Will look into it but to be honest have so little hair on top and what I have is so fine and frail don't think it would take hair extensions. Am also loosing the hair on the sides of my head, front hairline is disappearing.....looking more and more like a chemo patient without my wig. 😒😒. Lol... Don't mind the wig (was a bit of a relief to put it back on!) but don't like it in the heat. Might be going to Malta to see my son in August -so I reckon I will have to resort to scarf wearing then!! Xxx
It was magnesium, calcium and vitamin D plus I think rose oil but can't find the post to check.
Spoke to Oncologist -seems I'm very very unlucky -Hair loss likely to be permenant. Prescribed me a wig. Gutted.
Will give you you a bell Sue towards end of week -then perhaps we can set something up for the four of us.
Hi Ange, Tamoxifen is for oestrogen positive too so may be worth asking the question? I am seeing GP this afternoon to ask about checking vit D levels as I have been told that will help as a supplement.I take cod liver oil and glucosamine with chondroitin and have tried tumeric but didn't notice difference so stopped that. Amanda was up for a meet and I have mentioned it to Daisy, yes feel free to ring whenever that is fine xx
Oh Sue that does sound painful. I was reading on a post someone who suffered like you took certain supplements -trying to remember what they were -really helped her! Will try to find it....
well am am going to try and see a dermatologist and get assessed. I have contacted my Oncologist but not heard back. He won't take me off it I doubt as am high risk re estrogen... Apparently it's much under reported and at the Moving Forward Course there was another lady like me -she's wearing a wig too.
Is is it just you and me then Sue re meeting up cos if so shall we arrange through our mobile phones -I've still got your number if your ok if I ring? Xx
Thanks Ange, knees do get quite sore and I am limited to how far I can walk but suppose just getting used to it now. Surgeon did suggest seeing ONC and asking to change medication, I would of thought someone would of suggested the same to you with hair loss.I was told originally I could have tamoxifen if letrozole didn't suit.
I am happy to set a date for meet whenever....any suggestions? xx
Hi Everyone -hope all is well with everyone?
Glad you enjoyed your hols Sue despite the weather -what a shame! Sorry to hear about how the Letrozole has acerbated the pain of arthritis -is there anything they can do? The pain must be exhausting. Does it affect your sleep too?
Thanks for the sympathy re my hair loss. Am gutted to be honest -it's so bad now that am looking at wigs again! Can't believe it -I wasn't prepared for it to be honest, kept thinking it will grow soon - spent a fortune on products! So shed a few tears over it -pathetic of me given how successful my treatment was!! But there's something about hair!! Definately don't want to do the scarves and hats!! , Ah well at least am well!! So wig shopping here I come. My breast care nurse says I should get myself referred through to whoever it is you see -not sure what good that would do -maybe I'll get a discount off the wig! Will keep the hair treatments up and see if they do any good in the longer run. At least I won't have to worry about the grey!! 😊😊 Every cloud has a silver lining!
Anyway just dine done the first week of the Moving Forward course -maybe it'll give me a much neededboot up the rear!!
Am am up for meeting up but if we are going to can we book a date as have quite a lot planned this summer? Anyone else want to meet up? Think if I'm right there's three/four of us?
Hugs to everyone xxxx
Hi ladies, not been on for few weeks so hope all are ok? Had a nice week in Corfu but 3 days bad weather cold and rain/storms!!
Ange sorry to hear about your hair how unlucky, I had read letrozole can cause hair loss but mine is okay and veryt thick wish I could give you some.
I am up for a meet and will fit in with whatever I can be free Thursday, Friday, Saturday and Sunday but can take a day off if it's the beginning of the week.
Amanda don't let work stress you it is not worth risking your health for, could you not look for something else part time? We have been through enough already, how did you get on with ONC and rib pain? I sometimes do get it, feels like they are bruised just under boob where I had rads but it comes and goes. My worse problem is bone pain in legs and joint stiffness I have arthritis in both knees anway but saw surgeon yesterday ans he said pain and stiffness is probably worse due to letrozole.
