Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

Will post here next! Apologies!

Thanks @LemonDrizzle10

Thanks for the new thread @LemonDrizzle10

Thanks for the new thread!

Thanks!!

No need to apologise!
Just want to keep the thread going.

Gosh it’s amazing how many of us are affected by this bloody cancer business. I’m sick of it. I’ve just had my 11th FOLFOX and I always feel so bad the first week after.

has anyone noticed their legs getting skinnier? I really don’t like it and find it so upsetting like it’s a sign I really am poorly.

are we doing introductions? I’m 57 cancer of the unknown primary which is secondary because the primary has never been detected. Ever. I still can’t get my head around it. It’s usually a terrible outcome but they say mine is the better kind which is SCC p16 which indicates from hpv and should respond to chemo. It did but then it didn’t. So it’s contained in three lymph nodes. I don’t know what the future holds for me. They say immunotherapy on compassionate grounds next. I’m still pretending it’s not happening. I have cats and good friends live in London.

on the upside I’m having an eyelift on the nhs after Xmas and I’m enjoying the free Refkexology I’m getting from the local cancer centre. The neuropathy is something else.

@EachandEveryone welcome! I’m sorry to hear about your unusual situation. Do vent away here. Sending hugs for your treatment and hope they find a solution for you. Have you tried contacting Macmillan for counselling?

To those having filigristim injections, the anticipation is harder than the actual thing - they are small spring loaded injections that take less than a second - it’s not nice but doable. I was told to take Claritin and paracetamol beforehand and take them out of the fridge ten mins before use. You might get a little bruise in your tummy where they go in but it’s not painful. I hate injections and had to put my big girl pants on.

Had my pre-op yesterday - because I’m on antibiotics for a chest infection the nurse said they might delay my mastectomy surgery - the hospital has a policy of waiting 4 weeks past antibiotics for chest infections - something to do with lungs collapsing! I’m knackered and still ill from 5 months of chemo so waiting two more weeks puts the surgery it at the beginning of Jan instead of mid Dec. Have decided I’m fine with that, means I can recover a bit and enjoy Xmas - if that happens.

Now just need to heal.

It does seem to be bloomin everywhere. So many friends I bump into on my daily walk are affected by it.

My intro: I was diagnosed after a mammogram in May. Recall June, first lumpectomy July. Then dad died. Second lumpectomy August. Then dad’s funeral. Mastectomy September and started chemo October. Due to finish around March next year (12 x paclitaxel then 4x EC with osteoporosis drugs thrown in, then 5 years hormone suppressants). Quite the swerve from the plans I had but so grateful for the screening service.

I have hormone driven breast cancer, oestrogen positive, hr- Hugely grateful it hasn’t gone to the nodes. DCIs with a 4.5cm tumour. Originally they didn’t spot the DCIs on the ultrasound and the tumour was estimated at 1.9mm. The original plan of lumpectomy/ radiotherapy took a detour. I’m off work until I’ve recovered from chemo at some point around Easter next year. I’m self employed so not earning 🙄

I’m at peace with what I need to do to get through this and hope so much that nothing else pops up. It’s amazing what you can get used to when you have to although the rage is real at times.

My intro - found a lump at the beginning of August, and diagnosed with triple positive DCIS grade 3 at the end of August. Am halfway through my chemo 😁(18 cycles in all) surgery (don't know what type) probably in February. Then maybe radiotherapy. BRCA tests all negative (was a bit worried about this as my Dad had successfully treated prostate cancer, and my Mum had pancreatic cancer).

I'm 60, and live alone (apart from my lovely nurse Cat 😺). Completely fit and well until the cancer circus rolled into town. Two adult DC, in late 20s and early 30s, one with a disability who lives in supported living, the other has very rocky mental health.

It's amazing what you can get through if you dig deep - wasn't sure I was going to be quite so ... resilient , I suppose.

Fourth pax and second Phesgo today. Let the mouth fun and games commence 😬 I spoke to my lovely chemo nurse today about cold mits etc for preventing peripheral neuropathy, and she said they provide compression gloves as they've found them to be effective. But I'd have to provide my own compression socks. My head hair is still shedding, but I had to shave my underarms today 🙂

Hi chums, bit of a reach out here. Feel like I'm being really weak, but since my first immuno and double chemo I've basically had every symptom under the sun. Not slept due to steroids, constipation, upset tummy, headaches, sickness, extreme heartburn and irritation of hernia etc etc. All of this and severe lack of sleep has made me feel I'm not going to be well enough for my next one and I simply can't do this. I have spoken to the chemo line who have offered some generic advice but am I being crazy? Am I just really weak? Guess I'm just looking for someone to tell me it gets better or this is normal.

You poor soul, @Mintymood youre really going through it. How often are your infusions? Hopefully someone on similar drugs to you will be along to share. I had my dose reduced and they may consider doing this for you. My nurse said this week that it wouldn’t affect how well it worked and that most people have a reduced dose as what they start you on clobbers a lot of people too hard. She explained they want to get us through treatment in once piece.

fwiw my first cycle really hit me as my body went “what on earth is going on!” Currently, my worse days seem to peak on day 4 then improve. All I can say is keep in touch with the team. My whole life revolves around drinking water / squash as if I’m in the desert, even if I don’t feel thirsty, and that seems to help along with exercise, rest and taking the meds they’ve given me for side effects.

