Perjeta/Herceptin/Taxotere

Amanda796

My wife had her 5th treatment today and everything went well. We did get the CA27.29 results and this is the first time that we didn't see a significant decrease. They went from 43 to 44, started out at 194 .  The nurse acted like that wasn't a big deal and that stable was still a good thing and that the scans would trump anything that CA27.29 would show.  We can't say that we are not disappointed that they didn't drop like they had with the first four treatments. We were hoping to be in the "normal" range.  We will keep trying. 

For those that are more experienced with scans, do you always do CT scans or have you requested PET scans?  My wife was diagnosed with extensive liver and bone mets, if that matters.  It seemed that the initial PET scan gave more detailed information, but it seems that sort of testing is more involved. 

Thank you in advance for your responses and hope everyone is doing well.

fujiimama

I have ct with bone scan every 4 months. 43 is still a good number. Celebrate any victory you can!

Johnnaw19

Hello everyone. I was diagnosed Sept 19, 2013 with IDC grade 2, positive lymphnodes, stage VI (3 liver mets). HER2+. Not what I was expecting at age 32. I have 3 young children ages 4, 8 and 10. I'm about as scared as I can be. I started treatment on Oct 19th. Weekly taxol and perjeta and herceptin every 3 weeks. On my third taxol treatment I had a bad anaphylaxis reaction so that was it for taxol. I'm now doing taxotere, Herceptin and perjeta every 3 weeks and that seems to be going well. I had my first follow up CT last Friday (which resulted in another anaphylaxis reaction to the iodine contrast). We got the scan finished though. Good news is that all my lymph nodes have resolved. My breast mass has gone from 5cm by 6 cm to 2.5cm. 2 of my liver lesions have shrunk a bit and one has remained stable. All good news so far. Thanks for letting me chat!

positivenegative

this cocktail took this stage 4er from tragic to  magic.  ses blow big but so what options do i have....fight for life or crumple up and die....last pet was finally clean!  keep on rockin sisters.

fujiimama

Yay positiveneg... Love clean pets

Welcome johnaw19 sorry you had to join. I have kids 3-6-9. I'm currently NED (no evidence of disease). I am 39 soon to be 40. I'm down to just herceptin and perjeta every 21days. Hope you continue to see those lesions die.

Kjones13

johnaw19--sorry to have you join us and sorry for a rough start. Hang in there. Se's suck butt...results have been awesome! My kiddos are 9 and almost 3. They keep me going keep us updated. We are here for you!

RonnieKay

Amanda...my onc always says the same-don't sweat the markers, scans show the real picture...but I also sweat them & she just shakes her head!  You are so close to normal (and my onc would say 44 is normal!).  Down from 194 is awesome!  My ins just recently decided not to cover pet scans, so I have ct scans.  My onc is ok w/that & if she thought I needed a pet-she'd force the issue.  I'm a liver nets gal too-lots of em-but they're shrinking & maybe Wed, at my scans, they'll have disappeared-ever hopeful!

Oh my young sisters...bless you for being fighters!  For going through tough treatments & worrisome times...for doing everything you can to be healed & take care of your families!  Our legacy will always be that life & our loved ones are worth fighting for.  Love you all!

Trish03

Anyone on an AI at the same time as H&P?  While I was on Taxotere ,along with H&P, I felt that it hit everything. Now, since I've dropped Taxotere, H&P only target the Her2, I'm wondering if the ER+ cells are running wild. If I have progression, could it be because of the ER, which was greater than 95% in my liver biopsy?

I appreciate any help you can offer.  All the best to you. 

Hugs, Trish

Kjones13

I am not on an ai, but I am on tamoxifen. I started it when I finished taxol. I would think you would need something for the er status?

Trish03

Kjones, thanks for your response. That's what I was thinking, too. When I saw my onc on Monday, I asked him about this. He said he would check and call me the next day. Well, his nurse called Tuesday and said that after reviewing the research, he would put me on Aromisin. Since the PHT treatment is still relatively new, my onc has been sticking closely to the trial, so that's why he was a little hesitant. I'm the first patient he's had on this protocol. I was on Arimidex for 9 years and developed mets while I was still on it. I do feel better now that I'll be on a drug for the ER+. I hope the se's won't be too bad. I did OK on Arimidex.

fujiimama

Well I have my scans back. My MO is saying NED with a close watch on what he believes is a shadow on my lung, last time I had a blip he was right and it went away.  I have asthma and tend to get little blips now and then. I have been on perjeta and herceptin only since October 2012. So here is to another NED hAppy dance.

JillThut

. Fujimama!

Trish03

Awesome news, fujimama!

