Perjeta/Herceptin/Taxotere

Thanks to each of you for sharing your stories - I am reading closely every day, as I am not on perjeta yet but oncologists sees it in my future.  You ladies are breaking thru for all of us who could benefit from this drug.  Be strong, good luck and best to each of you - SUE

Thank you Lilylady for pointing me to this thread. 

Hello ladies, I too am hoping to get an ok for this new drug. Hate the fact that someone else has the control!!!

Edited

I agree with you Jodi. If you're the queen of denial than I'm the princess. But it works for me. Why give this stuff any bigger place in your life than you have to? Hope you do well with the perjeta combo.



How are you doing, Formygirls? I see you posted then deleted. I know you haven't been feeling too well lately and was wondering.

I am having my second Perjeta infusion tomorrow and have a question for those who have posted that they sometimes return to the hospital for fluids. I've never done this and wonder if this is something you've always done inbetween infusions, or if the onc or nurses insist on that step with the Perjeta, or if some people are more prone to hydration. I know I don't usually hydrate enough, but I'm trying to more with this regimen. And I'm getting the juicer going again. I wonder if I should ask about getting a bag or two of saline in between infusions, if that would help with the SEs. 

Any insight from those who get fluids on non-chemo days would be appreciated.

I hope all are doing well today! 

The clinical trial was once every three weeks, and that is schedule I believe all of us who have been approved for Perjeta are also on. I think if it were weekly in the dose they gave it to me I would much rather go lie on train tracks. That first week was a bitch, and you'd need to strap me to a herd of horses to drag me back there a week later. ...I exaggerate of course. Part of what was so difficult for me was feeling so alone in dealing with the side effects. I didn't feel well prepared (in part because I told the onc nurse I'd find all the material I needed online), but when I e-mailed the clinic a week later and listed my SEs to see if there were any of concern, they just said hydrate more and take more pain meds. I was an emotional wreck because I'd never experienced some of these SEs--the muscle and joint pain, dizziness, and vision changes especially. I told my husband to keep an eye on me because one day I wasn't sure if I was walking on the floors or the walls or had my clothes on inside out or what. I also had excruciating muscle cramps where out of the blue my calf or ankle would seize up and turn to stone. It was so painful I had to scream out. It would happen only when lying down or sleeping and I'd have to walk it off but could hardly move because the muscles were locked. That happened a half-dozen times. I'd had some of that before--when on Herceptin/Navelbine/Tykerb. The doc looked at whatever numbers might indicate a deficit of some sort but found nothing out of whack. I don't know why it happened or stopped. And the constipation was indescribable. Like trying to poop out a saguaro cactus? Am I scaring the heck out of some of you? Don't worry; I suppose it's like childbirth where I remember having pain but can't exactly conjure it now. I think it will go better this next round.

When I get infusions, they alwasy give me a bag of saline, but I've never gone back on another day for another bag. I just fill up a pitcher of water at home or work and try to drink 64 to 128 ounces or more every day. I'm behind schedule with it right now so should go fill up. 

Surly - OMG, the Saguaro cactus statement was priceless. And brought tears just thinking about it!

Sorry, formygirls, that youre still suffering so much. But even marginally better is still better and somewhat hopeful. It seems whatever treatment I've been on the beginning was always the worse and eventually the SEs got better. Hope that's the case with this combo thatt you're doing. Feel free to post even negative stuff. It is what it is and being very sick can just make you plain mad and maybe stating it will somehow make you feel better. Hope you actually do get to feel a lot better real soon.

So I guess many of us our on the same page, lily lady....do what you gotta do but then try to live your regular life as normally as possible. I also have been lucky enough not to have many intolerable side effects...so I watch this thread with interest since this treatment may be in my future...both curious and sympathetic for all you brave sisters who are there toughing it out right now. I have never obsesses over scans except this last one and thats only because I was so not ready for hair loss again....nor for incredible nausea! Got another three month reprieve. And I'm glad.

My wee nap turned into a three hour crash, and I missed the women's 4x100. Waah.

Lilylady, do you know the mg of your taxotere? I know it's based on weight or body surface area. Not sure how they figured the latter, since they've never immersed me in a pool to see my displacement. But I'm about 5'8" (I was 5'9" before bone mets but have and a fractured, compressed disk that I think happened when I portaged a f'n canoe against my better judgement six months before I learned I was Stage IV). Anyway, I weight about 137, though I bounce up or down a pounds every month or two. I'll probably go up again because of the steroids. Curiously, my taste has changed a little on this regimen, but my tastebuds are not shot. I'm more sensitive to spicy and salty foods, but flavors are still OK. A few things are disappointingly metallic. I hope that doesn't get wors.

