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June 2018 Chemo Starters

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

Member

Re: June 2018 Chemo Starters

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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

@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.)  

Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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!   

Member

Re: June 2018 Chemo Starters

@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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

Member

Re: June 2018 Chemo Starters

@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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

 

Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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

Member

Re: June 2018 Chemo Starters

Member

Re: June 2018 Chemo Starters

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!
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Yes I've been given some very large dressings to use if it leaks.

KTK - I am hoping to start Rads fairly soon, they were hoping to get them done before Christmas.   I guess that depends on how many I have (they have mentioned 3 weeks) and how long they take to get sorted.  I presume there are some kind of guidelines as to how long you should wait between chemo and rads?  Until I see ONC next week for results I won't know anything much.  Lots of questionsn at the ready. 

Kip

xx

Member

Re: June 2018 Chemo Starters

@Kip @ktk @LJ @Linda @Georgie Gee Hurrah to you all!

 

@Kip, for being relieved of your tiresome companion; @ktk, for a suite night away; @LJ, for start of rads (love the thoroughness of the NHS with these pregnancy tests!); @Linda, for 9 out of 10 cells eradicated; and @Georgie Gee, for pizza birthdays and the safe and sensible decision -- which sounded like what you wanted anyway -- to save yourself from another bout of sepsis, which is just far too risky.

 

Also, thank you, @Sally, for very good advice on sundry matters, including words of assurance about normal service in the bedroom department. post-chemo.

Member

Re: June 2018 Chemo Starters

After my 2nd surgery one of my drains was leaking g sp they took it put early. I used to just tape or put in my top a couple of absorbant dressing pads (you can buy a pack of 100 from the chemist ). That worked pretty well to absorb the leakage.
ktk
Member

Re: June 2018 Chemo Starters

Glad you are rid of your drain Kip. Hopefully you will heal quickly and move on. Will you start rads after Christmas ? Kx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Sounds like you had a lovely break KTK.   I am finally free of the drain.  The surgeon decided that it was 9 days post op and needed to go even though it was still draining.  It came out easily but the nurse is concerned it will leak a bit, so have an XXL plaster on it at the moment and have to watch out for swelling.  I han an awful bag to carry mine in this time, the strap was made from curtain heading tape ( the bit you put your curtain hooks in!!)...dreadful. Now back home with a nicely healing wound, just need to keep fingers crossed for the results next Thursday then hopefully moving on to Rads.

Have a good Friday night everyone...

Kip

xx

ktk
Member

Re: June 2018 Chemo Starters

Just had a lovely mini break with OH. After RT yesterday we went to stay at a hotel and enjoyed a tasting menu and wine flight! We went for a nice autumnal walk by the Yealm, the most exercise I have done for weeks!! We even got a room upgrade to a suite!! Then back for RT at lunchtime today!!!

Glad you had a niche time with your daughter Georgie. Sounds like the right decision re chemo.

I was given little cotton bags to carry my drains in by the BCN. She also gave me a heart shaped pillow to put under my arm. I was lucky as the drains were taken out after three days. One came out really easily but the other one got a bit stuck for a moment.

Love to all Kxxx
LJ
Member

Re: June 2018 Chemo Starters

Linda - sorry just seen your query about PICC line removal.  Mine was removed by the same people who'd been doing the dressing and flushes. I believe they are all sized (like small, medium etc) and each size is the same length, there's just a variance about how much is inside and how much outside. Anyway, because the girls knew how much my outside length was so they could tell for certain whether it was out or not. Just as an aside, mine 'stuck' slightly coming out but lying with my arm down and a warm compress soon shifted it - that's apparently quite common, so no cause for concern if it happens to you. 

 

LJ

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Great news Linda and LJ, both moving forward onto the next part of the journey.  Seems we all are in need of weight help, I blame the chemo brain... I kept forgetting the 10 biscuts I'd already eaten  Smiley Very Happy

I have dressing change today and possible removal of drain, although its still way over the 30ml they want, so perhaps I am stuck with it for a while longer.   Then results of ANC next week, dreading that one, but I guess as they are out whether they had cancer in or not shouldn't make a difference really?  Just want to get moving onto rads and hormones.

