Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

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)

Topofthecliff I had sentinel nodes removed, but was plagued with seroma and infections afterwards, which has left some difficult to shift oedema and fibrosis, which has restricted my movement. Physio is happy with my progress and I am doing exercise s and massage religiously!

I am going for my 1st vaccination on Thursday. Will feel so much happier when I've had it!

Hope everyone got through chemo ok today. Good luck to the others who are later in te week, and those waiting for results.

@AlbertCampion yes, I think you me, @backformore and @Acinonyx2 are at roughly the same stage. Great news that you feel good at the moment - one thing I have discovered with this is to really value the good days. The dose of one of my drugs was reduced to 80% on this second cycle and I don't feel as bad as I did on the first when I could honestly understand why people declined chemo, I felt that bad. It is still pretty crap this time though with exhaustion and bone pain plus some nausea too.

@loubieloo4 that is far too long to make you wait! I agree with you and hope your GP can accelerate it for you. No wonder you are stressed with all the worry and your DH. Sending you a hug xxx.

I have got my constipation under control this time with the Laxido sachets though, so go me. They make me feel so nauseous though and I was wondering if there was a tablet version of the same drug but I don't think so. Does anyone have any suggestions of something to mix them with that properly hides the taste?

Why are pirates called pirates? Because they arrrrre!

@Backnomore I had FEC x3 then Docetaxel with HP x3 and although the Docetaxel infusion is a bit exciting (due to allergic reactions) I didn't get much muscle or bone pain from it. The bone marrow injections with FEC were much worse! Hopefully you won't either.

@FizzyOrange the Lemon and Lime Movicol is not bad at all compared to the Orange which is utterly vile in my view.

I had my radiotherapy planning CT scan today and now sport three tattooed dots. It was all very interesting and not unpleasant. Now I have to wait for a date to start treatment.

Best wishes to all.
Top

@TopOfTheCliff I had to laugh at "all very interesting" re your radiotherapy planning! That's the spirit :)

Yes, 3x FEC then Docetaxel! Snap! What does "a bit exciting" actually entail?? I'm encouraged to hear that you found the FEC injections (the wbc-booster, right?) worse. I've struggled with the first two of those - I have about 24 hours of feeling black and blue all over - more than the chemo side effects. My oncologist seemed to expect that I'd have pain with the Docetaxel and has prescribed dexamethazone for me to take the day before - not sure if you had this? Am hoping she's just erring on the side of caution but it got me rather terrified of the next three rounds!

@FizzyOrange, no advice re meds - but I've been going through prunes by the bagload recently!

@backnomore Some people get an allergic reaction to the Docetaxel (or to the HP) so they give you steroids (8mg x 2) for a few days to cover it. You don't need as much anti sickness stuff but they give piriton by injection before the infusion starts. If you get a reaction it is usually around 15 minutes in. I watched the lady beside me have one when I first went so next time I knew what was happening to me. I went bright red and got chest pain and tight breathing and felt faint. The nurses swooped in and stopped the drip then gave me IV hydrocortisone. After a pause I was fine and they resumed the infusion at half speed. I got there eventually although on my last dose the staff were all ready to go home before I was finished!

@TopOfTheCliff Gah, that sounds terrifying!! But good to know - I'll be sure to keep an eye on the nurses just in case. So the solution is just to slow down the infusion?

@backformore I'm on six cycles of EC with filgrastim injections on days 2-8. Yours sounds hard-going - I didn't realise they could change the meds halfway through a treatment plan. Are you having six cycles in total? I know what you mean about dreading the next round - I went in to have my PICC maintenance today and just being on the unit made me feel sick in anticipation of cycle four. I am definitely treasuring the good days!

@loubieloo4 That is a terribly long time to wait - you must be beside yourself. I would definitely see if the GP can prod things along. Given your circumstances at home, you are already under tremendous pressure and that kind of wait seems particularly cruel. Isn't that length of time massively outside guidelines?

@AlbertCampion Yep, that was the plan from the outset: three rounds of FEC, then three rounds of D with herceptin getting introduced in the final couple of rounds. So annoying to hear that the side effects are so different, just as I was getting the hang of the FEC!

