Pondering Possible Second Line of Treatment

[AvidBooklover]

I was diagnosed with breast cancer in October 2012; had lumpectomy and breast reduction in November 2012.

April 2019 was diagnosed with mets to bones in hip area. Three targeted rounds of rads and a protocol of Ibrance (100mg after 125mg caused mouth sores) and Faslodex shots monthly and Xgeva every three months. NED since summer of 2019.

I ended up with dropped foot, most likely as a by-product of radiation. Walking with a brace.

Last weekend while walking on our patio, I slipped and fell and bruised some back muscles badly. I already had a follow up wit the physiatrist scheduled for the Tuesday so saw her and she felt there were no broken bones. BUT we did an Xray on Wed just in case. Next PET was not scheduled til Jan.

There seems to be a new met in the hip area showing on the Xray. So we moved the PET up til this Friday. (Now thinking...lucky I fell???) I already was seeing the doctor next Monday, so that is on the calendar.

I definitely have markers for a next treatment, but I have been so happy on Ibrance. Dreading a possible medication change. I am not sure what direction we would go from here.

I think what is making me crazy is that for a long time I knew I had IT, but IT was not the focus of my life. Sure I was taking pills. Sure I was getting shots. But it all was known. Now going into the unknown....dread and drat.

Betting MANY of you know how I feel! Thanks for letting me vent.

[Tolife_18]

Certainly can relate to how you feel. My PET is this Friday and I already start asking questions what if.

I feel that we should be active participants in the when and what decisions are taking place. This is particularly important when 2nd line of therapy is on the plate.

I was diagnosed in July 2020. In September 2021 the MRI showed compression of the spinal cord by the Mets in the thoracic area. I developed dropped foot and when the symptoms progressed had a spinal surgery.

My oncologist felt that despite stable PET, the systemic therapy should be changed. I didn’t agree finding the argument not sufficient. The next PETs that we’re done every 3mo were stable as well. Hoping for good results from the upcong PET.

Of course, it’s up to you and your oncologist to make a decision. But if it’s only the bone Mets of unknown activity, you may continue on your current regiment.

Wishing you all the best in your journey.

[AvidBooklover in reply to Tolife_18]

Ha! Someone else with a PET scheduled for Fri wondering "what if!" Just so stressful! I have some terrific things going on in my life, but the drumbeat in my head that overtakes them is the great unknown!

And what a loud drumbeat it is. When will the next shoe drop?

Hoping that we both get good news...or something we can wrap our heads around easily.

Thank you for sharing your thoughts!

xo

[Tolife_18 in reply to AvidBooklover]

basking ridge at 12:30. Will we meet?

[AvidBooklover in reply to Tolife_18]

Bummer as the only appt I could get at last minute was Bergen at 11; arrival time 10:30. That would have been fun. Seeing Gorsky Mon at 10:40. I am tired of waiting for labs to get done on Mon AM when I have appts, so I had them schedule my blood work for 5:45 on Fri in Basking Ridge. I am all about efficiency. Wishing you all the best...

xo

[Tolife_18 in reply to AvidBooklover]

And you! All the best!

[Andersl in reply to Tolife_18]

i totally agree that we should be active participants in any decisions about treatment.

[AvidBooklover in reply to Andersl]

I agree! I am one tough patient. And I think that is noted on my chart at MSK as "will ask a ton of questions and will do her own research."

[Pbsoup]

I so relate to what you wrote about IT not being the focus of life. I was diagnosed in July of 2019, and am now on my 2nd line--Xeloda, and life is still normal. I work, travel, ride my horse, see friends etc. I feel fine other than some hand and foot issue. Most ppl don't know about my diagnosis, so that allows me space to not have cancer define me. I am, dare I say it, happy... and that makes me terrified about what's next. I really don't want IV chemo. I really, really don't want to feel and look like shit and curtail my "normal" life. I cope by trying not to think about IT--sublimation and denial is my motto...but that nagging sword of Damocles is always there.

Anyway, this is getting a bit morose. Sorry. I feel great so don't think I'm going anywhere soon... although I have scans in three weeks.

