Breast Cancer Care Forum

Forgot to say try sleeping with a pillow between your bad arm and body - it helped me with frozen shoulder and it helped during rads too. Also do the same with a cushion when you're sat down😘   Joemic x  ... View more

Hi Mangomum, Good to hear things are going relatively well so far. As for the pains and aches, they're pretty normal, I think the radiation causes irritation to them, they did to my scars but they are feeling better now. The shoulder pain is due to the way you have to keep your arms during treatment - a bit like a trussed up turkey🦃😁. Only thing to do is take some painkillers before treatment, if you need them and just keep up with the exercises - particularly shoulder roles (both forwards and backwards) and slowly extending your arms and lift them up until they're pointing as far upwards as you can get them then out to the side up to shoulder height, I can't say for sure if the exercises have definitely improved the shoulder ache but it is alot better now. I believe the tightness is down to the radiation, I still moisturise 3-4 times a day plus extra if my skin feels tight, it then loosens and feels better. Also don't forget to moisturise under your arm pit and the skin next to your pit, basically as far as your good arm can reach going over your chest - the radiation manages to reach that bit too and that is the bit which I feel the most tightness.  Hope these tips help you a bit and remember it does get better, but I think you're a bit like me and get frustrated at the length of time everything takes- patience with my health is not one of my virtues😏. Good on you for making the conscious decision not to let the possibility of recurrence blight your life. We can't spend our time worrying what may or may not happen, we have a life to live and we should jolly well enjoy it🤩   Good luck with the rest of your rads, they'll soon be over with too😘 Joemic x  ... View more

Good evening lovely ladies   What positive news from you all..fantastic, it's always good to hear positive news, means our diagnosis can't keep us down for long, no matter how hard it tries to make it for us what a fantastic bunch of warriors everyone has been. If nothing else this whole sorry episode has taught us just how much inner strength we all have in the face of adversity and how we can face anything in the future with courage and determination. I feel privileged to have been able to share your journeys with you and the support both given and received has made these past months a little easier to bear and for that I thank each and every one of you . Now the mushy bit is over..........   Mangomum - Hope the rads went well and you are not cooking above the gas mark 1, my boob is still on 1 but my nipple is gas mark 7 at times ooh it gets hot!, I think that's probably because it was sore going into rads, I think the nerve endings were finally starting to heal, hopefully the rads won't have caused further damage to them. Glad they are over now.   Dezee - What a rubbish time you have had throughout your chemo. Doesn't matter how old you are, you're steaming ahead to your LAST chemo, whey hey I am so pleased for you, what a trouper you have been battling through those rough times what strength and courage and here you are ready to have your last one, you go girl you've definitely got this   Ruth - I am so pleased you feel better than you expected and surgery went well and after all that organising and preparation you can take it easy for a few days (although that ironing pile always seems to breed in my house ).    Rose - I hope you managed to get your last chemo and side effects stay away this time, you are on the other side now. Fabulous. Being snappy and irritable is all part of the process, it's a very frustrating thing to go through, hopefully you will find things settle a bit for you once you have seen the surgeon, it's all the pent up anxiety and anger we bottle up that causes it - we need an outlet but unfortunately it's not always the outlet we want but remember it does pass and you are well on your way to finishing your treatment plan. Keep on going, you can and will do it, you've done fantastic so far.   SP - Glad you're starting to feel normal again, you had such a tough time but you made it, you've coped with all the treatment so far so I am sure you will manage with the Letrozole, your determination will make sure of that.   My rads are finished and apart from the hot nipple and a bit of skin redness I have done really well, at the moment I am waiting for it to get worse (was told it gets worse for 2 weeks following rads then gets better), I still moisturise 3 - 4 times a day and drink lots of water so maybe it is as bad as it is going to get...... she says with fingers crossed . I've been to see my GP and have worked out a plan to return to work on the 4th Nov - I am so looking forward to it so I can firmly put all the active treatment behind me obviously I can't forget but I can get on with my life and I also refuse to let it blight my future, what will be will be - I choose not to spend my time worrying about what may or may not happen. Good luck to everyone on the next stage of your treatment whether it be active treatment or not.   Joemic x  ... View more