Anyway take care and love to all. Sue xx
just found out the cause of my ongoing scant hair, no eyebrows and sorry excuse for eyelashes.. It's the lovely Letrozole. Been to see a specialist hairdressers who's also a biochemist who has developed new cutting edge treatment and reckon he can get my hair growing -here's hoping, have checked him out and Cancerhair.couk say he's for real. Doubt I will get my lovely locks back in time for my sons wedding but hope at least there will be signs of improvement. By then at least.
Apparently up to 25% of women in endocrine treatment loose their hair -2.5% on Letrozle. And it's is very under reported. So am unlucky but fingers crossed the new treatment works....otherwise wigs here I come!
Hope everyone is well. Xxx
lovely to hear from you. Sorry to hear about the rib pain. Hope all is ok. Glad the mammogram was all clear (just got my results and mine was clear too😊) . Hope your appointment goes well today -let us know how you get on
And sounds like work is tough as well 😓 sending you a big hug!
ive been for a specialist hairdresser as am getting balder ....so fed up. People make comments at work -still no eyebrows or eyelashes so have to be sure to put plenty of make up on or I look like a chemo patient! Anyway am now being told it's the Letrozole causing alopecia. Occurs in 2.5% of people taking it. Typical! So another four years I wil be bald as a coot. Am now on some experimental treatment that's been devised to get round this problem as apparently Letrozole sends the hair follicles into hibernation. Otherwise might have to consider going back to a wig or a hair piece as its scant on top. Visions of it blowing off in the wind!!!
Anyway my hair is now dark.....bit of a shock -apparently dark hair makes your hair look thicker I always thought it was the other way round. You live and you learn!
Sounds like three/four of us fancies meeting up so far. Anyone else? How about a Sunday? Xxx
Hey Everyone -hope you're all enjoying the sunny weather Yay!! Hope everyone is ok -not heard for a while from some of you...hope all is well.....thinking about you all.
Good to hear Daisy that your Mum is finally on the mend. Goodness she has had a really hard road.....but you must be so relieved that she's turned that corner and is on her way back up. Hope she recovers quickly from the op -sounds like major one pso am guessing it will take her sometime.
Sue so glad you've had another fab hol and another in a weeks time! How on earth are you getting all these hols. Am so jealous!!
Am definately up for a meet up if it's at the weekend....so yes am game Sue. But am wondering how Dawn is as she's not long since her reconstruction op and don't know if she's well enough to travel yet. Wasn't sure therefore if we needed to book it a bit later on then originally talked about?
Am back at work full time now. Bit of a shock really as HR messed up so suddenly had to up my hours. So I was a bit panic struck when I first found out but have settled down....not finding it easy....lol.
Still get so flipping tired and am really missing my hair now.....wishing it would flipping grow! I've got as far as a sort of Elfin very short hair look but am so thin on top. Have finally coloured it which has helped a little, sort of mermaid colours -very trendy am told! The Saturday lad at the hairdressers came up to me and said -your hair looks amazing -am so jealous!! That from a 16-17yrs old!! Maybe there's hope for me yet!! Haha!! Xx
Hi girls, hope all doing well, Daisy how is your Mum hope she is recovering well. November thread has been very quiet so hope that means we are all getting on with life? I had a lovvely few days in Majorca last month with eldest daughter and her partner and off to Corfu next Sunday with friend. If the big C has taught me anything its live for today! I do hope we can get together again in the summer it will be lovely to catch up.
I am working 3 days until September and then it will be reviewed but hoping to retire (VR) next March and then get a little less stressful job but will miss my families. We ghave had a lovely day here with lots of sunshine and warmth so nice to sit out for a change. Ange hope work still going okay? Come on girls lets arrange a date and meet up for lunch.drinks again? Sue xx
Sorry Sue -am not sure what the five injections you are referring to? Are these ones that you have in your tummy -one per day -to get your body to produce more neutrophil cells? If so they can cause bbone pain for a few days. Codeine helps so make sure you have some in.
