New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Thanks all for the responses! Yes it seems different hospitals have different policies re: scanning. My CT scan showed a shadow on my liver so I had an ultrasound but thankfully it turned out to be nothing. mrs - I also have the 3 monthly ECGs - I think it’s because we’re on herceptin as that can affect heart function.
London - the cold cap didn’t work for me. I used it for my first 2 rounds of chemo but maybe 2 weeks after the second I lost most of my hair so just gave up on it. I never had thick hair to begin with. I now wear hats or a wig when out. I wear a yoga turban at yoga classes but feel like I get strange looks - I try and ignore them. I’m going to the gym now for a run on the treadmill and will wear a baseball cap stolen from my DD.
I’m on taxol (with herceptin and perjeta) now and the taxol has given me terrible mouth sores

Noodles. Yes your hospital does seem to have given you the whole gamut of scans!

I think with this you just have to trust your own team don’t you? I guess if they didn’t do a bone scan they didn’t think it necessary in my case.

Simm you are doing great if you can run on a treadmill and go to yoga classes. Sorry to hear about the sore mouth. I’ve been using a chlorohexidine mouthwash once a day since I was diagnosed. It’s alcohol free. They did first prescribe it at the hospital but you can just buy it as Sainsbury’s with the other mouthwashes so I just do that now. I don’t know whether that has helped but I seem to have avoided mouth issues. I know you are in Aus so sure there will be the same thing there. Ignore if you are already using something

Hello I’m 57, married and have DDs 25 and 22. I was diagnosed in October with cancer in both breasts. I had lumpectomies and sentinel lymph node removal about 7 weeks ago and I’m currently having radiotherapy and have started anastrazole.
Sorry to hear some of you are having such shitty times at the moment. I have everything crossed for you purple that you get some good news about a trial.

Thanks Mrs - the gym is a bit of an excuse to drop the girls off at crèche .

Yes I have a pink mouthwash to use 4 times a day which is mainly sodium bicarbonate- it helps but my mouth is still sore. I had no issues on my previous chemo it’s just since starting this one. I see my oncologist on Friday so will ask her.

Good luck with news on trial purple xx

Flippy I had a really persistent cough when I was first diagnosed - i was sure I had lung mets but thankfully my lungs were clear on the CT scan. Literally after my first chemo the cough completely disappeared and hasn’t come back since. I’m sure the chemo killed whatever was causing it xx

London

I decided against the cold cap as I didn’t want to extend the time at the hospital more than necessary in terms of chemo days. They were long enough anyway as I usually had to wait quite a long time after chemo to see the Oncologist.

I did the same as Noodles and shaved my hair off. It was more distressing and a pain waking up with it on the pillow and having to clean the shower of hair.

I bought some lovely scarves from a Belgian website called “Rosette La Vedette”. I did also have a wig but never got on with it and have been happier with scarves.

I found losing my hair was distressing at first but weirdly it did feel better once I’d shaved it off.

Xx

purple - so sorry to read your update, and that you’re still an inmate. What needs to change/improve for you to come home?

leslie I didn’t realise that Lonsurf went in cycles. Will you be stopping it completely, or are you having a treatment break?

Waves to tahiti - really hoping it’s good news for you tomorrow. I don’t know much about milestones in lymphoma treatment plans - what is hoped for right now? Stability, diminution or gone?

Morning all and hello to @littlebillie, hopefully you won't be here long!

How are you this morning @purpleunicorns

Morning all
Hello @littlebillie as the others have said, hope your not here long.
I'm be quick, as I'm herding DCs at the moment!
I cold capped for 3 rounds after cutting my hair short. I gave up as my hair went very thin on top and the nurses were worried my scalp would burn! My DH then shaved it off for me. It didn't completely fall out, I've been left with a layer of fuzz! I have a wig and numerous scarves and hats but to be honest I just walk around with my fuzzy head as I don't give a shit to put it bluntly!
As regards to MRI I'm neo whatever it is! I've had 4 one before treatment started then spaced out throughout my chemo to see if there's been any progress on shrinking the tumour. I had my last one yesterday and it hadn't shrunk up to then, so I'm not expecting anything exciting then I next see my oncologist!

