Breast Cancer Now Forum

Excema is a nuisance isn't is? I don't know if the Tamoxifen has made it worse - some days I think it must do! I used to be able to control it well by using Epaderm and occasionally topped that up with Eumovate but lately my lower legs where I rarely used to get excema have been itchy to the point I have scratched until it has almost bled. Anti-histamines have helped too when it has been unbearable but I think I'll mention it next time I see a doctor - whether it be my GP or the oncologist not sure whose next on the appointments diary! lol! Strangely enough the coconut based Body Shop Body butter has been quite good - I use it for my heels and feet for dry cracked skin and found that the excema I had on the palms of my hands seemed to heal up too. Funny how some things suddenly seem to work when you're not looking for them. I hope you can find some relief soon - I know only too well how the insane itching can drive you nuts!! ... View more

I found the Defiant Nail oil a very good substitute and it is available from the Live well with cancer website. ... View more

Have you asked if you can have another wig?   The reason I ask is that one of the ladies in our monthly group went for another one after her original wig went matted and a bit tatty in the way you are describing. When you think about it they do get a lot of wear and tear no matter well you look after them and to be fair you would replace an item of clothing without thinking about it.   Swampy ... View more

Hi Evie-S From what I remember of having the drains removed I was told to breathe in deeply and when I breathed out the drain was removed - barely felt a thing! Hopefully it will just as easy for you too!!   Swampy ... View more

I used the Paxman cold cap and considered it was quite successful for me. You will still lose some hair even though using the cold cap - I lost about 30-40% of my hair and in places it went so thin it was almost bald but a bit of strategic combing or parting helped lol. Other people had even better success and others it didn't work at all - so fingers crossed all goes well for you. I wear hearing aids and was more bothered about my hair not covering them which is why I was determined to try everything possible to keep it. I still had a wig which I wore a few times and I was given an appointment at my local hospital to see the wig/prosthetics team. Most areas give you a voucher or wig free on the NHS so do ask your BCN or oncologist for details. I had collar length hair but had it cut shorter in a similar style to my wig. In fact I liked the wig style so much that now my hair is growing - with my hairdressers' help I'm hoping to grow and cut it to get a similar style.   Swampy       ... View more

Hi everyone I'm having a wobble at the moment. Does anyone know the criteria for having a CT scan? Some ladies I know have had CT scans to check for spread and apparently it is the standard for Grade 3 cancers. Mine came back at Grade 3 after pathology of my operation and was also in one of the sentinel nodes but I don't know if I should be asking if I should be having one now that all treatment has been finished. I'm due to see the oncologist next week for my six week follow up and I'm jotting down all my side effects and questions to ask for when I see him   Swampy ... View more

Hi Duchess69 - Probably too late for your first treatment but better late than never!!   I'm from the October threads and had the FEC-T chemo treatment and I cold capped. It is well worth trying the cold cap and if you can persevere with it - it really is worth it. I probably lost 30-40% of my hair but in general apart from one or two very thin almost bald patches I coped with the odd strategic comb over or moved my parting lol!! I did have my hair cut shorter and then when I got my wig (just in case!) my hairdresser cut my hair in a similar style so there wouldn't be a dramatic difference should I have needed to wear it but in the end only wore it a couple of times. Some suggestions - get yourself a stretchy headband for your forehead while cold capping, take a couple of a paracetemol an hour or so before your treatment, wear a warm cardi if you should feel the cold, drink plenty of hot drinks and listen to some music or do a difficult sudoku puzzle while you cool down and you will acclimatize and get used to it very quickly.  Painting your nails a dark colour is suggested for when you're on the T part of the treatment and if you can - apply Onicolife Nail oil several times a day to your nails. I did this for my hands and apart from a few ridges on my nails they have coped well. I neglected my toe nails and the difference is very obvious - and they will eventually go but it's a short term thing so I'll get over it and they will grow again.  We all have the wobbles as it's quite a scary thing to have chemo - but in the end for me after a sleepless night before my first treatment - I was thinking - there's nothing to it!! Especially if you have a PICC line or similar to help things along.  Afterwards just go with the flow - take the meds they give you and if you need more or alternatives then ask for them - there is no reason for anyone to feel poorly - we are all different and what works for one won't necessarily work for another. Good luck - you'll get through it - we all do -  they don't call us pink warriors for nothing!!    Swampy   ... View more

