Perjeta/Herceptin/Taxotere

i am so sorry bondgirl.  it is disappointing, but don't give up.  there are lots of options for you.  i pray that your next tx is easy to tolerate and kicks the mets way back.  let us know how  you are doing.  we care.   barb

Bondgirl I am having my first TDM1 on Thursday.  My markers have been somewhat stable on the Perjeta/Herceptin and Afinitor, but the big D is just too much and has not gotten any better.  My onc says that we can always add the Perjeta to the TDM1 if we don't get the results that he wants.  I am so looking forward to a break from the perjeta.  I am totally sleep deprived as I am not too bad during the day, but all of the problems with the big D are after dinner and continue on until very late.  I can't remember that last week night that I had more than four hours sleep.  Also feel that I am not not digesting a good portion of my food.  Can't believe I am looking foreward to gaining a few pounds.  Now that is a new experience.   I will continue taking the afinitor and temodar along with Aromisin and Taxomifin.  Praying that I get good results from the TDM1 and that you do also.  I hear it's much easier to take than the Perjeta.  I guess I am fortunate that I haven't been on the taxotere as my onc didn't think I had to have it at this point.  The afinitor can be tough sometimes with the Big D, but it will now seem like a party after the experience with Perjeta.  Prayers for you and I hope that the TDM1 will work for you and for all of us a long time. 

Aic congrats on NED



Bondgirl, sorry about progression.



I just had my 5th tdm1 infusion. I feel wonderful. A little tired. No Big D in 4-6 weeks.

P/h/t had me stable but losing weight and unrelenting, no quality of life BIG D. After losing 60 pounds I gained 3 pounds!! Finally can eat and go out. It's amazing.



We are not scanning on TDM1 bc I Waited so long and I'm getting in as a trial as my onc will not have it until may.She doesn't want to look for trouble since I finally at cycle 4 started feeling better.



Good luck to everyone!!

Shaysmom that is so good to hear how much better you are feeling.  I couldn't stand the Perjeta anymore and my onc finally agreed that since the TDM1 is available we should try it, so I am starting on Thrusday.  I am so looking forward to getting rid of the big D and to gaining a few pounds.  The thought of actually being able to plan an evening out and not having to take the Opium tincture to prevent the big D is so wonderful.  I just wonder how long it will take for the big D to actually disappear.  I am not in any trial.  My onc was able to request from my insurance, and for that I'm so thankful.  Good luck to everyone.  I hope this works for a very long time for all of us.

this is embarrassing , has anyone suffered extreme anal itch from pht?   if so, what is the treatment?  i have this for the first time in my life.  so unconfortable.  the only thing that helps is tucks.    vit e, desitin, prep h,  all make it worse. 

lilylady isnt momostat for vaginal yeast infection?  how would i use it for anal yeast infection?  or could i use monostat for anal yeast infection?

Hello.  I wanted to introduce myself.  I have been on TDM1 since Nov 2010 when I was diagnosed with liver mets.  It worked wonders for me and it was very manageable.  I was NED for 1 1/2 years.  I had a PET scan yesterday and I have a new Liver met.  I met with the onc. today and she wants to tried to get me approved for perjeta/herceptin/taxotere or weekly taxol.  Any suggestions?  I had TCH when I was first diagnosed in 2008.  My question for you is if you had a choice would you take the taxotere every 3 weeks or taxol weekly and why.  Also are there any other combination being used out there with the pejeta/herceptin for example along with xeloda or something?

I appreciate any feedback you can give.  Sorry if this is all over the place but I am still in shock from the pregression and very sad to lose my TDM1.

Laura

Thanks SPAMgirl.  Good luck on TDM1.  I loved it.  I am so upset by my progression although 2 1/2 years is a long time I thought I would ride off into the sunset with tdm1.  So sad our love affair is over. 

Sorry for the progression, Spam...and all of you who have moved on. Best of luck on Tdm-1 ...I'm looking forward to it myself but like many of you, I don't want to burn out on this treatment too soon but so far am not dealing well with the side effects...mostly fevers and extreme fatigue.

http://community.breastcancer.org/forum/8/topic/792169

Pear lady

I am praying for you and wishing you much luck. Let me tell you . It took 2 cycles of tdm1 for the D to get better and for me to have an appitite and feel beter. After 3 tretament I started to have energy . I do have decreased appitite a few days on TDM1 but then it bounces back. 

