Hi Everyone, firstly let me just say I did feel a bit wary about posting my news yesterday as I am aware that some of you are still in the throws of chemo and all the other problems going on... please forgive me if it seemed crass but I'm rooting for you all, and will be waiting for you all in the rads department to compare tattoos!
CDC - good for you making a complaint.. without people like you making a stand these things will continue and it never ever should happen! I am sure it won't affect how they treat you at the hospital, if you had been listened to and treated correctly in the first place you wouldn't have had to make a complaint. I'm glad the chap on the phone was sympathetic and shocked to hear your story, just goes to prove that what has happened to you was horrendous! Be strong, you are doing this not only for yourself but for all those women out there who are facing the same challenges! I hadn't heard of Tamoxifen reducing the breast density but I will efinately mention my concerns it when I come to have a mammogram and will make a nuisance of myself until they do an U/S if I feel I need one!
CDC - hope chemo goes ok and the tingles don't get worse.
Knicker Magnets - hmmm, I'm not sure I believe they can do anything, but if I get to a point when I think I need one I might try it! I wonder if you would set of the alarms in an airport? Could be embarrassing. I had a massive hot flush last night and haven't even got the Tamoxifen yet!
Seroma - my nurse checked me over and it is going down so she didn't want to risk an infection by draining it, Just said to start exercising more to get the movement back before scar tissue sets in. I've got to get my arms up and behind my head for rads so must work on that.
On a different note - whilst with my Surgeon and nurse yesterday we were chatting about donating blood and my Surgeon confessed that she can't stand the sight of blood!!!! Crikey talk about the wrong profession...she said she donated blood and when she saw it she fainted!! The nurse then said she is needle phobic and can't ever donate blood as can't stand the thought of a needle! What a pair! Like to see them getting through chemo then!
take care all
@Shi Thanks! But ages til I actually start rads -- don't finish chemo til early Dec, then surgery, then recovery, then rads in Feb/Mar(?). But I like to plan ahead.
I’m from the September thread but was just looking at your comments below re menopause. I had a partial hysterectomy 9 years ago & started with menopausal symptoms a few years ago. I thought I was past that but having started chemo, the night sweats have come back with a vengeance. Until tonight, I had never heard of the magnet thing, but I have bought a cool pillow. It’s effectiveness is limited. It’s ok at the beginning of the night if you can stand the faint smell of rubber, but it does warm up during the night & gets a bit sticky. I’m always willing to try anything, but maybe you don’t need to spend too much on one - mine was from Boots by JML.
I did however try the tip of using 1/2 an effervescent vitamin c tablet before going to bed - just let it melt on your tongue. I didn’t have my first hot sweat till 4am which is a result for me. Also they’re great for helping with normal thrush, so results all round.
Best of luck with everything x
@RedRose Ouch. I hope that if any of your nails do come off, it's at least less painful, and that they grow back swiftly.
@Georgie Gee I'm taking note of Sally's retort, as I can't think of anything cleverer or more satisfying to say in response to such an unthinking question. I also enjoyed the Titty Gritty blog post that @Linda mentioned. (I guess one upside of having most of my friends and all of my family in the US: most of the time, my support network is weighing in by email, so they have the luxury of rereading before hitting send.)
How did your Herceptin injection go today? Are you feeling better about radiotherapy? I know I feel better about what lies ahead for me on the RT front after hearing from Shi and others.
@Sally You are amazing. I've been trying to work throughout, but docetaxel is kicking my arse, to use the native parlance. (Is "arse" okay to say on the forum? Or should I be asterisking it out? I truly don't know.) I am in awe that you only missed your chemo days! (And jealous!)
@Kip A p.s.: How's your (suspected) seroma? Is it going down?
@Kip Congratulations on your results! You must be thrilled. A bit startling to hear that chemotherapy can frazzle the lymph nodes, however... No one mentioned that this might happen before I started. Good luck with the radiotherapy planning -- it sounds like you will be done with RT just in time for Christmas, which is lovely. FYI, I've heard that your period might restart up to 12 months after finishing chemotherapy; after that point, it's very unlikely that it will restart again.
