Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Hello everyone

chasegirl - I hope the work thing goes okay. It might be a box ticking exercise but they could write the letter calling you nicely.

chasegirl I had exactly the same as you .. they gave me 3 weeks radiotherapy... it makes you very tired but is ok .. I have tamoxifen for 10 years ... I'm 8 years In now ! Currently awaiting results from routine mammogram I had last week and feeling a bit wobbly ... they thought mine was calcification.. then dcis .. but found 2mm of cancer...

Thanks grey I will definitely check them out!

dulce I’m in Yorkshire - where are you?

Am currently sitting in waiting rm waiting to see oncologist - it’s the same place as chemo and I feel quite nervous but not as bad as I thought I’d be! Hoping they aren’t running too late and have my list of ‘demands’ at the ready

Hope everyone is enjoying the heat more than me - managed to get the first half of my sons sports day and have almost melted completely!

to all!!

dulce I wonder if that person has a different type of tumour - as in, not adenocarcinoma? There are a few different types that can grow in the gut and maybe she has a rarer type??

Afternoon all, thanks for the new thread purple.
My lumpectomy and sentinel node biopsy took a good few weeks to recover from, overnight stay but came out with a drain for a few days and was very sore. To cheer you further the blue dye they use for the SNB stains the skin. I had a blue boob for 15+ months (yes, months...)
I rang about my follow up to the oophorectomy and apparently histology takes c2 weeks and they'll phone or write, then check up will be about a month. Obvs my real fear is that the letrozole was ineffective because my ovaries were too perky and they find cancer cells . Mostly I'm ignoring that though!
Potted history, stage 2 breast cancer diagnosed 2016 which had spread to my lymph nodes, lumpectomy, chemo, rads, tamoxifen then letrozole, zoledronic acid 6 monthly, and just had my ovaries and tubes out following a surprise period ....

15 months pepper!!! My mum has just had SNB and obviously thinks it should have disappeared overnight!! I won’t tell her about you! Is it cheeky to ask how old you are?

Have seen oncologist and waiting for some sleeping tabs and lorazepam to help for the next 48h. Also have reduced dose poxy oxi and super-strength anti sickness tabs so hoping this cycle will start less dramatically!

Adle that's good news. What was your dose before and what is it now? I'm not sure what mine is! For xeloda I take 3 big ones and 2 little ones twice a day. How about you?

I hope your next cycle is better and all the meds help you through it without as much drama as last time! It's the 3rd out of 4 so over half way.
I'm in NW London.
Good point about the type of tumor. All I know is that hers is on the left hand side whereas mine was on the right. Wonder if that makes any difference?

I feel like a lorry has ran over me. Would give my kingdom for an ice lolly but can't stand anything cold so am just melting in a pool of sweat and self pity.

On the plus side I have 13 days left out of 77 days treatment. Not that I'm counting either.

Leslie may I ask you a question? I've read on the bowel cancer website that when it spreads to one organ (ie lungs or liver) it is curable, and only when it goes to both it's deemed incurable. Do you mind telling me why they told you yours isn't when as far as I know your liver is ok?

Alicatz66 that must be very stressful. The waiting is awful.

And 15 months Pepper!?! That's a long time to be blue

Work thing was OK in the end so am OK with that.

Hi everyone! Thanks for the new thread, purple

Though I hadn’t been posting much in the last few weeks.

Recap: Last October. I was diagnosed with leukaemia (CML) 48 hours after a blood test for something completely different. I’ve responded well to the targeted drug (not chemo in the classic sense, but still a cytotoxic drug). It’s one tablet daily, and I have escaped the worst side effects (I have a litany of petty gripes though!)

It has made one liver enzyme too high, but that has plateau’ed at an acceptable level and everything else is normal. So I don’t need to be seen again until September (so I can spend the summer pretending I’m not ill).

I’m still waiting for results of a very detailed blood test, which would show if there remain any detectable abnormal cells in circulation (fingers crossed). And the saga of the liver cyst (benign, incidental finding in an early set of tests) goes on. It’s shrinking (good) as are both liver itself and spleen (typical, drug reverses changes to liver/spleen caused by the leukaemia). And they want another squint at it in another six months.

