Highlighted
Member
Posts: 29
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: 203
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: 687
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: 310
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: 631
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: 631
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: 687
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.

 

Member
Posts: 203
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi ladies!!!

 

Haz....

delighted to hear you have diarrhoea as much as meSmiley Very Happy

Now I know its a normal SE and wont worry as much about it....but it is very annoying.  I dont take anything for it...my stomach cant take any more medication.  It eases off in the afternoon.  I eat a light dinner at 6 and dont eat later.

 

Just so as I can compare with you...how many Herceptin have you had and how long is it since you finished chemo and rad.  I had last chemo on Jan 2nd and no rads.  Just done H nbr 9.

 

My fingers are improving.  Sensations are getting better.  I was told my others that after around 4 months the fingers improve but the toes take longer.  Dont worry they will improve.  I almost always wear trainers and I think that helps.

 

Thanks for the advice re ESA.  I will see what the response is to my form and take it from there.  I will certainly contact Macmillan for advice....I go there every week for a fantastic yoga class anyway so they all know me by now!

 

I know how you are feeling after realising you have done too much this week.  Our bodies are great at letting us know that arent they!  The fatigue workshop I just did told us to Prioritize, Plan and Prepare.  In other words not to do too much and to accept any offers of help.  I find that taking short naps or dozes and then getting up and active is working for me.

 

Today I started painting the outside of the house (never buy a white house!)

It is addictive and really hard to stop....omg I am going to suffer tomorrow....!

 

Hugs from Aine xx

Member
Posts: 310
Registered: ‎13-04-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi everyone,

 

Aine - I'm so glad you posted this although I'm sorry to hear that you had a rough week and are suffering side effects. I'm feeling bloody awful today and it's my own fault. I've done far too much this week, particularly on Wednesday and even more so yesterday and I am paying the price big time today and will probably do so for the next few days. Like you, I also have an iffy stomach and have diarrhoea most mornings and up too 2 or 3 times a day. I'm sick to the back teeth of my numb fingers and toes and to be honest I've resigned myself to the fact that they will probably never recover from the chemo damage. As for your ESA, I would definitely recommend getting the help of Macmillan, you have probably sent the form away by now and I don't want to dishearten you but by the sounds of your "help" from you GP, it may well be unsuccessful. However, many are and then are successful after appeal. I strongly recommend using Macmillan if this is the case, they have a dedicated benefits team, I'm sure there will be one near you, if not it's worth travelling as they are very experienced in this field. Have you also though about applying for PIP? Again, please do not fill out the form without any help as it is likely to be unsuccessful without the help of a specialised organisation such as Macmillan. I have not used Macmillan as prior to my cancer diagnosis I was already receiving ESA and DLA for my mental health conditions but I have heard great things about them. They have a dedicated benefits team in my local cancer hospital.

 

Running Free - Congratulations on finishing your herceptin! A huge thanks for your post and for giving us hope that the side effects will start to disappear soon after we finish. I really needed to hear that right now. Hope you continue to improve as the weeks go by.

 

OAD - I completely agree with you regarding the downplaying of herceptin side effects and I am finding that they are cumulative. I was speaking to a woman in my Moving Forward course only yesterday who has had 17 herceptin and she was saying exactly the same thing. I too have learned the hard way and from now on will learn from this and will listen to by body and learn to pace myself. I was warned to pace myself but I'm impatient and not very good at following rules so it's my own fault but lesson learned!

 

Best wishes to you all and please keep in touch.

 

Love Hazel. xx

Member
Posts: 203
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi everyone!

Great to hear you have finished Herceptin Runningfree...keep telling us how much you are improving so we can cheer up!!

 

After me boasting about exercising and feeling great...just had H Nbr 9 last Friday and have had a rough week....very tired and cant focus on anything.

So I cant presume that Im over the worst yet.....I am pushing myself to keep active but it has been very hard this week.  I fall asleep after breakfast and cant get moving until the afternoon.  The evenings are good and I get out for a walk or garden.

Today a week later I am feeling a good bit better.  Fingers crossed.

Anyone else cant cope in the mornings but better in the evenings?

