EF effect with Herceptin

[EZSZ]

Any of you ladies on Herceptin/ Perjeta have had your EF ( Ejection fraction) declined more than 10 points?

If so, do you see a cardiologist and what's your treatment?

Thanks

[Onedayatatime60]

I am on Herceptin and EF remains Grade 1 (>60%) so I cannot say what treatment would be.

If it declined 10 points, you are likely then a Grade 2 EF. I would think they would send you to a Cardiologist and I would definitely ask for referral.

I asked my Onc "would I not feel a decreased exercise tolerance if the EF worsened"? He said - not necessarily, and the reason we are doing MUGA every 3 months is to catch any change early and refer.

Sorry- I do not know what the treatment is.

[EZSZ in reply to Onedayatatime60]

Thanks for responding. May I ask how long you've been on Herceptin? My oncologist just referred me to a cardiologist,: it took a year and four months gor my EF to gradually decline 12.6 points.

[Onedayatatime60 in reply to EZSZ]

It has been 2 years 2 monthsHaving MUGA tomorrow a

[EZSZ in reply to Onedayatatime60]

Good luck tomorrow, hope it goes well

[Onedayatatime60 in reply to EZSZ]

Thank you. Have to wait 2 weeks to see Onc. But for some reason don't have anxiety with this one only with CT scan

Can I ask with drop in EF did you feel short of breath or decreased exercise tolerance?

[EZSZ in reply to Onedayatatime60]

No, nothing really. It's hard to ssy because I had pleural effusion, and that caused me sever breathing issues. Now I am fine, almost normal - whatever normal is

[kokopelli2017 in reply to EZSZ]

hi EZSZ. sorry to hear all this. i too lost some heart function but due to IV chemo (red devil) back from my primary BC treatment. do you mind if i ask what caused your pleural effusion?carole xo

[EZSZ in reply to kokopelli2017]

Yes, of cause. Cancer cells spread in my left pleura, decreased absorption and thus encreased fluid presence to the point of my left lung collapsed. There was a lot of neglect in my de-novo diagnosis

😅However, the EF has gradually decreased since November 2020: 62.8 down to 50.

I feel fine, but my oncologist has just referred me to a cardiologist as a standard of practice: 10 points down or more.

May I ask how much yours decreased, and what was done?

[Titaniam_Turtle in reply to Onedayatatime60]

What is EF? I was on Perjeta and Herceptin for 13 months. I had the pleural effusion, too. I couldn't figure out why I could barely walk from my bed, to the bathroom, not 10 feet away. Crazy side effects. Anyway, no one ever mentioned EF. I did have an ultrasound, I think, before and after the treatment, but no change. It was my second cancer while I already had MBC that was er/pr positive so everything was kind of a blur and of course chemo brain.

[Onedayatatime60 in reply to Titaniam_Turtle]

EF stands for Ejection Fraction (specifically of the left ventricle of the heart)

Normal in a healthy person is generally over 60 % which they call

Grade 1

It can be reduced for various reasons including previous heart attack or heart failure, cardiac rhythm abnormalities to name a few

They do a baseline MUGA prior to starting Herceptin so any changes can be monitored and intervention done if needed

A cardiac echo will also give Left Ventricle Ejection Fraction but I was told a MUGA is more specific

Hope that answers your question without giving TMI

[Titaniam_Turtle in reply to Onedayatatime60]

Yes, thank you!

[EZSZ in reply to Titaniam_Turtle]

Hi Titaniam_turtle, EF stands for Ejection fraction, which is the measurement of the blood flow ftom your left vertical to the body. Herceptin affects the muscle in the left vertical for most women on Herceptin, but some get away with an insignificant damage. The gold standard here, is: a loss of 10 points or more require a follow-up by a cardiologist. If you'll look up your heart echo, or perhaps you've done the MUGA test, your EF number would be there.

Hugs, dully

[Titaniam_Turtle in reply to EZSZ]

Thank you for the info!