Hi Ladies   SueLSE - I think it should have been your last rads today? I hope it went well, I bet you're relieved it's done now - I am so looking forward to my last one on friday; like you I've had long journey times not to mention the waiting at the hospital - I have only been seen on time once, they are consistently 30 mins delayed.   MissWhite89 - Hope you've been coping well, we've only 2 left to go now yeah can't wait. I've not suffered any fatigue yet and am still managing to walk up the hill from the train station, although I'm finding it a little more difficult and the breathing is a tad more laboured but hopefully the extra breathing will shed a few more calories .   Clarabelle - How are you getting on are you finding it any easier now?   Good luck to everyone else who has finished/about to finish or are still going through rads are as well as you can be   Joemic x  ... View more

Hi ladies   Mangomum - I hope your rads are going well so far, I'm still cooking on gas mark one although the skin is going a little darker and looks a tad mottled however, there is no pain or itching so fingers crossed it isn't going to get too bad. I'm still managing to walk up the hill from the train station although it is feeling a little harder but not enough to look at an alternative route and as I've only two left I'm sure I'll manage it then I'll collapse and sleep for a week .   Rose and Dezee - Keep going ladies you're both nearly done, not much longer, you'll get there   SP - I hope your side effects are subsiding now, to be honest the only side effect I got from the Zometa was fatigue - although the chemo nurse insisted it was the chemo and not the Zometa but didn't have an answer when I asked why it only happened when I had that , I didn't realise initially but it was my family that pointed it out. I guess they don't really understand that we aren't all the same and things can affect us all differently and as unique individuals our bodies don't always follow the rules .   Ruth - I hope you are starting to feel a little less fatigued now and getting your energy back - have you got a date for your surgery yet?   To all other May ladies, I hope you are all coping well and getting some of your energy back.   Joemic x  ... View more

Hi SueSLE I am taking bisphosphonates namely Ibandronate acid tablets. I was initially having Zometa infusion every 2nd chemo but was put on the tablets after chemo finished. I have been taking them for 6 weeks now as well as Letrozole - I have had NO side effects from either of them.   With the tablets you have to be sure you remain upright - sitting or standing for one hour after taking them to ensure they have gone down properly as they can irritate the oesophagus, you need to take them with 200mls of water and can't eat or drink for 30 mins following. It sounds complicated but you soon get in the swing of it, I get up clean my teeth then take the tablet, by the time I've finished getting washed, dressed etc I can then eat and drink. To be fair it's not much different to my normal routine so haven't found it an issue.   To minimise the risk of jaw problems if dental extraction is required I would have to stop the tablets for 6 weeks have the treatment then restart them 6 weeks after the treatment - which to be fair is an option you don't get with the infusion. I can only go on my experiences from the last 6 weeks but so far so good, if I did start to experience any issues I would contact my Onc.   I am 53 and was advised to take them as they have been shown to help prevent recurrence in the bones and as Letrozole can weaken them I figured any weakness would be less so if I took the bisphosphonate. It is never easy making decisions regarding treatments but we can only do what we think is best for us.   I hope this helps you a little and I wish you the best with whatever decision you make.   Joemic x  ... View more

Hello lovely May ladies Mangomum and Ruth, it's nice of you to say I inspire you but to be honest you both inspire me. There's no wonder you're both feeling the fatigue not only going through some very difficult treatment and nasty side effects but also keeping active with you're children- phew fatigue, you'll beat it soon, bodies just need time to recover; it just never seems to do it quick enough for us does it🤔. Mangomum I hope the water and bit of food after rads helps you too, I've been ok too for the last weeks rads - the water especially helps, only down side is the amount of times I need the loo after, as long as I'm not travelling more than the 1.5 hrs I'm fine, otherwise it's an oops moment, definitely no coughing allowed😂. My skin has only started to go a slight pink after 10 rads so will have to see what the next 5 bring. At the moment the heat in my boob is probably a gas mark 1 so not bad at all. Keep drinking the water and slapping on the cream and hopefully you will only go slightly pink. You can do this😘.   Sorry to hear you've continued to struggle with your treatment SP, you'll get through you have a strong spirit which will help you.   Dezee - keep going you're so very nearly there now - you can and will do it, that 🔔is in sight now.   All other ladies I haven't mentioned but think about often, I hope you are all well and progressing well.   Joemic x ... View more

