Herceptin and having blood tests

Dear Ladies
I’m in urgent need of some help.

I finished chemotherapy end October 2007 but still having herceptin until Summer/Autumn 2008.

At the beginning of January 2008 I was told that my white blood count had dropped very low and that until it came up my Herceptin was being stopped due to a low white blood count. I had various tests inc. bone marrow biopsy and there were no answers and white blood count remained low. It was decided to start my Herceptin again nearly 3 weeks ago as they didn’t think it was due to the Herceptin. Then last week I ended up in hospital with an infection for 5 days. Am due for Herceptin tomorrow and was told that I’m not having it now and for foreseeable future. Am gutted. The low white blood count was only picked up because my hospital take blood tests at each Herceptin infusion session.

For those of you on Herceptin, were you given blood tests each time you had Herceptin? If you did, did any of you had problems with your white blood count? The reason I’m asking is that I need to put together an arguement for when I see the oncologist tomorrow to persuade him into letting me have it.

I look forward to hearing from you.

Ruby xxx

Hi Ruby,

I started herceptin in November 2006 and finished in Jan 2008 and didn’t have any blood tests at all throughout my herceptin treatment, plus I was treated at a centre of excellence. Sorry I can’t be of any more help and hope all goes well when you see your onc tomorrow. Luv xxx

Thanks for getting back to me Swissmiss

I just wanted to see whether everybody had blood tests prior to having herceptin because if not then if I hadn’t have had these blood tests we would be none the wiser and I wouldn’t have had my herceptin delayed/stopped. Some people must also have a low white blood count and not be aware of it going through herceptin and so not had problems. I seem to recall that there were a few people who had continuous low white blood counts for a long time which then settled down of their own accord.

I’m hoping that I may persuade the oncologist to change his mind but I really don’t think this’ll be the case because he and the haematologist have decided this together. I’ll do anything to have it!
Ruby xxxx

Hi Ruby,

I’m not really sure what the standard procedure is to be honest, it probably varies from hospital to hospital. I had my last chemo on 6 Nov 2006 and started herceptin on 27 Nov 2006. I may not have had blood tests done because I somehow managed to come through my chemo without any problems. I remember when one of my heart scan results went very low and my onc suggested stopping herceptin and I felt so desperate so I know what you mean when you say you’ll do anything to have it. I assume they will check your bloods again tomorrow. How many herceptin’s have you had so far Ruby? As if its not bad enough hey, more worry. Hope you can get some sleep tonight. Love xxx

Hi Ruby I started herceptin straight after FEC and alongside tax chemo so first 4 sessions I had blood tested the day before, then Onc let me go to 6 weekly to save on hospital visits and give my battered veins a rest and due to my bloods always stable, then for final few months I tried to get out of it altogether as viens were playing up big time, it started to take several chemo nuses a couple of attempts each to find a vein and then it wouldn’t give blood only take the herceptin. The nurses sort of let me get away with it but did insist on final blood test to check on status end of treatment.

How many have you had, there have been threads on here commenting that 18 sessions is not necessarily needed, also is it worth falling dangerously low each time and ending up alot more poorly. I had to have a break after 10 sessions due to quite a drop on my echo score and at the time was gutted and in tears but after going to my GP for his unbiased opinion reaslised herceptin may do me more damage. Luckily score recovered after 6 week break and finished treatment no problem (although as my onc points out, it is still a new drug and no one knows of any long lasting effects) I was treated Churchill Oxford and I met a couple of other herceptin ladies towards the end of my treatment and they were all being tested before each session.

Debbie

Hi Ruby

I had herceptin weekly alongside Taxol first and later FEC (which was only once every 3 weeks)>

I had blood tests before each and ever one even when it was only herceptin, my white cells were ok throughout the Taxol +herceptin period (12 weeks) and only dropped after ever fec, from the second one. I had my fec postpone donce because of this, but still had herceptin, I have never heard that it can have this sideeffect. My oncologists didn’t think it was necessary to postpone it, even when I had really low neutrophils and an infection being treated witth antibiotics.

Hi Swissmum, Debsie and Webmum

I’ve have 7 lots of herceptin so far which started with my 4th lot of chemo together with Taxotere. I had injections to keep up my white blood count as kept ending up in hospital. Counts were fine until beginning of January had 6th lot of Herceptin and was called to say white blood count very low 0.5 so no more Herceptin until they went up. Had loads of blood tests which were all around 0.4 - 0.7. They didn’t and had a bone marrow biopsy. Still no answers but was told they’d go up soon. Went up to 0.8 in March so allowed Herceptin again and was told low white blood count not related to Herceptin.

