Perjeta/Herceptin/Taxotere

Penny...I'm not on the taxotere part, but my navelbine & herceptin were approved almost 3 weeks before perjeta so I'll bet it's happening any time.  I also found out, through the mail, that it was approved before they contacted my onc office so if I were you, I'd ask your dr office to call....every day!  Good luck...it's so emotionally draining to know that it may be the thing that saves you..and they're in no hurry to get it to you!  That's how I felt.

Have any of you had a rise in your blood pressure since this whole thing started?  Over the past 3 years, mine's just crept up slowly and no one seemed too concerned.  In October my gp put me on a low dose of bp medicine to help it...sometimes it's low, sometimes high.  Just wondering.

Pear lady did you try lomotil every 4 hrs round the clock for D?

Redmond, I started taxotere, herceptin and perjeta in September. I was diagnosed in August with several mets from the get go to the liver and three breast tumors. Three treatments in I was NED and still am after six treatments so I have dropped the tax now. I just had my first infusion with just p&h on Monday. Hoping for the best!

Got my results and my bone scan and ct are both clean. I also had a node on my lung my onc wasn't ready to call cancer has complete resolution. I've been doing p/h only since October. My 11 wedding anniversary is this weekend. I can't think of a better way to celebrate. I'm praying everybody gets there.

Spamgirl, sorry to hear you are dealing with D. after C. I actually had both when I started this combo, they were just taking turn on me! Imodium has done wonders for me for the D. and as far as the C, eating a banana and drinking a lot of fluids has been more efficient for me than any pills.

Congrats Fujimama and Aic!!! I am hoping to get there. I had chemo#5 today and my onc said that if my next scan (after 6th round) show good results, I will be taking only P&H. Are you ladies having your hair growing back and less side effects?

Redmond I started the Perjeta/Herceptin in July.  I had been on just herceptin prior.  Am also taking afinitor along with aromisin and tamoxifen.  The perjeta has kept my markers stable, even though they are around 200.  My markers tend to be very reliable, so my onc is satisfied at this point and doesn't want to start faslodex unless he has to.  He's hoping that when the TDM1 replaces the herceptin, that my markers will go down more.  I understand about being anxious to be on some type of treatment.  You should be approved for the perjeta.  My understanding is that perjeta was approved for women  who are stage 1V and have not been treated previously for stage 1V.

BHD1 I do take Lomotil, but not that frequently . I will trying taking it more frequently during the day.  I also take opium tincture, which really does work, but I try to only take that when I have someplace special to go.  I don't want to get too used to taking that all the time.  My onc also just prescribed an injection, Sandostatin, which I am waiting for.  I've had it before in a higher dose and really didn't like how it make me feel, but he suggested a lower dose which I'm willing to try.  Some women have said that it does help.  Other than the D, I feel good.  I don't know if anyone else has had this issue, but the D was so relentless that I had low potassium which was really draining me.  I now take potassium twice a day which has definitely helped with the energy. 

Congrats to Fujimama and AIC.  So glad that this combo is working.   

Thanks for sharing that Aic. The Benadryl on infusion day makes me tired also. But hearing that you manage much better without the Taxotere and the hair is coming back sounds awesome.

Hi Ladies, I thought I posted an update a few wreaks ago but couldn't find it.



I am so thankful I found this group in October when starting p/h/t. It Made me feel sane bc others were having same issues with the side effects. It's also where I received good info to manage them. When I started perjeata, there were no threads except this one addressing the BIG D. Nothing in literature.



This combo was rough for me. I did 4 treatments I think. Scanned and everything was stable with mild improvement in lung nodules and effusion!! So it was worth it. The last dose I received was with taxotere cut to 50mcg. That gave me better quality of life. So to anyone just starting dont hesitate to ask about dose reduction. And Make sure you keep

Hydrated and get fluids if dehydrated.



Even though I was stable on p/h/t , My chance to crossover and get TDM1 finally came through in Jan. I just did my second TDM1. I can come back to p/h/t if need be. Hang in there ladies.



Hoping for good results for all of you.



Kelly

Oh Lorijo..I'm so sorry tx was a bugger the second week!  And to get such awful treatment at the ER just makes me ill!  I'm glad they want names & I hope someone takes action...but it didn't help you  103 is a definite "NEEDS TO BE SEEN"...especially knowing you were on chemo...ugh!  Hope this weekend is restful...I love my bed too. 