A magnet in your knickers???? The first thing I thought: another barricade to bedroom antics! A quick little bit of googling has me quite skeptical: https://www.healthline.com/health/menopause/magnets-for-menopause#does-it-actually-work
I have heard acupuncture can help with hot flushes, and meant to mention that side effect before my session on Tuesday at The Haven in London. I'll have to remember to mention it next time. (They offer a few sessions for free, so I'm trying it. Seems to help with my tingling hands and feet for a few days -- placebo effect, sensory distraction, acupuncture actually working? Who knows. Hot flushes would be a real test.)
Hi all, just thought I'd drop in to let you know I got the results of my ANC today and all the nodes were clear! Aparently I only had 4 nodes.. seems weird... but apparently the chemo frazzles them sometimes so thats all that was left. I now have a CT scan on Tuesday for planning the radiotherapy and then 3 weeks of radio to follow, starting about 2 weeks after. Also have to start Tamoxifen for 10 years!! Not looking forward to that but I'll do whatever it takes to beat this thing. Doctor said that I will in the menopause now and if I get any periods I have to let them know so that they can stop my ovaries from working. I also asked about future monitoring and she said I will be called for a mammogram on the 1 year anniversary of my first surgery (so May 2019) . I mentioned the fact that I was told my breast tissue was dense and shes said that Tamoxifen and chemo will have altered that but to mention it at mammogram and they may do an ultrasound!
The nurse mentioned hot sweats (as I am having some already) and has offered accupunture if they get too bad, also given leaflets for a magnet you wear in your knickers to help with menopause and a cool pillow thingy too! More bedtime reading for tonight.. anyone heard of these?
Ouch they look painful! I wonder if mine will do that as they have that ridge bit too. Not very useful tips from chemo unit though.
RedRose, I'm starting rads on 26th November too, busy sorting out various chauffeurs to take me each day so DH doesn't have to do it all, especially with it being such a rubbish journey.
Feel for you with your nails not being stable, must be so awkward. Hope your unit has some helpful suggestions for you.
Oh Red 🌹 your poor nails, must make things difficult. I havent got a date for rads yet am hoping tomorrow i may have some idea though. Enjoy the circus havent been to one in years and dress shopping .. very exciting! Enjoy it all and dont think of this crap for a while if you can!
Hi RedRose, sorry you've been feeling crappy again. Hopefully you are coming through it now? As for the nails, have they actually started lifting? Mine never lifted but they did feel sore, like that had been hit with a hammer or slammed in a door. I haven't lost any yet but have noticed since the end of chemo they are more brittle, so I have cut them very short and am still keeping nail polish on them to help. I have large ridges , especially on the thumb nails, but these seem to be growing out. I think i read somewhere on another thread that some ladies do lose nails but actually when they go they don't hurt and quickly grow back, just look a bit rubbish for a while. Have you tried rubbin almond oil into them? Someone suggested that to me. I do have a friend who is 2 and a bit years down the line in this nightmare and she said her nails were fine until about a year after chemo and then went a bit rubbish so I'm still wondering if mine will go at some point? Toenails seem ok tho. Perhaps ring the chemo line and ask for suggestions, they must come accross it. Otherwise, how are you doing?
Thanks Shi.... actually looking forward to a sunbed and a James Bond zapping... perhaps they should offer cocktails at the same time!! Perhaps they can play "Feeling Hot Hot Hot" whist they do mine!
Hi All, thanks for the replies regarding the seroma. I have called the BCN this morning and explained to her how it felt and she thinks is it a seroma but was reluctant to do anythign with it, she says they really like to give it time to reabsorb before draining it as each time they put a needle in they can introduce an infection. It does feel slightly smaller this morning and the drain wound is not weeping anymore so we agreed to leave things be until they seem me on Thursday where they will decide whether to drain it or not.. unless it gets really painful in the meantime. She said to keep a cushion or a rolled up pair of socks under my armpit and apply slight pressure to it and to only gently exercise that arm for 2 days, not to go mad! So I will see what happens.
Georgie Gee - I think that was a bit insensitve for somebody to ask you what your new prognosis is! People do come out with the most insensitive things sometimes don't they. Ignore them! I've never heard that rads can be worse than chemo. I think once you've been through chemo nothing can be that bad again. I do understand that its tiring and can cause soreness to the area, but at least you don't lose your hair, taste buds, feel sick, can't sleep..etc etc. I guess everyone reacts differently and you will always find someone who finds it terrible, but on the whole most people have said its tiring but much easier than chemo. Its a personal choice again though, and you have every right to not have it if thats how you feel.
