June 2018 Chemo Starters

[cdc1811]

Sorry I’ve been quiet for a few days. Just catching up. Great news about the clear nodes Kip. Hope all goes well with radio and you’re finished by Christmas.
RedRose those nails really do look sore. I got a brief glimpse of my nails when the polish came off and my thumb nails look bizarre- as tho I’ve got another nail growing below. I swiftly re arnished them in the hope that this will prevent them breaking off.. Hope you don’t have any SEs on the Letrozole Sally, Amazing you worked through chemo!

I’ve been on a huge emotional roller coaster today. I finally decided to contact PALS regarding issues over care at my hospital, particularly with regards to failures over 8 my years of screening. I then received a phone call from someone at the hospitals governance department and was asked to give a detailed account of what has been going on. He was shocked by my experiences and said it was harrowing listening to what I’d been through. He apologised profusely. He was particularly concerned to hear that I’d been told I had nothing to worry about and had no increased risk of BC after my mammogram last June. It brought everything back and I ended up in bits reliving it all. He asked me to make a formal complaint. I’ve beem so reluctant as I don’t want to be seen as a trouble maker but he convinced me it was of utmost importance and reassured me that I didn’t need to feel that way. It’s important for the hospital to address the issues raise. He thinks it could be considered as a ‘serious incident’ which may affect the hospitals policies in the future. Waiting to hear what will happen next. My team should have been ‘transparent’ all along and I should have received an apology, I will hear tomorrow how the issues raised will be followed up with a timescale of when each part of the investigation should be completed. I feel emotionally drained but it was cathartic having someone listen to me, I have chemo tomorrow and feel nervous to go in but the chemo nurses have been invariably kind and they work in a different building so hopefully I’ll feel ok once I get ther. Still got to wait to see if this cycle can go ahead. My neuropathy is beginning to affect the soles of my feet as well as the toes. I can only describe it as feeling ‘fizzy’! . Just don’t want any more delays but need to be careful.

Sorry for not responding to everyone’s news. it’s been a tough few days but I do think of you all xxx

[reddi]

@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.

[Shi]

Hi kip meesh on oct17 thread that I was on has the knicker magnets, i’ll Ask her to pop onto this thread 😘😘reddi, glad you are feeling 💪💪💪about rads, keep hydrated and pace yourself and extra points for those who can get their club members up dancing while you wait (you’ll get a little club because you’ll have them more or less same time every day) 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💃🏻 Club Tropicana awaits 😁😁😁💕💕💕✨✨✨Shi xx

[Jacqs]

Hi Ladies,

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

[ktk]

Great news Kip😁

[reddi]

@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?

[reddi]

@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.)

[SallyG63]

I've heard of them but can you imagine if that fell out on the 8.01!!

Great that your nodes were clear. Onwards and upwards to rads.

[Kip]

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?

Kip

xx

[Linda Corinne]

Hi all,

There is a blog on the Lorraine website called Titty Gritty which is about someone who had a mastectomy and what not to say to someone who has cancer etc. It's quite funny too so may be of interest.

Much love,

Linda

[SallyG63]

Hi,

Georgie, anyone asks about your prognosis just tell them you'll live longer than them especially if they don't stop being so bloody nosey! Re the rads, as someone who has, at various times done a few sugeries, rads and chemo I'd say the rads was the easiest of the lot.

All you ladies with nail problems have my sympathy, they look really sore. Luckily for me my regime didn't affect my nails at all. I'm bad enough when I break or rip one low down on my finger

Saw my ONC today and have my letrozole to start tonight and he's doing the referral to Guys for the MonarchE trial and they will also do my Zometa infusions. He's also given me an open ended appointment to see him any time I feel the need so I just have to phone. Last couple of appointments I'd not seen him and the first thing he said was "you managed to keep most of your hair then" which hopefully means it looks better than I think it does. He asked if I managed to work all thru chemo as we'd discussed it my 1st appointment with him when I told him I'd only had chemo days off he said one word "amazing " which was a bit of a boost. Got him to check my scarring cos I seem to be getting stiffer and still can't lie comfortably or sleep on the side I had the mastectomy and node clearance. He said its fine but unfortunately I have a lot more numbness than they'd normally expect and at this stage it won't improve so I'm stuck with it.