That said--for you...It sounds like you're doing fairly well too, so this might just need a treatment "adjustment" not a total change. For example changing Faslodex to a different hormone blocker. I did that at one point... Especially if its still just in your bones (my shift to Xeloda happened when it snuck out into my liver...). Even if you do change medications, hopefully it will be pretty straightforward and IT will stay where it belongs--on the periphery-- for a long time to come.

xP

[AvidBooklover in reply to Pbsoup]

Thank you for the feedback. You so summed up how I feel. So few know about my diagnosis. Especially with work from home, easy to cover up anything going on!

I rarely dwell on the future, but yowser the fall, the xray and now anticipating the scan.

Plus turning 65 and realizing that I need to stay on private ins (I own my own company) as many drugs are not covered by Medicare, has been an eye opener. I love what I do, but seeing the cost of insurance. Insane.

I am just glad we were able to move on getting a scan so quickly! And an appt with the doctor. Must look on the bright side.

xo

[Bettybuckets in reply to AvidBooklover]

hello dear, in June I received the Medicare card effective back to jan 1st w 2022. This was a surprise because I am 62… but now with MBC for 2 years we are all eligible. Anyway it hasn’t been the blessing I had hoped because Medicare doesn’t help with meds… and all the medi Gap drug programs only cover a portion of drugs and my Verzenio is So costly thst even paying 20% would break us. So surprise… we have Medicare but had to keep our hi cost premiums with deductible and co-insurance with Medicare JUST so the Verzenio gets paid for! Anyone else keep their costly private insurance and Medicare?

[AvidBooklover in reply to Bettybuckets]

I only have Part A. Still on private insurance. Thanks for echoing what I see as crazy. Imagine going on Medicare and then being diagnosed with MBC after 65 and surprise, here come insane drug costs.

[Bettybuckets in reply to AvidBooklover]

I love the new proposal that drug costs will be capped at $2000 per person! Let’s hope thst gets passed. It would be a game changer for all.

[AvidBooklover in reply to Bettybuckets]

I looked at that and thought it applied to only certain drugs. Woohoo if it applies to these "boutique drugs" as well.

[Bettybuckets in reply to AvidBooklover]

that would be so helpful for all of us gals!

[stardust1965]

I know any change with our MBC messes with our heads. I’m sorry for your fall and that your equilibrium is out of kilter. It’s a normal reaction.

When you get your scan results and you know the extent of any progression then you can discuss the way forward with your oncologist. Given your success on your current treatments I would be reluctant to make a change at this point. Another scan a few months later might give you a better idea of things. Here in the U.K. once you move on from a treatment you can’t go back to it. You will have plenty of good next line options but I wouldn’t be in a rush to change. But I am saying this after zipping trough most of my options over the past twelve months.

I always find it really useful to see the scan results. It’s then much easier to make the decision to stay on treatment or move in to the next depending on what you see.

I know how you feel but you will get back to that happy place and things will settle again. Aim for that.

[AvidBooklover in reply to stardust1965]

Thank you for sharing your wisdom! I remember you talking me off the ledge when I was stressing a scar from thyroid surgery, too. My imagination can really get out of control.

It has been a rough year outside of cancer. My MIL fell about this time last year and she was in and out of hospitals and rehab until she passed away in May.

Then my mom fell in July and she passed away about four weeks later. She had been suffering from dementia and lost the ability to swallow.

Now super worried about my dad who is on his own. He still plays golf, drives etc at 93, but he is so lonely.

I told my husband I need to spark some joy...and it will be with a hot tub. Seriously. We shopped for one yesterday after my wanting one for years. We just closed the pool here. Chillaxing in the hot tub is what I think I need right now!

xo

[Bettybuckets in reply to AvidBooklover]

a hot Rob would be so joyful! Every night as it gets cooler! Love them!

[stardust1965 in reply to AvidBooklover]

Gosh, you really have had a lot going on. I’m really sorry for the loss of your loved ones, and so recently. A relaxing hot tub might be the perfect antidote for all the stress.

I think changing from the first line to second line of treatment is the hardest. Each treatment change after that seems easier somehow. Perhaps it is the race to find a treatment that works.

When do you next see your oncologist? Let us know what is suggested regarding treatments.

Enjoy that spa! And I like Beth’s suggestion (below) of a “hot Rob” 🤣

[AvidBooklover in reply to stardust1965]

Yep, I think you are right about the stress of a possible change from the first to the second. The PET results from yesterday already were on my portal from yesterday's test, but I am not looking! I had to travel to a different MSK hospital that had avail for a PET, but am grateful we scheduled it so quickly to meet my regular Dr appt. Good karma on that!

