HERCEPTIN and/or PERJETA Threads
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Ronnie, big congrats on your scan results!
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Congratulations Josalive and RonnieKay. I'm so happy for you both. Hope you have a wonderful celebration!
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Jos, RonnieKay: why would your oncologist take you off Perjeta? I've been on both since February 2014. The SEs seem pretty minimal. I have a little neuropathy that I got during the initial period of Taxotere + H/P and my EF bounces between 50 and 60 (but was in the 50s before any treatment). The worst thing is general aches and pains and tiredness but I just found out my iron is quite low as is my red blood count and that should be easily treatable. Is there evidence that long term Perjeta use is harmful? Isn't the evidence pretty strong that the combo of H&P boosts survival significantly? Are there research reports out there that indicate after x time on Perjeta one should be taken off it? Just very curious as I've had the best response I could wish for but my Onc seemed surprised when I mentioned this.
Glad to hear you're both doing so well.
Miche
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Miche -
I think all your points are exactly right. The cleopatra study showed that Perjeta combined with Herceptin had much better results than Herceptin alone. The concern that my oncologist has is that nobody understands the side effects of being on it long term since it's such a new drug. She actually recommended I come off of it after 6 months. I had a second opinion (with a highly respected doctor in the research field) and she recommended the same thing. But it still didn't make sense to me because of all the points you make and so I pushed back.
As long as I am feeling ok and we know it is effective I want to keep having it. The second doctor said 'you can always go back on it if you have progression'. That is not what I wanted to hear.... I don't want to have progression! I am not a doctor but Herceptin and Perjeta are both monoclonal antibodies so maybe their long term side effects would be similar?? I've heard of people being on Herceptin for 10+ years. I'm just concerned about taking away something that is working well. After my year is up I might push back again unless there is more data that proves one way or another. All the side effects you mention do seem manageable. It's good to know you've been on it for 18 months with few side effects and most importantly great results!
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I just wanted to drop in for a second to say that i've been on Perjeta since June of 2014, and I have no complaints with either Herceptin or Perjeta as far as any significant kind of side effects. My oncologist just automatically started me on it along with Herceptin. That old adage that says "if it ain't broke, don't fix it" works for me, and I plan on staying on it until there's some research that says I shouldn't. Ann
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So very happy for you Ronnie! That is great news!
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yay Ronnie! So happy for you! Interesting conversation re: perjeta. I have been on h and p since October 17, 2012. Approaching 3 yr anniversary! I would say se's are minimal, but cumulative. Mental part is hardest for me. Best of luck to all
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Kjones13: Could you elaborate on the "cumulative" side effects? And the mental part? Do you think H&P affects your mental capacity? For me the mental part would be there no matter what because I have METASTATIC BC and that is certainly a BAD TRIP (yeah, I came of age in Eugene OR in the 70s). Just having to go in every 3 weeks is a drag and does a trip on me. Oh yeah, and then there are the frequent Echos and hmm, am I due for more scans? I don't think my SEs have worsened over the last 8 months or so. After the chemo effects wore off I've stayed with the same amount of neuropathy and frequent but not terrible joint aches and leg cramps.
I too know of people who have been on Herceptin for a decade or more but Perjeta is new but the same type of drug--or is it the same?
Teakie88--my Onc would agree with yours--if it ain't broke....this combo works better so why tempt fate and wait for progression?
Jos--I too don't want progression--NED is my best friend! Tumors were in my liver and I hope H&P and my healthy lifestyle doesn't let cancer rear it's ugly head anywhere else!
Any other thoughts on Perjeta? Do the potential (Known? Unknown?) side effects outweigh the benefit? There is a proven benefit (long term? short term?), isn't there? I don't now want to be worrying about Perjeta doing long term damage without real benefit! Yikes, so much!!!
Miche
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Congrats Ronnie, so excited for you. I hope more of us can join you
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Thanks everyone...for sharing in my good news & huge relief. So thankful for something other than chemo to keep us around...for a long time!
So...Miche, I believe you have faith in your onc, which, ultimately, may be the most important component of treating/living with this disease. A good friend said we pay them good money to keep us alive...I love that! Hopefully, they know best about our individual case, ie...tumor makeup, previous dx & tx (mets is my #3), physical condition, etc....and we all know, with or without mbc, every body is different.
