68573members
360683posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Herceptin = 'Flippin awful, anyone else?

192 REPLIES 192
Highlighted
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?

Highlighted
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,,

Highlighted
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😊😊

Highlighted
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 

Highlighted
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!

Highlighted
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!!!!

Highlighted
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

Highlighted
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

Highlighted
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

Highlighted
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

Highlighted
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

Highlighted
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!

Highlighted
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!,,

Highlighted
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!

Highlighted
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

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

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

Highlighted
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

 

Highlighted
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
Highlighted
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

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thankyou for tip do you get flu syptoms also 

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thanks for the link.

Highlighted
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

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Which side effects do you find it helps with?

Highlighted
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!

Highlighted
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
Highlighted
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.

Highlighted
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
Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

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

Highlighted
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

Highlighted
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.

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi everyone, I had Herceptin number 16 last week, after a few days of having it i get flu like symptoms, high temperature, aching joints, nasal congestion, sore throat, cough etc..been to doctors and they wont give me an antobiotic. I only have 2 more to go and will be glad to be finished, then its just the letrozole..I had the all clear for my first year mammogram which is really great news but the side effects from the herceptin is really making me feel miserable and ill when i should be celebrating..does anyone else have side effects like this from herceptin? Thanks in advance.x

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Thrplummer- try Aveeno cream for the itchy skin - it has helped me and I’ve found it does lessen with time. Hope your pain does the same - try taking an antihistamine tablet with Loratadine in ( Clarityn is brand name but can get generic ones cheaper) that helps with bone aches. Good luck with your treatment 

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

I’ve only had herceptin once, last week as a maintenance drug. The itching is terrible mainly on my arms and shoulders. My feet hurt almost nonstop. Please tell me if the itching subsidies...thx 1st time on a blog site.
Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Sorry to hear about your side effects.I all so had pain in my legs ,started with my feet and ankles swelling up and because you they don't test your blood very time you have the drug it got worse and when i mentioned what was going on the oncologist said
"My feet swell up at the end of the day "
(She was a quite a heavy doctor) and then said to all the women "your blood pressure are all up today" another side effect .This was near the second last treatment. I ended up having to go to my doctor .and when he saw the swellling in my legs and feet sent me to A&E incase the fluid was going into my lungs as that came back that it wasent I came back home and then after another 6 days the pain and swelling
got that bad I couldn't walk so back up to see my GP he sent me back down to A&E
Was admitted for a week because I had that much fluid in my body
I ended up with kidney disease.Ended up in Renal seeing a consultant and put on a drug for people that has kiddney transplants and long term steroids that have side effects. Just finished haveing to get check up last year. ..I'm now free of Edema and the drugs ....I stated my treatment for breast cancer on February 2007 first Cemo , Radio, Hersepiton.Got the all clear for the breast cancer and the kiddney has got back to normal again but it has been a long hog .Don't think my body could tolerate all the treatments and my Kiddneys suffered ...The kiddney specialist put a yellow or red flag warning for the Herseption drug .Put never comitted saying it was that that caused the kiddney Disease .I sopose my cancer hasen't returned .So I have that to be thankful for......Thoughts and prayers for you all that are going thru treatments .just a warning if you think something is wrong with your body like my legs swelling up and it took my GP to send me to A&E for my Oededma not my onchologis.

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

I am at the point where i have no idea which drug is causing which side effect! I have now had 15 herceptin and have been on letrozole since April.

My shoulders are so painful!! I need help to get my coat on amd my top off when getting undressed. I feel shattered most of the time and quite down. I am short tempered, snappy and tearful. I seem to have a cold most of the time with a low grade sore throat. My nose is completely dry and crusty and my mouth is always dry too. My eyes are crusty when i wake up in the morning - or the middle of the night - as i am not sleeping great. My legs are heavy and stiff when i first get up from sitting!

I have just stopped taking letrozole as my onc nurse said to stop for a month as that will help us to see if it is the letrozole causing the shoulder pain. I dont really want to stop but i am giving it a go! 3 days without it but no improovement in shoulders yet!

Chemo was yuk but i knew it would end. I think i feel worse now because if this is going to be long term it will affect my whole life.

Roll on the end of Herceptin!

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Just wanted to share my thoughts on Herceptin. I’ve had a break from chemo as I’m on the ROSCO Trial, my last treatment was 1 Aug. I’ve been having herceptin three weekly and have found the side effects to be quite debilitating. The muscle and joint aches keep me awake at night and my nostrils are sore, bloody and crusty, yuk! I also have bowel problems and low grade nausea. I know that this drug is a life saver but it is depressing to think that I will suffer these SE’s for a whole year. Also I’m dreading the addition of tamoxifen in the new year. Trying to stay upbeat but it’s a struggle 😞
Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Feeling your pain!  I am on same treatment, and I am having a devil of a time with Herceptin. I absolutely hate it 😞   I have my infusion every 3 weeks at home, via a drip rather than injection.  Every time I swell up like a balloon, inside of my sinuses/nose/throat etc swell up, I get really wheezy and out of breath, I itch like crazy all over for about 7 days afterwards, at night my feet and lower legs get really hot and feels like bugs crawling around under my skin, I have a headache for about 7 days after the treatment, my insides go into meltdown, my brain hates me, and all sorts of aches and pains.  I find as I am receiving the drug that my head feels weird and I get a bit confused and wobbly in the head.  It is absolutely horrible, because as you say, health professionals just dismiss you when you ask advise about the side effects because apparently there aren't any.  I have had 8 treatments so far, ten more to go ugh. 

 

It also freaks me out that there is a risk of heart damage from the treatment..... 

