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!

NameChange - Goodness, I do think you’re amazing still going to work! It’s good that you’re not experiencing hair loss this time around. How are you finding having a picc line?

I really struggled for the first week after the IV Oxyplatin. My hands had painful pins and needles and kept cramping. I found having a heat pad helpful and clutching warm cups of tea. Drinking anything colder than lukewarm gave me shocks up my throat into my ears and my throat felt like it closed up making speaking uncomfortable. Couldn’t touch anything cold as it felt like electric shocks in my hands. The remote control, my books and iPad all hurt to touch. I kept wrapping things in the heat pad or blasting them with a hairdryer before touching them.

Felt very lethargic and kept getting very hot flushes from my shoulders upwards.
The nausea has been a bugger too. Even now brushing my teeth makes me gag and the day before yesterday I had a cup of tea in bed then went for a wash and brushing my teeth brought the tea back up.
Also struggling with what to eat. Can only eat a little at a time and what I eat one day I don’t want again. I’m trying to keep my weight at 9st but I keep dropping 3 or 4lbs when I have a day when I’m not hungry. My eyes look very sunken and my cheeks a bit hollow.
I’ve been wondering if it’s ok to have cosmetic fillers while having chemo.

TQ I read that as single parent of 59 DDs. I must get more sleep tonight I hope you've got plenty of company and distractions to keep you busy while waiting for treatment to start

Aimless that's one hell of an operation you've had! How long did recovery take? I hope you had everyone running around after you when you got home.
I'm not sure how much truth there is in it but I've heard the more aggressive the cancer the better chemo works

Hey guys just a quick check in as I'm falling asleep again.

I'm 32 and I've got stage 3 invasive ductal breast cancer with inflammatory presentation er/pr negative hr positive. It's in my lymph nodes as well but they don't know how many yet.

I'm having 3/6 rounds of adjuvant chemo, mastectomy and node clearance at Christmas, then more chemo and radiation.

Then got to lose 10 stone in order to have my reconstruction.

Goods news-the genetics people believe it's not genetic related so hopefully my girls will be spared going through this.

I'm bald with peeling skin on my hands.

Ive got 3 kids, 2 guinea pigs and a ferret.

59 DDs! That was funny Purple
“There was an old woman that lived in a shoe....”

I was in hospital for a little under three weeks after op then spent a few weeks doing very little at home. I think I recovered very quickly as before the surgery the oncology surgeon said it would be a year before I felt as well as I did pre-surgery again but I have had days when I’ve felt quite well, albeit a bit tired. But my fitness levels have dropped so that’s to be expected.

It might be useful to others facings ops to know that I was advised my my surgeon to strengthen my heart and lungs before the op by doing as much walking as I could manage and was advised to gain weight and got myself up to about 11st.

Oh goodness Aimlessy nothing amazing here! Work keeps me sane so it’s entirely selfish.

Now it’s stopped leaking all over me I love my picc line. Before I had it I was getting all the pain you describe, and my veins are still horribly damaged. So it’s been brilliant so far. They may move me over to a port though if I have a lot more chemo to go (which I most likely do) so I’ll get to compare the two!

I have a lot of stones on you (have put on so much weight through all this) but I still try really hard not to drop more than a few pounds as am determined to show that I’m tolerating treatment and it can carry on. It’s hard though as I feel like an elephant!

I have been looking at lots of cosmetic treatments! I know it seems frivolous but I really need to feel like I look ok!

I was advised my my surgeon to strengthen my heart and lungs before the op by doing as much walking as I could manage I was told this too, but was on daily radiotherapy until 2 weeks before the op date so I kept going with my normal routine but could have done with a bit more of a window. Sadly no one told me to gain weight

Your op sounds hardcore!

Oh, meant to say Purple that it’s true as the chemo I’m having is designed to target fast dividing cells.
If the pathology results had come back as low grade they would probably have gone down the “Watch and wait” route as low grade doesn’t respond well to chemo generally.

Having radiotherapy and trying to add in extra exercise must have been bloody tough Namechange. Did you recover well after your op?
I do wonder if being doggy owners has helped due to all the walking we have to do. Most people wouldn’t go for a walk on a bitterly cold January evening but you don’t have a choice when you’ve got a dog. Those daily walks must help general fitness levels mustn’t they.

Namechange I have a port. They are generally lower risk than PICC line as there's nothing exposed except when it's actually in use. It's quite unusual to get an infection, I think! I'm very impressed you're managing all that while on XELOX. I had eight cycles back when I was first diagnosed and I basically spent the whole six months throwing up!

Aimlessly I found it painful to touch my phone and iPad screens when I was on oxaliplatin so my dad bought me a pair of touchscreen gloves. Not the most stylish of accessories, but it meant I could use them comfortably :)

pandora good to hear from you. That's a relief about the genetics, but sorry to hear about your hands. Have they recommended any moisturiser for it? I found a really good one when my hands were peeling. I'll see if I can find a link. It was a few years ago now, so not sure if they still make it!

Found it. Neutrogena deep moisture comfort balm. I tried loads but that one was the most soothing whilst still actually moisturising the skin.