RonnieKay

Yippee Fujii!!!!   Am so happy for you...if I didn't feel crappy I'd be happy dancing    Have a little bit of a sore throat & since I had chemo yesterday, I'm pretending I need to stay in my jammies all day...and since it's 6 pm, I've pretty much succeeded in doing nothing...except finally catching up with my bc.org Sisters!

I had scans last week & had good news. Not NED, but onc said I'll never be classified that because my liver tumors were in the lining, which has caused scarring...and scarring will always show on scans. Other than that, she said that since my liver function, tumor markers & blood tests are all normal (and have been since treatment early on), and tumors shrunk so much, so fast, she believes there's no cancer activity....woohoo!!!!  She said I'd stay on this regimen, navelbine, hercep/perjeta for a while longer, and then maybe try to go off chemo & just do the biologics.  Guess time will tell if that happens, and if she tries some AI.

After I had taxotere, cytoxan & herceptin in 09, I went on femara.  Two years later, it was back, small enough that there was no treatment except mast & diep flap, (2mm & no lymphs) but stayed on femara.  A year and a half later - mets to liver. Ugh. So..I'm wondering if she'd do some other AI if the time comes that I can say bye-bye to navelbine.

Good to catch up a bit!   

fujiimama

Yay RonnieKay no activity is fantastic. Love pajama day!  Hope you're cold disappears quickly.

bhd1

I know most of you here were put on pht as your first chemo.  Are there any here for whom this is NOT your first chemo?  If so are you going to or have you dropped the taxotere and remain on perjeta and herceptin ?

fujiimama

B hd1 This was not my first. I was on the taxotere, carboplatin, herceptin originally. My MO only had me do two rounds of taxotere with my perjeta and herceptin, but I am not a normal case for anything.

RonnieKay

After reading about more sisters who've done more than one time on taxotere, I wonder why my onc said she doesn't do taxanes a second time.  Not that I really WANTED to...but just knowing that pht is a standard treatment now, wondering.  It sounds like it's working for our sisters, so that's awesome.  And...it looks like nav/perj/herc is working for me...so ever hopeful!  

How many of you who had mets pop up after thinking bc was a part of the past, sometimes feel....WHAT WENT WRONG?   I sometimes lay in bed going over all my treatments, wondering, wondering.....what if this, what if that....wondering when that will pass.  I'm feeling blessed to be getting through this treatment, and seeing good tests, etc...but still wondering.  XOXO

Trish03

Well, I'm finished with PH. My scan Monday showed some progression in my liver, so my onc wants me to start on Kadcyla/TDM1. I've read a lot about that drug, and I don't think the side effects will be as bad as PH; namely the Big D. He said we have two choices: Kadcyla or going back onto Taxotere. I really don't want to go back onto Taxotere until I absolutely have to do so. It's such a harsh drug. I guess I need to look for a thread about Kadcyla and start reading more about it so I'll know what to expect. 

This is a little upsetting because it's my first time to experience progression and to have to change drugs. I've always known that would happen one day; I guess it just makes the whole situation seem more real. 

I wish the very best to all of you. May you have a long journey on PHT!

Hugs, Trish

CarlaK

Trish- Darn it, I'm sorry to hear this news. You started PHT right behind me last spring and it seemed to work so well for you at first! Well, lets hope Kadcyla is a long term magic bullet for you. I'm getting scanned Friday, my marker is starting back up and I've got a new node in my neck-I may be following you this time. It all stinks!

Take care and hang in there-

Carla

Amanda796

Trish, sorry to see you move on to a new treatment.  The nurse said that they have seen phenomenal results with Kadcyla in their office, so I hope that applies to you as well.

My wife had her 6th treatment of P/H/T last week.  The tumor markers didn't drop as much as we wanted to between the 4th and 5th treatment, but this time they dropped from 44 to 26 (finally, normal range), so we are thrilled with that.  Scans will be coming up on the 18th.....2 days after her 34th birthday so hoping for a late present.  The doc has still indicated that we will keep the Taxotere as long as the scans show that it is still working.  She is still hanging in there as far as side effects.  Last time her fingernails had some issues, this time she says her mouth/tongue is tender and everything tastes terrible compared to prior treatments .  She is more than happy to deal with those SE's if the cancer continues retreating.

Continued good luck to you all on this treatment. 

Trish03

Carla, PHT did work very well for me for 6 cycles until we dropped the Taxotere. I was having over 30% reduction with each scan. I know some people continue to do well just on PH, but I had slight progression...not a lot and no new spots, but definitely some progression. Are you still on Taxotere? I hope you get a good report from your scans Friday. You're right, it stinks!

