Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Morning all
Been feeling very tired and achy so have been mostly laying around for the last few days. After finishing chemo I have now received an appointment letter for my next session - hopefully it's an admin error.
I am seeing onc tomorrow to find out what the next part of the plan is although I have come to realise that the plan can, and does, change at any time. Does anyone else have a lot of changes to the plan or is it just me?
Hope everyone is coping with treatment and the cold weather

Cookie fingers crossed you get a start date soon :) all the waiting around is hard work! Well done with the chopping.

chewing hopefully an admin error indeed! I hope your onc has a good plan for you :) I'm not sure I really have a plan, just bumbling along waiting for something to change I guess

Meant to say I hope the tiredness and achiness wears off soon. Hide under a blanket somewhere cosy :)

Thanks Leslie. I'm feeling a bit better after some hot food and a mince pie

Best of luck Flippy with tomorrow's scan.
I am thinking of Tutti ..hope all is well with you?
Waving to everybody else.

Evening everyone, hope you're all wrapped up nice and warm cos its freezing down here in the south west! Even with my hot flashes I'm still feeling decidedly chilly!
Flippy I didn't start having Tamoxifen until after rads. My surgeon said that as I was her2+ then I needed chemo, then surgery, then rads, then tamoxifen but I'm not sure if that was just her preference or whether that's how all her2+ patients are treated. I'm currently just having herceptin, after all the issues with Tamoxifen and won't start on Exemestane until after Christmas. My onc said he thought it would be better to get Christmas out of the way before I tried them!! Not sure if he has visions of hormonal turkey throwing competitions on Christmas Day but anyway I get till the new year and he doesn't think it will make any difference.
Cookie sadly its not my amazing hair that you saw as I didn't cold cap and this time last year I had no hair at all!! But the upside is that it's all grown back and although it's not quite the length it was it's getting there. Its about 5 inches long all over now and is no longer grey and white

Thank you for all of the positive wishes. Good news - BCN called me to say that CT scan is clear - it feels like an early Christmas present (sorry Cookie, you're right, it's not Christmas until December ) Back to the hospital tomorrow for more chat.

They have a provisional surgery date for me just before Christmas, which is going to be a nightmare for childcare. Although I have a good support network, and this would be fine if it was a different time, so many people I'm relying on are away for the holidays, and I just don't know if that date is doable. Wracking my brains trying to come up with a solution, and not finding one.

Thanks Rover, yes, that seems to the standard schedule for the treatment, it appears that giving chemo first sometimes has benefits, but it also provides more time to discuss surgery options and find a date.

chewing there are few things that aren't at least slightly improved by food

rover it's chilly here too. I hope you're cosy. I'm sure the man on the news said it could go down to -8 or something though I may have been half asleep. Your turkey throwing reminded me of an article I read in Psychologies once where the writer was trying to justify hitting someone with a chicken in the supermarket good you'll have a break over Christmas though after all the nastiness with the tamoxifen!

Flippy that is excellent news what a relief! I hope you can work something out with the childcare for the op

Rover - sorry it was Rocket that cold capped and has a fab head of hair. Doesn't bode well for my future chemo brain if I can't get it right before it's even started doh!

How long did it take your hair to grow back after the chemo?

Flippy - great news re your scan and I have no problems with early Xmas presents like that. Would it be possible to reschedule your op to early January when people are back after Xmas? Not sure if that is an option.

In terms of treatment, my diagnosis is very similar to Rovers and I have been told chemo, surgery, rads and Tamoxifen. I think they are hoping that, as I've got 2 tumours and smallish boobs, the chemo will shrink them enough not to require a mastectomy.

ECG today, pre-chemo tomorrow and then hopefully a date to get started.

Good luck with the ECG Cookie :)

Lots of people have gone quiet so I hope that's because you're all getting on with lovely non-cancery things

Afternoon all Hope all appointments/treatments are going well.
I saw the onc earlier and was asked "What's going to be happening next?" . Er, isn't that their job?
Anyway, after various discussions I am going to be having an urgent PET scan to see what's going on as I am a bit of an enigma. I also requested a second opinion from a specialist hospital and was told that that was a good idea. Wish I'd done it months ago now.
Because of a discussion I had in the chemo suite last week I was pleased to see that the rare cancer nurse was in attendance and we had a good chat afterwards. It's nice to have a contact as I've been left a bit on my own really. Hopefully things will move forward a bit now.

