Kadcyla side effect help

Hi - sorry that your first Kadcyla was so awful. I get the nausea & sickness. My neo-adjuvant was docetaxel & carbo. - that for me was brutal. Extreme diarrhoea & vomiting. Vomiting finally managed by daily Ondansetron, diarrhoea beat everything. But it was only 6 cycles; but would NEVER want to experience again. Your current nausea looks to be like my diarrhoea experience. Hope that hospital stay will get you back on the level & find something to quell the nausea. Pls keep talking to your team. They donā€™t let you suffer where itā€™s seriously effecting health & well being. Theyā€™ll explore all alternatives, including reducing dosages, changing regimes etc. I did experience random bouts of exhaustion - after 3 cycle generally had 1 day per cycle that I just slept like a baby - 15hrs! Also went through a mud section with increased muscle, joint, & general pain. Got a prescription for paracetamol & for some time added 8tabs to my daily meds. Rattling away. I found that the underlying side effects remained until last cycle (12), but at very variable & unpredictable levels. At the end June 2023, felt like my body had aged 10yrs & I was generally not healthy. The good news is that I am now cancer free & in remission. Health has recovered. Stamina back & im working on strength & flexibility with daily exercise. If you have someone on your team that you feel ā€œcloseā€, & opening up works I found that despite the number of patients they can identify us & connect. Keep posting, we are here to listen, support, hopefully do what we can to help your resolve. It hits all of us differently & each cycle is different. If you have the strength, maybe try cycle 2 & here is :crossed_fingers::crossed_fingers::crossed_fingers::+1::+1::+1::+1:. :heart:

Thanks so much for replying!
Sounds like youā€™ve had it rough too, but it is a relief that the side effects havenā€™t been so bad with 2 & 3. Hereā€™s to an even better 4th cycle for you.

I have spoken with my team and they were aghast that I had been so ill, questioning whether Iā€™ve had the flu at the same time which is entirely possible with two kids who like to bring home plenty of germs!

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Iā€™m so thrilled that this has worked for you and you are cancer free. What a feeling that must be!

Youā€™ll be in my mind when I go for my next cycle at the end of January. My team are reluctant to reduce my dose and are querying whether Iā€™ve had flu or something else underlying.

How rotten is docetaxel? I was allergic to it which nearly wiped me right out!

Iā€™ve gotta go back for cycle 2 - my surgeon said he wants me around for at least another 40 years so I canā€™t disappoint him after the amazing job he did of my reconstruction!

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Hi - you are sounding more optimistic & resilient. Hope so, I have a smile on my face as I ā€œhearā€ your words. Ah doce!!! Not sure whether it was that or the carbo but my team reduced both by 30% after c3. Plus I didnā€™t tolerate the dexamethasone. Mine were just side effects, not a reaction to the meds, so they reduced that by 50%. At least my nausea was then controlled by daily Ondansetron. :crossed_fingers: your next cycle. Ana x
PS :woman_facepalming: just found this in my outbox I sent. :joy: Just when I thought brain back to normal- or maybe it is. xxx

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Hi there! Really sorry to hear about all that you are going through with the Kadcyla. My partner has had her first Kadcyla almost a month ago and she has unfortunately not had a very easy few days after it. The forst four days were generally okay apart from the general fatigue that is possibly a cumulative effect from so many months of enduring chemo and then surgery. However on the 4th day, she noticed tiny little red bumps over her legs, inner thighs, back and chest. The fatigue was so bad that she cried , the muscle pain was debilitating, the headaches were bad and the feeling of nausea overwhelming all of a sudden. We rushed to the emergency, had bloodworks done and she was sent back and asked to monitor her condition continuously. The platelet count wad dangerously low, but not low enough to make the platelet infusion mark. Rest and many hot water bottles later, the pain went away, the red spots went away and she feels better now. It was a reaction to the Kadcyla - thrombocytopenia to be precise and it is a common side effect but something to watch our for especially after the initial infusions. We also found out that it is more common in patients of an Asian descent. However we have taken a break from Kadcyla for radiotherapy sessions for two weeks starting this week. She feels better and energetic enough so all is under control. Most people respond very well to Kadcyla ( thatā€™s what we hear) so do not worry, you will get through this :slight_smile: Sending lots of strength and healing vibes your way!

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Sending bestest of wishes to your partner. Hopefully the break during radiotherapy gives her respite. :crossed_fingers::heart_hands: as & when she returns to her Kadcyla regime. Axx

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I have just found out that I have to have 12 cycles of Kadcyla and the news has floored me to be honest knowing the possible side effects to come. I knew I would have more treatment but I was really hoping that after 6 rounds of chemo and surgery and about to have radiotherapy too that I would be very soon returning to work. And some sort of normal with my two kids too. Was also hoping to get this PICC out but that wonā€™t be happening. Iā€™m now not so sure about working through the Kadcyla treatment, especially after reading about some of the side effects and how people have responded to the drug. Would people agree that I need to wait at least to receive a few cycles to see how I react to it all before going back to work or deciding to what extent I can manage? Thanks

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Hi footie18, so sorry that the news of your post surgery (adjuvant) chemo as come as a shock. I donā€™t know what your original diagnosis was, but your total treatment is based on that diagnosis, plus what they find from pathology etc during your treatment.