[EZSZ in reply to Titaniam_Turtle]

I meant ventricle, not vertical - damn autocorrect 🙂

[Titaniam_Turtle in reply to EZSZ]

I understood. I leave words out all the time. I just had ultrasounds so I am sure it was ok. I never heard of the MUGA test. My MBC came from my hormone positive cancer so I am hoping the Her-2 will not come back and no more herceptin. Can you imagine having MBC for 2 different cancers. I would say God couldn't be that cruel but after reading so many stories here, I know that is not the case. I hade a melanoma, stage 1, 18 years ago. I didn't bother with my colonoscopy because I thought if I get a fourth cancer I am done. Some may say that is careless but seriously, I am not Ruth Bader Ginsburg. Three is my max! I do want to know my EF now. Such a surreal lives we live.

[kokopelli2017]

hi again EZSZ. so sorry to hear about that and your neglect at time of diagnosis....hopefully that is no longer an issue! i was asking about the pleural effusion because they can sometimes be caused by a low EF....but that was not the cause for you. which is good. although the pleural effusion and collapsed lung sucked no matter what the cause.

with your EF now being at 50, despite that you are showing no symptoms (shortness of breath walking, shortness of breath at rest, swelling of lower extremities, engorged veins in your neck) , i am so relieved to hear you now have a referral to a cardiologist!!! you would not want your EF to lower another 12.8 points over the next 16 months.....would not be desirable news. guidelines may differ somewhat but an EF of 60-70 is normal/great. an EF of 50-60 good, 40-50 fair, and EF < 40 is considered poor(although i had patients that had EF's of 20 and were still closely managed medically to where they had a somewhat decent quality of life). everybody is different as to what their body can tolerate as you well know.

but the good news is that your EF is NOT going to drop dramatically! your cardiologist will make sure of that! there are many ways to increase a lower EF and/or to cope with it. i.e.....exercise(walking), low sodium diet, fluid restriction, and yes, medications! i hope this info is helpful...that is my intent anyways. you are not at a point of alarm.....especially since you have no symptoms at present. (i was an RN on a cardiac unit for 6 years....but not a doc so take what i say as educational but not truth)

before the red devil chemo, my EF was at 70.....but i was a long time runner. my oncologist at the time of my chemo would not allow me to have a repeat echo after chemo, despite advocating for myself. ended up 'firing' her for another equally annoying event. so i don't know what mine is now but i know my aortic valve was damaged (via scans) and i am pretty sure my EF is somewhere in the 50's now from how i feel.

this mbc is hard enough without the unwanted side effects of the meds we need to take. but that is our reality!

good luck at your Cardiology appointment!

sending hugs....

carole xo

[EZSZ in reply to kokopelli2017]

Back at you, Carole. Very kind of you to take the time to write a detailed reply.I lead a very healthy life, and I agree with you vis-a-vis our reality.

There's a lot of optimism in your words, I like that. I try to lead a normal life between treatments, so another doctor is a nuisance. But who knows? Maybe I'll place my heart in the hands of a young, gorgeous man 🤣

Good night,

Dully

[Titaniam_Turtle in reply to kokopelli2017]

Hi Carole. I was wondering how you are getting along with changes in your life. I just wanted to ask you, what is the red devil. I have heard of it but didn't know the details of what was administered. Sounds like you thoroughly enjoyed it (sarcasm).

[kokopelli2017 in reply to Titaniam_Turtle]

hi Titaniam_Turtle. yup, i loved the red devil....lol. i read your bio and you have been through a lot....primary BC in both breasts....3 years apart. yikes! and all that radiation and chemo. you are a trooper. i hope you are doing as well as possible....fingers crossed.

so it sounds like the only chemo you didn't get is the red devil. it is just another chemo but the side effects can be harsh and your hair falls out super fast. although aren't they all in their own way! the real name is Adriamyicin and the generic is doxirubin...sp?. it was nicknamed red devil as it is pinkish/red in color.

thanks for reaching out.

sending hugs.....

carole xo

[Titaniam_Turtle in reply to kokopelli2017]

I had no idea your spine was rotated and hunched and curved. When were you diagnosed with MBC? Was your spine the first location of the mets? Did you initially have reconstruction on your spine? Sorry for so many questions. I am so fortunate that Ibrance/letrozole/Xgeva has worked for so long but I know it just a matter of time until progression will happen. I am trying to get some sense of what that future might be. I know everyone is different but you are the first that described something similar to me. It is fantastic that you have grandchildren. My kids are 17 and 18. I had them late. I do hope I get some grandchildren but not for a while. I keep asking around to find someone with a baby to hold. No luck yet.

