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Herceptin = 'Flippin awful, anyone else?

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Re: Herceptin = 'Flippin awful, anyone else?

Struggling hard with the joint pain from my first dose of Herceptin.

Can anyone give me any tips on how to relieve the joint pain please  Have tried both paracetamol and codeine  with little effect. 

Does your body tolerate it the more you have? I deal well with pain generally but this is a challenge and half. 

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Re: Herceptin = 'Flippin awful, anyone else?

I finished my Herceptin In February and aside from the odd joint ache I can safely say that I am finally beginning to feel better. The muscles in my legs do feel weak but that is partly because I haven’t been as active as I used to be. I have managed to walk my dog everyday but it has been quite an effort. However, I have started cycling again and I didn’t feel exhausted as I have previously. I know everyone reacts differently, but the nurses told me it takes 6-7 months to clear Herceptin from the body so you may have another 3 months to go. The bottom line is that you do feel better as each month ticks by but I suddenly felt loads better when I reached 6 months post-Herceptin. I am finally hopeful that all those joint aches will disappear - fingers crossed.

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Re: Herceptin = 'Flippin awful, anyone else?

I have been off Herceptin since June of 2018.  Can anyone give me a timeframe of when my legs will be stronger.  I just went to go to the store and couldn't because my legs were so week.

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Re: Herceptin = 'Flippin awful, anyone else?

Thank you Jay68 for your kind words, I’d be lost without this forum.
Yorkie I’m looking to that tiny glint of light at the end of the treatment tunnel and staying very grateful for these wonder-drugs. 💪😊
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Re: Herceptin = 'Flippin awful, anyone else?

Everyone gets very different side effects with Herceptin.  Although i did not suffer from sickness after my chemo had finished and i was on Herceptin, the nurses told me that it was a common side effect for people to feel sick when they are on it for the whole time.  As for tiredness, i got more tired and achey with each dose.  The nurses explained that this can happen to some people.   We are unique in the way it effects us but i am pleased to report that they do go away a little while after finishing. Its not nice at the time but the Herceptin gives us the opportunity to live to tell the tale. Be grateful and bare with it x

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Re: Herceptin = 'Flippin awful, anyone else?

Hi JacqB - sorry to hear you're feeling so down and don't worry about whinging on here - it's the best place to do it! 

 

I finished all 18 lots of Herceptin in June of this year - so I'm about 10 weeks out of treatment.  

 

I think the sickness and tiredness you are experiencing are more to do with the chemo than the herceptin.  Chemo takes over 3 months to leave your body.  The damage it does to healthy cells and nerves take a very long time to heal.

 

Herceptin certainly is a wonder drug to the majority of us.  We are grateful for it's discovery yet it's difficult to know what side effects it carries when it's placed with the chemotherapy.

 

For me, once the chemo days were 3 months behind me, a few days after the herceptin injection I noticed I suffered with nasal congestion and a runny nose, aching leg muscles and a general feeling of tiredness (which lasted 2/3 days).  Towards the end of the 18 sessions, I can say that  lethargy and general lack of enthusiasm gradually increased.  Unfortunately for me, Herceptin also began to affect my heart - causing minor heart failure for which I was put on Ramipril, thankfully they worked on helping the heart to heal and I didn't suffer any delays in treatment.  At my final  onc appointment, she said my heart was back to 60% and  I could stop them.  However, my GP has advised I stay on the minimum dose of 1.25mg as my blood pressure is still a little on the high side - once this drops I will be able to come off them completely.

 

So as I say, don't be sorry for whinging on here - it's a great place to do it!  There is always someone who can reassure you - someone who has been through exactly what you are going through and they are the best people to help and offer advice.  Personally, I love this forum and it's discussion threads.   I am so grateful I was pointed in the direction of Breast Cancer Care - I am always looking for ways to fundraise for them now as a means of paying them back! 

 

I hope your experiences with herceptin do improve and like me and many others will get through the 18 lots and then go back to a "normal" life.  Take care and good luck xx

 

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Re: Herceptin = 'Flippin awful, anyone else?

Hi all 👋
I’m feeling very down about herceptin at the moment. For some reason I thought that the side effects would not be anything like chemo, but I’ve felt so sick and very tired for over a week. It was my first Herceptin only dose last week and the thought of feeling like this for a year is making me very sad. I know it’s a wonderful drug and I’m lucky to have access to it, but the prospect of months of side effects is going to take some getting used to. Sorry for having a whinge but I don’t want to go on about this with my nearest and dearest so here is where I vent!
Best wishes to all
Jacq x
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Re: Herceptin = 'Flippin awful, anyone else?

