HERCEPTIN and/or PERJETA Threads
I am currently on Herceptin and Perjeta with Zometa every three weeks. Would love to hear from others who have been on this targeted therapy and how well the treatments have been working for you..
Comments
-
Teakie88, yup, count me in. I have been doing Herceptin for many years, and have been getting H & P together for the last year and a half (with a third drug, navelbine). I get zometa only every 6 months. I can report that I have been "holding steady" (stable) for the whole time I have been on the H & P - very few side effects, still have hair. I think it's a really good combo for us Hersies. Good luck. SUE
1 -
sueopp: I've heard a lot of people that have Navelbine as part of their regiment. My onc has never mentioned it to me one time as part of my targeted therapy. What can you tell me about it; why was it added to your treatment plan?
0 -
Teakie, the navelbine was added to my combo because the doc feels that it acts as a catalyst for the other 2 drugs (1+1+1 equals 4). I recall that many of us on H&P have had a 3rd drug added at least for some of the time, most either navelbine, taxol or taxotere. Makes me a bit nervous about dumping the navelbine, but I won't miss the side effects of the chemo. Best to you, SUE
0 -
does Navelbine cause hair loss?
0 -
Hello Teaki88 - I have been on H&P alone since June this year. On day 5 after treatment pain in my upper back and shoulders increases for about a week then goes back to the usual pain. I have had pain in my upper back and shoulders since March this year when I started Taxotere and H&P. I have pain meds that help tremendously. In regards to my bone mets, they have not progressed and have remained stable since I started treatment in March. I have scans again in January. How are the targeted treatments working for you?-Karen
0 -
fitz, I lost my hair on navelbine yes
0 -
I started h, p, and taxol in October 2012. Finished taxol end of February 2013. Will be on h and p indefinitely (until it stops working). For me, this is my first line of treatment based on the cleopatra trial. I have done excellent as far as keeping the cancer at bay. The targeted therapies are truly a game changer for us her2 girls. I am interested in its success in patients who are adding it to their second or third line of treatment. Hoping it's just as effective! Good luck to you all!
0 -
H & P with Taxotere here too, on a 3 week cycle. Will be dropping Taxotere after my 6th treatment on Dec. 29 and going on maintenance H&P. It makes me nervous to drop anything that is working, but I'm looking forward to getting my hair back. I also get Xgeva every 6 weeks. This is the first-line treatment for me also. I had one scan half way through treatment, and it showed shrinkage in all tumors (primary in breast and several bone mets). I hope to meet that NED guy everyone talks about one day.
0 -
I just started that treatment, I am encouraged by the cleopatra study! I am wondering if it is a first line treatment for me because I had a/c and tax neoadjunct in may, with no evidence of mets, after mastectomy in September, bone mets. So I have had chemo but not as stage 4. Does anyone know?
Taxotere is a lot tougher than taxol! Oh well, since taxol didn't work well, maybe that means taxotere is kicking butt!
Kim
0 -
Fitz, I did not lose my hair on navelbine, but it did get thin. The doc told me that the thinning was due to the navelbine and not the H or P (?). SUE
0 -
mikarae: This is only my second targeted therapy with Herceptin, Perjeta, and Zometa since I completed chemo with Taxotere. Taxotere was a walk in the park for me personally with only some tiredness to be reported, taste buds whacked out, and some temporary eyesight problems back then. Once Tax was finished, energy levels went back up immediately, and I have no side effects that i am aware of with H & P. My liver mets have reduced drastically, any lung mets I had are now gone, and there are still some back bone mets in places, which don't bother me. My CA 27/29 tumor markers are in the normal range now, and my CA 15 marker is getting close to normal range. Treatments for me will continue indefinitely.
0 -
Teakie88: Your treatment has gone a lot smoother than mine. I keep telling myself that the benefits outweigh the side effects. My life has slowly become a welcomed routine. A slightly tweaked version of my pre-cancer life. I hope the H&P keeps working a long time. Have a wonderful evening.- Karen
0 -
Karen: I hope your treatment process continues to improve for you as time goes on, and that you, as well as ALL OF US, reap great benefits from these drugs for many years to come! Ann
0 -
Hi all-I did PHT March-July 2013, then Herceptin alone (plus Tamoxifen) for about a year, and in October we added Perjeta back because of the CLEOPATRA trial results. Taxotere-ugh, it did awful things to my lungs and caused miserable muscle pain, I won't be going back there again! Herceptin alone is easy, just a bit of fatigue and drippy nose. Going back on Perjeta makes infusion an hour longer and causes more achiness but that's gone by the next day. My main side effects with Perjeta are diarrhea, fatigue, and it makes my neuropathy a bit worse. But if it keeps me stable, I can deal with that. I know there are much tougher treatments out there!
