Member
Posts: 206
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: 644
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: 314
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: 184
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: 206
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: 768
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: 768
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: 314
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: 206
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

Member
Posts: 1
Registered: ‎07-05-2017

Re: Herceptin = 'Flippin awful, anyone else?

Hello All,

It is so nice to hear that there are other people like me going through this terrible ordeal. My diagnoses is Her 2 positive. Following  my surgery last summer, I had 6 rounds of chemo, the last 3 with herceptin (plus a further 15 herceptin at 3 weekly intervals), followed by 23 treatments of radiotherapy,  which finished at the end of January .  It was during my radiotherapy , that I notice that my left shoulder was becoming stiff and painful . At the time ,  I thought it was odd , as my radiotherapy was on the rightside.  I've had regular echo cardio grams and a bone density scan , which were all normal . My oncologist then started my on Letrozole and calci chew tablets. Within weeks, my muscle and joint pain became a lot worse. This was in my hips , knees , ankles , fingers and both shoulders being the worst.  I changed to a different manufacturer as suggested on the forum,  and still it was no change . At my route OPA with my oncologist , I mentioned the point and muscle pain and was changed to Exemestane , being told that herceptin had little or no side effects . The pain then got so bad , 10/10 one night that I managed to get an emergency appointment in the morning to see the oncologist, who then told me to stop taking the Exemastane  and start Tamoxifen in 2 weeks , to let the drug get out of my system . However , the pain still didn't subside and I was crying so much at my last 3 weekly Herceptin injection , refusing to have the injection , that the chemo nurse got the on call oncologist to see me, who said it wasnt likely to be the injections, but prescribed Tramadol and codeine , for the pain and encoraged  me to have the injection . After taking these regular for around a week , the pain was no better , still 10/10 , my lovely GP stated me on Etoricoxib (NSAID). This has helped a little . My dilemma now is , I've now been off work for 11 months , now on half pay and being pressurised to return to work . My pain in now around a 4-5 at rest, with my left and right shoulder pain still being 10/10 at times. My husband , has to help my undress and cut up my food . My head is in a constant state of fuzziness due to the opioids . I am a nurse , working on a very busy surgical ward. This weekend I have gone cold turkey , only taking the NSAID. But, the extensive pain has returned , with me again struggling to climb the stairs and walking at a very slow pace . I am due to have No 11 Herceptin injection tomorrow , which I would like to decline . I haven't yet started on the Tamoxifen . I need to get my life back , I want to/need to go back to work.  I feel well and truly stuck. Any ideas or suggestions please ? Thank you for listening . 

Member
Posts: 314
Registered: ‎13-04-2016

Re: Herceptin = 'Flippin awful, anyone else?

[ Edited ]

Hi all,

 

OAD, Heart scan seemed ok, I'm due herceptin number 13 this Friday so I'll find out before then if anything is amiss. My big toe is still sore but I don't think it's infected. See podiatrist on the 16th May. I'm very sensitive to meds, I have a bad stomach, acid reflux and IBS anyway so antibiotics are not very kind to my stomach, some are better than others. They also seem to "interfere" with my antidepressants, regardless of what antibiotic or antidepressant I am on at the time? How's your back? Mine's still a bit sore. How many herceptin have you had now? I've got my first mammogram and appointment with surgeon on Tuesday morning, I'm a bit nervous. The Moving Forward course is good, nice to meet up with people in the same situation Next week's topics are chemo brain and fatigue. They asked if anyone was interested in attending a Fear of Recurrence course so I've signed up for that in July. Got my hair dyed platinum blonde! Lol! I've always wanted to be that colour but my dark, dry, frizzy hair could never have stood the bleaching process, it's pretty knackered now, even though it's short. I've not quite got the trendy pixie cut I was hoping for but hey ho, it's hair. Really tempted to dye it pastel pink or purple. Think it's because I'll be 49 next month, must be having a mid life crisis (again!) Smiley LOL

 

Take care. xx

 

Aine, I've started to walk a bit more, even with my sore toe. My legs were a bit sore last night so I must have walked briskly and long enough to do some good. Smiley LOL Cut the grass today, took a break halfway through, it's a medium-large size lawn. I used to take my dog to the cemetery too, it's a 2 min walk from my house and I used to take her to the really old part where I could safely let her off the lead for a good run, she was a greyhound.

 

Best Wishes

 

Hazel.x

Member
Posts: 206
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Forgot to say keep pushing the exercising!!!

I am forcing myself to exercise...gardening or walking the dog or walking...

I am also doing my yoga exercises every day for say half an hour or so.

I am completely convinced that this is what is the most beneficial thing I am doing now......

 

get up and move!!!!

it is minimising my SE's from Herceptin.....

this lovely weather is perfect for getting out and walking....

 

...get up and out and why not try those apps that track your steps....my OH does that and he is so delighted with himself!!!!

I am a bit sceptical and just get out and go for a walk...!!!

OMG  it isnt rocket surgery!!!!

just go for a walk!!!

doesnt matter where you go ....  I take the dog out and go round the local cemetery!!!! And am delighted I am not on one of the tombstones! Smiley Happy

 

Carpe diem

Aine x  big hugs to those who are struggling...I struggled terribly for 6 months and still have the odd bout of trauma

 

Member
Posts: 206
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

hello all!!

 

Yes the courses are definitely worthwhile.

Mostly for the support you get from meeting people in the same situation as yourself which you dont normally encounter when you are at your hospital appointments I feel.

I loved my fatigue workshop course - meeting people from all walks of life who had a similar story to tell as me....we enjoyed ourselves so much and had a great laugh.

It is great to feel you are not alone and not a complete oddball with no hair who is reduced to wearing a dead bird on your head!!!!!