Something worth remembering is that we all tend to seek help for our problems etc; not often will we post ā€œC8 of ā€¦ā€¦ & all still well with the worldā€. So itā€™s very hard to gauge how often & bad side effects are.

Please speak with & ask more questions of your oncology team.

Generally, the purpose of the chemo at the end is to seek out & wipe out the dormant/unidentified micro cancer spots/cancer DNA etc. The aim is to reduce risk of recurrence, secondary etc. Think of it as moping up what scans/visuals canā€™t catch. Boringly, ups your chances of remaining cancer free for longer - but no guarantees.

Your treatment runs like mine: diagnosis Jan ā€˜23; neo-adjuvant x 6 cycles; surgery July & Sept ā€˜23; Kadcyla x 12 cycles start Oct ā€˜23; radiotherapy x 15 days over Xmas & NY ā€˜23. It was a long haul but by Sept ā€˜24 able to complete Devon 2 Moors Way (110mile walking trail) over 10 days. Back to full health, cancer free & in remission. Long may it last :blush::crossed_fingers:.

Sorry - havenā€™t answered your question, but hopefully given you some thinking space. Oh my neo-adjuvant was brutal; with Kadcyla had tolerable side-effects. Sending love Axx

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Hi! Sorry to hear things are going to take longer than you hoped. I started Kadcyla on 26th November and have given it till now to return to work. Iā€™m having my 5th cycle tomorrow and feel confident that I can go back to work to stay. My job isnā€™t one where I could work from home, and involves shift work, so I wanted to give myself recovery time from my previous treatments (radiotherapy was also in Nov) and time to get my strength back up/feel better in myself before going back.

I discussed it with my team a couple months ago and they agreed that waiting to do the first 3-4 cycles before making a decision was sensible. I had a period of real fatigue in December as well and think that was from radiotherapy, as it was different to other fatigue Iā€™d experienced. It didnā€™t last too long, but just wanted to mention it just to re-iterate that youā€™ll still be getting side effects/healing after the other treatments :smiling_face: itā€™s totally up to you and you need to do whatā€™s best for you in your own circumstances too!

Iā€™m glad Iā€™ve waited till now and had a little more healing time/adjustment to Kadcyla. Iā€™m getting on fairly well with it so far (apart from my first cycle when I felt a bit rubbish but as Iā€™d mentioned earlier in this thread I was loaded with some sort of bad cold before I even had the Kadcyla which wouldnā€™t have helped!). My main thing now is blurry vision due to dry eyes so I make sure I use plenty eye drops/gel to counteract it

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@barca541 thank you. Iā€™m pleased to hear you coped well with the Kadcycla side effects. Iā€™m supposed to be walking a marathon and running 2 half marathons this year. Wonder how likely that will be now but we will have to see.

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Thank you @belle1. I appreciate your help. I am a Teaching Assistant so want to be able to cope with the day to day life of a school and not get caught by all the germs also upon return. I donā€™t want to go back and then be useless and have to have yet more time off because I feel rubbish. Iā€™m thinking of giving it the rest of the school year but my sick pay runs out in a few weeks so have to consider the finances as well as the practicality of going back. :cry: this whole process is a minefield for sure

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I donā€™t think the marathon or half marathons are out of the question. I ran a lot in the before cancer times and started again after surgery. Have continued running through Kadcyla and am starting to build up my mileage for an ultramarathon in September. Youā€™re probably not going to be setting any PBs and youā€™ll have to keep an eye on how the treatment is impacting your heart but it should absolutely be doable. Iā€™m currently travelling for work in between cycles 7 and 8 and walked about 21 km yesterday + went for a run with a local running club. I keep more of an eye on my HR than I would in the before times, so I can ensure that Iā€™m working to effort and not what would have been my easy pace back in the before times.

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Thatā€™s great that youā€™ve been able to keep up your running since surgery and throughout treatment. Really hope this will be the case for me too. I have been referred for an MRI for heart check and last echo flagged something not quite on the normal side so like you, I will have to keep an eye out for symptoms I guess. Not pushing myself for sure - easy pace and enjoyment is what Iā€™m searching for with my running and walking is so good for my head space.

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I took it all the way back to C25K when I started up again because I wanted to err on the side of caution. Build up slowly, make sure it feels right before moving on to the next step. It sounds like you are aware of your body and what normal feels like so youā€™ll be able to use that knowledge to adjust your effort accordingly. Iā€™ve done a lot of endurance events and training so I am hyper aware of what overtraining feels like and I think I get closer to that level at a much lower mileage/pace than I did before so I know when to back off. Itā€™s about being kind to your body because even if you donā€™t have a lot of side effects the treatment still is hard on your body. If youā€™re anywhere near Henley and want to run with a small group, pm me and I can share the info about our slow running club. Itā€™s mostly newer runners or runners getting back into running after injury/illness and itā€™s a really lovely low pressure environment.

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Hi
New to Kadcyla and received my first dose yesterday. On what day are you expected to get side effects if any? As I recall they should appear quite quickly. Is this correct?

Thank you!

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