[kokopelli2017 in reply to Titaniam_Turtle]

hi TT. i was originally diagnosed with MBC in Oct 2017 so i am 4.5 years in! i thought i had a sports injury and went to a spine and sports doc and turned out to be one bone met to spine....L5 and one mets to iliac in pelvis. and then the fun began...lol. wasn't until about 2 years ago that my spine started to 'collapse'. i was very mobile until i wasn't. yes, i still had pain...but no collapsing....meaning no bend or rotation.

if you want to know more about how bone mets can cause spinal dysfunction....scroll down to the posts near the bottom of this thread and read the ones from TheDrivenSnow....she does a great job explaining......unfortunately from first hand experience.

why? you mentioned similar to me. are you having spine issues? hope not.

haha on the babies!

carole xo

[Titaniam_Turtle in reply to kokopelli2017]

I lost a tremendous amount of mobility with my mbc diagnosis. Tumor pushing on spine caused serious reconstruction. Pins, donor bone, cement. I have been mbc since Jan 2016 and no change, knock on wood. I just feel like I have been too lucky. Sad, huh. Too lucky to have my spine hold out. I can't stand for more than a few minutes and can't go more than 50 yards. But I am able to stand and sit so until that's a problem I won't be getting a wheelchair. Just being paranoid. It crops up every now and again even though I am pretty optimistic (some think I am in denial but not even close). I went from a stage 2 bc with small chance of recurrence to mbc and emergency spinal surgery with a scar from around T2 to L5. Titanium Turtle - titanium holding my spine together and I walk or move at the pace of a turtle. Thanks for checking. I am good for today.

Andrea

[kokopelli2017 in reply to Titaniam_Turtle]

hi Andrea. somehow i missed this yesterday. wow....you have a lot of hardware and cement etc in your spine....yikes! so sad to hear of your mobility issues. it really changes your entire life....such simple tasks become so difficult. or nonexistent. so with the exception of the deformity, we are very similar. i can only stand....(hunched over though) for a couple minutes before i must sit. and i can make my way to the bathroom....yay!! and the kitchen...lol. i have small, one floor house, which is helpful. so i do not use the wheelchair inside the house....that is for if i go somewhere outside where walking is involved or a mall....although i rarely do that stuff anymore.

that is pretty amazing that your spine 'was put back together again' back in 2016 and still holding👍. lets hope it continues for many years. how are your pain levels?

i had my second Ct scan of my neck today for new mets to multiple lymph nodes above my collarbone and up left side of neck. curious to know what they imply?? not sure i will get an answer. so now i have to wait....as usual😉🙄🙄🙄🙄🙄.

once again, so sorry to hear on your spine and lack of mobility. i get it! best of wishes to you!

hugs...

carole xo

[kokopelli2017 in reply to Titaniam_Turtle]

so i forgot to mention that the red devil often causes damage to the heart. maybe other chemo's do as well but this one is especially noted for this side effect. most times, i think, the damage is not symptomatic. but in more severe cases, it can lower your EF (ejection fraction) which is an indicator of how 'strong' your heart can pump. if your EF is lowered too much, you can develop 'heart failure' which basically means your heart is unable to pump your blood strong enough to keep up with the body's demand and also causing the blood to back up.....resulting in shortness of breath and/or swelling in your extremities. this damage can range from very mild to very severe.

because this is such a common side effect, your oncologist will usually order an ultrasound of the heart before you start this treatment, to make sure your heart is healthy enough to begin with and therefore can tolerate the red devil. it can also cause damage to your heart valves which is what happened to me.....but not to the point where i have noticeable symptoms.

hope this explanation helped...

carole xo

[Titaniam_Turtle in reply to kokopelli2017]

Perfect, thank you. Mine was for the Heceptin I think. No damage but I wanted to understand. I read that the red devil is the strongest chemo. God bless you girl. You are amazing.