Kip

xx

LJ
Member

Re: June 2018 Chemo Starters

Not much slap and tickle going on here either, which made it all the more ironic when I had to have a pregnancy test yesterday as part of my radiotherapy planning meeting!

 

So RT is all set to start on 26 November. We don't have a unit in Swindon so I'm off to Oxford every day - it's only 35 miles, but because of roads and traffic it takes about 1hr 15mins for 9.30ish appointments. Factor in the time needed to find a parking space and you're looking at leaving about 7.30 if not before. Oh well. 

 

Have the next Herceptin injection on Sunday and should find a prescription waiting for me for whichever hormone therapy I'll be taking. (Had a blood test on Monday to determine menopausal status.)  Had hoped to have a bit of a break before starting, but oncologist wants me to start straight away. 

 

Had a long conversation with her about the role of weight loss and exercise as adjuvant treatments for BC. She did say that probably as oncologists they should probably do more to promote it. Anyway, she left me feeling I that was something I could control rather than having it done to me, so I'm trying to get into some sort of walking routine and am getting my head backs into Slimming World. I'd be up for some diet and exercise sharing/support too. Need to shift a stone to get me back to where I was pre chemo and then there's a couple of stone still to go after that!

 

Have good days ladies, may there be only tears of laughter. 

 

LJ

Member

Re: June 2018 Chemo Starters

I discussed proto therapy yesterday when I got my results etc. He said radiotherapy will be fine for me. The Marsden are getting a machine next year too. My right side was affected. Anyway just to let you know my good news I got clear margins due to my amazing surgeon. My response to chemo was good. It killed 9 out of 10 cancer cells so makes the last 6 months or so worthwhile!
I need to wait for another fish test but unlikely to be positive. I now need to wait for my oncology appointment on 4th december to duscuss radio and letrozole.
Awaiting a call re finally getting my picc line removed as it needs doing locally as they have all the mesurements. Has anyone had theirs removed as I go to the nurse rather than the hospital so altho she can do it on Monday I want to make sure it's done by someone who has all the measurements. It can snap so want to ensure it's all removed.
X
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Ladies, thanks for the kind words yesterday regarding weight etc.. would definately welcome some support in the New Year!   Bring it on.. for now just trying to rein in the eating...

Georgie Gee - so glad you managed to escape the hospital and got to have pizza with your daughter.. not what you planned but lovely nonetheless.  Regarding the stopping of chemo... I think you have to go with your ONC, it makes sense that given all you've been through with the last chemos, it is doing you more harm than good and the rads will blast at the area too.   Although we moan about the Oncologists sometimes, they are the experts and ultimatey want what is best.   That said, if you don't feel happy with that decision don't be frightened to say so.   Take care and rest up, and enjoy the fact that chemo is in the past, get your strength back up for the next part of the journey.

 

Reddi - I am now baldish, eyelash less and have a leaky drain to add to the sexual goddess look...oh I'm hot to trot now Smiley LOL

Kip

xx

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Re: June 2018 Chemo Starters

Hi Georgie,

Glad you have finally got home and enjoyed your pizza.

Re stopping the chemo and only having radiotherapy, that's all I had 1st time round. My cancer didn't come back so don't worry on that score. I got a separate different, unrelated cancer second time. I also had left sided radiotherapy and there was never really that much said about heart damage because it was angled rather than pointing straight at the heart area. I was told any damage would be minimal, to less than that of a light smoker if I remember rightly. 12 years on and I've never had any heart issues.
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Re: June 2018 Chemo Starters

Good evening everyone, 

 

Im sorry that it has taken me a day to get back to you all and report on my meeting with my oncologist.

 

I am just getting my head around it all, and have been catching up with rest today at home. 

 

When i I left the ward yesterday morning, I was surprised when the nurses said that they were not 100% sure that I was being discharged, but all seemed ok so I did go home after my onc appointment with my lovely daughter.  We ordered pizza as requested, and enjoyed our afternoon. 

