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 donāt let you suffer where itās seriously effecting health & well being. Theyāll 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 ācloseā, & 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 
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Thanks so much for replying!
Sounds like youāve had it rough too, but it is a relief that the side effects havenāt been so bad with 2 & 3. Hereās 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 Iāve had the flu at the same time which is entirely possible with two kids who like to bring home plenty of germs!
Iām so thrilled that this has worked for you and you are cancer free. What a feeling that must be!
Youāll 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 Iāve had flu or something else underlying.
How rotten is docetaxel? I was allergic to it which nearly wiped me right out!
Iāve gotta go back for cycle 2 - my surgeon said he wants me around for at least another 40 years so I canāt disappoint him after the amazing job he did of my reconstruction!
Hi - you are sounding more optimistic & resilient. Hope so, I have a smile on my face as I āhearā your words. Ah doce!!! Not sure whether it was that or the carbo but my team reduced both by 30% after c3. Plus I didnāt 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. your next cycle. Ana x
PS 
just found this in my outbox I sent. 
Just when I thought brain back to normal- or maybe it is. xxx
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 ( thatās what we hear) so do not worry, you will get through this 
Sending lots of strength and healing vibes your way!
Sending bestest of wishes to your partner. Hopefully the break during radiotherapy gives her respite. 
as & when she returns to her Kadcyla regime. Axx
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 wonāt be happening. Iām 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
Hi footie18, so sorry that the news of your post surgery (adjuvant) chemo as come as a shock. I donāt 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 āC8 of ā¦ā¦ & all still well with the worldā. So itās 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 canāt catch. Boringly, ups your chances of remaining cancer free for longer - but no guarantees.
Your treatment runs like mine: diagnosis Jan ā23; neo-adjuvant x 6 cycles; surgery July & Sept ā23; Kadcyla x 12 cycles start Oct ā23; radiotherapy x 15 days over Xmas & NY ā23. It was a long haul but by Sept ā24 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 
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Sorry - havenāt 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
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. Iām having my 5th cycle tomorrow and feel confident that I can go back to work to stay. My job isnāt 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 Iād experienced. It didnāt last too long, but just wanted to mention it just to re-iterate that youāll still be getting side effects/healing after the other treatments 
itās totally up to you and you need to do whatās best for you in your own circumstances too!
Iām glad Iāve waited till now and had a little more healing time/adjustment to Kadcyla. Iām getting on fairly well with it so far (apart from my first cycle when I felt a bit rubbish but as Iād mentioned earlier in this thread I was loaded with some sort of bad cold before I even had the Kadcyla which wouldnāt 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
@barca541 thank you. Iām pleased to hear you coped well with the Kadcycla side effects. Iām 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.
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 donāt want to go back and then be useless and have to have yet more time off because I feel rubbish. Iām 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. 
this whole process is a minefield for sure
I donāt 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. Youāre probably not going to be setting any PBs and youāll have to keep an eye on how the treatment is impacting your heart but it should absolutely be doable. Iām 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 Iām working to effort and not what would have been my easy pace back in the before times.
Thatās great that youāve 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 Iām searching for with my running and walking is so good for my head space.
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 youāll be able to use that knowledge to adjust your effort accordingly. Iāve 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. Itās about being kind to your body because even if you donāt have a lot of side effects the treatment still is hard on your body. If youāre anywhere near Henley and want to run with a small group, pm me and I can share the info about our slow running club. Itās mostly newer runners or runners getting back into running after injury/illness and itās a really lovely low pressure environment.
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!
Hi! Iām sorry the news of kadcyla has been a shock to you. It was to me too. I did two rounds and gave up.
Everyone is different but, like you, with two kids the extended side effects after everything you have already been through seem unnecessary.
If you still choose to go ahead with it, give it a couple of cycles. There are options for dose reduction also so bear that in mind.
It wasnāt for me after my mum found me curled up clutching a life-sized Bluey cuddle toy sobbing my heart out due to the all over pain, dizziness and panic induced by kadcyla. 6 weeks after stopping and Iām almost back to my usual busy self. Iām also one week into being back at work and doing fine.
Good luck with whatever you choose x
@poppypetal20 I have had one round of 12 so far and had to have treatment paused based on blood work being very abnormal. Have very high liver enzymes and low platelets after only one dose. I had a weekend of severe paid and needed checking over in A&E in the end. Bloods thankfully have show signs of the liver enzymes reducing and therefore I have been told k can now carry on with the next round. It has been reduced though. Wondering if they will put the dose back up after a few doses of reduced rate? Will treatment be extended if Iām only getting reduced dose each time or is 12 rounds maximum the amount of rounds regardless of the dose? Have my next round on Monday so have everything crossed it goes well and I donāt get another horrible weekend. Best of flick with you going back to work. What treatment (if any) did they switch you to if you werenāt on Kadcyla anymore? X
Hello there! My partner has had two doses of her Kadcyla and is due for the thrid one this week. She had exactly the same symptoms on the first dose, extremely low platelets that lead to mild thrombocytopenia, for which we checked into the A and E, but they sent us back asking us to just monitor the situation and rest. My partner was in extreme pain for upto 5-6 days hut then slowly recovered and was back to normal. When we got the blood works done thr second time around, the platelets were okay but the liver enzymes are going up it seems. However when we met with the oncologist yesterday, he told us that once the dose is reduced they cannot ramp it back up as per the guidelines, although the number of cycles stay the same. We are hopeful the liver enzymes will also come under control slowly around the third time around. The side effects for her the second time around were much milder and the muscle and joint pain much more bearable. I think the initial few dose or two, the body takes time to adjust to the new concoction of chemicals hence the symptoms. However please keep a very close watch on your platelet count and any related symptoms. And do not feel even an inch of hesitation in visiting the doctor again and again until you have clarity. We have been on the hospital telephone line for hours and not giving up until we got an appointment. The doctors sometimes tend to make your pain look like regular " oh but thatās the thing about chemo treatments, blah blah" BUT you gotta advocate for yourself as much as humanly possible. All the very best for your next dose, and hust sleep it out and do minimal physical activity once and if you feel the body pain kicking in. Hydrate yourself and eat super healthy. You will get through this ! Hereās to all the Kadcyla people!
Hi all. I too had a big shock hearing the length of my Kadcyla treatment and am still struggling with it but waiting on therapist appointment. The radiotherapy fatigue was quite something and the first Kadcyla treatment felt similar. Nausea and acid reflux bearable. Now my liver enzymes are wrong for my 2nd treatment so having an extra week. This has added to the dispare of ever getting through another 10 rounds. Does anyone know if you can do anything to help liver test results? I dont drink alcohol, decaff coffee and tea, fresh food diet, walk and cycle regularly.
Hi there. Completely understand the shock of it all and the thought of having another phase of chemotherapy with Kadcyla. My partner is still angry about it and we are trying to figure this out with her therapist to help her settle down with this phase. Regarding the liver enzymes it is the same for us too and what the oncologist told us was that nothing much can be done to get the liver enzymes under the recommended limit. Just rest well, eat healthy and the usual exercise and movement bit which I think is basically every person going through treatment tries to get on with. I am not sure what can be done about it, but please do share if you are able to get some answers wrt liver enzymes. We are equally clueless. Sending you healthy and healing wishes and I hope Kadcyla is kinder to everyone getting it.