HERCEPTIN and/or PERJETA Threads
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2ndtime...you DO need to be here for your kids & you do need to vent...we totally get it! This journey stinks...but we're going to focus on THP taking care of those supra...whatever!!! That's a mouthful & I don't really know exactly where they are...but I know taxotere is flowing through to knock their socks off. Prognosis for liver, or really most any kind of mets, isn't good, but many of us are still here, praise God & brilliant minds who develop drugs & devote their lives to helping us. We're right alongside you, keeping you strong :-)
Oh BabyRuth...it sounds awful. I didn't have any rash w/tax/cyt/h first trip, but I know I've read of others who have. I hope they provide help. Good call to onc. I had puffy eyes once on nav/h/p & tried cortisone cream. I told my onc & she said not to use it as chemo makes skin so sensitive it can damage it....but that may be the eye area. Just make sure to keep the areas really clean...white cells can take a hit on tax & don't want any infection. Hope it heals fast!!!
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shutter--happy cancerversary...well not happy, but one down and many more to come! Hope these drugs carry you and all of us for a very long time :
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Greetings everyone! Have just returned from a 10 day hiatus and am so glad to be back in touch. Spent 5 days at the annual meeting of our family tribe in Chincoteague VA, and am pleased to report that a) I did not get a port infection (as I have the last two consecutive years) and b) I did not get a sunburn. I survived the vampire mosquitoes thanks to good advice from my BCO buddies. Our gathering was so very wonderful this year - easy, comfortable, great fun with lots of pool, lawn chairs, food and a pack of kidlings running around. Glorious.
To share an important victory: I also had 5 amazing days with two of my grandchildren (ages 5 and 10) while their parents went on the first vacation without kids in 10 years - to Italy. My husband was away over this week too, so the kids came to my home. It was the most wonderful 5 days that I have had in a long time. We did it all - cat show, pool, science center, picnic, stories at night before bed, watching Disney movies, paging thru National Geographic. I will tell you that initially I was terrified. I was so worried that I wouldn't be able to keep up with them, keep them safe and happy, that fatigue would do me in, and what would happen if I got sick? Well, none of that happened. We were all happy and safe and busy. To cut to the chase, 4.5 years ago I thought that I would be dead by now, and agonized over how or even if these kids would remember me. Naaaaaa! I am so completely exhausted, but so very, very happy. Victory! Onward! Love to all, SUE
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Hello Everyone,
2ndtime - We all understand and are here for you. Please feel free to rant! We all need to at times.
Shutterbug - When you think back over the last year, aren't you amazed by all you've been through? So happy you found this site.
RonnieKay - Thank you for staying with us. I'm glad to know the side effects of Perjeta decrease rapidly. As I crawled out of bed and crept stiffly and gingerly across our bedroom floor this morning, I thought of you.
Sue - Congratulations of your successful time with your grandchildren. Oh how you must love them and them you!
BabyRuth - I had a terrible rash the first two treatments of Taxotere. The doctor gave me antibiotics and steroid cream and it cleared up. Boy did it flake. It was very ugly.
I had an emotional meltdown last night. It was triggered by a missing vacuum nozzle. It was a doozie. Like I had so much bottled inside of me that had to come out. My poor husband. I'm feeling guilty this morning but emotionally better.
Hoping you all are having a great summer.
~ Karen
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sue--yay! So glad you had a great vacation and some valuable time with the grand kids! Impressive!
Karen--glad you got it all out. I bottle emotions up too. They come out at the strangest times
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Mikarae...I think I've come unglued about a vacuum part, too, or the dishwasher! Thank goodness those are our power struggles, right...LOL! I bet you have an adorable DH that totally understands :-)
Shutter...I think we were all typing at the same time & I missed you 1 yr woohoo celebration! So happy & also pray we grow very, very old together!!!
Oh SUE...I know how good life is with your Grandkiddos & I'm so happy & excited that those 5 days were filled with great moments for the 3 of you! Those are memories to last forever! What an amazing Gma...it all sounds like perfection & I hope someday my kids leave for more than a day or 2 so I can do the same (appreciate the tips!). I think of how joyful their Mom & Dad are that you're still here...and doing great!!!!
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Just wanted to pop in for a minute to say that while at my monthly appointment today, I had just finished up with my oncologist and was walking out of the patient room with her when she happened to throw out this little tidbit of information at me. She said something to the effect that there is another HER2+ drug coming down the pike. It think it's still in clinical trial, but I'm sure she wouldn't have shared that with me if it was too far down the road. I'm thinking somewhere within the next year. She took me so by surprise when she just said that out of the clear blue that I was trying to get my chemo brain to absorb that info. Unfortunately, another patient was passing by us talking just at the very time she gave me the name of the drug, and it was lost in the noise. I "think" the only letter I heard was the first, and I think it starts with an "M". Maybe one of you already knows about it, but I was excited by the prospect of another possibility out there, as we need all the options we can get. I remember her telling me at the appointment I had with her before this one that I had several options available to me, so I remember thinking then that she must have gotten some info from an ASCO recap meeting she went to in St. Louis in June. I have my treatment next Thursday (27th), and I'm going to see if I can get the head IV nurse to have her jot the name of the drug down for me, after which time I will pass that info on.
