I have been on herceptin and now kadcycla (TDM1) ( breast and now liver) for over two years - my left vetricle ejection rate is slightly down to 55% by my blood pressure is beginning to soar - around 166 - 170/ 95-102. I am a vegetarian and walk about 30mins a day.
i am determined to keep up with the kadcycla for as long as I can, but want to know how best to reduce the risk of coming off it for heart and blood pressure problems. I am going to see my GP to explore mess, but I was thinking idpf anyone else had similar issues.
Have a liver met 31 mm which is now shrinkiing, but onc has advised to stay on kadcycla for as long as possible.
Hi samantha, like you I was on herceptin (10yrs) and now kadcyla (14mths). I have just had a MUGA scan to measure my LVEF but not had results yet. Mine is normally around 56 but I really am a bit worried this time as I have pitting oedema (puffy ankles up to mid calf) but no problem with breathlessness or chest pains. My pulse/heart rate and bp have been higher than normal for me for some time now. Normally bp is around 128/65-72 but generally now around 148/80 heart rate about 125! so not a good picture generally. My onc also wants to keep me on kadcyla as long as possible. My platelets struggle and dont really begin to recover until around 6 wks after treatment so we now go for that - a 6 week gap each time. But it looks like each 6wks platelet count isn’t as good as previous one. I dread being told they aren’t going to continue kadcyla as I believe that the only drug that does anything for me needs to have herceptin as part of its makeup and have been told NICE will not allow us to go back onto herceptin and there is nothing left that we her2+ girls can have on the nhs that includes this drug. My consultant has said that if it comes to it he will appeal against this for me but doesn’t hold out much hope. How is your platelet count holding up - and your other bloods? My secondary problem is extensive bone mets - I dont have any organ involvement.
This post has scared me to death I’ve just had my halfway scan been on docetaxcol h and p so hoping it’s working I’m panicking now since you said there’s nothing else after the one your on I’m stressed out. I hope you are both ok and can continue. X x x
julz I am so sorry that my post disturbed and stressed you like this. Maybe I didn’t explain myself clearly enough - there are lots of treatments available should you have to stop kadcyla. My bc diagnosis was back in 1990 when her2/herceptin was not known about and so over the 12 years with primary bc I had a number of different chemos but none of them were really effective in holding back the onslaught of bc. Moving forward to 2002 when I was dx with extensive bone mets and more chemos my onc wondered if I was her2 positive (I was er/pr neg) and a sample of my last tumour was tested. I was her2+++ and put onto herceptin straight away in 2004 and the effect of that drug to me was nothing short of miraculous. I had 10 more years of relatively stable disease. In 2014 onc switched me to kadcyla as he was getting worried about the nerve root compression I had in my lumbar spine(not spinal cord) and hoped kadcyla would stop the ongoing slow progression. My fear now is that if I have to stop kadcyla and am not allowed to go back to herceptin I just don’t believe that any of the chemos still available to me will work. Maybe I am wrong but my cancer reacted so positively to herceptin I think I need to have that protection alongside any other drugs.
So I think what I am trying to say LOL is that if we her2+ patients are taken off herceptin and onto one of the other drugs like kadcyla (which is part herceptin) or pertuzumab plus herceptin and not allowed to return to herceptin should those other treatments have to stop for whatever reason what will we get that is specifically created for her2+ patients. (sorry this is a long sentence but I hope you get what I am trying to say).
When I spoke to one of the oncs that I see she said in her country (Italy) they would put a patient on a course of kadcyla and then switch back to herceptin, Then if the cancer showed signs of progressing again they would have another course of kadcyla.