Enhurtu

Do you suffer with breathing problems with lung mets? I’m really struggling my oncologist prescribed steroids but not making much difference xxx

Hi Lindz

Yes I do. He has just got me on steroids but my sugar levels have gone through the roof today. At most I can stand and do anything for no more than 10mins. Learning to pace myself at the moment. The problem is that the steroids are targeting the newly discovered brain mets, which I am struggling to get my head around. I've only had the steroid for 3 days but not seen any improvement in my breathing. I'll take my lungs on a test run on Saturday as WWE are prepping for my son's 21st birthday do on Sunday. I've got a leave of absence from the hospital for the day I hope.

How did it go today?

Sledge x

It went okay I’ve only just got back I did have to have an ecg first before I could have treatment even though my echocardiogram scan was ok apparently it’s routine. What have they said about brain mets? Does enhurtu cross the brain barrier lots of love to you and keep in touch xxxx

Hi Lindz 

Glad to hear that it went well. I will need an ECG/echo too. What's unclear is whether the brain mets were there at the beginning of diagnosis or a more recent development. I.e symptomatic or asymptomatic. If it was there from the outset then I can proceed with Enhertu. If asymptomatic then alternative treatment will need to be looked at. Not sure it's anything to do with crossing the brain barrier but more likely to be funding. It will be acceptance criteria for the treatment and also to prove effectiveness of the drugs when taken. (I think).

Sledge x

Good evening hope you’re ok? Just want to update on Enhurtu, I’ve had awful side effects, fatigue, feeling sick, ingestion weakness but on the plus side my breathing is a little easier. Hope all goes well for you please keep me posted xxx

Hi Lindz

Sorry I haven't got back to you sooner. Had a manic few days and kicking ass to get things organised with the oncology team. Had some bad news that tried to kick mine too but learning to roll with it. 

Anyway, sorry to hear about the effects your going through. Don't know if this is your first time, but I took a wait and see what you would encounter and try find ways around it. Stupid I know. I've had all the ones you mentioned in the early treatment when I first started but a couple of days in I started the runs and sometimes constipation, which I am still dealing with. Don't lose heart though, sometimes it's just figuring out what you need to do or meds to take to get through the worst part of the cycle.

First cycle will be rough but you are finding out how your body will react. Go with the flow and figure out what you need for each. I.e sleep for a couple of days, anti nausea morning and/or night, light meals. If that's toast fine or my go to cornflakes. Cold food helps me. Advice is to little and often but go with what appeals. My only advice is protein and carbs appeal to a lot of people but I found eating cooked veg and occasional salad helps too. I have to stay away from tomatoes. If dehydration becomes a problem the the veg becomes something to keep an eye. My last food bit I use as an emergency is the occasional protein shake. Hope all this helps.

I had my first cycle of Enhertu yesterday evening and Im definitely feeling fatigue and headaches, but I managed work at 6:15. I'm taking it slow and see what comes.if I have to stop I will. 

Breathing is ok today but I haven't done steroids yet and they seem to help.

Take it easy and don't worry too much.

Keep in touch if you need to compare notes.

Love Sledge x

Hi Lindz

Thought I'd give you an update. I may have been a little too optimistic with some of the side effects.

I've still got the fatigue and headaches this morning but hopefully those should ease up. My downer is food. My sense of smell is just as bad as before but the worst thing is I now have gone of savoury and being a diabetic is not a good thing. To add more insult to injury, the Enhertu infusion has glucose, the steroids kick your sugar levels up and I have another 2.5 weeks before I'm weaned off but not sure for how long and now I'm battling sugar in my diet and checking sugar levels 4 times a day. 

Oh the joy of food! Well I can at least eat cornflakes

Hope you have a better day 

Sledge x

Good morning I’m feeling a little better hope you are too. I’m struggling with food I can’t taste anything I eat lol. The dizziness and weakness been worse for me but I’m hoping I’ve turned a corner today and I feel better ready for school half term next week xxxx

Hi Lindz

I'm probably a day behind you on recovery  but I can be on my feet sometimes. Food has definitely gone a similar way. Any flavour too strong kills the appetite. 

It's good to hear you are feeling better, but you need to remember to pace yourself at school and may need more sit down breaks, so might be worth setting expectations early on. Early adjustments toour work is a trial and error and lots of communication with the people who can help you. If I am going too far, just tell me to butt out. I won't take offense.

Hope you have a great weekend.

Sledge x

lol no your definitely not it’s nice to talk to someone on the same journey. Your right though I did push myself to me nearly passing out because I’ve always been used to doing everything being a single mum lol thank you for your advice means a lot. It was definitely day 4 to 7 the worse but fingers crossed I’m at the back end of it now even though I’m still exhausted. Bath and early night for me haha xxxx