 

As soon as we entered the consultation room, my oncologist waited for us to settle, and then said that she had made the decision to stop my chemotherapy altogether.  I was shocked, and then actually very relieved, as I was thinking that I would have to negotiate my options going forward.  She actually said that she felt that chemotherapy was actually more life threatening to me than the cancer, given my body's reaction.  I have had 3 bouts of sepsis after 3 FEC and 1 x 75% T.   I do not know whether my views will change further down the line, depending on what could happen in terms of recurrence or secondary ca. 

I will still have herceptin for a year, bone protection for 3 years and 3 weeks of radiotherapy. 

 

I had previously been quite worried about radiotherapy, but after the consultant explained more about the accuracy of the treatment, and measures taken to avoid heart damage (I had left sided BC), I am a bit more reassured.  With an incomplete chemo course, I am also more of the opinion that I need to have RT.  I have no hormone involvement either, so that means there is not anything like tamoxifen that they can throw at the cancer.  

 

I would be be interested to hear what other ladies think about this; to be honest, I feel that I have got away lightly compared to many of you.  My surgery has been completed, and I do not have to consider reconstruction or anything.  

 

It is so good to be home now, and I thank you all very much for your support and humour whilst I was in hospital. 

 

Bye for now

 

Georgie Gee xxx 

 

 

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Re: June 2018 Chemo Starters

Kip,

With with my first op I went to the shops with my drain in my coat pocket. Smiley Happy That was a good look.

I must be lucky in that my weight hasn't changed at all thru this bar the 1-2kg fluctuations that I've always had. My husband has had a good look at my scars, they don't bother him but I was already nipple-less since 2006 since the first cancer so it's just an extension of that really. And now that chemo has finished normal service has more or less resumed in the bedroom department.



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Re: June 2018 Chemo Starters

p.s. Huge guffaw here for "a bald head, no eye lashes and tingley fingers and toes doesn't exactly scream 'love goddess' does it!" Nor does my bedtime program of moisturizing hands and feet and then encasing them in cotton socks and gloves. Nor walls of support pillows. But goddesses we are, nonetheless.

 

I'm pretty sure my OH will be freaked out by the drains. I'm trying to gradually introduce the concept of them.

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Re: June 2018 Chemo Starters

@Kip These first days after the time change, as the earth closes up for the winter, are always hard for me. Not quite as hard as the depths of January, but I do find myself going into hibernation -- exercising less and eating more -- and that was when I wasn't going through cancer treatment. My last pre-chemo weigh-in wasn't good news. I know the doctors prefer weight gain to weight loss, and, as you say, in the scheme of things, it shouldn't matter. But I'm annoyed with myself, too. And I just got home from the shops where I picked up fixings for a nice, healthy barley-mushroom-kale stew -- and a salted caramel brownie. All my willpower is busy with other things. 

 

It sounds like your drain is pretty short, but maybe a little shoulder bag might be used to hold it under a cardigan? I wish I could send you one of my cute but usually useless knitting project bags; they might do the trick. Maybe one of your friends has something fit for purpose and can bring with?

 

Did someone earlier suggest transitioning this thread in the new year to an exercise and diet support forum? Or was that somewhere else? Wherever it was, I suspect I'll be wanting all sorts of support in the new year, as we figure out life post-chemo. It's such a long process, and has such big effects on the body, that it's not surprising that things don't return to "normal" shortly after the end of the final cycle. 💞to all.

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh ladies, seems we are all lacking in the bedroom department.  Not suprising really, a bald head, no eye lashes and tingley fingers and toes doesn't exactly scream "love goddess" does it!   Actually I am feeling  particullarly unattractive at the moment, hate how I look, mainly due to the weight gain. I'm off out tonight with some friends and have been trying to find something to wear in my wardrobe which (a) I can fit in to and actually do up and (b) covers up the drain!   Having virtually failed on all fronts I braved the scales and really depressed myself with my 2 stone weight gain... can't even do up any of my winter coats. I know in the scheme of things this shouldn't matter but I am so annoyed with myself for letting it get this way, although I know I haven't exactly been in the dieting exercising frame of mind lately.  In all honesty I keep saying I will address it when treatment is done and I can exercise properly again but I feel so fed up with not feeling like me.... grrr Note to self.. must step away from the biscuit tin....  Rant over... only self to blame... fruit bowl you and I must become friends again!

