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Herceptin = 'Flippin awful, anyone else?

Eeclare
Member

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. 

Kala
Member

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

maggie aitken
Member

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.

Aine
Member

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 

 

 

blueash
Community Champion

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

 

haz25a
Member

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

Runningfree
Member

Re: Herceptin = 'Flippin awful, anyone else?

Ps

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

x

Runningfree
Member

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

 

blueash
Community Champion

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.

 

Aine
Member

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

haz25a
Member

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

Aine
Member

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

 

Runningfree
Member

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

 

On a diversion
Member

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

haz25a
Member

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
On a diversion
Member

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

Vintage
Member

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
Aine
Member

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)

 

blueash
Community Champion

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...

blueash
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

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...

haz25a
Member

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
Aine
Member

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

Linda.Clark
Member

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 . 

haz25a
Member

Re: Herceptin = 'Flippin awful, anyone else?

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

Aine
Member

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

 

Aine
Member

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..

On a diversion
Member

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 

haz25a
Member

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
Aine
Member

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

haz25a
Member

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

Aine
Member

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

 

Runningfree
Member

Re: Herceptin = 'Flippin awful, anyone else?

So will I 

x

blueash
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

I had massive water retention due to the chemo. My eyes were always streaming, my feet, legs, fingers, wrists, under my chin and tummy were all bloated and puffy. It took about 6 months to go and I am still  heavier that I would like to be and don't over eat. I am not a runner but I excercise for about an hour or so on most days.

 

I will take note and see if the weight shifts once the Herceptin is finished and report back here.

Runningfree
Member

Re: Herceptin = 'Flippin awful, anyone else?

Lou

weight has possibly increased by 2 of 3 pounds but I like to run and have done so throughout

that said I have a thicker waist I am sorry to say

hoping this is a temporary thing..... Am also on tamoxifen

 

lindeloo

dont let that nurse intimidate you......can you speak with your BCN ? Or your oncologist? You have enough on your plate.

ive found a site' medicines.org.uk' it says 2 to 5 mins and has loads of info

cath

x

 

Lou Green
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Cath, just wondering if you gained weight or had water retention during the injections?

 

Lou x

blueash
Community Champion

Re: Herceptin = 'Flippin awful, anyone else?

They always set a timer with my injection and take about 4 minutes each time and it has never stung me. I sometimes get a small bruise but that is when they catch a blood vessel and they cannot see those to avoid them. I have had 11 injections so far.

 

I would report that nurse. If you know that it is supposed to take 3 to 5 minutes then she must know as well. 

OldDawn63
Member

Re: Herceptin = 'Flippin awful, anyone else?

Lindeloo - I don't think that is any excuse. They are under a lot of pressure at the hospital I go to but it doesn't stop them giving you the time you need. You are sometimes kept waiting, and some patients grumble about that - including me! - but I'd rather wait if it means each person is given enough time to be treated properly.

Lindieloo
Member

Re: Herceptin = 'Flippin awful, anyone else?

When I said to the nurse , I thought you should inject slowly for 3-5 minutes , she just said , o well and walked off , they don't seem to have the time at the Lincolnshire hospital I go to , it's very worrying x

OldDawn63
Member

Re: Herceptin = 'Flippin awful, anyone else?

Lindieloo - I have had 5 injections so far (the first 3 with chemotherapy were IV so I've had 8/18 in total). The injections are given very slowly and steadily, and usually there is no pain at all. I am not aware of them timing it but I would estimate they take around 3-4 minutes.

 

Haz25a and OAD - I have had fatigue but can't really say it is Herceptin related. It was at its worst during the latter stages of chemotherapy and for a few weeks after. Since I started exercising it has improved a lot, though I am just coming to the end of my radiotherapy and this is making me tired again. I have slight neuropathy in my fingers but it isn't a serious problem at the moment. Aine is right though, you do have to force yourself to exercise. Don't try to do too much too soon, it is easier if you start slowly and gently and build up.

 

Runningfree
Member

Re: Herceptin = 'Flippin awful, anyone else?

Lindiloo

i have just finished herceptin after 18 jabs

The girls ALWAYS set a timer for 5 minutes

There are a couple of threads somewhere on the forum with lots of variations but I think 5 mins is what the licence recommended ( and always in the thigh if given sub cutaneously)

all the very best with your treatment ( I must say it has gone by pretty quickly for me!)

cath

x

Lindieloo
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hope you don't mind me butting in but I had my 2nd herceptin injection on Monday and they put the whole injection in my thigh in 42 seconds as I was counting and had the huge bee like sting for the whole time, can I ask how long others have theirs in their leg for .

On a diversion
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Hazel and Aine,

 

Really interesting reading your comments, thank you for sharing.

 

My taste is still affected but I have been told that it's due to the taxotere and might be long term. It never occurs to me that it could be PN.

 

 

Take care xx

haz25a
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Aine,

Interesting that you also have neuropathy on the tip of your tongue. It doesn't affect my taster, it's just like a mouth ulcer or as if I've burnt my tongue. It comes and goes. Some days my hands and feet are better than others. My Onc says that's a good sign, but as you say, we'll see.

