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Why do they play down the side effects?

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Re: Why do they play down the side effects?

I am on Herceptin having had 4xFEC and 4xTax, rads and Arimidex. I didn't have any of my Herceptin with my chemo and only started it after the rads. I have just had my 4th infusion. Thankfully, apart from a little tiredness I do not seem to have had any side effects (so far)!

However I am surprised that some of you have mentioned not seeing your oncologists since before rads. Whilst on chemo and now Herceptin, I have seen mine every three weeks, on the day before treatment. I get weighed, then go in an see him for the prescription, and have the opportunity to discuss any problems.

xxx

pollym
Member

Re: Why do they play down the side effects?

hello all,

I just wanted to say that I actually rang the breast care nurse about my tiredness and feeling grotty last week. As I was also battling to get rid of a gum infection - not moved by 6 days on 2000mg of Amoxycillin I also mentioned that. She said I should get a blood test done in clinic. So I bowled up and told my nurse this and he said that he was positive nothing was wrong with my blood as Herceptin did not cause any problems with blood. Eventually he gave way and said I could have a blood test. Imagine his surprise when it came back with a low white cell count and low neutrophils of 1.5, about the same as many women on chemo! Mind you not so low as the 0.1 mine reached last year whilst on Taxotere!

My onc said that actually low white cell counts and neutrophils are a side effect of Herceptin but rare, obviously the nurse didnt know this. But I was thinking how do they know it is rare when many places dont even bother doing blood tests!!

So, my tiredness has probably been caused by my body working so hard to get rid of this damn infection... which by the way now seems to be getting better after a course of Metronidazole and some root work! Not pleasant but after 3 weekly cannulas for the last 15 months it doesnt seem so bad any more!

Anyhow, anyone who is constantly tired it may be worth getting a blood check, fortunately Im not anaemic although I am on the low side, but as my onc said it is possible to be anaemic on Herceptin.

Take care,

Polly x

RoadRunner
Member

Re: Why do they play down the side effects?

Margaret,

Although there are some side effects, I think most of us are fine on Herceptin. I had the runny nose, but since I started on Beconase for my annual hay fever, that has almost completely gone.

I get tired, but that could be the after effects of chemo, or more likely the lack of sleep from the tamoxifen hot flushes. I chat to the other ladies I meet on herceptin in the chemo suite, and no-one there has significant problems either.

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Re: Why do they play down the side effects?

I'm so glad this thread is here. I am off to see my onc tomorrow to discuss the start of my herceptin. I had the last of my chemo last wednesday and had planned to get back to work asap, before the herceptin started - but have now decided to wait until first 1 or 2 are out of the way just in case I can't cope. I have insurances paying out that don;t allow for me to 'attempt' to go back to work and fail - once I go back back to work they stop. I can't afford to take the risk that I will oly manage a week and be off sick again lol

Thanks ladies !
Margaret x

Anthi
Member

Re: Why do they play down the side effects?

Hello everyone
I've just finished my year of Herceptin and got through without too many side effects - painful arm and leg muscles sometimes, sudden bouts of tiredness, sinus headaches - and of course the runny, sometimes bleeding nose. My onc did warn me about the runny nose so it wasn't a surprise.

I also have to clear my nose every morning before I can breathe properly and I find the best way is to stand near a boiling kettle for a few minutes breathing in the steamy atmosphere. That seems to loosen things up nicely. Then I have my bath and hairwash and manage to blow my nose easily afterwards without it getting too sore.

Take care everyone.
Anthi x

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Re: Why do they play down the side effects?

Kate-have just read your profile, and I just wanted to send you my very best wishes. Your story is inspring, and underlines my long held belief that a positive attitude can achieve a huge amount.

Although in some respects I've been quite glad not to know too much in advance about potential side effects, the down side comes about when something unexpected happens. Although I'm quite a positive person by nature, if I have an unexpected pain,for example, my instinct is to think "has it spread further?". So my theory of not wanting too much information in advance does have a down side. Nonetheless, I wholeheartedly agree that the potential side effects shouldn't be played down. I'm finding the drugs hard, and although will happily take anything which might help, feel that the side effects shouldn't be trivialised.

cherub
Member

Re: Why do they play down the side effects?

