I have just had dose 15 of 17 herceptin and can’t wait to finish. I have throughout treatment suffered with flu-like symptoms, splitting nails, relentless feeling of being tired etc etc. How long does it take to feel normal again at the end of treatment??
Hi Annieg,
I know how you feel, it goes on forever, doesn’t it?
I had my last herceptin (they do 18 in Leicester) on Dec 3. By then I was completely worn out. I had managed OK until about September, and had recovered well from chemo/rads, but went downhill throughout the autumn. Now, 3 months on, I am feeling much better. Not yet right - I still get tired easily - but so much better than I was.
My nails are also getting better. They are not as prone to breaking as they were.
Thank you xxx
Hi
I finished Heception in Jan08. It was a long journey and I had a whole range of side effects. It took a good three months to begin to feel like I was getting back to normal. Only now can I say my nails have finally stopped splitting. I also had really bad sinus trouble once the Hecepin finished. So hang on in there. You have been through a lot. It does get better.
Geraldine45
I finished Herceptin after my 16th of 17 infusions because my heart scan showed a drop in LV function from 70% at baseline to 49%. I knew something was wrong as I had begun to feel very tired and was (and still am) only able to complete small tasks at home, before needing to rest and even sleep! I feel that the exhaustion we tend to get towards the end of Herceptin may be due to it’s effect on heart function, bearing in mind that it tends to drop bit by bit throughout treatment even though it may remain above the magic 50-55%.
Oh - and I asked my Onc why some oncology units give 18 and some 17 infusions, 18 being 12 months worth, and he said his unit only does 17 because it is a fact that Herceptin stays in the system for quite some time after the last infusion, so, 17 plus the time it takes to clear the system actually equates to 1 year.
xxx
I came off Herceptin last November after 13 lots because of heart problems. I am still very tired and my heart is now at 45 so higher but not right. All my bones hurt, particularly my feet and ankles and shins. I really notice it in the morning when I wake up. I am having a bone scan and liver scan as a precaution. Has anyone else got this problem?
Mary2
mary2
I am due to have Herceptin Number 9 next week providing my latest heart scan is ok. I developed joint pains in my knees and ankles after my 3rd infusion in Dec 08…really badly … I am like ‘an old woman’ when walking. My legs are really stiff and although my lovely GP has finally prescribed me with adequate pain relief it will be a while before I can ‘run the London Marathon’. At best I can hobble about but I suppose all things considered we will do all we can to fight this horrible disease.
Lyn
lyn
Thanks for replying. Bone scan came back clear so I assume my pain is still the Herceptin. No one tells you Herceptin can do this. Hope your heart scan is fine.
Mary
Hello to you all on this thread.
I am feeling so sorry for all of you as you do seem to be having or have had a bad time on Herceptin. I am due to start on it in July but quite frankly this thread is putting me off. I have yet to hear of anyone not suffering awful side effects. Is there anyone out there who has sailed through the treatment?
emmbee
Don’t be put off. Although I have had problems I am still grateful I have had it and hopefully it will do the job. My symptoms will fade away so it is a short term problem. Lots of women received treatment with me and most of them were fine. People often worry about finishing it. They feel safe while on it. Remember people who write on here often do so because of problems and want help.
Good luck
Mary
I finished 18 x herceptin June 07, because I started it with taxotere chemo then carried on thru rads and starting tamoxifen i never really noticed any herceptin side effects. the only real hassle for me was 1 blip on echo half way thru that resulted in 1 months break + my veins.
I finished chemo July and rads Oct 06 and friends did comment that by Christmas 06 I was looking less tired. As soon as the tax started wearing off I took up walking again then back to high impact aroebic cass Jan 07 halfway thru herceptin and now doing 3/4 classes a week but have noticed I dont have the stamina pre breast cancer. I remember having aching bones to start with and would literally stagger out of bed in the mornings, I always put this down to taxotere as it did stop while still having herceptin. a couple of my finger nails still split and my 2 big toenails that i lost on the taxotere are still tender.
It was a long long time for continued treatment and I personally feel its a mixture of all thats wears us out, I got tax and herc while women were still taking health authorites to court and 6 months prior to NICE approval for primary BC, I have crap prognosis and my Onc pulled out all the stops for me as an execptional case, I’m still here nearly 3.5 yrs NED.