Cookie My hair started to grow back slowly when I finished fec, (apparently docetaxol doesn't affect your hair as much). It was slow so don't expect miracles but I had a short crew cut by the time I had surgery which was mid April and my last round of chemo was beginning of March! Its now about 5 inches long all over and thick as well so its grown back more or less as it was before although I have a very slight wave at the end but I'm not sure if it will stay wavy once its been trimmed. The hair on my legs grew far faster and was one thing I hadn't missed with chemo!

Good luck for ECG and pre-chemo Cookie. Chewing, that is concerning all round, hope you're ok, it all sounds very frustrating and hard. I cannot fault my treatment so far, the BCNs especially have been brilliant, so I'm sorry that you're not getting the same kind of support. Hopefully your hairy legs will keep you cosy rover .

My op has been rescheduled for January - phew. Consultant said not to worry, the delay won't make any difference. I hope he's right. I may be offered a cancellation beforehand, but to be honest, I am ok with it, especially as I get to have Christmas with DS and then we're able to go and see my family for New Year.

Back to see the plastic surgeon tomorrow to tell him my decision for recon and discuss preparations I guess.

You were all right - now that I have the first part of the plan in place, I am feeling a lot better. Hope everyone is doing well today and staying cosy.

finally had my -according to the gp- 'complicated' scan results today.....

unremarkable lungs and bones

huge relief after waiting nearly 3 weeks for them!!

nice consultation with the surgeon who is going to hoik my kidney out, took his time and showed me all the scans and i came away with a leaflet

#easily pleased

offered the operation for christmas week - he wasnt surprised when i said no thank you, so January it is now.

i was then sent off for pre op assessment/bloods so just need to show up on the day now!

Hello all, I'm still around but reading every few days now rather than several times a day and I must admit I'm getting a bit confused with where everyone is up to. There seems to be a bit of positive news about and I'm so pleased about that. I'm about 2 1/2 years on from diagnosis and treatment and really trying to get on with life again. I'm half way through my 5 years of observation and probably ready for a change of drug in the new year. Sometimes I don't think about cancer for hours, but I'm too superstitious to say more than that. I just wanted to say there is light at the end of the tunnel, not for everyone I know, but for many. I'm enjoying a few months with no appts, it will start up again soon enough.

We're expecting dd2 home from university in another week for Christmas and DH is on his last trip away for the year. I've spent the afternoon wrapping presents, which I hate. Things will never be quite the same again but it does get easier.

Evening all, I've just been catching up, wishing you all well who are embarking on treatment, and as Mrs says, there seems to be some relief from scan results.
chewing how frustrating! I think a second opinion is an excellent plan, and of course you have the chemo under your belt now. Good luck with the scan.
leslie I hope you are feeling a bit better post chemo, hiding under the duvet sounds an excellent plan.
It was -3.5 degrees this morning according to the car, DD categorically refused to wear her coat - and then whined all the way to the childminders so life is very much returning to something more familiar, even if "normal" seems unlikely at the moment.
I am suffering a little with cording, bearing in mind I am nearly 9 months since surgery this is a bit of a surprise . I've had to restart all the post surgery exercises but it's getting worse rather than better. The leaflet on the exercises does say that arm stiffness/weakness can occur long after surgery.
I'm wondering if my handbag has been too heavy . I haven't been able to carry my bag on my shoulder since the op, so have a tote I hold in my hand. And you know how nature abhors a vacuum...
My hot flushes are thankfully milder on the venlafaxine and I'm certainly coping better with the lack of sleep. I finished my counselling sessions last week as well so really feel like I'm making progress
Just a dose of bisphosphonates to get through before Christmas!
Waves to all .

Sorry girls I'm back. Quick question does anybody know anything about taking tamoxifen or anastrazole to help minimise bc risk. Have been told that due to a number of factors I am high risk of developing full blown breast cancer and to consider taking something to lower my risk.

Congratulations on your unremarkability Baubles - but how rubbish that you had to wait three weeks to find out. Dora do you have a breast care nurse (BCN) that you can ask? Or you could call the breast cancer care helpline for information.

I saw the plastic surgeon again yesterday, which was ok, although I'm a bit concerned that he's said I'd be about a C/D cup afterwards - as a current FF, I'm hoping it's closer to a D, as I think I'd feel a bit out of proportion otherwise, and he also said that rads could shrink the recon further. Worst bit was having photos taken, just because the person doing it was really rude/brusque - it was awful. I didn't even feel like a person! I'm going to mention it to them and refuse post op photos if it's the same woman doing it.

I have a list of things to take into hospital, but please give me any tips involved with mastectomy, lymph node clearance and immediate recon!