I’m on my second last herceptin injection this wednesday thank God. I have found ive had acid and wind and upper abdominal aches all the way through even though doctors say it’s not from herceptin. Did anyone else have this? I’m hoping they will subside after treatment ends!!!
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Re: Herceptin = 'Flippin awful, anyone else?

If it helps anyone to know, the nurses told me that the effects of Herceptin can last in your body for up to 7 months after your last dose.  Although I got better gradually over the months following my last dose, 7 months out was like flicking a switch. I feel very different.  The only symptoms I have now are due to the Tamoxifen.  Hot flushes, tiredness and leg muscle cramps.  I am grateful to have it though and I manage the side effects which really at the end of the day, it can't be nearly as bad as having chemo. Just feel grateful to be alive. Hang in there. When you are in it you feel as if it's for ever and you will never get right.......you do. Just don't be hard on yourself and take time out. Xx

 

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Re: Herceptin = 'Flippin awful, anyone else?

Hi Yorkie, thank you for posting your positive posts!  I'm 10 weeks out of Herceptin and I do feel a little less lethargic - my recent heart scan has shown my heart is back to 60% so that means a reduction in Ramipril -I'm sure my legs are less achey - it's difficult to ascertain at the moment as 5 weeks ago I suffered a nasty fall which not only resulted in a broken toe on one foot - but also the other leg suffered severe ligament damage to knee, shin and ankle!  Then I had a nasty collision with an out of control dog last week - and more ligament damage to the foot which was already injured!!!  Another 6-8 weeks and hopefully these injuries will be a lot better and I'll be pain free and able (hopefully) to be a lot more mobile!  I need to get my exercise levels up to improve my blood pressure and get rid of some of the excess pounds I've put on just recently...!  

 

I do, however, have severe pain and discomfort in one of my feet (on the sole and heel) - it's almost identical to plantar fascilitis (but I'm sure has been caused by Docetaxol chemo).

 

I've just had blood tests, as recommended by my onc for glucose (diabetes) and thyroid - apparently two areas which can be affected by all the meds I've been on!  Results 6 September.  Fingers crossed all ok and no more medications...!

 

At the end of the day though - I'm not complaining - I'm delighted Herceptin was discovered and although it affected by heart and my overall energy, these were temporary - the fact I'm alive, enjoying life and having fun are far more important! x

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Re: Herceptin = 'Flippin awful, anyone else?

Chemo and Tamoxifen do the same thing too x

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Re: Herceptin = 'Flippin awful, anyone else?

Thought i would message to try and encourage those who are struggling with Herceptin.  I am now 7 months out and feeling so much better. After stopping, i gradually felt better weekly.  I have had some horrible pains in my muscles and bones over my treatment.  Abraxane chemotherapy is very similar to Taxol chemo.  It is just coated in albumin to make it easier for your body to tolerate.  Looking back on my treatment i know that the extreme pains in my legs was the Abraxane. This is a common side effect of this type of chemo and all taxane based ones. The Herceptin affected my muscles more and made me feel stiff. It kicked in 3 days after treatment then got easier just in time for the next 3 week dose again. Sadly as the herceptin doses went on i got more tired and my leg muscles got worse but it was not like the horrible ache from the chemo which went about 8 weeks after my last dose. By the 18th dose of Herceptin i could fall asleep standing up and the muscle ache was awful.  Do bear with it though as it is a life changing drug.  Find ways to cope with it.  A hot bath before bed, putting a pillow under your knees when you are in bed and most importantly, keep walking and drinking lots of water.  Today the side effects i have now are from Tamoxifen which are muscle cramps and tiredness.  I have just changed to having my dose on an evening which is much better for the tiredness.  Walking eases out the muscles too.

It seems a long time to hold on and go through the Herceptin but you really do get better when you stop, honest. Keep at it.Good luck everyone x

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Re: Herceptin = 'Flippin awful, anyone else?

getting my first radiation treatment to day, my second herceptin infusion Monday.   Experiencing some shoulder and upper thigh discomfort with herceptin, mild diarrhea......definitely hot flashing....already had menopause....ugh

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Re: Herceptin = 'Flippin awful, anyone else?