Hi Clarabelle I was exhausted after my first 2 treatments, however for my 3rd and subsequent treatments I ate within 15 mins after finishing my treatment either fruit or wholemeal sandwich and a handful of almonds plus drank at least 500ml of water and have not suffered fatigue since and I am now 10 rads down and 5 to go. I cant say for sure it's down to the eating and drinking but I'm going to continue.   Hi everyone else, I hope treatment is going well/has gone well. I got a very slight pink tinge to my skin after my 10th rad but it went when I slapped on some aloe vera gel, it does seem to become pink again when I'm having a hot flush then goes again when the flush has finished. I put E45 cream on at least 2 hrs before rads (recommended by radiologist), Aveeno straight after ( wasn't on the recommended list but radiologist is happy I'm using it), plus another 2-3 lots of Aveeno between getting home and going to bed. Time will tell whether this regime will work or not. Keep well ladies, we're near the end now.   Joemic x  ... View more

Hi Paula You sound like you have been through the mill since your diagnosis and tratment, no wonder you're worried.   Re: you're query about estrogen following hysterectomy. There are a great many of us who have gone through the menopause where estrogen levels drop but still end up with estrogen positive breast cancer-highly positive at that. As I understand it although estrogen levels drop following menopause and hysterectomy, our bodies still make estrogen in our fat cells (you don't have to be overweight for this to happen, although being overweight increases the risk factor).  The vast majority of post menopausal women who have high estrogen tumors are prescribed drugs such as Letrozole.   I fully understand your anxieties relating to Letrozole- I was extremely anxious about the side effects before I took it. I have been taking it for 5 weeks now and the ONLY side effect I have experienced is some slight flushing but I can't say for definite it is the Letrozole as I was having them anyway.   What you tend to find is that it is only people experiencing horrible side effects that post about them not the tens of thousands of other people who don't, consequently it can seem much worse than it is. Unfortunately all you can do is give them a go and try to keep an open mind. If it doesn't suit you there are others your oncologist can give you to try.   There is a lady on here called Chick1, she has so much knowledge on a lot of things relating to breast cancer and it's treatments and I am sure she will be along soon to make herself known to you, she maybe able to answer some queries you may have or point you in the right direction.   I wish you the very best for whatever you decide to do. In the meantime don't keep worries to yourself there are lots of lovely people on here who will be more than willing to help/support you.   Joemic x ... View more

Hi Butterfly10, I'm not sure about your type of cancer as mine is hormone  positive, there are sure to be some ladies who are also triple negative who could help or if you look on the 'Recently diagnosed with breast cancer' thread there is a specific one for triple negative and inflammatory breast cancer; maybe post on there?  8 of 15 rads done you're over half way now, what a trooper, I hope your skin is holding up and you are well. Not long until you're ringing that🔔. I hope you find the answers you need, there is also your radiologist, oncologist and breast cancer nurse who you could speak to or phone the breast cancer care helpline (I haven,'t used them myself but have gathered they are extremely helpful as are the nurses on the ask the nurses section). Good luck Joemic x  ... View more

Hi ladies   Glad things are progressing well for people. I was recommended Dove to wash with and aveeno, time will tell if it helps or not. I still don't like the machine (I'd rather have spiders crawling over me!) but the team are great and they've got it off to a tee now, I'm in and out so quick, no chit chat just get lined up and off we go - it works for me so I'm happy with that - only 10 left to go now . I was shattered after the first 2 sessions but it is a 1.5 hr train and bus journey there and the same back, nearly ended up visiting the seaside due to falling asleep on the way back . Since then I decided to pack myself up with a wholemeal salad sandwich, a handful of almonds and an extra water to have as soon as I've finished the rads and haven't suffered fatigue for the last 3 sessions - or over the weekend so I'm going to try the same strategy this week and see what happens, hopefully it keeps the fatigue at bay, I feel like I've been fatigued since my first chemo session.   Good luck for your treatments ladies and I hope any skin reactions are minimal.   Joemic x ... View more

