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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Member
Posts: 1,379
Registered: ‎24-03-2017

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 3
Registered: ‎13-07-2018

Re: Herceptin = 'Flippin awful, anyone else?

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. 

Member
Posts: 3
Registered: ‎19-07-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 3
Registered: ‎19-07-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 7
Registered: ‎12-07-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 1,171
Registered: ‎17-09-2016

Re: Herceptin = 'Flippin awful, anyone else?

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
Member
Posts: 31
Registered: ‎11-05-2018

Re: Herceptin = 'Flippin awful, anyone else?

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.

Member
Posts: 2
Registered: ‎21-01-2018

Re: Herceptin = 'Flippin awful, anyone else?

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

Member
Posts: 14
Registered: ‎10-12-2017

Re: Herceptin = 'Flippin awful, anyone else?

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 

Member
Posts: 2
Registered: ‎21-01-2018

Re: Herceptin = 'Flippin awful, anyone else?

Hello, after going through chemo, mastectomy and radiotherapy I am now having herceptin every three weeks as I am her2pos. Herceptin messes with my emotions, I have been tracking it and about 5-7 days after my injection I get very depressed angry and tearful, it arrives without warning and then goes, but when I am experiencing it it is so real. If anyone else is feeling this I send you a hug you are not alone. 

Member
Posts: 23
Registered: ‎12-05-2017

Re: Herceptin = 'Flippin awful, anyone else?

Hi vintage. Just wanted an update on your pain your experiencing in your hands. I'm also on herceptin and tamoxifen and I have had 12 herceptin so far. My fingers get the most pain really and I wondered if you are taking anything to help with the aches and pains at all. Hope your feeling much better now. Xx

Highlighted
Member
Posts: 31
Registered: ‎19-04-2017

Re: Herceptin = 'Flippin awful, anyone else?

This is just awful, I am so sorry you have had such a terrible time - I hope things have changed for the better by now, but if not, let it rip and complain all you like, it's bottling it up that does the damage. Everyne has a different reaction to these powerful drugs, so it is hard for anyone no matter how expert to give a defuitive response - follow your own instincts.

Member
Posts: 206
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi ladies!

Blueash those probiotics were mentioned on a healthy eating programme I saw recently and seem to be the in thing now. My 86 year old dad takes them ... he is in great shape...helping me paint the house..and loves getting up a ladder...he used to be a famous footballer in Ireland...

 

Runningfree...I first started running with my dad in the 1980's when he out ran me after 5 minutes!!

Well done for improving your time...you are really getting yourself in shape....I am inspired by you and am going to start running seriously again....I am going to do a 5k when I get myself together...when I go back to teaching I will be taking the running group again so I have to get motivated.

 

As for SE's....as I have already said...after H nbr 9 I was floored for nearly a week...which was very tough to deal with since I had had no real problems for a few months....but I am now painting the house and on day 4 of a full days painting schedule...all I can see is white walls in front of me...the strange thing is I feel just like I felt on chemo...totally wrecked and about to collapse in a heap...but this time I am actually doing hard physical work instead of only walking round the kitchen!!!

 

As I keep saying ladies .....keep moving....it is the way to get strong enough to battle these SE's.

 

I love hearing your updates and how you are dealing with the Herceptin problems thrown at us.

As some of you have said ... we are expected to be back to normal now we are not on active chemo or rads treatment and we know that our bodies take a very long time to readjust to not being poisoned every few weeks....

 

I am feeling good today .... outside all day... just enjoying nature and listening to the birds going berserk all day.  There is a blue tits nest above our sitting room and just watching them zooming in and out every few minutes is so lovely.   New lives just above our settee!!

 

Think positive.  Carpe diem!  My daughter has a cushion on her bed which says 'Positive vibes only'

 

Aine x 

 

 

Community Champion
Posts: 741
Registered: ‎26-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Well Hazel I do ache a bit but it is not dreadful - nothing that a couple of Neurofen won't sort out. BUT I still take the claritin that I was taking for the bone pain when we had the injections. That seems so long ago now! I just had number 13 and luckily my fingers and toes are OK no more tingling and full movement.

 

I just feel stiff all over and move as if I am 90 but perhaps we are expecting too much - they have been putting some heavy duty poisons into our system to kill of the bad stuff and it must take a while to recover from. I think we are spoilt - we want to be back as we were before all of this when we should be grateful that we are still here to moan xxx

 

Member
Posts: 311
Registered: ‎13-04-2016

Re: Herceptin = 'Flippin awful, anyone else?

Aine - Delighted to share bowel habits with you! Smiley LOL

I finished chemo in September, had rads in October last year. So, 7 months on from chemo I expected more improvement with regard to the neuropathy. I'm hoping for some improvement after the herceptin is finished but I'm not overally optimistic to be honest. Hope you're not too tired today after your painting. I'm planning to gut the house tomorrow but I think I'll limit it to 2 hours max, problem is I tend to do housework less often then really gut it when I do it, to the point of sweating etc. Also, once I start I find it hard to stop. I must be strict with myself though, 2 hours it definitely is Smiley Frustrated Oh, I've had 13 herceptin so far.

 

Running Free - Well done on running 5K! Good for you. I'm sick of explaining herceptin to people full stop! As far as everyone is concerned my active treatment is well behind me and I should be back to normal now. I give up, mostly I just smile (grimace) and say "Yeah, I'm fine thanks".

 

Blueash, you seem to be getting off lightly with the herceptin side effects, lucky you.

 

Take care everyone. xx

Member
Posts: 644
Registered: ‎25-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Ps

it is also very difficult to tell yourself you are overdoing things... I never learn!

x

Member
Posts: 644
Registered: ‎25-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi again ladies,

i do think the SE of herceptin are cumulative, I used to feel tired etc for a few days after the jab but towards the end it sort of blurred!

and I get sick of people downplaying it like we've just had a flu jab or something...

but keep going the last few go much quicker, I suppose it's because you are on the countdown!

i ran a 5 k last week, over a minute quicker than I've managed in about 9 months, and I reckon it would've been even quicker if I hadn't been laid low with flu just as I completed the herceptin. So I remain convinced.

cath

x

 

Community Champion
Posts: 741
Registered: ‎26-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Get yourselves some probiotics. I take this:

https://www.culturelle.com/

 

every morning as soon as I wake up. I probably don't need it now because it has been months since my last chemo but I feel great taking it and so I order another box when I am running low.