Herceptin = 'Flippin awful, anyone else?

[dizzytalons]

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

[Bibi]

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 

[Thrplummer]

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.

[Barkley]

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.

[Ali49]

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!

[JacqB]

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 😞

[Ros]

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

[blueash]

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

[Stacey123]

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 !!!

[Jay68]

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

[Regina Dallin]

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

[Regina Dallin]

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. 

[Jay68]

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

[Regina Dallin]

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 .

[Jay68]

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

[Ali49]

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

[Jay68]

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

[Jay68]

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

[Regina Dallin]

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

[Ali49]

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

[Hough1]

Hi ya

Just had my 4th Herceptin injection today and told her about the symptoms.  She said as I am worried to call the breast cancer specialist nurse.  I dont start my radiotheraphy until 19th September..    I had a bad night last night.  It's just so annoying as always been so healthy and fit - lots of running etc. Went to the gym last weekend as thought exercise would help.

Thanks for replying though.  

As I am HER2 + I am not on any other hormone tablets so can't be anything else.

[dizzytalons]

Hi
I'm sorry I can't answer your question..I still have six more to go and my leg muscles are stiff, sore and weak especially my knees..I find it interesting to read some of the advice from people that have finished treatment post.. everyone's recovery is different..maybe a short walk every day might help.. wishing you well.x

[Regina Dallin]

How long will it take till my legs are strong again?.  I have 12 rounds of Herceptin and my last one was June.

[dizzytalons]

Hi Hough1

I'm on Herceptin number 12 and I have had joint and muscle pain from my first and is getting worse each one i have, I'm also on Letrozole which causes same side effects so i have been in quite a bit of pain and like you been doing walking to keep my legs moving.. I take Paracetamol mostly but if it gets any worse I will need to take something stronger.. I guess everyone is different and side effects vary from person to person.. my Onchologist registrar told me that Herceptin doesn't have side effects !!!. I would give them a call to see what they can do to help. Don't suffer alone. Wishing you all the best.x 

[Hough1]

Hi ya

I think I am going mad.  I had clear margins and clear nodes 4 weeks ago after a successful lumpectomy.  My ribs on both side and hip now are very achey and have pain in muscles especially knees its so bad lately I am worried it could be mets or something.  My 4th herceptin injection is due on Friday by nurse said no one else is having side effects.   I finished 8 chemos 12 weeks ago which including 4 Herception infusions too.  I am struggling to sleep and back at work now.  Doing exercise to try and make it help.  On pain killers do.  Should I make a call with breast specialist nurse.  I start radiotheraphy on 19th September.  Not sure what to do and it's getting me down.

[Jay68]

Hi bozlap

I'm sorry to read you are struggling with joint pain from the first dose of Herceptin.

Out of curiosity, is this your first herceptin with chemo or by injection?

I finished 18 cycles of Herceptin in June this year and although I did suffer a little joint pain (especially ankles) at certain times, it wasn't unbearable - it seemed to affect my muscles more.  I'm therefore unable to assist you personally but I do know some ladies were taking antihistamines to help with the joint pain - I can't remember which brand in particular was recommended - but if you do a search on here I'm sure you'll find a thread.

Good luck and hope the pains subside.

[bozlap]

Struggling hard with the joint pain from my first dose of Herceptin.

Can anyone give me any tips on how to relieve the joint pain please  Have tried both paracetamol and codeine  with little effect. 

Does your body tolerate it the more you have? I deal well with pain generally but this is a challenge and half. 

[Shonagh]

I finished my Herceptin In February and aside from the odd joint ache I can safely say that I am finally beginning to feel better. The muscles in my legs do feel weak but that is partly because I haven’t been as active as I used to be. I have managed to walk my dog everyday but it has been quite an effort. However, I have started cycling again and I didn’t feel exhausted as I have previously. I know everyone reacts differently, but the nurses told me it takes 6-7 months to clear Herceptin from the body so you may have another 3 months to go. The bottom line is that you do feel better as each month ticks by but I suddenly felt loads better when I reached 6 months post-Herceptin. I am finally hopeful that all those joint aches will disappear - fingers crossed.

[Regina Dallin]

I have been off Herceptin since June of 2018.  Can anyone give me a timeframe of when my legs will be stronger.  I just went to go to the store and couldn't because my legs were so week.

[JacqB]

Thank you Jay68 for your kind words, I’d be lost without this forum.
Yorkie I’m looking to that tiny glint of light at the end of the treatment tunnel and staying very grateful for these wonder-drugs. 💪😊

[Yorkie]

Everyone gets very different side effects with Herceptin.  Although i did not suffer from sickness after my chemo had finished and i was on Herceptin, the nurses told me that it was a common side effect for people to feel sick when they are on it for the whole time.  As for tiredness, i got more tired and achey with each dose.  The nurses explained that this can happen to some people.   We are unique in the way it effects us but i am pleased to report that they do go away a little while after finishing. Its not nice at the time but the Herceptin gives us the opportunity to live to tell the tale. Be grateful and bare with it x

[Jay68]

Hi JacqB - sorry to hear you're feeling so down and don't worry about whinging on here - it's the best place to do it! 

