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Herceptin = 'Flippin awful, anyone else?

212 REPLIES 212
UmLydia
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thanks a lot for the link blackcat, will watch it tonight. It's helpful to hear about other ladie's experiences. 

Silvertong thanks for advice, I will write down any side effects to see if there is a pattern. Had first kadcycla on Friday and so far I feel normal. Am getting my energy back after 5 months of neoadjuvant chemo. We are lucky to have these new treatments for HER2 positive cancers... so glad I don't have side effects yet this time. Have a heart scan booked for April with a cardiologist, but they told me not to worry that the slower heart beat could be due to anemia. I feel in good hands...

 

 

 

silvertong
Member

Re: Herceptin = 'Flippin awful, anyone else?

I am on Kadcyla (for primary BC which is the 'new' use for it in UK, I understand it has been used for secondary for a while). Heart scan is part of the deal.

I have suffered side effects (these tend to get put down to residual from neo adjuvant chemo) and taken a break in treatment, plus I am now on a reduced dose.

Keep notes on how you react at different points of the cycle and don't be afraid to tell your consultant each time. It isn't them going through the treatment! But hopefully all will go smoothly for you.

 

 

 

Blackcat182
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Umlydia,

I have heard of Kadcyla I think it’s quite new in the uk. I follow a lady from Canada on YouTube and she has had it and she has documented her cancer journey. Look up MissTiaPet or click the link below. She is currently on a different chemo called Nerlynx which I’ve not heard of before. Seems to be lots of new treatment out there which is great.

https://youtu.be/GzIyOptYuXw

rosietd
Member

Re: Herceptin = 'Flippin awful, anyone else?

No, I am not on Tamoxifen cos I am post menopause. I was first diagnosed with breast cancer in July 2017 and part of my treatment then was removal of my ovaries to whisk me through the menopause quickly, because that cancer was ER+. But a new primary cancer appeared in the same breast last March, which was HER2+, hence the Herceptin.

I am so looking forward to finishing Herceptin, but equally I know that it is a very important treatment. 

Stay safe everyone,

Rosie

UmLydia
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Rosie and blackcat 

yes it is Kadcycla and I will go on it because I got pathology reports for the tumour and there was 20% left after chemo. 

I asked my oncologist about side effects from Herceptin and she said the legs swelling/ aches would be due to docetaxel. Hope she is right and it doesn't come back then. Sounds awful feeling like a ninety year old woman climbing up the stairs. I had that on chemo. So good that you have nearly finished!! I am just starting, will be on Kadcycla until November. And starting tamoxifen too. 

My nails are flaky but I was on chemo for 5 months. 

I need a heart scan with a  cardiologist because my heart beat is slower than normal (they check with the radioactive TEP scans at my cancer hospital). 

I'm 43 and was in good shape before all this... it's crazy to think my heart might be suffering but I am in their hands now... I have to trust them. 

Blackcat182
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi rosietd 

I am 1 week past number 18 and final herceptin. Yay!

my nails feel very thin and split easily. They don’t seem to grow very fast and one of my big toenails is all bumpy. Hoping this will sort it’s self out in a few months.

yes I’m the same getting up in the morning can be a real effort (I’m 46) but I’m also on tamoxifen so it will be interesting to see if it gets any better now that I’m not being pumped full of herceptin every 3 weeks! I’ll report back in a few months!

Are you on tamoxifen too?

rosietd
Member

Re: Herceptin = 'Flippin awful, anyone else?

I currently have issues with my nails - splitting, flaking, etc. Anyone else get this on Herceptin? I have not had chemo, so it isn’t that.

Beyond that, I get major aches and pains, especially first thing in the morning. When I first get out of bed, I am like a 90 year old .... taking the stairs one step at a time and holding onto the bannister for grim life. I have never been like this!

14 down, 4 to go. Onward!

UmLydia
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Rosie

I don't know what it's called. Can't wait to see oncologist next week and question her on side effects. See if I can get her to admit they exist!. What physical side effects did you have? I will put up with everything but it's better to know in advance and be prepared rather than really surprised and wondering what is wrong. 