Amanda's husband, my onc has also said good things about Kadcyla. His group was a part of the trials, and he said they got great results. I just hope it works for me. It's scary to start crossing drugs off the list; this is my first time to have a drug fail. Has your wife had any scans since starting PHT? I hope she gets a good report on the 18th. It's good that she can tolerate the side effects of Taxotere; it's a powerful drug. I'll probably end up going back on it at some point. 

I wish all the best to you. I'll still be checking this thread and hope to see great reports from everyone.

Love, Trish

CarlaK

Trish-I stopped Taxotere after the 6th round, then did a couple rounds of P/H and then they took off the Perjeta because I was having radiation post mastectomy and there aren't any safety studies with Perjeta and radiation. My markers did go down with the combination of surgery, radiation and starting tamoxifen to hit the estrogen + stuff. But with markers starting back up I'm worried that I'm getting some Herceptin resistance since we didn't stick with Perjeta. But maybe adding it back would still help...guess I'll cross that bridge when/if I get there. I don't think I would ever go back on Taxotere-I had an inflammatory reaction in my lungs to it and I just hated the neuropathy, mouth irritation and body aches. I'd much rather try Kadcyla!

Dita183426

Triah so sorry to hear of your progression, you were doing so well.  Hope you are doing OK. TDM 1 is an amazing drug according to my oncs, its 100 times more powerful than standard chemo.  I hope you get long lasting results from it.

Ronniekay, some oncs are starting to reuse chemos that have been used in the past with the theory that the  BC cells will have become sensitive again if enough time has past.  My onc said two years or so.  T/h/p is standard care  because thats what was tested in the trials and so thats what is often suggested but given that you progressed on a taxane it makes sense to give perjeta the strongest companion possible and that would be a chemo that you havent progressed on.  Hope it continues to do its magic.

Trish03

Dita, I really was doing great until I dropped the Taxotere. It was very disappointing that I was one of those who failed on just PH. Some get a long run with it. I hadn't heard that TDM1 is 100 times more powerful than standard chemo. but I think that's very exciting news! I'm ready to hit it with the big guns!!!! 

RonnieKay, when I talked to my onc after my scans this week, he said I could either go back on Taxotere or try Kadcyla, so apparently some oncs do go back to a previously used drug. I told him I'd prefer to try the Kadcyla and save Taxotere for later. I know it worked really well for me, but it's such a tough drug on my system. My white counts got lower each cycle, and the fatigue seemed to get worse each time. Possibly the drug was building up in my system. I want to stay off of it for as long as possible.

All the best to you. Hugs, Trish

MicheTheVanquisher

Had my first dose of PHT Wed Feb 12th. After the chemo session I don't feel too bad. I had a cold before they started the chemo and my WBC was low so I got Neulasta and now I feel like I just have a worse cold and flu bug. Now I just try to take care of myself, Laugh A Lot!!!, and wait--hope it works. Oh, plus my sacrum is killing me since last night and I have some pain in my knees and hip joints but the sacrum pain kept me awake last night. It comes and goes, hard to stand up without grabbing something. Is this neulasta or one of the infused drugs?

MinusTwo

Miche - are you taking Claritin?  Not the "D" - just the regular.  Start one day before chemo.  Continue through 4 days after.  It has helped many of us with the Neulasta pain.

MicheTheVanquisher

Yep, took Claritin but not til after chemo since I had had WBC of 8000 week before chemo but it had dropped to 3500 day of (consistent with WBCC response to virus) so I ended up getting Neulasta afterall. The Sacrum pain is gone as is the pain in my legs. Now I just need to get over this sneezy, drippy, headachy cold. How fast do the drugs knock down your immune system anyway?

bhd1

I am worried about Kingcour.  Does anyone hear from her?

carolsue63

New here. Started TCH + Perjeta on January 15.  2 treatments down, 4 to go, I hope. I'll have a PET scan in March to see how it's working, but considering how much better I feel already, I'd say it's working pretty good. My diagnosis came about because of a cough that wouldn't go away. Chest x-ray in December looked clear, but then a CT scan showed I had pneumonia. Had a PET scan after that that showed fluid on my lungs (pleural effusion), so they did a thoracentesis to remove the fluid and found cancer cells in the fluid. I don't think they saw any actual tumors anywhere, just a kind of haziness in my lungs, and a couple of very small spots on bones. Since starting chemo, my cough has gotten a whole lot better. It's not completely gone, but I keep thinking maybe the next treatment will finish up the job. When I started chemo, I was having so much trouble breathing they had to put me on oxygen. My breathing has gotten so much better in just 2 treatments, I'm completely off the oxygen already. So I have high hopes that this stuff is doing the trick. 

Looking forward to getting to know all of you.