 

I still have a very iffy stomach.  At my evening class yesterday I was so embarassed at my stomach making such loud rumbling noises.  I get such unbelievable wind after dinner every evening....Im presuming its a normal SE.  Is it?  I have no appetite since chemo and keep my diet very simple.  I have diarrhoea every morning.  Anyone else have this delightful complaint?

 

I am claiming ESA also.  it is £72 per week.  There is a stupid 16 page form to send in which my GP had to complete a page of.  He had to comment on 'any reason why the person should not be able to work'.

He wrote 'no info supplied by patient but normally able to return to work 2-3 months post chemo'.

I was so disgusted.  He doesnt even know me.  No way could I return to teaching yet.  I wouldnt last a full day.  I returned the form anyway but wouldnt be surprised if there is more fuss about it.

 

I still have numb toes.  Thankfully my fingers are normal now but the nails are black, peeling and yuk.  Black cherry nail varnish helps!

 

Well ladies we are getting there....the SEs are still with us and some of you are having a rougher time than me.  Look after yourselves and treat yourselves.

 

Hugs from Aine xx

 

Member
Posts: 631
Registered: ‎25-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi ladies

had my 18th and final herceptin on the 10th April.

5 weeks on I am definitely losing some of the symptoms... I am less stiff and I am feeling less fatigued. Do still get joint pains though and bad leg cramps( on tamoxifen )

i am a keen runner and am a little quicker than I have been over the past few months.

little things and I know we are all different but just wanted to let you know I have been feeling better quite soon after finishing herceptin

take care

cath

 

Member
Posts: 372
Registered: ‎13-03-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Hazel,

 

Thank you for your reply.

 

I've had 14 now! Your course sounds good and I like the idea of the exercise group. I did join a walking group but most of the walks are too long for me.  I have had to learn the hard way that if I overdo it I will suffer. I think people tend to downplay the side effects of herceptin but they're very real.

 

We are the same age, like you I have hot flushes which I assumed was menopause but now I'm thinking it's the treatment. Wasn't expecting periods to return so might just double check and see what the doctor says about it all. 

 

Thanks again,

OAD

Member
Posts: 310
Registered: ‎13-04-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi OAD

Hope you're well. How many herceptin treatments have you had now again? I had my 13th yesterday.

I am attending a Moving Forward course and last week we had someone from Macmillan come to tell us about their Move More programme in Glasgow. I think I might have mentioned this before but there is a collaboration between Macmillan, NHS and my local council for people who have been diagnosed with cancer. My memory fails me (yet again) but I think it's called the Cancer Journey, it's about not facing cancer alone. They run gentle exercise classes, organised walks etc. run by specialist people who are trained to help people with cancer start exercising again. They have a class near me so I'm going to enquire this week and sign up. I am really suffering quite badly from fatigue at the moment and it seems the more I try and walk or exercise the worse I feel. :-/ I said this to the Macmillan nurse and she said I could be doing too much at a time, so I definitely agree with you on listening to your body in terms of how much exercise you do.

I will be 49 next month, so was 47 when diagnosed. My periods stopped during chemo which finished in September 2016 and (fingers crossed) my periods have not yet returned. I'm not on hormone therapy either. I'm getting a lot of hot flushes which I assumed was due to the menopause but it could be the herceptin.

Take care

Hazel.x
Member
Posts: 372
Registered: ‎13-03-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Linda,

 

I agree with Vintage, everyone is different, I find some days I can hardly move due to pain and stiffness in my joints. I decided the best thing for me is to do a short walk (even if it's only 5-10 minutes) everyday as that is good for heart health but I don't always manage to, I think we have to listen to our bodies. 

 

Completely different question, has anyone else found their periods have returned? I'm late 40s so assumed they wouldn't but am thinking I may be having period pain too!  I'm not on hormone therapy so this is  possible I guess. 

