lung mets, CT scan, and going off chemo
 

Hello, there! Been a long time since I posted. Was diagnosed with lung mets in April and been on taxol, Herceptin, and Perjeta until last week. Got scanned and found that mets had shrunk by 30-50%. Good news! Here's my question:
My onc says I can go off taxol, which I am eager to do (I'll stay on H&P indefinitely.) But she said that they don't really know if it's the taxol or the H&P, or the combo, that has reduced the nodes. So, what's the logic? What if it was the taxol, and I progress on H&P? My sense is that she wouldn't put me back on weekly taxol, which has been pretty easy compared to taxotere every three weeks, but would go to kadcyla.

Is it just me, or does Stage 4 treatment feel loosey-goosey? My sense is that there's no set plan, just trial and error options. They scan me every 3 months to see if there's progression, and we take it from there. I'm also nervous about so much radiation from CT scans.

Have any of you been taken off chemo and been on H&P for prolonged lengths of time? I'd be grateful to benefit from hearing of your experiences.

Thanks so much!

Cheers,

Katherine

Re: lung mets, CT scan, and going off chemo
 

Hi Katherine
I have been in a herceptin and perjeta trial since May 13. 1st 8 cycles with docetaxol, last 32 cycles H & P only. At the moment doing well on it! I find it quite easy to take. It is the perjeta that is the trial drug and if anything changes it is no longer given. This is a worry especially as my health board has not approved Kadcycla (cost basis). Not sure if you can ask for it but it is not automatically considered here. Like yourself I find this odd - is there a plan! Other problem is that I find Oncologist a bit negative & you can't choose who you see here. Don't get me wrong. Onc is nice but you never get "doing really well" only "your fine" etc. Sometimes a little more positivity goes a long way.
Regards Juls

Re: lung mets, CT scan, and going off chemo
 

Stage 4 is VERY loosey-goosey! What I've learned is that there is no rhyme or reason, and that staying on targeted therapy, no chemo, has (more or less) worked for me. You can take a break from the chemo, and always add it back in if your markers jump or your scans look bad. At that time you can decide if you want to try Kadcyla, which makes sense to try. I've spread out my scans, too. Going 4 months instead of 3 is reasonable, unless you have a clear reason to scan at 3. Then you can move it to 5 months or so. I'm stage 4, not ned, for the past 8 years. Not sure my own next plan, I'm a bit overdue for my PET/ct :)

Re: lung mets, CT scan, and going off chemo
 

It's my impression that we're all guinea pigs in a new environment. Because there are now targeted treatments for HER2 bc many of us are living a long time (or at least much longer than before) after a stage iv diagnosis. But what to do and how to keep the magic coming is, indeed, "loosy goosy."

Everyone's body is different; therefore, since cancer is a disorder of a person's own cells, and not a foreign invader, everyone's cancer is different. Eventually, all cancer treatment will be customized to each individual. Right now, we have studies based on grouping cohorts of people that researchers hope are enough alike to make the results meaningful, but that's a bit of a crapshoot.

I've known a number of people who have had very good results with just H&P (and hormone therapy, if the cancer is hormone-positive) with few side effects. You might as well give it a try. You might get a number of years out of that, and if you do get progression maybe there will be another new treatment to try by then.

Stay in the now.

Re: lung mets, CT scan, and going off chemo
 

Hi Katherine,

I've been on Herceptin and Perjeta alone for over 2 years now. Prior to that, I had been maintaining on Herceptin and Femara for many, many years. I was doing so well in fact, we thought maybe I was cured, and tried going off the Herceptin. My liver mets came back big time within a year. We started me back on Herceptin, but things were not improving fast enough, so added Taxotere, and Perjeta. As you can see by my signature, the Taxotere and Herceptin had gotten me to NED once before, so It seemed like the best choice. However, the Taxotere side effects were once again pretty bad, so we stopped, and I've been on just the H&P and Femara ever since.

My tumor markers have been slightly elevated in recent months, but I don't have any symptoms, so we just keep on this path, until something changes.

I asked my doctor a few months ago about going off of the aromatase inhibitor (Femara) that I've been on since 2002, because I don't like how it's ageing me, but she said "I'm afraid to rock the boat". So you see, as Amy said, we really are guinea pigs, at this stage.

I find the Herceptin and Perjeta are quite easy to tolerate, after your body has time to adjust. In the beginning the Perjeta caused diarrhea that was very unpredictable, so I never ventured far from the potty!

I still have to watch what I eat, but all in all, quite do-able.

Re: lung mets, CT scan, and going off chemo
 

Kim--

Thanks for chiming in! You appear to be one of the forerunners of our new club--long-term stable/NED Stage IV.

Love your avatar. I think I need to do some horseback riding when I get back to Colorado.

Perjeta seems to be a huge blessing. Right now I'm planning to get to NED on Abraxane, Perjeta, and Herceptin, and then stay on just H&P as maintenance.

I'm working on a PhD. I started after I was diagnosed. I plan to finish, and graduate. There will definitely be a press release.

Wish me luck!

