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: 310
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: 310
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: 310
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

 

Member
Posts: 644
Registered: ‎25-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

So will I 

x

Community Champion
Posts: 716
Registered: ‎26-06-2016

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.

Member
Posts: 644
Registered: ‎25-06-2016

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

 

Member
Posts: 70
Registered: ‎04-01-2017

Re: Herceptin = 'Flippin awful, anyone else?

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

 

Lou x

Community Champion
Posts: 716
Registered: ‎26-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

[ Edited ]

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. 

Member
Posts: 399
Registered: ‎14-09-2016

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.

Member
Posts: 25
Registered: ‎13-01-2017

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

Member
Posts: 399
Registered: ‎14-09-2016

Re: Herceptin = 'Flippin awful, anyone else?

[ Edited ]

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.

 

Member
Posts: 644
Registered: ‎25-06-2016

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

Member
Posts: 25
Registered: ‎13-01-2017

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 .

Member
Posts: 372
Registered: ‎13-03-2016

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