HERCEPTIN and/or PERJETA Threads
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Henrietta405 and gonegirl,
Thanks for the responses, makes me feel a lot better about my EFR drop. I do not want to have to ever stop H & P if it continues to work. Ya know.
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Orawan - I have stopped Herceptin in the past. I believe I was off of it for 6 months. I did not have any progression and yes, I did start it again.
I am interested in all of the feedback on the Echo's …. I haven't had one in too long but am scheduled for one in a few weeks. My oncologist doesn't seem to enforce them - I had to let her know that I thought I needed one (she agreed.)
I am still feeling the effects of that mistakenly given "loading dose" of Herceptin and it was almost 3 weeks ago... short of breath when I try to run for very long, and having abdominal muscle spasms.
Hope everyone has a good week!
XO
Andrea
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On the topic of Echo’s, my original EF was 60-65%, all others (every 3 months since Jan 2017) have been in the 54-58% range. My cardiologist recently changed me to a 6 month schedule due to EF stability, lack of symptoms and overall heart health (I walk a lot). As I understand it, a 10% drop is considered significant but the error rate for the Echo is +/-5%, so that is a factor too.
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Hi
Anyone had IHQ Her2++ ?? After FISH Her2+++?
My mum had a biopsy of a met under the skin last week, the results are er+ pr- and her2++ so oncologist is going to do FISH now.
Her primary breast cancer was er- pr+ her2 -
Pleural mets in 11/2014 were er+ pr- her2-
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Dear H&P Sisters,
I was first diagnosed with Breast Cancer (stage 3b) her2nu in 2009, (age 43) had a double mastectomy, did A/C and a year of herceptin along with 5 years of tamoxifen.. After my 5 year mark of taking tamoxifen, I stopped taking it (per okay with my oncologist). - I felt great, and was living a very healthy lifestyle, so never in a million years did I think my cancer would come back. In less then a year, my BC came back- stage IV- it showed up in lymph nodes under my right arm, and in the scapula bone in my back (weird right?) I was having back pain, but I work retail and am on my feet a-lot so I just dismissed it to typical middle age over worked back pain-, so it was only after going to the gym, and taking a shower and finding a golf size lump in my arm pit- that I went immediately to my oncologist. ANYWAY- GOOD NEWS after 3 years of surgery and treatment (taxotere, carboplaten, and then continuation of herceptin and perjeta (every 21 days) and orally daily arimedex ) my last few scans show no signs of cancer. The doctor actually used the word remission instead of NED , he said I have a few choices- I can either stop the herceptin and perjeta and "see" if the arimedex is enough to keep the cancer away (continuing with scans to keep in check) - or I can keep on keeping on with the current treatment. I have manageable side effects from the H&P (itching and ear ringing being the worse, some fatigue which I manage, thin hair (no eyebrows which I miss) and of course numbness in hands and feet, but still not debilitating, my heart echos show no damage...my husband wants me to continue on the same course , but part of me wants to get back to the old me (I think she is still there somewhere) and I like to think the arimedex is enough- I don't know truly what to do- and I am a bit flabbergasted that the doctor has left such a life and death decision up to me- Has anyone been faced with such a decision ? I need guidance - thank you all for any words of wisdom that you can offer this 52 year old, mother of 3 who babies are now all are in college. My first prayer when I was diagnosed in 2009 was to see my kids graduate High School, now I would love to see them living happy productive lives, graduate college, find the love of their lives (hopefully) and one day( maybe) be a grandma !
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cgull: i'm not sure how stopping the herceptin and perjeta would take you back to the old me. the side effects sounds minimal.
i was diagnosed her2+ stage iv de novo in 2012 so it's been almost 7 years, thank god. i have had a few flare ups over the years and had to switch treatments a few times. i started with taxol and herceptin then was just on herceptin. about 18 months later, the cancer was back on the liver at 4cm. i then switched to kadcyla and have been good for a while. i did have a spot on my rib and had targeted radiation on that. recently that spot lit up a bit but really had to switch to herceptin and perjeta because the kadcycla is a targeted chemo and was affecting my bone marrow, so my platelets were no longer recovering. i would love to stop treatment all together, but have seen that stuff pops up here and there. frankly, i am very, very lucky that the stuff i deal with responds to treatment.
is the cancer you deal with her2+ and er+. her2+ tends to be much more aggressive than er+ cancer.
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interesting to read some of your updates about nausea. I haven't had any real nausea from H&P until this round (almost three years into it). Maybe it was just a lot of rich food lately, but I'm definitely feeling it this time around. Not bad, just sort of on the edge and making me not real hungry. Maybe it's a sign to get back to healthier eating and more exercise. I've kind of let things slide, so I best kick it back into gear.
