Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Bone mets, not bobe, and brufen, NOT Bruges (been there once, it was quite nice).

Oh, the autocorrect!

Hello everyone, lost you all for a bit there!

Chemo 3 done -hurrah for ondansetron which kept all sickness away. Bloody awful joint pain but the TENs machine is definitely helping and I feel human now on day 7.
Had the ct scan on Tuesday to see what’s happened to the tumour so am waiting for the feed back from that.
In that strange hinterland when I think ‘oh, how lovely, I feel better’ then think ‘shit-forgot about the cancer’. Like that lurch when you miss a step.

Was wondering about peoples experiences with ports for chemo.
I know a few people have had issues with them, but I was wondering how common it was. Yesterday it took and hour and a half to get a cannula in, as according to nurse my veins have had enough! Can only use my left side and she said may have to think about port. I really want to avoid something like this, but I suppose if they veins won’t support a cannula any more, I won’t have any choice.🙁

Hello all, just checking in- sorry I can’t comment on everyone but wanted to say I’m on round 3 of EC chemo next week and then weekly paclitaxel for 9 weeks. Breast cancer post lumpectomy/ lymph node removal.
@TwoBigNoisyBoys I have injections for 5 days which have been ok for me somehow- nivestem ? Is it worth contacting unit to see if an alternative is possible?
@Podgedodge I’ve only got one arm to use and first chemo nurse struggled with cannula. I’ve been wondering about port/ picc line( are they the same?) for 9x weekly. Spoke to chemo nurse who said it’s 50/ 50 whether people have them or not. Having to go to hosp for bloods instead of surgery etc, infection risk etc does bother me.
She also said some nurses are better at it than others- no. 2 was much better for me. She said some people request a particular nurse.
Really interested in others views.
Sending good wishes to all.

Thank you all so much for your replies re the injections…I’m thoroughly miserable here with agonising back-ache, swollen gums, nausea…all side effects apparently. I’m going to have to discuss whether I have to have them for my remaining 3 rounds of EC, it’s almost unbearable 😞

@Podgedodge I have a picc line, I had it fitted on 30th November, after two chemos through a cannula in my hand. Was advised to have it to preserve my veins, as I was due to have 16 doses administered altogether. Im not going to lie …I absolutely hate it. Mine has never really settled down to be honest, and it still feels tender now. (That’s not the case with everyone though, a lot who I’m in the ward with don’t have any bother). You have to be very careful with keeping it dry, in case of water carried bacteria leading to infections, so bathing and showering are difficult. I can’t lie on my right hand side, and I’m permanently conscious of it. I do get a lot of discomfort from it. I’m super vigilant of it, and I have it have it flushed by a district nurse once a week.

HOWEVER…it makes giving blood and administering chemo so much easier. Because it’s there permanently, there’s no poking around to get a vein every time, so premeds and chemo are less traumatic. Blood tests are drawn through it too, again, no poking around.

Although I absolutely loathe it, I’d still rather have that than go through my hand every week.

Thanks for that @TwoBigNoisyBoys useful info🌺

Yes thanks@TwoBigNoisyBoys.
Maybe not the best news🙂, but knowledge is power!
Wonder how I can nurture my veins over the next fortnight…
I hope it all does not make you feel too miserable, and hope rest of treatment is bearable.

Sorry, @TwoBigNoisyBoys

Thanks for welcome @MrsPnut @TopOfTheCliff @balkanscot

@Podgedodge I’ve had a port fitted, about 4 weeks ago. Surgical procedure under heavy sedation but not full anaesthetic - I remember nothing though! It’s been used for chemo twice and has been straightforward. I’ve got 16 sessions in total and I’m glad to have it. Was suggested from the start as my veins are v small. It’s a little tender still but mostly fully healed now - no bandage but still a little scabbing. I’ve been told I should be able to swim with it ( but I might double check that in view of comments here). It’s a little tender but that’s it.

I’m 53 and fairly thin with quite thin skin, so I’m conscious alright of not bumping it etc but it’s in a spot where that would be unlikely. Also I’ve been told the scar ultimately when it comes back out should be minimal.

Best of luck with your decision.

