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
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.
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.
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.
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
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.
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.
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.