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

Is anyone on anastozrole or am i the only elderly bird x

Evening Lacies, hope you are all well. Waves to Royal and everyone.

Paying for my lovely day yesterday with lymphoedema and fingers like bananas which started last night and has just got worse, nasty and very painful.

Helly that downgrading at work is an absolute disgrace, as is the attitude of your colleagues who think that you've had a lovely break at the Costa del Cancer.

This is the sort of bollocks attitudes that the pink and fluffy cancer advertising generates; it's all about having lovely walks wearing bras and wacky wigs..... and of course that's what cancer is all about isn't it ????

MrsHodge. That's a hell of a choice/decision to make and consider. I always check on breastcancer.org as I find it quite science/research heavy and it's good for making the really tough decisions. Then I invite my emotions to join me round the table and have a crisis/breakdown

Helly, how are you finding the anastrazole? I'll be moving onto it in the next few months, sooner if they insist in the hysterectomy but if not then next year sometime. I've heard it causes a few aches and pains.

Helly, I also meant to say how awful your work situation sounds. I think I'm right in saying that having breast cancer means that you are considered disabled as far as employment law is concerned. Your employer could find themselves in trouble if you were to pursue that line. I presume you don't want to bother but I'm sorry you're facing that as well, very shoddy behaviour.

Hello Tutti ..ouch you poor thing! Have you been given anything for that? I read once there are certain exercises that help..might be worth asking.
Mrs wishing you the best outcome ..it must be tough thinking about this.
Helly my oncologist says he will be moving me off Tamoxifen at some point as I have hit the menopause due to the chemo:( he didn't say when or what exactly we will be moving to but it is most likely an inhibitor. How is it for you?
Leslie how are you doing and have you had that talk with your doctor re your SEs?
Waving to everybody else

Morning Everyone.

Thinking of you all.

Have been doing the exercises since day 1 Royal. Think I'm just having a flare up with the latest surgery and the gardening. Managed a 1k swim last night and it's eased off a bit this morning.

Hope you all have a good day

Morning all. Been laid up with a cold the last few days. Now feeling chesty so at doctors getting it checked out. Will catch up with everything later on. Hope you're all doing OK.

Tutti glad to read you're better. Swimming is always being recommended to me.
chewing sorry to hear about your cold. Hope that cough clears up soon and doesn't interefere in your treatment.
Hope everybody else is doing as well as can be.

Evening all. Got some steroids for my chest to hopefully avoid getting an infection.
Leslie hope you are keeping well
tutti hoping the bananas are not too painful
bob
helly at your work situation. I'm sure some people think that having to have all that time off is a stroll in the park. I often get told how well I am looking followed by how busy everyone is
mrs hope you're sleeping better

Hi Lacies.
Let's hope that the steroids do the trick Chewing. Are you feeling any better ?
Hope everybody is doing OK today.

Have the oncology appointment this afternoon, so have been looking at the latest research.

One of the things I'm going to ask about is bisphosphonates.

There's excellent studies showing that they reduce the chance of aggressive breast cancers spreading to bone.
Even though the drugs cost less than 10p a day, they have not been licensed by NICE. I'm going to ask for a private prescription today and will let you all know how I get on.

Waves to everyone.

Morning lacies. Tutti I am feeling a bit better thanks
Interestingly I was reading about bisphosphonates recently in the breast cancer care magazine and have it on my list of things to ask the oncologist about at my next appointment. It can also be used as treatment for secondary breast cancer in the bone to help strengthen and reduce the damage from cancer. As I have been told my bone could crumble I am wondering why possible preventative measures have not been discussed.
Good luck with the appointment.

Hi Tutti yes this was in the news and all the major papers a while ago. I agree it is worth discussing. Let us know what your oncologist says.
chewing hopefully the meds will work and you will beat the infection.
Have a good day all.

Morning all.
I'm really struggling to come out of this first round of chemo. Had it on Thursday.
I got up yesterday to try and help with kids in the morning but I just whited out and had to crawl back to bed. Finding it hard to stay upright and I feel so weird and like my head is all misshapen got a constant headache which adds to the mild nausea. I know it could be worse and I expected worse really but I'm still finding it hard. I'm dreading the next session already. I can't fathom feeling like this for the next 18 weeks.

Sorry you are feeling so rough rocket. Are you drinking lots of water? I was told that lots of liquids help. You can take paracetamol for the headaches but this lowers your temperature so you need to keep an eye for any potential fever. I have some days where I am utterly drained but lots of others where I feel active and wide awake but there's no way of predicting these unfortunately. Hope you feel brighter soon

mrsrhod I hope you've had been sleeping better with the bed to yourself :) I hope you can avoid the surgery

helly sorry your work are making life harder

chewing fingers crossed for the steroids doing their job

Tutti good luck with your oncologist

rocket you will probably not feel this ill for the whole time. Hopefully you'll have good days in between the bad ones. Definitely mention to your team though as there may be things they can do to alleviate it :)

I'm off to see my oncologist later too. Hopefully we will be able to agree on a plan to address my digestive issues as I only narrowly avoided having to go to hospital this cycle, which seems such a waste of a bed and NHS resources!