Thanks so much for your reply @dancingwhilstfacingthemusic.

Am on weekly infusions so I have the pembro/pax/carbo wk 1, then next 2 weeks just pax then back to the triple. Do this for 12 weeks then move on to 3 weekly EC. Do they only talk about dose reductions etc at a follow up with the consultant? I don't have one til the 16th which feels like an age away!

I'm kind of relieved to hear I'm not the only one who was hit hard by the first dose, although hate the thought of anyone going through this tbh! How are you finding sleep? It seems to have eluded me altogether which I guess doesn't help anything!

Oh @Mintymood i really feel for you that sounds awful. Speak to your team and see if they can reduce dosage.

my intro:

I got my diagnosis in august this year. Oestrogen positive breast cancer. It has spread to nearby lymph nodes but only a teeny amount.

I’ve done 4 lots of EC (with cold cap and have kept about 40% of my hair) and have done 4/12 paclitaxil. Mastectomy booked for end of feb.

im 40, have two dc (5 and 7) and a very busy life it seems.

My dose reduction is due to a grumpy liver. The consultant reviews my bloods and side effects weekly (not face to face, she goes through the numbers). I don’t have any discussion on that but the edict is sent through re dose. I’ve not had my osteoporosis drug yet as I’m avoiding painkillers (grumpy liver) and it’s been on hold until I see a liver specialist. An urgent referral was made 4 weeks ago. Nothing yet. I’ve had a phone review with a member of my consultant team but it was hopeless and I had to get him to check he had the right notes after 5 mins of nonsense (he told me I had finished my first drug - er no, I had 7 left to go, then got the day all over the place for treatments. I also talked about the predict results being based on older treatments which he said wasn’t the case but in the letter I got, it said exactly that, that the predict results were based on historical treatments and therefore less reliable). I hope I get someone else for my next review. My consultant herself is terrific (& did her training with a close friend of mine).

ah yes sleep …. I find if I walk sufficiently during the day, wind down, have a shallow bath then I often sleep better. I know during the cycle the nights I’m likely to be wired. I’ve learned to say to myself “if you can’t sleep then rest”. A friend bought me a sleep headband with earbuds in so I can listen to music or a podcast without waking the household. As I’m signed off work, I can put this on if I try to sleep during the day too. I’m automatically awake at 3.30am and when I ask Alexa the time and get this tend to sigh “ah, good morning 3.30am” rather than “ F O 3am “ as I did at the start! I think if it’s a longer term problem people can be given some meds to help. I’m wondering how it will be when I’m on EC (4x) and getting 3 days of steroids at a time 😬

Thanks @ememem84

So sorry to hear about your liver issues and that review sounds like it really didn't inspire much confidence.

Yes that all sounds like good advice re sleep. I was sent away with 3 x 3 days of steroids for this first one and was just jitters!

Big hugs Minty Chemo is really hard but would say the first one is the worst. Definitely speak again with the team and there are things they can do. For me things that helped were keeping a diary of symptoms each day, that followed a pattern each time so I knew in future cycles what to expect. Drink lots, at least 2 litres a day and I found eating little and often easier than meals, at times I preferred food high in iron. Re side effects many of mine came from the additional meds rather than the chemo and reducing the ondasetron helped, from 6 a week to 1 or 2 a week stopped heartburn and constipation. Later on they let me reduce steroids which helped mental health effects. As you go on you find the best dose and meds combination for you. Also psychologically as you go on as there's less left to do it helps. It's quite common to not get through the whole lot but if you can do over a certain amount, oncologist best to advise, that's still much better than doing none. My oncologist told me with Pax success rate is roughly proportional each week though said would need to be through the first 3 or so before benefit started if stopped early and last couple she reckoned didn't add much. So I took my survival rate benefit from chemo from Predict Breast which was 6 percent over 10 years divided it by 12 and told myself each one gives me 0.5% more chance of being alive in 10 years. Also chemo buddies, find someone going through chemo at same time who is similar to you in outlook, like worriers are best with similar not the be positive people and keep in touch. It's having that connection that helps, I had two and was really helpful, it was only how are you feeling type messages and generally reply was awful and general chit chat but it's good to connect with someone who can sympathise, moan with you and get through it together. Dose reduction mine would not do until end but can ask oncologist.

If we’re redoing intros…

I’m 44, two primary school aged DCs, and an amazing DP who is awesome. I’m so lucky. Generally fit and healthy, work full time at a council. History of migraines. Likes swimming, chocolate and playing the violin badly.

Found a lump on left breast in shower at end May 24. Refered to breast screening clinic. It’s a one stop shop type place where they do everything, all the scans, radiotherapy, counselling, minor surgery. I didn’t know this at the time and wondered why they had a cafe - little did I know that it’s because you spend a lot of time there - Doctor told be straight up after the first mammogram that they were looking at cancer - and the bottom fell out of my world.

