We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Glad you're feeling better Leslie. They've stopped my Avastin as they think that's what caused my fistula, it will mean an hour less in the chemo ward other than that the other 2 lots are the same as far as I know

Hi Purple It's great you've got an early chemo appt. Taxol and Carbo I think? The first time is always the worst, though because you've had a break for your op you may well find this counts as another 1st. Having said that, it wasn't too bad at all after my op and I had to delay resuming chemo because my wound hadn't healed.

Looks like I'll be back on the chemo treadmill soon. CA125 blood marker is up and I'm having symptoms. Now waiting for a CT scan appt.

Planned thinking of you and wishing you peace and love.

Leslie hope your adhesions are behaving themselves and that the pain has settled.

Dammit TQ I'm really sorry. I hope the symptoms aren't too painful/unpleasant and that the chemo can get things back under control quickly. Fingers crossed for a speedy CT appointment so you know exactly what's going on

planned thinking of you

purple hopefully you won't feel quite so poorly this time round if the Avastin was the really nasty one :)

Yes thanks TQ it has settled right down, thankfully :)

CT on the 13th. Discomfort rather than pain, thankfully (so far), though it is worse than I've previously experienced - I guess because it's in a different place (lower abdomen).

TwittleBee you must have started on your bowel prep by now. I hope you're not finding it too rough

TQ do you have decent painkillers if needed? Don't be afraid to ask for something stronger or a higher dose if it gets worse

Leslie it isn't till Saturday so bowel prep starts tomorrow, unless you count this weird white carb only diet 2 days prior? Not enjoying it, miss my latte haha

oh TQ that really is shit, hope that CT goes as well as it can for you.

Purple ah so potentially chemo might not be quite so nasty this time round? FX for you

Ah sorry I've muddled the timescales I was thinking two days, but thankfully that's just the boring diet and not the meds!

TQ yes it's still the taxol and carbo, I think out of the 3 the Avastin was the one with the least side effects.
Is there any chance they can squeeze you in any earlier for your scan? I hope you don't have to wait too long for the results. My symptoms are mainly lower abdomen too, no pain for me either but the discomfort is awful

Purple Avastin is the least toxic in terms of nausea etc but it is probably the one responsible for your fistula.

I'm wondering whether now is the time to go private ... I have cover through work so I may give them a ring tomorrow and inquire. I went private for my op because even though I was time critical I couldn't get a date. I haven't done so far otherwise because I'd be at the Royal Marsden for treatment, which is a 60+ mile hike into London whereas my NHS hospital is only 20 miles and a short train ride plus 20 minute walk, which isn't too taxing.... but then I would get seen more quickly and may get more treatment options. Perhaps I'll wait until I see my consultant.

Twittle can you have banana sandwiches?! my favourite...

Twotabbycats my lump was only 7mm and I had a biopsy on it, so I'm not sure how small "too small" is. I didn't have any other symptoms at all though.

Ooh I haven't had a banana sandwich since I was a kid, those and sugar sandwiches. Or was that just me
I'd definitely give your private insurance a ring TQ to see what they say. I know it's a trek but I've only heard good things about the Royal Marsden and there might be some sort of trial you're suitable for. I'm keeping everything crossed whatever you decide to do

TQ those are my mum's fav! And hope no fruit or veg allowed. I had plain egg fried rice for dinner though so wasn't too bad.

purple sugar sandwiches were what my mum used to eat as a kid too haha! I thought she was just the only one 🤣

Evening all!

Back home from a flying visit to Edinburgh, lots of fun... got right off the train back into three consecutive days in the cancer centre - what fun! 😂

purple you reminded me of the sandwiches my granny used to make us as kids - white sliced bread, butter, and golden syrup!! Sometimes with raisins sprinkled over for good measure! It’s no wonder I had so many cavities as a kid (maybe worth it tho 😁)

Leslie thanks for asking about the PICC - all went well, although it took quite a while to get it to go the right way, and to get it parked just right... funnily enough it got a test run pretty soon as one of the vials of blood that I had taken immediately after it was clotted, so I had to go back and give another one - via my brand new PICC! Soooooo much less stressful than having a needle (although they didn’t bother me that much for blood tests), and I am almost looking forward to sauntering in tomorrow and getting hooked up right away 😁

Sorry to hear of your adhesions and the pain they are causing you - I admire you for getting out and doing things when you can (I am trying to take a leaf out of your book in this regard, so thank you 💐)

noodles I am having 3 weekly herceptin, pertuzamab, docetaxel and carboplatin - I’ve had a goodly range of side effects but I have to say bone and joint pain have not been among them! Hope you swerve these too, and that your nausea is not too bad...