I'm still waiting for the results of my urine test, they've had to send it off as there was too much blood in it. I might also need another blood transfusion so I'll probably be here for a couple of days at least

I never bothered with the cold cap and being bald isn't anywhere near as bad as you're expecting. And it's great not having to shave your legs!

Waves to all, i'm fluffy, 45 with one DD (12) dx November 2018 with TN stage 3 breast cancer, currently undergoing chemo (commenced Christmas eve).

Love and best wishes to those who are having it tough and the moment, i really must make a note of names as my memory is shocking at the moment so i can't recall who i want to send individual messages to by the time i come to reply to posts!

Fluffy what a great Christmas present!

Morning all! I’m Fuzzy, diagnosed with ER+, HER2+ Breast cancer in May 2018. 6 rounds of TCHP chemo, followed by mastectomy and implant reconstruction in Nov. No need for radiotherapy so I am currently on three weekly Herceptin injections, and have just started 2-5 years worth of tamoxifen. I have one DD who spends half her time with me, and half with her dad, a partner who spends half his time in the US, and a very lazy greyhound who spends 90% of her time on the sofa with her legs in the air!!

Name your comment about the toothbrush from last night made me properly guffaw! Thank you for that

Namechange i would have happily settled for socks, choccies but hey ho 😂 x

Hi Fuzzy. I am due to be having my first Herceptin injection tomorrow. What did you find the after effects were if any?

@Simmi1 and @MrsTraveller are you using Difflam ? This is often prescribed for chemo induced sore mouths .

One of the reasons I don't post v often is because I'm not good at following everyone's progress and I think it can be offputting for some who have tentatively joined to be drowned out in a chorus of name checks for the regulars .

Having said that huge sympathy for those in the special hell that is waiting for results .

And purple ,as Leslie said ,I wish I could do more that put words on a screen .Hope you're sprung soon .

Just popping back with a message re air pressure beds for Leslie ( who may be have the mental energy but not the physical strength to care ) and anyone else .

I'm sure these are the gold standard for preventing pressure sores but some people don't get on with them because they are not silent and can be difficult if you're already struggling to sleep .There are compromises out there in the form of overlay mattresses .

Afternoon Lacies, and thanks for all of your messages. BCN called this morning to say that they're booking scans and will see me in clinic with the results. Should all take place in the next couple of weeks. Ugh. As we all know, waiting is the pits. I've had scans since treatment for a few niggles, but I really do have the feeling of doom about these ones. Ugh ugh.

Purple so, sorry to read your update and I hope there's a trial for you. And you get home asap.

MrsT, I had herceptin, with chemo and then by itself as an injection in my thigh. It was a bit stingy by injection, how much depended on the nurse doing it - taking it out of the fridge in advance and injecting slowly seemed to help, but it's really not too bad at all. I'd usually get a red patch around the site for a few days. And a couple of bouts of dire rear each cycle. I had regular ultrasound heart scans as my LVEF appeared to drop, but the MUGA scans aren't as accurate and I didn't have any problems on the u/s ones. I see the cardiologist annually now, as there's a huge history of heart disease in my family.

London, I cold capped successfully, through 12 weekly rounds of taxol. If you visit the Paxman website, you'll find testimonials (including mine!) and advice. Happy to answer any questions.

Quick biog for me - dx Nov 16 with Grade 3, Stage 3 HER2+, ER+, PR+ multi focal bc. MX, node clearance and LD recon Jan 17, chemo, rads, herceptin, exemestane and zolodex (until I had oophorectomy in Aug this year - glad not to have zolodex any more!). I'm currently having a year of neratinib, an extended HER2 treatment after herceptin. More dire rear!! I'm in Scotland, I have one DS, 10, one DCat that we got when my active treatment finished. My DP died 3 years ago from renal cancer - anniversary coming up. I have two DSDs, they don't live with me but we're close.

