HERCEPTIN and/or PERJETA Threads
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Special K on the triple positive board talked about a vitamin that helps with neuropathy. I know L glutamine is one I took, but she mentioned something similar that helps, sorry I can't think of the name of it. I am on HP for a year since diagnosis (November 2019), I wonder if he will keep me on something after that, I guess time will tell. I had a complete response to TCHP and am going through radiation now. Best wishes to everyone.
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Hello all: Has anyone had any experience going on Herceptin and Perjeta after progressing on Ibrance and Letrozole? I'm worried about this being my second line of treatment. MY new lymph node met is now ER+HER-. Did anyone else here change in that way?
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Agreed about taking too many magnesium supplements. I prefer it in food and rubbing on my muscles. I am sorry that you have tried all of those suggestions and it did not work. Hopefully they can figure out a way to calm that down for you.
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Dear Lori, thanks... yes, I completely understand what you say about pathology but strange that doctors say that in IBC cases/reports they see lymphatic clogging in the skin and other things, and here nothing like that. I mean I still believe it is IBC but so many are saying it is not (also those doctors who saw redness), so I start to think I caught this phrase from one MO and got stuck on it... in the end whatever it is it is stage IV... but you know, I still believe we can control stage IV (with some luck, of course), maybe even cure it. I know how medical community is skeptical about "the cure" (and they have their arguments) but everything started with crazy people who believed in something, didn't it? I want to sincerely apologize to everyone who might think I am just another one who lost touch with reality and talks about false hopes but people, Lori, everyone... we can do it. Why do I talk about this? I don't know... there are days when I think that "the world is over", and there are others when I think "if not we, if not you, then who?". This is that day. I am a life, people lover, and a fighter who never gives up. "You must face the reality" are words I heard too many times in my short life (my life was never easy, I had to fight for every bit of it) but I confronted these words and in many cases miracles happened. So yes, I say we can do it, we are too strong, too passionate, too young (yes, I know many people who are 30 and much older than others who are 50-60-70 in these forums), and in the end... this world needs us. I have not seen anyone so skeptical as the oncology medical field is. They must start thinking outside of the box a bit and start believing they can do more than they were taught in their medical schools. Some of them already started but most of them still only "do their daily job". Uhh, my eyes are in tears but heart full of hope for everyone who goes through this crazy challenge. We can do it!
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I too have severe muscle spasms and cramps. I get them in my Achilles’ tendon, stomach, ribs mostly on the surgical side but have had on both and my back. I too take electrolytes power packs with all the recommended doses of b vitamins, magnesium, and every other vitamin you can think of including vitamin D and calcium. At my oncologist advise I started drinking quanine before bed. Taking flexiril but had to stop because I have to drive and work. My dr prescribed Tizanidine which doesn’t make me drowsy and I felt did reduce the occurrence but not stop them. On it I went from 6-10 spasm through out the day to 2-5. They are seriously painful and attack when driving, sleeping, walking, exercising, even trying to lie down flat on my back trying gentle healing stretches. Well just lying flat on my back triggers a spasm instantly. I don’t know what else to do. People advise walk, stretch, exercise more but I do and they all trigger the spasms. I completed herceptin and perjeta 2 months ago. I hope someone reading has some advise that works.
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Elenas401 -I have been on Herceptin and NED for almost 7 years, but it was my first treatment....I didn't start after progressing on something else. It's interesting - I actually stopped Perjeta fairly into the whole process because of some of the SE's, and my oncologist isn't convinced it makes that much of a difference. But I do have been experiencing more and more feet and leg cramps lately.... and I also think it's neuropathy related. My entire foot will cramp so badly it curves into itself, and my calves will go into a spasm and stay there for minutes. I am also well hydrated, take magnesium, sports drinks, etc.... so I don't know what it is. Mine has been getting worse just in the last 3-4 months. I also get the spasms in my torso, but not as often.
