CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

Plugged in again- at third attempt unfortunately. Caelyx is pinky orange, as my wee will be too apparently! So far so good.

Hi TQ - glad you got going eventually. The Caelyx colour surprised me too ... haven't got neon wee yet, but I'm hopeful!! We decided we would jazz up chemo by introducing 'themotherapy' - green for Halloween, pink for Valentine's, glitter for kids! Well, we had nothing else to do for a few hours! What did you get for your take-home drugs? I got anti-sickness, steroids and a neulasta shot. Hope you continue to feel good. I'm just relieved I didn't have an allergic reaction to the Carboplatin yet! Fingers crossed. xx

Ghoul - so glad you have a good oncologist and a good plan. It makes things so much easier if you like and trust them. Fingers crossed for the bone scan and ct x

Hi Nicky
glad to hear you're OK too. Were you expecting a reaction to the carbo?

In my party bag I have:
movicol for the inevitable constipation
benzydamine for mouth ulcers, which I've managed to avoid so far
metoclopramide for potential nausea
dexamethasone steroids for the next 2 days

I'm normally OK for chemo day and subsequent 2 days so we'll see Sunday and Monday..

Hi TQ I had a little one after cycle 2 of second line chemo; they weren't sure if it was the Gemcitabine or the Carbo, but suspected the latter. It was easily dealt with and I got Piriton IV after that (which they put in the regime for me today) - I was hoping it would be ok. I have Granisetron for nausea but try not to take it as it exacerbates my sluggish bowels!! Can't take metaclopramide as it makes me twitch! I have the Dexy's Midnight Runner steroids too - and like you, when they run out is usually when I feel a bit ropey. Are you on a 4-week regime? It'll be interesting to see how the 'slow release' action of the Caelyx feels over that time. Cheers to a good reaction and a good response for us both.

Leslie were you in the Thursday club today or are they still giving a longer interval between chemo for you? x

Hi TQ I had a little one after cycle 2 of second line chemo; they weren't sure if it was the Gemcitabine or the Carbo, but suspected the latter. It was easily dealt with and I got Piriton IV after that (which they put in the regime for me today) - I was hoping it would be ok. I have Granisetron for nausea but try not to take it as it exacerbates my sluggish bowels!! Can't take metaclopramide as it makes me twitch! I have the Dexy's Midnight Runner steroids too - and like you, when they run out is usually when I feel a bit ropey. Are you on a 4-week regime? It'll be interesting to see how the 'slow release' action of the Caelyx feels over that time. Cheers to a good reaction and a good response for us both.

Leslie were you in the Thursday club today or are they still giving a longer interval between chemo for you? x

oops, sorry for the double post. no idea why that happened ... beyond my own incompetence of course!

Glad you've got a plan you're happy with Ghoul.

I've spent much of the day in the oncology suite learning about my wonderful chemo capsules - would have been less of the day of the hadn't needed 20 mins to find a vein, only to lose the blood they took and have to call me back to do it again! Luckily she found a better vein in my other arm on my return trip or i might still be there now! Back there again tomorrow to pick up the meds and get started - 5 days of capsules then 23 days off per cycle. I'm almost excited...

Oh no LittleGreyCat that sounds like you had a annoying day yesterday. I hope everything goes smoothly today

Thanks nickyplus2 I’m feeling relatively relaxed today as it feels at least like their is a plan.

Good luck TQ - they said to me that some chemo can causing red wee - I was relived it wasn’t drug. I’d be panicking all the time.

Big hugs to everyone else.

purple glamorous indeed how are you feeling now?

pepper I hope you had a good sleep after your infusion :) good news about your blood results and fingers crossed for your oncology appointment

Ghoul I'm glad you have a plan. The good thing about having chemo first is that they can see how it is working. Fingers firmly crossed for your scan results

Twitter do you think they'll consider a port or PICC line now you're having more treatment? I know you weren't keen before though

I hope you and nicky have minimal side effects

nicky good news that you avoided a reaction. I have IV piriton too. Did you feel sleepy afterwards? Some people get so sleepy they have a nap. I've only managed that once! Too many distractions.

I'm on Tuesday again this cycle because they didn't have space for me on Thursday but they've already booked me in for the Thursday in the next cycle so hopefully I'll be back to Thursdays from then on. I'm having a mix of two and three week cycles at the moment to fit around social engagements

LittleGreyCat I felt weirdly excited before starting chemo too. It feels good to be doing something. Good luck today

I have started my steroid inhaler and I'm sure it's already helping a bit, though that might be wishful thinking/placebo effect. Either way I feel a bit less breathless so I'm pleased :)

Hi Leslie
Glad you're feeling a bit less breathless. I hope your cough is OK now?

I'm not going to have a PICC line. I'm on a 4-week cycle now so I see no point in having to endure (psychologically, not physically) a line 24x7 when the treatment lasts only a few hours each time.

I don't get Piriton with the Caelyx. I did used to have the odd nap last time around - but I think it depends how far away you are from anyone else and whether or not you get the comfy recliners or the upright green chairs.