Kip, definitely call tomorrow.... sounds like a seroma, but let your team check it out 😘
Shi, thanks for reminding me to keep in touch; now I've 'finished' all of the chemo they can safely give me, I'm suddenly having a planning meeting for radiotherapy next Monday.
I took a peek at a radiotherapy thread on here and I am quite reluctant to start it all, plus 2nd herceptin this Thursday. After my first herceptin I wasn't well enough to have docetaxol the next day. Had temp, nausea and diarrhoea. I'm so hoping it doesn't happen again. I feel like if I have one more side effect, I will explode!
Even with only 75% docetaxol, I've lost all my eyebrows now.
I was talking to an occupational health person today from work, and she told me that radiotherapy can be 'worse than chemotherapy'...... I haven't heard that anywhere else.
Then also a relative asked me over the weekend what my new 'prognosis' is, now I'm not having any more chemo. I haven't answered, because I found the question a bit insensitive - is that wrong of me? I just felt upset.....
Hi LJ i had and still do have sometimes the leg aches. Thats exactly how i felt like id walked miles and miles! In fact my calves ache quite a bit today too, ita SE of T i think! Fancy being post menopausal without knowing! Wow!! Let us know how the pills go.
I thijk j may have a seroma.. hard lump under arm whixh dowsnt really hurt as such more uncomfortable to put my arm down as it feels like an orange there. Any ideas?
Well, apparently I'm post menopausal!!!! I'm not sure when that happened, I must have missed it! Does kind of make the pregnancy test I had to have as part of my rads planning meeting redundant though! I think the oncologist was as surprised as me cos she's made a note on my file to say if I show any hint of starting a menstrual cycle I'm to get in touch at once! So I shall be starting on Anastrzole as soon as I get the prescription. Was expecting it to be waiting in the unit when I went for Herceptin jab yesterday but it wasn't. Shall phone the BCN line tomorrow. Most common SE seems to be joint pain, so what with that and the Herceptin I'm doomed!
Anyone experiencing sore leg muscles post their last T? Mine are like I've just done exercise for the first time in ages!
My fingernails look a bit yellow partway up and then have white ridges on the other half - presume that's the effect of two different drugs showing. Look to have healthy nail showing at the base so I'll just keep clipping them short and watch them improve!
Have a hair appointment on Thursday and I'm hoping to have some unsuitablly coloured streaks put through the fringe area where the hair is strongest - can't stand this unbroken grey much longer!
On the subject of hair - is anyone taking Biotene to help with regrowth?
Morning all, just had a good read through all your posts.
CDC - good news for your brother... what a relief, now just fingers crossed for clear margins for your cousin.
Reddi - I didn't realise your chemo hotline wasn't manned at the weekend, ours is 24hour. But definately speak to your GP and he can prescribe fluconozole or something else. Get on top fo the mouth before it gets on top of you... its was the worst SE I had I think.
KTK - my nails look horrible without nail varnish. they haven't fallen off but look discoloured and have large ridges on them, they are quite brittle too, so have cut them short and kept a pale pink nail varnish on just to make them look better. My toenails seem to be pretty much ok though. Actually my Tingle thumb is feeling a lot better now, probably 90% back to normal, still numb right at the end but much improved, so hopefully your toes will do the same CDC!
Linda - interesting how they could tell how much the chemo had worked. Thats amazing.
I get my results from the ANC on Thursday and starting to panic...I hate being back at the hospital but I need to know what happens next.. hopefully the RADs soon and the hormones.. I will be asking how they know which to give me. I am like you CDC, I was pre-menopause before this started but have only had 1 period since May so who knows whats happenign now. I am, however, having hot flushes still? Another question for the ONC on Thursday. I'll let you know what they say!
As for my wound.. its leaking a little bit, but I keep a dressing on it and it still feels so numb and swollen.. although it isn't too swollen. I think it feels like your face when you have had a tooth out and it feels like you face is 10 times bigger! I am trying to get the arm movement back, having some success but it is stiff and painful in places... when I put my arm down I feel like I have a ball under there, but there isn't. Definately found the masectomy so much easier than this op. Must remember its only 2 weeks ago and its early days, very impatient to feel back to normal in the arm department again.
