regimen. To me it looks like you're basically stable. I've been told that 5 mm is a tiny lung met not worth worrying about.

Remember that people who read scans are very defensive. They don't want to miss anything that might be problematic later, so they bring up everything they see. I often wonder what would "light up" on women of a certain age in the absence of a cancer diagnosis. Glucose avidity is not diagnostic of cancer. It just means there's inflammation there.

My personal feeling is that I don't want to run through the available treatments too fast. But I also see the other side. Kadcyla "might" be a home run for you. It is for some people.

It's your call. I don't think either choice would be wrong.

Re: One Spot, Two Spot, Old Spot, New Spot
 

SoCalGal, I hear your dilemma! My initial reaction to your post was a gut feel that TDM-1 would be a good option for you, but then Amy weighed in with sound advice too. It definitely sounds as though the biology of your tumours is that they are slow moving. I was recently considering starting TDM-1 myself because of progression in my liver tumour, but I'm opting for liver resection first. But if I hadn't been able to have surgery (couldn't have SBRT as tumour too close to bowel), I was definitely going to start TDM-1.

Best wishes for a decision that will work for you.
Marie

Re: One Spot, Two Spot, Old Spot, New Spot
 

Hello friend who shall remain nameless!
I am not qualified to offer suggestions or advice from where I sit. But I can tell you that I'm a great believer in "signs". Where you try to keep your mind open for some comment that gives you clarity. I know it sounds kinda " la la land"-ish but sometimes I can be so deep into something that it takes some random input to give me an epiphany. Have you taken your dilemma to another physician for new input? A fresh opinion?
It's so hard being in that space between decisions
Keep the faith

Re: One Spot, Two Spot, Old Spot, New Spot
 

Bonnie's comment about the "space between" is so apt! I've been thinking a lot about liminal space--being on the threshold between one metaphorical room and another. In truth, every living thing exists in a liminal space between the first breath in and the last breath out. We all have to navigate that. But those of us who have Stage IV cancer can't forget it for long.

I also like Bonnie's suggestion about intuition or new insight. When I had progression two years ago my oncologist set up second opinion appointments for me at the other two big research hospitals in Boston. It was very helpful to have other experts look at my records and talk to me about how they see my situation.

Re: One Spot, Two Spot, Old Spot, New Spot
 

Hi

Although I have "known" you forever, are you or were you ever hormone positive? I am just thinking out loud on whether you should add an AI (if postmenopausal). Even if you started out negative, you may no longer be hormone negative. And your bones are involved which gets me thinking because hormone positive BC likes the bones very much. Let me know your thoughts and we can discuss this on your thread.

Big hugs.

Re: One Spot, Two Spot, Old Spot, New Spot
 

Hi 'Morning glory' (hope that's acceptable:),

I'm voting for T-DM1. It's better to take care of those spots when they are small. And there will be other newer drugs in the future...

Sending you good vibes.

Re: One Spot, Two Spot, Old Spot, New Spot
 

I am happy you feel fine but I don't like you having progression. I also vote for TDM1. Maybe a rescan in a month to decide? Don't forget you will have a washout period so you cannot wait too long either. Sending hugs. Michka

Re: One Spot, Two Spot, Old Spot, New Spot
 

Hi SoCal Gal -

Yes, it is difficult to make a decision based on non-committal language from those experts who read our scans. More like they are throwing the ball into our court for patient and onc to dope out a treatment plan. And the more old spots/tumor scars we have the harder it gets.

So, your Dr. Seuss take off is just how it often feels when a choice point is reached. Will the next go round be the "hat trick" we are looking for? Can we switch out a drug and try to get a better read on those spots?

I would go with the rising markers. See what you can do to reverse that trend. They check blood work more often than we get scans, at least in my case.

Per Becky's query, do you have any tumor that could be checked for hormone changes?

All the best wishes coming zipping down the coast targetting you!

Re: One Spot, Two Spot, Old Spot, New Spot
 

Yes, yes, yes, YOU! Jackie, Becky, Steph and probably some I am not recalling at the moment, all have great advice.

Me? I had 3 oncs and ea had his own radiologist. I carried my scans to ea and 2 out of 3 concurred. So I went with that.