I was lucky in that I was fine on Herceptin, but it did give me a runny nose at times and I found my hair growth was very slow. I also found whilst I did not put weight on with it, it was impossible to lose weight on it. My oncologist told me that when they trialled it here, all of the ladies on the trial complained of the runny nose.

I was had 3 Taxotere before Herceptin and started Herceptin with the 4th cycle. I was wiped out with chronic fatigue and joint pains on tax and spent pretty much 4 months in bed, culminating in a week in hospital isolation at the end. The oncologists told me I did well to get to the end of taxotere, some patients can't manage all the cycles as it's so hard.

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Re: Why do they play down the side effects?

ElaineD - Taxotere does make you lose your hair and causes awful joint pain and flu like symtoms. It was the worst chemo for side effects I've ever had and I'm now on my 5th different one - just blessed withe a very aggressive cancer so don't read my profile unless you are brave!
With herceptin, I've never seen anything about hairloss but as I said I know it also caused flulike symptoms, aching joints and bad nails.
Hope you feel better soon. It's really awful.
Naunmh - I'm not usually up at that time but had had 8mg dexamethasone for the gem/carbo chemo so was high as a kite and went to bed at 3am and was up at 7am. Taking 4mg for next 3 days so poor hubby will have to put up with a hyperspeed wife for the weekend and we're going away together without the children. Poor hubby!!!
I think the oncs don't either understand fully the side effects or downplay them not to frighten people.#Good luck to you all
Kate

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Re: Why do they play down the side effects?

Naunamh-I can't be 100% certain that herceptin is to blame for the hair loss, as I'm also on taxotere,which can also cause hair loss! It's very difficult-if not impossible to figure out which drug is causing which side effect.
Part of me was glad not to know too much about side effects in advance-I'm dealing with things when they arise, rather than worrying that they may happen. BUT-several health professionals, including a dear friend(who is not involved in my treatment), have all commented that herceptin is "easy, much less traumatic than chemo", and I'm not convinced that is necessarily the case.Guess I'll be in a better position to judge in a few months when the herceptin continues, and I'm at the end of the taxotere. But, the suggestion to me was that the risk of hair loss was high while on herceptin.

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Re: Why do they play down the side effects?

Hi Kate

Thankyou for all the information. I noted no waffle only knowledge and common sense.
You must be a nightbird like me posting so early in the morning.

Margaret

ForumMember
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Re: Why do they play down the side effects?

hi all
have been dipping in and out of this website for the last 18 months and have always found it fantastic .I have had 9 herceptins and have felt unwell all the way through so i thought i would have a quick look and see if anybody else has side effects which include tiredness ,aching and general flu like symptoms and i cannot believe how many of you feel the same as me,especially as my consultant said it was unusual to feel like this !! Sometimes i think its worse than the chemo !
Thanks to all of you .
Sarah
xx

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Re: Why do they play down the side effects?

hi
I've been on herceptin since oct 2005 - yes you are reading that correctly!!!
My first one gave me the full flu like symptoms after about the five hours and felt poorly the next day. #my second one felt as if I would be fluey but that feeling went after about an hour and some paracetamol.Since then I have trouble with a runny nosewhich lasts about a week but sinc #i've freaquently been on chemo or biphosphonates, it has been difficult to tell what side effect is caused by which,
2 of my friends had joint problems but they taking either tamoxifen or armidex and one had really bad joint pains continually and the other felt breathless despite heart function being OK..
I think as this is still fairly new widespread treatment, the oncs are still learning about side effects and so are reluctant to describe some as they are not sure if it is herceptin, or hormones or the aftershock of chemo treatment.
I always get thirsty herceptin days and my nails are very weak even when been off chemo.I've never come across anybody experiencing hair loss with herceptin and i have been to chemo clinic 1-3 weekly continuous;y since april 05 so have met lots of women having herceptin. 1 lady has had 100 doses of herceptin and has had no problems. My chest always feel tight the first evening as well.
I think they are still studying side effects from this drug and they should be listening and acting on these side effects.I do not know whether this is being done at all.
I think we are stuck between a rock and a hard place as we know her2+++ tumours are very aggressive and so herceptin is something that is known to greatly reduce this risk but they need to be honest or at least take seriously side effects we are reporting and acing on them.
Some people are fine and others are not but if you are having rads or hormonal treatment at the same time then it must be difficult to tell what is causing which side effects,
sorry seem to have waffled on. keep telling the oncs and hopefully, they will change what they say
good luck
Kate

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Re: Why do they play down the side effects?

