Am new to this site but thought I would let you know about my experiance. I have had chemo and am now on herceptin. I am on my 16th cycle of herceptin and don’t seem to have any side effects. I have secondery breast cancer and am stable at the moment. I am told I will stay on it while it appears that it is helping me.
Has anyone tried chemo sensitivity testing? Am thinking of going down this route.
Hugs to all who are going through what I am. Xxx
Hi Midge,
I’m new on here but funnily enough, I started a thread on herceptin as I was experiencing symptoms that I was told ‘are nothing to do with herceptin’.
So it’s been quite reassuring to see that some of you ladies are experiencing the same things.
I finished my chemo in March and radiotherapy in May and am just on herceptin at the moment(cycle 6ish of 18)
My symptoms are;
Pains in ribs, joints (esp ankles, neck and knees),muscles
Hayfever/allergy symptoms
Acid reflux
Hot flushes/sweats
Just feeling unwell (but not able to describe it really)
And an unhappy stomach!
These seem to be quite common symptoms,whatever site you look at but I was wondering if anyone else was suffering with any of the above symptoms or any ‘mental’/emotional issues as well?
I seem quite confused, unable to make decisions,angry and generally a bit odd at times! I have definitely felt more like this since being on the drug.
I know this could be symptomatic of what one is going through generally but it doesn’t quite feel like that to me…
Maybe someone could help as after going through this over the last 18 months, I’m feeling a little more worried now than I was at the beginning. Especially when you’re told it’s nothing to do with treatment.
I would be very interested to know whether anyone else was having emotional/brain foggy issues too.
xxx
Have posted on your other thread re my side effects of herceptin
Hi Molly
Glad you have found the thread reassuring. I suffered with panic attacks on Fec, non on Tax, but occasionally again on Herceptin. I can get very angry, but put that down to chemo pause. I definatley sympathise with with the just not feeling well part of it. This has gotten worse the longer I have been on herceptin. I have cycle 16 on Monday and am Really looking forward to getting to 18.
While I know we are lucky to have it ( and cross my fingers it is working )and it is much easier than chemo, onc’s should not dismiss the side effects and I hope women keep telling them of the problems they experience.
Keep on keeping on
P.s. has anybody heard any new stats abouts it effectiveness - I thought some were due out but my reg hadn’t heard anything at my last app.
Debx
Hi Midge,
The NHS predict tool has been updated to show the percentage increase on 5 and 10 year survival rates, using herceptin as an adjuvant treatment. My stats show an additional benefit of 6.5%- I am really happy with that.
Hi Midge
I agree with you that Oncologists should not dust our symtoms under the carpet. Have heard Christies hospital in manchester are doing research into post chemo and herceptin muscle/joint pain. I ache all the time especially my feet and knees. Will look into this and post if I find any info.
maggie
Hello Ladies,
I’ve been on Herceptin now since the start of all of this back in Feb this year, I was dx with primary and secondarys at the same time. I’ve had at least 9 or 10 herceptins now and have been told I will probably be on it for the rest of my life or for as long as it works, so here hoping its working eh!. Had chemo first with herceptin, then straight into my surgery mx with lymph node clearance, and now 6 weeks after surgery continuing with herceptin and tamoxifen. It is hard to judge what is giving you the SE, could be the aftermath of chemo, or the tamoxifen. Mainly been having these symptoms:
Aching muscles in legs, arms, hands particularly thumbs
headaches (seem to of improved now I’m on tamoxifen! could of been hormonal headaches anyway)
confused brain, foggy, emotional weepy
cough and flu like symptoms for at least 1 or 2 days per cycle
hot flushes (chemopause and now on tamoxifen so could be this and not the herceptin)
Love and light
Sarahlouise xxxxx
…mmm I quite understand where you are coming from SarahLouise as with the combo of Herceptin, Tamoxifen and chemopause its really hard to know what is causing what! I ache sooooo much and even my fingers and toes hurt! I am a very active awkward cuss and grit my teeth and keep going but its at night its worst when at 3am the dull aches and pains seem intolerable!
I hope that when i finish in late Dec I will eventually be able to find out which was the H and which is the T and which is just caused by being poisoned half to death!
I am a very upbeat type but get quite tearful over it all at times…I want to feel how i did before all this kicked off…
Hi all
I am on Herceptin number 10 (following 3 x FEC, 3 x Docetaxol, mastectomy and 20 Radiotherapy sessions.
My side effects are mainly aching joints which are ok when i am up and about, but really painful when getting off settees etc.
One i would like to put to the forum:
I lost 8 fingernails (or part of) as a result of Docetaxol. That was a couple of months ago. I now find that one of my toenails is going black, looks infected at the side and is EXTREMELY painful! I can’t even bear the quilt to be on it in bed so have to sleep with my toe stuck out!
I’m presuming this is because of the chemo, but wondered if anyone else had experienced anything similar. I think i’ll have to visit a chiropodist but can’t bear the thought of someone touching it.
Interesting to read about Herceptin slowing hair growth as my hair always grew VERY quickly and i’ve been surprised as to how slow it is coming back.
Also my veins are all collapsing and i have nice train tracks down my arm!
Oh joy!