They were independent and unaware of other's input.

That's what I'd do.

I love you, YOU...

ANDI

Re: One Spot, Two Spot, Old Spot, New Spot
 

Thank you trusted friends. I don't have any "fresh" tumors nor any easily obtained from soft tissue. I've never been PR/ER positive, but have tried inhibitors (arimidex I think) in the past, my previous onc thought maybe I was false positive. I still don't know what I want to do - basically don't like any of the choices - feeling tired of treatment, you understand.

Trying to feel celebratory on surviving 7 years, stage FOUR but really just feeling sick and tired of the whole deal!!

Will procrastinate a few more days.
<3
Your Pal,
A So Cal Gal

Re: One Spot, Two Spot, Old Spot, New Spot
 

HEY, PAL!

FORGIVE ME PLEASE.

MANY, MANY KUDOS DUE YOU, FAIR LADY!!!!!!!!!!!

MOST FABULOUS WARRIOR WOMAN EVER!

SMART, FIESTY, ADORABLE AND MUCH LOVED.

YAY, PAL!!!!!!!!!!!!!!!!!

Miss you... Love you... ABB

Re: One Spot, Two Spot, Old Spot, New Spot
 

Procrastinating can be good too. Clear your mind. Make room for new insights
Keep the faith

Re: One Spot, Two Spot, Old Spot, New Spot
 

My recent experience. I was on Perjeta, Herceptin and Arimidex. All was clear for seven months, then BAM! After almost five years, the game changer--it spread--behind my back! So if you know your enemy, and we do: HER2 is sneaky, a chameleon, a thief. I would love to hear that you kill it all; slow soon becomes...what I got.
All we can is relate our experiences and that's mine.
Best,
Karen

Re: One Spot, Two Spot, Old Spot, New Spot
 

I vote t dm-1 now - it does work better when cancer is smaller. I think thats why it worked so well for Lorraine. aggressive tx kept hers contained to liver area. its gone.

Re: One Spot, Two Spot, Old Spot, New Spot
 

SoCal, First, my congrats to you on your journey (who gives congrats for the big CA, right)...but, what I am trying to say is you have been a great example of living with this disease as a chronic condition and that is admirable.... Also, I am on TDM1...kadcyla and while not yet NED I have had good improvement. It is so hard to know which way to turn at times. As one of the first nurses I had back in 2003 said, breast cancer is so unpredictable. Cathy (Ceesun)

Re: One Spot, Two Spot, Old Spot, New Spot
 

just reviewing this thread - onc appointment is tomorrow. skipped my last infusion - markers stayed the same, that is some source of comfort that things are not crazy rampant.

Decided to keep my old anthem grandfathered insurance, despite the $$$$$$. As a reward, they've turned down claims for perjeta which I've been on for months. They are such idiots. Not sure if Genentech will pick up the tab or not.

It is hard enough to navigate through a sea of desperation, and frustration, without the insurance company deciding to play hardball again! Don't know if I have the energy or desire to KICK their asses in return - they are most certainly barking up the wrong patient!!!

Well, thanks again for weighing in on this thread. I wish there was one answer that I want - like take this and you will be cured!

So-so Cal Gal

Re: One Spot, Two Spot, Old Spot, New Spot
 

Hate to hear that the ins people are up to their old tricks and not wanting to pay claims! I suppose you have had your onc try to fight it for you? All that is such an energy sucker, when we need ALL our energy to manage other parts of our lives and keep some good quality therein. Stage IV cancer patients are not supposed to live so long and mess up the actuarial tables ...

Dance off some of that frustration and maybe some insight will appear in a cleared space.

Re: One Spot, Two Spot, Old Spot, New Spot
 

Can you find an advocate/lawyer to help you?

In 1990, when my life-long brain tumor was discovered, the neurologist told me he would only recommend this certain neurosurgeon in town. Problem was, the big hospital he practiced was not part of the HMO plan I was on. So we needed to do a special contract - a concept that I was not aware of at the time.

We couldn't even past the receptionist over the phone ... Fortunately, my then boss had worked at law firms before and knew who to talk to and how to talk to them. She had also found me a pro bono lawyer (Young lawyer of the year in our State) just in case ...

Sending you good vibes.