First oncology appointment..

Hi, and welcome!

I'll answer what I can, I'm sure others will be along soon.

They monitor your weight, blood pressure, blood counts (yep, blood tests every time), temperature, heart rate etc.

You will be having an echocardiogram every few months to monitor the effects of Herceptin.

Have you had surgery yet? If not, you'll be one of the lucky ones getting Pertuzumab as well.

Start date will likely be within 3 weeks.

Yes, it's cr*p. But it is doable. I was lucky enough not to have many side effects, and worked all the way through. Side effects are manageable. There is usually an app for it!!

Ask as many questions as you can. Write down everything. Record the meeting even.

Good luck.

xx

Thank you for your kind reply

the oncologist has prescribed what I think is called TCH chemo

slightly worried as the blood test is to include CEA and CA15-3 testing- is this normal? Or does it mean he thinks it's spread..

also need CT and heart scan

he seemed a bit puzzled that it was a small grade 2 but spread to sentinel lymph node ( also Her2 positive)

i asked if he thought they'd got the staging wrong but he didn't give a straight answer...

will also need to inject myself with something to stimulate bone marrow

feeling a bit glum today! It's all very daunting, oh and he prescribed steroids as well...

finding it hard to believe my poor body is going to cope with all this medication!

any comments would be most welcome

best wishes to everyone on your journies

Hi Phaedra It does sound like a lot of medication but don't panic. The steroids are prescribed to help prevent an allergic reaction and  they also have an anti-nausea effect. In other words they help with side effects. The bone marrow stimulators are just that - they help your white blood cell levels recover from each chemo treatment. 

The heart scan is absolutely normal with Herceptin. My LVEF dropped a bit over the 12 months - from 67 to 58 - and now, 8 months after finishing H it's 70.

Now on to the tricky bit ... It seems slightly unusual to me that cancer was found in your sentinel lymph node but you didn't then have a full axillary lymph node clearance (or have you and just didn't mention it?). If you haven't had lymph node clearance, it may explain why your onco has ordered the extra tests. I had a full body CT scan early on as the initial investigation found cancer in my lymph nodes - they were checking for further spread. However, I'm no expert so I strongly recommend that you ask your oncologist why he's asked for the tumour marker tests and the CT scan. And keep on at him until you get the answers. 

This is a rough time for you but once your chemo treatments start, you'll find you settle into a routine and soon you'll be an old lag.

Wishing you all the best.

Hi Phaedra It sounds like you're going through a bit of a rough patch. Starting out on chemo isn't easy but you will settle into a routine and soon you'll be an old lag. 

Don't worry about the level of medications - the steroids are there to help with side effects (and you'll be given anti-nausea meds too) and the bone marrow stimulators do just that ie they help your white blood cell levels recover quicker. Everyone who has Herceptin has a heart scan at the beginning and then every 3 months 

I'm not sure why your onco has ordered tumour marker tests and a CT scan. A whole body CT scan is pretty normal if you have spread to the lymph nodes but is usually done a bit earlier in the piece. Have you had a full axillary clearance? If not, then have the reasons for not doing one been discussed with you? Full clearance is common when the axillary node tests positive. 

I suggest that you have another chat with your oncologist, or if you can't get an early appointment then with your BCN. Keep asking questions until you get the answers you want. 

Hi

Thanks Angela

congratulations on finishing chemo, hope it wasn't as bad as you feared

the oncologist told me not to use the cold cap, as it stops the chemo reaching the brain?

it could be because Her2 can metastisise

my hair is short and fine, so the impact won't be as bad, if I was younger it might be an issue

all the best x

Hi Phaedra The extra tests are usually just to be sure they have got it right. I'll pick up your points one by one :

I don't know about the extra blood tests, I don't think I had those.

CT scan will be a contrast CT. That is because of the positive node - again, just checking they have it right.

Heart scan - Echocardiogram. In order to have Herceptin they need to check your heart function every few months.

The steroids for 3 days around chemo will keep you awake. Plan to tidy kitchen cupboards or something!!

The bone marrow shots are probably the worst bit. Stock up on Loratadine (Clarityn) - it does help with the bone aches. And the usual paracetamol etc.

Do have a look at the Breast Cancer Chemo Club thread - lots of helpful info there.

You will get through this. One minute at a time.

xx

I'm her 2 positive so hope not..... Maybe I need to check that would be just my luck when I have kept my hair xxx

Anyway no it wasn't as bad as I thought it would be.  Very tired after the last one. No sickness. Sore mouth after first blast used Diflam mouthwash and pineapple supposed to good but one I had the injections that was only minor.

Forgot to say yes you get the injections to take home for 8 days but once you have done it once or twice its fine. That's what I had to do anyway.

Best wishes xxxxx

Thanks for that information, sounds quite hopeful. Love pineapple!

don't worry about cold cap

maybe the consultant has his own reasons for not recommending it- it does seem to cause problems for some women, and doesn't always work, but glad it did for you

onwards and upwards x

Hi and thank you so much for your reply Kacang, I've only just seen it- don't think I've got the hang of how to reply to a thread yet!

from what I understood at the follow up appointment with the surgeon:- I only had one sentinel node, or maybe only one showed up blue!

She wants me to take part in the Pocnoc trial - which is about having rads to underarm, or not depending which group you end up in.

The radiotherapy or the chemo should mop up any stray cells- not sure yet because they haven't sent the info through... don't have to take part it's voluntary

it's all new to me, like studying for a science degree...

think it might be to do with avoiding lymphodaema?

Will try to clarify at next appt

thank you for your help