Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

@TopOfTheCliff thank you and it's good hear you had such a good response to treatment. I'm told that docetaxel is great for "melting away" tumours, though I currently feel like it has melted away some of my insides as well. Anyway yes I'll be staying on herceptin (either phesgo or kadcyla) for up to a year.

I'd be interested to hear any recovery stories really - I know I won't be able to drive for a few weeks post mastectomy but was unsure if I'd be able to get out and about on foot within a reasonable timescale - I need to make plans to cover the school run. Also pain levels, was sleeping difficult etc (though I know everyone will be different).

Good luck to everyone with appointments today.

Im nervous too although in a way I think I can be more honest with him then if I was with a work friend. Lets hope the first thing he doesnt say is “have you got someone with you?”

Good luck to both of you and you are not alone you have our invisible army behind you too. My experience ( and I almost always go alone as DH is allergic to hospitals) is that your brain runs much slower than the conversation and although you can take in the facts it takes longer to process frightening information. The obvious questions only pop up after you have left the room. That’s when you need the specialist nurses to follow up with afterwards.

All well here. Plodding along (literally) and nearly at four weeks post hip replacement. Can’t ramp up the exercise until I am fully weight bearing and that won’t be until after March 11. I will try driving this weekend though. DH bogged down in death admin for MIL now while SIL does 24 hour care for FIL. Trying times! But we all get on well and are looking after each other. I am so lucky to be part of such a lovely family.

Yeah what @TopOfTheCliff said

I definitely feel that there is an army of you guys behind me, and me behind you too

I write everything down during the appointment, and I still end up with questions afterwards, that I email the lung nurses about

I go to all my appointments alone. Someone drives me but I do the actual appointments alone.

@tothelefttotheleft I also go alone. I walk to and from them as well, gives me a bit of breathing space and time to gather my thoughts.

I don't always tell people when they are either.

And best wishes for everyone at appointments today.

Well, good news for now. He said the cancer in my left lymph notes is smaller and less active😃the only fly in the anointment is that I have bilateral adenopathy (?) it showed on the PET but not the MRI. He feels it could well be inflammation from the radiotherapy in September. Repeat scans in April.

Hurray for good news for now @EachandEveryone . (I haven't been on this thread much lately, but I was thinking about you the other day when I drove past the Lost Village site - I remember chatting about it last year. I'm glad to hear you're doing OK.)

Yes 🙌 ve booked again this year and know absolutely no one on the line up

I'm just in...from a 4pm appointment 🙄 Saw a completely new consultant who was actually really good to chat to! He came across as dithery old man (sort of made me think of my 70 yo dad working the computer & asking the BCN to do things she was already on with), but chatted through a lot of random things.

He's unimpressed with cardiology - I was telling him about my MRI woes, and how the echo they looked at was 6 months out of date when they eventually wanted to see me in their clinic.

He said stop taking the ramipril - the 1.25mg dose is apparently negligible (sp?) & my BP is normal. He was not impressed with the telling everyone that stopping the spironolactone was because of creatinine levels creeping up when it was following a conversation about weight loss. He also pointed out that that can be caused by several meds 🤷‍♀️

He need not fear - I have alllll of it ready to quiz the cardiac reg & remind him I'm a person...not a number...despite what he thinks.

He also said there's no reason to stop the abemaciclib before my tooth comes out 🤷‍♀️ totally opposite to what I've previously been told.

Aand, another bit of tooth has come out since getting in 🙄 at this rate it'll all be out by next week!

Shower...sit down...bed time now!

@EachandEveryone That sounds like fab news! Here's to less active lymph nodes and good scans! ❤

@lucysmam So how are you feeling about the new consultant? Is he taking over your care, or was he just a one off appointment?

I've done 3 (partial!) days of work, and I'm concluding that work is overrated. My team seems to have saved all their big problems and hardest questions for my return as my boss wasn't particularly helpful. Which might be why she's been fired. I'm taking over a lot of her work now, and it's mainly boring admin stuff... Yawn. However, I've got 3 rather exciting business trips coming up, one in April, one in May and one in June, and HR approved my request for a "reasonable accommodation" in the form of an upgrade to premium economy or business class on longer flights so I can be more comfortable. That's something! All in all, it's nice to see everyone and to use my brain again.