I hope everyone has a good day. Love to everyone feeling ill or recovering from surgery etc

oh dear ,blasted SE doing rather a few of you in

it's very hard when in the grip of sickness/pain/exhaustion to imagine it will end - but itwill .Hang on in there everyone .

And Leslie narrowly avoided having to go to hospital this cycle, which seems such a waste of a bed and NHS resources! ah hem ,not to mention being pretty dire from your point of view ...

to all

Hugs to everyone who is suffering at the moment
Re bisphosphonates I had my first IV of zoledronic acid with my last chemo and the oncologist recommends that I have them every 6 months for 2/3 years to help prevent bone mets and to counter the effects of the letrozole (which I haven't even started yet!) so it certainly seems to the norm where I am.
I hope everyone feels brighter tomorrow.
I am off to a spa evening tonight - a first venture out in public in a swimsuit since the WLE surgery.... luckily I'm so short sighted I won't actually see what I look like!

Rocket let us hope the next sessions will not be like this. If I were to give you any advice it would be rest...rest and do not feel guilty about it.

I'm so sorry that so many are suffering. I hope tomorrow brings a better day.

Was in the unit for hours today. Jury's out on my oncologist. Absolute no with regard to the bisphosphonates and went further by saying that none of his colleagues in my area would prescribe privately. Got to see where I go with that one.

He listened to all my digging/research and discussed it with me and what he's proposing is roughly in line with best practice.
So FEC-T for 3 +3 cycles and 18 Herceptin, starting 2nd November. With much joy I found that the 2nd round I'll be getting more steroids and an even bigger arse.
Offered sooner but going away early part of next week (Wales we think at the moment) and then DD has university interview.
Also got to fit in teeth, flu jab, and all the pre chemo tests.

There must be something in the air Lacies as I spent most of the day in bed yesterday, someone pulled my energy plug, and had to have a little nap after the appointment Haven't even started treatment yet, it's ridiculous !!!

Here's to a food night sleep everyone

Leslie, I hope you had a positive visit to the oncologist and you have a better plan for your next cycle. I have enjoyed having the bed to myself, if only because when I get too I can move over to a cool bit. Hot flushes coming thick and fast now, I'm struggling with the heating being on everywhere despite it not being properly cold yet.

Tutti, I'm disappointed to hear about your oncologists reaction to bisphosphonates. What was his reasoning? I do struggle to understand the different approaches around the country. It's a conversation I'll be having but not until the spring if I move onto a post menopausal regime. My oncologist can be a bit arrogant so it could be awkward. However I have to have a bone scan before the anastrazole as its not good for bones so that leads into a conversation I suppose.

Pepper, I hope you enjoyed your spa evening.

Everyone suffering with chemo, I hope the worst wears off quickly.

DH is not enjoying Japan too much, more raw fish than he can handle but it would not do to decline. He was taken for a seven course dinner served by geishas , a great honour but when they served the killer puffer fish I think he was genuinely scared.

Mrs Hodge He referred to necrotic jaws and bone health, both valid concerns, but did say I would be having a bone density scan at some point.
He then said that neither the NHS nor the private hospitals around here would prescribe as it wasn't licensed by NICE to prevent bone mets... only if you have them. .NICE aren't even starting to consider the research until 2017; and haven't licensed any new breast cancer drugs in 7 years.

I came across a couple of articles when looking at it. Neither GP's nor hospitals want it coming out of their budgets and are also unclear as to who will administer it, if given intravenously. (The cheaper option of Oral application increases cases of osoephageal cancer).

Some health authorities can sanction it, but from a general cancer fund and not the main budget, ours doesn't at this time.

Lot to think about.

Forgot to say...raw poisonous fish. Yuk. Hope your DH managed to find a nice burger joint on the way home

No burgers sadly but he did spot a KFC near the hotel, think he might crack tomorrow.

Morning all

Just to add to the bisphosphpnate debate, I am in Cambridgeshire and will be receiving it as an injection every 6 months starting from my last chemo cycle. My oncologist has recommended this as I am pre-menopausal and will also be receiving an injection of Zoladex every month to 'switch off' my ovaries. Apparently this can increase the risk of osteoporosis and so the bisphosphpnate is given to counteract this...and yes, it does have the added benefit of helping to protect against secondary bone cancer so I was more than happy to receive it. However I do need to have a tooth removed on Friday and the dentist has warned me that if the gum hasn't healed sufficiently he will not authorise it due to the whole rotten jaw issue!!

Chemo side-effects have all but disappeared thank goodness - am now back at work and carrying on as normal, until the next one

Hope everyone has a good day

Jo x

I'm seeing my dentist tomorrow, I'm going to ask him about this. His wife has BC too so he has a personal interest. I'll see what he knows.

Glad you're feeling better jo.