[kokopelli2017]

touche....lol

[TheDrivenSnow]

Yes, my EF has declined to 42% with the administration of Herceptin. I managed a year and a half on immunotherapy before receiving an alert from Oncology and being referred on to Cardiology. I'm now on four daily cardiac meds - Nebivolol, Ramipril, Spironolactone and Furosemide. Echos every three months, more frequently when issues spike, e.g. breathlessness. I have massive ongoing swelling, despite water tablets. Exercise is out of the question for me, unfortunately, because the multiple tumours throughout my spine and pelvis, among other sites, have left me a wheelchair user with inhibited mobility. Herceptin has been suspended since EF was found to have declined to unacceptable levels. The only med tackling the cancer from my neck down is now Letrozole. (The brain tumour in my occipital lobe is inoperable and there's nothing guarding against further spread within my brain.)

[EZSZ in reply to TheDrivenSnow]

Wow, that's horrible, I am so sorry.Thanks gor sharing. Why four cardiologist meds? Isn't there a second line of treatment that you can take?

Where are you located?

[TheDrivenSnow in reply to EZSZ]

I'm a compliant patient! I'm prescribed four separate drugs to assist my heart and so I take them: Nebivolol was added in when Ramipril alone proved insufficient and the breathlessness and palpitations persisted. Spironolactone was on a repeat prescription in any case because of the extreme swelling induced by multiple cycles of Paclitaxel. Furosemide was added in because Spironolactone alone proved inefficient.

It does at times feel like a patch-up job. When another piece of the jigsaw doesn't quite fit, a length of sellotape's hastily stuck to the new piece and the anchoring piece, and many fingers are crossed. And so on, ad nauseam.

I'm in Hampshire in the UK.

[EZSZ in reply to TheDrivenSnow]

Hi, I am dizzy trying to figure out the list of meds, wow! Thanks for sharing, I sure do hope that it at least keeps you well.Hugs, friend

[TheDrivenSnow in reply to EZSZ]

Wellness is subjective!Without the drugs, I'd be in an even more wretched state, so naturally, I'm loath to be without them. But, in real terms, they enable me to do very little; they barely touch the sides of the pain and discomfort.

We find, though, that we can tolerate extreme, unrelenting pain we never thought we'd experience. Astonishing.

[kokopelli2017 in reply to TheDrivenSnow]

hi. so sorry to hear. you have so much on your plate. and it's always a hard pill to swallow when the needed treatment causes damage....mbc bad enough on it's own. i am sad that happened to you. the cardiac meds you are on sound totally appropriate for a symptomatic EF of 42...they all help the heart with it's 'cardiac output' but each one by a different approach (my thoughts) and the Furosemide is the 'water pill'. just throwing in my two cents.

i too am in a wheelchair when out of house so i can empathize with impaired mobility....collapsing spine from the mets to my lower and mid-spine and also spine has 47% curve to the left and my torso is rotated. i look like a freak and my self identity has taken a hit. but it is what it is and can't change it so must accept it. i'm working on it...lol. and of course i hate to ask for help!!!

as EZSZ already asked....is there not a med that they have suggested for your 'neck up'...i.e. your brain? or maybe you don't want to discuss. whatever you are comfortable with.

sending a BIG hug....

carole xo

[TheDrivenSnow in reply to kokopelli2017]

What a kind message, Carole! I can feel your compassion from here... Both Spironolactone and Furosemide purport to tackle the preposterous swelling. They sometimes provide marginal relief, but I've had to donate vast swathes of my shoe and boot collection to charity! They've gone the way of so many of my clothes. But that's by the by. A lighter wardrobe and decluttered shelves make for a lightness of being I've not known before.

Under more propitious circumstances, we could be spinal sisters! Like you, the torsion is extreme, with vertebrae in my mid-spine collapsing in on each other in consequence of being pushed outwards by tumours, causing my upper back to hunch and contort. L4 and L5 at the base of my spine are affected by degenerative disease hastened by the multiple tumours in that area. The resultant pain is indescribable and shoots through my pelvis and down both legs. Morphine doesn't touch the pain. Both long-acting and immediate-release Oxycodone are supposed to assist, as is Nortriptyline. Baclofen is added to the mix to tackle the unbearable spasms. I've learnt to stay one step ahead of the pain as best I can through the day: at last count, I was on upwards of 40 tablets and capsules a day, plus S.O.S. Shortec liquid.