...Welcome ejs1965. Despite my Stage IV diagnosis from the get-go, I have been willfully ignorant about a lot things breast cancerish because for a long time I could not immerse myself in that world. I didn't want to it become my ID, and I felt like visiting online forums or reading blogs by metastatic patients was like visiting Dante's ninth circle of hell. I felt like I was surrounded by howling voices of the suffering and no one was there to hear them except others in that ninth circle of hell. I didn't want to lose my footing in the world of the "living." That's all to say that I am not well-versed in chemo regimens like many on these forums. I am learning more and have overcome my resistance to joining in and figuring out how to stay grounded in life while also finding those I can help and who can help me navigate this other reality. ...Sorry for that long intro. I just wanted to say that while I don't have a well-educated answer, I will say that I think that the use of Perjeta, as I understand it, is that in the trial it was an antibody that, when paired with another antibody, Herceptin, the two acted as keys to open cancer cells more effectively to let the taxotere in to attack the cancer. That is probably the simplest and the most complex I will be able to get. So, I don't know how Perjeta works, or what the thinking is in using it, without a chemo drug too. I know its common for oncs to try various combos at their disposal, but you might want to explore that more. My onc today said we could consider reducing the taxotere dose slightly but that he was reluctant to do that, and I agreed. My onc is very into research and confers with oncs at the Mayo and our local university, as well as other leading national breast cancer researchers on treatment courses when I come to a fork in the road. You might want to ask your onc how he or she is deciding the make-up of your regimen. I'm finding that patients (myself excluded) often know more than their health care team, because of forums like this and the fact that people have to be their own advocates, so I would continue looking online for answers and then go to your appointments with printouts of what you're finding. When I was having big toe problems because of Tykerb (I had been on it longer than any patient my onc had had before), I did a lot of internet research and found a lot of anecdotes from other women in the same position and how they dealt with it that my onc had never heard of, nor had the nurses.

Today the onc nurse said that the list of SEs for Perjeta is the same as for taxotere because they have only been used in combination together and so they don't necessarily know for sure if Perjeta alone would cause the aches, dizziness, etc. I do suspect that it's the taxotere that is the bitch. When I first had Herceptin in my very first chemo infusion, I had a terrible reaction, with immediate 104 fever spikes, violent shaking, vomiting so hard my bones hurt. It lasted just a few minutes and they were able to slow down the infusion and finish it off, and it never happened again. But I was bracing for similar reaction to Perjeta, but it went fine. A few days later is when the taxotere became a tiger.

I'd be interested in hearing more about your journey away from work and onto STD, LTD, SSD. Right now I'm still working full time, but I know I have to start considering leave again, and maybe permanent leave. But my husband and I get our benefits from my work. My husband is self-employed and his business is up and down, unpredictable. I'm concerned that I won't qualify for new chemo drugs if I have to go on a new insurance and that I'll lose my onc. I have a life insurance policy through work that I don't want to lose. I'm only 47--OK, my nieces and nephews think that's OLD--but I still feel like I just got out of college. It's hard to think about not working and losing all my professional contacts. This is a topic on other forums, but it's been on my mind a lot given my latest disease progression. So if you ever feel like saying more about it--here or in a PM--I'd be interested in hearing more about that decision for you. 

Oh, and tell more about the tree oil. Where do you get this? A co-op or salon or nutrition store? Is it goop in a pot you put on your hands and nails at night and wear gloves or socks? I've got some nail issues and ongoing cracked feet from Xeloda and need to keep trying new "snake oils." Please spill. 

Sorry to blather on, but one more thing. I am feeling some neuropathy. I had it with HCT and it took a year, I suppose, to get the feeling back in my hands and fingers. It affected just the last two fingers and half my palms. My typing was a mess and I dropped a lot of plates and bowls--and papers and pens or anything else I was carrying. But I got used to it.

Have a good weekend. Drink drink drink. Pretend it's gin and tonic. 

I took B6 when the skin around and under my big toe nails became sort of ulcerated. I couldn't wear shoes and had to have my toe nails half sliced off. One fell off and is slowly healing. The other is kind of half off and deciding what it's going to do. Someone online swore by B6 for the Tykerb/Xeloda side effects, and the doc said it wouldn't be a problem. The PA said the B6 was more useful for mouth sores. I've not hear of acetyl carnitine. Is it found at drug stores or nutrition supplement places? Something I should OK with the onc first? I never had pain with my neuropathy, just tingling and numbness. I suppose there was some temp extreme sensitivity but was manageable. Yeah, the onc said the crashing was due to the steroids too, and we did cut back so maybe that will be smoother this time. Still, I'm bracing for it but am much more emotionally balanced than after #1.