Not only did hubby and I get to go out to eat, We actually went away overnight. I was able to drive two hours each way to a hotel, we ate a really nice dinner out and breakfast the next day.. NO diarrhea at all!!! It had been almost a year since we were able to do that . Its like a miracle. I have qulaity of life, I am ENJOYING my life. whatever time I have, the TDM1 has me living. food tastes good and I never thought after gemzar and then Perjeta/taxotere/herceptin that I would go 3 weeks with no diarrhea, and be able to add some diary and caffiene back into my diet. that I could actually eat food, it taste good and not be sick. I never saw me getting here. I am able to foodshop, go out, sat through a play with my son at his school. I have energy. I do still nap and today after busy Easter and treatment I slept today away. But its not everyday, its not crushing fatigue. Probably bc I have good nutrition again. Previously some weeks my labs came back I was malnurshied. 

So dont be disppointed bc for me I saw no great difference the first treatment but my onc though it was still side effects from taxotere. My GI was so messed up. Second was alittle better Third was ok and by fourth it was good and 5th AMAZING. I do take steroid to help me eat for 3-5 days after the TDM1 bc I was down 60 pounds. I have a feeling I will not need it much longer. We will scan after cycle 6. I just pray its working as well as I feel. 

Praying you get a long time of feeling great on it. And to everyone else, whatever you are on I hope it works wonders for you. 

Kelly 

Apr 2, 2013 04:41 PM pearlady1 wrote:

Shaysmom that is so good to hear how much better you are feeling.  I couldn't stand the Perjeta anymore and my onc finally agreed that since the TDM1 is available we should try it, so I am starting on Thrusday.  I am so looking forward to getting rid of the big D and to gaining a few pounds.  The thought of actually being able to plan an evening out and not having to take the Opium tincture to prevent the big D is so wonderful.  I just wonder how long it will take for the big D to actually disappear.  I am not in any trial.  My onc was able to request from my insurance, and for that I'm so thankful.  Good luck to everyone.  I hope this works for a very long time for all of us.

I am now going to be moving on to this thread.  My onc is starting me on perjeta in two weeks as an addition to my herceptin and Xeloda.  She was actually going to just keep me on the perjeta and herceptin but I asked to remain on the Xeloda since I'm not comfortable not being on any chemo.

I've read about some scary sounding SE's on this thread but most people have seemed to link it to the taxol or taxotere they are also on.  Does anyone have any info on SE's for just herceptin and perjeta?

Kelly thanks so much for sharing your story and offering encouragement.  I am so happy for you that you've gotten your life back.  Your story gives me so much encouragement.   Also, when we're feeling better and not malnourished, I believe that our immune systems can kick in.  Even with big D I've had on other drugs, I've never felt malnourished as I have on perjeta. 

I just found the perjeta so relentless with the big D never letting up and being totally unpredictable.   I was not on the taxotere with the perjeta, but was taking perjeta/herceptin/aromisin/afinitor.  I will stay on the afinitor and aromisin, but the afinitor at a slightly lower dose.  That also causes some big D issues, but nothing nearly as devastating as the perjeta.  Much more manageable.  I am so looking forward to going to the theatre, concerts and and opera again without checking out ahead of time where every bathroom is and without having to take that awful opium tincture before I go.  My issue with the perjeta was very strange.  I would be fine most of the day, but the big D would kick in around 5:00 pm and sometimes not let up until 12:00 am. Then it would be difficult to sleep.  Not only was I malnourished, but sleep deprived.  Taking Ambient or Ativant doesn't help much when I was so depleted from hours of big D.  It really didn't matter what I ate.  If I had coffee and dairy in the morning I would be fine.  Anything I would eat after 4:00 would cause terrrible gas and big D, not matter what. 

Well I had my first TDM1 today.  I was so excited I brought 2 dozen cupcakes for everyone in the onc's office to celebrate with me.  The infusion was quite easy and the nurse said will be even quicker next time.  So far not too tired, but I'll take a bit of tired over what I had previously.  I just feel that each day will be better.  Certainly your experience give me great encouragement.  I am praying for you that the TDM1 works for many years.  Sending you positive energy for good scan results.  Prayers and healing to all.   Monica

Dormouse I've been on just the perjeta/herceptin with zometa and very rarely get the big d. I've been going on trips, dinner dates,etc. Other than some extra fatigue I usually feel ok.