I have been on h/p since Jan 2013...right behind Kjones...so 30 months. I was on Navelbine for 22 of those months. At the time chemo was dropped (10/14), perjeta was the next one on the chopping block, thinking one year longer (which would've been 3 months from now), but my onc & I both decided now was good (I dreaded the next 5 tx). My echoes/blood/TM's & liver enzymes have been very good for a very long time (my mental state has been wavering lately, but I'm working on that se of mbc!). Josalive's onc & mine seem to be on the exact same page...relating the very same criteria to me that she heard and shared here. That's very reassuring to me, and he continually tells me he has other tricks up his sleeve :-). When I asked what other oncs thought, regarding dropping perjeta, he was thoroughly honest, saying it's probably 50/50...so I can see that there is no clear answer. I was told chemo for life (5 months was mentioned as "life" by my previous onc), but my new onc was confident it could be dropped...9 mo later, I'm trusting him! I understand, "if it's not broken, don't fix it," but I DO have increasing ses, after 30 months. I was on herceptin for a year in 09 w/first dx & even w/femara, had no ses. Now I'm getting much worse foot/finger neuropathy, eyes & nose sensitivities & fatigue...yes, I'm 5 years older & yes, I could live with these ses to LIVE...and when he says I can add it back if I have progression, I panic just a little, but I'm trusting him. I'm living a healthy life, I rest (but I stay up too late on bc.org), I try to keep stress down (thank you counseling & little white/green pill), and I hope & pray a lot. I don't know if this is the right thing to do, but I'm not the onc...I'm paying him to keep me alive..and I trust him :-). I wish all of us peace, confidence, and mostly...healing.
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Ronnie, thank you for your thoughtful answer to my question. It's very helpful to hear what other people go through and the process with their SEs and with their oncologist. If the Perjeta is causing your SEs I get it. Will be interesting to hear if you feel better, I suspect you will if you've been dreading the infusions. There is also the age thing
In your 30s and 40s you just feel fine and 5 years is nothing then in your 50s you start to feel age catching up. My DH also gets hand and leg cramps since we moved to Maine--so are my cramping muscles SEs or moving to Maine? "Age, Michele, it's just age" said my friend the pediatric oncologist who himself just went through chemo a few months ago. He also agreed, so much of cancer care is arbitrary and given with a huge dose of hope. But those of us who are getting older can't forget the side effects of that!I'm just over a year and a half into mets dx and seem to be one of the many several who went from weakly ER+ & HER2+ in first dx to metastatic HER2+ in spite of a mastectomy and great optimism about first tx. I do have faith in my Onc but not complete faith. The first one was not concerned at my HER2+ status and suggested tamoxifin for the 5% ER and then just 18 months later I had liver mets and my new Onc who was horrified that my original Onc hadn't treated the HER2+ with Herceptin even though only 4%. HER2+ is sneaky and aggressive. I trust my Onc but think we all need to stay informed. I think it's a shame that hospitals don't keep track of us in a national database that would show for example how long people were on Perjeta and what their progression free survival and survival was. No one would set up a study to take people off Perjeta and keep others on and see how long they lived but gee, couldn't they keep track of treatments and people and quality of life and survival? Yes there are infinite variables but still we find things that work.
Well, here's to finding those things that work for metastatic breast cancer in all its myriad variations! And here's to everyone on the H&P thread having good results and feeling great and having a great August! Hope those who go off Perjeta stay on this thread.
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Michele, I am having leg cramps while on THP and I am in my 40"s. I've only had 2 treatments and they just started.
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Did you just start Taxotere? It's horrid stuff. A lot of the side effects from hard core taxol chemo dissipate over time. After 6 rounds of THP I changed to just H&P and I slowly got better and my eyebrows came back and my nails got a little better then I seemed to reach a stable place which I guess are the SEs from H&P. I had to wait for the effects of Taxotere to wear off though before I could sort out the effects from H&P. That took months!. I'm much stronger and feel much better than a year ago after Taxotere was out of my life (not that I don't have a fondness for it since I got to NED).
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Josalinve and RonnieKay - Happy dancing for your good news! May it continue for a very, very long time!
Macy - I join the others in saying that I hope you keep posting here. I want to know how you are doing on the new chemo, and this seems to be the only thread I can keep up with lately, and only barely.
Wishing you the best.0 -
michethevanquisher--the side effects like neuropathy, runny nose, but especially fatigue and nausea seem to keep increasing. Sounds silly when taxanes are so much worse...or any chemo really. So I try not to complain. my mental capacity has for sure been impacted by all this crap, but what I meant in my earlier post was regarding the depression, anxiety, etc. a constant roller coaster for me. Bless my family's heart! Haha!
My onc is of the 50%--if it ain't broke don't fix it. Trusting him
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I hope all you ladies had a good weekend.