I will take the chemo version of her 2 if necessary. I'm not too thrilled about hormone therapy. Maybe if they take other breast off I won't need it. That will be an interesting conversation to have next week as well !

 

Thanks a lot for your replies!! It's really helpful. Feel less alone in the world of her 2 positive. 

rosietd
Member

Re: Herceptin = 'Flippin awful, anyone else?

Is that Kadcyla? I am not on it but read up a lot on it this time last year. It sounded a good option but just not appropriate for me at that time.

My oncologist told me there are no side effects with Herceptin. None at all.

Not true! I have had 13 cycles of it so far - 5 to go - and the physical and mental / cognitive effects are substantial. Having said that, I will complete the full course of 18 cycles, as long as my heart stays healthy, because it is such an important treatment. But I do wish oncologists would confess to the side effects!!

Stay safe and well everyone.

Rosie

UmLydia
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi blackcat

Yes I did phone the hospital, my oncologist was away on holiday but they seemed really unconcerned about the swollen legs. So I didn't worry. Before surgery they asked if I was very athletic (answer-no!!!) because my heart beat was really slow!! Little panic but again they said nothing to worry about. Surgery was fine, such a relief to have that over with. 

So will have next heart check and hope for the best. It's great forums like this exist because my oncologist really stressed no side effects with herceptin, it's a relief to see other people have similar reactions and it's really nothing to worry about hopefully. She also said if my pathology reports are not good (had a lot of chemo before surgery-see if it got rid of all tumour or not) i will have new version of her 2 treatment with a bit of "non toxic😨" chemotherapy thrown in. Is anyone else on that? I think it's quite new. 

Blackcat182
Member

Re: Herceptin = 'Flippin awful, anyone else?

hi UmLydia, just wondering if you managed to speak with anyone about the pain in your legs? I hope you’re feeling better.

I do get achy calf muscles that start a few days after the infusion.  I don’t know why the oncologist say herceptin has little side effects, it may be the case for some people but you’ve only got to read some of the experiences of people on here to know it’s not true.

Good luck with your op

x

 

 

UmLydia
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi everyone

I just started herceptin on its own this Friday (after 4 sessions in combination with docetaxel). I'm really worried because my calf muscles are swollen in my legs, they feel tender when I touch them or walk. Someone said it could be a sign of heart damage? The blood  not circulating properly.  Or is it normal several people say they have similar symptoms... 

I am due surgery for a masectomy on Wednesday, I suppose I should phone them and let them know tomorrow about legs. 

Was so glad to finish chemotherapy, the doctors said herceptin has no side effects apart from hearth damage. It is awful I am only 43 and my heart was in great shape before all of this. Feeling discouraged. 

 

 

Blackcat182
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hello all, wow this tread has been going since 2014! I’ve just had # 17 infusion of herceptin, I have pertuzimab aswell put though at 30mins each. I have one more to go and cannot wait to be done. I thought I’d add my experience with side effects:

My last chemo docetaxol was 27th March 2020 and I had hoped that i’d be done with all the body aches and pains once I started on just having the her & per but nope! It’s definitely not as bad as when I was on chemo but for me it’s definitely not without side effects.

Runny nose- will just spontaneously start dripping like a tap, cannot go anywhere without a tissue!

Loose Bowles- usually starts the day after infusion and lasts about a week. Not normally as bad a diarrhoea, just very loose.

Achy, stiff muscles- normally starts around day 5 after infusion and lasts for about 5 days but this has got worse and lasted longer with each cycle. Mine are mainly shoulders, arms, back and legs so pretty much all over. 

mild pins and needles in tips of fingers.

fogy/thick head feeling- to be honest this come and goes throughout the 3 weeks.

Fatigue- comes and goes, one day I seem to have lots of energy and the next day all I want to do it lay on the sofa.

Insomnia - definitely worse within first week after infusion.

slow growing nails that break easily 

hair has grown back but slowly, eyebrows still very sparse. Eyelashes are back but not as full or long as before chemo.

Dry itchy skin patches- mainly shins and tops of arms.