Redmond..I know what you mean just waiting for treatment to begin!  Diagnosed 12/21 and when I finally had the meeting w/onc after all the scans, biopsy, etc, saw onc on 1/9...and she said, "Let's start treatment today!"  I was totally freaked and asked to start the next day.  I never thought there'd be a day that I said I was glad to be back in chemo!!!! 

Pearl...I had no idea that's what the TDM1 is!!!  It kind of scares me to think of something replacing herceptin..although I had it for a year 09-10, and it didn't quite work the miracle we'd all hoped it would....sorry to sound like a downer...cause I am alive and it's "only" in my liver so maybe it did arrest many bad cells.  I'll be asking my onc about it next week!

OMG...AIC & FUJI...your good news feels as if it's happening to all of us!!!!  It's the most wonderful feeling to know we all celebrate these momentous tests and scans.  I was ecstatic on Thursday when my chemo nurse came in and said she'd just read my blood tests and my liver enzymes ROCK!  She said they were in the normal range...that after 3 treatments.  Said my tumor markers were good (although they always are!), but my wbcount was down so I had to forego Navelbine   I talked to my cousin and said I was so sad I didn't get chemo...she said, "I'm writing that down...sad cause you can't have chemo!"  It did sound goofy but...HEY...my liver enzymes are NORMAL...that's a really good thing...and I want those NED dances too!  I had my herceptin & neulasta...which the past couple days have given me some aches in the ribs and hips...big time! 

Kaelia...I'm just a couple tx behind you...waiting to hear good news after your next tx..it'd be awesome to be just on h/p!!!

Spam...I think I'm enjoying the bounding effects of navelbine...when I hear what perjeta does! 

Sending all healing, happy thoughts for a beautiful Sunday!  Our DS, DIL, Grandaughter & Doggy are going home to CA after 6 weeks.  Loved having them here but it sucks not to feel well enough some days to do the normal fun Gma things.  Some day soon...I'm sure! 

Pearl...When I was told I was stage IV, my onc took me off my femara (which I'd had since first diagnosis 09), and said she wished she'd have been able to keep me on herceptin the entire time.  Did you stay on it because you were stage IV?  I don't know if it was insurance or what...hindsight 20/20.  So...when you're able, the TDM1 will replace herceptin but you'll stay on perjeta?   

Well Ladies, it looks like I will be joining this club next week.  I have been on TDM1 for the past 7 months and it worked great on my liver mets but not so much on my lung mets.  I had some progression in my lungs on my last scan so I am off the trial and am suppose to start this combo next week. I'm nervous!!!!! I HATE the D! I've been lucky and not had a ton of bad side effects since I've been stage IV.   Anything I should do or take before the chemo to help with the D. 

King our have you thought anymore about surgery for the breast tumor.?

Yes, I will have a scan after my last tx in march. If all is still clear, I will go on P and H only and have the surgery. I just want to be done with the mother ship!

Which drug gives us the big D? Inquiring minds want to know.

For me the big D hits from Perjeta a week before the next treatment. It's definitely from perjeta.I was on herceptin for a full year with no big D. Yes I am a bit of a rule breaker, I was treated at stage III with taxotere and herceptin along with carboplatin. Got the NED and survivor talk had my last herceptin late April and my port taken out. scheduled to do an oopherectomy so I could go on femera (tami hated me). By June 2 my t11 had a met that had eaten 30% of the bone. Instead of getting an oomph, I got a titanium cage and rod. Going several months without any cancer "birth control" was not good. My oncologist will never take me off either herceptin or perjeta as long as my body will tolerate it. I know per/her/tax was supposed to be for stage IV that hadn't been on herceptin before. But some how my oncologist worded it right because I was accepted for it. How many of you have been on her before? I also get zometa now and depolupron to chemically shut down my ovaries. I feel like a walking bag of chemicals. My hair is growing back fast which my oncologist giggles at. He said that with all the chemicals they're putting in me they love seeing people with hair. Never thought about what it must be like to see people all day that you are trying to help by making them feel crappy and bald. :-) I know it another long winded post. It's nice to have people who get it reading. I'm having to stay up. My 2 year old got a tummy bug, dh went to get pedia lite. I'm on puke duty. No excuse not too. My wbc is normal and I'm pretty sure I had the bug first. Ha aha! I'm so used to feeling crappy I can't tell when I'm sick. This bug is going through the house with no fever. Ahhh rambling again! By all for now have a great evening.