Joanne
Hi Jojobro
I was on the same chemo regime as yourself and experienced weirdness with my toenails, I got ridges and yes they did turn black, I got a tip to soak my feet in epsom salts it seemed to keep them hanging on in there. Mine are growing I can tell because I have a ridge like a ring on a tree for every chemo and these ridges are slowly disappearing. You could go to your Dr and get something for the infection on your toenail. Hair growth does seem slow except for the places you dont want hair to grow ie the pubic area and legs it can grow quite fast in those areas which is so not needed!!! and ditto I can join you with the vein collapsing, mine are saying no more of the needles.
Sending love and light
Sarahlousie xxx
Have had first herceptin two weeks ago, and many nosebleeds since. Some aching joints, some upset stomach.
Consultant told me that herceptin doesn’t cause nosebleeds. It’s on the manufacturer’s leaflet as causing nosebleeds. Hmm.
Hi
I had nose bleeds too.
Two more herceptin doses to go ( hopefully) and had echo, heart function dropped from a consistent 65% all year to 60%. 55% is the cut off I know, but it threw me a bit when it has been the same all year. Tech reassured me that it could be just be a blip and wont affect treatment, but it has made me more aware of my heart and am on the look out for other symptoms.
Good luck everyone.
dx
Having my first of 18 on 6th dec with mixed feelings. Hope the side effects are small everyone is different I find it weird that we are told very little side effects and yet when I read the posts it is very different ! I know we are all different so here is the silver lining it can’t be as bad as chemo 
xx
New to all this, but really interested to see how others are getting on with Herceptin. I was beginning to think I was turning into a mad, neurotic woman.
Its a bit disconcerting to be told there are minimal side effects when you feel crap.
I have now had 4/17 doses of herceptin but the first 3 were given with Taxotere so it was hard to know what SEs were due to what.
I am sitting here now, with swollen ankles, watch won’t fit, just about able to get up the stairs due to pain and breathlessness. I am now keeping an eye on my lung function at home as this lovely stuff can cause asthma(in another life, pre Ca I was a respiratory nurse)
Like some of the others on this thread I have digestive problems and can’t predict diarrhoea/constipation from one minute to the next. The reflux seems to have settled now I have finished the chemo and I think was related to the steroids.
Apart from that is anyone else having problems with their skin and eyes? I am slathering on moisturiser but still feel like a prune and my eyes are either swollen or really dry and itchy.
By the way I am 48, now menopausal and would like to have my life back.
Ive just had my 13 th dose of herceptin, and apart from runny nose ive been generally ok, except for the last 2 doses where ive had awful palpitations starting about an hour after i get home and lasting for up to 8 hours, making me feel weak and exhausted the next day.
All my echo’s so far have been ok.
Thought I would add to the discussion as I had my 3rd MUGA scan yesterday and have my 6th herceptin next Tuesday - don’t the 3-week cycles come round quickly? My hospital is very hot on giving MUGA scans thankfully. I finished my 15 radiotherapy treatments last Thursday. My veins packed up after being on FEC so now I have a portacath because I am on herceptin every 3 weeks and it certainly makes life a lot easier, although they can’t use it for the MUGA scan injections which is a pain - in more ways than one!!
My 1st MUGA reading before I started herceptin was 87, the 2nd was 80 after starting it and 77 yesterday so falling, but I have been told that they are very high readings - something to be thankful for! I am seeing my oncology nurse on Friday so will see what she has to say about my readings.
I don’t seem to be experiencing any side-effects to the herceptin. I also had 3 FEC then 3 ‘dreaded docetaxels’ and only now am I beginning to shake off the side effects of aching limbs caused by the tax. My finger nails are beginning to come through pink again, but I still have tingly fingertips and feet as well as swollen ankles by the end of the day. I had my last tax at the end of September and still no sign of eyelashes or eyebrows, although the hairs on my legs are alarmingly lush! Is there no justice in this world? However, much as it goes against my habit of my lifetime I am refusing to shave my legs as it is my indicator that my body is beginning to recover from being subjected to ‘chemical warfare’!
I am not on tamoxifen so the only treatment I am now on is herceptin.
So for me, so far so good as far as the herceptin is concerned, and hoping that it stays that way too!
Mazzalou - You made me laugh with ‘the hairs on my legs are alarmingly lush!’ My friends sister is going through breast cancer although she’s a year ahead of me and she made me laugh when she said “God must be a man cause the only hair thats growing back with some vengence is the pubic hair and not even all over just the outside area ie bikini line”. Seriously tho she was right it is just the bikini line on me and my legs look like I’ve been putting baby bio on em!!
Herceptin SE dont think there are too many for me at the moment very rarely I get heart palpitations and sometimes I get a niggly cough and my breathing can feel heavy, my muga scans come back fine which is a godsend as I am going to be on herceptin forever as I have secondaries.
love and light to all
sarahlousie xx
Thanks for the tip sarahlousie - I’m off to get some Baby Bio for my head right now!
Hi
I had my last of 18 doses of herceptin last week. For those with thin hair on their head I will let you know if mine comes back more thickly now, as it hasn’t been great so far. I dont see the onc until feb now. It seems weird not to have that three weekly contact with the nurses,but I won’t miss playing find a vein.
Dx
Does anyone else get nauseous the day after Herceptin? I’ve just had my 8th and the last couple of times have felt very nauseous and headachy the next day. I also find it makes me very sleepy straight after dosing. I’ve also been told I am having 17 but it seems 18 is standard so am I the only one on 17?