Hi Evie-S It's natural to be concerned about any operation but try not to overthink it - past experience has often shown me that the reality of a situation is often far less worse than my mind had made it out to be. Not easy to do I know - but that mindset has got me through an awful lot of the stuff that I thought I would never be able to cope with. Chemo was my one horror in all the treatment that I have had to face - but in reality sat there with a drip going into my PICC line was really quite an anti-climax and I thought to myself - silly mare!!    I'm at the end of my treatment now and am just building up my strength and stamina for a phased return to work in a few weeks so all is well - a minor operation or two still to do in the future but we'll deal with that then!! But if my experience of the nodes helps you in any way albeit to ask a few more questions of the surgeon then good!! They (the surgeons) need to take account of what they say to people - not just fling out alternatives of treatment without discussing things!!    Swampy ... View more

Hi Fiddlercrab   I had a positive cancer result from one of the two sentinel nodes that was removed. However ultrasound of the axilla 'looked' normal so my MDT decided that chemo would sort what (if anything) was in the nodes as it's a whole body treatment. Then radiotherapy to the boob and the axilla should reinforce it. I was informed that it is still possible to have lymphoedema even after radiotherapy. Research results have shown that there is little difference in the outcome whichever route you opt for which I'm alright with. I really didn't want another operation 'cos no matter what anti-emetics they give me I can still technicolour yawn for britain after an anaesthetic!!   Swampy ... View more

Hi Percivn   A PICC line will be so much easier for you. I had a line inserted almost as soon as I knew I would be having chemo because my right arm is a right tightwad when it comes to giving blood through my veins.  Go for it !! you won't believe the difference it can make.   Swampy   ... View more

You may find that lubricating eyedrops may help to soothe your eyes. I used Hypromelios 0.3% and it made a huge difference when I was on Chemo. I still looked like a panda and even now struggle in windy conditions but it does get better.   Swampy ... View more

I was advised not to use my steroid cream (Excema sufferer!) and for a while used only E45 Intense Recovery cream and changed to Hydrogel when the skin began to break down. At one point my scar was actually begining to open up which caused a little worry for a few days as it was the last part to actually heal up after months of treatment with district nurses and the hospital. But it all came right in the end.  As for feeling hot and a bit sore - I don't care what the radiologists say about it being too soon after only one or two treatments - it does get hot and sore and they should try it before coming out with stuff like that!! We get sunburn after an hour in the sun so what's different about RT?   Swampy ... View more

Sus12 -   Sorry to hear that you are still suffering with post rads side effects - it can be very sore as I found out for myself. I was prescribed Hydrogel by my GP and was told to be liberal with it and used it 3/4 times daily at its worst as it was so soothing and cool. I think it's the heat that makes these things so uncomfy would a cooling ice pack help at all? As for the fatigue - that's all normal - I'm now a month post any active treatment and one day have all the energy of a Duracell bunny and the next I'm like - who took the batteries out?? But you do pick up and improve - everyone says to me how well I look (which can only mean I did look blooming awful while going through treatment!!) but it's amazing how much better you begin to feel once all the active treatment is over.   Mary - the tightness seems to hang around for a little while - I seemed to develop large areas of hard necrosis in my reconstructed boob but a few weeks on it seems to be softening up again but then massaging with E45 could be helping with that!!    Suebond - I'm glad that your seroma has improved and that you will soon be moving on with your next stage of treatment. I'm not on Letrozole but Tamoxifen is just as capable as its counterparts of producing new side effects. The problem is working out which is a throw back from Chemo/Radio or the Hormone therapy!!    I don't think we ever really know our limits lol - we are so keen to get back to pre BC normal that we forget the treatment we have all had is a lot harsher than we ever believed it would be. I have been on occasion - really emotional over really ridiculous things and live in dread of having a total meltdown. I've not been for proper counselling yet but had a really good complementary therapist at our hospice who has been a wonderful shoulder to lean on throughout my treatment. It will be interesting to see what happens on the Moving Forward course in May as hopefully I will be in the middle of my phased return to work and might be a raving loony by then.    Swampy ... View more