I am noting about day 12 post Taxotere,Herceptin,Prejeta, I get very dry eyes and a rash where my lashes are. I do not think it is folociits. It goes away but it is irritating. i use natural tears during this time and it helps.
Anyone get this from THP?
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My eyeballs r fine byt holy cow my mouth feels like all my teeth have been pulled out.
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Ack! Are you usng biotin Tx? Get yourself some malox and liquid benadryl Mix in equal parts and swish and spit. Do not swallow since you may want use it often.
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Wow, Freygea, excellent tip! I wish I had known it when I was on taxoterrible. Where did you learn it? Hope everyone is doing well - SUE
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Former Oncology Nurse here sspecizlized in hematology. I went on to do hospice . "Retired" once my husband opened his own business about 10 years ago.
I keep my mind a blank slate when is comes to all this because I want no preconceived notions to clutter up anything I may learn in my new journey ..hope that makes sense.
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I do have some Biotin but haven't used it yet. MD Anderson gave me some compounded concoction and some Carafate. I think I started using them too late as last month my mouth was not this bad. How are your eyeballs?
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Dry . LOL. The natural tears help.
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I had lasik awhile ago and used Systane eye drops recommended by the surgeon. They were the best. They are a thicker eye drop but worked really well.
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My eye doc recommended taking fish oil tablets for my dry eyes, but I never got around to trying it because they improved after I finished the Taxotere. Salt water several times a day also helps with the mouth sores.
The malox and benadryl concoction is a new one...will have to file that info away for future reference!
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Bah I used to take fish oil before this process. I am going to dig them out. TY
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Just an FYI that I'm not leaving...you are some of my favorite people :-). I see my fellow on Wed & get the full scan report (as the nurse just gave me "the great news"...as she called it!).
Oh yes...dry eyes (2 thumbs up for systane), but hold your horses...7 weeks after perjeta, they are amazingly better. I've worn mascara 3 times & no irritation. That was totally impossible for me before. The interesting part is..ses are rapidly improving...RAPIDLY....which to me means this drug goes in, does the job, and goes away. That's pretty amazing, and I guess the brilliant part of biologics! So, where on chemo, you wonder if cells will ever recover (like my disrupted brain cells), I am pretty happy/confident that these drugs can be less permanent in ses...but hopefully permanent in keeping us alive!
On liver mets thread, Ella has moved to immunotherapy...I'm keeping a watchful eye, wishing her the best & hoping she's a trailblazer for something wonderful in hopes of a cure...like you Miche!!!! Love to all!!
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Hi Ladies
Ronnie so glad your doing well. I just had Rd #2 THP yesterday. I got premeds so feeling ok just tired today. Still very stressed out about Stage 4 DX. I have internal Mammary, mediastinal &
Supraclavicular lymph node mets( so many they didn't count them) & everything I read about this tells me a Poor prognosis. I haven't found many women with these same mets. I need to be here for my children!
I keep telling myself it is not in my organs so I should be glad, just want to be NED or stable!!😓
I don't want it to invade my esophagus or trachea which are two of the places it is sitting on. Sorry to vent, I figure you Ladies understand.
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I had my second treatment on the 6th. Over the past week a rash has developed on my arms, some areas of my legs, and all over my face even on my inner eyelid. I tried to treat it with hydocotizone cream but finally called my MO who called in a antibiotic. It is looking a little better but I look like a mess! Anyone else deal with this issue?
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2ndtimeforme:
I found out that my cancer had metastacized because I happened to feel my neck one day and found the lump in my supraclavicular lymph node. I have been on Herceptin and Perjeta for just a little over a year and am currently NED. I have the same receptor status as you, and I am not aware that just because cancer was found in that lymph node that your prognosis is poor. My oncologist never ever said anything like that to me, so take heart that with all the treatments out there for us, you can do this.and with a good QOL. Best to all. Ann
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Babyruth - yes, I had an acne-like rash all over the top half of my body with my first round with Taxotere, and then again with the 4th round, but not as severe. Minocycline helped clear it up. Now I still get the occasional spot, but nothing like before. I'm sorry you are dealing with the rash along with everything else. I think for me it was one of the worst SEs.
Ronnie! Great news about your eyes! There is hope!
2ndtime - have you had any scans since starting Herceptin/Perjeta/Taxotere? I don't know anything about prognosis for supraclaviclar nodes, but I think what matters is how well the mets respond to treatment, regardless of location. Have you had any indication that it is working?
You are all in my thoughts today. This is the 1 yr anniversary of my stage IV Dx. A few weeks later I googled something silly like "How do people live with terminal illness?" and that is how I found BCO. I'm so glad I did!
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