 

Reddi - sounds like you had a productive meeting... lots to mull over and fully understand why OH opted out.. my hubby is very much "English stiff upper lip" and would have died of embarrassment.

 

Kip

xx

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Re: June 2018 Chemo Starters

@Michelle21 Having loads?! Incredible, literally. But I guess we're all different.

 

Fun thing: my OH and I decided that he wouldn't come with me to meet with the surgeon yesterday primarily because I wanted to be straightforward with the surgeon about trying to retain one nipple for sexual/intimacy reasons. We agreed that my OH -- and possibly also my (male) surgeon -- would find that convo a tad awkward. I sensed my OH blanching, just considering it, even though he's perfectly fine chatting with me about the question. As an expat, I can't decide if it's being a boy or being British. Probably a combination.

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Re: June 2018 Chemo Starters

Thanks ladies for being open about your (lack of) intimacy with your OH’s. We’ve had little too since March but I read a book by a lady who had had BC and she and her partner seemed to be at it loads which left me feeling like it was just me, or us as OH hasn’t been interested either. Like you say chemo is not sexy, surgery is uncomfortable and having rads now isn’t putting us in the mood either. I was overjoyed to find out lack of sex drive is a SE of Tamoxifen too! It does make me wonder how we will ever get back to a ‘normal’ sex life. X
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Red rose 😘😘😘👍👍👍brilliant news everything booked for wedding 🌞🌞🌞🌞it’ll come round before you know it now ❤️❤️❤️❤️Kip, after my op, I got my oh over his fear of love iking at me by asking him to just check something out, it made him feel useful and like the protector again if that makes sense? Worked for us so thought I’d share with you 😘😘💕💕✨✨Shi xx
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Re: June 2018 Chemo Starters

@Kip The cryo stuff seemed to work really well in the first T cycle -- when I got Herceptin and Perjeta the day before, so docetaxel was given straight away when I got into the CDU. These past 2 cycles they haven't seemed to do much -- sitting in a chiller bag, even with an ice pack, for 8 hours before they are used means that aren't nearly so cold. (The first cycle the socks were so cold, they were barely bearable. Not so, the last 2 times.) The tingling is across all of my fingers and occasionally in the palm of my hands. I guess I underestimated this SE. Grrr. I hope your Tingle stays quiet after your armpits start to come back to normal.

 

@cdc Good work on becoming a Breast Density Matters ambassador! 🥂I know this is an issue about which you are passionate, and your story is compelling -- exactly what is needed to get some change in screening policy. 

 

@Georgie Gee Are you home??? I do hope so.

 

I haven't had surgery yet, but physical intimacy has been awol since my first biopsies, in large part because I was so sensitive in the breasts that it's strange to try to be intimate without touching them -- and my OH and I just think of the cancer then, so we avoid it. 😕(Def TMI, but can't find less specific words for this that aren't super confusing.) Plus, chemo isn't exactly sexy. But as I was thinking about surgery options -- and I will have options -- I realized I need to weigh long-haul considerations like this to help ensure I'm happy and recovering post-treatment in something like the way I'm imagining in my little future projections. Which reminds me that I need to book in with the therapist! (Once a New Yorker, always a New Yorker.)

 

Surgeon meeting report! 🔪

 

Meeting with the surgeon was very helpful, though I could tell *he* didn't understand why I wanted to meet with him now since he thought it was obvious that we'd wait til the post-chemo MRI to make the decision. Well, yes, but my case is complicated and I'm going to need more than a day or two to explore pros/cons and wrap my head around how the surgeries will interact with continuing treatment and reconstruction.