Hi,
have just been told that after finishing chemo and radiotherapy I am advised to have Herceptin. My consultant was so put out when I enquired about side effects. He said that next time I come he would read me the list! I think that even when you ask medics to be upfront they much prefer to let things creep up on you, perhaps because you might refuse the treatment they consider necessary.
Elaine D and PollyM are you losing your hair again because of the Herceptin? This was what I wanted to find out from my oncologist.
Margaret

pollym
Member

Re: Why do they play down the side effects?

Heather,

You are not being a whine. In fact, I cannot believe you dont see your onc any more. I see mine every 3 months to get my echo cardiogram results. Like you though my mammogram did come in the post but it was within a week so not too bad. You should not be feeling like you are alone though, perhaps you should have a chat with your breast care nurse if you are worried about anything.

Take care,

Polly x

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Re: Why do they play down the side effects?

Hi there

Thank god for these threads, I had my 8th herceptin last Fri, 10 more to go. My follow up mamogram was yesterday for other breast and when I phoned breast clinic today to ask when I come to the breast clinic I was told I don't. ( I was told i get the results in the post). I said am I on my own now cos that what it feels like? So I quess I should be feeling better now, but like all of your good selves, I feel completed knackered (crusty nose , watery eyes aching bones) all the time, so good to realise it is normal. After , chemo, rads, herceptin & tamoifen, I'm exhausted , have not seen ny oncologist since before rads, apparently I'll see him for a 6 month check. Thats good cos I feel like I'm alone here. Sorry for being a whine.

Heather

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Re: Why do they play down the side effects?

Am so glad to read all your comments. I have also been shattered while on Herceptin. Have had 4 lots and now been pulled off with a low Muga score. Was devastated. Had loads of heart tests and some complications. Waiting for results. It is so frightening. Feel I should be getting my life back but im not.

Mary 2

Maggierg
Member

Re: Why do they play down the side effects?

Sue, I've had 15 herceptins now and throughout have suffered from the crusty nose you describe! I've found a dab of vaseline applied with cotton bud after clearing it at night tends to help. I also get the shortness of breath.

Otherwise I'm good. Just pleased will be finished in July. I've been trailing to hospital every three weeks since Jan 07 (chemo then Herceptin) plus all the other related appointments.

Maggie

ForumMember
Member

Re: Why do they play down the side effects?

Thank goodness for this thread. I thought I was the only one suffering from side effects.

Prior to starting Herceptin my morning routine was to get up, have a coffee then a wash and put on my make up. Now it's get up, have a coffee then clean my crusty nose .... This takes ages as I have to be really careful otherwise it bleeds. Even after applying make up I still end up with two red, sore looking nostrils.

As for shortness of breath ... tell me about it! My muga is normal yet I'm not! I used to be able to dash here there and everywhere, now I have to stop and catch my breath halfway through vacuuming or mowing the lawns. Even walking around town shopping (something I used to love) gets exhausting. I had a two month break from Herceptin in January and improved. Now I've started it again all the old symptoms are coming back..

Sue

pollym
Member

Re: Why do they play down the side effects?

oh yes, by the way, I think I must be really lucky because my oncologist is an absolute star. A young irish consultant in her 30s, so empathetic, so willing to listen to everything I am worried about. I was not surprised when one of the nurses told me that my oncs mother had died of breast cancer when she was only 15.... She is giving so much back and I am eternally grateful to her.

Polly x

pollym
Member

Re: Why do they play down the side effects?

hello everyone,

wow this thread has done me good... sorry if that sounds bad but I take comfort in the fact that being tired seem to be normal and not necessarily a marker of anything else. Ive had 13 of my 18 Herceptins and am now getting exhausted again, rather like I was towards the end of chemo. I suppose it is now over 14 months since my treatment started so that is part of it too... and the Tamoxifen and sleepless nights! Will I ever be normal again.

