CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

mrstraveller Don't worry too much re docetaxel, I have had 3 lots & the side effects have been varied. The 2nd lot was a breeze, but I slept a lot which I think helps keep side effects at bay.

I have been blissfully ignoring any thoughts of recurrence whilst dealing with this. Mainly because the (wonderful) consultant who did my biopsies said I would have chemo 1st to shrink it all as much as possible, so my op would be as minimal as possible and in 10 years time I didn't have as awful a reminder of what I had been through now. I know things change, but her words have really stopped me fretting.
I don't even know what stage mine is at yet. As far as I am aware it is a lump in my breast and one lymph node affected, but until they remove them all, I guess I won't know for sure.

I haven't googled either, I think I am just coming to the end of my chemo & getting nervous about everything & just managed to zone in on something yesterday that I wish I hadn't.

Noodles

Yes I too do not know what Stage I am. I haven’t been told and I haven’t asked. As far as I can remember it wasn’t mentioned in the Consultant’s letter. I too have lump and lymph node involvement.

I have been told I will be having a mastectomy though.

Thanks you have reassured me re the docetaxel. I hate the thought of being sick.

@noodles44 mine sounds similar to yours except at least 5 lymph nodes and some in my neck area too.

Same thing re shrinkage prior to surgery although I believe that may be cause I have massive norks 

I have triple negative results which in my tiny mind means I have the highest chance of reoccurrence and passing it onto the DCs. They're running more tests on my bloods and my scan results will be available when we get home.

Apparently it also increases my chances of ovarian cancer etc so having those removed is a possibility too.

@Simmi1 I know it's all terrifying just now but let's make a deal to focus on getting through the NOW and we'll deal with what's to come when it lands. I believe I'll possibly go mad otherwise

Good morning lacies.

I'm BC too and interestingly enough I was just thinking this morning that I've not actually asked what type I have! I'm 3 chemos in and will also go into Docetaxel next time. I'm worried about the side effects as well but if it's a week of feeling shit each time to have more ok time then I can get my head around that! My nurses do keep telling me that not everyone gets all the side effects and are very positive.
@WhatWouldLeslieKnopeDo I'm about to look up salt therapy it sounds interesting! I'll take anything I can throw at my body, although I've just stuffed my face with a healthy jacket sweet potato with Greek salad, followed by 2 mint clubs! Oops
That notebook is amazing, I'll be googling that!

Yes the nurse told me last time that because I’d tolerated the first 3 rounds ok I should manage the docetaxel ok too.

I've had my flu jab. The nurse practically pounced on me. I don't know if she's used to people trying to run away or something

She gave me the go ahead to try the breath training so my sister has ordered me a Powerbreathe device. She has Amazon Prime so it will arrive tomorrow. I will let you know if it helps purple, and anyone else with breathing issues.

noodles sorry you're having a rough time of it

Mrstraveller a hot water bottle or wheat bag might help your arm. I hope it improves soon.

Hi Ladies, can I join you? I have stage 2 breast cancer ER+ HR2-, diagnosed late August. I had a half mastectomy a few weeks ago. One node affected. I'm now awaiting oncology appointment, to see whether I need chemo or just radiotherapy/node clearance.
I have phone call appointment(!) booked with GP as quite sore from nerve pain.

Welcome SueDunone sorry that you need to be here! Good luck with your GP appointment. I hope they can get your pain sorted. And good luck with the oncologist too.

Sending positive thoughts, resispa .

Totally agree keepcalm - we just have to focus on getting through. I’m having chemo first as well - I think it’s standard practice for hormone negative type cancers as they tend to respond well to chemo. My nurse was telling me she’s seen massive tumours shrink to virtually nothing with chemo so surgery needed is then less. I think I’m still going to need a full mastectomy though as I have DCIS (pre cancerous cells) as well and they won’t go with chemo apparently.

Welcome SueDunone - sorry you need to be here.

Good luck with salt therapy Leslie

I now fancy a mint club ranout and they don’t even sell them here in Aus .

keep calm and simm

I agree that not looking too far ahead is the best way. I try to just let my thinking go to my next appointment and no further. Doesn’t always work but I’m doing my best.

Good attitude mrstraveller - my next appointment is on Thursday- I have blood tests and I need another biopsy as apparently with the first there wasn’t enough tissue to be absolutely sure it’s HER2+ so I need another to make sure I get the funding for herceptin treatment which is annoying (and painful 😖). I then see oncologist on Friday in advance of chemo round 2 next Friday.

First day home alone today after the last month of whirlwind diagnosis, tests, treatment etc. I feel strangely peaceful. Hope you all wake up to a wonderful Tuesday morning

@Mrstraveller it's all about living in the moment, or at least trying to 

@Simmi1 I have my first chemo & scan results on Thursday so I'll try send positive thoughts to you too. Although I'll be back on UK time by then so they might come through at strange times

Have a safe trip back KeepCalm and good luck for Thursday . Chemo was not as bad as I expected - a rough few days but I’m pretty much fine now

keep calm and simm

I’m at the hospital having herceptin today and then chemo on Wednesday. I’ll be thinking of you both on Thursday if I don’t get chance to post in the meantime. I’m at the hospital for 6 hours today so might see if they have wi fi this time!