Tumour was 71mm, god knows how I missed that - and in one lymph node - I was having constant migraines at the time and my focus was on that and the kids and work - typical woman, not actually concentrating on herself (that’s what my DM said anyway) - CT scan showed it hadn’t spread, including brain - and oddly I haven’t had a migraine since……

Its HER2+ and because of the size I was recommended neo adjunctive chemo - most BC patients have surgery then chemo, but not if your tumour is massive and you have HER2+ cancer. The odds are better that way round apparently. I got the impression that they wanted to get Phesgo in me ASAP as it’s that which stops it in its tracks. My oncologist called it the “antidote”.

Started 6 rounds of TCHP (docetaxel/carbo & Phesgo) chemo in July 2024 - finished two weeks ago. I have kept 50% of my hair, but also have had 3 x UTIs, 2 x chest infections and now waiting a mastectomy and removal of lymph node. Rounds 5 & 6 were awful. I think I have depression and have been referred for counselling. Feeling much brighter since last lot of antibiotics. I have a local Macmillan centre who are amazing.

I’ve been signed off work for another 12 weeks - I get 6 months full pay and 6 half pay. Eternally grateful for local government long service (nearly 20 years) and sensible manager who has been great. DP has equally been amazing and in my rough weeks has done 100% of everything and worked full time. All the school runs, childcare, food shop, cleaning, taxi runs to kids to parties, football, homework supervision etc. I think the DCs have lived on pizza and pasta pesto for 5 months but I’ll forgive him that!

My last MRI showed no sign of the cancer - the tumour has gone and no sign in lymph node either. As best as I could hope for at this stage. Let’s see what the pathology post operation says before we have a party. I’ll also need radiotherapy then 5 years of tamoxifen.

Eternally grateful also for amazing NHS and friends and family who have been so kind.

@Mintymood you’re not weak, chemo (especially carboplatin) is brutal. If you recover ok after the first one you can do it, time and patience and help from friends and family. It’s shit but hopefully worth it. I was alway jealous when sat next to someone on the chemo who had no/few side effects and there was me literally unable to move, think, eat, sleep and in constant pain with carboplatin. You’re not alone. Don’t struggle in silence - if you have a breast care nurse maybe they can help? This too will pass.

@Mintymood have you been prescribed anything for your side effects? I left the hospital after my first chemo with a bag full of meds - anti-sickness, laxatives, antibiotics (with a big label telling me not to take them unless the cancer team said I should). I had terrible heartburn, Gaviscon didn't help, and I struggled with even drinking water. They prescribed omeprazole which is wondrous! No more heartburn. Ring them again and ask for anti-emetics and whatever you need. Big hugs to you

@Mintymood also when the carbo is going in, keep your arm warm - I got freeze burns from carbo and I can’t use those veins again (unless you have a port/PICC line) Hot water bottle/hand warmers etc are good to keep next to your skin.

Hello all, joining on our new thread.

Reintroducing myself - I'm 41, single mum of two (DDs aged 7 and 11), diagnosed in June with triple positive pleomorphic lobular breast cancer, stage 1, grade 3. I had surgery first and then 12 weeks of chemo and am having a year of trastuzumab.

I'm still a bit knackered but coming out from the chemo fatigue - which was probably as much psychologically as physical!

Wishing you all well today on this cold and busy Saturday... we went down to Oxford Street to do some Christmas shopping and OMG I will never go shopping on a Black Friday weekend again! 😅

@Littlecaf I work for a council too! I don't have long service yet but thank goodness for sick pay and my amazing manager who has let me work from home the whole time I've been having chemo! I was lucky and it did not hit me too hard so I could manage it. I only had the 12 weeks of Paclitaxel which I think is easier. Still, I was thankful to be able to take the occasional bad day off work and sleep when I felt too tired to work.

I think you are wise to take time off for the mastectomy and recovery. I took six weeks off and it was definitely very helpful not to have the pressure of returning to work too soon. But I had a single mastectomy and went flat on that side - I understand that's quicker to recover from than reconstruction.

Thank you so much everyone. It has really got on top of me with the insomnia and sickness. I was given high dose steroids and only anti sickness to take home which didn't seem to help, so more thought into meds for sickness, heartburn and something for sleep may be in order. Really appreciate the hand hold and help from those further down the line on chemo. Feels impossible at the moment but others strength seems to be what drives me.

As my short re intro I am 33 and was recently diagnosed with stage 2 TNBC although awaiting further biopsy. BRCA1 and cancer on both sides of family. Going through the Keytruda intense chemo regime and then double mastectomy. Leaning on other wonderful and strong people in this thread to get me through!

@Mintymood my first EC chemo hit me like a freight train. I was struggling to get from the sofa to the kitchen tap for water.
I too got a reduced dose for the next ones.
It seems your body starts to cope with it after a while. I really struggled with anxiety but that thankfully reduced when I started ticking off the treatments. Diazepam was close at hand when I needed it though!
Steroids are a bloody nightmare, hand holds galore here for you.