Was at my GP’s just before christmas moaning re my tamoxifen, he told me good, its definitely in my body and hopefully doing its job. I suppose thats one way to look at, perhaps I should embrace my love handles.
Debbie
Reading this thread has made me feel better, although I am sorry that we are all suffering one way or another.
I have just had my 13th Herceptin, the first started with round 3 of Taxotere which finished in Oct.
I am only 51 but I feel like a woman of 101, in fact some of that age might feel fitter than me! I have severe pain and stiff shoulders, both arms are painful, my knee hurts and walking from standing up is difficult at times. Even my fingers have started to become painful, I would describe it like arthritis as they are stiff too.
My nails have all split down to the quick and it looks like I bite them, opening jars and other things are difficult with no nails.
I find I can only do small chores before getting exhausted, although I do try to walk every day for at least 20 minutes. The tiredness is getting worse, in fact I think in some ways it is worse than taxotere, at least then after the first week it started to get better.
And the weight gain??? Is anyone else finding they are putting on weight, or to be precise not able to lose it?
I’m not on any hormonal tablets, just Herceptin so I can only blame this.
I was also told that there are no side effects related to Herceptin, and that was by a Prof in Oncology… I think its time he updated his research, don’t you?
All this said, I am glad that I have the opportunity to have this “wonder drug” and hope the SE will diminish with time.
But, as I said it does help to know I am not alone, so thank you for starting this thread.
it was good to read this thread. I finished 18 doses of herceptin two weeks ago - I had had a couple of breaks because of dodgy heart scan results, but in the end i got to 18 doses. i know I have to wait till it is out of my system, but I still feel very very tired, terrible nails, worrying weight gain - will it get better? I am so looking forward to feeling well again, but it is so long that I hardly remember what it feels like to feel good. I hope it will come soon.
Best wishes to everyone who is going though all this - you are not alone,
Anne
Good luck Anne with a speedy recovery from Herceptin, you are just ahead of me and I have all the same problems that you mention. I will finish in July and can’t wait for life to become normal - whatever that is.
Wishing you well
P xx
This is very interesting about the nails - I thought mine were still damaged from the chemo, but one year on they’re still terrible. They constantly flake and split down lengthways, and sometimes get infected. I asked my onc about it and he said it ‘could’ be the herceptin, but he hadn’t really heard of it from other patients. I’m on Herceptin indefinitely as I have secondaries, so have been on it for 19/20 months, along with tamoxifen. I do count myself lucky to be able to have it - it really seems to be the most effective drug of any they’ve found - it’s not often that they stop a trial early for ethical reasons, because it’s so effective and they have to offer it to the control group as well.
I tend to feel like I’m ‘wading through treacle’ for a few days, about 4-7 days after having it, and get some nausea and headaches sometimes in the first 24 hours. I feel tired a lot of the time, but I put that down to juggling work, a family and cancer, and a social life of course! My feet and ankles ache and feel stiff, but I still manage to go for the odd jog, and walk a lot.
So please don’t be put off - it seems that everyone reacts differently to it. I go on to do a full days work on the days I have it, but others I’ve met go straight home and lie down!
Good luck to you all, and spare a thought for me when you get to the end of your 17 or 18!
Jacquie x
Jackie,
What a brave lady you are. I don’t start my Herceptin until July but when I do I shall think of you and be thankful. My last chemo is on the 13th. Good job I am not superstitious. Have you tried rubbing oil into your nails every day. It seems to be helping mine. I have some brown marks and a few ridges but no splitting.
Yes Jackquie I agree with Emmbee, you have a lot to contend with and you seem so positive.
My nails seem better since treating them with the antifungi stuff, and using the silicone varnish that I used all through chemo, but I make sure they’re kept very short so as to prevent splitting. My Onc and nurses said it is all part and parcel of the treatment, including Herceptin.
Anyway, good luck to all
P x
I too am on herceptin . I have just finished Taxotere chemo but have bad muscle aches. Do you get muscle pain Too?
Hi birdy debs,
Did you have muscle pain on Taxotere or just since you went on Herceptin? How many cycles of Herceptin have you had? Do you have any other side effects?
Not many people seem to go on this thread so I thought I would reply so you do not feel neglected.
Hi Birdy Debs
I finished taxotere in March and am on Herceptin. I feel that my muscles are stiff, especially when I have been sat down for any period of time. I also still have the peripheral neuropathy. Do you get that?
Linda