Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

I've has private chemo twice now, first one was in a chemo suite at a genesis centre and I loved it but it is an hour each way and the only way I managed was because I was also having daily radiotherapy and they provided a taxi service for that so they took me in and my chemo was an all day affair and DH collected me at 5:30. My oncologist also did her clinic there on the day of chemo so I saw her weekly before I went home.

This time I am having healthcare at home, so the nurses come to my house to give chemo which I was dreading because of our dogs but it did work out quite well this week. I could cold cap at home but I have chosen not to. I could have gone back to Genesis but I can't drive myself and FEC is a much shorter treatment than cisplatin.

Thank you re. food suggestions. Smoothies and yoghurts sounds good.

Hello @MadamBuxton sorry you find yourself here but you’re in good company.

I’m just ahead of you and started treatment 3 weeks ago. I had my second AZ jab the Friday before a Tuesday start abs had no symptoms.

My oncologist recommended the port. He prefers it to the picc line. I was sedated and it was sore but they said I had tough skin! I also reacted to the dressing which doesn’t help. Anyway I used it for the first time this week and I found it easier than the cannula but I do apparently have bouncy veins The nurse said your skin in the area desensitises over time - a little like the eyebrow area. Given I’m on weekly chemo I’m glad I’ve had it done and it doesn’t interfere with sleep etc.

I should have added I am also private and they have been very accommodating about times particularly around school hours. It does feel relaxed and discreet. The nurses have a lot of time to talk to you. I will be getting my bloods done at hole the day before now so that will also save time on the day of chemo.

*home

Thanks so much for feedback on radiotherapy scheduling. I guess all the hospitals handle it differently. I will definitely be asking for a list of appointments when I go on Wednesday - I am stressing about juggling work, school runs and after school clubs with no notice of when I'll be unavailable.

For those asking about vaccination timing, I had six cycles of EC. I had my first jab in week two of cycle three and it affected me quite badly - I had to go into the unit because of my raised temp and I ended up getting cycle four postponed. Afterwards, the nurses said it is best to wait until week three if at all possible (they didn't say this when I asked them before I had it!).

Thanks for the input @MrsPnut and @quinin. I’ll definitely go for the port then and may as well give the cold cap a go. I’ve taken delivery of a wig today too so I’ve hopefully got all bases covered.

Can anyone who had EC chemo first tell me how they felt on their very first day and then for the next few days? I’m having 3 sessions, each 3 weeks apart with the first one probably next Thursday. I’ve got a meal out booked for that very day so I’m assuming it’s very unlikely I’d feel like going to that? I’ve got another meal planned 3 days later too for my and DS1’s shared birthday so I’m wondering if that will be a no-go too.

@MadamBuxton I had my 1st EC in the afternoon. Came home, thought “Oh, what’s all this fuss about?”, was business as usual, had a massive pizza for tea, and then.... BOOM! Sickness & nausea like I have never experienced before, and feeling I was falling apart, literally. I remember thinking “This is what dying must feel like”. I just felt so I’ll, barely able to move, was hugging the toilet bowl overnight, I mean, just grim, grim, grim. Because it was all new to me and I didn’t quite know what to expect it was pretty frightening. It got better after about day 5, but then again, it depends on your dose, I guess. My EC sessions were every 2 weeks (4 sessions in total). 2 postponements, one due to mouth ulcers, the other due to low neutrophil count.

I can’t say I felt any better after the 2nd session but as least I had an idea of what to expect. Which made me a little bit less frightened. Hair started to fall off after the 2nd EC session.

Oh dear @balkanscot that sounds intense. Had they given you anti-nausea medication before all that (not sure if it’s standard or just as needed)?

@MadamBuxton welcome to our lovely thread, I am sorry you find yourself here. Regarding the jabs, my oncologist said to have it in the third week as close to my next chemo as possible but if that couldn't be arranged, then to just take whatever date I was offered. It's good that you are having it before your chemo starts as then you won't have to worry that you have mistimed it and if you do feel a bit 'off' you will know it is due to the jab and not the chemo.

@MadamBuxton I had FEC not EC on Tuesday and I haven’t had any sickness or nausea so far but I wouldn’t have wanted to go for a meal that night.
I have been out this evening to take DD2 to rugby training tonight and DH and I went and walked the dogs. I’m quite tired now and will probably lounge around most of tomorrow.

Until you have treatment, you really don’t know how you will feel so I would keep plans loose and be prepared to bow out if you don’t feel well.

Hi @MadamBuxton - sorry you have to be here, but welcome!

I found that I felt quite sick after my EC chemo - the nurses told me it's really important to stay on top of your sickness medication and take it as soon as you feel even vaguely nauseous. My sickness was interspersed with feeling ravenous, which was quite weird. As others have said, everyone is different, but I would think it would be v unlikely you'd be up for going out for a meal that night. Apart from anything else, the emotional toll is likely to make you feel a bit shattered!

The other piece of advice I have about EC is to avoid eating or drinking anything you love while having it administered. I accepted a cup of tea while having my second one and I have been unable to face tea ever since. The association with chemo has become so strong that I only need to look at a cup to feel nauseous. But that might just be me!

