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June 2018 Chemo Starters

Member

Re: June 2018 Chemo Starters

Hi Georgie

I had a WLE with full node clearance on the 3 Sept. I developed a seroma and was told that it would resolve itself and they didn’t want to drain it because of the infection risk. The seroma grew to 9cm long, 7cm deep and 7cm wide. At this point they tried to drain it using ultrasound guidance. It was honestly the most painful thing I’ve ever experienced and they only managed to draw 75mls of fluid. Since then the seroma has completely resolved but the pressure forced open my scar which has still not closed. I think they always prefer to leave things alone to resolve naturally but surely you shouldn’t still have swelling five months along? I was told that gentle pressure would push the liquid out of the tissues, a rolled up sock or cushion under the arm was suggested but TBH after the attempt at drainage it was so painful I couldn’t stand anything touching it. As I said it’s all fine now just waiting for the scar to close so I can have more chemo.
I hope you get some relief soon.
Jacq x
Member

Re: June 2018 Chemo Starters

Kip, 

 

I found it interesting that your team had been similar to mine about the seroma business.....

I was told that I would likely have a seroma, but that I shouldn't worry, because the nurses or the surgeon would drain it after the surgery.  My particular surgeon does not even use a drain on anyone, but I was reassured when they told me they would drain anything that popped up.  

 

So I called and made an appointment for this with BC nurse when a swelling began, and she said she could not drain much, and to wait to see the surgeon, which I did, and then he said that it would disappear on its own over time, and that he did not want to introduce another opportunity for infection by draining it.  So I never had anything drained, and this was in June!   I think it may have reduced slightly, but I'm not sure it's going to go away completely.  The affected breast is now at least 2 cup sizes bigger than the other side!  My op was a full node clearance plus lumpectomy.  I know we are all different, but has anyone else had this? 

 

Georgie x 

 

 

 

Kip
Member

Re: June 2018 Chemo Starters

Oh thanks for the heads up on the exercises, makes sense I guess... mental note to self... do the exercises!

Hope you get some answers regarding the complaint.

Member

Re: June 2018 Chemo Starters

Hi,

if you've had a node clearance you have to do the exercises forever as the scarring tightens as it gets older.

Chased up my complaint again this morning. Waiting to hear back, not that they are going to get able to give me a satisfactory answer as there really are no excuses for the mistakes made.
Member

Re: June 2018 Chemo Starters

Kip glad you got good results. I am awaiting a HER2 test result although it was negative after the biopsy. I have my oncology appointment on the 26th so I guess it will drag on until January.
Anyway I just wanted to ask everyone how long to do the exercises for as I stopped after 2 weeks after my SLNB?
I have booked a hair appointment for later today to see if I need a trim to encourage my hair to grow back in a style. It's 9 weeks after chemo ended now but it grew back during the last 4 cycles. I saw a nice style on the local news yesterday as I quite like my hair short and peeps have said it looks nice short.
Every cloud and all that!
Take care,
Linda
Kip
Member

Re: June 2018 Chemo Starters

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

Kip

Member

Re: June 2018 Chemo Starters

If you do go the complaints route Cdc, don't expect quick answers. Mine, which is classed as a very serious incident, has been ongoing since January without me having received any sort of meaningful answers.
Member

Re: June 2018 Chemo Starters

Morning ladies,

So after 2 days of letrozole I was in bed knackered at 7.30 last night. I have stomach and back pain and I vomited all over myself without warning this morning when I was having a wee (all down my work clothes).

And to Cap it all, 3 weeks after my last chemo I work up to a pillow covered in hair. I'm losing far more hair now than I did all through chemo.

On the upside, it's Friday Smiley Happy
Member

Re: June 2018 Chemo Starters

Me again- Kip well done for bringing up the issue of your breast density. the tamoxifen will certainly reduce the density of your breast tissue, I was offered chemo-prevention last year due to high family risk (taking tamoxifen prophylactically in the hope it reduces the risk of Bc) I only found out recently via the Dense Breasts Matters website that tamoxifen also reduces the density of the tissue and therefore makes screening easier and also reduces your risk as there is less tissue to develop a tumour. If I’d been told this (and also the risks of having very dense breasts in the first place) I would almost certainly have taken up the offer.
Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

@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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

Great news Kip😁
Member

Re: June 2018 Chemo Starters

@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?

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Member

Re: June 2018 Chemo Starters

@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.)

Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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

Member

Re: June 2018 Chemo Starters

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
Member

Re: June 2018 Chemo Starters

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 Smiley Sad

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.