 

Surgeon's current plan is comforting, actually: the oncologist was wrong, and he is planning to spare the left nipple, even though the lesion is somewhat close to the areola. If the path report doesn't have clear margins, then the nipple will need to be removed in a re-excision. For the right breast, he estimates that about 1/3rd of the tissue is DCIS, with some probably much smaller area of IDC, though they cannot tell from any scans which is which. Without yet seeing the post-chemo MRI, he would suggest a mammoplasty partial mastectomy, possibly/probably taking the right nipple, even though there is no cancer visible in the MRI, since multiple ducts are involved. If he doesn't get clear margins, then we'd go with full mastectomy as the follow-up surgery rather than re-excision, since DCIS doesn't tend to respond to chemo and they would be cutting blindly. There was also an area of LCIS in one of the right breast biopsies, and LCIS has a great risk of recurrence by 20 years -- and in some cases, the secondary cancer is in the other breast. However, I can't imagine that there's much science proving that it's a secondary of the original LCIS, since genetic analysis of individual tumors isn't standard practice yet; probably just some general genetic disposition that isn't a mutation in BRCA1 or BRCA2, so I'm strongly leaning against a prophylactic mastectomy of the left breast.

 

I'll be spending the next 3-4 weeks weighing the pros and cons of going forward with mastectomy versus having a breast-conserving mammoplasty partial mastectomy on the right breast. There's just not much tissue to move around at the time of the initial surgery, so I might decide mastectomy, as my remaining tissue probably won't be breast-shaped after  the procedure; indeed, I thought that over 20-25% of tissue, the general rule was to do a mastectomy on smaller-breasted women. [Edited to correct info: definitely not a mammoplasty option for me. At 20-40% of tissue removed, it's technically a partial mastectomy. It seems that if the path report is clear, the breast might be reconstructed with a pedicled LD "miniflap" before RT; otherwise it's a free miniflap year after RT -- but with less tissue harvested from the donor site. I guess I need to start a surgery thread.]

 

I think I'll also see if anyone in the Someone Like Me program matches up with my current cup size (36B/34C) and had a similar decision -- particularly someone who took the mammoplasty option. (I don't think anyone in June chemo starters did, but let me know if I'm wrong!) 

Kip Community Champion
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Re: June 2018 Chemo Starters

CDC - sorry I wanted to add that I think intimacy is last on a lot of our lists... my husband is still not keen to see my scars, especially now I have a drain in tow!   I think thats something we need to work on once treatment is over and I can start to feel like a woman again.. still look in the mirror and don't recognise myself (facially or bodily)... In fact hubby has been sleeping down stairs since this last operation as he is scared he will pull out the drain by accident... I think on the whole he is very squeemish...and must say double bed to myself is rather nice but a big lonely.

 

Ooh.. just got the post and I've received my NHS survey to fill in...something to pass the time

xx

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

That is so interesting CDC and so impressive that you will get to speak out about this issue.  I am sure when I had my initial mamograme and then subsequent U/S and biopsy the doctor said that due to my age my breasts were dense and they couldn't see anything on the U/S.  Its one of the things I will be asking about as/when I get to a point of discussing future check ups.  

Sorry to hear the SEs are plaguing you again, but good it isnt the nausea.  Those steroids are devils aren't they and it does start to feel like this journey is never ending.  I am so fed up of the drain being in, still no sign of it leaving any time soon and its makign me feel like a patient too.   Im at the hospital tomorrow for the dressing check so hoping that can advise on whether this is normal to be draining so much still.  Just another thing to worry about.

 

Reddi -  Sounds like you had a nightare day waiting around and then the needle thing.. grrrr.  I had 2 lots of chemo using the vein under the thumb.. painful!!!  And I got a big bruise there too.  Is the ice on your hands helping with the neuropathy?  My tingle thumb is still a bit tingly but I think it is coming back to life slowly, I still get pins n needles going through my hand occasionaly though.   But now I have a numb armpit and arm to deal with so focusing on that sensation now.

 

KTK - good that the rads are going well, what are you using to moisturise?