Re H jab -do you mean Herceptin? Don't normally get much se's from that. Some people feel a bit flu ey. I wasn't but I felt tired -but that could have been the chemo after effects!
Doxetaxel can cause a fair few symptoms such as dry mouth, dry eyes, dry skin, fatigue, constipation, weakness, sore mouth.. If you go on breastcancercare main website you should find a leaflet about it.
What symptoms are you experiencing? Xx
Oh wow Amanda -sounds fab the hair extensions. I would be tempted but am still somewhat bald on top 😕 My hair is very fine -much finer then before -plenty round the sides but the top reminds me of blokes in their forties!! Haha! (Hairdresser told me it is the effects of the lovely Letrozole -oh joy so could be like this for a few years yet then -Argggh!) So not sure if my hair would take extensions. Also having to keep my hair very light as darker colours makes it look even more thin.....lol. Am thinking of mermaid colouring my hair
Hi there Sue -chemo is tough without a doubt but you are getting there.... Hope the ses's abate soon. I found Doxetaxel tough but every ones is different -I met one lady who had worked throughout hers! Goodness knows how!
Anyone got any suggestions of where we could meet?
Hugs to everyone xxx
Morning ladies, I am on the Feb starte, had my FEC now just had my T Thursday and the injection can't spell it but begins with a H lol not feeling to good, can anyone let me know what side effects the had please just to put my mind at rest. All so did you feel ill having the 5 injections after chemo. I seem to feel bad ever time I have them.
hope all you ladies are doing well.
sue X X
Glad to hear you're on the road to recovery Dawn. My surgeon told me that if you are sporty like you you recover more quickly -if that's any consolation....still tough. Are you pleased so far with the reconstruction? Sending you big hugs...
I lost two two stone by following a low carb diet (ie no pasta, bread, potatoes, rice or added sugar) You're only meant to eat veg that grows above the ground and the more strict plans say no more than 40grams per day. Eat fruit after eating to lower insulin spike (apparently this triggers storage of fat round waist) & only 1-2 pieces per day. Have to say I've not been that strict on amounts of veg though can tell when I'm over my quota & am not rigid about not eating root veg but careful. Have to drink at least 2 litres of water per day. No calorie counting and no restriction on protein or dairy (handy for those of us on estrogen blockers!) Once a week include a little carb in your meal to fool the body to retrigger weight loss.
Having said all that went on hol at Easter and allowed my self to slide off and am still sugar detoxing & put on 5lbs! Just shows how easy it goes on!! 😓 Lol.....so reckon am on this for life with small amounts of carbs added in when I finally get down to the correct weight...... My GP says you can live happily long term on a low carb food plan.....so that seems to be my lot then...could be a lot lot worse!!
Hugs to to everyone. Do you think we should try to set up a date to meet up if anyone would like to. Think we should wait for Dawn to recover.....so what do people think? Any ideas where to meet up? Xxx
Sorry to hear about the breast changes Sue....hope the laser treatment helps & surgeon can sort out the imbalance.
Dawn, how are you doing? hope you're beginning to feel much better from the recon op?
Have had my MRI scan results and the gallbladder polyp turned out to be a stone embedded in the wall. Still have to have it out surgeon says but am so glad it's nothing more. Keyhole surgery usually so nothing major but am staving it off until I can talk to plastic surgeon re implications -know they don't like it if you've have surgery on the abdomen....lol.
Am working three days -not so easy as I'd hoped -but getting there slowly!! I do get tired & travelling wipes me out for some reason. Bit frustrated!! Don't know how you full time workers have managed it!!
On on a happy note -getting all geared up for my sons wedding in August -wedding invites have gone out 🙂
Thonking about out you all... Xxx
Hi Ladies hope you have all had a good weekend and better weather than he in the northwest, t shirts Friday and hailstones yesterday! Good to hear from you Daffodili but sorry to hear about your divorce something I may be doing too if I can be bothered. Dawn hope you are home and your boob is settling down, I see my surgeon in few weeks and am thinking about getting evened off a bit bad boob is smaller and firmer so feel bit lopsided. Got a bit of pitted oedema to sort first so having some low level laser treatment.
