Heartbroken, but unbroken

How did they know chemo was working for me?  My tumour went from 2.2cms to 1.7cms in 3 months; and then to 0.6cm in 6 months.  That’s how they knew it was working for me.  

Hello everyone. 
Thank you for your continuing kindness. We are now preparing for our first appointment with the medical oncologist. I am starting to get together a list of questions. 
 Its funny - in my line of work I often have to use scant resources to find out a lot of nformation about things Iknow nothing about. One of my primary tools is the internet - dr google - as well as access to experts. I like going to the experts having gained what knowledge I could from other sources. In this case I have - guided by many of you as well as the experts - consciously avoided doing this.
 As a result, I am a bit worried about my questions being stupid. 
If there is no detectable Cancer currently in her body, how is the success or otherwise of Chemotherapy measured?
When does the chemotherapy begin?
What is the name of the type of chemotherapy she will be receiving?
What is the expected frequency of this, and will this change over the course of the treatment?
What are the expected side effects of her chemotherapy regime, and how can they best be managed?
How can she best prepare for the side effects of chemotherapy over the next few weeks?
Are the effects of chemotherapy cumulative, ie will it get worse with each session?
What do we need to know about other sorts of therapy such as immunotherapy?
What clinical trials are available to her, and how do we decide whether we want to be involved?
Should we stop eating some things like meat/caffeine? 
What sort of exercise regime should she be on? We are concerned that her fitness has suffered already after almost three weeks with minimal activity. How should this be managed? 
What is the likely impact to her immune levels of chemotherapy, and how do we manage that bearing in mind we have two young kids at school? 

Those are a lot of questions.

Hello @strongtogether I too had a TNBC diagnosis and two out of three sentinel nodes had cancer in them. One was 5mm and the other 7mm. It was a terrible shock!   I am much older than your wife but underwent a lumpectomy then an axillary clearance.  At the end of August it will be 12 months since I finished active treatment which was 4 doses of AC and 12 doses of Taxol.  I then had 30 doses of radiation. It is doable and you just take a day at a time.  I feel so well and healthy now with minimal side effects and am constantly amazed at how my body recovered so quickly from the  treatment.  Wishing your wife strength and my very best wishes throughout her treatment. 

Hi strongtogether, sorry to see you here, but welcome. You have come to the right place for support and understanding of exactly what you are feeling and going through.

Im also TNBC, was diagnosed in October last year, at diagnosis it’s such a shock, disbelief, a very distressing time, sounds like your wife has a great support team so that’s absolutely fantastic.

I found doing a mindfulness and meditation course helped me through the early stages of diagnosis, even now I use it if things get on top of me.
Try and stay as active as possible, especially through treatment, do things that you love to do to keep your mind occupied.
Having a good night sleep was a great help in dealing with your emotional state, so seek help if sleeping becomes an issue.
I would recommend to stay away from Dr Google, any information google Cancer Council foundation or BCNA websites .

I am currently still having treatment, just finished chemotherapy, Having surgery  next month then Radiotherapy.
Stay positive, there are a few of us on this forum with TBNC , some of us are still in treatment, some here have been 7 years plus cancer free. I myself have found it fantastic to talk to other people that have had the same diagnosis.
I’m happy to pm you privately an stay in contact to help you and your wife, any questions, or just need to vent or just need to tell someone how you’re feeling I’m here.

As for finances I went full public, what I have heard though is that yes definitely go public when you have Radiotherapy definitely for no out of pocket expenses.
Get a good Breast Care Nurse as another support person, if you feel happy to look for a support group in your area.

Sending gentle hugs to you, stay positive, We can do this !

Yep, it's important to work out what you need and then ask for the appropriate help.  With a young family it may be that you want to have a couple of people on standby for childcare (if there's school or kindy involved, make sure they know and that you have the appropriate friends/family added as emergency pickup people).  

I had some lovely friends who brought over a few meals but the biggest things were providing somewhere for my kids to go after school when treatment ran late, and a friend who drove miles across town to pick up my daughter and take her to a school sports competition during the day while I was having treatment.  

Hi @strongtogether. To save you being overwhelmed with multiple lasagnes, you might like to check out some apps such as the following. Could be handy! K xox

https://gathermycrew.org.au/

That's great news @strongtogether  and you seems super organised.    You will find a list on one of these threads ( hopefully someone will jump in here with a link)  on what is really handy to have on hand for those going through chemo.  Do you know what sort of chemo regime yet.   I was on TC regime.  
Everyone is different in their own reaction to chemo.  depends on type and dosage.   Some work part time through it were as others like myself couldn't at all.  I think some one wrote on here once that chemo just makes you feel grotty which is really apt. Doable but grotty.  But definitely check the list out as it gets closer to time.
All the best. xo

 

Thank you all for your comments and replies.
We have had some good news recently, with the PET-CT scan coming back clear. She had axillary surgery to remove the lymph nodes on that side, and once she is recovered we will start chemo. 
We feel a lot better, and we can see some parts of an overall plan starting to come together.
I am going to be coordinating the help of our support group of family and friends. Trying to keep them involved without putting too much on any one of them, especially at the start when everyone wants to jump in to help. 
They are good people. We are lucky to be in a good place with good friends. 

hi @strongtogether
Sorry I have not replied before now but been away on a break.... 

I am part of admin on a Facebook group for TNBC https://www.facebook.com/groups/1166665270079659/
ONLY Ladies can join it .... your wife might like that 

I am nearly 7yrs out from diagnosis with double mastectomy and chemo and rads 

Others have given you lots to think about and ask... 
Feel free to ask any questions. 

Soldiercrab

@strongtogether  - as with some of our members, I went private for surgery & public for rads.   I had a pretty big 'gap' in the private surgery (about $6000 including gaps in scans, meds over the last 18 monhts etc) whereas public rads was totally free.  I even stayed at the hospital for the month at the Lodge provided for patients & their families at Minimal cost (1.5hr drive each day, each way otherwise!)  So definitely ask about going public for the surgery as well.  Most surgeons work in both systems, at the same hospital!  My Health Provider NIB took care of the 'hospital costs' but not the surgical costs.  Ask THEM how much you are covered for, with the surgeon's fee.  They cover the bed and theatre costs - just not always all of the surgeon & anaesthetist!

All the  best with your decision making xxx