I'm the nap queen! I quite often have a little snooze (but I am in a recliner) and yes, piriton makes me a bit woozy! The piriton was for the Carbo not the Caelyx. I must say that I absolutely love my port - but I have terrible veins - and they use it for bloods/fluid out and ct dye as well as the chemo. But absolutely horses for courses. I'm glad the breathlessness is improving Leslie and that they're managing to fit the chemo round your hectic social life!!
Hugs to everyone else xx

@nicky I am here chortling at Themotherepy although I think this is the only place where that is kind of ok to laugh........

Just a mouth ulcer question. Is it a common side effect of various meds? I'm plagued by them, and the afatinib also gives me cystitis which as a combo is pretty annoying. What have you found best for treating mouth ulcers.

ILoveDolly yes sadly mouth ulcers are a common side effect. I have found Corsodyl mouthwash helpful (it has warnings about staining your teeth with prolonged use but that has ever happened to me). Also Bonjela or Iglu gel depending where the ulcer is located (Iglu is great as it forms a thick protective layer, but doesn't really work on the tongue!). The chemo unit gave me Difflam, but I found it didn't really help with the ulcers, only sore throats. I hope they clear up soon. Cystitis is grim too

nicky just spotted you said they use your port for CT dye. I'm excited to hear that as I've just had my appointment for my next CT. It is not for a while yet, but should be the day after my usual blood test so I was wondering if they might be able to leave the needle in and use that. Usually I have to have a cannula because the CT techs can't do ports. Is yours a chest or an arm one? And do they have to use a special needle? Sorry for all the questions, but nobody has been able to tell me for definite whether mine can be used for CT I'm glad you manage to sleep during chemo. It's a good way to pass the time!

Twitter ugh my previous chemo unit had some of the upright chairs. Thankfully the one I am at now only has recliners! Oh yes you definitely wouldn't want a PICC line for only once a month access. Hopefully your veins will recover a bit now they aren't being used as frequently.

Hello Lacies
I haven’t been on this thread for a while. Dx breast cancer late 2015, Mx, chemo, Herceptin and rads, and have been trying to put cancer behind me. Just before Christmas I found a collarbone lump. I have had a biopsy and CT scan and back on Monday for results. The BCN looked pretty serious and the follow up letter from the ultrasound isn’t very encouraging. Scanxiety time.

Oh bugger Mysillydog I have everything very firmly crossed for your results on Monday. Will someone be going with you to the appointment?

Maybe my husband. I’m not sure, I haven’t told many people. I came away from the appointment feeling quite optimistic because they said it was not a Supraclavicular lymph node, but the letter I received today says lymph nodes are swollen in the area of the mass.

I can't offer anything useful, but will be holding your hand until you have some answers. Hopefully it's some sort of infection type thing.

Good morning lacies.

mysillydog I can imagine how you feel, having been through this several times now. I'll be thinking of you and hoping it's nothing to worry about.
Leslie you're a star as always keeping everyone in mind and supporting all. I'm so sorry to see many newbies, but welcome all and this is a very right place to be.

mrs hope all's well with you? How are you doing now?
Wishing everyone here as good a day ahead as possible.

Hi to mysillydog - as the others have said, I'm sorry you have this worry; I hope the results are better than you fear and sending you a hand hold in the meantime.

Leslie - I have a chest port; they leave the gripper needle in from bloods or I visit oncology before the scan and they do the needle admin. Then the radiographer just attaches the curly dye wire to the tube and opens the clamp and then alcohol wipes the tube end before re-clamping. Then afterwards I go back to oncology for the needle removal/port flushing. Hope they can fix that for you x
IloveDolly - it's probably not everyone's cup of tea, but it helps me to find silly things funny in the grimness! I've been fortunate not to have a very sore mouth, but agree with Leslie that Corsodyl seems to help head things off. I think there are stronger meds that the drs can give you to help though, if you need something more effective.

Hi royal how are you? mrsrhod hasn't posted for quite a while so I hope she's OK

nicky ah right. Mine is in my arm. The arm ones are smaller so there was some doubt about whether it was safe with the contrast pump thingy. I'll ask again because it's such a nightmare getting a cannula in!

I like to laugh about it all too, though I occasionally get a raised eyebrow. And I once made a friend cry

Sorry I meant to say thank you for answering all my questions

Thank you Leslie, I'm waiting as patiently as I can while resisting the urge to google lots!

@ggirl the hemi-colectomy was ok, I had an open procedure as the cancer had spread to surrounding lymph nodes and the surgeon wanted a good look around. I was out of hospital on day 7 which in hindsight was a bit too soon but I needed to be home and promised I would return with any problems. I was back to work part-time (I have quite a physical job) after 8 weeks and full time 3 months later however may have rushed that too as I suffered badly with fatigue for a year. I would say take your time and don't rush things and you'll be fine, good luck.

Good luck to everyone waiting for results and to you all having treatment I hope you stay as well as you can.

wombat if you're lurking I hope you are recovering well

likeazebra well done on resisting the lure of Google! :)