This is one of my felines Bellatrix! Hermione is hiding away! And yes, I'm being serious.
@Pandoraslastchance you have a ferret, fantastic is it quite mischievous?
I'd also heard that the more aggressive the cancer the better it responds to chemo.
I've got 2 kids 4 and 7 who I'm currently Disney mumming! I'm usually quite strict but they've been fantastic.

Hi folks

Oops sorry posted too soon... I was diagnosed with breast cancer in April , had a lumpectomy followed by 25 sessions of radiotherapy. Unfortunately 2 days after finishing rads I found a lump on the other side; back through the system I have been diagnosed with another primary breast cancer and was recommended the same treatment but I have asked for a mastectomy this time (should have had them both off first time round!) will have to wait for a mastectomy on the right breast due to the recent radio. Family history but so far genetic testing hasn't picked anything up. I'm 45 with 2 DDs a very patient DH ... mostly... and a large dog

Hello, today I was referred on the 2 week referral for an ultrasound. Dr isn’t sure what’s going on but she is certain it’s gynae related.

Symptoms include -
Severe lower abdo/pelvic pain
Lower back pain
Abnormal discharge
Fatigue
Bloating
Difficulty urinating

I’ve had bilateral dermoid cysts before and I am hoping it’s just them back.

Doc is treating me for PID in the meantime.

Time will tell.

Any handholding would be appreciated

@Mrsemcgregor, sorry your here but hopefully it will all be fine. Handholds are very good here

Thank you ranoutofquinoaandprosecco

Ugh the bloody two week wait that feels like a 2 year wait! I remember it well.

But a lot of people are referred on that pathway and get cleared straight away. So take the hand holds but don’t panic yet

I can confirm I do not have 59 DDs

Dd is at her dad's tonight so I'm relishing a) not having to cook or eat a full evening meal and b) stuffing myself on Gorgonzola accompanied by red wine... bliss

MrseM have another hand

Does anyone else get copied in on letters from consultant to GP? I’ve just got home ready for a night out forgetting cancer and found one on my mat. I’m not even opening it. I never find they cheer me up!

Aimlessly I just thought, have you tried Apprepitant? bnf.nice.org.uk/drug/aprepitant.html

I had to ask for the best anti emetic they could come up with as I hate nausea so much, but I find it really good.

Hi!

I was just looking for the last thread as I hasn’t posted for a little while, and instead I find a shiny new one with added felines. And TQ having what sounds like my ideal dinner (though I can’t complain as I’ve just a target nice Indian takeaway)

Quick intro: I have leukaemia (CML) which was diagnosed on October last year. It’s incurable, but can be very effectively suppressed by targeted cytotoxic drug. I am currently stable on this - that’s how I want things to stay!

I also braved posting a thread in AIBU, as it’s blood cancer awareness month this month. Quite something to read how many MNetters have had their lives touched by the various types. And how lucky I am (as far as one can be lucky when one has cancer at all) that I have a kind with a gentle and usually highly effective treatment.

Aww ranout she's lovely. Very svelte. My Ivy is rather stocky bless her.

Another handhold here MrsM.

I also have a 4 yo and a lovely DH. DS is going to be spoiled rotten this birthday.

aimless that sounds like some operation!
That's good advice about walking lots. I hadn't heard that! You're all much better and more reassuring than Google ❤️

@Namechangeforthiscancershit yes I get copied in to all sorts / I have started filing all my letters into a document holder else I can't keep up!

Hi MrsM - Another one here wishing you well and another hand to hold.

Tahiti - So pleased you feel a bit more reassured. You will have wobbles but they do pass (And generally more quickly if you can resist using Google!)

NameChange - I don’t think I’ve tried Apprepitant. I have Ondansetron, Domperidone and sometimes Buscopan helps. I also had steroids for the nausea before and after chemo for a few days but can’t remember what they’re called as I threw the packaging away when I finished them.
The best anti-nausea pill I had was in hospital but I don’t know what it was called (It was square and very pale blue - Anyone know?) I only had it once when the other tablets were not easing the nausea. It was brilliant - knocked me out for 14 hours! Was odd at first and my arms and legs kept jerking involuntarily but after about 20 minutes that stopped and I slept and slept!

Ranout - Bellatrix is such a pretty girl. It’s lovely seeing all the pets!

Minnie - Is it your DSs birthday soon? I hope you all have a wonderful day

Leslie - Thank you for recommending Eco-Hydra Hand Sanitiser. My Boots didn’t stock it but they ordered it for me and I received three bottles of the foam today. I didn’t know you could get hand sanitiser that kills Noro-Virus. My elderly Aunt is getting some too. We both live in fear of Noro-Virus!

Sounds like you’re having a lovely evening TQ Enjoy!

I forgot to add my age etc...

I’m 44 with 3 sons. They’re 25 (He’s currently travelling across S America. Only bought a one way ticket and will be home when he runs of money he says), 21 (22 next week) and has mild Aspergers so doesn’t really engage in this cancer crap and youngest son is 12. He’s quite upset about it all but is trying to be brave. He’s seeing someone at school every two weeks to talk things through. Also have a lovely DP and five very silly dogs Have added a photo of Winnie the Pom.