A fatigue workshop sounds good. I've signed up for the Moving Forward course, it starts at the end of this month. I've also signed up for a Stress Management course at Cancer Support Scotland which is on my hospital campus. I've also got a Maggie's centre at the campus so I'll have a look at what's on there.

Macmillan have also teamed up with my local council and NHS to offer a gentle exercise/walking programme so I really have no excuse with so many things available to me on my doorstep!

Just need to kick my lazy butt into gear and sign up for more things.

You're absolutely right, I NEED to force myself. Thanks for the kick up the arse that I badly needed. 🙂

Take care.

Hazel.xx
Aine
Member

Re: Herceptin = 'Flippin awful, anyone else?

...forgot to say that the yoga classes at my hospital were just great.  This is how I started to exercise during chemo and omg I found them soooo relaxing and therapeutic.  I do the exercises every night before bed and they really help with winding me down.  Try this and see if it helps you sleep.  'Do yoga with me' on Youtube has been recommended to me.

xxx

Aine
Member

Re: Herceptin = 'Flippin awful, anyone else?

Hi Haz and the rest of you.  Hope you all had a good day!

 

Haz....I still have neuropathy too (7 Herc done) and yes still on the tip of my tongue which affects my sense of taste a good bit.  Nothing tastes like it used to.  Hands and feet still very annoying too.  My Onc said 50pc of people get better and the other half - well it doesn't cure completely.  We will have to wait and see I suppose.

 

Someone told me that putting your feet up helps with the swelling but I am sure you know that.

 

I have just started a Fatigue Workshop course (4 thursdays).  Week one was a good laugh.  We got an aromatherapy stick to sniff when we are tired - smells lovely.  We did a bit of relaxation.  Some are suffering more than others I realised.  I actually nearly fell asleep during the talk and had to go out and stretch in the corridor!!  The advice was to try to manage the fatigue by healthy eating, exercise and planning the day so you limit the big highs and bad lows.  Next class is about healthy eating I think.

If your hospital offers this course you should think about going.  I really enjoy meeting others going through the same as me.

 

I felt as weak as you up until No 6.  I have forced myself to exercise over the past few weeks and I am totally convinced this is how I have turned a corner.  I started by taking the dog for a short walk everyday.  I walked slowly and yes the stuffy runny nose and running eyes drove me crazy but I still forced myself to walk.  It really helps with the sleepless nights.

 

Now the weather is better I have started gardening.  I do a bit and sit down for a half hour rest and do more.  I  take as many breaks as I need BUT I keep going.  I have gone back to the gym and zumba classes.

So.....you HAVE to force yourself to exercise!!  You will get better more quickly!!  It got rid of my very achy legs.  It cheered me up.  It is a win win situation.

Try it tomorrow - start easy.  Keep going .

 

Be good to yourselves ladies!!

Hugs Aine x 

haz25a
Member

Re: Herceptin = 'Flippin awful, anyone else?

Congratulations Running Free! I can't wait to finish. If everything goes to plan and I don't miss any I should be finished by the end of August.

 

Hello Aine and OAD, nice to hear from you.

 

I've had 11 herceptin now (I think), still getting them by infusion.

 

OAD, my muscles are still a bit achey in legs and hips but not quite as bad as when I was on the injection. Fingers and toes (and tip of tongue??) still got neuropathy. Ankles, feet, lower legs swelling up more. Feel like I've put on a bit of weight, probably fluid retention. Fatigue is getting worse, I go to bed, toss and turn for ages but feel like I could sleep during the day no problem. Really need to start some gentle exercise, walking or yoga maybe but I'm just so physically and mentally exhausted all the time. If I go out one day, I'm wiped out the next day.

 

Keep in touch.

 

Best Wishes

 

Hazel.xx

On a diversion
Member

Re: Herceptin = 'Flippin awful, anyone else?

Many congratulations Runningfree.

 

I have ankle and hip/pelvic pain as well as worsening peripheral neuropathy. Seems to take a while for my muscles to get going. Anyone else?

Runningfree
Member

Re: Herceptin = 'Flippin awful, anyone else?

Thanks Aine

yes kept running although sometimes it has been really hard

but it definitely helps your mind

find the aches,cramps ,sore feet etc tend to go whilst I'm running

well done to you too. Keep going

cath

x

Aine
Member

Re: Herceptin = 'Flippin awful, anyone else?

Congratulations Runningfree!!  What a milestone!!!

So you clearly kept running on through sore feet and cramps!

I have started running on the treadmill at the gym.  5 mins jogging 2 mins walking for 3k last thursday.  Oh it felt great.  It really helped with my leg cramps which have stopped since then. Numb toes too but it didnt stop me.

 

Keep it up!!!!

Aine x 

Runningfree
Member

Re: Herceptin = 'Flippin awful, anyone else?

Ladies

today I had my 18th ( and hopefully last!) herceptin. I have felt a lot better on the last few... It's probably psychological but who cares...

still have some SE ( feet,cramps ) but we will see.

take care

cath