Infected thigh wound looking better, I think... At least a bit.

Wooooohooooo
For all the good news 🤩👏🏻💪🏻

@EachandEveryone that is great to hear! 🥳

@lucysmam one of my oncologists was a 73 year old man who wore a bow tie and dyed his moustache pink in October. He was absolutely up to date on the latest research and very kind and wise. I am glad you were listened to today.

@KentishMama take it steady and don’t get pushed into doing too much too soon. It sounds like they need you badly so you can dictate terms. Well done!

I had a lovely walk today rambling round my hilltop with my crutches. I’m trying to take it easy. Two more weeks to go till I can ditch them.
Here is a fun sign I saw

@demivolte Welcome to the thread.

I am another Her2+++ but Hormone Negative breast cancer patient. We are rather rare among breast cancer patients, at around 4%. There are a lot more Her2 positive patients, but the majority are also ER+ so oestrogen positive.

You are stage I, that is excellent news (obviously in the context of the horrendous diagnosis of having an aggressive subtype of breast cancer). This will mean your prognosis is likely to be really, really good because there are a lot of treatment options now for Her2 positive BC.

I was stage 3c or T3-N3-M0. I had a complete response to neoadjuvant chemo & antibodies, with a post surgery stage of ypTIS-N0 which means they only found DCIS remaining. My oncologist told me that DCIS is not cancer so I had a complete response.

You mentioned being on Docetaxel. Are you also going to be given trastuzumab aka Herceptin? That's one of the Her2 targeted therapies that have made Her2 so much more treatable these days. I was on that and another similar one for 18 cycles (being stage 3 they put me on more chemos and monoclonal antibodies than you will need at stage 1).

Good luck, and I hope the treatment works well for you. There is a very, very good chance that it will xxx

---

Edited - I'd written Paclitaxel instead of Docetaxel

@KentishMama I'm not sure whether he's permanent or not - I wouldn't mind tbh. The whole time I was asking random questions, he was clicking back and forth between old blood results/ct scans/bookings/prescriptions, showing me what he was looking at, & I felt like he was actually there iyswim & taking onboard what I was saying, rather than just ticking the "seen this patient in person" box. It made a nice change.

And actually, maybe going alone wasn't too bad either. Gave me plenty of opportunity to ask the random niggley stuff.

I did realise this morning though that I forgot to ask what might be going on with my lashes and brows!

I hope you're not overdoing it @KentishMama ?

@TopOfTheCliff your sign made me smile. Yes, I think I may have judged by his appearance and behaviour when I first met him. He was much more open about what he was looking at & explaining things to me than I'm used to.

We've just been to a GCSE options evening for dd2. She's not sure what to do & is a bit overwhelmed I think. I've sent her for a shower & pj's to calm down a bit.

@SummerCycling thank you for your message, and sorry to hear of your diagnosis. I am fortunate (in the grand scheme of things) that mine has been caught early.

I hadn't realised that hormone negative/her2 positive BC was so rare. I've had real difficulties trying to explain to friends/family that there are different sub-types and so my treatment may not be the same as other people they know who have had BC.

I have been having phesgo (trastuzemab and pertuzemab) alongside chemo and will continue with that for up to a year, or if residual cancer is found at surgery I'll move on to a different chemo which includes trastuzemab.

I hope you are doing well post treatment xxx

@demivolte Thanks, yes my diagnosis was horrible. A different hospital beforehand had messed up so it was missed at an earlier stage. I then had to really fight to get my appointment and there were weeks of delays. I struggle to avoid anger, frustration, and the feeling of abandonment and mostly do manage but sometimes it gets me down somewhat because Her2+++ HR-neg by stage 3 isn't good. Thank goodness I got pCR, which is at least something to counteract all the high risk factors. At stage 1, your prognosis will of course be much, much better, and that's how it should be.