[LJ]

Ooh they look painful. Is there a new nail growing under your thumb can you see?

LJ

[Linda Corinne]

Redrose mine were the same. 6 have come off so far and I think 2 more will. I used dark varnish and sun cream so very annoying. I stopped 3 weeks after last chemo. I cut off the bits hanging off as much as possible and am using nail strengthener now.
Linda

[Kip]

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. 

Kip

[RedRose]

[RedRose]

[RedRose]

[RedRose]

[RedRose]

Suggestions from chemo line. Just keep doing what your doing, keeping infection risk to minimium, but how they do not say. Will continue not to wash pots etc and change plasters daily after bath. Just bloody annoying banging them all the time 🙄🤬😖. Will upload some picture to show you what I mean xx

[LJ]

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. 

LJ

[Kip]

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!

[RedRose]

Did someone else say they were starting rads on 26th November too? Shades and cocktails 🍸 at the ready xx

[RedRose]

Hi Kip. Yeah they are actually coming off. My left hand thumb nail is holding on by a thread. Holding them all down with plasters atm. Didn’t know if to ring the line or just ask tomorrow when get zoledex injection. So awkward though, picking things up and banging them. How’s your seroma doing? I do hope it’s calming down and less uncomfortable for you. Hope all you ladies are coping the best you can, Georgie gee I can’t believe someone was that insensitive. Bless you. What treatment you have or don’t have is up to you and the same as your prognosis, it’s your business. I have had a few that want to know the ins and outs of megs ass but not through caring about me, you can tell with tone of voice and body language, they are noisy and tbh told them bare minimum. Driving myself stir crazy and having a few down days, but have things planned to actually enjoy rather than exist. Step daughters birthday 🎂 today, so circus 🎪 at the weekend if feel up to it and girly day with a friend tomorrow before hospital to look at a few dresses 👰🏼 Xx

[Kip]

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?  

Kip

xx

[RedRose]

Hi ladies, sorry been feeling 💩 again. Just going to catch up on what I have missed now. I hope you are all doing well? Any advice for nails separating from nail beds? Fingers are so sore and think I’m going to loose at least 3 of my finger nails if not s couple more. Took them all down as short as I can but they are still so tender and keep catching them xx

[Kip]

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!

Kip

xx

[Shi]

Georgie gee, from my personal experiences I found rads or as we called it the 😎😎😎Sunbed lounge a breeze, I didn’t wear a bra during or after rads, I wore loose fitting kaftan type thing round the house to let skin ‘air’ drank lots of water to keep hydrated, still rested when my body told me to and slapped lots and lots of cream on to preserve skin because you do start to sizzle like a bit of 🥓🥓🥓but nothing you can’t handle. Creams lots of us used were e45, Moogoo, Aveno, dr organically aloe Vera and tea tree gel, keep in fridge and one in handbag and slap it on. They will keep close eye on your skin during rads and look after you ❤️ They can play music while you are on the bed makes it feel more like a Sunbed 👍you should have 3 little dot tattoos so they can line you up on the bed each session, think James Bond and that lazer, think we called our machine dr bap Zappa 👍👍so it was part of the team treating us 😁😁 and as for Oct health at work, mine sat there and asked me ‘has it changed you’ she got a polite smile from me and a simple yes, but you do wonder don’t you 🙄 think they mean we’ll it just kind of comes out wrong. Kip glad you’ve phoned up, don’t get fobbed off if you are not happy, just turn up at your unit, they will fit you in, it gives peace of mind if nothing else ❤️❤️❤️Keep focused all of you, you are all doing amazing that’s you too Georgie gee 👭👭👭👭have you got your big meet up arranged yet? Get one sorted it gives you all something to look forward to, is oct17 💃🏻💃🏻🕺🕺💃🏻💃🏻🤪🤪🤪gang had weekend in London 👍👍well it called for nice treat after all treatments 👍👍💕💕✨✨✨Shi xx

[Kip]

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

xx

[Georgie Gee]

Hi Everyone, 

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..... 

