Kadcyla to Herceptin

Hi Sandra D sorry to hear you're having issues with neuropathy, how frustrating.  Like you, I was HER+ and I had chemo, lumpectomy and radiotherapy. I wasn't offered kadcyla, just 18 cycles of Herceptin. I know we all have different variations and therefore different treatments but I just thought I'd share.

As you almost half way through the kadcyla, I guess asking the oncologist about the effectiveness of the treatment to date is something to consider as well as the implications of the switch.  Best wishes 

Hello and thank you for your message. I was going to have Herceptin but the oncologist said as there was residual cancer in the tissue removed I was switched to Kadcyla.

How did you get on with Herceptin and did you have a clear margin first time after lumpectomy?

Best wishes

Hi, yes, clear margins and to be fair, the chemo killed everything beforehand so I had no active cancer cells left.  Herceptin was fine. I had it as IV along with chemo for the first 6 cycles then I switched to 12 phesgo injections. No side effects whatsoever with these. Best of luck in getting a clear plan that works for you going forward.

Hello

I had a 22mm stage 2 grade 3 invasive cancer which shrunk to 12mm, but after the first surgery there was cancer still present. 

I guess my oncologist needs to way up the pros and cons as although Kadcyla appears to be the best form of treatment it is giving me potentially permanent nerve damage which is not good so Herceptin has been mentioned as an alternative. I am mindful that Kadcyla has a 88% non recurrence rate compared to Herceptin 77% for my cancer, but can’t risk not being able to walk properly or liver damage as my liver is showing signs of inflammation.

How many years have you been cancer free?

Best wishes 

Another question, if the chemo killed all the cancer cells why did you require surgery?

Best wishes 

As I understand, the MRI didn't show anything but until they removed the effected area and biopsied that, and the lymph node, they couldn't be sure. Best wishes 

My surgery was August 2021, so coming up to 4 years 

H Sandra, so sorry you’ve had issues with the Kadcyla. I’m about to have dose number 11 of 14 tomorrow and did have some issues to start with. My oncologist reduced the dose for doses 3-7, I’ve been back on 100% since dose 8 and have less side effects. I still feel rubbish in week one with all the aches and pains but it’s manageable now. 

Have you tried ice socks? I got a set of socks and gloves from Amazon and put them on 30 mins before my infusion and it did help the neuropathy. I had it mainly in my hands so did a lot of massage and pinching of my finger tips each night. I also started knitting when my hands were good to try and help the nerves and brain connect better. 

I also started working with a functional nutritionist to look at supporting my body through treatment, managing the toxicity through anti inflammatory diet, liver and digestive support supplements etc. 

Herceptin is still a great treatment to reduce risk of recurrence but if you really want to power through with the Kadcyla, I’m sure your oncologist can help you find a way to continue in a way that minimalises the side effects. Wishing you strength and healing x 

Thank you for your supportive message. I spoke to oncologist today and he wants me to continue with Kadcyla. I am having a 50% reduction this Wednesday. Gabapentin is masking the neuropathy so the oncologist wants me to start reducing the Gabapentin by one tablet every two days to see how I feel. If the pain worsens  than I think I will be switched to Herceptin. 

Best wishes

Google cold socks for chemo & you will find a range of sox & gloves that help prevent neuropathy from chemo