XO
Andi
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About the muscle cramps, my daughter was a college athlete, when they got cramps they drank pickle juice and it almost immediatly worked. Two swallows usually and they were gone. Just fyi
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Hello all,
Dear Mets sisters I hope you are enjoying happy and stable days.
Oh I so would like your input on my current situation especially if you have been through something similar.
Disappointing results on my CT scan last week.
A bit of history. I have a large mediastinum sternal mass and several ribs involved. I also have a small plural effusion. I had significant progression in dec and was switched from ibrance and letrozole to taxol 12 treatments and herceptin and perjeta and tamoxifen. I finished taxol in April. My scan in March was AMAZING everything shrinking or stable. So to my point this is my first scan since being on herceptin and perjeta alone and I now have slight progression in the sternal soft tissue mass and also the pleural effusion. The report does say SLIGHT but..... I am no longer STABLE . I have an appointment on Friday to go over results with my MO. Do u think this means a treatment change again? Has this happened to anyone else? I am so disappointed and nervous. I am feeling so well I thought this was going to be a good report.
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Hopefulgirl I'm so sorry to hear about your progression. After an amazing response to my initial round of taxol I haven't been able to stay stable on just H&P either. I had progression two months after finishing my first round of taxol. H&P works well on my bones and liver but hasn't stopped it from spreading elsewhere even though new biopsies confirm it is still strongly HER2+. As to whether slight progression means a treatment change, it depends on your oncologist. Some oncologists change treatment at the first sign of progression (and some patients insist on it). Others, like mine, monitor the progression and won't change treatment until it starts affecting quality of life or impacting health. My oncologist doesn't want to burn through all of my treatment options too quickly so we've been carefully balancing my symptoms vs treatments. For the past year I've stayed on H&P while adding other treatments (chemo, rads) whenever progression affects my quality of life. I'm sure I'll be moving on to Kadcyla soon, but we've been able to postpone it for at least a year while maintaining a good quality of life. He says that as long as I'm otherwise healthy, feel good, and can live an active life, why rush to put me on a treatment that will make me feel worse and impact my quality of life. But not everyone is comfortable with that approach.
So I guess the big question is, do you have any symptoms from the pleural effusion or pain from the soft tissue mass? If it's impacting your breathing or causing pain, a treatment change would almost certainly be called for, but if the progression is only minor and you don't have any symptoms yet (you say you are feeling well), you might be able to hold off for a while and just monitor it closely if you and your doctor are comfortable with that.
Good luck with your appointment on Friday and let us know how it goes.
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Hello Lori
Thank you so much for your response.
I am so sorry to hear that you have had disappointing results- well partiality disappointing results as it is keeping your bones and liver stable. I am happy that this approach - symptoms vs treatments vs quality of life is working for you.
I was so hoping H and P would last for years keeping everything stable as I am sure you were too.
Have all of your scans shown progression in this past year? Have any come back stable?
I am terrified to be honest. And in disbelief as I do feel very well.
Do you live in Canada? I do.
Kadcycla is the next line but I know nothing about it. Can u tell me a little about it.
Thank you once again Lori .
Cathy
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I have heard of Kadcyla and I am also in Canada. The drug has chemo attached to HER 2 drug. Think of it as Herceptin/Perjeta on steroids.
A lot of the side effects read as though they are similar to what we deal with on Herceptin and Perjeta.
The advantage is that the chemo is targeted so it is not going to be a systemic response. Should mean a gentler treatment than IV chemo treatment. There are some who have been on it who can speak to their experience with it directly. It does not try to destroy all cells JUST HER2+ proteins.
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Hello all-
I haven’t been on the board much for the last couple years but I figured I’d weigh in on KADCYLA since I took it for about a year (or so). It’s actually been described as a Trojan Horse or “smart bomb”, in that the chemo - which is extremely potent and I believe is called (?) emenstine- is folded into Herceptin molecularly speaking. The cancer cell receptor attaches to the Herceptin as usual, but then the chemo is released INTO the cancer cell itself. It’s essentially delivered in, and only when in does it get unwrapped!! Pretty incredible and I didn’t experience SE ‘s except for a nasty rash on chest and arms especially in sun.
