Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) 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 your best place for support is probably on the Life-Limiting Illness board.

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

[Brassica]

Hello all, lots of news to catch up on in the last few days.

Tahiti, when do you expect your results? I can only imagine you’re nervous

Bridget, how was your second appointment?

Gib, glad your op feels as if it’s gone well. Are you sore? How many nodes did they take? I wish you a speedy recovery.

Diary, you may well see a better/more impressive response from FEC. I had my EC before pax/carb and my tumour responded really well AFAIK. Hopefully it will be the same for you. They are hardcore drugs as you know from the side effects so let’s hope they whack it into submission. If you’re concerned perhaps you can ring your BCN? Sorry that you are feeling a bit blue though and I don’t blame you

Yay meercat for your final chemo! The sore hands sound really unpleasant though. Have you been told how long that might last for? Good luck for the rads phase.

Wow Ben, sorry to hear about the hospital stay. Are you feeling better? This whole experience is so hard on our bodies. I hope the picc line settles down well and improves the delivery of drugs. Did you ever join the Facebook group I mentioned?

Welcome back Emperor, who were you before? The last thread was my first one so hello if we haven’t met before. The lung biopsy sounds well worth dreading but I hope it’s way better than you fear. I presume you’ll be sedated at least? Any idea when it’s happening?

News from me is that I finally felt better after final EC once I’d written off 6 whole days in bed and am doing ok again now. I had kidney function tests during the week ready for starting pax/carbo on Tuesday. Slightly dreading that (fear of the unknown) but hope it’ll be easier than EC.

In my desire to rejoin the land of the living I had a tennis lesson today but my legs were a bit sluggish. I managed to trip over my own toes quite early on and crashed down to the ground on my hand. Decided it was ok to play on but that seems to have been a stupid decision. My wrist really kills now and I can’t use it for anything. So that’s disappointing!!

Waves to anyone I’ve missed.

[Bloodybridget]

Hello all. I've read through recent posts, and hope new drug regimes work well (especially for Diary), congrats to gib on getting through surgery and keeping breasts; sympathy to Meercat re sore hands, good luck to Tahiti re results; Ben, hope the PICC discomfort doesn't last long. Brassica, glad to hear you are feeling better, what bad luck that you hurt your hand! Ice?

My appointment with the oncologist felt like another body blow, actually; they want me to start chemo before I go away, as apparently it's more effective the sooner it starts after surgery. That means some anxiety about what will happen if I get an infection after chemo - I won't go through the whole scenario, but I think it's still doable, having had a chat to a GP friend this afternoon. Also oncologist described chemo as "delaying recurrence" and went on to say "but it could be [delayed for] years"! This did not strike me as good news - I don't want any recurrence ever, and certainly wasn't thinking it could happen in less than a year!

Anyway, I won't go on about this, there are so many people going through and facing far worse than I am. But yesterday and today I have felt so tired. And DP has been upset.

[Toofaroutallmylife]

Hi bridget - I’m sorry you and DP have had a tough couple of days. I think it’s hard when you’ve had major surgery and then have to get your brain around more treatment.

When I started adjuvant immunotherapy after my melanoma was removed, the aims on my consent form were to “prevent recurrence and prolong life”. They’re both good aims, but it’s bloody hard to see them in black and white!

Hope you get some rest and feel a bit better soon

[SnowsInWater]

Hi to everyone and sorry for not addressing people individually, as Chemo has progressed I get more tired! One more round of dose dense Taxol for me.

I saw my surgeon yesterday and my double mastectomy is all booked in for 1 August. I thought he might try and persuade me against the double but he just said he understood that was what I wanted so that's fine. In some ways it is nearly easier not having too many decision points, Inflammatory breast cancer is rare and aggressive so gold standard care is to chuck everything at it. I have been feeling really down lately so it's good to have a plan but I still find it totally surreal that the idea of losing both breasts has become a good thing in my world!