Aine x

Carpe diem....make the most of today..

Member
Posts: 372
Registered: ‎13-03-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hiya Hazel,

 

Hope the heart scan goes well. I had all sort of problems with infected ingrowing toenails during the winter. Also have problems with antibiotics. I think some of us are much more sensitive to all the medications and treatments! 

 

Really interesting about the change in car too. I still have the back ache etc and am wondering about this. 

 

Totally agree with increasing the exercise slowly and not being hard on ourselves. 

 

Take care xx 

Member
Posts: 314
Registered: ‎13-04-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Aine

Sorry for the late reply. Thanks for your good wishes. My back is much better. My bad back is due to working with horses for years, back breaking stuff.

Strangely enough, I have just got a new car yesterday and noticed how much more comfortable the seat is. It's a Ford Focus to replace my 12 year Vauxhall Astra but it has lumber support sports seats and is much more comfortable. Sadly though, I think the all these years of mucking out, lifting horses feet, bales of hay and heavy feedbags etc. have done permanent damage to my back.

I had my 12th herceptin treatment, still by infusion last Friday. SE's not too bad. Got my echo heart scan next Tuesday.

My fingernails are not too bad, still got the neuropathy though, but my toenails are awful, especially my big toes, all yellow and discoloured, they look like an old man's! GP thinks I have ingrowing toenail so in addition to seeing the podiatrist at my local cancer charity, I also have an appointment to see one on the NHS for a second opinion. Infection in toe has cleared despite having to stop my antibiotics early due to severe upset stomach. It's still a bit sore though but nothing like it was.

I'm glad you're enjoying the Fatigue workshop. I went to my first Moving Forward course this morning. We had a talk from a Breast Cancer care nurse and a talk from a nutritionist. It was good to meet up with other women in the same situation although obviously not everyone's treatment plan was the same. There was about 10-12 of us and two of the other women are also on herceptin. I'm looking forward to the other three sessions. At some point someone from Macmillan's "Move More" is coming to talk to us about exercise. In Glasgow, Macmillan have teamed up with the NHS to offer different exercise classes, free gym membership, walking groups etc for people who are recovering from cancer. There is also a Pink Ribbon Walk in Glasgow on 17th June, 5, 10 or 20 miles but I don't think I could even manage the 5 miles, maybe next year.

My plan is to build up my exercise and take short breaks like yourself. That's what we were talking about at the course today, just do a little at a time and don't be too hard on yourself.

Take care

Hazel.x
Member
Posts: 206
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Haz - Aw sorry to hear you have a sore toe and back!

That can be very painful - I have had sore backs and I know how awful it is.

 

By the way - my persistent back problems disappeared when I got a new car!

I had been driving a 17 year old white Audi (which I loved!) but eventually the family refused to get into it and I had to give in and change it!!  My very boring Toyota Avensis is a great car and only after a year did I realise that it cured my back problem.  And I was the Queen of sore backs!!

 

Also ......my physio did some back massage called the Bowen Technique...it helped enormously.  Nothing too alternative just massage but I would highly recommend asking for it.

 

Herceptin 9 was ok and I seem to be getting no side effects.

You are much further on than me Haz.  How are your SEs now?

 

I have disgusting black peeling nails (keep dark nail polish on) and numb toes but I think the feeling is coming back in some toes.

 

Hands are improving a bit more.

 

I am exercising as much as  I can - do a bit and take a break and then find something active to do again.  I force myself to take only short breaks (half hour) and I really think this is the key to getting better.

 

My appetite is still poor - nothing tastes like it used to.  Is anyone else like this?

 

The Fatigue Workshop is good fun - you should all try it.  Plenty of laughs.  Talks from physios, social workers, therapists, nutritionists, etc and lots of good advice on coping with fatigue.

 

Be good to yourselves ladies!

Aine x

Member
Posts: 314
Registered: ‎13-04-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Aine,

 

Eh, exercising not going too well. Smiley Embarassed BUT, I do have a really good excuse at the moment as I have a rather painful "whitlow" on my big toe AND I've also got a sore back so walking at all is rather painful just now. I saw GP today and have an antibiotic cream and a good old fashioned poultic to try before a course of antibiotics.

 

I'm due my 12th herceptin on Friday so will check with the nurses tomorrow that it's still ok to have it with this whitlow.

 

Great to hear you're getting out and about walking in the countryside. There is no doubt it is beneficial, as long as you don't overdo it. Don't think there's much of chance of me overdoing it mind you, even when my toe and back are better. Small baby steps for me. I actually had a plan to set my phone time for 5 mins medium pace, 5 mins fast pace, then 5 mins medium pace again. I just need to put my plan into action and build it up!

 

Hope everything goes ok tomorrow? with your herceptin.

 

Best Wishes

 

Hazel.xx

Member
Posts: 206
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Haz

Hows the exercising going?????

 

I have done a lot of walking over the Easter weekend with my family.  Nearly killed me to force myself to keep up with them but once you are out there its ok and I really impressed myself that I could keep going for ages.   Boy does it put you in a good mood to be out enjoying the birds and trees.

 

Last weeks Fatigue workshop was about food - very interesting - we all brought in a wee snack and shared them out.

The course leaders made us put the food our mouth, not chew it for a while, not swallow for ages and therefore really savoured the taste.  It was really interesting.

 

They said it takes your body 20 minutes to register that you are no longer hungry - so eat sloooowly.  Good advice.

 

Next Herceptin in 2 days time.

My SEs are diminishing,  Hands are a lot better.  Feet still numb though.  

Diarrhoea a little better.

The exercising is helping a lot......

 

Aine x