I can imagine the difficulties you're having explaining the breast cancer subtypes. There's a lot of ignorance, even among MacMillan nurses. The extremely high % of breast cancers that are ER+ mean that people automatically assume we are all ER+. I've had people say to me that everyone is ER+. Rather depressing when we are ER negative and because of that fact need harsher treatment and have a less favourable prognosis. You will continue to have people assume you are on tablets for 5-10 years...

It was Phesgo I was on too. I didn't want to overwhelm you in my first reply to you in case you didn't know about the monoclonal antibodies yet (I don't think you'd mentioned them). I hadn't realised stage 1 qualified patients for Phesgo; I thought it'd just be trastuzumab, so that's interesting to hear you're also on pertuzumab.

I imagine it's Kadcyla you'll be on if you don't get pCR then. That was my treatment plan too in case of residual disease. As it was, I continued with Phesgo. I'm not on any cancer medications now, as there is unfortunately no maintenance therapy available for our subtype yet.

I also had EC chemo for 4 cycles which I don't think you're having. It was absolutely horrendous. The taxanes I was on (paclitaxel in my case) after that caused neuropathy and I stopped them early due to unbearable symptoms. From what I've heard, docetaxel causes less neuropathy and I hope you don't develop it.

Thanks, I am doing reasonably well xxx My body suffered a lot from the treatments but I am receiving help eg lymphoedema clinic weekly, and other appointments with consultants coming up to deal with other issues. The fear of recurrence is difficult to live with but there is no choice, it is how it is and I do try to do something enjoyable every day.

Much love xxx

@demivolte

I also meant to say I was Grade 3, so super aggressive. Do you know your grade? I heard that Her2 is always aggressive, so never grade 1, often 3 but sometimes 2. I hope yours is 2. xxx

Being stage 3 I had full lymph node clearance too, all three levels. 3 weeks radiotherapy to axilla 2-4, chest wall and mammary chain whatever it's called.

I imagine you won't need your lymph nodes removing, which is fantastic, so much better. Your risk of lymphoedema will be minimal I think.

@SummerCycling it sounds like you have been through an awful lot, I really hope things improve for you.

I am grade 3, I could see the lump increasing in size in the time before diagnosis and treatment.

It is kadcyla that I'll go on to if residual disease is found. At the moment I'm having mastectomy and lymph node biopsy done and then I'll have lymph node clearance separately if that becomes necessary. I think I've been told the chance of that is about 20% though I may have got that wrong. I also vaguely recall being told that the treatment would be based on the assumption it had spread, so that may be why I'm having the phesgo (but again, I may have misunderstood, there was a lot of info to take in at first).

I've had my last round of chemo now, thank goodness as it has not been pleasant. I've got some neuropathy but it isn't too bad, mainly just causing me to drop things. I've had a lot of gastro issues but am hoping those settle soon. I really hope food will start tasting nice again at some point!

Xxx

God I’m so fed up I could scream!!! I’m at the unit usually it’s to dress the picc line but he agreed on Wednesday that it could come out but it will have to go back in when I next need treatment. They are refusing to take it out ☹️said they can’t see anywhere where that’s written, I’m gutted.

@EachandEveryone surely they can't refuse, it's your body not theirs! How are you feeling now?

@EachandEveryone

Buggeration

Have they left it in, or did you get your way?

Hi
Does anyone take letrozole and ribociclib for SBC? I'm approaching cycle 3 and feel absolutely SHITE! I have joined a FB group, but my level of negativity right now, means my posts keep getting deleted ( sorry I'm
not full of happy positive vibes!)!

Joint pain
Nausea
Fatigue
General feeling of "meh"

Trying to deal with each s/separately, and on my " week off" ribo.

Anyone ? Feeling really miserable.

Thanks.

Oh and a pleural effusion. When does that need draining? Am
told when I can't hold a sentence or climb the stairs, without stopping. I can do those things, but feel crap.