Perjeta/Herceptin/Taxotere

Lori, the perjeta combo didn't work for me, but I still follow this thread. I do still work--pretty much full-time. I have a desk job, so it isn't physically demanding, although I am exhausted and feel the weight of gravity and the day after a full day. I don't think you're crazy to work, but it's an individual decision. I think the fact that you're considering it is worth listening to. Do you like your work? Do you need to work? Is it flexible? I'm almost 20 years from a "normal" retirement age and do like my job. I use FMLA time as I need it. Right now it averages about a half day a week but some weeks more. I don't want to give up the money, benefits, life insurance, professional and intellectual engagement. If I were wealthy, I'd stop working and enjoy more of my life. But if I stopped working completely, we would take too big of a hit financially that I think it would be too stressful. I feel I will know when I need to cut back or go on leave again. Interestingly, because of the disease, I have a much more healthy approach to work and so the types of ridiculous workplace shenanigans/politics/stupidity that several years ago would frequently make me so miserable that I'd want to resign on the spot no longer faze me. Or I'm able to shake it off fast and not get out of sorts. I'm able to maintain perspective better, not get sucked into the dramas that others stir up, and not worry so much. Or maybe it's the meds I'm on that are helping with that.

But a big factor is how the SEs are and what kind of mets one has. If you have bad SEs that mess with various systems--digestive, neuro, whatever--that might dictate whether working is worth it. I am dealing with fatigue that limits my social life. But I've always been a homebody and so don't mind saying no to a lot of parties or outings that would strain a healthy introvet on a good day.   

If I hated my job, I'd probably go on disability. But I have good bosses and good benefits right now so it's going OK. I don't want to die at my desk or work too long and not have quality time when I most need it. So I'm just taking it cycle by cycle and scan by scan.

Spamgirl, I'm on low dose taxol, same family as taxotere. I get it 3 weeks on and 2 weeks off instead of one big dose every 3 weeks. So far so good. No bad SE's. Onc had talked about every week but decided to try this protocol first. Thankful you are stable. Hooray!! About working .... I loved my job but was just having to miss too much because of chemo and went on disability. No regrets there. I was a teacher and with this flu season I'd be a fool to gap be around kids all day!

RonnieKay, there are threads here where we gripe about the things people say to us and how to respond. Most of them are over the top offputting (what people say to us, that is), but it's a fun place to visit. I think the thread is "Sh*t People Say to Stage IV BC Patients"). 

I have been pretty private about my dx and only a close circle of friends knows its stage IV. Those who continually ask "how ARE you?" and treat me with kid gloves no longer do. I've explained as best I can that I'm still me and that BC is 1 millionth of who I am and that I just can't be yanked back to the topic all the time. Others, like at work, ask that too. "How are you feeling?" "Pretty good." "But are you tired." "It's OK." "Treatments are OK." On and on. They mean well, but I'm working up telling some that the questions are easy but the answers are too comlicated to discuss at work, and I end up either saying more than I want to or betraying myseld and the truth by making light of it, so I just want to keep it out of the workplace. This would have to be delivered gently and courteously, but I may have to with a couple people. Meantime, I often say, "God enough" or "feeling good" and then change the subject.

As for leave, I did go on leave initially but kept a toe in my work--working from home (10 to 20 hours/week sometimes) and almost daily contact with an underling. I did it because we had a new CEO who didn't know me or my work ethic; layoffs were hanging over us; I was insecure about employment; I had a history of overwork (or getting in the zone and working hours past normal). In hindsight, I regret that I hadn't taken a true leave and severed most contact with work for 6 months. I don't think I did enough to focus on myself and to mentally assess what was best for me. So if you can take a break, go for it. Trust your gut though. I was conflicted and listened to my head not my heart too much. 

I was on Herceptin-Navelbine-Tykerb 18 months and it got me NED. My onc isn't sure if the Navelbine was to credit though. When it stopped working, I went on Tykerb-Xeloda and took a break from Herceptin. I think the T-X worked for 5 or 6 months, but the long Tykerb use and then adding in Xeloda wreaked havoc on my big toes. That's a story for another day.

Lori and RonnieK, I have been stage 1V since 2001 and have always worked full time.  I will admit that the past three years have been more difficult since I've had issues with the big D due to various drugs that I have been on.  Other than that, I feel good.  Currently on perjeta/herceptin/aromisin/afinitor/tykerb.  The big D is a big issue, but I've managed to hold it together and keep working full time.  I also have to travel as part of my job.  That's been the most challenging part, but I've cut back on the travel as much as I can.  Lucky for me that the company has also cut back on travel, so I'm not doing what I did several years ago.  I think each of us has to make our own choice based on how we can manage the treatment process and balance it with our job.  For me, I feel so much better emotionally and much more positive working.  I enjoy the interaction with my collegues and clients and as strange as it sounds, the work seems to give me more energy.  I always felt that when the time comes that I can't work, I would know that and then make the decision to let go.  Of course the paycheck is a definite plus.  There is no right and wrong as to whether you should or shouldn't work.  You need to decide what works best with your situation.  The people I work with know that I have some health issues, but only one person knows all the details.  There has never been a need for me to say more. I've been able to arrange my treatments for late in the day every three weeks, so it's never an issue.  I also have the option to work from home two days a week if I feel that I need to, but very rarely do I.  Hang in there and follow your own heart and instincts.  Listen to your body as you will know what is right for you.  Of course it definitely helps to have a job that you enjoy.  Although my job is stressful, I do enjoy it and still feel challenged. I think having a job that creates negative energy is definitely not good for us or the cancer. 