Virtual hugs to all, especially those of you waiting for results or who have had not great news recently x

[mrsed1987]

Colonoscopy today to check my symptoms. Prep not quite as bad as i thought it would be. First dose was 6pm last night and managed to go to bed from about 10.30pm and didnt need the loo all night lol

Wish me luck for this afternoon

[BenWillbondsPants]

@Brassica, thank you, yes I'm feeling OK now apart from starting to get the post-EC crappy feeling. I did join the group, thank you for the recommendation it's been a bit of a godsend to be honest.

I hope your Carbo/pax goes well and your wrist feels better. Good luck!

[Brassica]

That’s good, Ben, glad to hear the group is useful to you. Hope the EC side effects pass quickly.

Good luck for later Mrsed, I don’t suppose you’re relishing the idea of it so I hope it’s quick and easy and that the results in due course are good.

[Diaryofalways87]

@brassica, I can now confirm that FEC is a bitch compared to the other chemo I had. I'm glad you're past that bit. My taste buds have disappeared, I'm so tired and feel sick. So glad this is 3 weekly, not weekly. I hope you find the next 12 weeks more bearable.

[Diaryofalways87]

@brassica, can I ask, are you part of the Partner Trial?

[WTF99]

Hi all!
Just checking in. I follow the thread daily and find it really interesting and helpful to read. Sorry not to extensively name check. I'm on my phone and scrolling back isn't easy, and as for my memory....well, no chance! I do feel for those having a hard time or going through uncertainty.

I'm trying to have a nice weekend before FEC no.2 on Monday. I've got myself ready with easy to prep food, nice fizzy drinks and ice lollies, a visitor for every day next week plus books and a Netflix watch list for when I'm feeling a bit crap. Last time I did push myself to be active during the first week when I was suffering side effects, thinking that I couldn't just give up for the next however many months. But now i know that I'll feel better later into the cycle, i am going to be kinder to myself at the beginning. I saw the oncologist last week and he's tweaked my anti sickness meds so im hoping the nausea won t be so much of an issue this time. I'll also be taking paracetamol as soon as I feel any bone pain. No doubt there'll be some other weird side effect waiting to knock me sideways but I am feeling more ready this time and actually can't wait to get it done and another one ticked off.

The last 2 days my hair has been falling out Not in handfuls (yet) but persistently and noticibly. I'm going to cold cap on Monday but Im thinking I might not one of the lucky ones for whom it works.

@Noodles44 your treatment regime looks similar to mine. Could you tell me what it was that you found tough about 2 of the docetaxel cycles? Just trying to prepare myself, although that's a way off yet.

Wishing you all a good day. The sun is shining here at last

[noodles44]

Hi all,

WTF My first Docetaxel was tough possibly as it was only 2 weeks after the last EC. I had strong nausea after (even though you are not as affected by nausea on this) the consultant still gave me strong nausea tablets as said I likely had anticipatory nausea too after feeling so sick for so long!

I had a really sore mouth at the corners and inside. I received meds for this for the next round but it didn't bother me after that anywhere near as much again, so I didn't use them.

The aches/shivers/flu feelings hit me worse on a couple of rounds too. I took stronger painkillers for a few days, kept some by my bed at night too, extra blankets in bed and experimented with what time of day I did the self injections as they usually made me feel peculiar on a certain day. Mornings worked better for me than evenings.

One round gave me a few epic nosebleeds, the advice is to put tampons up your nostrils. Due to lack of clotting etc my worst one bled for over an hour as I didn't know the tampon tip & couldn't stop it bleeding.

There was the usual constipation followed by dire rear (haribo sweets help with that)

It was doable though and I just rested/slept as much as possible when I felt grim. Plus you are also on the last leg of the chemo, so are counting down which is a boost. Weirdly you can feel quite flat after the chemo stops before the op (I did) this is normal too. Cancer really messes with your head.