Just been in hospital with infection and so was put on antibiotics. White blood count was 2.2 when admitted but by day 4 had gone down to 0.5. All very complicated and very annoying and upsetting and frustrating.

Wish somebody could come up with some answers.

Love
Ruby xx

Hi

Am due my 2nd Herceptin next week at when at the hospital for m 1st one they told me I would be having a blood test with every other Herceptin.

Liz xx

Hi Ruby

Prior to your appointment, if you have time, you are welcome to call our helpline for further information from one of specialist nurses about standards regarding herceptin, the number to call is 0808 800 6000 and the line opens at 9am this morning.

Best wishes
Lucy

Hi

I was interested by this thread. I’ve had 3 Herceptins already and when I saw my onc last week, I asked her if I would be having any blood tests during Herceptin. I have trouble with my veins-or lack of-so I was concerned. She told me that there would be no need unless I had any problems. So I am assuming that if my muga scan is ok and I have no other problems then I won’t be having blood tests. I finished my chemo in Dec07 having only doing 5. Final one got cancelled due to spending nearly 3 weeks in hospital with an infection.

Angela x

Hello Ruby,
I’ve had 4EC and then 4 taxotere, with the taxotere they started the Herceptin. So with the first 4 my blood count was checked as would normally be the case with chemotherapy.
The following 14 however were given to me at home,they did’nt once check my blood count beforehand.
I had the muga scan every 3 months and they used that as a guide as to whether I could stay on it or not.
Had a dodgy scan which dropped to 50 per cent towards the end of treatment, they said if it dropped again they might consider stopping Herceptin. like you I was gutted.
Fortunately it came back up again.
I think it’s definately worth asking the question why do do have to have these blood tests when it’s not the same for everyone.
Let us know how you get on.
Best Wishes
Linda x

Hi Linda, Angela, Liz and Lucy (Facilitator)

Thanks so much for getting in touch. Lucy, I will call the helpline to see if they can help at all.

Liz, it’s interesting to see how many people do have blood tests and how many don’t. I haven’t heard of anybody having low white blood counts like me and for so long.

Angela sorry to hear you had such a long stay in hospital. I’m just really concerned now that my white blood count is continuously low whilst not on chemo that it’s going to effect what I do with my life until it sorts itself out which doesn’t seem to be happening as it’s been low since beginning of January.

Linda really pleased to hear you managed to complete your course of Herceptin. I am so gutted about what’s going on as I feel that the Herceptin is my life line and my cancer was aggressive so I feel the bad outweighs the good the Herceptin will do for me.

I have my appointment this afternoon but don’t feel particularly positive that the oncologist and haematologist will change their minds!

Ruby xx

It is only in the last year at the Marsden where I am treated that they stopped doing bloods regularly for those on herceptin. I was told that because I am on pamidronate (bisphosphonates)as well that mine would continue to be done. Maybe that sheds some light on the variation of experience. It is obviously a decision being made by some PCTs to save money where tests are not essential. I think when a patient has a clinic appointment then they have their bloods done.

dawnhc

I have my Herceptin at home and don’t have any blood tests done. I am also on bisphosphonates so interested in what Dawnhc says. There doesn’t seem to be a standard procedure.
All the best
Anne

Thanks Dawn and Anne and everybody else for your input.

I’ve been to see the oncologist and he had consulted with my haematologist and another hospital up in London who all agreed that my Herceptin should be stopped BUT he has also taken my feelings about this into consideration and knows how much this means to me. He also does not think it’s the Herceptin affecting my blood (neutrophils down to 0.3 today) so he’s agreed to give me the G-CSF injection and then I will go back next Wednesday for another blood test to see how my blood is doing. If it’s doing better than I’ll have the Herceptin. I’ll also have another bone marrow biopsy done in a month’s time. I do feel better knowing that what I want has been taken into consideration.

Best wishes to you all
Ruby xxx

Hi all. Reading all the different threads it really does appear to be depending on which hospital you attend. I have had my 8th Herceptin (chemo finished in July and rads in October) and I only need to have my bloods done every 4th Herceptin along with my heart echo. I have never felt healthier - strange I know but I am back at the gym 3-4 times a week running at least 5km each time and never felt fitter. Having said that, tamoxifen and zoladex have caused some joint aches and pains but not giving into it!!! Going off to Cyprus next week so spirits are really high just now.

Ruby, glad to hear your Oncologist has listened to your feelings - I think they will always do what is best for us, especially if we are willing to challange them.

Good luck and take care.

Lesley x