sal its great to see you are out and about again… and hopefully staying well.
i also lost weight on my first chemo epi and then put on with second one cmf… have upset tummy which keeps me awake at night and have to get up and eat something at like 4am… also feeling quite reflux and just generally a bit naff.
jayney like you i havent quite come out the otherside of the chemo… just started my antibiotics today for next 7 days cos bloods were only 1.05 when i got chemo and have a mini temp tonight of 37.3…
just feeling really teary and anxious and just not right… also found a new wee lumpy bit above my boob think maybe just a swollen node but my brain working overtime… seeing onc on monday anyway for post chemo review so will run it past him.
nicki glad to hear your getting through it hunni… how did it go with your onc?
caro… have you had your breathlessness checked again? your not anaemic again? sorry about your charcoal pies… think with my concentration span id most likely do the same thing… my OH was asking why the milk was in the kitchen cupboard tonight… i dont remember putting it there but im getting the blame for it.
helen they will often do a boob reduction or implant to otherside when they do your recon… some people have an Mx and recon at seprate times and some only get Mx in affected boob at first op and have to return for furtehr surgery… ask for a referral to doiscuss with your breast surgeon and plastic surgeon… wear a low cut top so that they know you actually like your boobs and not a big old wooly polo neck… like caro said they normally remove the nipple when doing a Mx.
Sal - thinkin of you tomoro - let us know how appt goes.
Lulu - hope you’re feelin a bit better and starting to turn the corner? Let us know how you get on today… big hug ((()))))
Caro - hope you’re feelin good - only one more to go honi! YIPEE
Had my last tab yesterday, good feelin, but been really tearful since last chemo, in fact more tearful than throughout the whole thing. Perhaps it has dawned on me what I’ve been through. Feelin okish, just very tired, as don’t sleep cos of night sweats! Like you Lulu, getting in a state re every pain, and twinge. Had what feels like bruised ribs since last chemo and painful shoulder, probably the chemo and the effects, but brain working overtime. Next hurdle for me is 18th Dec so hopefully will now get 3 good weeks to build my strength a little before op!
Hi to Nicki, Al, Reemie, Becky - you doin ok ladies???
xxx
PS What do you think of the barnet pic - it’s growing (slowly!!)
feeling dead tired after spending almost 5 hours at hosp… onc happy with me but thinks i may have urine infection so need bloods done and urine sample… veins werent playing ball but eventually got some blood.
then was referred up to breat unit cos of lumpy bit and doc i saw wants me to have a scan… thinks it prob just from where i had surgery in may but booked on for ultra sound on 11th so a bit more worrying.
onc also advised to increase omeprazole as thinks my tummy problems are causing indegestion and reflux to get worse and its causing me to still feel sick.
jayney loving your pic… im having major night sweats and hot flushes too much worse on the chemo than any i had on tamox… but really feel totally shattered and think im just to drop off now… also feeling more emotional and anxious now than i have felt at any time since starting chemo… but think its partly to do with lumpy bit and partly due to knowing that after rads theres no more treatment for triple neg cancer.
sally hope you appt goes well tomorrow and you get answers to all of your questions.
love and hugs from a very sleepy lulubelle xxxxxxxxxxxxxx
Oh Lulu hon, I really feel for you right now. I have an infection on my thumb where I bite the skin which isn’t healing. Also was really sore and itchy in the night in my lady parts(!) and discovered this morning (with the aid of a mirror) that I have a small cut next to one of my lips (sorry, really wasn’t sure how to word that!) and am worried that’s gonna get infected. Been putting off getting a bone scan for weeks now, so empathise with your scan concerns, although I can’t believe anything would have developed whilst you’ve been on chemo, so try not to worry too much. I’ve also started worrying lately that I’m not having rads like everyone else. Know I don’t need it because of mastectomy and no node involvement, but keep wondering if I should be having it to my chest wall area just in case?! As for breathlessness; nurse said it’s probably because my platelets are gradually being depleted from chemo. Hb was 11.5 last time, so not as low as when I had surgery. Hopefully it won’t go much lower with my last chemo…
Jayney, my ribs and shoulder are also feeling sore lately; when will it ever end??? Keep snapping at hubby cos always worried and in a bad mood
Sal, good luck tomorrow with your surgeon’s appt. Lucky you losing weight, I think you’re the only person that has!