ElaineD, my hair is still here but my scalp, like yours, is very sore and tender, some days I can hardly brush it. I was beginning to worry I had some lasting damage to it after chemo but hopefully, it is something to do with the Herceptin.

If they were more upfront about side effects of Herceptin then I think we would all worry much less!

Polly x

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Re: Why do they play down the side effects?

I'm also finding herceptin surprisingly tough, although only just had my second dose a few days ago.
Exhaustion, being the worst, but tongue feels as if it's burned raw, and scalp is very sore and tender, with hair almost all completely gone. Am happy to persevere with any amount of side effects for the potential benefits I could get....but had no idea that it would be so hard.

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Re: Why do they play down the side effects?

Hi I had my first lot of herceptin on Monday 28th April and they kept me in for 6 hours, 2 hours later I was shivering, vomiting and had a high temp but they said that if i was going to have a reaction it would be in the first six hours, but not me got the fright of my life and haven't felt right since.

Best wishes

Angela X

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Re: Why do they play down the side effects?

Hi Everyone
Had my first loading dose of Herceptin last Tuesday and started radiotherapy last thursday so today it was my fourth radio and yesterday i went for my first breast cancer clinic follow up to see the surgeon that did my mastectomy last October. Had 6 chemo and each one was delayed except the first one because of infection and neutrapenia the last one my neutrefils were o.o16 the third day after coming out of hospital after my last chemo i emptied the medicine cupboard of everything to do with chemo and took it back to the chemist . I felt really positive and was told that i would be great on Herceptin and i could get on with my life so i was so excited after having such a rough chemo journey . Not complaining though i know i am lucky compared to a lot of people.
Since last Saturday i have been exhausted wheezing and so breathless after only walking from the car to the radiotherapy suite, the surgeon yesterday said i was expecting to much, i felt quite anxious yesterday so they checked me over after radio and my blood pressure was quite high and i never have high blood pressure. So i feel like you all that no one explained that Herceptin could be difficult. I was hoping to go for long walks with the dogs, shopping!! the realisation that i am ill has kicked in and i have been quite tearful which is very unlike me. Just wanted to talk to someone who understands and i do not want to worry my family as they all said now the chemo is over you will be fine and you will be able to do things and i feel as if i am letting them down.
Best wishes
Kate

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Re: Why do they play down the side effects?

roadrunner,
this is what i used to do. had a long list of questions to ask the doc and he sometimes went off the point but he never took the initative to fill me in with side effects or come to see me before chemo or when i had scan results, sometimes i got scan results over the phone! which i think it unacceptable.

this forum is great though....

H

xx

RoadRunner
Member

Re: Why do they play down the side effects?

ChristineMH - how true! I've found that my oncologist is really unhelpful if I go off his agenda. I've given up asking questions. I just turn up, do as I'm told and leave again. If I have any queries I find out for myself, either on this forum or just through google.

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Re: Why do they play down the side effects?

I think because they don't know what to do about the side effects like tiredness and oncologists like to deal with things they know how to solve.

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Re: Why do they play down the side effects?

I've had 3 Herceptins now and agree, the side affects do exist. I felt very positive and well before starting Herceptin and how now gone down hill. Feel knackered all the time, dreadful mood swings and anxiety, upset tum and my doctor has just signed me off work again, only did 2 weeks back at work. We all need a rant now and again, that's mine for today.

Guest user
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Why do they play down the side effects?

Hi all

I have my herceptin at home and had number 5 yesterday. Well yesterday my throat swelled up and had trouble swallowing, I took a piriton and now seem ok, think i may have to have next one at hospital.

I get nausea, diarrhoea and feel generally awful after my herceptin so why do they play down these side effects!!! I asked my nurse yesterday and she reeled off a list of side effects as long as my arm!!

I am grateful for this drug as I know its doing me good but i'm just so bloody fed up of it! I feel like i'm back on chemo!!!

Rant over

Love to all
Mel x x x