Amanda glad you are still enjoying getting away....I love it. Off to Majorca in 3 weeks then home for 3 weeks and going to Corfu for a week so looking forward to that.
Ange that is good news about heart meds lets hope you will soon be sorted and don't have any further problems.
Hope everyone else is keeping well and up for another meet in the summer. Take care all Sue xx
Glad you're on the road to recovery from reconstruction. Hope the boob settles and you feel better about it....and you decide it was all worth while after all.Am sure It must look and feel strange at first. Big, big but gentle hugs mindful of your new tender boob..
Am hoping to do recon next spring but a DIEP/Transflap. Big surgery so feeling a bit nervous -have to loose one more stone -now much slimmer having lost two stone. Anyway wishing you well.....nice beng waited on but you don't get much sleep in hospital....lol.
Daffodil am am so so sorry to hear about your divorce. Oh my goodness you have been through so much in the last year!! So tough. So it's not surprising that you are having to reduce your hours -bad enough coping with the big C& the after effects of treatment let alone divorce on top. Two biggies!! You take care and am thinking about you.
As for me -my heart meds have been lowered once more so feeling more optomistic that I will get off them in the end. Finding the cardiologist an ongoing pain but just sticking to my guns -going through BC has made me far more assertive and am finding I can calmly state what I want and need in a way I've never managed before! Yay!! Bit sad my end as a close friend of mine is rapidly dying from cancer -not BC and anothe from MS - am reminded once more how lucky we all have been so far. So the name of the game is to enjoy it whilst we have it!! So lets have a summer celebration!! Big hugs to you all xxxx
glad you are well enough to leave hospital but you must take care when you get home and not over do it. Hopefully your new boob will settle down when all the swelling dissipates. Being one with no boobs I fully understand why you wanted it done.
Rest up !
Big hugs x
Glad to see everyone is getting back to work or on with life. It is tough and has to be phased in slowly
I went back last October and have just reduced my hours to the minimum I can survive on financially for a year as I was just getting too tired.
I finished my herceptin in January and I have my last appointment with the oncologist in 3weeks. It will be a year next week since my last chemotherapy I have a woolly mop of uncontrollable brown hair I was dead straight blonde before so no one recognises me at work.
Im now trying not to fret about every ache which is hard I have got intermittent funny crawling sensations across my upper back which the breast care nurse has said not to worry about but it is difficult not to. I think I will have a long list to take to my appointment.
This year I have to tackle divorce etc still it's got to be better than last year.
Look how far we have all come.
Lovely to hear from you both, Sue & Amanda 😊😊 Holidays sound fab Amanda and I know Sue keeps sneaking a bit of time in the sun too!!
Thanks for the warning re work....been ok but yeah you're right the intentions soon fade. Am doing two and bit days spread over three if that makes sense. I do get tired but been better this weeks since the heart med dose was lowered -yeah. The way I'm gong Sue I can well believe three days is about right....
I ve done one scan for the gallbladder polyp so waiting for the results but now have to go for another scan on my neck as a lump has popped up there two. Flipping heck my body seems to be sprouting lumps!! So am still trying to exit hospital appointments -will get there one day!! At least the Onc signed me off until December!!
Have a think about what you fancy doing for out meet up in the summer. Be lovely to see everyone. Will warn you now my hair is much the same 😒 ....lol.
Hugs to everyone. Xxxx
Hi Ange good to hear from you was just thinking the same the other day ....been very quiet so hope all ok. Be careful back at work and don't let them push you too hard, I am managing 3 full days and am shattered when I get in. Been using A/L 2 days a week so still getting full salary but from April have cut to 3 days..... health must come first....no good having big bank balance and being too ill/tired to enjoy it.