caro i would get the sore bit on your lady bits checked… it could be the start of thrush or the cold sore virus (herpes) which doesnt always show up unless your run down but they can give you tablets for both of those that would help (anti-fungal for thrush and antivirals HSV). but also the chemo can make you a bit dry in that department so maybe even some lubrication in that general area would help.
dont use any perfumed soaps or anything and no ph 5.5 either as vaginal ph isnt 5.5 its about 4 so that can knock off your normal balance and cause bacterial vaginitis again easily treated with antibiotics.
i had also read somewhere about new research promoting rads for women who have mastectomy… will have a route around and see if i can find it… not sure if it was just relating to node positive women.
its weird how we all kinda feel worse now its come to an end than we did during the treatment.
caro id def go get your bone scan if you have sore ribs… iv had 2 bone scans and there isnt really anything too them but the chances of showing anything are minimal with no node involvement but would maybe give you some peace of mind.
and i have loads of broken skin around my nails too, i bite it a bit but they have gotten much worse on chemo and keep bleeding and are more tender than usual.
just gotta look forward to CP and we can all compare aches and pains and scars and 1 inch hair and wobbly bellies lol
i keep reading all your posts just dont always have oppertunity to post myself-kids been off ill and we have recently been to centre parcs (if anyone hasnt been you must go its fab). So sorry to hear about your lumpy bits lulu but i remember becky commenting that she had felt some and it was scar tissue i appreciate its still mega worrying but you have helped me feel better so many times with your fountain of knowledge directly or indirectly that all my thoughts are with you. God i cant wait to finish chemo its such a pain n the a**. next one thursday but i have so much to do upto xmas i have no time to be ill. And im skint-to much xmas prezzies for the kids from santa!!!
If anyone has sky please please please watch a flm which is on true movies at 8pm tonight called lpstick. Its about a 27yr old american woman who has a mastectomy and it is a wonderful film i laughed and cried all the way through. It was like someone had put all my thoughts into a movie.
I recieved my xmas prezzie yesterday, a letter informing me i am not bcra positive. Ever since i was diagnosed it was one of my biggest fears as my mum died of breast cancer when i was 8 and i felt everyone assumed i carried the gene which as i have a daughter scared the pants off me to think she may have had it passed to her. I would have chemo for the rest of m life if it protected my girl but i am clear so she wont have the gene- i got drunk!!! At last some fab news.
Helen, I just wanted to say I’m so happy you got such good news about not being BRCA positive - lovely to find that out before Christmas. Sending you lots of love.
Also, I shall be watching Lipstick tonight - I think I’ve seen it before but was probably before my DX so didn’t really mean that much at the time.
Gosh everyone is so busy at the moment so glad its now december another month ticked off on the rollercoaster.
Lulu saw your posting sending you loads of positive vibes, i feel quite lumpy around scars and was checked last week with onc got worse since i put weight on, keeping everything crossed for you.
Helen, thats brilliant news you must be so relieved, ive got to go through that next year and having two little girls myself and a mum who had BC 7 years ago but luckily is doing brillianlty now although is a very angry lady that im having to go through this too (but wasnt BRCA tested!!!) am quite nervous about it having it done.
Alison if you need any weight gain please have some of mine, I am now using the chemo as an excuse for eating everything and anything, i have put on over a stone and it keeps going up!!!
Had meeting with ONC last week and hes not happy about the amount of SE im having so is reducing chemo dose slightly little nervous about this and is also wanting me to take lorazapam for seven days but reducing it every day is anyone else doing this?? At least I wont remember next week now!!
Hi to all and hope christmas shopping is going well, so excited about christmas with the kids this year, advent calenders started today and already my eldest is saying is it christmas tommorow!! Oh to be 4 and 2 again!!
Hello all you ladies…so lovely to hear off you all !