@twobignoisyboys I didn't experience the level of side effects you've had on the injections, but I was advised to take them in the evening (I went for 7pm) so that when they take effect it's while your body is resting at night. I had a few aches in my lower back but naproxen and paracetamol were enough to keep the pain to manageable levels. I did also struggle to stand for more than about 3 minutes in the week after chemo, but I didn't attribute that to the injections (though it could have been them).

It does sound as though you're having a rough time of it. I found EC to be ok but really struggled with my first docetaxel round and my oncologist reduced my dose by 20% for rounds 2 and 3 and it made a huge difference. Definitely speak to your oncologist and list all your side effects so they can adjust dosage as needed x

@LimboAgain You can swim with a port, they are meant for long term use. My doctor that fitted mine took one out of a patient who’d had it in for 32 years.

@Podgedodge I had a PICC line for my first chemo and it was fairly quick to insert and even quicker to remove but it needs weekly line care and you need to wear a limbo cover to shower. I had mine in for about 8 weeks but I was on weekly chemorads.

I had a port for this load of chemo and the same doctor fitted it, it took a bit longer and the recovery took a little longer but it was ok. My port however was difficult for the nurses to access and I ended up with my chemo leaking from it into my chest. It is such a rare occurrence that neither of my oncologists have ever seen it in 20 years of practice. They trained together but work in different hospitals and in different specialities.
I had to have my last 4 chemos through my right hand, I would only have one HCA cannulate me and I was warmed and fully hydrated each time.

After all that, I would recommend a port if you have a lot of chemos to go on a 3 weekly basis.

@TwoBigNoisyBoys I was one who used to take an antihistamine about 30 mins before the injections (which I loathed). Helped a bit.

@Podgedodge I asked for a port straight away and it went in day before second chemo (under sedation - easy). I can't imagine managing without it. It was a bit irritating but less intrusive than a picc - and it's under the skin so you can swim etc (to use it - the needle has to pierce the skin and I used to put some numbing emla cream on first). I've now just had it removed (after 16 months). Policy is to take them out rather than leave them 'just in case'.

If you get a power port you can have your scan dye put through it as well (I didn't get one of those sadly).

@balkanscot

Bone mets, not bobe, and brufen, NOT Bruges (been there once, it was quite nice).

Oh, the autocorrect!

Bruges 🤣🤣🤣

@MrsPnut , ah it was your story I was thinking of! How awful for you, that truly is the stuff of nightmares. I hope it can be successfully dealt with, it brings back just how dangerous all this stuff can be.
I am scheduled for 4 more chemo sessions , can’t remember type,(am in bed and too lazy to check), having had 4 EC.
Visiting oncologist next week, may ask his advice although he doesn’t seem really the advice type…
Maybe I hadn’t drunk enough in the previous couple of days, will try to up water/juice intake to see if that plumps my veins up a bit. It looks like it’s just that hand, my left, is getting tired, my right hand veins were popping happily on Wednesday! It may be slightly psychological as well, I absolutely hated the cannula with both births too, two c sections and the pain I remember most is that horrible needle in the back of my hand catching on everything and getting in the way of establishing breast feeding. Could also be an avoidance tactic, I suppose, I can focus on this relatively small issue and forget the other herd of elephants stomping through my life just now…
Wishing everyone light and peace tonight and hope storm Eunice is leaving you all alone.

Well I should have known better than to leave my Devon burrow! Had a lovely time with DS seeing a show in London but now I am stuck and not sure I can get home. The Museum we were booked for has closed so I guess we will check out of the hotel and go and camp out at Paddington and wait for a train. What an adventure!

I am trying to ignore some pain and swelling in my forearm that might be lymphoedema. Not looking!

Love to all. Keep trudging onward
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I've been reading everything, but can't type very well yet.

It'll be 4 days post surgery tomorrow.

This week has been very traumatic, that's all I can say at the moment MM I'm I'm

Hope you’re safe @TopOfTheCliff with a plan to get home
@MissSmiley sending vey best wishes.
Stay safe all.