I'm also seeing on TV as I'm sure some of you have seen as well, MD Anderson has been doing a lot of advertising about immunotherapy, so I'm guessing that this will hopefully (soon) become a reality in launching another attack against cancer! Never thought I'd say if there was ever a time to have cancer (never would be better obviously), it might be now with all the advances coming out. HANG IN THERE --I think "chronic" versus "terminal" may become a reality in the near future! When life hands you lemons, make sure your glass is half full of lemonade, not half empty!!!!!!
Best wishes to all--Ann
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Thanks for the good news, Ann. I have an appt on Monday with oncologist, and I will ask him if he has heard anything as well. You are right, I am so grateful that this is a time when science is coming up with some options for us. Wouldn't it be wonderful if we really did become chronic rather than terminal? Hope is a good thing. SUE
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Maybe she was talking about MM 302 which is in trial right now.
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Everyone thanks for kind words. So glad to read about you Ladies enjoying life & grandchildren! Keep the nice stories coming. I am very sick from RD #2 THP, I am dreading four more rounds. Please dear God let this make me stable or NED. Prayers & Love to all
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excited to hear about a new Her2 drug. Thanks for sharing this info.
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Re MM 302 (potential new drug for HER2+ breast cancer)
The ongoing trial is called HERMIONE. It's apparently still recruiting BUT not everyone is eligible.
See http://www.hermionetrial.com
Summary poster here http://www.merrimackpharma.com/sites/default/files...
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I am getting herceptin & perjeta every 3 weeks, as well as taking femara... my arms get what i call hot spots... my forearms itch terribly. I also have a prickly sensation on my head and arms.. does anyone else have this? My onc hasn't had much response when I tell her about it. ..
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Hi luv2fish, I am on H, P and taxotere, I get tiny little bumps on my chest, arms and legs. Sometimes they itch and sometimes they don't. I've read where others get a rash as well. I get a prickly sensation on my head, not arms. I was paranoid about skull mets but my MO reassures me this is not the case. Hope this helps. My worst SE are the 2 or 3 days of mouth sores. Oh and the hair loss.:/
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txmom, it will get better when you are done with the taxotere. I didn't have mouth sores, but had horrible chapped lips on taxotere, found something called chopsavers, it's for musicians, it was a godsend for my lips
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Thank you for the hopeful update Ann!
Wishing you all a very nice weekend.
~ Karen
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Hello all
I have been very recently dx'd: Mastectomy June 2015 staged me at IIIA but a PET/CT in AUG reveled multiple bone mets. I am triple + so I will engage with targeted therapy: herceptin and hormonal therapy: tamoxifen
I am wondering if anyone here has had just these two therapies and if you could speak to your experience /side effects. I REALIZE everyone is different, but I would love to hear from a living/breathing being and not just read a 'list of possible effects' put out by the drup companies
I'm a bit freaked all around, of course for the mets, but also the drugs as I haven't even taken an antibiotic in over 30 years.
I guess it's also the fear of being altered in how I feel, because right now I feel like my normal energetic healthy self.....
Thank you for 'listening' Any thoughts appreciated!
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Gaia--I have been on herceptin and perjeta since October 2012. I started tamoxifen in March 2013. I honestly can't pinpoint which drug causes what side effect, so I'm not much help. For me, these drugs have been very tolerable and effective! Bone pain, fatigue, nausea, trouble sleeping, runny nose, and constipation are my usual se's, but I am on a lot of other drugs so who knows?! I will celebrate 3 years in September so I am very thankful for that. I have been one of the lucky ones. Best of luck to you
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Thanks for your response Kjones. I see that most get H & P together-
It's a little tougher to gather info from people who are doing H alone and as a first line treatment- but I'm sure I can't be the only one!
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Gaia-I've been on both Perjeta/Herceptin and Tamoxifen and also Herceptin and Tamoxifen alone. When I'm not on Perjeta the side effects are pretty light. Herceptin gives you a drippy nose, Tamoxifen causes hot flashes and some achy joints first thing in the morning for me. I think the longer you've been in treatment the more general fatigue you have but I'm still working part time and running a household with 2 teens. These treatments are very doable
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Thanks Carla
I do realize everyone is individual but hearing from real people helps.....
have you or can anyone speak to hair thinning or vaginal atrophy?
Sorry but I am clearly in the freaked out 'what if' unknown place!