I should also note that Herceptin has thrown me in to full blown menopause with severe hot flashes! Yippee for me 😞
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Re: Herceptin = 'Flippin awful, anyone else?

 
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Re: Herceptin = 'Flippin awful, anyone else?

Hi Abigailemily - I received herceptin first alongside Docetaxol chemo (every 3 weeks) I also had Pertumzab and they were all administered by IV.  I had four lots in that way.  I then had surgery and continued having the Herceptin  injections every three weeks in the thigh.  I had a total of 18 - 4IV and 14 injections.  I finished on 24 June this year and I'm now beginning to feel less lethargic, not aching and generally feeling well.  x

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Re: Herceptin = 'Flippin awful, anyone else?

Hi. Just waiting for my results and looking into Herceptin  . Can anyone let me know how they receive their herceptin, drip or injection and how often you have it and how the it was decided whether you had injection or drip.  Thanks. Abi. 

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Re: Herceptin = 'Flippin awful, anyone else?

Hallo

 

I'm in the same boat.

 

Still busy with radiation  -  last day will be 27th July.  Had my 7th herceptin last week  -  still 10 to go.

 

Besides being emotional at times, and joint pains, I also gained weight.

 

Strongs

 

Erina

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Re: Herceptin = 'Flippin awful, anyone else?

Hallo Sue

 

My naam is Erina.  Ek kry ook Herceptin en is seker daarvan dat dit die "joint" pyn veroorsaak.  Dit maak my ook geweldig vet!!

 

Sterkte

Erina

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Re: Herceptin = 'Flippin awful, anyone else?

Hi.

 

I have not had too many problems with Herceptin so far, but I postponed taking Letrozole until now and that is already giving me side effects after just four days. It may be the Tamoxifen giving you joint pain and not the Herceptin. It's good to have somewhere you can have a moan now and then.

 

Good luck

Sue

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Re: Herceptin = 'Flippin awful, anyone else?

Hi Dizzytalons. I was exactly like you ther first few days of letrozole and was going to come off it as i felt so bad - i could barely walk and felt so utterly down!! I was encouraged to persevere and 3 months on i still.have aching feet and weak knees but not as bad as they were after those first few days. I find walking helps and keeping active. I take loratadine antihistamine each day and also high5zero rehydration tablets, which you mix with 750mls of water and drink. These are helping me to not be dehydrated which can make the aches worse.

I have had 11 of 18 herceptin now and do get the upset tummies and complete knackerdness when i just have to give in and rest but on the whole i am doing ok and ploughing on!

Today is my first day back at work for a year!

Hope you feel better soon x
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Re: Herceptin = 'Flippin awful, anyone else?

Hi eclair, I too am her at positive. I have just had my 3rd herceptin,on letrozol also. So I have a,way to go yet. Coping with treatment except a few pains so I have been lucky. Sorry to hear a few ladies have suffered whilst on herceptin. Positive tbought s to all.

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Re: Herceptin = 'Flippin awful, anyone else?

Thankyou, for the hug , you know I have also been suffering from sore feet and put it down to the hot weather, never made the connection. I hope you are improving, it is all so slow and frustrating, but I have started swimming again and that is lovely.x

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Re: Herceptin = 'Flippin awful, anyone else?

Hi Eeclare. 

I too am HER2 and ER2 positive. IDC, Grade 3, had lumpcectomy in November 2017 with wide local excision. Started chemo in January 2018 and finished radiotherapy in May. I had my 9th Herceptin yesterday got 9 more to go. Today the soles of my feet are really sore, and throbbing, the only way i can explain it is it's like walking on pins. My knees are painful too, I also get very emotional at times, it comes and goes and I get upset over the silliest of things. My BCN told me this is normal after finishing treatment. I'm on Letrozole for 10 years so i'm not sure if this is contributing to the rollercoaster of emotions, but I'm sending you a hug back from someone who understands what your feeling .xx 

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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. 

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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

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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.

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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 

 

 

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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

 

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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

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Re: Herceptin = 'Flippin awful, anyone else?

Ps

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

x

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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

 

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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.

 

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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

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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

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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

 

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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

 

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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

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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
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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

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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
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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)

 

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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...

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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...

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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
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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

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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 . 

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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

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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

 

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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..