Had my appt with consultant today…and for a change he wasnt so negative…not positive but not negative either. I have got to have 12 more lots of Herceptin…and also surgery and rads. He said the surgery isnt urgent so I get Christmas off (whoo hoo) and it will be done in New Year. Im seeing surgeon next Thurs to discuss, but their plan is take one boob off…have radiotherapy and then when Im over that have other boob off and recon at the same time…ha sounds easy when you say it like that! Oh and because of my decision to take ok boob off Ive got to see a clinical physcologist aswell…whatever ! Im just gonna concentrate on having a fab christmas with my girls and try to put all this rubbish to the back of my mind…as much as I can !!! Im gonna eat drink and be very merry !!
Jayeny am loving the regrowth !!! Its coming along well!! Mines a bit like yours too…quite fluffy though ha! Cant wait for my hair to be back! Im still getting night sweats and instead of being ecstatic that the chemo is over Im an emotional weepy wreck…who is paranoid at every twinge and ache…think this is to be expected…its something were gonna have to learn to live with…and we will !!! We’ve got through chemo we can get through anything !
Lulu…sending you tons of positive wishes and a big hug ((((( ))))). Everything else sounds like such a cliche…and I can imagine how worried you are…thinking of you lots xxx
Caro the last one is in sight !! I know what your saying about not having rads…they said they were going to through everything at me…and they are…and Im glad of that really cos I know that they have done everything possible to get rid and stay rid…however I had node involvement. Im sure if they had any concerns they would be offering your rads aswell…have you spoken to them about not having it?
Helen fantastic news about you not being BCRA positive!!! Can imagine how happy you must be! Ive got two little girls too…is this something you asked for cos noones mentioned it to me? Like Nicki Im scared to know if I have to be fair but maybe its something I should get checked? You sound very busy! Im feeling fab now…chemo over and nothing else to New Year. Im not going back to work till after Christmas either so I have plenty of time to have a bit of me time and get ready for Crimbo…I think after such a shitty 6 months Im gonna make the most of it!!!
Nicki you have suffered with the chemo havent you? Hope with these new changes to the chemo you dont suffer as much next time! Do whatever it takes to get you through it !! Thinking of you!
Al, Reemie, Becky and anyone else I may have forgotten…hope your all doing ok?
As least this is a busy and lovely time of the year…Im finding its taking my mind of all this rubbish…most of the time anyway!
helen so pleased to read your good news… im waiting on my results for the brca testing but will be another 2 or 3 months before i get results… they are very strict about testing up here and normally wouldnt test despite having 2 different bilateral cancers by age 40 and mum had bc too… but because id been in a research trial they agreed to do mine.
caro had a look at the Mx and rads research which only recommends use if tumour is over 2cm or in the nodes… so thats maybe why you werent offered it apparently it doesnt make any difference if you have a low risk of recurrence and they are doing research for people with intermediate risk as they dont know whether it makes a difference or not yet.
Thanks Lulu, I also trawled the net yesterday looking at the research and discovered the same thing. However, I did come across one paper that looked like it might say something different, but I could only access the abstract, so I’ve asked my hubby to see if he can get the full article from one of the consultant oncs at work.
Helen, good news about being brca negative. However, did the geneticist explain to you that the brca genes only account for 20% of all hereditary breast cancers, and that there are another 80% of genes they don’t even know about yet…? Sorry, don’t want to wee on your bonfire as it were, but maybe it’s something you’d want to question the geneticist about… I’m having genetic testing done in the new year to see if I need my ovaries out.
Sal, you’re right to just concentrate on having a great xmas; the other stuff will be waiting for you in the new year. Onc said I don’t need rads but will double-check with him again at our next meeting.
