Triple positive - looking for people who have positive experiences

Hi Picklesmh

Welcome to the forum and I am sorry that you have been diagnosed with breast cancer.  My tumour shrunk from 16mm to just 3 mm after three infusions.  

Wishing you the best of luck with the rest of your chemo and your operation.

Best wishes

Daisy53

Hi,

Thank you for your reply, I hope you’re doing well now x 

Hi 

Just to say that my tumour sounds very similar to yours. I've just finished four cycles of EC and now into third of 12 weeks of paclitaxel +. trastuzumab. Also having a mastectomy after chemo.  I actually have the same questions as you but no answers I'm afraid at this point.  Maybe just good to know that others are going through a similar experience.  I'm just counting the weeks as they go by. When I'm feeling unwell, it seems never ending. When I'm busy and feeling reasonably normal, it seems manageable. 

How far into the chemo are you? 

Hi just wondering if you had to do chemo I had a mastectomy but not looking forward to chemo I want to do the infusions 

• Hi, I’ve only done one round of the EC so far, I’m due my second in a weeks time. How have you found the paclitaxel compared to the EC? I wasn’t unwell for the first dose of EC particularly just very tired and fuzzy brained is the best I can describe it. Have you felt much change in your tumour? Sorry for all the questions but it’s hard to find people with similar tumours! Thank you for replying.

Hi 

I let you know in a couple of weeks when I've had a scan.  I think so but I'm cautious about be certain until I've had the ultrasound. I now have eight more weeks of paclitaxel. Are you having that after the E C? 

Hi Picklesmh, just seen your post and felt I needed to respond. I was diagnosed with HER2+ bc in June and had 2 rounds of EC. I didn't have the other 2 because the tumours hadn't shrunk (largest 5cm and smaller satellites) I then went on to 12 weekly Paclitaxel and 3 weekly Phesgo. I only managed 10 Paclitaxel because of side effects. I had a single mastectomy and the post surgery results were amazing... a complete pathological result meaning no cancer detected in the breast tissue or 5 lymph nodes.  I'm on Herceptin injections for a year as it predicts 14% less likelihood of recurrence. I'm not having radiotherapy because the mastectomy with no lymph node disease represents a low risk of recurrence.  If it comes back I can have radiotherapy then (you can't have it twice) but I couldn't accept the radiotherapy if there was no cancer left.  Stay positive, you don't know what else to worry about yet. Just focus on getting through the treatment the best you can and then reassess as and when you have more information. It's hard I know but somehow we get through to the other side, honestly. Take care xx

Sorry I missed your reply, yes I’ll be having the 12 paclitaxel after I finish the EC along with 3 weekly phesgo injections. I’m due my 4th and last EC on Thursday. My tumour seems to be responding really well to the chemo so far and my oncologist is pleased. It’s hard to know for sure until you have scans what’s going on but from the big 5-6cm but I could feel it’s down to probably less than 1cm as we can’t really feel it now. I’m really hoping it continues. I hope your treatment is still going well. 

Thank you, I’d posted this when I was in a huge spiral as the growth rate of my tumour was just ridiculous. The chemo is working well for me and I’m about to go into my last cycle of EC before I start the weekly paclitaxel. That’s amazing you had such great results even though your treatment was cut short. I can only hope for the same sort of response, so far on the EC it’s responding really well and the main 5-6cm lump is down to less than 1cm to the point I can’t really feel it. There were other bits I couldn’t feel so it’s hard to know what’s going on fully without a scan but I’m hopeful they’re responding as well. Thank you for your reply, it’s always good to see positive stories from other people with large tumours. I’m really hoping for PCR by the end of this! 

HI SuzieW23

Interested that you didn't complete the Paclitaxel.  I have three more to go and my body (having been strong so far) is starting to protest.  Horrible side effects and borderline white cell count. Apart from a horrible rash on my legs which looks worse than it feels, it's the numbness in toes and fingers and nails going brown which has suddenly set in. 

Was it the oncologist who decided to rein it in or was it your choice?  Did they say anything about the impact of stopping early?   

Trying to keep positive as end of chemo is in sight but cumulative effects are now making me feel quite unwell.  

Did you have reconstruction at the same time as mastectomy?  If so, which kind of operation?  

Reading your post, has given me a boost-  thank you.