Member
Posts: 311
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: 741
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: 741
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

Member
Posts: 311
Registered: ‎13-04-2016

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
Member
Posts: 206
Registered: ‎08-10-2016

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

Member
Posts: 206
Registered: ‎08-10-2016

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 

Member
Posts: 311
Registered: ‎13-04-2016

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

Member
Posts: 372
Registered: ‎13-03-2016

Re: Herceptin = 'Flippin awful, anyone else?

[ Edited ]

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?

Member
Posts: 644
Registered: ‎25-06-2016

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

Member
Posts: 206
Registered: ‎08-10-2016

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