 

Kip

xx

Member

Re: June 2018 Chemo Starters

OOh I forgot to say that after signing and commenting on a petition for an Inform Law (which would mean that people are told of their breast density and what this might mean with regards to an increased risk of BC and a need for further screening) I was contacted by Cheryl Cruwys the co-founder of Breast Density Matters. She has asked me to become a BDM ambassador and will be sharing my experience* at the biggest Cancer conference in the UK - Britain Against Cancer- being held on the 4th Dec at Westminster, She is also sharing my story with Craig Tracey MP as he has delivered briefings on the subject in the House of Commons and is a supporter of UK Breast Density Education Effort! If anyone else has a similar experience to share then let me know or check out the Breast Density Matters UK facebook page. The more we can get the information out there the better. Hopefully tumours will be picked up earlier and need less drastic treatment.

* For those that don't know already - I had yearly mammograms for 8 years due tohigh familial risk. The last one was less than a year before I felt a thickening of tissue on my breasts. After a private U/S I discovered that I have extremely dense tissue and as this shows up as white, any tumours are masked on mammogram as they also show up as white. Very dense tissue also raises the risk of BC. I should have been having MRIs but these are officially only available on the NHS to people who have the BRCA1 or 2 gene. The tumour on the left didnt even show up on U/S and the size of the one on the right was underestimated.
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Re: June 2018 Chemo Starters

Hi everyone

Sorry for being so quiet but Im also finding it hard to cope mentally and physically after my 3rd cycle of paclitaxel. I'm so sick of treatment and for the first time I truly feel like a cancer patient. I think I was also extremely unsettled by my appointment at the Marsden.
Waiting to hear if I can see a different consultant for their opinion.

Reddi So sorry to hear about your SEs, long waits and defensive and tetchy BCN. Since my assigned BCN moved to another department, I find her replacement less helpful and feel like I am 'bothering' her.
I also requested an appointment with my original surgeon which seemed to get her back up. Maybe I am just over sensitive and imagining things. How did your appointment go? I hope you have some answers and it will help you to make a decision. I have some nipple sensation remaining following my TM but not a lot. If I do have to have a mastectomy I've been told I will lose my nipples. I was sad about this for both my OH and my sake but to be blunt, intimacy has not really been on the radar recently!! Sorry if thats TMI.

Georgie Gee Hope you've finally escaped Casa NHS and are enjoying spending time with your daughter on her birthday.

ktk Good to hear you are finally feeling better four weeks post the dreaded T. Hope rads are going OK and the moisturising is helping. Im still waiting to hear if rads are still on the agenda for me.

I thought the weekly P would be a breeze in comparison to T but I was also warned of accumulative SEs. Because I've had a week's break the SEs seem to have come back with avengeance especially the downer coming off the IV steroids. My neuropathy seems somewhat better though. Seeing the oncologist tomorrow to make a decision about Fridays session.

RedRose - lovely news about the wedding. Enjoy the preparations. I've also never heard of the ball-bearings being used with regards to radiotherapy. Its interesting how each hospital does things differently. Hope your last chemo session has gone ok and you don't have too many side effects. I can sympathise with the cold body and hot head scenario. Menopausal symptoms are just the latest in chemo's lovely arsenal of SEs for me!

Kip Hope you can get rid of those ***** drains soon! I've got a strange taste in my mouth for the majority of time now. Wasn't expecting to get it on P. I am very glad that I have no nausea though although I've discovered that sometimes my hospital stops taxanes if they are causing too many problems and gives another 2 sessions of AC instead. I can sort of cope with the numb toes but the nausea was horrendous so I hope to carry on with the P for as long as possible.

Really very interesting to hear about the Proton therapy at the Rutherford. Obviously cost prohibitive for the majority. I wonder if it will eventually become standard treatment. I sometimes wonder if in years to come people will read about radio and chemotherapy and consider them barbaric!

My daughter is off to a Halloween party being organised by her Aunt so I think I'm going to go and have a rest while she's out. Feeling so fatigued. I have five hospital appointments over the next 3 days. Wish I could just sleep through them all and wake up when everything is finished.

Take care everyone xxx
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Re: June 2018 Chemo Starters

@ktk I wish I might be a candidate for therapeutic mammoplasty, but I don't think I am -- too small, I think. I'd take less sensation over no sensation if that were an option. A question to add to my list for the surgeon this afternoon. Thank you!