Hi everyone,
I have Her2 positive primary breast cancer which has been treated with neo-adjuvant chemo followed by mastectomy. There was a residual tumour of 13mm and as a result I am speaking with oncologist next week regarding starting Kadcyla. I suffered terribly on the chemo and also developed sepsis post surgery but I’m due to start back at work soon and I really need to for my own sanity and to get back to some normality - which on its own I think will be good for my health. I would be so interested in hearing from anyone who has managed to work on Kadycla. I will work 4 days per week but my employer has agreed to be flexible on the Kadcyla week. If you have had symptoms when did they start to kick in?
Thanks for reading and lots of love and best wishes with your own journeys xxx
Hi @pinklady3 Trust you are well. I see that you had posted 21 days ago regarding Kadcyla and working while receiving the same. My partner has just received her first infusion two days and she too is expected to be at work very soon. Was wondering if you could share how you are doing on the treatment in teems of SE and general overall getting back to work situation? Would really help us prepare better and set up expectations. Thank you. Sending healing and positive vibes your way
Hi there of course I don’t mind sharing. I’m yet to start. We are having a much needed family holiday before I do have my first infusion on 21 feb. I will share SE and experience of working with. I’m hopeful however because the HER2 nurses say most reported side effect is headaches for a short period which I think I could cope with. I had a few replies on another thread and I’m going to work out how to send those on to you. I heard from a couple of women who had the treatment whilst working and had coped fine. Sending thoughts and best wishes to your wife.
Hi again. The thread is called HER2 and need some buddies. Lots of help on that thread. All the best.
Thank you @pinklady3. My partner has has her first infusion last Tuesday and the weekend hasn’t been easy so far. Extreme body and joint pain and splitting headaches and a feeling of nausea. However the nurse did tell us that this might me expected for the first one or two infusions as the body is getting adjusted to the new medication. The weekend was spend with hot water bottles and eating light and nutritious soups and mostly resting up. Light yoga and stretching helped a bit.
Thank you
Also, I thought I would share with you that my partner has been able to work most days post the infusion. Regular movement every half an hour and not sitting for too long at one place helped. She set up reminders on her phone to move every half an hour, just a little walk around the house and keeping a hot water bag with her at all times. She took the week as a work from home and took off on the day of the infusion. She is expected to be back at work this week and we hope the symptoms are manageable to be able to do so. I will keep sharing her experiences to be able to help others going through the same.
I think the movement and exercise, if one can do it, really helps with managing any side effects. Especially on treatment days, if you can get out and do a walk or other training (yoga, weights, cardio, whatever you like) before you go in for your infusion. My routine is get up, do some strength work and drink a shitload of water before heading over to my infusion centre and I feel it’s helped me both mentally and physically.
I had nausea the first round and then nothing since then. Hope it will be the same for your partner @sms
Hi SMS sorry to hear about your partners side effects but hopefully they will improve as the cycles progress. Please send my love. I don’t know if you have thought about options for headaches. I have found codeine to be v effective as required.
Hi Kartoffel
I’m really pleased to hear your side effects have been limited to the first round. Do they give you anti sickness tabs with the infusion ? I have my first on 21 feb. Thank you for the tips re yoga and water.
Thank you @pinklady3 We are thinking of the codeine option, but just seeing it through for today if the headache subsides on its own. Also getting ready for radiotherapy pre screening for this week. An MRI and CT Scan has been booked along with a meeting with the radiologist this week. Keeping our fingers
They could have given me something, but I had some tablets left over from regular chemo so I just took those. I think I had multiple different kinds, so I just took one of them.
@sms is she also taking tamoxifen? I can’t remember if she was hormone positive as well. I had some bad headaches when I switched brands one time which went away as soon as I started a different pack. My oncologist sent me for a full body MRI just to make sure nothing was amiss but it turned out to be just the tamoxifen.
No it was HER2 + positive. Not currently on tamoxifen but we go and meet the team this week to figure out everything. It’s the fatigue of it all catching up as well. Never seen her so emotionally tired and that makes me very low as well. You want to do everything to make it easy for your partner but some days and weeks the unfairness of it all takes over. We are trying to keep our spirits up and hoping to get through this phase.
Yeah, I know how that is. Our downward spiral started in 2022 and some days I feel like I’m barely holding my head above water. This place and the ladies I’ve met through here have been a lifesaver. My husband is wonderful and he’s been through his own share of health challenges so he does understand a lot, but sometimes you need to talk to someone that’s going through the same thing as you. Does she have any desire to talk to anyone? Either on here, or the breast care nurses or through something like “Someone like me”? Someone Like Me | Breast Cancer Now
At the present moment she isn’t really in a mind space to talk to anyone yet. She says she will when she feels a little more composed , until then we try to sail through.
Fingers crossed. I’ve just had my first radio appt and it wasn’t bad at all. My arm has aches afterwards but that’s prompted me to do the exercises I was given.
@kartoffel im due to start tamoxifen and when I get home and I’m worried about the side effects from that. I didn’t know there were different brands available. Is it the case that you have no side effects since you switched brand? Thanks for sharing x
@sms understood. It’s good that she has you until then. Hopefully you’re coping okay? It can be rough when you want so badly for your person to be okay but there’s nothing you can physically do to change any of it. You feel so helpless.
@pinklady3 There’s a lot of different brands. I started on Tamoxifen in August and I think I’ve been on 4-5 different ones. Most of which caused mild menopausal symptoms (hot flashes mostly, but I’ve been having acupuncture to help with those). It’s only been one brand so far that’s caused any sort of real side effect and that was the headaches. I got my doctor to write a note on the prescription that I could have any brand but that one so hopefully it should work out next time I go to refill them.