Georgie xx

[Shi]

Hi kip, ring your unit and get that checked out, sounds like something meesh had post op, just get it checked, we are all guilty of going oh i’ll Leave it a day or so but we shouldn’t it’s all about keeping safe and your teams would rather see you every day if you want than to leave things ❤️❤️❤️Keep safe otherwise the honorary gold hot pants will need sending back kip and i’ll Have to tank drive and you don’t want that 🤣😂🤣😂🤣I’m like Cher from clueless 😁😁😁💕💕✨✨✨Shi xx

[Kip]

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?

[LJ]

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?

LJ

[Shi]

Reddi how are you darling? Hope you’ve been seen and got some fluconzole, keep safe 😘😘red rose have you selected any favours yet, it was lovely news you shared about the wedding. Georgie gee, don’t be a stranger and keep in touch on here, If I’m right there will be a lot of us wanting to keep in touch ❤️❤️Kip hope you’ve been pacing yourself and are doing ok. Keep 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻Ladies you are all amazing 💕💕💕✨✨✨Shi xx

[Kip]

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,

Kip

xx

[ktk]

Morning all! In spite of the weather yesterday I had a great day. I went on the last SWFFL fishing trip and caught a 2lb trout, which we had for tea!! Also had lunch out with the fishing club. The weather held while we fished but then the heavens opened!

All in all I have had a great week. Just about to leave for RT. I am leaving extra early to find somewhere to park.

Hope everyone is well this morning. How are the nails after T? I have two discoloured toenails but my fingers look ok I think. Still have black sparkly varnish on so a bit difficult to tell!! Kxxx

[Linda Corinne]

Hi Clare,

Yes I am so grateful to my surgeon. I am sending him a thankyou card to say how amazing he is and that he's the best from his no. 1 fan! I think he thinks I'm mad but he did say it's normal to be worried about results.
No follow ups are necessary at all.
I just need to decide if I want surgery on the other side and let him know. He said see how it looks in a bra. It looks lopsided in a sports bra which is comfy as my back has been hurting. I think I am not straightening up my back. Not sure if a padded bra will be better. I did try some old ones but need to try again under a top. He did say as my breasts are dense the radio will have less effect and radio can effect the size by up to 10%. We will see.
Glad you have decided how to proceed with surgery as I found that very stressful. The sooner it's all agreed the better from my experience altho I went back before the last chemo and had an us and mammogram.
All the best,
Linda

[cdc1811]

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?

Best Wishes

Clare xx

[Shi]

Reddi yes chemo hotline you need fluconzole tablets to clear this up, sorry for late response, I’ve only just managed to get a phone signal 💕💕✨✨Shi xx

[Linda Corinne]

Clare my surgeon said to keep in the picc line if possible. Still got to wait for fish results to see if HER2. Was tested before and was negative but when borderline best to double check so hoping it will be negative as asking if picc line can be removed tomorrow when its due to be flushed. You do have alot of problems like me (with the cannula).
The surgeon just said the size hadn't changed alot (42 mm and was 51 mm max on mri) but it wasn't as hard and that 85 to 90 % of cells were dead. He said it's unlikely for me to get a complete response due to type of tumour. I asked what would be expected - he said it's a good response. Not sure what that means re recurrence but will ask when get fish results. Was so nervous was just glad I got clear margins and that my wound was ok. Had some gunk (blood etc) that hardened when dressings were removed but it's gone now.

My surgery was going to be 4 weeks after chemo but due to my bloods it was 6 weeks 5 days after chemo.

Glad you are ok.

All the best,

Linda

[reddi]

@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.)  

[cdc1811]

What day are you getting your results Kip? Good you are going armed with questions. I’m also interested to hear how long you have to leave it between chemo and start of rads.

