Kadcyla - advice and help!

Hi, I had a similar experience to you re going onto kadcyla. Just to reassure you that although it is still chemotherapy it’s much milder generally in terms of fatigue and other side effects than the pre op chemo. Like you my cancer was her2 and ER positive I was told I needed 14 rounds of kadcyla after having a right sided mastectomy. This was also because they found a small amount of residual disease in the tissue they removed. So it is a pain having to undergo another year of chemo, but it is  bearable and not so brutal as the 6 rounds of pre op chemo. A lot of people seem to tolerate it well. What happened in my case was that I started having issues with aching lower legs and feet and some numbness in my hands which has amounted to mild nerve damage. My consultant was surprised as I think he felt most people tolerate it well. He also said it should get better over time. However, because of this issue and generally getting fed up of being on kadcyla for so long. I decided to only complete 11 of the kadcyla cycles. I asked if I could change to herceptin for the last 2 , but to my dismay it gave me not only bad digestive issues but I also got a water infection so I decided not to have my last treatment. My consultant was ok with this. I’d just like to add that after the 6 rounds of docetaxil etc, prior to my mastectomy operation I had also had 2 rounds of phesgo which is herceptin mixed with a chemotherapy agent. When I asked to change my treatment I was expecting that but I was given just herceptin on its own. Anyhow my consultant was happy with me stopping the then, as he pointed out the 2 prior rounds of phesgo, also he said they are not sure themselves whether we need a whole year of treatment or not, he said 6-8 months could be enough. They do not know. For me he felt the percentages of stopping were so small it didn’t matter. Also I had had 2 or so treatment breaks of 1-2 weeks for as I wanted a break and for a holiday.. Sorry I hope I haven’t scared you but that is my experience, everyone is different. 
Good luck

xxx

Oh I feel for you and can can sense how overwhelmed you are feeling. You are absolutley right doing chemo with a young family must be incredibly hard. Our children are older and we are still going through a cancer journey and I can empathise with your stress. Every cancer diagnosis may be different but the stress and strain it puts on families is a shared experience so never feel alone. 

Sorry JT23, for rambling on so much, it does have its scary and low moments. It is hard with young children. I hope you have.supportive family and friends.  I found  Maggies and Charlie’s cancer organisations to be very helpful, with their various groups and treatments. I also accessed some counselling through these groups and the NHS. 
xxx

I understand your reaction to having more chemo, I shared the same experience.  Diagnosis was June 2022 22mm invasive ductal carcinoma her2 + er+ pr+.  Had 6 rounds of docetaxil and Carboplatin along with Phesgo which was due to continue for another 6 months.  However, following surgery, lumpectomy and axillary clearance, there was a 13 mm residue so was told I needed radiotherapy, 5 sessions, and 14 rounds of Kadcyla.  I was devastated at the thought of more chemotherapy but was told it was in my interest to secure the best outcome.  I was 73 by the way.  I can honestly say I had little to no side effects at all which was a huge relief after the first lot of chemo and although the first round takes longer to administer the subsequent infusions are quicker.  Most people I have spoken to have had the same experience with Kadcyla.  I hope it won’t be as bad as you fear.  Sending best wishes to you. X

My story is almost identical to yours, I see the oncologist on 9 June to find out definitively if I will have Kadcyla . The most annoying thing for me (apart from another year of chemo!) is that they removed my port when I had surgery and will have to put in another for Kadcyla, which I’m dreading. I hope you don’t find it too hard, I hear it’s not as bad as Paclitaxel. 

I did all of my treatments via cannula, just didn’t fancy a port and everything that went with it.  Docetaxil did affect my veins in my hand but had no problems with the Kadcyla.  Hope it’s good news for you when you see the oncologist, if not you can do this, we are strong women. Xx

Forest, daughter had 14 kacyla cycles after initial chemo, surgery and radiotherapy. Her worst side effect by far was acute peripheral neuropathy in both her hands and feet. Like you, her oncologist seemed surprised by this. Daughter has researched and it seems many people suffer with this on kadcyla. Some oncologists stop the chemo if neuropathy becomes a problem, others seem to feel benefits outweigh the problem and carry on. Daughter is now 3 months post treatment and it isn't easing yet. She's still on gabapentin to keep it bearable. We're just hoping it will gradually ease.