(I shall now lope off and catch up on everything in the latter parts of the last thread)

results after 2nd lletz being discussed at mdt meeting tomorrow although was told its 95% cancer but "further up"" whatever that means?? been a long 2 week wait but s

well that posted early....strangely willfeel better one i know the plan... x

Good luck tomorrow basher - sometimes the waiting is worse and as you say when you have a plan you can start to deal with it all and fingers crossed things are better than you are fearing

Addled that's great. Glad they have a plan and some nice drugs for you. My ng tube strategy in the end was to get them to give me lorazipam before I had Ng tubes in - great stuff.

Dulce I don't know if you are on the beating bowel cancer forum but there are lots on there that have had pre-operative chemo. Guess just depends if needed to shrink - like Leslie says. They didn't have much choice with me as bowel was about to explode. I'm in Canada now but was in UK until two years ago.

to those waiting on tests.

Thanks for the info regarding the lumpectomy freddie and pepper...
Fingers crossed it is ok then and my boob doesn't go blue for the foreseeable!! It will probably entertain my daughters if it does as they quite like the smurf movies k& I may be able to convince them I am part smurf!

addle glad you have sleeping tablets and lorazepam to help with this next cycle. Well done on getting to sports day too, did you leave everyone standing in the Mum's race or make a hasty exit just before?!

dulce I hope you are feeling better now it is a bit cooler. Does having a soak in the bath at the right temperature help during chemo? Sounds awful being so hot but unable to tolerate anything to relieve the heat.

Hello waves & to everyone. I hope everyone is managing OK in the heat and it isn't making the symptoms any worse.

Good to hear from you ivampire, enjoy your summer off! Did they say when you'll be getting your blood test results back?

Good luck today Basher

I've bought myself a sun lounger to spend my last few days before work lazing around in the garden. I'm seriously debating hiring a cleaner for an hour or 2 to do my housework, far too nice to be hoovering and dusting

Good morning

Sun lounger sounds fab purple :) I got a big inflatable one from Lidl and it's very comfortable!

I'll reply properly to your question later Dulce as about to nip to the gym, but just wanted to pop in and say good luck to Mrspotter and chasegirl for today and fingers crossed for your MDT results basher do you know when you'll find out?

addle I'm 49, I was diagnosed the day before my 47th birthday!
To be fair, at about 14 months in, the registrar let a trainee look at my blue boob to demonstrate how long it could last so I suspect i' m very susceptible to the blue dye . My surgeon said 2 years was the longest he'd seen.
Good luck today everyone, I'm off for my zoledronic acid this afternoon non stop fun .

i should find out hopefully later this afternoon she promised she would call, have the kids prize giving assembly shortly so that will help pass time x

Sitting waiting to see surgeon (running an hour or so late) and just had a call have a pet scan tomorrow - any thoughts as I am currently scared, was told the staging scan was clear.
Want to go to toilets and cry .... hubby is with me and as confused as me.....

Mrsp it will just be to double check everywhere else is clear, they should have told you why you need one instead of letting you worry. Maybe ask your surgeon, they might know why you need one

Good luck with your appointment

Surgeon was fuming! As a badly controlled type 1 diabetic there is a huge chance I can't even have a pet scan, he's thinking a follow up ct scan. They haven't found anything anything in any of the usual areas but they've found a nodule behind my breast bone and they want to see what it is. They are pretty certain it's a thyroid thing (can't remember what he called it - he's going to write everything down and send it to me) and lots of people have them and nothing to worry about!
Next stage, regardless of tests is oncology and I should get an appointment letter through pretty soon!

Dulce my lung tumours are inoperable due to their size, number and location. And I also have lymph node involvement. So even if they could eradicate the lung mets there would still be cancer cells sloshing about in there.

Where did you read that about it being curable? It seems a bit simplistic as even with just one organ it depends where/how big/how it responds to treatment etc.

Mrspotter I hope your appointment was reassuring

Oops cross-posted. How frustrating. I hope they can organise the CT quickly and that it is something harmless. And I hope you get your oncology appointment quickly too

Thanks xxxx

Hello all. Had my first appointment with the consultant radiologist thus morning. It went OK need to go back for a scan and tattoo so they know where to aim.

Sat at home now just feeling quite anxious and low. Worrying about it coming back and that sort of stuff