Totally know what you mean about just being back in the unit bringing on the dread. I think it's all compounded by memories of the early days and diagnosis - so many bad associations. Today at least a lady I'd connected with on another forum and have been texting with for the last few weeks (we have similar diagnoses and also happen to live nearby, similar aged kids, etc) was also in for treatment, so for the first time even I had someone to chat with in the waiting area. It completely transformed the experience - was so nice to gossip and laugh with someone who gets it. So, at least now there are some happy associations, too...

I've been lurking on this board for many years, since receiving fantastic support when I had a scare. Just popping on to ask whether anyone has any news on InOtterNews? I check nearly daily to see whether she's been on again - it's very worrying.

@SuperMoonIsKeepingMeUpToo Indeed we are all eager to hear about Otternews.

@backformore @AlbertCampion Like others my drugs change similarly. I did 4 x doc/Her/Per then yesterday started my 3 x EC (no F). It's a standard protocol for my BC although many people do it the other way around. They are quite different. On EC I have stronger anti-nausea drugs but did still feel a bit sick yesterday. On the other drugs I didn't feel poorly until day 3 - I do wonder though if that's the flippin' injections. If the bone/joint pain is better this time I'll know it's the doc.

My doc was reduced to 90% due to neuropathy which I am hoping will fade off now. This varies a lot with people.

Like @TopOfTheCliff and @MrsPnut I had an allergic reaction first time to pertuzumab. Unfortunately I didn't realise what was happening for a little while as I was just getting colder and colder so it did rather kick off like John Hurt in Alien. All the nurses remember me. I was just saying yesterday that it's a shame I didn't get it on video for dinner parties. And yes - it was after 8 when I finally got out and staff were eager to see me go!

Top - have you had your covid jab and did they ask about your allergic reaction? There's note on some instructions online that anyone with any allergy to any drug is not being jabbed. Mrs Pnut mentioned they had advised her not too.

Albert - all my cycles have been so different in terms of sickness and wellness - quite unpredictable. Definitely learning to seize the good days.

Anybody getting any feedback on surgery timing - any delays?

Problem with feeling really poorly is that although I know, intellectually, that the treatment is keeping me alive - it doesn't feel like it. It wasn't that I was really feeling sick and the treatment improved my well-being. And it's such a rag-bag collection of odd things - things non-cancer patients would never think of. Neuropathy? Mucositis?

Much as I am loathe to be caught being unnecessarily positive I do think my general outlook could stand some change. I watched someone talking about working on being less negative and that struck a cord with me. I just assume that I'll relapse (to be fair, I am stage 3 so not unrealistic). I dread facing this again and I'm not even done with the first lot yet. There are phrases I no longer use because they imply a future beyond the next couple of years. Having a back-up plan for the worst is one thing - but I must try not to live there permanently. I think for me I needed to get a couple of months into treatment and 'cancer-mode' - perhaps our newbies will find this also - that it takes a few weeks to take it all in and find your path through this thing.

@Acinonyx2 my onc consultant said to get the Covid jab as soon as I can so I will press on and ignore the Dox reaction.

What you say about your mental attitude is interesting. When I was diagnosed a close friend was angry with me for delaying during lockdown and said I always see just what I want to see. She looks at my adorable kind husband and sees a scruffy engineer with too many bicycles whereas I see the handsome man who has cooked me every meal for 12 weeks and makes me laugh. I assume my cancer has gone forever with chemo because the alternative is too difficult to live with. It’s not denial it’s a habit of putting a positive spin on things. Grim reality is a bit harsh at present so let’s make it easier for ourselves.
Top

@Acinonyx2 The surgery rang me this morning to book my jab, I told them that my oncologist had said not to have Pfizer due to reaction to chemo and they just wrote it in the notes. I’m going for mine on Friday afternoon and it is my actual GP surgery doing it so I should know the member of staff as well as being able to walk there.

I’m seeing my surgeon tomorrow, will make decisions about type and dates then but as NHS have booked a lot of surgery slots at the private hospital, I may have to wait.

I went out for a walk with a friend yesterday and it really lifted my spirits. I was exhausted afterwards though and slept all afternoon but I still feel it did me good.