Hi All, I'm Caz, 44, one DD aged 4. Dx with breast cancer Nov 18, small lump removed and sentinel node biopsy early Dec. Still getting some aches in my armpit and shoulder (usually after I lift something I probably shouldn't), the nausea from taking tamoxifen seems to have gone but I'm getting leg cramps and muscle weakness now! It's DH's turn at the hospital this week, nerve root injection in his neck, under GA probably as he gets muscle spasms so can't stay still. That's if I can get him to go tomorrow, he's having a major wobble about it today.

Can I ask those of you who've had radiotherapy how you felt afterwards? The reason I ask is that I've been thinking about applying for a job, the interview would be before my radiotherapy, and if I got it I could say it can't start for a month, but that would mean starting a new full time job straight after the radiotherapy. Probably a bad idea I know, but just wondered how other people have found it.

Caz I had pelvic radiotherapy so probably a bit different, but I felt fine. Slightly more tired than usual but I had very early morning appointments so may have been that. I worked throughout and didn’t need any time off. So based on my experience I’d go for the lovely new job but make sure you have nice relaxing weekends planned

Thanks Namechange, how many sessions did you have?

Caz tiredness and SEs from rads is cumulative. You might feel ok for the first week during treatment, but the SEs peak about 1-2 weeks after your last dose. I think it’s likely that you won’t be at your best straight after rads. I had very few rads SEs, but some people really suffer. A lot of the tiredness is caused by the body healing damaged tissue, which occurs after the rads have stopped.

Caz I've not had radiotherapy, so can't be of any help. But good luck if you do decide to apply :) and fingers crossed for your DH tomorrow.

Flippy I'm glad you've got a plan, but yuck to all the waiting. Hopefully you'll get scan dates as quickly as possible

peridito thank you. I think I'm getting used to the air mattress. It was a bit disruptive last night, but I still slept quite well. And now I find I don't really notice. It's much quieter than my oxygen machine!

Also sorry you feel that way about namechecking it isn't meant to exclude anyone. I try to make sure I reply to everyone who has posted since my last post, especially anyone new/not a regular, unless it's just a throwaway comment or a question that has already been answered by someone else (or on days when I'm too tired/muddled!). But lots of people only reply to a few or just post their own question/post. I hope nobody gets drowned out!

purple I hope they get your urine results back soon and top you up with another pint or two of blood. You must be completely fed up are you crocheting anything at the moment?

iVampire I'm now at a point where it is probably not worth extending my life further. So as the chemo doesn't seem to be improving my symptoms, I'll probably stop altogether. I'm pretty much bedbound now, apart from walking to the loo. I'm not in any pain, but I have nasty coughing fits where I can't breathe, and if I exert myself I end up very breathless. Yes it's in four week cycles. Five days of tablets each week for two weeks, then two weeks off.

Simmi I second Mrstraveller's recommendation of chlorhexidine mouthwash if you can get hold of some. I used to have really painful mouth ulcers every cycle then I started using it and I didn't get them at all. You have my sympathies. They're so painful!

London that must've taken you ages! There's so many old threads now. I'm glad you're finding them helpful

noodles thanks for the recommendation. I'll look that up. Currently watching a really naff Hallmark film on Netflix. I have the telly on constantly in the day as I don't like to be alone with my thoughts!

Welcome littlebillie I hope it turns out to be something harmless. In the meantime you will have lots of hands to hold here.

Waving to everyone else and hoping you're having a reasonable day

Caz I had 25 sessions, so every weekday for a month.

Mysillydog that’s interesting because I was in for surgery less than 2 weeks after I finished so I wonder if I had a side effects peak that was hidden by that IYSWIM. I probably did feel tired but then so would most people after have 2/3 of their liver chopped out so I forgot about the radiotherapy! Hmm I’m curious now (but not curious enough to go and ask for more!)