Mrstraveller good luck with today's treatment :)

KeepCalm and Simmi it's a good idea to try not to think too far ahead. Especially as occasionally treatment plans will change. Even with chemo try not to get too attached to the dates as sometimes it is delayed due to blood test results or infections. It's very much a case of going with the flow :)

Happy Tuesday everyone

Good luck with the herceptin today mrstraveller and the docetaxel 2mo. After feeling pretty grim on Sunday, I perked up a fair bit yesterday and pretty much feel ok today. Hopefully if you get any side effects they will be minimal or at the very least not go on too long.
My worst days are days 4 & 5 - am on day 6 now, it all follows a pattern & my mouth feels furry today like I need to brush my teeth (which is how I was the last 2 cycles) so there is some comfort in knowing it is going the same way as before. I find pink grapefruit & pink grapefruit squash with fizzy water make my mouth feel much nicer/fresher at this point too...

I have started reading my breast cancer book today (properly as opposed to skimming it when feeling grim) and it really has very good info. I just was not in the right frame of mind to pick it up before & thought I'd say as don't want to put anyone off from getting it just because I had a wobble on a grotty chemo day and zoned in on a few of the scarier aspects.

Are you back from holiday now keepcalm? Good luck for your chemo & scan results on Thursday.

Hi Suedonome sorry that you are joining us. I hope your nerve pain is not too bad and you are not waiting too long to find out your treatment plan going forwards.

I hope you are having a fantastic time away with your uni friend TQ sounds like just what the doctor ordered.

I hope the powerbreathe gadget works lesley that could be very beneficial if it helped you with going up and down stairs.
I do dog walks & so far, haven't been too affected by steep hills etc, the days I plod & admire the view are my worst ones after chemo mainly...

Waves & hello to everyone

I'm back from my fabulous overnight spa stay- it was JUST the tonic!

Managed to somehow accidentally recreate the Turin Shroud when taking my make-up off though; let's hope it's not a harbinger of doom

Loving the shroud BitofFun

Well I have an appointment through, the hospital telephone this morning and offered Friday or Sunday, so I've gone for the Sunday rather then take time off work. So just 5 sleeps and then hopefully I'll know a little more about whats going on.

Hey all.

I had my mri yesterday and didn't freak out. I got through it by singing greatest showman songs.

Simmi, don't worry about having to give up work. I've had to stop work completely and tbh I wouldn't have been able do my job with how I feel.

Purple I get really dizzy when I exert myself and then my lower legs shake and I know I've done too much. I had plans of swimming once a week but yeah that hasn't happened.
Noodles the only thing that helps me is ice cold water with Apple squash. I can't drink anything else or I feel really queasy which is a shame as used to drink gallons of blackcurrant.

I start the new chemo next week so fingers crossed I tolerate it as well as or better than this lot.

Oh well done Pandora ! That must be a huge relief.

Went into a fairtrade shop in York today, with loads of salt lamps and thought of you Leslie!

noodles

I like pink grapefruit tonic water once I am past the worst of chemo side effects when I can only really face water. I can't remember who makes it. Don't think it's Fever Tree. Unfortunately they don't seem to sell it at my local Tesco or Sainsbury's. You can get it at Waitrose but there isn't one near me. I occasionally have an Ocado delivery and you can also get it from there. I am going to send my husband on a mission tomorrow to see if he can find Pink Grapefruit squash and then I can just mix with sparkling water as you do.

Re the pink grapefruit juice, I received this message just yesterday from a friend of mine- worth checking out?

*Boring medical post! Ignore me until you are home from the spa xx

This might be a bit random, but I was reading an article about random things that contain this chemical CYP3A... and it can stop the body absorbing treatment drugs properly. Things that have this chemical include:

Food/Drink:
-grapefruit and its juice
-seville oranges

• pomegranate

-star fruit

Other Meds:

• certain antibiotics
• some chemotherapy drugs
• anti fungal drugs
• drugs to stop fits (anti convulsants)
• drugs called calcium channel blockers

-anti depressants -statins

• steroids

Herbal:

• St John’s Wort
• Black cohosh
• Ginseng
• Ginko biloba
• Goldenseal

I don’t know if any of these apply to you, but worth avoiding them until you’ve checked with your onc maybe xx*

Gah this has reminded me that I am not supposed to eat grapefruit with the anti-depressant I am on so thanks for the prompt/reminder. The anti-depressant stuff has kind of faded into the background with everything else. I haven't drunk that much of the tonic water as it's quite hard to locate anyway - I would just have the occasional small can in the evening when I started to feel better. But probably best avoided for now. I don't take any supplements as I thought it would just make me anxious about things that might clash with the chemo. Thanks!