Lilylady, I start this combo Monday. I am a little apprehensive. I have a pretty demanding job and I remember how exhausted I was the last time I had Taxotere. I did take 4 days off, though. I feel like I have to keep working, no matter what. Otherwise, I lose my insurance and, not to mention, half our household income. I would love to compare notes.

Thank you all for your input. I have an awsome boss, at a family owned restaurant. He worked with me through my first bout 5 years ago, and "my customers" as I like to call them, tell me the place just isn't the same since I've been gone. Things like this surely make a person feel wanted and needed. Sometimes I think that's what makes me tick.

 I had to do the disability route this time so i've been off since (mid) March. Like many, I work from paycheck to paycheck so it's been quite a loss for me. My DP has kept me afloat on his income thank goodness. My scans are stable right now so I think it's best for me to go back to work while I feel I can, even if it's only part time. That good ol' boss is willing to work with what ever I want.

SSDI says I can try their "trial to work" program and it won't have any impact on my disability money but, for now my ins. is through medicaid. I have an appointment with them to see how much they will allow me to earn without cutting my medical. They tried to tell me to go ahead and go back to work and we'll make a determination at that point. I'm thinking NOT!!!

DUGH!!! I'm not stupid, I need that medical to keep me alive!  SSDI says that medicare will pick up my medical after 24 months. At that point I'll have to work in order to pay the premium for my OBAMACARE to cover what medicare doesn't.

Such a rat race. I tell my kids to be sure to get a job that will offer ins. or purchase some while your young and can afford it. And surely before any little illness steps in. 

Hello everyone,

Its been awhile since I've written in. Having some scanxity I have an MRI tomorrow for what my M.O. is thinking is a pinched nerve causing a head ache and two fingers on my right hand to go numb. I also have my six month scans next week bone and ct. Hate waiting to get scans and results even though my M.O. has his nurse call me as soon as he's got the results back. I'm just frustrated right now. I've had to up the pain meds to keep up with my kids. I'm hoping at some point we can get back to some type of normal. Anybody else getting night sweats. I'm on femera since Tami and I did not get along. I think femera is worse, but I got a huge rash from Tami. Oh well. Thanks for the rant. I really needed a moment. Now I can breath again. Night all!

Fujiimama, good luck on all of your scans. Ugh...scanxiety. I have a ct today. Was ned after last one in november and praying I still am. Barb, I did lose mine on the tax though it started growing back after the 4th round.

Bhd, yep hair loss because of the taxotere.  Sucks but hopefully we all get good results and can move on to just maintenance with perjeta/herceptin and get our hair back. Mine came out really quickly because of the taxotere loading dose and was a mess as it had gotten long and thick after almost 2 years of hair growth. So my sis shaved it.  It's this weird white pubic hair mess now (sorry don't mean to offend anyone).  I got delayed 6 days on treatment because of insurance and I swear it grew out some.  I look like an old man. lol. I alternate between a very expensive real hair wig (my stage 4 cancer splurge) and just ball caps with a do rag (much more comfortable). But I like to wear my wig when I don't want people to take notice.  

Scanxiety kicking in for me too. My markers were down just slightly after first treatment and I have my first CT scan at MDA on Thursday. I'm hoping that since I see my MDA oncologist on Friday they will already have the results back.  Anyone with experience out at MDA as to whether it will move that fast? I've been out there before and gottten my results the same week but this is quick trip and will only have one day between appts.

They seem to move very quickly and efficiently so that is good. I see Dr. Ibrahim.

I just started this Monday, after long term stability of lung mets on Herceptin ended and everything is lighting up again. New spots in lungs, liver and body cavity. Hoping this works as well as the studies suggest.

Redmond, herceptin and AC can be hard on the heart so they don't generally give at same time. I think some women do 4 to 6 rounds of AC and then switch to Taxol with Herceptin. The standard of care or most common combo for early stage HER 2 gals is Taxotere, carboplatin and herceptin. Perjeta is new and is only approved as a first line treatment for metastatic breast cancer. I would push for the perjeta or a second opinion. Good luck and keep us posted!



Tera

Redmond...wish you didn't have to join up...but glad you've found support!  If you're wondering about Herceptin's side effects, I can speak for myself and a few friends (and people on the boards), that tolerated it very well.  Some have a bit of fatigue, but almost every treatment leads to that.  With my first diagnosis in 09, I had taxotere, carb & herc & after the tax & carb were finished, I still had 8 months of just herceptin...without any se.  It can be hard on the heart, I was lucky it didn't affect mine, but bondgirl gave you info on that. 

Redhead...hope yesterday's treatment was good to you.  Will be praying you feel good & strong.

Lily...got PERJETA approved!!!  The letter came yesterday and treatment is today so they'll add that.  I'm happy to hear it's easily tolerated.  If you had progression after 9 weeks on just H/P...does that mean you'll be on Tax as long as it keeps working?  I remember them asking me about neuropathy when I was on it just for the 12 week regimen...do you have that...and is it weekly like Ms Spam?

Lorijo...Will certainly be hoping for long term stability in your new treatment!!!!   Every time I pull up this thread, your picture makes me smile