Hi Mary    I forgot that one!!  the toe nails!! Some of mine are lifting but have not gone yet and my fingernails have little ridges like tree rings!! Probably one for each chemo treatment lol!!  It's good that you are planning to be more active - I have been persuaded to do a 5K run (it'll be a walk!! in my case!!) for Charity with my sister and niece in July so that will be fun.    Swampy   ... View more

Hi Carrie  The sore feet could be peripheral neuropathy and something that we have to live with while on Chemo but living in the hope that when treatment is finished that everything will return to normal.  I'm now a couple of months post treatment but still have PN in Hands and feet - much better now but still there - but I had it mildly compared to other ladies both on these boards and at my monthly BC group. If you are sufffering with joint pains etc then it could all be part of the same thing sadly. I hope your GP can offer some pain relief and that you are soon feeling more comfortable.   Swampy ... View more

Hi Everyone!   How are you all getting on? I know the majority of us have completed or are very near to finishing our treatment regimes but it's always good to catch up. After all the aggravation of my skin breaking down after the radiotherapy I'm happy to report that following lots of loving care and loads of Hydrogel!! my skin is now back to normal and I can wear a bra without a dressing/padding etc. I still have a few lingering side effects - still have the occasional weepy eyes, peripheral neuropathy in both hands and feet - not painful but still aggravating. My husband said I was out for the count the other night but my feet were dancing a jig in bed - he ended up getting up to make himself a brew because it was so maddening to him (bless him!!) The eyebrows, eyelashes and yes hair!! are all beginning to show themselves. I cold capped throughout treatment so the new hair is so far is white - it remains to be seen if it stays that way or if it starts to grow with colour in. My hair is now growing the coloured hairdressers part, my normal hair colour and lots of gray/white which would have been covered by my regular hairdresser visits. Now I'm trying to decide whether just to let my hair do its own thing - I'm reluctant to colour while I have new growth as a BC friend said her hair was so porous that blonde went bright yellow and to leave off colouring for as long as possible. But my daughter thinks I'm too young to go grey!! and thinks it will make me look older and discussions about being on trend with grey are for younger people!! lol!! I am getting aches and pains particularly in my back (similar to when I was on the gcsf injections) but that could be down to being more active - gardening etc but nothing seems to ease it  - tried heat packs, painkillers, rest, gentle walks - I suppose if nothing else I could try the anti-histamines again - they worked before lol!! But then again it could just be a side effect of the lovely Tamoxifen!! But the best thing is how finishing treatment seems to switch on a real healing vibe. People comment about how much brighter and how well I look (make up helps here - the Look good feel Better course is coming into its own now lol!) I do feel loads better - maybe it's because the treatment does really drag us down and we don't realise it. I do have fatigued days which are frustrating but I'll have to live with those and see how things go when and if I start my phased return to work in May. But a final decision on that will be made when I see the oncologist in three weeks time. Still waiting on my next appointment with the plastic surgeon for when the next phase of mastopexy and tidying up of my reconstruction jobby will be discussed but other than that life is good and there for the living!! Oh and I'm booked onto to a Moving forward course in May because I still feel I need to sort stuff out in my head but not gone the full counselling route yet. My Hospice worker has been an angel with chats and things when I go for my reflexology treatments but sadly they are coming to an end so it remains to be seen if I need any further help there - my GP says to see how things go - it's always an option later. So that's my update - how about everyone else? It would be good to hear how you are all getting on. We will all have good and bad days in the future but the lovely sunny days we have been having are a sign of good things to come.   Hugs  Swampy   ... View more

Hi Millie    I was one of the unlucky ones with the tummy wound. But it is quite rare and you are told about all the risks with any surgery. Eventually I was attached to a Negative Pressure Vaccuum Machine which improved things massively but as I said I was one of the unfortunate ones. Plenty of women have this operation and never have a problem. Yes the scar is a bit untidy now but this will be revised at a later date but overall the DIEP free flap operation for me was the right decision. An implant was rendered impractical given that I would need radiotherapy too as they tend to encounter problems. I woke up from my operation still with two bumps at the front (lol) which was a major thing for me and the operation was straight forward and took 'only' seven hours whereas upto nine hours is average. It is scary but it is doable - as is much of what you will encounter on this rubbish journey that is breast cancer. Having done the MX with immediate reconstruction, chemotherapy, radiotherapy and now Hormonal Therapy - life will never be the same again but at least I'm still living it.  Wishing you lots of luck and encouragement.   Swampy     ... View more