Hello Ladies   Dezee - What a rough time you've been having, hopefully now you've had the blood transfusion it'll be a tad easier for you, you're nearly there. Our veins seem to cause us so much trouble don't they but at least it's sorted now. Good luck with this weeks dose I'm in no doubt your going to smash it.   SP - I hope you managed to have your final dose without incident. Now you can concentrate of recovering and being kind to yourself.   Rose - Glad you had a nice day beside the sea - a bit of sea air does you the world of good don't you think, especially when you have to stop off for ice creams . Not long now then you can get some well needed recovery time, keep going you'll get there.   Ruth - Excellent news that you too have now finished and on the recovery road, I know you're eager but I think it takes a little longer than 2 weeks to get your energy back, it will start creeping back very soon as long as you're not burning the candle at both ends - even though it's so tempting   As for me 5 rads down only 10 left to go, no skin change yet but they did say that would be from 10 days onwards so by Wednesday I might start glowing a bit but will see. I found the first 2 days very tiring but it is a 1.5 hr train and bus journey there and back, 3 hrs is a long time for a 8-10 min appt but it is what it is. After nearly missing my station on the way home the first two days, I decided to take a wholemeal salad sandwich with me and a handful of almonds to eat after my appointments all washed down with water (very healthy ) any way I don't know if it's that or not but didn't experience any fatigue for the next 3 sessions, so I'm going to continue with the same strategy this coming week and hope it wasn't a fluke.   I wish you all good luck with whatever stage is next for you   Joemic x  ... View more

Hi Ladies I hope you are all doing well and coping with the rads   MissWhite89 - Blimey, bless you you have been on one heck of a long journey, I hope you are coping ok with the rads, 3 down 12 to go, keep strong won't be long until they're over   CC1981 - You have done so well managing to work throughout no wonder you are feeling tired, hopefully it won't take too long until you feel 'normal' again. A holiday might do you the world of good even if you do stay at home and put your feet up for a couple of days just to give your body the rest it needs.   As for me I wasn't aware I would find the radio machine freaky until I was laid under it on Monday and found myself becoming very anxious which took me by surprise as things like that don't usually bother me. I was told it was ok as the machine wouldn't come too close or touch me, I've fought with a fair bit of hyperventilating the past 3 days although I nearly ran when they were setting it up today and it knocked my arm, hopefully will stick it out for the remaining 12. I was really tired after rads Mon and Tues and nearly ended up at the seaside after falling asleep on the train , I ate an apple and a banana after rads finished today and didn't fall asleep, I think the natural sugars woke me up. I'll do the same tomorrow and see if the same thing happens. A bit difficult to tell if the rads are making me tired or the constant struggle to get teenagers to bed before midnight whilst still having to get up at 6 to get them off to school again the next morning. I think the tiredness is more teenage related than rad related but will see.   Good luck to all continuing or starting rads and a big whooo to those of you who have finished.   Joemic x    ... View more

Good luck for your first day back at work Bananabrain, like you say a long journey but you made it🙆‍♀️, like you I have been using the lush soap, can't say if it's working or not seeing as though I don't know what normal hair growth should be😏. My eyebrows are growing back, increasingly weird very thick, well they will be if they keep on growing like they are😂. Also getting the furry fuzz on my face - the fastest growing hair is my tash😱, the hair on my chemo arm is growing back but still none on my good arm🤔. Definitely some strange stuff going on😂.   Dezee and Rose - Keep going ladies you'll soon be getting to the end of your chemo👍🏻you are 💪ladies and will get there, I'll be cheering you over the finish line when you're ringing that 🛎.   I hope everyone who has just completed or is about to complete your chemo is as well as possible.   Take care   Joemic x ... View more