At least I will have a 2 week head start on the Tamoxifen before I pile on the Herceptin
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Hi Gaia0132, I was initially on tamoxifen and H&P then switched to Taxoterrible H&P after a month. While on tamoxifen I had mild hot flashes and felt sweaty/clamy all the time. I also had headaches. Low grade. I read on the triple positive thread where women on tamoxifen, long term, have vaginal dryness and atrophy. Astroglide is recomm
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Gaia...ugh, sorry you've found yourself on the mets path, but glad you found us & happy to help with any question...except I'm not much help here. I'm not familiar w/ standard tx for bone mets (liver metster here). You didn't need chemo? After finishing 4 rounds of tax/cyt/her, her hung on for a year. I added femara to that & really, aside from bone aches for a couple months, I had no ses...but tamox is a different animal, I know. As for dryness...I didn't experience it w/her & femara...but chemo did a number on me. Prob my least fav se & yes..ky or astro or whatever works :-)
Teakie...I saw my fellow last week & asked what the difference is between vaccine & immunotherapy...too complicated for me but to hear his positivity makes it all sound promising! I'll talk to my onc in Oct about that and the new drug. Along w/just herceptin, I have moved to 12 week blood & TMs, along with onc appt. I'm just a tad nervous, going from 3 week TM's & blood. Guess it's a positive move...just staying hopeful!
Have a great week all!
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Thank all for your replies RonnieKay, txmom , Carla and All
I welcome more! please speak to me even as I say this out of fear and anticipation:
As I grok/understand we are lifers's so as much as it SUCKS to be out of the state with stage IV/mets- it puts me on a maintenance path-which I needed to advocate for- some get it some not
I am here for QOL and the long haul I don't want to blow out options... even though I realize T and H have their limits
Ronnie you also mention immuotherapy?- anything to share there?
hugs
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re Tamoxifen: I was 49 when I was diagnosed, periods were already getting irregular and I was having some minor hot flashes prior to starting treatment. Chemo followed by starting Tamoxifen sent me straight to menopause but it was right around the corner anyway. I imagine that if you take it when you're in your 30's or early 40's it feels much rougher. Vaginal atrophy hasn't been a problem so far. As far as hair goes, I was bald 2 years ago when I started taking it and now I have a full head of hair again, so no complaints in that department for me
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Hi Carla
Thanks for the feedback- I just turned 50 this August so I am on that same premenopause, irregular cycle thing too. In light of that it is also my hope that those changes won't feel as abrupt as they might to someone who still in the prime of their 'cycling years'.
No if I can just find someone to speak on the herceptin SEPARATE from chemo...
I know it may seem like a crazy hunt, but I guess it's just another way of keeping myself crazy!
Sue- loved your story about your time with the grand kids, what a gift! Probably a lot of healing in there too. Thanks for sharing.
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Reporting in: Had an appointment with oncologist yesterday and raised the question about whether he plans to continue the perjeta indefinitely or discontinue - a subject we have all been talking about. His view is that in my case, he would like to continue indefinitely. He reminded me that I have already been on Herceptin alone and progressed on it (I forgot). Also that I have had numerous recurrences and that this combo has been exceptionally good for me. So he's on the "If it ain't broke...." side.
I also asked him about new drugs for us Hersies in the pipeline, and he told me that my cancer center is going to participate in the new year in trials of something called "Margetuximab" (sp?) which seems to be another offspring of Herceptin, like TDM-1 and perjeta. I haven't heard of this, and so will be looking it up, and have asked Dr. Opp to dig up some info for me (us).
Finally, acupuncture seems to be working extremely well re: my resolve to attack long term anxiety syndrome. It feels like a game changer - yippee! 'Course I am in a pretty good place cancer-wise just now, so if things change we will see if I can use any of the new tools that I'm presumably learning.
Hope everyone is doing well, best regards to everyone. SUE
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Thank you for this exciting information Sueopp. I love to hear about any new meds coming to give us more options. Your oncologist sounds great. So glad they will be participating. I looked up the clinical trial of margetuximab and it is offered close to me too.
This diagnosis is so new & raw in my mind. I need to hear about ANY new options for us to have.
Oh and my comment on DCIS is, 5 years ago I was ONLY DCIS and now stage 4.😡 wish I would of been offered Mastectomy then like all the celebrities get done. Sorry, I know you cant go back in time, I just can not wait to find a med to make me stable or NED. Please let THP work!
Love & Prayers to all of you Awesome Ladies❤️
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BUMP! Just check'n in, hope everyone is doing fine
Husband and I are getting ready to leave for a break - one week in Pittsburgh! Why Pittsburgh you might ask? Absolutely beautiful city, Heinz Hall and Pittsburgh Symphony Orchestra, one of the last five "Glass Houses" in America, an aviary (!), two funiculas, ethnic restaurants galore, a great natural history museum .... Taking books and cookies.
What's up with you, girls? Hope everyone is feeling OK - love to all. SUE
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Hello - Sue, your upcoming trip to Pittsburgh sounds lovely. So glad you are getting away and looking so forward to going.
Last week my blood work showed lower than my usual low sodium so I am scheduled for a CT scan on the 9th. UGG. My intuition tells me there isn't any progression but I can't help dreading the results.
Does anyone else feel extra lousy (fatigue, body pain) about the 4th and 5th day after receiving Perjeta/Herceptin? My side effects seem to be getting worse with each treatment.
Thinking of you all - Karen
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