Newbie just wanted to say HI

Hi Dee

I think that is the steroids that are stopping you from sleeping (wide awake with closed eyes...), walking the floors at 3 am .... been there done that.

Well done on getting through first chemo! Read your blog and laughed out loud in places!

Have no doubt that you will kick the shit out of that cancer.

Best wishes
Dane

Thanks Dane

Got six and a half hours sleep yesterday so that was great! Does this usually just happen for the first 3 days after Chemo when I take the tablets or is this something that I have to look forward to over the coming months?

I am intrigued by all the information you guys have in your sig files - like mm of tumours, nodes etc.etc where do you get this info from? I had three nodes tested and one proved positive - so where does that leave me? Just interested really feel you guys know more than me but maybe thats because I am just starting.

Thanks again and chat soon

Hi there

For me the interrupted sleep was normally the night before chemo and the couple of nights afterwards .... ie the time I was on steroids. Sleep then came as per natural schedule and a little more besides. Neulasta injection killed me so that interfered with sleep. Don't know if you are getting that one. No two people seem to have the same schedule so no hard and fast rules.

In relation to my tumour size and nodes positive I only knew this from the pathology report post mastectomy. I actually thought I had 2 tumours until surgery's aftermath where they told me it was just one very big one. I thought I had 3 positive nodes again until surgery came and went and they told me it was 6. I guess until surgery takes place they are not 100% sure. Generally if one tests positive there are likely to be others but again your consultant can fill you in on what they think. An MRI scan had you done one would have shown areas of "interest".

Good luck with the rest of your treatment.

Hi Dee
Sorry you had to join us
This site is a great support. I first started posting questions here when I was up at all hours after the chemo. I had 4 AC and am on T now, nearly finished, 4th one next week. BTW, don't bother reading what I said about AC because the nurse told me last week I was the sickest person they have had. My reaction was obviously not typical. I'm finding the taxol much easier.
The steroids are a right pain. I found once I stopped taking them after the first few days post chemo, I felt very jittery. But it does wear off.

As Dane said, you will find out the full story after the mastectomy. For me, the final result was a good bit different to what the tests beforehand had suggested.
The people who have no nodes positive are the ones who sometimes avoid chemotherapy. They have an oncogene test and if the result is below the threshold, chemo can be avoided. Those of us with positive nodes def need the chemo. Obviously the less nodes positive the better too.
I think just about everyone gets the radiotherapy.

Keep asking questions here, everyone is great with advice.
Best of luck with all the treatment.
Jo xx

Thanks Jo and Dane!

Thanks for the replies and sharing. Still unsure about these node things. They took out three and one was positive - I would presume this was the one closest to the brest (as thats the first one that would carry the cancer). So how do you know if they are in the other ones - or do they know? I see some people say 3/19 nodes etc.etc.

I seem to be doing all this the other way around then a lot of people I am doing the chemo first. They are trying to shrink the cancer before op and hopefully kills any cancer gong to the nodes.

I feel sort of limbo want more info - ha ha thats just me.

Nobody has mentioned RT to me or more Chemo after so I suppose they just dont know. Sometimes its scary doing the Chemo first as they said it was urgent and I got to the top of the list to do the chemo so then you think holy crap must be bad. I must ask them at one stage I had two tumours then somebody else said it was one big mass.

Going to write down questions for next time. Another question how do you know how you are doing on Chemo - so next time I go in will someone sit me down and say well this happened the last time etc.etc. or do I just keep going and going and get a report? I would hope that even after one session they should know if its going well or not?

Okay thats it now thanks or listening - have a photo-shoot on now in Carlor for Laura Lynn HOuse -and boy am I going to get pampered - this Cancer Card really has its benefits - they all cant wait to get their hands on me as will be the last time photo with hair and two boobs!!!!

bye

Hi Dee
When they do the sentinel nodes, they are checking the most likely nodes to be affected. Seeing as you had a positive, they will remove more/all of them in case any more are positive, when you are having the mastectomy. It will all be in the report after the mastectomy. In my case they did find another positive which surprised me. You will also find out how many individual tumours or one big one in the final report.
I don't think they will check anything until you have done all the planned sessions of chemo. I had surgery first but if you post a question looking for info from people who had chemo first, you will get replies. What I've found is that it's mostly how have you been?, any diarrhoea?, any constipation? They don't ask if you had such and such side effect, you have to notice it yourself first. I suppose if they asked us a list, we would think we had them all!
Keep asking questions.
Jo

Hi there

Chemo first to shrink tumours and stop the march of something advanced is the order of the day. Most people have surgery first as theirs is a different stage (earlier). It is to give them a better chance of getting it! They will do blood tests every chemo session and although they don't say it they are looking at tumour markers which gives them an idea of how things are going. In my case after the 5th cycle they redid the mamo and ultrasound and MRI. This gave them a full idea of how chemo had worked.

In my case my tumour was mammogram and ultrasound blind .... it did not show up at any stage. How 10 cm hid is beyond me but it did on every scan done!!!!!

They tend to take out all the nodes at mastectomy if any of them are positive in case any micro bits of cancer have spread so you see things like 3/12. 3 positive out of 12 taken. Everyone has different numbers of nodes (I had 19).

Hope that helps. D

Hi Dee,

Thank you so much for your blog. Maybe if I had read it a year ago I would not have been so petrified going in for chemo.

It made me laugh especially as I was one of those people who didn't make eye contact, who didn't talk to anyone and who looked at the floor all the time. Because I was so frightened and just about managing not to cry.

All the best

Hugs

Kathleen