Kadcyla treatment - any side effects?

Hi Clara69, I'm one of the champions here in this group and I just noticed that your post hasn't had any replies yet, probably as the site is quite busy.  I don't have the experience to answer your query myself,  but my response will bump your post back up to the top and hopefully someone will be along soon to share their experience. Best wishes 

Hi Clara, 

I am having kadcyla…I would like to reassure you that ( for me) it is much, much less impactful than normal chemo. I think of it as “ chemo light”. I have it every three weeks and the impact for me is the day after I am weak and tired and either stay in bed or potter. I do find I am quite emotional that day as well. The next few days I am low energy and don’t do much. After that I am just “normal low energy”… I don’t know whether that is the kadcyla or the cumulative of all the treatment over the past 10 months. Other main side effects are some diarrhoea ( which I control with Imodium). 
When I was told I needed kadycla, and especially when I realised it was a chemo drug, I found it emotionally difficult because I had thought I was done with chemo. And I really struggled to find much information on it ( hence my long answer to you)… however I am coping with it ok. Which is a relief as it is a long course of treatment! 
Good luck with it, I really hope that this part of your treatment is gentle on you. Xx

Hi Clara69,  I finished Kadcyla 2 years ago, 14 rounds and no side effects at all.  Nothing like previous chemo.  Had my final zoledronic acid infusion yesterday and rang the bell to say that’s me done.  Wishing you all the best with your treatment. X

Hi Penny, 

Thanks so much for your reply, this is really helpful. I had my first session earlier this week and since then have been feeling quite tired, not been sleeping so well and have had low mood. This could all be caused by something else, or just a case of getting used to yet more months of treatment and perhaps no surprise I'm feeling fed up!!

My first session was 90 minutes, and the next treatments are 30 minutes so hopefully a lower dose and I will get used to it. 

You are right, it is nothing like AC (which was really tough) and Taxol/Phesgo for me, and I have three weeks in-between to recover. 

So glad to hear you are coping so well with your treatment. It seems to go on forever, but I'm sure on I am on the homeward stretch now! 

Take care and good luck, 
C xx

Hi Mimosa, 
That's brilliant news! Well done for getting there and ringing that bell. So glad Kadcyla was easy on you. 
Take care,
C xx

Hi Clara, i was wondering how you got on with the kadcyla?. I received bad news today that there was residual cancer from my surgery results, despite no cancer seen on MRI.
 I go for further surgery very soon and then another PICC line and start the KADCYLA. I see the oncologist on Friday so will get more info. Dreading it all and the thought of more chemo. 
Are there the same side effects such as low white and red cells with this? 

Hi Rose, 

Very sorry to hear your news. It sounds very similar to what happened to me. No cancer seen on MRI but then residual seen after surgery and I needed more surgery after that, then radiotherapy and KADCYLA. 

I would say KADCYLA is nothing like the AC and Taxol/Phesgo chemotherapy I had before. I believe some women have no side effects at all on KADCYLA. 

Main side effects for me are: peripheral neuropathy in feet, slight loss of appetite, slight fatigue, leg cramp at night (just for a few nights after treatment), and often low mood in the week afterwards (not sure why I get low mood, apparently this is not a common side effect). Generally, I have side effects starting about day 4 after treatment and they last about 4 or 5 days. I feel more or less my normal self for at least two weeks in every 3 so it's not that bad. 

I generally go out a lot, exercise, work, lead a normal life so it doesn't impact things too much. I also think you get used to it. I'm almost finished now and it doesn't bother me too much. 

It's well worth doing because the research says it's very effective and really reduces the chances of recurrence. 

Hope that helps and wishing you the best of luck with it all. Let me know how you get on with it. 

Take care,
C 

Hello Clara, 

thank you for replying. Glad to hear it’s no way as bad as the previous chemotherapy. Did you have any problems with hair or nails? I had really bad anaemia with the previous chemotherapy so hoping I won’t with this. I too have had problems with peripheral neuropathy but in my fingers. 

 I did read that 1 in 5 people the cancer will return with Kadcyla. 1 in 3 if just had the herceptin. It does improve the odds. 

i asked my oncologist if I could have a portal fitted instead of a PICC line and they have agreed. I will be able to go swimming, kayaking again then. Also I always worried about my pets pulling the cable by accident with the PICC line. 

hopefully I will feel well on the whole too and go back to work too. 

I had my 2nd surgery yesterday. Hopefully they will have got all the cancer this time. No one has said anything about radiotherapy for me. 

glad to hear you nearly finished. How many cycles to go? 

I start kadcyla on the 8th June. 

take care and thank you for replying xx 

Hi Rose,

Sorry it's taken me a while to reply. I have had 11 rounds of Kadcyla with three to go. My hair has been growing back for some time and I don't think Kadcyla has affected it much. My nails also seem fine. They were affected by the chemo I had last year but have now more or less recovered. 

As I mentioned before, I'd say the main symptoms with Kadcyla have been some fatigue, a little constipation, low mood for a few days afterwards, some mild aches and pains, a little more peripheral neuropathy, but all manageable. I think some people get no side effects at all. 

I also have very bad anaemia with the previous chemo and very low haemoglobin but I've had no problems like that with Kadcyla. 

I've had a Port the whole time and it is definitely better if you can get one fitted. 

Good luck with it and let me know how you get on. It is definitely much more manageable than the usual chemo. I feel more or less fine most of the time, whereas on the other chemo I definitely felt more unwell. 

Take care,
C xx