0 -
Hey...good to see many of us & hope to keep this thread around a long time! Sue & I were Navelbine/hercep/perjeta twins for a long while...with the result of stable...thinning hair & cramping, but stable! After 22 months my new onc (former out on indefinite sick leave) said it was time to give my body a rest from Navelbine (with my scans & tests good), so I'm on hp & femara. I did tax/cytoxen/hercep 5 yrs ago & did well..hercep for the year w/no ses. It's only been 6 weeks off chemo but on this regimen, I have more energy. I have a bit of a sore back in the evening but I think it's the femara (did it w/first dx & had the same for a couple months, then went away). My onc said he's plotting when to ditch perjeta....don't know why, but I think it's contributed to my declining eyesight (heaven forbid it's age!). So hope this work...for all of us!!!
0 -
bump
0 -
Hello all, I get my scan report tomorrow (Atavan tonight !) and then we shall see if the wizard just drops my navelbine and let's me maintain on H & P or adds something else. Man, it's always something ... SUE
0 -
sueopp: Ain't it the truth! Hope all goes very well for you tomorrow! Ann
0 -
sue, good luck w the scans. Prayers and hugs. I care. Barb
0 -
bhd1: Since you have same diagnosis as me, was wondering if you are also on H & P targeted therapy, and if so, how is it going for you? A short history would be appreciated I'm sure by all of us. Ann
0 -
Hope the scans report goes well tomorrow sue. I'm with you on the Ativan! - Karen
0 -
Whew! Got a pass - scans showed no changes, still stable. Those boogers are still there, but haven't gone anywhere or gotten any bigger.Now I can forget about it for 6 months - sorta. The wizard is dropping the navelbine due to toxicity side effects, and I will only get H & P once every 3 weeks. I asked how long folks go on maintenance H& P before progressing, and he said the average time is about 9 months. But we know all about "average" estimates, right? Meanwhile it's a blessing and I'll take it. Thanks for the good wishes girlfriends. SUE
0 -
Congratulations on your stability Sue. What good news! I'll be going to maintenance H&P in 6 weeks. I thought the average was 18 months, but like you said statistics don't mean much anyhow.
0 -
wow sue. Good for you. Fantastic news
0 -
That's great news Sue! I'm so happy for you.
0 -
I'm 21 months progression free on maintenance h and p...you go sue!
0 -
YIPPEE!!!!! Good news for all of us, K! SUE
0 -
Wow kjones! That is fantastic
0 -
Absolutely fantastic news for you! We all hope you continue to do fantastic! Ann
0 -
I'm in this group. Diagnosed stage IV from the beginning in March of this year. Began taxotere, herceptin and perjeta. I was to do 6-9 rounds of taxotere but stopped after 3 due to toxicity. So, I'm currently on Herceptin and Perjeta every three weeks for the foreseeable future.
The first infusion of herceptin was paused so I could get morphine for pain. Turns out, tumors being shredded by Herceptin hurts! A lot! Once pain was controlled, resumed treatment have haven't looked back. The tumor in my breast is no longer palpable and the tumors in my liver are getting very small. Before I started treatment, you could visibly see the liver tumors when I lay on my back.
I read a different message board occasionally for HER2 and a woman posted this in September...
I wanted to share with you, that once a year, I get to go to a dinner with a few other cancer survivors from the Jonsson Comprehensive Cancer Center, it is a donor dinner. Two years ago I met Ginger, she is one of the original ladies on the first Her2 trial. She was featured in the movie. She is alive and well at 70. When she went on the trial she was almost in liver failure, her liver was covered in mets. She is no longer on any treatments and is living happily in Bakersfield.
I find it very inspiring that the lady from the very first Herceptin trial is alive and well. I like this kind of news!
Cheers to us all!
0