@loubieloo4 have you phoned up yet? They have a duty of care so cannot leave you that long.

I have to take 10 steroid tablets 12 hours and again 6 hours before each start of my 3 week cycles and 3 a day for 3 days after. Cue extreme constipation.

No sign of a Covid jab yet, just a letter saying I'm vulnerable and to stay at home.

@TopOfTheCliff when I had my 2nd Paclitaxel they said I might have a reaction but thankfully I didn't but another lady did as you described and it was terrifying to see.

Big wave 👋

HC x

@HumphreysCorner steroids are second only to those flippin' injections on my hate list.

Anyone who is now eligible can book at a centre using this link. But if you want to wait to go to your local practice you will need to wait for the invite letter/message.

www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/book-coronavirus-vaccination/

There are a ton of threads on the Coronavirus board - I checked it out and it's legit. They're just encouraging people to use the centres fully if they can get there.

I just booked on this site and it told me I had missed my first appointment! I checked and checked and I haven't had a message I can find. Booked 1st but looks like my 2nd jab may clash with surgery

I actually chose a school 30 mins drive away as I fancy a nice drive! Had to time it so I think I'll be up to it.

@TopOfTheCliff My dh is more like you - very sunny and optimistic. After all - how grim would it be being married to myself?? He does complain sometimes - and I also complain that he 'only sees what he wants to see'

If you're not actually eligible - the site above just won't let you book.

Good grief - I had no idea the allergic reactions to -taxel and pertusumab were so common! They sound terrifiyng. Am now well anxious about the next three rounds, which were supposed to be the home stretch. So far my tumour has shrunk to nothing the doctor can feel, so maybe I can beg them for lower doses...?

@Acinonyx2 I know what you mean about expecting recurrence, but I'm hoping this is something that will fade a little into the background as we learn to live with this new reality. A friend who had the same bc and treatment as I'm having did have a recurrence a year later (she was only stage 2) but the treatment that time was minimal and she's been fine for the last five years.

Agree with @TopOfTheCliff about the positivity stuff - I think it my case it's more a case of slight denial and self- preservation! When there was a chance they'd found cancer in my leg, as well, I only really panicked about the thought of further biopsies and surgeries, whereas my husband was the one who did all the reading and knew that a positive result there would have put me at stage 4 and a different ballgame. Fortunately, it turned out to be nothing.

@backformore reactions are uncommon - many of the nurses had never seen one. You are unlikely to join our select club! But one dr on the phone had told me all about it as a precaution and said that 'it will feel like you're in a movie but they're used to it - it will be fine.' I'm actually so glad he had told me so when it happened I didn't panic.

I think sometimes I find hope hard to live with - its a recurring problem that is particularly unhelpful these days!

Thanks @Acinonyx2 I used your link and booked Covid vaccine dose 1 for Saturday morning 15 miles from here. Hooray!
Also HMGovt has decided to send me 4 months supply of vitamin D !
I feel special

Yay to all the covid vaccines. I'm not at risk, so it'll be a while.

Hope chemo, radio and immunotherapy are treating everybody well. So many people that I haven't seen updates from in a while. Hope everyone is doing ok and just not got time to log on.

I'm on countdown to my oncologist appointment and finding out my tumour grading.

Some tangential good news. Dh just lost two thirds of his income in the pandemic and I lost half of mine going sick as I'm half self-employed. It's been a worry as we were starting go through savings which are not enormous. Being naturally pessimistic and didn't think he's get work in this climate but he just got a new contract though an old contact.

Dh is always optimistic and things do turn around for him after various catastrophes. I've celebrated by ordering a robot vacuum cleaner, some new wellies for dd and to practice optimism I'm planning a party summer 2022.

Day 3 EC. Feeling a bit sick but not too bad.

Well hello everyone! I have emerged from post-chemo miseries, so taking the chance to catch up properly.
Firstly a warm welcome to @BlueSkyAhead and @Livelongandprosper. You're definitely in the right place for handholds, advice, moaning opportunities and all the rest. BlueSky I hope you get a breast clinic appointment very soon, you won't be able to keep the big girl pants hitched up all the time, but I hope all the experienced women here have made you feel a bit calmer and more optimistic. Livelong good luck for Friday, hoping biopsy results are as good as they can be.