I could open a pharmacy if I put my mind to it!

I identify so very much with your reluctance to allow others to help. I think that's very much bound up with both a sense of pride and, conversely, self-effacement. Even resting during the day can elicit feelings of guilt. When the weariness becomes intolerable, though, I'm learning it's ok to take time out to rest. Bodies are such susceptible things!

Nothing is apparently recommended for my brain - for now. The immunotherapy I was most recently being administered every three weeks before Herceptin pushed me into heart failure is on hold until such time as my heart recovers sufficiently to warrant reinstatement. So many conditions and contingencies.

I can't help noticing that patients in the U.S. and Canada are so much more involved in their healthcare and decision-making - and, I suppose, are consequently more empowered - than we are here in the UK within the NHS framework.

I'm grateful for your concern xXx

[kokopelli2017 in reply to TheDrivenSnow]

hi DrivenSnow.wow.....spine sisters for sure! you are the very first person i have come across who shares the torture of this bent (47 degree curve) and extremely rotated spine. and yes, degenerative changes superimposed upon the many met lesions. and like you, the pain is so intense and unbearable at times, despite the high doses of pain meds.....i too take morphine and feel like it is almost useless....and also take high doses of short-acting oxycodone but the relief is minimal. and yes, extremely hunched over and also lean significantly to the left....leaving me deformed and so off balance. the pace of collapse has picked up significantly over last 6 months. very scary for the future....

it blows my mind that a person can endure so much constant pain and yet still function to some degree. i imagine you are the only person i have come across that truly understands. not good for you at all. but must say, it makes me feel like i am understood by at least one person in the entire world. sorry it has to be you....lol. but it is validating. and makes me feel less alone. and not crazy. i used to be so active...running, yoga, dancing... all brought me so much joy. that joy has been taken from me. one more loss. my ex divorced me upon primary diagnosis 9 years ago. i was dating until my spine went south....so i am 'doing this mbc' mostly alone....although i am blessed to have two sisters and two adult daughters and three grandchildren. most friends have disappeared with the exception of my closest friend, although the dynamics have changed a lot. but i am thankful she has stuck with me!

and i get the clothes and shoes! funny....i was just telling my sister i need to ditch my entire closet....nothing fits right. i have adopted a 'uniform' of sorts and wear the same few items over and over. so i guess i can become a minimalist as well😉. just need help to sort and donate!

thanks for listening to me rant. and yes, i feel guilty about complaining to you. you have the much unwanted burden of dealing with heart failure and an inoperable brain tumor on top of the spine deterioration. my heart goes out to you! i so hope🙏 they can manage your heart failure and improve your EF to where you can tolerate the immunotherapy again.

thanks for reaching out!

sending BIG hug...

carole 💛🌷💛

[TheDrivenSnow in reply to kokopelli2017]

I totally get the uniform thing, Carole! I'm the same! I'm working on paring down a wardrobe I now barely wear. (Nothing fits, anyway, and the things that do fit, I can't climb into!) Although I have good intentions and think to myself each morning (or whenever my circadian rhythm allows me to awaken): "I'm going to attack this today", sadly, I never seem to find the wherewithal that's needed... This wretched pain has much to answer for.

But I'm learning to give myself ample space and latitude. I'm no longer encumbered by tech notifications and alerts! I no longer hasten to respond to missives and messages! Anything that can wait does wait! I've learnt that if I leave things long enough, they usually sort themselves out, anyway 😅

Vent away... I will (eventually 😆) respond.

Thank you for your kindness and kinship 🥰

[TheDrivenSnow in reply to kokopelli2017]

Also - I'm finding myself fuming at your ex-partner. Abandonment at a time of unimaginable need is unpardonable.

Arms around you 🤗

[Snowdrops_17 in reply to TheDrivenSnow]

Hi SherinSo very glad you are still here🙏❤️

I wish you and all on here, dispite all suffering "A Happy Easter"!