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Cathy, others have done a great job answering your question about Kadcyla (and I'm in the US). After reading so many inspirational stories on this thread about women getting many years on H&P it is disappointing that I won't be one of the people who gets a nice long run, especially since the treatment is fairly easy to tolerate as far as cancer drugs go. I really thought that with as healthy as my body has been staying (even my labs have never wavered since Dx) that I would be one of the lucky ones to get many years on H&P.
No, I haven't been able to get stable for over a year now. My last good scan was January 2018, one month before I finished my first round of taxol. It hasn't been all bad news - but we beat it back one place but it pops up in a new spot or gets worse someplace else. I have a very aggressive form of IBC (Grade 3 with ki67 in the 60s/70s every time we biopsy) and it has been very sneaky and stubborn, resistant to treatments, and even when I get a partial response it starts right back up a few weeks later. Mostly loco-regional - skin, pec muscle/chest wall, a tumor under my arm tangled in my brachial nerves, now my last 3 scans have shown an increasing number of nodes that are active from supraclavicular down through my abdomen that we're watching (clusters of nodes in mediastinum, retroperitoneum, mesentary). On the plus side I never get scanxiety like many others do, I already expect bad news and if I ever actually get a stable scan again it would be a nice surprise haha! But don't worry about ending up like me, as I said I am an unusual case with a rare type of breast cancer known for treatment resistance, and mine seems to be even more aggressive. My doctors like to tell me that I'm a "complicated" case. But it is strange and frustrating how H&P works so well on part of me, but not all of me.
Despite all that, the good news is that H&P cleared up my liver and bones and kept them that way even while it was failing elsewhere, and my other major organs (heart, lungs) are still clear, which I think is probably due to the H&P. As long as we can keep my organs clear I can deal with the rest of it.
Lori
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Dear Lori, not only these other stories are inspirational - you are the real inspiration here. It is easy to be inspirational when things go good but you are strong and fight when most of people you see on the street would just give up instantly. That is a real inspiration to me.
Saulius
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Lori, I am sorry you did not get a longer run on HP.
I am on a chemo holiday from HP, been dealing with more digestive issues of late and exhaustion. Blood work shows only slight anemia but I know I don't take enough foods with iron.
Trying to reset my body. Bought treadmill since too tired to leave apartment most days even with walking on a yoga mat. It is nice to walk like I used to outside. Hopefully the chemo break plus more iron in diet and more vigourous exercise will wake my body up. That would sure be really nice.
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hi Lori
I wish there was a like on this website I totally agree with SandraB’s comments above.
You were so kind to take the time to explain things to me this week.
I appreciate all that responded.
This is a tough gig, I would not wish this life on anyone but I am sure happy that I have this website.
We are all in this together.
Cathy
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Updated June 28th- first off thank you to all my sisters for keeping me afloat this week. after a very stressful week my MO has done a good job of making me feel more comfortable about my scan . These were her comments on the scan ( just in case someone might find themselves in this scary situation with "slight progression" on a scan.
Her comments were as follows:
1) scans are only one piece of evidence that the medication is working
2)she puts a bigger emphasis on how a person is feeling to get the whole picture - I.e I am feeling great, more energy, less shortness of breath and no pain right now
3) SRBT treatment would not be a good choice for me because of the location of the tumour
4) should I develop pain in the sternum traditional radiation would be better but again only if pain develops and it would be used for quality of life
She pulled up the scans plus the last two scans ( all reported by different radiologists) based on these scans she concludes that this scan reporting "slight progression" is "not clinically significant".
We are staying on course with H and P.
She is however, rescanning in 2 months, rather than 3 months.
She added in her observation she would classify my latest scan as STABLE. Time will tell
They are watching me close and taking good care of me and I think I will sleep tonight.