Chemo really is hellish, isn't it? Sending sympathy and fellow-feeling to @FizzyOrange, @HauntedDishcloth, @Acinonyx2, @AlbertCampion, @backformore and anyone else in the throes. Re feelings of gloom and despair, I find mine are entirely linked to my physical condition - when I'm nauseous and can barely eat or drink I'm a right miserable cow, but my mood lifts so much once that's past (and this time, so far, I haven't got mouth ulcers, touch wood).
@Noidea2114, it's so normal for weepiness to go along with post-surgical weakness. It will pass. Crossing my fingers that the surgery was very successful and that future treatment will be minimal.
@TopOfTheCliff glad you finally got the scan! Thanks for asking after my DP, she is doing very well, yesterday we had a walk in local wetlands that was about three times as far as either of us has been for over three months! (Must go back soon as a friend told me afterwards there is a kingfisher there.) The exercise and coaching programme sounds interesting and hopefully will be just the ticket for you - I do admire your commitment to recovering fitness.
@Lizdeflores hope you don't have to wait too long for scan results. I can't remember if you are having treatment atm, I think you had chemo then surgery?
@thereisonlyoneofme you are in a hard place for sure, having to think about end of life plans. Not having anyone to offload to - apart from us lot of course - would feel unmanageable to me. Apols if this is the bleeding obvious, but have you used any of the charity helplines, or could you afford to consider professional counselling? I'm now having weekly Zoom sessions with a therapist, and I can imagine wanting to carry on with that for the duration of my illness (I have OC too). I have a DP and other people around but I value her professionalism and emotional detachment.
@MrsPnut very glad to hear the breast scan results were good and I hope the meeting with the breast surgeon goes well. Also that your poor undercarriage calms down.
@gillmoregirl nice to hear from you, congrats on getting vaccinated.
@loubieloo4 I'm really shocked about your long wait for a breast clinic appointment. Is your GP no good at chasing for you? I wonder if there's any other way of complaining or putting pressure on.
@Acinonyx2 v good news re your DH's new contract. Your wait for scan results seems long too, but maybe normal for now . . Thanks btw for posting the link to Marie Curie funeral planning advice. Although I'm certainly not at that stage, I do want to sort out as much as possible in advance if things go badly.
@seizethecuttlefish I did wince when you said the skin had grown over your staples! Was there someone there to hold your hand?
Brief report on MEEE - sore cracked fingertips and numbness in feet, so I tend to stagger when I stand up, are very minor bothers now I can eat and drink properly again. And I have started tentative planning for a holiday in Austria in the autumn, which of course may not happen if there are still travel restrictions, but I reckon, even if I do need more treatment then, I should be able to take 9 days off. All by rail so DP is happy to do it.

Love and warm wishes to everyone here.

Hurrah for holiday booking! So good to hear from you Bridget, and that your mood and energy have picked up, it’s great.

Hi Bridget glad to hear things are starting to pick up. I'm very lucky to have a river behind my house(sounds grand but really isn't) and we occasionally catch a glimpse of the kingfisher and it's always very special.
I have finished chemo and started Bevacizumab for maintainence. My last scan showed no signs of cancer. At the moment my mental wellbeing is being chipped away by home learning! just waiting on my vaccination and then hopefully restoring my life.

Hello to everyone. I'm reading your posts but until I've had all my results google is not my friend,so I cannot begin to understand the treatments you are all undergoing. Just wanted to say I'm following this lovely supportive thread even if I can't post much on it at the moment.
Thank you for the welcome messages.
I'm so nervous for Friday, though I'm equally keen to get the results and to know what the treatment is.
@HauntedDishcloth You are right, I am a Trekkie at heart!

@Bloodybridget so glad to hear you are feeling better. Chemo can be a bitch and like you my mood plunges on the bad days.

@Lizdeflores great news about the scan. How old are the homeschoolers? Mine is 15 and I have just left her to it!

@Livelongandprosper another keen Trekkie and sci fi lover here! We actually had a wake when Leonard Nimoy died. I made my best Klingon Blood wine.