What other options?

Hi Sheryl, 

I have actually thought about conference calls :smile: The Evorolimus & Exastame didn't actually work for Mum which was a shock because it's apparently one of the best ones. So after that didn't work, chemo was the next best thing. I hope the E&E continue to work for you. Thank you so much for your reply x 

Hi Karen, 

I can't offer any further assistance here than the other ladies have, I am sorry. I have er+ secondary bc with bony mets. I have had radiotherapy this time (although had chemotherapy when I was diagnosed with early bc in 2003). 

Currently I am taking Everolimus & Exemestane (similar to your Mum) and it seems to be working - due back to see my  oncologist in a few weeks for my quarterly visit so will find it then. This is my first quarterly visit, prior to that it was monthly.

I am also on denomosaub - bi-monthly. This dosage can be amended accordingly depending on your Mum's calcium readings. Initially I was on this monthly but my calcium levels dropped significantly and ended up having a little stay in hospital.

As  distance can be an issue here, maybe you could find out when your Mum's  next appointment with her oncologist is and perhaps ring the rooms the previous week to check if you can be in a "conference call" when your Mum is in with her oncologist. That way, you are able to ask any questions that your Mum may not think of - another set of ears is always handy.

My very best wishes to both you & your Mum. My Mum had bony mets and lived 200 km's away. There were times when I was able to make some appointments but most of the time I could not. It is so difficult trying to support your Mum from a distance and you are an amazing daughter.    

Sheryl xxx

Mum was really sick too Melinda, and she too was hospitalised for 3 days. I normally try and get my sister to go in with her, but I think I'll just call her onc to get the low down. Thanks again for all your responses. Appreciate your time ladies x 

Karen, I remember them also saying if there are any problems they can reduce the dose. I don't know what I had but I'm guessing it was the full as it was never reduced. I was hospitalised after each infusion for 3 days as I was so drug sensitive and Sick. Allergic to anti nausea meds like  maxolon. Nausea was bad only thing that helped me through was Ativan and nexium for reflux. Ibuprofen and panadol taken together. Is there anyway you could attend an appointment with her in the future? I know it must be so hard but then you could ask everything. X 

Good to know there are 2 Red Devils, glad they don't put them together!  My cancer was 90% ER & 10% PR. My dosage wasn't in percentage but milligrams from what I can read on my notes - 95 mgs for each drug & now 125 mgs for Taxol. I was told they dose on weight & I am 50 kilos. I don't know if this helps. I think being a relative you should be able to speak to her oncologist. 

Hi Melinda & Glemmis,

Mum's cancer is also ER+. Yes, it's very strong. Do you ladies know how much dosage you were given? Mum had 82% the first round and then she couldn't handle it and had lots of nausea and couldn't keep anything down. Hence she's down to 52% dosage. Not sure if I'm allowed to speak with her onc. I think I'd need to be there in person. Mum used to sugar coat everything so we wouldn't worry, but I think she knows not to anymore. Thanks again ladies x 

There are 2 'red devil' Chemo drugs, Glemmis is correct, one is AC being the Adriamycin and FEC it is the Epirubicin. Depending on your diagnosis, my Cancer was ER+ only, most people I know had AC. They are both similar drugs, but the hard hitting Chemo used in Breast Cancer. 

Hi Klemarie, I had 4  x AC three weekly & am now halfway through 12 x Taxol. The "A" part of AC is Adriamycin aka " The Red Devil" so that must be what your mum is having & your urine is red for about 24 hours. It is quite a common regime combined with other drugs. it is the strongest chemo but luckily I didn't suffer too much.  It is good that your mum is having a break & will then be able to have the rest of her chemo. Good idea if you can speak to her oncologist directly so you can understand the situation. Good luck!

Oh I have friends who have just completed Herceptin at Epworth Richmond. Karen I wish I could offer some suggestions, its the combinations they use that work specifically for whatever your diagnosis is, everyone is different. Hopefully some ladies with metastic BC can jump in with their experiences. I know it must be hard being so far away, im wondering if you'd be allowed to speak with her Oncologist directly? x

Hi Melinda, 

She's on a combo but I can't remember the other one. She's only on 52% dosage as that is all she can handle and onc won't give her anymore than that. So if it's the strongest chemo, I am wondering once the red devil stops working, what else could they possibly give her if she's already on the strongest one?! 

She he was at Epworth Richmond and she's now at St.John of God in Berwick. I hope you continue to do well Melinda x