I hope that helps. I know other people who didn't have too many side effects on Docetaxel, so hopefully this will be you.

[mrsed1987]

Good news, colonoscopy was clear. Took a few biopsies so just waiting for the results of that in due course.

x

[WTF99]

Thanks for this @noodles44 really helpful. Can I ask, did you have side effects throughout the 21 days on docetaxel or did you have part of the cycle where you were feeling ok? On my first FEC I've had a block of a good 10 days or so where I've felt pretty good really. Hoping for similar on the next 2 cycles and then it's docetaxel.

[noodles44]

wtf I found I started to feel better by around day 8 after the Docetaxel. I usually had a good week & weekend where I planned stuff/friends visiting and was generally ok. I was probably at my worst for about 5 days and it was the same days each cycle.

[noodles44]

With EC I felt rotten more or less the entire time & was ok for the day before my next chemo. That was fortnightly tho, so I fed had more ok time.on the Docetaxel which was 3 weekly x

[noodles44]

Def not fed!

[BenWillbondsPants]

I've just had my second EC and feeling pretty shitty. My hiatus hernia is acting horribly and I feel permanently sick. Is that usual for EC?

[Bloodybridget]

Mrsed that's good news re colonoscopy. Hope biopsies will turn out ok too. Ben, sorry you are feeling so rough - have no experience of your regime myself, waiting for a date for my first chemo.

[iVampire]

Best wishes to all those feeling rough, and hopes that the coming week will be on an even keel.

Nice to read good news about the clear colonoscopy!

Also to see you posting again, tahiti - I was wondering where you were (and hoping not still in isolation)

But so sad to read about Aimlessly

[SnowsInWater]

Are you ok TQ? Haven't seen you on here since last week.

[redspook]

I haven't posted for 10 days or so because in reality, I'm no further forward.
After CT/MRI/PET scans my appointment was cancelled pending referral for sigmoidoscopy. When I hadn't heard anything for a week, I rang (took two days to speak to someone) to be told that the colorectal team were reviewing the request last Wednesday.
On Thursday I was told that there was a result of that review, but it hadn't yet been looked at. On Friday i was told that it had been looked at, but further information was needed. The person I spoke to last week was helpful, but not clinical so could tell me nothing about what will happen next. She said she would call me again today, but nothing yet.
I have no appointment, and no information unless I call. it seems as if various departments are (slowly) talking to each other but no one is talking to me.
It's really shit, I have been spiralling for four weeks now and don't know what to do.

[meercat23]

redspook that sounds rubbish to cope with. Four weeks waiting to know what will happen next is a long time. I hope they get things sorted out quickly.

[redspook]

Thanks meercat.
I've had a call, and the treatment is definitely combined chemoradiotherapy. I was told this two weeks ago, but the plan was then sidetracked by the colon concerns. I'm pleased that they have looked at all possibilities before making the final decision, but it's been a long wait.
i'm now waiting again, for an appointment with the oncologist to discuss the plan etc. They couldn't say when that will be, but hope that it will be "within two weeks". So yet more waiting, although I suppose I should be a bit calmer now. However, i don't feel it yet.
Thinking of all those feeling rough right now, I'll need some of your strength.

[Walnutwhipster]

Not me but DM is in the final stages of ovarian cancer, which has spread rapidly. It was only diagnosed in April. She is in hospital, very weak and tired but amazingly not in pain. It's awful watching her fade away and they've said today she will go to our local hospice shortly. I feel so helpless.

[Borntobeamum]

Aaargggh. I’ve just had a phone call from my CR Nurse.
In February I was diagnosed with colon cancer.
In March I had a right hemicholectomy to remove the cancer.
I wasnt tested for Lynch Syndrome, but after being advised by someone on here, I rang and asked to be tested.
Apparently I tested positive for Lynch Syndrome.
Can anyone offer me any advice please as to what happens next?
Thank you x