Thank u once again my sisters.
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Thank you Saulius, but there's nothing inspirational about me. I just wake up and try to do what I need to do every day. I've had my share of dark days over the past nine months when it seemed like nothing was going to work.
Mara I'm sorry you have to take a break from H&P. I'm not really sure why my labs have never wavered through multiple rounds of chemo and a very high dose of radiation, but I do eat a diet high in protein - beef, chicken, eggs, yogurt, cheese, nuts, spinach, beans - and plenty of fresh fruit and veggies. Many high protein foods are also high in iron. I certainly haven't been getting nearly the amount of exercise I should these past 9 months, and I don't overly restrict my diet (if I'm going to die young, I am going to enjoy my pizza and ice cream!), so I can only assume that my body is getting the nutrients it needs to stay strong from my diet, or maybe I am just naturally resilient?
Hopeful that's good news! It sounds like your doctor is a lot like mine. He's told me several times that he thinks too many oncologists pay too much attention to scans and not enough attention to how the patients feels. It's good that your doctor cares about your quality of life.
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Mara - I am hopeful that your chemo holiday will really help you. I took one as well - a few years ago - for almost 9 months. I was really struggling with some side effects, and had started spreading my treatments out a little bit, and finally my oncologist suggested a break. I definitely reset by body. I felt so much stronger after a while - no more achiness, stomach issues, etc... almost completely "normal". I did resume, but don't go every 3 weeks - more like every 2 months. It helps to keep the side effects under control. I am back to being very active - hiking, yoga, etc... it's a balance, but it works for me. I hope your body gets the rest and recovery it needs!
Hello and hugs to everyone else!
XO
Andrea
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I am glad for the break. I am better with my diet. I also bought a small treadmill for my apartment which is helping. I also found out cereal has a lot of iron so going to fit in an extra bowl. A little more spinach and red meat couple times a week too. I am only slightly anemic as of now.
My MO has also ordered CT and bone scan to rule out mets as well. My three month MRI also happens in July so all will be revealed soon.
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Hey everyone! Just wanted to share something encouraging with any who’ve worried about heart dysfunction issues. I know I’m pretty excited. So back around Dec my EF and GLS kept lowering on my Echo’s and my EF ended up getting down to 38% and my GLS to -15%. So my MO and Cardio, decided to take me off H&P for 3 months and put me on 10mg Ramipril daily, to let my heart recover. I had an Echo this week and my EF is back up to 54% and GLS to -19%! Yay! So I am going back on H&P and praying my heart cooperates this time. So I am living proof that our hearts can recover from heart dysfunction or heart muscle damage. Stay strong and hopeful
Have a great weekend!
Jenny
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That's great news Jenny, congratulations!
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I have been on H&P for 5 plus years every 3 weeks and have been stable at stage 4. I was stage 4 from diagnosis. In April 2014. I have responded well the neuropathy is the worst. The only change lately is for some reason I get nausea a lot when I didn’t before and have trouble eating at times. The neuropathy is a constant. But things could be wors
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I am currently on a HP break due to exhaustion to the point of not being able to do anything. Will go back on as of Aug 14. I do feel good now but know that it is mostly being off the drugs. I am going to keep working out more now so I can continue the same workout after. Hopefullly that will temper the fatigue as I am NED and would obviously like to stay that way. I do a mix of bike, treadmill in my apartment, got a step bench to work on leg strength and dumbells. Gotta try and keep this up since do not like being stuck on the couch all day due to feeling exhausted. We will see how it goes.
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Mara - I think you are doing exactly the right things. My Herceptin "vacations" were so good for me..... I felt stronger by the end of each one and ready to tackle more.
I am scheduled to do something on Monday that I probably shouldn't be doing and might back out of..... getting my port removed. Probably not smart, right? Not sure what is motivating me to do this. I've had it for seven years, and never really had a problem with it except in the beginning. I know I'll need to get my infusions with an IV, but I guess I am banking on the fact that soon we will be able to take Herceptin in a pill form (my understanding is that other countries already do this...?)