Love and good vibes to everyone else - I’m sorry for not replying to more by name - but I read everyone posts and you are all in my thoughts 🌷

TQ if you do end up going to the Royal Marsden do you have anyone who could take you/go with you? I know my hospital does patient transport which is free if you need it but if you just don't want to take yourself you can still get it but you pay each time and it works out much cheaper than taxis etc

Good luck with the bowel prep Twittle and dont stray too far from a toilet

Glad your PICC line went well Fuzzy I think I'm going to ask about one on Monday, carboplatin is one of the chemos I'm having

I've just ordered a TV for my bedroom as I know Thursday and Friday I'm going to feel like crap so I think I'll just stay in bed all day

That is rubbish that you are having discomfort again TQ
How long have you been off chemo? I have also only heard good things regarding the Royal Marsden, but can also understand your potential journey issues getting to & fro. Like purple says there could be a trial coming up that would be suitable for you. Best wishes for what you decide & hopefully a cancellation CT scan will come up too as the 13th is a way off still if you are in pain.

Sending love to planned thinking of you & hope you have got somewhere with your email to the Royal Marsden.

How are you feeling now purple after the antibiotics? Good to be getting back to chemo on Monday & hopefully with less side effects.

ranout when is your next chemo? I hope you have escaped too many side effects from your first round.

I had my 4th chemo today. No reaction thankfully, but feeling queasy (not as bad as from the last drug thankfully) had very little sleep last night due to starting steroids before chemo, so that is probably contributing. I have the docetaxel tomorrow.

Glad your pain has settled down Lesley that is a rock and a hard place dilemma regarding the decision to have a further op & potentially make them better or worse.

twotabbycats I have breast cancer and my tumour and one lymph node are affected. Neither were painful, just hard lumps. They did biopsies on both, but they were bigger at 2.5cm. They knew exactly what they were from the ultrasound. I was told if they were white they would have been fatty lumps, black a cyst and grey is a tumour (which could be benign or malignant) A month sounds a long wait if your friend is stressing, can she call back & see if it can be brought forwards. The waiting is the most stressful time, usually if cancer is suspected they work to keep within a 2week window.

Glad your PICC line went well fuzzy it does make life easier for bloods etc. I had my first chemo through my veins & have cording in my lower arm as a result which makes it feel bruised.
The nurse who did my bloods had one fitted for 2 weeks apparently when she started fitting them so she knew what it was like. She said the first week is the worst as your body is aware of a foreign body being there and you can feel it, but it settles down after that. This is how I have found it to be. I was considering getting mine taken out a few days in and now it doesn't bother me at all (apart from I cannot watch it be cleaned and hate the saline metallic taste when it is flushed as that also makes me feel sick!)
I would get one purple as it will help I am sure. How are you finding te stoma bags now? Are they fiddly to change or are you getting on OK with the Most? The to in your bedroom sounds a good idea.

I had a 2nd drug alongside herceptin today (I think it was the pertuzamab) fingers crossed for no joint or bone pain too fuzzy
They have given me 3 days of the strong epirubin (I think - am writing from a poor memory for drug names so it may not be called that at all) nausea meds which start 2mo as think I am getting nausea anticipatory anxiety which made me feel sick too on the last cycles!

That should have asked if you were getting on OK with them? Re stoma bags purple and that the tv was a good idea (my iPad has a mind of its own sometimes)

Hey lacies, just keeping up with you all and have skimmed the thread. TQ absolutely agree with you and others re BTFS - it's horrendous. I will never ever donate to Macmillan and I got my aunt to stop her regular donation to them too.

Sorry to see as ever there are more people joining the thread that no one wants to be part of, but it is a good place to be. Brief recap, I was dx with triple positive stage 3 grade 3 breast cancer in Nov 16, have had mx and recon, chemo, herceptin, rads, zolodex, exemestance, currently on bisphosphonates. I was back at the hospital the other week for my 6 monthly infusion, and boy, did it bring everything back! Also quite shocked to see that on my huge long list of original appointments now only have two remaining. Time has flown.