I finished all 18 lots of Herceptin in June of this year - so I'm about 10 weeks out of treatment.  

I think the sickness and tiredness you are experiencing are more to do with the chemo than the herceptin.  Chemo takes over 3 months to leave your body.  The damage it does to healthy cells and nerves take a very long time to heal.

Herceptin certainly is a wonder drug to the majority of us.  We are grateful for it's discovery yet it's difficult to know what side effects it carries when it's placed with the chemotherapy.

For me, once the chemo days were 3 months behind me, a few days after the herceptin injection I noticed I suffered with nasal congestion and a runny nose, aching leg muscles and a general feeling of tiredness (which lasted 2/3 days).  Towards the end of the 18 sessions, I can say that  lethargy and general lack of enthusiasm gradually increased.  Unfortunately for me, Herceptin also began to affect my heart - causing minor heart failure for which I was put on Ramipril, thankfully they worked on helping the heart to heal and I didn't suffer any delays in treatment.  At my final  onc appointment, she said my heart was back to 60% and  I could stop them.  However, my GP has advised I stay on the minimum dose of 1.25mg as my blood pressure is still a little on the high side - once this drops I will be able to come off them completely.

So as I say, don't be sorry for whinging on here - it's a great place to do it!  There is always someone who can reassure you - someone who has been through exactly what you are going through and they are the best people to help and offer advice.  Personally, I love this forum and it's discussion threads.   I am so grateful I was pointed in the direction of Breast Cancer Care - I am always looking for ways to fundraise for them now as a means of paying them back! 

I hope your experiences with herceptin do improve and like me and many others will get through the 18 lots and then go back to a "normal" life.  Take care and good luck xx

[JacqB]

Hi all 👋
I’m feeling very down about herceptin at the moment. For some reason I thought that the side effects would not be anything like chemo, but I’ve felt so sick and very tired for over a week. It was my first Herceptin only dose last week and the thought of feeling like this for a year is making me very sad. I know it’s a wonderful drug and I’m lucky to have access to it, but the prospect of months of side effects is going to take some getting used to. Sorry for having a whinge but I don’t want to go on about this with my nearest and dearest so here is where I vent!
Best wishes to all
Jacq x

[elliemc]

I’m on my second last herceptin injection this wednesday thank God. I have found ive had acid and wind and upper abdominal aches all the way through even though doctors say it’s not from herceptin. Did anyone else have this? I’m hoping they will subside after treatment ends!!!

[Yorkie]

If it helps anyone to know, the nurses told me that the effects of Herceptin can last in your body for up to 7 months after your last dose.  Although I got better gradually over the months following my last dose, 7 months out was like flicking a switch. I feel very different.  The only symptoms I have now are due to the Tamoxifen.  Hot flushes, tiredness and leg muscle cramps.  I am grateful to have it though and I manage the side effects which really at the end of the day, it can't be nearly as bad as having chemo. Just feel grateful to be alive. Hang in there. When you are in it you feel as if it's for ever and you will never get right.......you do. Just don't be hard on yourself and take time out. Xx

[Jay68]

Hi Yorkie, thank you for posting your positive posts!  I'm 10 weeks out of Herceptin and I do feel a little less lethargic - my recent heart scan has shown my heart is back to 60% so that means a reduction in Ramipril -I'm sure my legs are less achey - it's difficult to ascertain at the moment as 5 weeks ago I suffered a nasty fall which not only resulted in a broken toe on one foot - but also the other leg suffered severe ligament damage to knee, shin and ankle!  Then I had a nasty collision with an out of control dog last week - and more ligament damage to the foot which was already injured!!!  Another 6-8 weeks and hopefully these injuries will be a lot better and I'll be pain free and able (hopefully) to be a lot more mobile!  I need to get my exercise levels up to improve my blood pressure and get rid of some of the excess pounds I've put on just recently...!  

I do, however, have severe pain and discomfort in one of my feet (on the sole and heel) - it's almost identical to plantar fascilitis (but I'm sure has been caused by Docetaxol chemo).

I've just had blood tests, as recommended by my onc for glucose (diabetes) and thyroid - apparently two areas which can be affected by all the meds I've been on!  Results 6 September.  Fingers crossed all ok and no more medications...!

