Member
Posts: 14
Registered: ‎10-12-2017

Re: Herceptin = 'Flippin awful, anyone else?

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
Member
Posts: 9
Registered: ‎02-09-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 14
Registered: ‎10-12-2017

Re: Herceptin = 'Flippin awful, anyone else?

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 

Member
Posts: 2
Registered: ‎05-09-2018

Re: Herceptin = 'Flippin awful, anyone else?

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.

Member
Posts: 1,409
Registered: ‎24-03-2017

Re: Herceptin = 'Flippin awful, anyone else?

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.

Member
Posts: 1
Registered: ‎04-09-2018

Re: Herceptin = 'Flippin awful, anyone else?

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. 

Member
Posts: 7
Registered: ‎10-10-2017

Re: Herceptin = 'Flippin awful, anyone else?

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.

Member
Posts: 9
Registered: ‎02-09-2018

Re: Herceptin = 'Flippin awful, anyone else?

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.

Member
Posts: 266
Registered: ‎22-05-2018

Re: Herceptin = 'Flippin awful, anyone else?

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. 💪😊
Member
Posts: 16
Registered: ‎02-01-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 1,409
Registered: ‎24-03-2017

Re: Herceptin = 'Flippin awful, anyone else?

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

 

Member
Posts: 266
Registered: ‎22-05-2018

Re: Herceptin = 'Flippin awful, anyone else?

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
Member
Posts: 13
Registered: ‎22-02-2018

Re: Herceptin = 'Flippin awful, anyone else?

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!!!
Member
Posts: 16
Registered: ‎02-01-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

 

Member
Posts: 1,409
Registered: ‎24-03-2017

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 16
Registered: ‎02-01-2018

Re: Herceptin = 'Flippin awful, anyone else?

Chemo and Tamoxifen do the same thing too x

Member
Posts: 16
Registered: ‎02-01-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 1
Registered: ‎15-08-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 2
Registered: ‎12-08-2018

Re: Herceptin = 'Flippin awful, anyone else?

I should also note that Herceptin has thrown me in to full blown menopause with severe hot flashes! Yippee for me :-(
Member
Posts: 2
Registered: ‎12-08-2018

Re: Herceptin = 'Flippin awful, anyone else?

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