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Cgull - You sound a lot like me. I am a 51 year old (almost 52) mother of four who was originally diagnosed when I was 41... Stage I. NOT diagnosed Her2+ then. Did lumpectomy and radiation, etc. Cancer came back Stage IV when I was 44. All up and down spine, pelvis, ribs, a few small spots on liver. I am a runner, and thought the pain was from some sort of injury. (stupid, but my oncologist wasn't any help) I had X Rays and of course the cancer didn't show up there... and I actually DID have a minor legitimate lower back injury, so did PT, etc. Anyway, finally had MRI and discovered cancer. Did radiation, wore a back brace, 4 months of chemo including Herceptin and Perjeta (because this time it WAS diagnosed Her2+) Lupron shots. Immediately went into menopause. Didn't continue with the AI's because the side effects were so bad for me, but did continue H&P every 3 weeks. My kids were also in middle school and high school and my goal was also to see them graduate.... we now have four in college and NOW my goal is to see them graduate from college (for one that's going to be about 10 years..... I hope I can stick around that long...) and start their lives. I would also love to be a grandma!
I was NED after about 18 months and have remained that way ever since, so almost 5 years of NED. I have cut Perjeta out, and don't go as often for my Herceptin infusions....instead of every 3 weeks I go once a month, and I usually skip 2-3 months per year.... so it's sort of random. My oncologist fully supports that choice. At one point I took a Herceptin "vacation" and didn't have infusions for about 6 mo, although I did continue with Xgeva shots. I used to get those every 6 weeks and am now down to once a quarter.
Going more sporadically really helps me to manage the side effects that I do have, which are minimal. I don't feel like the "old me" but I do feel like I am in control and am not constantly at the hospital. I am very active and am back to running, hiking, biking, skiing, etc.
There are several women on this site who have had 5-6 years of H&P and have been NED, and have given it up completely at the advice of their doctors. Perhaps some of them will chime in.... I don't think any of them have had a relapse, so to speak. I would love to be able to do that, but I feel like what I am doing is manageable and the infusions that I do get are like my security blanket. My oncologist has said that I cannot give up Xgeva- that the shot is the single most important thing she gives me.
It's a difficult decision. You might consider just cutting back on the infusions to see how that makes you feel.
Feel free to PM me if you want to chat some more! Good luck and congratulations on NED!
Andrea
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Cgull,
We all have to do what we feel is right for us and our families. Ya know. We all deal with this crap in our own ways, the best we know how.
That being said, me and my MO are afraid to ever stop the H & P. I am only 15 months in, but I just feel that I can deal with the SE’s if it’s keeping me alive and around for my family. Plus, I think the AI’s SE’s are a lot worse than H & P’s. Who knows though, I might feel differently 5 years down the road.
Take care all,
Jenny 😘
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Well ladies, just got back from my MO to review scan results and I'm off H&P. Really bummed that I only got a few months on it when so many women get years. My liver has completely resolved, my skeleton looks fantastic and even better than last time, but lymph nodes in axilla, above clavicle and multiple ones in abdomen all show new metabolic activity and the primary mass is growing again. Have biopsy scheduled for tomorrow morning to verify lymph nodes are cancerous and that there's not something else going on. Bleh.
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What does AI mean? I tried googling it and I don't think Artificial Insemination pertains to our discussion! lol!! Is it short for arimedex? Sorry, and does MO mean main oncologist? I am sorry to be such a ditz! lol!
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Hi Lori
Saw your post and wanted to say that there appears to be some hopeful response from your scan. There doesn’t seem to be any pattern with regard to those who are on HP a short or long time. It is mind boggling! Hope you feel better when a new plan begins. I’m thinking of you and am sure you will come through this.
Liz x
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Thanks Liz,
cgull - AI refers to aromatase inhibitors and MO is medical oncologist
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Hi there,
I too am on Herceptin and Perjeta (Arimidex and Zometa). I have a number of SE, the worst being muscle cramping and the scratching...... I am suffering big time particularly in the evening with itching on my left arm, head and neck. I am on the HP protocol since March 2015 but have noticed in the last few months that the itching is getting worse. It is really getting to me and nothing seems to help, I have been on antihistamine, tried Eurax cream and only find a little bit of comfort from freeze packs that I put on my arm to help relieve the itch. My Oncologist has suggested that I drop the Perjeta! I am seriously thinking about this as I have heard from a number of people who did drop the Perjeta and found the itching side effect to have lapsed.