At the end of the day though - I'm not complaining - I'm delighted Herceptin was discovered and although it affected by heart and my overall energy, these were temporary - the fact I'm alive, enjoying life and having fun are far more important! x

[Yorkie]

Chemo and Tamoxifen do the same thing too x

[Yorkie]

Thought i would message to try and encourage those who are struggling with Herceptin.  I am now 7 months out and feeling so much better. After stopping, i gradually felt better weekly.  I have had some horrible pains in my muscles and bones over my treatment.  Abraxane chemotherapy is very similar to Taxol chemo.  It is just coated in albumin to make it easier for your body to tolerate.  Looking back on my treatment i know that the extreme pains in my legs was the Abraxane. This is a common side effect of this type of chemo and all taxane based ones. The Herceptin affected my muscles more and made me feel stiff. It kicked in 3 days after treatment then got easier just in time for the next 3 week dose again. Sadly as the herceptin doses went on i got more tired and my leg muscles got worse but it was not like the horrible ache from the chemo which went about 8 weeks after my last dose. By the 18th dose of Herceptin i could fall asleep standing up and the muscle ache was awful.  Do bear with it though as it is a life changing drug.  Find ways to cope with it.  A hot bath before bed, putting a pillow under your knees when you are in bed and most importantly, keep walking and drinking lots of water.  Today the side effects i have now are from Tamoxifen which are muscle cramps and tiredness.  I have just changed to having my dose on an evening which is much better for the tiredness.  Walking eases out the muscles too.

It seems a long time to hold on and go through the Herceptin but you really do get better when you stop, honest. Keep at it.Good luck everyone x

[senior1949]

getting my first radiation treatment to day, my second herceptin infusion Monday.   Experiencing some shoulder and upper thigh discomfort with herceptin, mild diarrhea......definitely hot flashing....already had menopause....ugh

[Cherie]

I should also note that Herceptin has thrown me in to full blown menopause with severe hot flashes! Yippee for me 😞

[Jay68]

Hi Abigailemily - I received herceptin first alongside Docetaxol chemo (every 3 weeks) I also had Pertumzab and they were all administered by IV.  I had four lots in that way.  I then had surgery and continued having the Herceptin  injections every three weeks in the thigh.  I had a total of 18 - 4IV and 14 injections.  I finished on 24 June this year and I'm now beginning to feel less lethargic, not aching and generally feeling well.  x

[Abigailemily]

Hi. Just waiting for my results and looking into Herceptin  . Can anyone let me know how they receive their herceptin, drip or injection and how often you have it and how the it was decided whether you had injection or drip.  Thanks. Abi. 

[ERINA]

Hallo

I'm in the same boat.

Still busy with radiation  -  last day will be 27th July.  Had my 7th herceptin last week  -  still 10 to go.

Besides being emotional at times, and joint pains, I also gained weight.

Strongs

Erina

[ERINA]

Hallo Sue

My naam is Erina.  Ek kry ook Herceptin en is seker daarvan dat dit die "joint" pyn veroorsaak.  Dit maak my ook geweldig vet!!

Sterkte

Erina

[Oh Suzannah]

Hi.

I have not had too many problems with Herceptin so far, but I postponed taking Letrozole until now and that is already giving me side effects after just four days. It may be the Tamoxifen giving you joint pain and not the Herceptin. It's good to have somewhere you can have a moan now and then.

Good luck

Sue

[Ali49]

Hi Dizzytalons. I was exactly like you ther first few days of letrozole and was going to come off it as i felt so bad - i could barely walk and felt so utterly down!! I was encouraged to persevere and 3 months on i still.have aching feet and weak knees but not as bad as they were after those first few days. I find walking helps and keeping active. I take loratadine antihistamine each day and also high5zero rehydration tablets, which you mix with 750mls of water and drink. These are helping me to not be dehydrated which can make the aches worse.

I have had 11 of 18 herceptin now and do get the upset tummies and complete knackerdness when i just have to give in and rest but on the whole i am doing ok and ploughing on!

Today is my first day back at work for a year!

Hope you feel better soon x

[Biker]

Hi eclair, I too am her at positive. I have just had my 3rd herceptin,on letrozol also. So I have a,way to go yet. Coping with treatment except a few pains so I have been lucky. Sorry to hear a few ladies have suffered whilst on herceptin. Positive tbought s to all.

[Eeclare]

Thankyou, for the hug , you know I have also been suffering from sore feet and put it down to the hot weather, never made the connection. I hope you are improving, it is all so slow and frustrating, but I have started swimming again and that is lovely.x

[dizzytalons]

Hi Eeclare. 

I too am HER2 and ER2 positive. IDC, Grade 3, had lumpcectomy in November 2017 with wide local excision. Started chemo in January 2018 and finished radiotherapy in May. I had my 9th Herceptin yesterday got 9 more to go. Today the soles of my feet are really sore, and throbbing, the only way i can explain it is it's like walking on pins. My knees are painful too, I also get very emotional at times, it comes and goes and I get upset over the silliest of things. My BCN told me this is normal after finishing treatment. I'm on Letrozole for 10 years so i'm not sure if this is contributing to the rollercoaster of emotions, but I'm sending you a hug back from someone who understands what your feeling .xx