Found great little hotel 150 yards from Paddington station and we are meeting DHs kids for supper so Eunice Bonus! It could be worse.
I’m having a better time than @MissSmiley that’s for sure. Sending love xx

Hi everyone, after all your lovely replies, I ended up in hospital this afternoon for blood tests as they were so concerned about my side effects. My consultant came to see me, she has said my red and white blood cells are shockingly low, so I am having two blood transfusions on Monday; they did suggest keeping me in until then but I was so upset i cried and asked to go home; she said yes, as long as I have complete rest and on the promise that if I get any more poorly I will go straight back. I have lots of mouth ulcers due to low white blood cells, so she prescribed me oral gel and stronger painkillers. She’s also lowering my chemo dose by 20% next time as I’m so ill, and is changing my injections to the single injection so hopefully I won’t go through this again. Home now, had a takeaway and will be having an early night! Oh, I forgot to say, the good news is she examined me and she can barely feel the lump anymore. So although it’s all been absolutely rubbish, that’s good news and I’m very happy about that.

@MissSmiley glad to hear your update but sorry it’s been a traumatic week for you.

Sending love to you all as always, and thank you again for all your messages x

@Acinonyx2 I've been chucked off the Kadcyla bus too now! My liver levels have not come down enough after several weeks so oncologist encouraged me to move over to Herceptin from now on. I had the first one today & was thrilled it was just an injection & no other meds.

@TopOfTheCliff I believe you had Herceptin & think I vaguely recall side effects of nose bleeds, bleeding gums & runny nose? Anything major? Also, how is your change to Exemestane going? Glad you have not been blown into the Thames down there in that London!

Hope your recovery is going well @MissSmiley. Keep resting up.

Sorry you are having a tough time with the chemo @TwoBigNoisyBoys. I had the single injection. Fingers crossed the transfusions do you some good. Don't lift a finger over the weekend!

@HauntedDishcloth it’s hard to sift out which drug caused what but Herceptin was quite benign for me. Crusty nose and sore bum and breathlessness on the stairs is what I remember. My heart was fine throughout.
The bone marrow injections gave me extreme chest and throat pain so I went to A and E thinking it was a heart attack but it wasn’t. Like @Acinonyx2 I took them at bedtime with a clarityn antihistamine. They were the worst bit of treatment.
Making progress home- now sitting on a random train heading West but to wrong place! It’s quite an adventure.
Love to all
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Oh and the Exemestane is way better for me than anastrozole but I am struggling to shed weight on it. That may be the cake intake though

@HauntedDishcloth how many did you do in the end (I only did 5 of 14)? I decided not to continue with herceptin which may sound like madness but my cough was uncontrollable at the time and I was fairly sure herceptin had given me a similar cough the first time around - and frankly, I just felt overwhelmingly done with the whole business. (Also had liver and blood problems.) My priority was to get my lungs calmed down ready for covid. (Must admit I have not been shielding though....).

A few weeks on with just a little post-covid cough I wonder if that was really the right decision but it's done and I'm relieved to be off treatment and in that quiet place between then and the uncertain future.

Hope you are still enjoying your adventure @TopOfTheCliff

@TwoBigNoisyBoys and @MissSmiley sorry to hear you are having a rubbish time of it. Hard to think about better times when you are in the thick of a really rubbish patch.

@MissSmiley I hope your recovery is going well.

@TwoBigNoisyBoys Sorry to hear about your blood cell count, mouth ulcers (I remember them well) and the rest -hopefully the blood transfusion on Monday will do the trick.

@TopOfTheCliff Your adventures are never-ending!

@HauntedDishcloth I am on Exemestane (13 months & counting) and so far it’s been fairly unremarkable. I was on Letrozole to begin with (since April 2018) but after the recurrence surgery in December 2020 I was put on Exemestane.

Slowly emerging from Covid stupor, day 7. Still testing positive, so will probably have to do the full 10 days in the self-isolation gulag. The worst for me was muscle ache (top of my legs) which, understandably, sent me into blind panic. As soon as I put Voltarol gel it gets better. So, hopefully not bones. Still feeling blah, but no fever, no cough. Sinus pain/headache, no sense of taste but smell intact. Very peculiar. I thought I was getting better on Wednesday but it hit me again on Thursday and Friday. Still feeling quite anxious about everything. Not heard anything about the CT reassurance scan I had almost 2 weeks ago, so will phone them next week.