I already did my lab work for Mon...may look at that this weekend. I did it yesterday at the local MSK since the lab on Mon AM takes forever. I live close enough that round trip with the blood work was 30 mins.

Been on first line treatment for 3.5 years, which definitely has been great. So let's see where fate takes me now.

And yep on the hot tub, or "hot rob."

Oh, and on my dad. He has tried to handle all paperwork on his own. He kept telling me he was going to the accountant, which is next to the lawyer. He needed to see the lawyer abt a few things, not the accountant, and it was making me nuts. So yesterday, I called the lawyer's office and yep, he HAD been to see the woman there who I told him to meet with!!! Not the accountant. She now knows my concerns on what needs to be done.

I have been like a detective on this. I know now to check her on my questions on what has been done!

Oh and a few weeks ago he told me he thought my mom was buried in the wrong place! I kid you not. He thought she was on level one in the mausoleum, not the third slot where she is. I found paperwork that indeed she is in the right place. So that episode of the "drama sitcom" that is my life is under control!

If stress causes cancer...

"Hot Robs" for me are needed!

xo

[stardust1965 in reply to AvidBooklover]

Good karma indeed! Good luck for your appointment today. 🤞

[AvidBooklover in reply to stardust1965]

THANK YOU! Well the good vibes worked. I peeked at the PET results last night and they showed no new cancer. The spot where they thought there was a met was not one on the PET, and today the oncologist felt the PET was very clear that there is nothing to worry about. HUGE weight off of me. Staying with Ibrance and the Faslodex shots and Xgeva every three months. And they did a flu shot today, too.

From all this I learned that walking with the higher profile brace is definitely better. I clearly see that I would NOT have fallen with the higher brace on. It took a FALL to figure that out. I need the stabilization on the back of my leg and ankle. It's white and looks very orthopedic while the other ones looks like I have a cool sports injury. I need to get the white one made in black (which is what I originally wanted) so it blends in more. Silly thing, but it matters.

THANKS for the support...means a lot. The feedback on this board definitely calmed me down. Unless you are in the MBC game you have no idea how rough this is!

xo

[stardust1965 in reply to AvidBooklover]

That’s great news! If it wasn’t for that pesky brace I’m sure you’d be doing the happy dance! 💃

[AvidBooklover in reply to stardust1965]

You are sooooooo right! My husband thinks I should get the guys at the local auto body shop to wrap my white brace in black like they do with cars. Seriously!!

[Hazelgreen]

Wow! You have had a tough past year! I think the hot tub is an excellent idea. Best of wishes on the scan results, and your being able to continue your current treatment plan.

XXX,

Cindy

[AvidBooklover in reply to Hazelgreen]

Thank you. Water always calms me, and I feel like I can do leg exercises in water to help my leg and foot.

[Andersl]

One of the hardest things ive found on my journey is the unknown.

My advice would be to stay calm because stressing about whats next wont change the outcome.

Another thing you could do is keep ahead of the game by asking your consultant 'what if' scenarios. Then you have time t get used to the idea and do some research.

All the best x

[AvidBooklover in reply to Andersl]

Thank you! I have only seen this oncologist twice; I have had many changes to them over the years. Amusingly if I had picked her in 2012, she would have been a steady doctor. Instead I think I had six. She said life would have been more boring with just her! Very funny.

I had asked this one where it might come back and she said most likely in a bone, as had others. But she said we would talk next steps once something happens instead of getting ahead of ourselves. She said new treatments are happening all the time.

Bringing my husband on Mon to listen with me. Thanks for your calming words.

xo

[NPmary]

So sorry you are facing all of this!

Safe to vent here

[AvidBooklover in reply to NPmary]

Thank you...yep, I knew where to turn to vent!! Great group here. xo

[mariootsi]

We totally understand the fear!

[AvidBooklover in reply to mariootsi]

Yep I picture all of you holding your breath at times like this too! xo

[Granny333]

yes, I had a suspicion last year but mammogram showed normal. I blame myself for putting off having more tests. So I take one day at a time

[AvidBooklover in reply to Granny333]

Amen to that. We are investigating what showed on an Xray after I fell as "a possible small met." Verdict due Monday!