@MadamBuxton 👋 hi. I have been diagnosed with triple negative breast cancer - currently on round three of EC chemotherapy with planned mastectomy. I'm also using the cold cap. Happy to answer any questions

Thanks for the advice everyone. So it’s vaccine Tuesday, port Wednesday, chemo probably Thursday and keep an open mind about how I’ll feel and plans I’ve made. Not sure what I used to do with my time before I had all this to think about!

@MadamBuxton I was given Granisetron to begin with (when I had finished with the 1st session, at the end, before they dispatch you home with a big bag of drugs) which I found pretty ineffective. Subsequently I was given Metoclopramide (after the 2nd session) which was far more effective.

So, in a nutshell, I wasn’t given anything before I had begun my 1st cycle of EC. I was also sure I had started feeling sick as soon as the “Red Devil” was being pumped into me. It made me heave as soon as that syringe with the red liquid appeared. (not envy)

@MadamBuxton good luck, it really is trial and error.

Oh god @AlbertCampion heaven forbid I go off tea because I’d have no idea what to do in a crisis. So I need to pack crap snacks and drinks that I don’t like wasabi peas and cherry coke here I come! I think I’ll tell the friends I’m booked in with for the meal to find someone else - they won’t be short of takers because bookings are like gold dust that week! I think you’re right about the emotional toll; on tough days, like when I’ve shared my news with a lot of people, I’ve found I’ve been exhausted by the evening.

Hi @PhannyPharts I’d be interested to know about your planned mastectomy - it that your choice or what you’ve been advised? Have you had the genetic testing? At the moment I’ve just been told there’ll be surgery and because I’m triple negative they’ll do the BRCA test and if it’s positive I might want to go for a bilateral mastectomy. And how are you finding the cold cap - it it working out for you?

Hello @MadamBuxton and welcome to this lovely thread we would all rather not be on. I too had BC and 3 x FEC and 3 x Docetaxel with H and P before surgery and radiotherapy.
I wasn’t as bad with FEC as @balkanscot but not many people are! I just felt like I had drunk a litre of gin and in fact have given up alcohol since. As an aside the Milk and More milkman delivers lovely alcohol free beer!
I would plan to be lying low for a week after treatment and if you are better it will be a bonus. I found the filgrastim injections made me feel utterly wretched from day 3 to 10.
The docetaxel was different, scary at the time of having the infusion as I reacted to it twice, but less ill afterwards just sore mouth and bum. I would say keep drinking as much water as you can and use all the drugs they give for side effects.
I lived on smoothies and cordial and rice pudding and put on a stone during chemo.I’ve just about got back to my prediagnosis weight now after 10 months.
It’s nice to be home after my sad stay with DM. My DB1 is a self styled expert on funerals as his MIL died recently so he is making lots of decisions and I just agree with him. DM is being wonderfully brave and open. She said she cries when she goes to the loo so we don’t hear her. I accidentally listened to an answering machine message from DF which made me cry a lot. He was such a lovely man it is easy to grieve his loss. Everybody is being very kind to me which weirds me out as I don’t feel I qualify for sympathy somehow. I’m actually quite cheerful as nothing will ever be as bad as the state I was in last year. It’s all relative.
Today I tidied up the basement kitchen full of clutter where I fell and broke my leg in October. It’s immaculate!
Best wishes to all and may your side effects and complications be minimal
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@MadamBuxton My MRI scan showed a second suspicious area that the ultrasound and mammogram missed. I was asked if I wanted to wait for a biopsy and I said no because we both agreed it was likely to be cancer. I told the surgeon I wanted the breast removed. I made the decision that instant. I just wanted it gone.

I have been referred for genetic testing and I'm waiting for the appointment. I have an older sister who is understandably anxious for it to happen. If it is positive for BRCA then yes I would consider having my other breast removed at the same time. Partly because they're more likely to be even if they both go.

The cold cap so far seems to be working for me. I have lost some hair this last week, but not huge amounts and no clumps. Just an overall thinning. My hair is fine and also greasy after one day. I take paracetamol before the cap goes on and tolerate it ok. I use dry shampoo and have had my hair cut into a manageable bob. I don't style or do anything with it so it never looks good b it it's on my head at least.

Just wondering @balkanscot what you’re like in normal life with regards nausea or sickness. I wonder if there’s any correlation between having a ‘strong stomach’ normally and coping better with chemo drugs.

@PhannyPharts very similar to me - I’ve had a third biopsy today on my second lump - they saw it on my first scan but the first biopsy came back neg (they must have missed it) then after it came up on the MRI they confirmed it with a second biopsy but didn’t get enough for the HER2 test, hence today’s biopsy. I would expect I’ll be going the mastectomy route too.
Is the dry shampoo because you have to limit washing your hair or just your choice for convenience? I’m thinking the cold cap might not be worth the discomfort if I end up with even thinner greasy hair that I couldn’t be seen in public with

@MadamBuxton I've always been a fan of dry shampoo before but the advice is to only wash your hair once or twice a week maximum with the cold cap and my hair would be disgusting if I did that

@balkanscot I feel nauseous when I see that red syringe too.

@PhannyPharts once or twice a week is uncharted territory for my hair I’m just off to add some dry shampoo to my Ocado order...any recommendations for mid/dark brown hair?

@MadamBuxton batiste all the way. They do one for brown hair specifically but I'm mousy brown / blonde and use the standard cherry scented one. The Asda own brand one I would avoid like the plague. Just didn't work and made my hair feel worse