I too got a scare a few weeks ago after a routine scan showed up a 6mm anomaly on my liver, they wanted to investigate further due to my history, the wait time was just under three weeks before an MRI scan of my liver turned out to be clear. That wait time was excruciating. My brother in law (Medical Consultant) explained to me that the images are so good that they are picking up anything and everything. Anyway thank God all is stable and long may it continue. I am 4 years in March 2019 on treatment and other then itching and cramping I am feeling GREAT!!
Judo.
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I itch all the time, especially my back where I can't reach it of course. My head itches but I think that's the hair growing back (I hope).
Can you stay on H&P indefinitly? I mean, as long as it's working? My tumor markers are down to 17 (from 306) so it's working.
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FM508, I too experienced the itch! Especially on my forearms and still have scars to prove it. Amazing itch, isn't it? My oncologist referred me to the top doc in the system for allergies. Fascinating woman who was determined to get to the cause of the itch. Her final recommendation was to drop the perjeta because she determined it was causing neuropathic itch. My oncologist agreed and I did too, so we dropped it. I wasn't even close to NED. Itch stopped completely within a week and a year later I am considered NED. I consider myself very lucky and realize we are all different. But I wanted you to know my path. Good luck
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We decided to keep me on Herceptin and Perjeta since it's been working so well on my mets, it's just not working on my IBC which is back with a vengeance (and confirmed still strongly HER2+ with new biopsies). So I'm back on Taxol now too, and if Taxol can shrink it will probably follow with radiation to see if we can get it to stand down a bit longer this time. I started having a severe reaction to Taxol after a few months last time, so I'm a bit nervous about doing it again, but it surprised everyone with how well it worked last time and the hope is that I haven't built up resistance to it. Thankfully I didn't have to do a load dose of H&P despite my short break because a load dose of H&P on top of a 3 week dose of Taxol would be brutal. Still coasting on the pre-meds, I guess the full effect of being back on chemo will hit me in another day or so.
Yes that incessant itching!! Worst is my upper right arm and inside the elbow, but recently started on my back too. There are tiny rash-like bumps, a few on my forehead too, and I've scratched my arms till I'm bleeding several times. I've been using an anti-itch cream when it gets really bad but otherwise just try to deal with it. Just when the itching was finally starting to die down after being off H&P, now I'm back on it haha!! Not ready to try dropping Perjeta with the IBC running wild again, need to hit that stubborn beast with all we can.
Judo I have terrible problems with cramping too, debilitating. I get them in my hands, feet, my achilles tendon, along the side of my shins, and the worst is the intercostal spasms in my ribs. Haven't found anything to help with them yet, not even muscle relaxers. I think they are neuropathy-related.
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I don't get on here too much due to crazy schedule. Last time I posted, it was about shortness of breath after Tx. Thanks to LoriCA and gonegirl for your replies.
LoriCA: yes, I get quarterly echos. No problem there. The cardiotoxicity is a little scary given that there is a Hx of cardiac problems in my family – but only in old age. And frankly, I will be darn lucky to get there.
Gonegirl: what pre-meds? I don't get any pre-meds. I hope not steroids.
To those discussing itching - I itch a lot! I also get skin breakouts sometimes. Looks like a bad case of acne. Can be anywhere on my body. Sometimes they erupt and bleed. yuck. Sometimes I have a patch of scaliness.
Cramping - yes! bad in my feet, legs, back and surgical site. Heat and movement help a little.
In other news, my recent scan was characterized as stable BUT they saw something in my kidney for the first time. It is small and this radiologist thinks it was already there before. It was never reported before. He also thinks it is a cyst rather than a tumor. This does not give me much confidence given that they originally thought my liver lesions were cysts rather than tumors.
My doc is willing to let me stay on Herceptin and Perjeta for the time being but at some point my health plan will quit paying for Perjeta. I know that some people have posted about going off one or the other. Anyone had insurance quit paying - especially for Perjeta while leaving you on Herceptin? I'd feel better if there were studies on the consequences of such actions! They took me off everything for 6 months with disastrous results. That's one way to prove those "cysts" in my liver were not cysts!
{cross posting to the liver mets group}
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cgull: what did you decide about treatment? I am in much the same boat in that I am deathly (pun) afraid of making a change and it not working. If it ain't broke, I don't want to fix it. I think we all know that sometimes if we start to slide, it is difficult or impossible to get back to good. I think that there is a good change that Herceptin alone would work for me. But the down side of being wrong might mean being dead ...which I am hoping to avoid for a while. Per your question above, AI is aromatase inhibitor.