XO
Andi
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Hi all,
Just to chip in with where I am at.
Have been on H&P every three weeks since April 2015 and am stable and very thankful. My favourite word in the English Dictionary is ....... "Stable".
While on treatment (which includes a daily anastrozole) I have experienced severe muscle cramping in my toes, feet including legs (below knees) that sometimes feel as if they are trying to turn backwards (if that makes sense), calves, upper legs, abdominal, arms, fingers. Sometimes during the night I lie in the bed afraid to move for fear of bringing on a cramp, which is impossible to do with all the night sweats, duvet on, duvet off.
Every now and then I also experience a sharp shooting pain that starts below my left breast without warning and travels like lightening up to my shoulder and neck, it literally stops me in my tracks for less then a minute but it is something that I could do without! I had itching on my arms, neck and head and used to take an antihistamine but after two years of being on this the effectiveness began to wear off. The itch was back and it was severe I used to put ice pads on to freeze the intense itch but was told by my dermatologist to stop doing this! Excessive heat or cold is not good for the skin. My dermatologist put me (last year) on a drug called Telfast (contains fexofenadine hydrochioride) and this has helped hugely.
Not sure if any of you heard of a new phase 1 clinical trial to treat metastatic HER2-positive breast cancer. The aim of the investigation is to improve on the response currently achieved with standard treatments. The trial is starting soon. Checkout NICB DCU @nicb_dcu congratulating research team led by @ProfJohnCrown whose work has resulted in a Phase 1 clinical trial called Caroline 1. Checkout Caroline Foundation. Prof Crown is a great friend of Denis Salomon (who I had the pleasure of meeting on Thursday the 4th of November 2010 at the Herbert Park Hotel, Dublin a few days before I first started treatment for early stage breast cancer.
I have port since April 2015 and to be honest I couldn't cope without it, I have heard nothing, not even a suggestion or an indication that Herceptin/Perjeta is coming in tablet form, I wouldn't dream of removing the port unless I was handed the tablets!!
I do read all the threads and wish each of you who share and contribute my best wishes.
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It’s great to read of so many women who are doing well with Herceptin, (I am too) andthanks for the heads up on the CAROLINE trial FM.
I have not heard of oral Herceptin either but a subcutaneous injection exists and was just approved in the USA in February - Herceptin Hylecta
https://www.herceptinhylecta.com/?c=her-16aa3160347&gclid=CMWJu8mFsuMCFQ2nswodT8gNgA&gclsrc=ds
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Oral Herceptin would be a dream!!
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I think I'll be on Cloud Nine already when my infusion center starts giving the shot! Any minutes/hours they can shave off my visit is a gift. Not to mention the wear and tear on my veins. But a pill...omg...too amazing for words. I could actually travel without worrying. But they still need to do something about Perjeta, my onc was quick to remind me "Well, you still have to have the infusion for Perjeta"
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Well, I backed out, at least for the time being, in having my port removed! I did make an appointment with my oncologist in August (she is hard to get into) and I will ask her about both the shot and the pill. I do remember her talking about the shot as well, and I may be making this up but I sort of think she said that it was something you would be able to give yourself at home. (?) Don't quote me. I could be wistful thinking and I will verify. I know she talked about pill forms as well. I'll get my story straight and report back soon!
FM508 I wanted to mention that I get the exact same cramping. Mine is in my feet... it's like turning In on themselves, my thighs, and my calves. I have the exact same thing at night. Sometimes when I roll over or stretch out, one of my legs will completely seize up, and I will have to jump out of bed and walk around or drink a whole bunch of water quickly to get it to stop. Sort of interesting - I have been on Herceptin for almost 7 years, and it's only in the last 6 mo - 1 year that I have had the cramping. I've always had those cramps in my torso (what are they called? ) but these are new. Not sure if they changed my dosage? Something else to ask my oncologist about.
XO
Andrea
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