Low blood counts and Herceptin

I have posted this on the side effects thread too but thought I should separate it out too so that people can see it.

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

Hi polly,

I was only looking on the herceptin site this morning for some other information! What i gleaned there was that neutropenia is exacerbated when you are on another chemo as well. But the site also stated that amongst common adverse reactions with Herceptin were fatigue, neutropenia and anaemia.

the link is herceptin.com/herceptin/professional/adjuvant/guidelines.jsp

But don’t get panicked reading all the side effects - remember even those of aspirin are pretty scary to read.

I have been on herceptin now for more than 4 years but I don’t think I suffer a single one of the possible side effects. I think sometimes when you have herceptin for primary bc it follows pretty close on having just had chemo and some of the problems are just a slow recovery from those effects.

dawnhc

Hi Polly

Wow, I can’t believe I’ve finally found somebody in the same situation as myself. I started herceptin with my 4th lot of chemo (taxotere) and finished chemo right at end of October. Continued with Herceptin every 3 weeks and beginning of January had Herceptin and got a call from the chemo nurse to tell me my white blood count was very low and they were a little concerned about it. It was at the time around 0.7. I was told to be careful re infections etc. My oncologist stopped my Herceptin to enable my blood to recover so from Jan to March had no Herceptin and my white blood count remained extremely low, dropping as low as 0.2. After a lot of persuasion from me, the oncologist agreed to restart Herceptin. Since then, I’ve had two infections and been in hospital on IV antibiotics on both occasions. My oncologist wanted to stop the Herceptin and sent me for a second opinion to another oncologist as he’d never known anybody’s neutrophils to stay so low for so long. Anyway I did have some injections to boost my white blood count but not having those right now as the oncologist is not keen to keep giving me then as long term effects are unknown. I also had a bone marrow biopsy to rule out anything sinister. So in an nutshell, that’s my story. What this means is that i haven’t been able to go back to work for fear of picking something up on the trains or in the office (which has air conditioning). I did start a thread a while back about this, but there was nobody out there in the same situation as me until now. I’m waiting to see a haematologist at another hospital for a second opinion on my blood and will probably have to have another bone marrow biopsy too. Are your hospital still ok about giving you Herceptin bearing in mind your low white count?

Ruby xx

Hi girls,
I’d been having terrible mouth ulcers on Herceptin (finished chemo last Nov) which were always a sign of a low blood count. The other week at clinic I had a blood test and I was low, at 2.0. I felt like saying ‘I told you so’! My onc just shrugged and said it would sort itself out with time. He thought it was a throwback to the chemo. I’m still working with children and receiving Herceptin…
Jacquie

Hello Dawn

Thanks very much for your reply, your ‘positivity’ if I can call it that is inspirational, you make sound being on treatment so long so easy, but I am sure that it is not.

Ruby, fortunately for me my blood count has not got as low as yours but nevertheless it is a worry, my gum started feeling better but as soon as I finished antibiotics it has started feeling sore again, I just know that the infection is still there and my body is struggling to deal with it! I am having my blood checked from now on before I have Herceptin but my feeling is that they are still putting it all down to Taxotere and not Herceptin. This is despite the fact that my last neutrophil count before my last chemo was around 2.5, now it is 1.5! So, I reckon unless I am severely neutropaenic they will just carry on regardless.

Jacquie and Ruby, I think it is difficult to know what drug is causing what side effect for us, I find it amazing how loathe medical people are to attribute any side effect to Herceptin. The fact that my onc was perfectly aware of side effect of low blood counts and yet the nurse administereing it and running the clinic was not I thought was unbelievable!

Oh well, Ruby I hope your blood counts improve soon so that you can have the wonderful Herceptin, despite being totally fed up with having it I know that it is a life saving drug and I thank my lucky stars that I was diagnosed after it was passed for use with primary breast cancer.

Jacqui, likewise I hope your blood picks up and that you are not putting yourself at risk in your job.

Take care
Polly x