Hi Ladies   Glad that treatments are getting underway and have finished for some Leonie68 - My sentiments regarding guidelines exactly. Why make them if they're not relevant. My chemo was started just after the guidelines recommended, my Onc said it did not matter - then went on about how I was at high risk of recurrence so we needed to start asap . Unless they have been in the same position they cannot understand just how anxiety provoking it is when the days go by and you still haven't started. I didn't think I'd be in any rush to get toxic drugs pumped through me either but I was . As the time for the radio gets nearer it does concern me regarding the risks especially when the nurse said you will get lung damage but don't worry it'll only be a tiny bit so shouldn't cause you any problems . Anyway as with chemo, I'm willingly going ahead and hoping the damn thing works.   MarFromEssex - How interesting that you didn't use any creams despite your skin being sensitive and only having negligible side effects, I hope this continues for you. Glad you mentioned the bra, I intend to wear one to and from my treatments - don't want anyone thinking I have some strange growths protruding from my abdomen (gravity has not been too kind!).   SueLSE - So glad you have started your radio as you say it's the last stage, I'm looking forward to being able to move on too. You did make me smile about startling people on the bus if you went bra less, It concerns me a bit too; mind you I think I've done enough startling people already - my head felt itchy when I was in the supermarket and before I knew it I whipped my wig off to cool down (I'd totally forgot where I was) , makes me laugh now remembering the look of shock on the poor mans face when I did it .   Jenniewren - I find the cream business a bit confusing as different hospitals seem to recommend different things, I've got some Aveeno but it's not on the recommended list at my hospital (Oilatum cream, E45 cream and Diprobase). Did you put your cream on as soon as your session had finished or did you wait until you got home? It'll take me 1.5 to 2 hrs to get home. I hope your fatigue is improving now.   MissWhite89 - We're nearly there now, well starting radio that is and we'll both be finishing the same day - lets hope it goes well for both of us, will be thinking of you.   Joemic x  ... View more

Hi Fluffball Another one here who had problems getting onto the site to answer you.   I'm with your GP, you are a very strong lady with so much inner strength and resilience you will get through anything BC throws at you. It is difficult waiting for test results and sometimes these come in dribs and drabs and it can take a while for them to all come in, unfortunately until they have all come back your treatment plan can't be finalised. Mine changed several times from diagnosis through surgery and until my last test result had returned. I'm a definite planner and found the whole waiting business difficult and caused anxieties but you just have to wait it out.   It sounds as if you have got a fantastic network of support, they will help and support you no end and you also have this forum where you can sound off or ask whatever you like. Being at work is good for you and if it gets to the point where you need some time off make sure you keep contact with your colleagues and have regular meet ups with them, it helps get you through - I met up with mine every 3 weeks whilst I was on chemo and every couple of weeks since.   You will have plenty of laughs throughout whatever treatment you may have and it doesn't mean you have to stop doing the things you enjoy maybe just adjusting them a bit.   No matter what stage you are finally diagnosed with there are treatments out there which enable people to live with bc and live well.   I hope you enjoyed your cuppa and your long warm bath   Joemic x  ... View more

Thank you for your reply Chick, I found it really informative, I do intend to ask my Oncologist if I ever see her again - just because I like to know the reasoning behind things. I was having the same thoughts that you mentioned in your post about levels and whether the meds are working or not. Surely in this day and age there must be some sort of reliable test, as you say some women have terrible side effects from the medication but this does not mean that it is lowering their levels and vice versa no or few side effects does not mean the medication is not successfully doing what it is supposed to do. 5 or 10 years is a long time to stay on medication that is maybe having no or little effect and the side effects are outweighing the benefits. It would just give women the opportunity to make an informed decision on whether to continue with a medication that might be unnecessary. Can you tell I'm not a big fan of taking medication unless it is necessary . Anyway hopefully in the future there will be such a test but in the meantime as you say we can only make decisions the best we can in the here and now.    Joemic x  ... View more

Hi MissWhite89   You'll be starting the same day as me then, how many are you having? Can't say I'm looking forward to the 3 hr round trip for travelling but am looking forward to finishing my treatment - well apart from the hormones and bisphosphonates that is .   Good luck   Joemic x  ... View more

Hi jenniewren   Thank you for the insight you have given and sorry you have had such a rough time with them, hot sweats uggh that was the one thing I hated when I went through my natural menopause and to be fair am dreading this time, however, up to now I haven't had any issues, just mildly hot 'episodes' which last less than a minute - I'll be happy if they stay like that. I've only been taking them just over a week but I can hope .   Anniej - I have the Teva brand maybe that's why I've been ok, I had to smile when I went to the pharmacy and asked what brands of Letrozole they had - the assistant looked at me gone out but she went and got them and they had Accord or some 'sun' brand she said she'd never heard of ; unfortunately I couldn't ask for the Accord brand to be put aside as I'm not due to put a prescription in for another couple of weeks ..   Thank You all for your replies ladies they are very useful to me.   Joemic x  ... View more