Re: lung mets, CT scan, and going off chemo
 

My situation is a bit different. I had been in herceptin and perjeta for almost a year although I have never been NED. My problem was skin mets but they didn't progress until just recently it has gone to my lungs on top of my skin. My doctor put me on halaven but stopped my perjeta and herceptin. I'm on halaven only. My Onco said
Since I progressed on h&p, out means they werent working for me. It would only do me harm than good if I stay on them. Although I had thought we her2 would be on some type of target drug forever. Maybe he meant to add them back on once I'm stable. So like others have mentioned, if you progress on h&p hopefully you don't, then chemo will be added back. But you can't be on chemo forever, so you definitely need some break once you are stable!

Re: lung mets, CT scan, and going off chemo
 

Hi Yanyan
Just reading your post about progression and H & P "no longer working". A friend was told the same a few months ago and H/ P was stopped. In the past few weeks Herceptin given again!
I don't know if this is normal procedure (if such a thing!) One minute you are told "no longer working" and drug stopped, the next you can have it again! If not working
for you , why is it prescribed again? Does having a break make a difference?
Juls

Re: lung mets, CT scan, and going off chemo
 

Kim
Just read your post. I have been on Herceptin. Perjeta for 2+ years and Femara for about 20 months. Doing well on them but in last few months found that Femara making me really stiff. When I mentioned possibly changing to another AI, I was told the same "I don't want you rocking the boat". So still on Femara but now taking Vit D and glucosamine! ( Oxford journal article on AI's & Arthralgia recommended Vit D especially if on Femara/Letrazole!)
Juls

Re: lung mets, CT scan, and going off chemo
 

Amy,
I sure like your getting NED plan, and think the Abraxane along with the one, two punch of Herceptin and Perjeta will do the job!

And we are all going to celebrate with you when you get that PhD!

Kim

Re: lung mets, CT scan, and going off chemo
 

Hi Juls,

I too have been dealing with the arthralgia for a long, long time, and find that along with lots of Vitamin D. exercise, exercise, exercise, is what helps me!

When I slow down, it's too hard to get going again...LOL!

Kim

Re: lung mets, CT scan, and going off chemo
 

Hi Kim
I know that feeling well! Somedays I am like a 90 yr old getting out a chair!! Have just started taking Vit. D so hopefully it will help.
Juls

Re: lung mets, CT scan, and going off chemo
 

I just want to thank all of you ladies who are cancer survivors for many years and still come on this site to help and give advice. I am fairly new here, diagnosed 2/2014 and hope in a few years I will still be checking this site and reaching out to others in need. You are all amazing!!

Re: lung mets, CT scan, and going off chemo
 

Kim in CA- I live in FR so the protocols are different but I always thought that Taxotere.H & P are only given 1st line. How did you get it after Xeloda?
Also, with being NED, what does it mean with CA15-3 markers elevated still? Have you been given a PET scan to confirm?
I am on Kadcyla now and my markers have been a bit of a yo-yo.

Re: lung mets, CT scan, and going off chemo
 

Hi reets

Warning, this is a long post!

You are correct, the protocol for Taxotere, H & P is for 1st line treatment.

In my post above, I actually mis-stated the sequence of events when I recurred (chemo brain I guess) Anyway, my Doc put me back on the Herceptin first, when that wasn't working fast enough, we added in the Taxotere, and when I could no longer tolerate the Taxotere, we switched to Perjeta. My Insurance (Blue Shield) denied the Perjeta because I have been heavily treated before, so I was able to get it through Genentech's patient access program. I had only been on the Perjeta and Herceptin a short time, when my husband and I decided to switch health plans. I interviewed a doctor at Kaiser Permanente, before we made the switch, and she said I would have no problem getting the Perjeta through them, if that was what was working for me.
So we made the switch to Kaiser, and I have been on the Herceptin & Perjeta ever since.

Regarding tumor markers. I know from my own past experience that PET scans don't show anything when my tumor markers are only slightly elevated. It is not until they start approaching the 100's range that anything will show up. Because I have had so many scans during the course of my disease, I have made the decision not to do any more scans then absolutely necessary. My markers have always been a reliable indicator for me, so my doctor has agreed that we will watch them and look for a steady upward trend before doing more scans. Right now they keep fluctuating from the mid to high 40's. Another interesting thing is that at my old oncology center, the reference range for normal CA15-3 was 0 to 31. At Kaiser their reference range is 0 to 39.

Before this last recurrence my markers stayed consistently in the 20's. Since I have been at Kaiser, the lowest my markers have ever been is 37. My doctor at my old oncology center also used the Her2 Serum test to monitor things, but Kaiser does not use that test. I'm thinking that if my markers do start to climb steadily upward, I may go to an outside lab to get the Her2 Serum test run. In my case, it was actually more sensitive than the CA15-3, and was the first to rise when I had my recurrence.

So there you have it, no easy answers here, as we are all so different.

Re: lung mets, CT scan, and going off chemo
 

Thanks so much for the very informative response. Yes we are all different but it can be comforting to compare stats and have numbers that establish a benchmark to make treatment decisions under different protocols.
Good to know that the normal ranges for CA15-3 can vary so much. In FR, it is <25 I went down to 22 and it's inched up to 27 over the last three sessions (9 weeks). Perhaps that's why my Onc did not seem worried.
I will ask next time about the HER2 serum test if it may be more accurate; not sure if I have taken this.
I will also look into the Genetech patient access program to see if Perjeta is available internationally. They also produce Kadcyla in the US and I believe, is owned by Roche Pharmaceuticals. Perjeta is used here with Herciptin but ONLY 1st line. The combo seems more effective so I want to know future options & if this access program can help.
Continued NED for you!!