Pepper hope your exercises are going ok. Wave to everyone else.

Hey FlippyNeck

Sorry to hear you had a bad experience with the medical photographer. I had a double mx and immediate reconstruction back in August and also hated this part - not because of the photographer (they were actually very nice) but because they showed me the photos after which were AWFUL! Having only ever really looked at my breasts in the mirror face on and thinking they looked okay, I had no idea that from the side they looked like a pair of spaniels ears

Anyway, the things I found most useful in hospital are as follows:

Available child's non leak sippy cup for drinking post op when you may not be able to sit up straight away

A V shaped pillow to tuck behind your back for comfort

Baby wipes for keeping fresh (although I had no dressings, the wounds were glued and I was able to shower straight away if I wanted. I didn't!

Dry shampoo - hair washing will be tricky for a while

Drain Dolly bags for carrying drains. I had 2 drains from each breast for 2 weeks and lugging them around was probably the worst part!

Button fastening night gowns and shirts as pulling things over your head is tricky (read impossible) for a while

Don't bother with expensive front fasting bras - I was given one from the hospital and pretty much wore that for a few weeks. After that I switched to soft non wired supportive ones from Peacocks.

Will add more as I think of more stuff

*A child's sippy cup, not 'available'!

Hello - I'm just resurfacing from round 3.
It's been a totally rubbish few days - not exactly highs and lows of utter shitness - but I struggle with feeling totally useless and it freaks me out that I can stare at a lampshade or other inanimate object for 3 hours with no energy to move.
At least I feel my brain is returning - I'd like the constant ball of sick feeling in my throat to go away though.
I haven't been able to post until now - as even reading the drug names, the word 'chemo' etc makes me want to be sick.
Woe is me!!

I move onto Doxataxel (sp?) and herceptin and pertuzamab for the next 3-4 rounds.
I've been told to expect body aches but any other side effects? I'm a bit gutted I will lose 2 good days too this time as have to take them all on separate days.

Hoping to stop feeling sorry for myself tomorrow...

Rocket I found Docetaxol, herceptin and pertuzamab much easier than fec (which what I assume you're having at the moment). I didn't get the 'spacy' brain feeling and although I ached some painkillers sorted it out enough that I could still get stuff done. Don't recall any other bad se and certainly no sickness. The side effects for me didn't kick in immediately either it usually took till day 4 or 5 but it was similar to fec in that it was one week of being knackered and achey, next week of feeling a bit better then week 3 was reasonably normal and I was trying to get things done for the next round of chemo!! Once the chemo was over I was able to have Herceptin by injection which is much better and alot less time and although it makes my joints hurt its completely manageable with paracetemol and very occasionaly cocodomal at night but that is very rare. Also my hair started to grow back .

rocket74 I think we are at very similar stages with our chemo, I am 10 days post 3rd EC chemo cycle and can totally relate to your SE's. The sicky feeling has just subsided and my brain is mostly back, but I am now suffering with the most awful indigestion and heartburn. Last night I actually thought I was going to pass out with the pain of stomach cramps which was then followed with not very pleasant toilet action + vomiting. I literally had no control over my body.

Did anyone else experience this? Did any medication help?

Joandthetribe yes I'm now 8 days post FEC. I haven't had the extreme issues you have had on the loo some unpleasantness but not as painful it seems.
Are you changing to docataxel on the next round?

I can't lose this sick feeling in the back of my throat though - it's really getting to me but at least I am now up, showered and feeling overall more human. And I still have my hair.

Thank you for that list Jo. Sorry to hear that both you and rocket are suffering. Leslie hope you are cooried up under your duvet.

I've been checking out the info from the Scottish Medicine Council, and pertuzamab hasn't been approved here yet - only in England and Wales. It's been rejected three times previously, they are due to review it again on 12 December for neoadjuvant treatment. The results from the APHINITY trial are due out any time, showing how it works as adjuvant treatment, but SMC won't review that until the second quarter of 2017. It's all a total headfck to be honest, amber* if you're reading, I take my hat off to you for keeping up with all of the research and being able to explain it so well!

I'm also confused about the lymph node situation - I don't think I got a definitive answer from my surgeon, he talked about clearance or rads - I assumed clearance, but now I'm not so sure. I know I have one positive lymph node from the biopsies, but nothing else showed up on ultrasound. So I don't know if that indicates SNB (I think they can remove up to 4 nodes then?), clearance or rads could be options. I don't think I get to see him again before surgery, so I'll call the BCN for a chat. But after Christmas.