YES I am definately up for another meet in the summer, we don't need an excuse but helping you celebrate your big 60 would be lovely. xx
We've all gone quiet on this thread.....Hope that means all is well with everyone?
Am getting my car back at the end of the week -shan't. recognise it! Can't wait am missing it's features and comfort!
Work is hotting up -two weeks in and suddenly the relief of pressures on others comes down to how quick I can get back up to speed. All this in my first staff meeting, made me feel awful -no pressure on me then girls eh? So the initial spiel about take your time, slow gentle extended return for the next 6 months seems to have suddenly disappeared! That was short lived...Hmmm. I need to have words...
Just written three letters to medics as being have 'fun' with the cardiologist who's latest faux pas is to report about an ECG I never had (don't know who's he's referring to but it doesn't sound too good!) -in his own letter I go from in one part having normal BP and heart rate etc... to the other part where am suffering with Tachycardia (heart rate well over 100!! & consequential heart damage). Not impressed naturally. Fortunately for me the reality is that my heart has recovered just need to get off the flipping drugs if the heart man can get his facts straight that is! Haha!!
I know it's only March girls but shall we plan something for the summer?......it'll be my 60th (cringe cringe) and am intending very long celebrations!! Well it's really a case of any old excuse really.... 😊😊 xxxx
OMG Ange as if you hadn't had enough, you were lucky you were not hurt. I am feeling much better thanks and today is a year since my last chemo! Two of my close friends are 60 this year and as I told them 60 is the new 50, we are as old as we feel.......90 in my case haha.
Hope everyone else is doing okay and enjoying themselves ....spring is on the way xx
Sue -Hope the sickness bug passes soon -there are so many horrid bugs around these days. Poor you....a bit of coddling is in order.
Works been ok so far. Am feeling very rusty after all this time off and also have a lot to catch up as loads of changes including staff!! So easing myself very gently in -though how long that'll last remains to be seen.
Made it finally down to see my Mum but in the process a juggernaut Lorry didn't see me and drove into me. Luckily nothing serious but he did hit the drivers door -garage says I need a new door, new wing mirror alongside a complete respray job down that side of the car. Figured I've got off light... 😊
It will be my 60th (OMG can't believe it) this summer and am just starting to think abut how I can celebrate it!! Amazing we have all come such a long way since those chemo uncertain months....so feel like a breath of fresh air thinking up fun antics. Suggestions welcomed!!
Hugs to everyone. Xxx
Hi Ange, yes monitoring would be a better option for you but they must know what needs to be done. How is work going, I have been off sick again today woke feeling very sick and few times in the night too so hope that isn't the start of things to come. Probably take tomorrow and on leave Friday anyway so hopefully fit again for Monday. xx
Yeah it's because of the polyp in gallbladder. Oncologist said need to see surgeon GP wasn't sure but has referred me bless her. They can't just remove the polyp but have to take gall bladder out -am not keen -prefer it if they would monitor it to see if it's growing -if not leave it alone! I get pain in my side like gallstones but it's periodic and not constant. So now my first week back at work involves three separate hospital appointments at different hospitals!! Lol.....but all I can say is thank heaven for the NHS!! Hugs xxx
Hi Ange, why the surgery is it the Polyp or have I missed something? Hope work is managable and doesn't tire you too much God Luck xx
Great news Daisy -your Mum is winning but what gruelling treatment she has had to and is going through. Wishing her well soon. Am hoping that 2016 turns into a much better year for you.
Saw my GP and she is referring me to surgeon but was hopeful that they might not operate. Am relieved but a little confused by the conflicting opinions from the docs.