 

OAD

Member
Posts: 182
Registered: ‎09-05-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Linda
I have just had herceptin 8 this week . I am also on tamoxifen. I feel like the pains in my feet legs knees and hands are getting worse. Not sure what exactly is the culprit. My nurse thinks it's still side effects of the chemo doxatel. I feel like a 90 year old. I am 47. If I crouch down I cannot get back up again without help. I am trying to keep active but not noticed any improvements as yet. I have also been off work for 12 months now. But it is still early days really after all the surgery and treatments you need to give your self time to recover. Everyone is different so take your time . Your health comes first.
Not sure if you have contacted macmillan. They can help you apply for benifets such as esa and pip. Well worth at least looking into and can take the pressure off you returning too early.
Take care
V xx
Member
Posts: 203
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Linda

so sorry that you are having such a terrible time and of course it must be getting you down.  That is excellent advice from Blueash - follow it up.

 

If it is of any help - I was suffering terrible leg pains up to Herceptin Nbr6.  I told the Onc I wanted to reduce the dose.  She said not possible and that the pains would definitely ease off.  I agreed to continue.

 

The big change I made was to seriously up my exercising.  I couldnt get up the stairs without a struggle and couldnt sit on the sofa without having to stretch and move constantly to ease the aches.

I worked out that easy walking for say 15 mins at a time really helped.  I started yoga in the Macmillan centre.  I do the stretching exercises every evening while watching tv.  I cant tell you how much the exercising has helped.  I built up the walking time and just walked slowly if I was tired and a bit faster if I could push myself.  I am convinced that you have to keep the circulation going.  I walk twice a day now with the dog.  Of course I am very tired at times but take a short rest and force myself to get up and do something active (gardening, housework (yuk), washing the car).

 

Im not trying to preach to you and please take this with all my best wishes!  Try my approach and see if it helps a bit.  I was really at the end of my tether with all these SEs and couldnt face another 6 months of constant pain.  But I really do feel so much better and the only thing that has changed is I keep moving - even if I cant face it.

 

The Fatigue Workshop I just did was great to mix with people from all walks of life who are struggling to get over this hurdle.  Could you enroll in one?

 

Please dont despair...we have an inner strength now after what we have been through and you can find a way of getting over this

Aine x

 

The leg pains are gone and it is definitely due to exercise. (Herc Nbr 10 this week)

 

Community Champion
Posts: 687
Registered: ‎26-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Linda,

 

Did you know that some places only give you 3 Herceptin injections? I think it is Australia, New Zealand and Finland.

 

Also there is trial going on right now giving only 9 injections in this country. If you are really having an awful time you might want to find out it you have had enough and it would be safe to stop.

 

 Details here:

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-comparing-6-months-and-12...

Community Champion
Posts: 687
Registered: ‎26-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

[ Edited ]

Hello Linda,

 

Welcome, I am in the same situation as Hazel in that Herceptin only (already had surgery, chemo and rads) and while my aches and pains are not dreadful they are there!

 

I can sort them out with a couple of Neurofen and I don't suffer regularly, but I am aware of being less mobile and feeling aches.

 

I take high dose omega 3 fish oil because I read that they were good for inflammation:

https://omegavia.com/fish-oil-benefits/

 

it might just be the sales blurb but I have felt better since taking them, That link is for an American brand but I buy these from Amazon:

https://www.amazon.co.uk/Minami-Nutrition-MorEPA-Platinum-Softgels/dp/B00BQHUZWO/ref=pd_sim_121_2?_e...

Member
Posts: 310
Registered: ‎13-04-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Linda

Sorry to hear that you're in so much pain, that sound truly awful. I'm not on any hormone treatment as I tested negative for ER. I certainly have some joint pain on the herceptin but nothing like what you are describing. Could it perhaps be the hormone treatment that is causing the pain?

Have you checked out any of the posts from the women on various hormone treatments to see if any of them are experiencing the same level of pain?

I would speak to the nurses tomorrow at your herceptin appointment and explain just how bad things are. It's getting a balance of treatment versus quality of life. You've had 10 herceptin which might be enough?? I'm not a medical professional but it sound like it could be the hormone treatment that's causing your pain??

Good luck

Hazel.x
Member
Posts: 203
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hazel...good for you!

Keep forcing yourself to exercise every day.  Today I went to the beach for a walk with the dog - very tiring but worth it....I had to sleep for 45 mins when I got home but got up again and washed the car....

 

Keep moving...it is the way to get better more quickly...

Aine x