Anyone with early BC (non metastatic) on T-DMI /kadcyla

Thanks for dropping those links here @noosa_blue150. I’ve just received my pathology results after surgery and have a small amount of residual disease, so I’ll be switching to T-DM1 in a couple of weeks’ time. How have you been going on the treatment?

I’ve now had 6 /14 treatments. It’s been a easier chemo regime I found than previous AC and taxcel chemos in most ways -  I haven’t had fatigue, have some joint pain ( I’m also on femera hormones so do,wonder about which is side effect of hormone vs chemo at times ). I did find issues with constipation week after chemo so,I have coloxy and movicol handy that week to avoid that again .That wasn’t funny .

My pathology results showing that it’s affecting my liver BUT if I understand it correctly it hasn’t gone off and gotten to,the level where they’d stop treatment . Your Dr would be keeping a eye on that too.

Having a few issues with insomnia, again ? Chemo ?hormone tablets so am doing a mindfulness course and trying meditation . I’m allowed atvil tabs for 3 nights post chemo,days which is mostly post steroid tabs they give you those days anyhow 

‘My heart failure - which dropped to,51% ejection fraction with herceptin prior to,surgery , is still,holding well at 58% now on the two cardiac drugs I’m on so,that’s good. Regular echocardiograms will continue to keep a eye on that and I’ve been assured once off T-DMI my heart will go,back to normal . I find myself a bit puffy these days but think I’m also doing more to be honest .Its enough to make me stop and pause and regain breathe but isn’t “exhausting”.

‘My main issue has been that my peripheral neuropathy that I had post taxcel seems to have flared up,again . I have tingling hands again ( hasn’t progressed to numb fingers ) and there’s been some toe pain along with usual numbness of toes. Last time I had chemo I had a quick chat with oncologist and we will,be discussing next step at drs appointment next week - May be dropping dosage down to 75%. 

Thanks @noosa_blue150 for sharing all of that. I’ve had some heart problems with Taxol (a lowered ejection fraction and a small blood clot in my heart) so am slightly worried about TDM1. But that doesn’t sound too bad, my EF is back up to 62 with the medications I’m on so hopefully it can stay nice and strong throughout treatment!

I think I was just so bummed out at that the idea of “taking more chemo”. I know it’s not the same, but I had really set my heart on that phase being over. After a day or two, like you, I realised I am just so scared of breast cancer returning and this is actually a good thing: to have an effective treatment option on the cards to hopeful it vanquish this beast forever!

wishing you much good health & will be sure to check in again!

Yes I hear you about “more chemo “. The oncologist never mentioned the importance of the tumour completely regressing at surgery , not did she mention 3rd chemo ( I knew I was up for herceptin alone , which wasn’t that difficult bar affecting my ejection fraction but easy to treat ). It took me a few weeks to get over my reaction when she told me - I was in tears for a few days - but once I’d read up on Kathleen study I had to agree really .
overall it’s been ok regime , far easier than AC and taxcel BAR effect on my PN .

My hairs fine , did i mention that ? It won’t fall out again. Think it’s affecting nails a bit as they’re very frail and split but least nails not falling off 
Good luck with your treatment ! 

An update after dr review today - oncologist is thinking that my hand tingling may be caused by letrazole meds , so I’m going to stop them today before next chemo in a week and then we will see if tingling recedes ( or not ). I did have some foot symptoms a month or so ago but they did cease . 

Thanks @noosa_blue150 for the updates. I see my oncologist on Thursday to have that fun appt where you run through all the possible side effects ( :#) then start TDM1 on 20 August.  Will also add to these posts as I guess the number of people taking this drug will grow now it’s on the PBS for adjuvant early cancer therapy.

Thanks for posting here ladies. I’ve just had round 2/14 of Kadcyla following double mastectomy and reconstruction. I didn’t have a complete pathological response in one of my three tumours (5% residual active cancer). I’d had 6 rounds of EC-D plus Herceptin and Perjeta prior to surgery and was a bit gutted at the thought of “more chemo”. So far though the side effects aren’t too bad and my hair is growing back - which makes my three young daughters happy 😊 

Update - unfortunately I have now been moved onto,different targeted therapy ( a secondary cancer found in L3 vertebra , after I developed back pain , so I’ve had stereotactic radiotherapy to lumber spine and am now on perjeta and herceptin).

I did find the TDM-1 /kadcycla much easier to tolerate than the previous chemos  of AC and taxcel  ( and my hair,grew back, very curly) .nails not so great and splitting , and I did find I had to resort to regular coloxy to combat constipation. Regular echocardiograms still required along with cardiac meds to,combat heart issues but it’s holding at 58% ejection fraction . Wasn’t that tired compared to previous treatments either .I’m on hormone blockers as well so joint pain issues  I think were mostly due to meds not TDM-1 .
Radiation dr commented that when she reviewed all the bone scans/ CT/MRI/PET over the six months whilst on herceptin and TDM-1 that the L3 lesion was reducing ‘responding to the targeted therapies as well anyhow so that was good news although zapping it has reduced pain and hopefully stopped it in that spot .( the radiologist didn’t report a  “sclerotic lesion” in L3 until reviewing against more recent scan months later pst back pain  hence We thought I was on the home run with treatments for EBC  and incomplete tumour regression post surgery )

Hope new regime agrees with you ladies as well Jenk and riot at midnight