Have a good day all,
Hope I’ll be allowed to keep PICC line in for surgery Linda
Great that you got clear margins and the wounds are ok now. Also that the surgeon thinks you had a good response to chemo. Hope you get good news with regards to HER2. Status.
How often will you need to go back to Sutton or will you have follow ups locally?
@cdc Thanks for the suggestion of daktarin. Just took a look, and the patient information advises consulting with a doctor before taking it if you are on docetaxel. So I think I need to wait.
It's interesting that your surgeons are okay with donor-tissue being subject to RT. My team is pushing me away from any immediate reconstruction if RT might be needed after the therapeutic surgery, and not just because of the issue of having to wait for RT until the wounds have healed. I am interested in the possibility of an LD miniflap after partial mastectomy the right breast -- a surgery that often is done after the pathology report is in, but before RT, so not exactly "immediate," but not delayed to a year after RT, which is the usual delayed reconstruction option. And from what I've read, because the LD is a pedicled flap, it is more robust for RT. But I'm guessing I'm going to get pushback on this when I raise it. I guess it's time for me to pursue a second opinion, and definitely to get a chance to talk to a plastic surgeon. (By chance, the assigned surgeon to me at the time of my referral to the breast clinic is not an oncoplastic surgeon; he is head of the department and of specialty surgeries, however.)
I used daktarin oral gel which I just got from my local pharmacy Robin. Might be worth a try whilst waiting for hotline to open.
i’ve made up my mind to proceed with a transfer to the Marsden, I’d made the decision before I had the strange consultation but I’m hoping once I’m actually in their system my experience will improve. I’ve heard nothing but praise from everyone I know who has had surgery there. Not looking forward to telling my BCN and original surgeon but I think I just need to get on with the switch ASAP. Obviously intend to complete my chemo where I am then crack on with surgery. I’ve been told all being well I can have surgery 4 months after I finish last chemo cycle. Kip/Robin with regards to radiotherapy and delayed reconstruction my team ar Barts were going to wait and see if they still felt I needed it after getting my final pathology report. I’ve been told they wouldn’t rule it out due to the size of my tumour on the right. Having radio is less of a problem after a DIEP using my own tissue. Radio and implants would be a different matter, it will be very interesting to see what the Marsden say.
ktk so pleased you got to go away with your OH. I’ve really benefited from a couple of days down at my Mum’s. I think we just need a break from hospital appointments and treatments!
@Kip Thanks for this. Sadly, it was wishful but bad memory on my part, thinking that the chemo hotline is staffed on the weekend. Asking the hospital to page the on-call oncologist feels like overkill for my current symptoms, as I have no fever. I'm now inclined to wait til 9am tomorrow (or til today's symptoms escalate). Bummers.
Hi Reddi, oh dear in my opinion and from experience i would call hotline today and then they can hopefully prescribe something for you. Its best to get on top of it quickly, i left mine a day and it wss horrendous and thats the week i ended up in hospital. I was given fluconozole to take one a day and also nistatiin for my tongue. I got this every chemo cycke afterwards to prevent it happening again.
@cdc I'll be interested to hear your and your surgeons' thoughts on immediate versus delayed reconstruction vis-a-vis potential radiotherapy. In any case, it sounds as though you're finally getting the information, guidance, and care you've been wanting and needing. Hope you manage to get some more rest today after the whirligig of appointments the past few days.
Ladies, in general: It seems that midway through cycle 6, I may be developing my first flirtation with oral thrush. Slight white film at back of throat, plus a fuzzy feeling there that is uncomfortable. I've used a long swab to check that it wipes off, and it does, so it seems almost certainly to be thrush and not leukoplakia. The tongue itself currently looks clear, but the tip of my tongue is sore, and eating anything with texture is massively uncomfortable (good-bye bread). I think this is Friday's legacy: I had a long conference call for work and didn't get a chance to brush my teeth after lunch, as I routinely do.
Question: Does this warrant a chemo hotline call? Or do I just go to the pharmacy to get something to treat it today, or wait til tomorrow to contact my chemo unit during normal hours? In other words, how quickly is this sucker going to envelop my mouth? Worth noting I'm in my WBC trough (day 10).