Linda did you keep your PIcC line in during surgery? Mine has made my life so much easier and I’d love it if I could get my anaesthetic administered through it before my next surgery. I had a hideous time with the cannula before my re-excision. It wasn’t inserted properly. I was trying to tell the anaesthetist but fell asleep before Air got the words out, When the nurse tried to administer my anti-biopics through it the next day it was absolutely agony. My hand remained sore, swollen and bruised for a month! I’ve heard that some hospitals take them out as they’re considered an infection risk but others allow you to keep them in,
LJ good to know about the final PICC line removal and the need for a warm compress if it gets stuck. Hope herceptin injection goes ok and you find out what hormone therapy you’ll be on. I’ve already been told I’ll have tamoxifen as I was pre-menopausal when diagnosed but this may change I suppose depending on what the Marsden think. I wonder if having a blood test to determine whether you’re menopausal is the norm? I think chemo has put me into menopause. Haven’t had a period for months. Will your rads be finished before Christmas? Such an early start for you each day with the journey. Shame there’s not somewhere in Swindon you could have it done. My sister has had great success with Slimming World. Once I’ve had my surgery I’ll need to get back into eating properly and exercising, Hopefully we can encourage each other with our efforts in the New Year.

Linda great news about the clear margins and news about the chemo. How did they work out the 9 out of 10 cancer cells being killed? Really hoping my chemo has got rid of the cancer cells speckling the tissue which were left behind after my re-excision.

I managed to get 7 hours sleep last night. Bliss! Bit of a dull day here but looking forward to catching up with my brother later. We’ll be celebrating the good news that the lesion on/under the skin on his face is benign! Best news I’ve heard in ages. My cousin is still waiting so see if she gets clear margins after her second re-excision.

Take care everyone xx

[cdc1811]

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!   

[reddi]

@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.  

[Kip]

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.  

Kip

Xx

[reddi]

@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).

[Kip]

Gosh Cdc sounds like you got a lot of answers and are making good decisions.  I woukd want to get all the surgery done now rather thsn hsve to face it at a later date.  If you need extra tummy fat therea plenty goimg spare here!

Sorry for short reply OH just brought me brekkie in bed

Kip

[cdc1811]

Thanks for your Candour Sally. Good to hear Service is getting back to normal in the bedroom department! Gives me hope.

Kip I’m sending hugs- the weight gain issue is something apI have to deal with but bizarrely I’ve got to get as much of a tummy as possible in order to have two reasonably sized reconstructed breasts so I’m eating like a horse!

Agh., I can’t keep my eyes open. I did want to say I had a very productive meeting with my original surgeon. Without a doubt I will be going for a double mastectomy with a tummynDIEP if this is possible. She says all through my treatment she has learnt to expect the unexpected. She was very suprised to find that once she’d removed the actual tumour and then did a re-excision there were cancer cells speckled throughout the tissue directly under my nipple. Also If I kept my breasts she would always worry about how they would screen me in the future as I’m mammographicallu occult. The team compared all the screening images U/S and MRI that they took this March and even knowing where the tumours were located absolutely nothing could be seen on my mammograms. My family history also suggests there is something going on specifically on my Mum’s Mum’s side even though I am not BRCa or PALB. Also having a tumour over 5cn is considered large and also bilateral status adds another element of uncertainty. I have micromets in Sentinal Node so even though this is considered node negative it does show so signs of spread however small. If I risked not having more surgery now I might end up needing more surgeries if I have problems in the future. I’d rather get it all out of the way now. I’m still considering the Marsden. I got a very polite letter from the consultant I saw. May be he was just having a very bad day! Turns out my sister’s friend knows the lead consultant there very well and has talked to her about my case. Waiting to see what she thinks. My surgeon said I need to go where I feel most comfortable and even she admitted the hospital I’d have the DIEP surgery has a lot of problems! I get the impression she doesn’t particularly like working there. I read up on the plastic surgeons and one seems to have only been doing the procedure for a year. I’d prefer someone more experienced. Still trying to get my head around the options.

I really do need to get so,e sleep so will write more tomorrow. Take care everyone xxx

[cdc1811]

So much to catch up on.  

Georgie Gee glad you’re feeling more reassured abou the rads.  I think the oncologists made a good Call with regards to ending chemo- the infections sounded horrendous and so dangerous.   Inreally don’t think you got off lightly at all!  All those hospital admissions!  Hopefully the rest of your treatment goes more smoothly.

Great you are home now. Take Care xx

[cdc1811]

https://www.thesun.co.uk/fabulous/7567919/breast-cancer-ruined-my-sex-life/

[cdc1811]

Hoping to reply to everyone tomorrow- had five appointments over the last 3 days and I’m feeling exhausted.
This was just shared by BCC on my Facebook feed so we’re obvuously not alone!