Chills - feel the cold a lot more especially day of and day after infusion 

I started Tamoxifen in July 2020 and this definitely made the aches and pains worse. I occasionally get bad cramps in my calf muscles too.

I try and exercise everyday and walking and fresh air helps a lot. I tried the Claritin but didn’t help. 

I turn 47 next month but honestly feel like this whole experience has aged me 10 years. I just hope that once the herceptin/pertuzimab is finished I will start to feel more like my old self,  all being said I would just like to point out that I am truly very grateful for being able to receive herceptin, it is a wonder drug for us HER2+ ladies. 

Big hugs 🤗 

sadye x

  •  

 

WestieRuth
Member

Re: Herceptin = 'Flippin awful, anyone else?

how are you doing ive juat been diagnosed er positive her 2 positive would like some feedback

thanks ruth

Enyoc
Member

Re: Herceptin = 'Flippin awful, anyone else?

Reassuring (but sorry you are all suffering) to read this. My ankles are agony and my hip, thigh and buttock on my left are awful a couple of days after Herceptin. Other parts of my leg on both sides are sore to touch too - like they are bruised but no bruises. It then continues but gets less sore as the cycle goes on, then starts again after my infusion.

I'm considering trying magnesium?

rosietd
Member

Re: Herceptin = 'Flippin awful, anyone else?

I can barely move when I get out of bed. I have just had Herceptin number 11 and it is definitely getting worse. My left ankle in particular will not flex and it takes me an age to get downstairs. I hate being slowed down so much! But I want to give myself the best possible chance against the cancer. Rock and hard place huh?

Leisah
Member

Re: Herceptin = 'Flippin awful, anyone else?

Number 18 herceptin next week. I came into this chat to see if any others are sore getting out of bed in the morning,  feeling low and bouts of diarrhoea. I had a double mastectomy, 5 chemo, 15 radiotherapy and a Hickman line in. Ct scans were clear after the mastectomy operation. I am also on Letrozole. I am in my early 70s.

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

I have exactly the same,pains in legs,sore to touch,shins sore and left food aching!!I thought 4 weeks after stopping herceptin I’d be a bit better,but seem to be getting worse!!!

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi,do you have aches and pains everywhere?mine are mostly legs/thighs and tight down to foot,mostly left side,and left breast stil sore months after radiotherapy too🙂🙂

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi,I get pain in left shoulder,arm and ache in hip,buttock right down to feet,it’s only left side,are u the same?always worry it’s cancer coming back,so good to hear it might just be side effects of herceptin?just finished my 9th,so not sure when pain will ever go away,it’s constant!

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi,is the pain in one hip?i have pain in left lower back,and left knee and leg,get worried about every ache and pain!!its worse at night and not too bad durin the day,but it’s there every day,does yours come and go?

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

When you have joint aches is it all over?mines is my lower left back and left knee/leg,do bit worried it’s only there?keep thinking it could be bone pain because of cancer coming back,,

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi,no weight gain,bout the only positive thing!!aches and pains everywhere tho,now sore shoulders and neck,but I heard it gets better after last dose!hope someone able to answer you bout weight,thank you for replying and take care😊😊

chemobaby
Member

Re: Herceptin = 'Flippin awful, anyone else?

@jay68 you seem to have similar symptoms of the herceptin. How was weight for you? Did you gain and if so have you lost? I seem to be struggling and it’s certainly not what I’m eating 

many help appreciated 

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi,is it all over your backache?mibes is just lower left side and bit worried!on 6 th herceptin injection and no other side effects,just pain!

christine s
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi,did anyone else get constant lower back pain on herceptin,my left side of lower back is always sore,and sometimes left leg,hip and foot!but back pain constant,so bit worried!on 6th round of herceptin,just finished 4 lots chemo,so bit worried why pain only starting now?also get rob pain and shoulder pain,falling apart here!!!!

Trixielady
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Ladies 

I'm on herceptin but this is my first time in  having it without chemo but the nurse said the chemo will still be in my system for about another 3 weeks so i have a question, can i start to go swimming or am i still at risk?? and what symptoms have you all been experiencing please although this is my 4th herceptin injection I've always had it with chemo until today, thanks xx

Heidi0622
Member

Re: Herceptin = 'Flippin awful, anyone else?