Been feeling quite down and grumpy and weepy last few days. Last night hubby sliced my ‘lymph node-reduced arm’ with a cheese knife (hopefully not on purpose?!) and I couldn’t stop crying for some reason. Oh well, think I’ll go and make some mulled wine and watch the Swan Pageant recorded from Sky3 (how sad is that). xxx
Helen, good news - chuffed for you. Isn’t it great when we get a bit of good news/positivity! Good news for you too Sal, no treatments/surgery til the New Year. You can chill out with your girls! Caro - did you make the mulled wine and sample it all or is there any left for hubby? I think as you near the end of the chemo the emotions are all over the place. When I had my last one, I was so thrilled and then I think it dawned on what I had just been through and was very weepy for a week, have now turned the corner again! It’s that rollercoaster again. Lulu - you are just the font of all knowledge - hope you are doin ok and not feelin too ropey. We are away for a couple of nights over the weekend (it’s my bday) and to have a bit of a relax away from home now chemo is over. So looking forward to that. Just want this op done and out of the way (very impatient). Went into work yesterday just to catch up with a few people and my boss gave me a huge bouquet of flowers and a bottle of champers for finishing my chemo - how sweet is that! What a nice bunch they are.
Hope the rest of you girlies are good - Al/Reemie/Becky are you doin ok?
thats lovely jayney… i got two lots of flowers one from my two best friends and one from my cousins to celebrate me finishing chemo too… enjoy your weekend away… are you going somehwhere nice? oh yeah and happy birthday too!
glad i have helped some of you out too.
caro sorry to hear your feeling quite emotional i have been a bit like that over the last few weeks… much more emotional than i have been during treatment… anxious and upset… but like jayney im starting to feel a bit better now.
caro i have an athens password so can access a lot of full text articles if you wanna send me a link i can see if i can access it… or if you know the authors and the title and journal i can do a search.
Thanks Lulu, that would be great. Here are the article details:
Nicholas P. Rowell, ‘Radiotherapy to the chest wall following mastectomy for node-negative breast cancer: A systematic review’
Journal of the European Society for Therapeutic Radiology and Oncology, Volume 91, Issue 1, Pages 23-32 (April 2009)
I think it’s quite an obscure journal, as even my hubby couldn’t access it, but would be grateful if you’d give it a go!
Jayney, I had it down in my diary that it’s your birthday on Monday, as it’s the same day as my last chemo. I hope you have a lovely birthday and a great time away with your man.
xxxxxxxxxxxxxxxxxxxxxxx
thanks for the birthday wishes lovely ladies! Caro won’t get on here now, so big hugz for Monday, will be thining of you. Hope the last one is a walk in the park and stress free for you. That light at the end of the tunnel is shining brighter now! Love to you all
xxxx
its an elsevier journal so i can access it through science direct… i will email a copy but will post the relevant points of it for others who may be interested
(locoregional relapse (LRR))
Reviewers’ conclusions…
Baseline risk of LRR is increased in the presence of lymphovascular
invasion, a grade 3 tumour, tumours greater than 2 cm or a
close resection margin and in patients who are pre-menopausal
or aged less than 50.
Patients without risk factors have a baseline risk of LRR of
approximately 5% or less, and those with only one risk factor have
a risk of approximately 10% or less. The risk of LRR rises to 15% or
more for those with two or more risk factors.
A meta-analysis of three randomised trials of radiotherapy following
mastectomy and axillary clearance shows an 83% reduction
in risk of LRR and a 16% improvement in survival.
Implications for practice…
For women with node-negative breast cancer and three or more
risk factors, chest wall radiotherapy should be recommended.
For women with two risk factors, chest wall radiotherapy
should be recommended or the patient considered for entry into
a clinical trial.
For women with one risk factor, chest wall radiotherapy should
only be considered as part of a clinical trial.
For women without risk factors, there is no indication for chest
wall radiotherapy.
so basically its saying if you have any 2 risk factors of lymphovascular invasion, a grade 3 tumour, tumours greater than 2 cm or a close resection margin and in patients who are pre-menopausal…
everybody in this thread would obv be in the pre-menopausal category but not sure if anything else specifically relates to you caro?
Thanks again Lulu, just read the article and have emailed you. Yes, I have two of those risk factors: age and grade 3 tumour Will be talking to my onc about it on Monday. Because the current guidelines suggest that I don’t need rads though, I’m guessing he won’t be easily swayed otherwise.