 

And you get halfway through second week and start to perk up and then week three comes around and with it treatment then back to poo again.  Does rather make one a bit of a negative puss ha ha.

 

It has been 10 months how since day of initial diagnosis to where I am at with treatment (having had chemo, radiotherapy etc. etc. etc.)... and it feels as though it is NEVER ENDING!  hard to keep positive sometimes, so I right there with you MOAN MOAN MOAN ha haaaaaaaaaaaaaaaa.

 

Hope things get easier for you, for everyone, all of us!  Soldier on we must : )  xxx

 

 

 

 

Highlighted
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

Hello Regina,

 

The doctors say "no side effects" re aches & pains because not everyone gets them and they don't kill you!

 

There is a scientific term used in statistics which is "insignificant" and that is what they go by. So for the doctors heart trouble is significant and you get scans to see what is going on.

 

For the chemo if they give you it when your blood work is too low it can kill you so they test your blood before every dose.

 

In the grand scheme of things a few aches are trivial (not if you are having them I know) compared to killing you off with the treatment!

 

Take Claritin if you suffer http://myangrycancer.blogspot.com/2013/02/claritin-is-worth-its-weight-in-gold.html

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi - I am about the same stage as you my last Herceptin Dec 19th this year and started on the Letrozole and take every day. I am a fit 65year old and I worked all through my treatment and found this was the only thing keeping me going - however instead of feeling better with my treatment coming to an end I actually feel worse. Pain in my shoulder, hip and no feeling in my left foot at all - constantly tired - insomnia - sweating and generally no energy at all - I ask my GP and they just want to pump more drugs in - I ask the Breast Cancer nurse and was told it's a small price to pay - Oncologist was surprised that I had these side effects - I don't want a bravery badge or anything as such but struggled through Chemo, Surgery and Radiotheraphy to be told this is it !!!

Highlighted
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

they will get better and I don't think it's the Herceptin which causes the foot/leg problems - I'm sure it's the chemo - I think Herceptin causes other problems and you don't find out about those until after it's all finished.  However, I believe Herceptin is a life saver, I'm thankful it was discovered and for me it worked and I'm also happy to be alive albeit not pain/ache free and feel as though I've aged 20+ years...! x

 

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

thank you for your post. I needed to be reassured that my legs will get stronger and you did that for me. xoxo
Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

I am so appreciative of this forum because my oncologist said to me "I didn't know there were any side effects from Herceptin".  Are they being told to say this?  I am so looking forward to my legs being stronger.  Some days when I go to the store by the time I get back to the car I am an emotional wreck so I take time out to weep a bit cause I don't want my family to see me crying anymore. 

Highlighted
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

Hello Regina - my final herceptin was June too and I still can't walk properly...  They believe I have plantar fascillitis which was caused or aggrevated by chemo.  I get some days better than others but I do suffer flare ups where I can barely stand let alone walk.... so frustrating as I have more energy and enthuisiasm but the foot doesn't match....!  I like the exercising in the pool idea - I so wish I could swim! x

 

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hello Jay, I had a under active thyroid before the chemo and a few months ago they upped my dosage and I felt much better.  I am so looking forward to the day when I can walk normally.  My last herceptin was June.  Exercising in the pool to strengthen my body .

Highlighted
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

Hi Ali49, yes I am at last but that's because I'm now on the thyroxine meds. A huge improvement in my mojo! I also found out yesterday at the GP, that the underactive thyroid has been caused by my immune system attacking the thyroid gland - probably due to the Herceptin/Radiotherapy! - Will know more when I see the Endrocologist in January!! My BP is still too high even though I'm on Rampiril 150/90 - so doubling my dose of that to 5mg!! Oh what joy! x
Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thanks jay68. I have had thyroid test but not diabetes so i will get checked
Are you feeling less tired now that you have finished? Xx
Highlighted
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

Hi Regina - sorry I missed your initial question. Unfortunately, there is no given timescale - we do all appear to be quite individual when it comes to this kind of situation. My last herceptin treatment was in June too! I still have trouble walking. I'm also still foggy in the head(!) - as I mentioned above in reply to Ali. My onc recommended getting tested for diabetes and thyroid. Mine came back with a very underactive thyroid. Been on meds for a week and already feeling a little more energetic! I do, however, still have chronic discomfort in my left foot (not sure if it's plantar fascilitis or nerve damage caused by chemo) but this does affect my mobility greatly. Once I get going, it's bearable but if I overdo it - it's just as bad.... hope this reply helps. x
Highlighted
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

Ali - just seen your message - might be worthwhile going to GP and if you haven't already - asked to be tested for diabetes and thyroid.  These are two problems which can occur from the treatment you have been on.  I had tests for both, thankfully diabetes is all clear but I do have a very underactive thyroid.  I've been placed on thyroxine meds and after a week on them I am starting to feel a little more "normal".  x

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

I posted on this site a question.  I still have not received an answer.  The question was how long will it be till my legs are stronger.  My last treatment of Herceptin was in June and I still have trouble walking.  I am not sure if I am missing something on this site.  I am still foggy in the head due to chemo so there might be an answer and i just can't find it. Please help

 

Highlighted
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi all, i finished chemo in January amd have now had 13 Herceptin injections. I also started letrozole in april and take it everyday. I actually feel wrecked!! My legs are heavy and stiff. When i stand up i have to wait a few seconds before i walk. Once i'm walking i'm ok. I have backache and now my shoulders feel like they are breaking and my kneck is stiff! I returned to my job as a teachet, full time in September and i am feeling so tired. I am gutted as i thought i would ne so much better by now! Xxx