I know exactly how you feel and I also know the "guilt" because you can't do the special things you want to be able to do. You have to force yourself to think positively. I follow an instagram account "powerofpositivity" and "spiritual.news" both of them have daily messages that I check in the morning to help me stay or try to stay in a positive head space. For the kids, my sisters kids are older than mine and she reminded me that kids have a very short memory/attention span. Like when they play with a toy they HAD to HAVE for five minutes and then they run off and ask for a snack or another old toy. The best gift you can give them is focusing on your health and take "self care" seriously. Tell the little ones, mommy is in a time out for quiet time. I know how hard it is with teenagers and they don't help me as much as they should but the kids do drive you crazy and then they will do something so cute or funny you will forget even for a minute how crummy you feel. One day at a time. Rest when you want to, sleep on the couch all day for three days straight (I've done it). Vent anytime, I am here or email: hgmarsh@gmail.com Sending love and strength your way. You are an amazing MOM, I know it. Now its time to just rest and take care of you. I have Herceptin every three weeks, the third week I plan something fun because that is when I always feel my best. So, mark your calendar with a highlighter and make plans to look forward to: take your kids to a museum or a fun park, the beach a movie, a new ice cream shop. HUGS -Heidi

Julie072
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thank you heidi0622.  I am so nervous of needles I had a PICC line put in. I know my cancer hasn’t spread so I’m wondering if I will have to have it for a year/18 treatments. I’m seeing my consultant next week to see if they will lower the dose. When you have small children it’s hard for them. All my treatments have been half terms and Easter and bank holidays so I do feel really bad that I’m unable to do normal things with them. I really don’t know how I will cope with this. So scared. Xx

Heidi0622
Member

Re: Herceptin = 'Flippin awful, anyone else?

@Julie072

Usually my treatment takes a couple of days to kick in, I have had it alone (without chemo) since January and this time the following day I was at a meeting for my youngest daughter  (14) for school feeling fine. But, on the way home my entire body started to ache..every muscle. I barely got up the steps to lie on the couch and stayed there until the kids came home. I feel you. I have waves where I feel pretty good and then all of the sudden it will hit me again. So, I share this because please know you are not alone. (Which is why we are on this blog). Hydration is really important and I haven't been very good with that lately. Some patients on have said if they take Claritin Hay Fever it helps. Didn't work for me. Recently a close friend of mine said she takes B12 shots and it helps her. Ask your oncologist. Hot baths and rest give me temporary relief. Sending strength.  -Heidi

Julie072
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi, I’m new and been reading everyone’s experience whilst on Herceptin. I have had 1 treatment so far and had at least 7 side effects. I never really knew what to expect. 1st 4days I was ok. Then I went out with my boys (5 & 8yrs old). I collapsed an ambulance was called by everything was ok so never went to hospital. By the evening my arms and legs were so painful, I couldn’t pull myself up. Saturday I shuffled to the toilet but my leg muscles  had gone I couldn’t get off. I spent 2days in bed not being able to move. This really is an awful treatment and I’m only at the beginning of it. To get through this is going to be tough. Love to all you lovely ladies. Xx

ndrew31
Member

Re: Herceptin = 'Flippin awful, anyone else?

Sending you all lots of love. Hearing other women suffering from depression, itching and other side effects, really helps me get through this...I realize I am not crazy! thank you all!

ndrew31
Member

Re: Herceptin = 'Flippin awful, anyone else?

Sending you all lots of love. Hearing other women suffering from depression, itching and other side effects, really helps me get through this...I realize I am not crazy!, thank you all!,,

ndrew31
Member

Re: Herceptin = 'Flippin awful, anyone else?

The ONLY thing that worked for me is Gabapentin. The only problem with that is you will have to continually increase the dosage for it to work. But it’s well worth it! Ice packs also help if you don’t want to do pharmacy. Good luck with it!