Enjoying my last few days off before I start back -It's just fab to feel well -am relishing that glorious feeling as its just wonderful ....even my hair is growing now -yay though eyebrows and underarms is still missing -not that I miss the latter!! Haha!! Am going for my second hair trim this week. Am hoping work won't knock me of my perch so to speak!!!
oh by the way -don't know if you remember the friend that I lost during treatment -well we are back in touch now -feels good 😊😊
Hope all is well with e everyone,
Big hugs. Xxxx
Hi all, hope you are enjoying your weekend ....very wet and miserable here!. Had a lovely few days in sunny Spain last week which I really enjoyed but back to reality now:-(
Glad to hear your good news Ange it is such a relief to be told cancer free, hope polyp op goes smoothly when are you having it done? You are doing well with walking I am still struggling with my knackered knees so cannot walk very far but try to swim half a mile three times a week. Well done on losing weight too I could do with shedding at least 2 but that is also a struggle.
Amanda and Juls well done to you two with excersise you are doing great. Caroline don't know how you manage to work so many hours that will be keeping you fit I am still keeping to 3 days using leave but have asked for 3 days from April on reduced hours for six months.
Dawn how are you doing not heard from you for a while?
Daisy's mum is still having problems she had a problem with an artery following axilla clearance but the good news is only 2 nodes contained cancer cells so think they are deciding about radiotherapy to axilla now....it has been a long haul for her.
Love to all Sue xx
Thanks Amanda -Oooh yes the best pressie possible.....it was sometime later when it dawned on me that I could well be heading for another op such was my delight that even that didn't phase me!! 😊😊 Hadn't quite clocked how much it was on my mind until the Onc gave me the all clear....talk abut dancing on air!!
Oh wow you are doing well on the exercise bike. Am at about 8000 steps using a pedometer which equates to about and hour and a bits walking -try to do it most days and starting to include more hills of which there are numerous round my way!! Good luck with the running!
My son gets married in August 😊😊😊 though I gather little has been planned so far though venue and food is sorted 😊😊 Have lost a stone in weight and planning a further stone loss if surgeon says it's ok.
Big hugs to everyone, hope everyone is OK & getting plenty of opportunities to celebrate life and have fun!! xxxx
just thought I'd let you know have had my scan and got the results all on the same day!! My Onc reported there is no cancer -fantastic! However I have got to see a surgeon as there is a polyp that they want out which means my gall bladder has to go. Keyhole surgery with 2-3week recovery so small fry girls!! Am so relieved....
so don't have to go back to see Onc now until December -yay!!
Good luck with your check up in Feb, Jules, am not surprised it brings it all back.
Big hugs to everyone!! Xx
Hi all, good to hear everyone getting back to some kind of normality. Ive been back at work 7 months now & apart from still having grey hair it feels such a long time ago we went thru so much sh*t. having a check up in feb is the only thing that brings it back !
I hope all the scares you have are unfounded. I take the spray version of vitamin d, have for nearly a year now but only cos we dont see much of that big yellow thing thats meant to be in the sky!!
Take care all, julsx
Oh it so good to hear everybodies good news 😊😊😊 Happy happy days girls...
Know what you mean about being out of control Amanda.....and the need for fun, fun ,fun!! Yep am with you on that!! I seem to have had a bit of a spending spree in the sales -it's actually been fun to get out there and go shopping! Before was dragging myself round. Reigning myself in now as my sons wedding's in the summer and will have costs to contribute to. But the freedom to do things is just AMAZING!! Am doing 8000 steps now!
Make sure you add K2 with vitamin D3 -this makes it goes to your bones and not organs -am hoping it will help to off set the inevitable bone deterioration thanks to the lovely Letrozole. I read you should take 100mg for every 10,000iu of D3.
Caz you are amazing -am not surprised your feeling the fatigue! But good for you!! So sorry to hear about the heart. Left ventricle damage is what happened to me. They maxed me out on Ramipril and beta blockers but got me sorted-stuck a 48hr ECG on me over the weekend -I joked that maybe I skip dating -bit of a passion killer!! But the stickers left me with big sore welts which have gone scabby now -my skin remains super sensitive these days..lol Hope you feel better soon. You've had a cart load to deal with!!
Hope Jules & Dawn you both fine and having lots of fun!!
Hope Daisy's mum is on the mend from her op.
Big hugs to everyone!! xxx