Perjeta/Herceptin/Taxotere

How is everyone doing? My fatigue has not let up at all. I go for my next tx on Wednesday so does not look like there will be any good days on this tx.

Forgot to add that I cut off my hair today as it was beginning to fall and bother me. Hats off to you for working through this. I am only walking to the restroom. If you end up on NAvelbine, I found that much easier than this tx although when I was going through Navelbine, it felt awful.

i am sorry this tx is so horrible.  you are in my prayers

Taxotere is a nasty drug. Sorry you are having a rough time. Why could we not just do the Perjeta and Herceptin, I bet the side effects would be less.

I don't get the first time out rule either, maybe to get it faster to market?

I saw my onc today and she gave me a drug called Adderall, it is supposed to be in the same family as Ritalin for fatigue. I am really hoping this helps as that is my main complaint. She ordered a PET in three weeks. I will have a tx on Wednesday and then the PET three weeks later. Because of all the SE, she does not want to wait too long before a scan. She was concerned that I have already lost sensation in both my hands. I am ok with that. I can live with no sensations as long as I can live!!



Lily lady,

I am glad to see you are feeling better and you will get at least 3 doses. Give your onc a hug from me. It really makes me happy to read about doctors like this. Interesting that fluids are helping---were you dehydrated? Maybe I should ask for fluids?hope you continue to improve.

I hope this treatment kicks butt! can't wait to hear about your awesome results.

deenah: you wrote that you were starting perjeta as well - I hope things are going well for you.   SUE 

Hi. I understand this is a small club. I was nudged here by lilylady after posting a question on another forum about whether anyone else was starting Perjeta/Pertuzamab. I had my first infusion of H+P+T on 7/20, and will have it every three weeks. Is that the frequency others are getting it? I had no idea approval was so hard to get. When my onc told me it was approved, he almost ordered it without even asking me but then waited for my appointment. Apparently it wasn't a problem with my situation.

I've had several chemo drugs, starting in April 2010. I was stage IV from diagnosis, with liver and bone mets. I started with carboplatin/taxotere/herceptin for about 10 weeks with no success. Then he put me on herceptin + Tykerb but added in Navelbine. That worked. Who knows if the Navelbine helped (he thinks it was the Tykerb and Herceptin), but we were desperate to get a handle on it and so I was on that from about 7/1/10 through 1/20/12. I was in full remission until 6 months ago. We stopped the Herceptin and did just Tykerb + Xeloda, which worked immediately. Starting in fall of 2011, the Tykerb began giving me excruciating toenail problems. I lost one big toenail, which is finally growing back. The Xeloda exacerbated the nail issue and other hand and foot problems. An early July 2012 scan showed liver tumor growth, so we stopped those oral drugs and just started Perjeta with Herceptin and Taxotere.

I'm working full time and had managed the other chemo drugs pretty well so thought this would be a breeze for some reason. I guess I forgot what Taxotere was like before because I was so drugged up. Fatigue has always been the big issue--I crash hard every night after work, and I need two hours in the morning to get my feet under me. Then I have a 10 hour day. My first experience on this regimen: The infusion took most of a day, and I was able to work through most of it on my laptop, after a little Benadryl nap. I'm getting infusions on Fridays so I have the weekend to recover. I felt pretty jetlagged all weekend, but OK. I actually did a lot of yard work while I had the energy. They really loaded me up with steroids, so I would be awake at 3 a.m. scanning recipes and cleaning out my filing cabinet, but then be so tired the next day I could hardly stand, but so jangly I couldn't sleep.

The next five days were the worst. I felt like I'd had the flu or had been mugged. Every muscle and joint ached. I was unsteady and dizzy. I was seeing everything through a blue filter. Later in the week, the glands on my neck got swollen and I had a low-grade fever. I had been drinking a half to a full gallon of water every day too. I also got so constipated it was excruciatingly painful. I have been on morphine the past 2+ years, which I think has always counterbalanced the chemos that can cause diarrhea, so I've never been worried about bowel issues. So I took Metamucil and ate more foods to help with that issue. Of course, the tables quickly turned and now I'm afraid to venture too far from a bathroom. It's unpredicatable. Oh, and especially since the Xeloda, the lining of my nostrils has been raw/bloody/sometimes infected. It hurts and is annoying. Thankfully no one can tell. But immediately after the infusion, the insides of my nostrils just wanted to bleed if I blew my nose, and they were always running like I had a cold, as happens. So now I get a buildup of bloody scabs in there that I have to leave be. It's the most minor thing that makes this so intolerable. But there is nothing to be done. And of course now the eyes water all the time. I also think I look bad, pale. 

About 11 days after the infusion, the first hairs started falling out. When I took Taxotere before, my hair didn't start falling out for a couple months. That was not typical though.

Sorry to blather on. I just thought I'd share what the past 12 days have been like on this. I am hoping the second infusion goes more smoothly. If not, I think I'll have to go on medical leave again.

I'll be interested in reading other people's experiences with Perjeta and how you manage the side effects. I have felt very much left to my own devices with this. 

Good luck to those who are starting it and those who hope to. I'll try to share more later if interested. Right now the fatigue bat is clubbing me.

crap, this sounds like a crapy combo SE wise,

My next treatment is August 10. I am hoping the first one rocked me because the Perjeta was foreign and it was all a big load. I'm going to drink a ton more, sleep more, take fewer steroids.... I am really nervous now about the insurance approval. It must have been approved, right? I have a bill on my desk I'm afraid to open.  

Thinking of each of you as you plow thru these uncharted waters, and cheering you on.  Hoping for each of you that you get some relief from the SE's and feel better soon - SUE

Hi. i just joined this site and this post.  I too started this concoction and i do have to say it is kicking my butt.  I have been a survivor for 9 years now with upsets during (started stage 4 mets to liver, then 2 years later brain met, 2 years or so later lymphnodes under arm became involved again) had brain surgery again last fall but turned out to be scar tissue but none the less surgery. anyway, i have always been on herceptin then 2 years ago this month my lymphnodes in my chest became involved so i have been on a few different  chemos with some working then stopping.  my doctor was so excited for this to come out and for me to get started on it but you all know what happened next - insurance.  we will deal with that later. 

i guess i am just looking for some support to get through this.  the se are the worst.  my poor stomach - i need to just get this pooping thing under control (like going) and i think things will be better but the fatigue is so hard.  i remember in the past that after a week or so i started to feel better.  does this still hold true?  i sure hope so.  please i want to keep in touch and see how you are all doing on this new drug.  Hey, some of us we pioneers with herceptin and we did great.  now we are the pioneers for this and we will show them all.  we will give them courage, lets just get through this and give each other the support and courage now.  

Please let me know it gets better.

Michele

good morning.  no i am not in a clinical trial.  don't know what is going to happen when my insurance gets this.  oh well, i will deal with that later.  my doc is the best.  he has been waitng to put me on this and that is what he has set out to do so he really must believe in it.  seriously, my husband and i talked and figured lets just go for it.  it will all work itself out.  we are young with young kids and i need to live my life. 

yes, i do have all of the nose issues.  it was funny i was reading on here last night and saw that and couldn't believe it.  gross but managable.  i have a netty pot from walgreens and the solution that comes with it.  i think that should help a lot to use it 2 times a day.   well i will give it a try.  how are you sleeping at night?  that decadrone is making me wake up pretty early and my naps during the day aren't that good.  is that going on with anyone else?  does it ease up.  

i go in again on aug 16 for my 2 round.  i am hoping that it is like before first week down then start feeling well.  

hope you get a good nap in today and rest.

michele