@Marco wrote:

Hi just had my 5th Herceptin and the pains terrible all up and down my legs hips tingling in toes might have to stop this


The only problem with that is you will have to continually increase the dosage for it to work. But it’s well worth it! Ice packs also help if you don’t want to do pharmacy. Good luck with it!

Marco
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi just had my 5th Herceptin and the pains terrible all up and down my legs hips tingling in toes might have to stop this

Bless01
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hello I am new to this site. Similar side effects. Please advise.

Julieo
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi

 

just wanted to let you know that things do get better, I finished Herceptin March 2018 and after 2 months my watery eyes, which had driven me nuts,  just stopped and then around and 7 months after last injection  I started to feel much better. I do still have aches around my ankles, which I always put down to Herceptin but now I am 10 Months post treatment I am beginning to wonder if that is due to Tamoxifen! 

 

Glad that you got the all clear for your first year Mammo, I just got my second year all clear in December, it's a great feeling isn't it.

 

Best wishes to you

 

Chick1
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hello Marco,

When I had Herceptin, I use to experience the getting a cold type symptoms and feel a bit itchy a couple of days after having. It started from the second one. Blood test to check liver was fine. No obvious cause apart from reacting to the herceptin. However, as suggested below, I use to take an antihistamine day before and on the day (just bought unbranded - certirizine hydrochloride was main ingredient rather than Loratidine. 30 in a pack, Wockhart make, cost £1!) It did the trick. After using twice, I tried without and continued to 18 without needing.
All the best to you,
Chick 🐥 x
Marco
Member

Re: Herceptin = 'Flippin awful, anyone else?

Oh thought it was just me with flu like symtoms only had my 4th and dreading having more

Marco
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thankyou for tip do you get flu syptoms also 

kathyx
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thanks for the link.

blueash
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

It helps with the runny nose and the aches and pains. Details here:

http://myangrycancer.blogspot.com/2013/02/claritin-is-worth-its-weight-in-gold.html

kathyx
Member

Re: Herceptin = 'Flippin awful, anyone else?

Which side effects do you find it helps with?

blueash
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

Everyone on Herceptin should take Claritin Hay Fever tablets because it really helps with your symptoms.

 

Oh and the weight comes off and you do feel OK but it take a while!

Ali49
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thanks Regina for posting this. It is really encouraging to know. Happy 2019 to you and I hope things just continue to get better xx
Regina Dallin
Member

Re: Herceptin = 'Flippin awful, anyone else?

I am happy to report that in my seventh month after my last Herceptin my legs have finally gotten stronger.  I was getting very depressed thinking that it would never happen.  Well, I am here to tell you that it will.  I still don't have the energy I had but I started doing deep long stretches and then strengthening my muscles and it feels good. I gained 15 pounds with the Herceptin and then a complete hystorectomy.  I finally feel well enough to push myself with exercising.  Hopefully this time next year I will be back in my old clothes and fit. Don't give up cause you will get better.  I still feel very depressed at times and don't want to go on but I am determined most of the time to pull out of my depression.

Ali49
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Dizzy I have had the flu like symptoms several times about a week after my Herceptin injections. I have had to attend the walk in and the doctors a few times with temps and been given antibiotics twice for tonsillitis and a chest 8nfection.

I have just had my last Herceptin injection this week so hoping my body starts to recover- although it does stay in our system for 7 m9nths after treatment ends. Good luck xx
kathyx
Member

Re: Herceptin = 'Flippin awful, anyone else?

Apologies for misunderstanding - bear with very little brain at present!

dizzytalons
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thank you for your reply Kathyx.

I really do understand that doctors dont give antibiotics for flu like symptons..i'm sorry if my post was misleading..what i am asking is does anyone else have a lowered immune system and get those side effects and how did they deal with it..I maynot have explained myself clearly i still suffer from chemo brain..but thank you for your input.x

kathyx
Member

Re: Herceptin = 'Flippin awful, anyone else?

Fortunately I haven't had those side effects, just bone and joint ache. However, a doctor won't give you anti biotics even for real flu, much less flu like symptoms. Flu is a virus and anti biotics are useless against it.