I was in hospital for oophorectomy last week. No more zolodex injections! It was pretty uneventful apart from nutjob in the opposite bed, complaining about the noise from the Flowtron boots they'd put me in. These were new to me, for patients at greater risk of clots I think (chemo, the gift that keeps on giving) - they sort of massage your calves every minute or so. She complained, got her henpecked husband to complain, and then tutted and sighed and glared every time the machine made a sound! I had a word with the nurse on duty to say how she was making me feel awful - it wasn't like I was having a spa treatment or anything! Well, the next time she complained, they were having none of it, they told her they were moving her, leaving me in a nice quiet ward by myself! She was not happy, but quite frankly, my sympathy reserves were exhausted by then. If the only noise in a hospital ward is the gentle sigh of one machine, I reckon you're doing alright!

Hey lacies, just keeping up with you all and have skimmed the thread. TQ absolutely agree with you and others re BTFS - it's horrendous. I will never ever donate to Macmillan and I got my aunt to stop her regular donation to them too.

Sorry to see as ever there are more people joining the thread that no one wants to be part of, but it is a good place to be. Brief recap, I was dx with triple positive stage 3 grade 3 breast cancer in Nov 16, have had mx and recon, chemo, herceptin, rads, zolodex, exemestance, currently on bisphosphonates. I was back at the hospital the other week for my 6 monthly infusion, and boy, did it bring everything back! Also quite shocked to see that on my huge long list of original appointments now only have two remaining. Time has flown.

I was in hospital for oophorectomy last week. No more zolodex injections! It was pretty uneventful apart from nutjob in the opposite bed, complaining about the noise from the Flowtron boots they'd put me in. These were new to me, for patients at greater risk of clots I think (chemo, the gift that keeps on giving) - they sort of massage your calves every minute or so. She complained, got her henpecked husband to complain, and then tutted and sighed and glared every time the machine made a sound! I had a word with the nurse on duty to say how she was making me feel awful - it wasn't like I was having a spa treatment or anything! Well, the next time she complained, they were having none of it, they told her they were moving her, leaving me in a nice quiet ward by myself! She was not happy, but quite frankly, my sympathy reserves were exhausted by then. If the only noise in a hospital ward is the gentle sigh of one machine, I reckon you're doing alright!

Ooops, posted too early there! And twice somehow. Just wanted to say hello really, I lurk and watch out for you all, and if I have anything useful to say, I'll add it. Talking of which, TwoTabbyCats - my lump was 7mm and I DID have pain. Even though it was tiny, and not much could be seen on the mammo, it had spread to 8 lymph nodes, one other breast tumour and high level of DCIS. It's a bit of a myth that cancerous lumps are painless, they are usually, but it's certainly not unheard of for them to hurt. Pain was my first and main symptom. Can your friend push for earlier investigations?

noodles thanks for letting me know how you got on with your PICC - I had three rounds before requesting one, and have three more to go. I also have bruising and cording - mainly from round one, 12 weeks ago now!! The second rounds I desperately heat wrapped to try and avoid the bruising (semi successfully)... but hope the PICC will be the best solution.....

purple I SUSPECT the carboplatin was the culprit for my vein pain and cording, so yes... PICC might be worth asking about early on!!

And (last post from me tonight) putting my hand up and saying my lump was also painful.... just a smallish tumour, but it felt ‘sore’...

Thank you ranout, minnie, noodles and fuzzy for taking the time to reply, and sorry that you have/had breast cancer.

I encouraged my friend to call the surgery to see if she could see another doctor, especially as she hadn't seen her own GP, only a locum. Luckily her GP (always very good) is back now, they've spoken on the phone and she's going to get it biopsied next week. (We're not in the U.K. and not sure what the rules are about referral times). Anyway a big relief for her as waiting and seeing for a month would have been very tough. I'm not sure what colour it was on the scan... I will ask if she knows though don't want to scare her. Doctors seem more worried about the yellow fluid coming from her nipple.

Thanks again from us both for the responses and for not minding too much that I barged in on your thread. All the best to you all