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Hi Lumpie, No decision yet, I do see my oncologist in 3 weeks (I see him every other infusion) - and will pose the "if it was your wife, what would you tell her to do"- I have talked to several friends that are in the medical field, and they seem to agree with my husband in the "why fix it if it ain't broke" category, in other words- stay on what is working...the doc hasn't given me the options of skipping treatments or taking breaks, of even dropping the perjeta and staying on the hercpetin- so I plan on discussing these with him- sigh.....I realize everyone is different, and cancer is a crap shoot with treatment- just wish their was more data and positive answers.
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Lumpie: Why would the insurance stop paying for Perjeta? Weird.
I get pre meds because I started having post-infusion reactions to Kadcyla (chills, increased heart rate, etc). So they slowed down the infusion rate and started giving me a pre med mix of Pepcid, Benadryl, and Tylenol.
Now on Herceptin/Perjeta, I get Pepcid, Benadryl, and Emend for possible nausea. I was on Kadcyla so long I apparently started having an allergic reaction.
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I get Tylenol and Benadryl before every infustion of Herceptin and Perjeta.
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cgull: Good luck with whatever you decide. Let us know!
gonegirl: thanks for the FYI re your pre-meds. I haven't been on this combo that long but I am occasionally fearful that I might be developing an allergy. Or it my be wacky drug side effects (hard to say what the difference is). Or my doc thought it might be "autoimmune."
For those who get pre-med: I understand the benedryl but do you know the rationale for the Tylenol? Do you get aches and pains? (I've never found Tylenol to be very effective, but that's just me.)
gonegirl: As far as why my insurance might not want to pay for Perjeta .... 'cause it's expensive? I haven't been given another rationale.
I hope this isn't too gauche... but... I found out within the last week or so the total cost of my therapy. I assume that this is pretty similar for all of us. I knew it was expensive but I am fortunate to have good coverage and had not added up every component from every bill and gotten a big total. I got specific numbers. I was really horrified. Especially when hoping this therapy continues to work longer term, it has raised all sorts of questions - both existential and practical - which I am sure I can never entirely resolve. Has anyone else struggled with this? Can you share any .... enlightenment?
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Try taking Ibuprofin for the itching, sounds strange but it worked for me, it's the Perjeta, we have dropped the perjeta from my plan and the itching is gone...
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Lumpie: I know how expensive my treatments are and it ticks me off. I advocate via Twitter for lower drug prices. Few years ago, I wrote a piece on the subject of artificially inflated drug prices. It's inhumane.
Living and Dying Might Depend on Cost
http://uppitycancerpatient.blogspot.com/2016/12/li...
I personally don't feel a need to die to save anyone money. Instead, drug companies need to drop the price of drugs to reasonable levels. Insulin is an excellent example of price gouging.
Insulin Prices Have More Than Doubled in the Last 6 Years — and Now People Are Dying Because They Can't Afford the Drug
http://time.com/money/5394266/insulin-price-increa...
People are dying due to insane price gouging and something needs to be done.
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gonegirl: thanks for the link to your blog post! It is excellent. I couldn't agree more. We are all glad that there are new drugs being developed. We need those. But the price gauging which bankrupts us and our families or sends us to an early grave - without available treatment - are a service to no one. I am aware of the pricing issues with epinephrine and insulin. Unconscionable. Just for comparison purposes..... the last time I checked, the NHS in the UK had a $100K per year of life formula they used for evaluating drug costs. At the prices being rung up for me, it's not even close. And that is very scary.
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Hi everyone! I don’t post much, but read often and try to stay in the loop. I wanted to ask if anyones MO has stopped H & P because of continuous EF drop on their Echos? Mine did this past week and scheduled for me to see a Cardiologist and get further evaluated. I have been on H & P since 8/17 and my EF was usually 65%-61%, but in Oct mine dropped to 51% and my last one was 48%. I know they say that once off of them, the heart recovers, it just worries me on multiple levels.
Happy New Year to all!!!!
Jenny
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Mine didn’t drop as much but if it drops by 10 points or more, no H&P. I think they give it a few weeks and do another echo. After that, your EF recovers andyou’re either back on it or might need cardio meds.
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I know at least one person who dropped and took a little break and then went back on with no progression or other problems.
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My Onc said I would be going off H&P at the one year mark, not sure why. That scares me because H&P is working and it's like taking my safety net away.
I'm getting a new Onc, meet him on Thursday, everybody says he's great and I'll love him. This will be my 3rd Doc, I have had 2 retire on me, I guess I'm too much! ha!
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