God bless you all ❤️

[TheDrivenSnow in reply to Snowdrops_17]

Fond greetings, Christiane! Still here, yes, but my default state of being is now "tech-avoidance mode"! I hope you and yours had a wonderful Easter, as we did (our boy visited: such a treat!) 💛

[Snowdrops_17 in reply to TheDrivenSnow]

Bless you Sherin ❤️❤️❤️🙏You and your family are always in my thoughts and prayers! 🙏❤️

[TheDrivenSnow in reply to Snowdrops_17]

My heart is full 🙏🙏🙏

[Snowdrops_17 in reply to TheDrivenSnow]

Sending lots of love and hugs to you 💕💕🤗🤗

[Titaniam_Turtle in reply to TheDrivenSnow]

Did you have any heart problems prior to the herceptin? God bless you too. I hate that our treatments cause more problems. The strength of the woman here continuously amaze me.

[TheDrivenSnow in reply to Titaniam_Turtle]

No cardiac problems whatsoever before the herceptin. I have my next echocardiogram coming up at the end of this month; whether or not the herceptin is reintroduced is contingent upon the EF increasing to acceptable levels. Before that, though, I have MRI and CT scans to see what the cancer's doing... Always an unnerving time.

[Thatflowerlady]

Hi I am on perjeta & herceptin every 3 weeks . I had a decline in heart function with my last Paclitaxel treatment . I now go for MUGA every three month and was referred to a cardiologist . Prescribed Bisoprolol and monitored. The numbers have improved but I don’t know specifics . At the time this was all happening I also was diagnosed with a blood clot .

I am feeling well ( or not too bad ) can carry on with my semi retired life ) .

I hope your treatment for this is has little to no side effects & is effective .

Luann

[EZSZ in reply to Thatflowerlady]

Hi Luann, thanks for responding. How long have you been on H&P? Do you know how many points your EF declined?I've been treated since December 2020, chemo ending may 16, 2021. Seems like I'm in complete remission and I feel great - if I ignor side effects: broken nails, joint & muscle pain, fatigue - so this is a bummer. But, it's good to be followed by specialist, and although I try to avoid unnecessary meds, I know that H&P keep me alive, for which I am grateful.

So glad you feel well Luann, many, too many of us, suffer.

Hugs,

Dully

[Thatflowerlady]

Sorry it took me so long to respond , life got very busy . I am on the almost exact time line as you .sorry I have no idea what EF means ?

My other side effects have been similar to yours . Thin peeling nails , muscle & joint aches and some fatigue . I started some physio therapy for the muscle pain and spasms , and have increased my hydromorphone dosage .

I have some mobility issues ( climbing a tall ladder is something I could not do safely ) I would love to be able to go for walks or hikes but it is not physically possible for me. I find I can only stand for 1-2 hours and then need to lay down even if it is for 10 minutes and my lower back feels better .

I have mentioned before I was on Ibrance for 22 months and didn’t feel great, it wasn’t the miracle drug for me . I have found the Paclitaxel , herceptin & perjeta have been easier on me physically than Ibrance and faslodex was.

I hope we both do well on our herceptin & perjeta for a long time Dully . Do you take any other hormone blockers with it ?

Luann

[EZSZ in reply to Thatflowerlady]

Hi Luann, I am so sorry to hear that you suffer. Every day, when I start my walk, I claim that I shall only do as much as I am capable of, because my muscles/ joints hurt. I can tell you that by the end of my walk, it hurt a lot LESS. I take tamoxifen, that's it. No pain medication. When I sit too long (which I do, because I'm exhausted after activities), my back is killing me, so I try to stretch daily as well, and get up my behind to bring myself a cup of tea - instead of asking my husband 🙃

I hope you feel better, Luann, wishing you a tasty Easter

Dully

[Thatflowerlady]

Oh sorry if I came across as not doing well. I am doing well but trying to accept my reality and some limitations . Also to treat my discomforts as gently as possible so I can live my best quality of life and continue to do what I love to do . Happy Easter to you !

Luann

[Thatflowerlady]

What is EF ?