Kadcyla 2026 Group

Going through breast cancer treatment Targeted therapies
183

Hello everyone, I haven’t posted for a while. I’ve had my 10th kadcyla, and now mid cycle , and finish in August. After a rocky time about cycle 8, when I felt really crap, mostly achey ( we’d gone for a short holiday to Paris and Normandy, but came home 3 days early, as I felt so rubbish). They reduced my dose after that, by 20%, and my peripheral neuropathy has not got worse. It’s there all the time but mostly I can ignore it, and apart from being weaker on my affected side ( dominant hand, nerve damage from the armpit disease too, which I fear my be permanent), I’m ok. I never had ANY nausea at all, during chemo last summer, or kadcyla since October; nausea is such a very individual thing, and I’m sorry for anyone who has struggled with it, ditto headaches . About repeat CT scanning; it’s not part of follow up routinely I’m told, but I have had one about 3 months ago because I was so worried that I could feel recurrence in my upper back and shoulder. They found some Inflammation in my lung, which I have no symptoms of( no shortness of breath or cough, and my repeat heart scans have been fine)… ofcourse I immediately thought ‘inflammation ‘ might be masking tumour recurrence( catastrophising , as is my habit).. anyway they are repeating that scan next week, to ‘confirm ‘ that what they saw is not metastatic. So I’m both scared and pleased to he rescanned. I actually dread being discharged from close FU , as then it’s just a case of looking out for new symptoms myself.

But, generally , kadcyla has been ok; this cycle , like most, I’ve had no symptoms at all, and I keep very active, go out, see friends etc.

I’d be really interested to hear from someone who has finished 14 cycles, and who has had neuropathy… did it get better for you? I don’t suppose those people are still on this forum.. they probably just go and get on with life!

By the way, I too had a horrible time with itchiness, or picklyness, intolerable, but it actually PRECEDED my cancer diagnosis; it was driving me mad, and I started on gabapentin for it ( very effective), but the amazing news is that it’s all gone away! A distant memory. I just hope it’s gone forever.

Love and best to you all. Try to keep positive and as busy as you can.

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184

Hi Imack

I take magnesium , mainly for cramp, and it really helps. I hardly get it at all now. I’ve taken it in and off since before cancer. I don’t get headaches/ mild graine but as a retired GP myself I know it can help ans is part of several meds regimes from hospital, eg for cardiac problems( heart attacks etc). Also, in my case, my magnesium levels kept dropping while on chemo and slightly on kadcyla and I was put on daily sachets to put in water; that was fine and my levels picked up again and I now take two tablets at bedtime. Recommend!

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185

Hi Imack, like you and us all I expect, that feeling of going from one appointment to another has become a big part of life; in my case I have also been seeking TWO different physios to help with nerve damage and weakness( much better now though I accept that I will probably have some residual damage to my right hand permanently. Also some mild but annoying oedema in right arm, but MUCH improved over time. I’m now 15 months from my diagnosis , and will finish kadcyla in August ( that’s the plan); I slightly worry about NOT seeing the oncology team every few weeks. They’ve become a bit of a crutch. I I’ll just have to self-monitor after that, looking out for new symptoms of recurrence! Worry and some permanent health anxiety must be pretty universal … I was never an anxious person before. ‘The body keeps the score’ … we are all , to some extent, scarred by this experience for ever. I keep really busy, active, four grown up daughters, lots of friends, but still WORRY. I even worry about being a cancer-bore, apologising to my girls when I update them about my latest twinges….they assure me it’s not boring, but it bores ME.

Sorry, I’m splurging now. Feet on the floor! Must get on!

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186

Hi, thank you so much for sharing.

I know what you mean about oncology team being a crutch. I am not even near the end and I already worry about recurrence. It’s something I am working on with my therapist.

Sadly, my phone algorithm has also picked up on the fear and is now presenting every quack in the book. Like, I know I didn’t cause my cancer, I was super healthy ate really well etc., so why would I think I can prevent any recurrence if that’s what it’s going to be, it won’t be prevented by ashwaganda and a**l sunning and eating sticky weeds out my garden :rofl:

Keeping busy is vital thankfully my gorgeous, and way to smart, toddler keeps me on my toes. hope you stay healthy x

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187

Hi @tessie86 has your headache improved? I’ve had a headache exactly as you described since yesterday evening. I thought maybe it was because I’d overdone it a bit but wondering if it is a side effect…:thinking:

188

@londongirl ive had a really stressful week at work which hasnt helped but the headache stayed all week, today I have nothing. But it wasnt a horrendous headache all week just more as if I had one too many drinks the night before, but could take paracetamol to ease it. Hope yours improves soon :slight_smile:

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189

Urgh I am so sick of this BS. Just had my second round Godzilla Tuesday and right on Queue I have something akin to tonsillitis. Just started a new job so don’t really feel comfortable bunking off the first week.

I just want all this shit to end. Had a meeting with the working through cancer network at my new job and everyone said how inspirational and brave I am, meanwhile I feel like my life is on hold and like I am terrified 24/7. My partner is also at the end of his tether and noones really there to help us as everyone’s dealing with their own shit.

Sorry to be so negative but just really need to vent to someone who understands the fact that I may look okay but I am so far from okay and keeping this appearance up is just so tiring!

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190

I’ve nothing useful to offer you other than a sympathetic ear and a broad shoulder. I’m so sorry you’re both dealing with this and are feeling so alone with it. The age old problem of people thinking that because the cancer is gone, you’re better now.

We all know that’s not the case. You may feel alone, but here you are definitely not alone, even if knowing that doesn’t change anything, at least know we’re all with you in spirit. xxx

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191

Hope your tonsils have improved! So wearing what people say when you’re just trying to survive as best you can day to day. Any option to wfh while under the weather? Could sell it to them as not wanting to pass germs around :laughing: hope new job is going well otherwise :face_blowing_a_kiss:

192

First Kadcyla infusion done this morning! :white_check_mark:

Headache has got worse over the afternoon (did have one before hand so possibly not all due to Godzilla) and have some lower back/hip joint aches.

Just wondering if anyone else is given steroids (dexamethasone) with their infusion and to take home?

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193

@kcim Steroids are not common from my experience, but it does come up about once a month in my other kadcyla group. I think it’s more frequent in the US for whatever reason.

@lmack95 have you ever had tonsil stones? It’s one of those lovely things (like UTIs) that seem to happen more frequently to menopausal/immunocompromised folks. If you’ve got a water pik or a syringe you can shoot some water or mouthwash back there to try and see if anything gets rinsed out.

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194

Slowly getting there. Thankfully WFH mainly anyway but still feeling like I can’t rest etc!

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195

I didn’t get steroids offered, maybe it depends what passed beforehand? I also didn’t get any when I switched to paclitaxel so maybe it’s a case by case basis?

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Oh maybe I hadn’t thought of that. Whatever it is it’s disgusting :rofl: