I am about to have Herceptim 6 (of 18) and apart from a few aches and pains and having much less energy, I have also put in weight! I can only put this down to the Herceptim as my diet hasn't changed. I am on Anastrasole 1mg daily. I am 5'9" and yesterday weighed in at 12 stone 7! I've put on more than a stone since my treatment started. I have been having adjuvant BC treatment since January 2013, after a WLE in November last year. I feel bloated too and fed up about the extra weight creeping up 😞 Has anyone else experienced this? Is anyone else on Herceptim also on a diet and if so how has this affected you? I do get very tired more quickly and am not sure if this is a delayed reaction to the radiotherapy which I finished in July or the Herceptim. Should I diet or ride out the treatment and then diet, I don't finish Herceptim till June next year and I'm so fed up with feeling less than 100 pc and want to do something proactive about it my weight. I suppose I'm just worried dieting will make me feel a lot worse than I do already, but hate being out of control where my weight is concerned. Any advice please?
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I slept post cold cap for the first 48 hours afterwards with nothing on my head, the conditioner dried hard and so was not messy. It was not a great look!! But worth it in the end.
They gave me a 'sleep cap' which I didn't use - apart from looking hilarious, it also pulled my hair on the pillow and I felt better leaving the hair loose.
Best of luck with the CC - I Found all the nurses at Lister very supportive and encouraging when I was using the cc. I was quite stressed most of the time while using it and they were understanding and patient in what is a very hectic chemo suite - however, I know that not all nurses in every hospital are as good as mine, so do make sure you are happy with the fit of the CC and don't be afraid ask questions and query things - it could make all the difference to the overall outcome at the end of chemo. Will be thinking of you - and everyone else going through the CC and wishing you all well.
Fingers crossed for you! XXX 🙂
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The very best of luck with the cold cap! It worked well for a lot of ladies on here and I am now, over 4 weeks post my last chemo, so pleased I persevered with it.
The hair needs to be quite wet rather than damp, though not to the point of dripping, it then needs to have been coated in conditioner. I used one supplied by the hair care charity at Lister hospital, who were so supportive all the way through my treatment. It was a natural tea tree Conditioner. When I started using the CC, I was shown by the nurse how to do my hair, they combed it straight back from the head, with no parting. Some people I know have left the parting in, but for me, the combing straight back really worked.
Remember the first 20 minutes are the most uncomfortable, after that the head seems to adjust to the coldness of the cap and it becomes much easier. I just gritted my teeth and put up with it - anything was worth it, if it meant keeping my hair.
Make sure the cap size is right for you - the nurses will try on different sizes to make sure they fit properly, if in any doubt, tell them you want a smaller one if it feels loose or ill-fitting. The key to the cc working is it being correctly fitted and as tight as possible. If the chin strap is too loose it won't work as well.
Have a hot drink once you are set up in the CC to keep you warm and I also took a throw in with me as you can feel cold. I also sleep on a silk pillowcase which helps the hair at night, it doesn't pull on it during the night. I am stilL sleeping on it now!
It is a good idea to keep the conditioner on after the CC/treatment for 48 hours if you can bear it, just leave the hair alone, don't even comb it out, let it settle down and wash it less frequently than normal, I washed mine twice a week, sometimes less. I wore a cap around the house and when I went out, just adopted a much more casual style called 'the wash and go look'!!! I would recommend that you don't use heat on your hair, so hair dryers, straighteners or tongs etc. These should be banished to the cupboard! Wash hair carefully and don't massage the scalp, rub hands together to make a lather, rather than scalp!
One more thing, be aware that everyone I know who has used the cold cap does lose some hair, the hair charity told me to expect to lose a third of my hair, though I don't think I did. It just thinned a bit all over and at no point did I need to cover it or wear my wig. Best of luck with your treatment Jan. If there's anything else you need to know, just ask. 🙂 xx MJX
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Hi Cybele, It sounds to me like you are the sensible one, although I can see that going to the hospital every day again could feel a bit like being caught in a trap. The sheer grind of hauling yourself in there every day will probably affect me in the same way when my rads start in a couple of weeks! 😞
Since coming out of hospital on Thursday evening, I have absolutely nil energy, by that I mean I can't even walk up the stairs without getting breathless. Even changing the beds today was a performance in itself - I had to call for assistance! Puffing and blowing just changing a couple of duvet covers seems ridiculous and totally pathetic to me, coming from someone who, before treatment started, was fit and active - and at least a stone slimmer! 😞
Today I was supposed to go to an old school friends birthday party in the garden, but couldn't face the idea of actually getting there! Then havng got there, having to socialise and act as if everything is hunky-dory when it ain't!! 😞
Partly I think it is my total lack of energy and general weakness is down to the respitory infection that put me in hosptial, but it is still getting me down big time!. The thought of having to glam up my catweezel type locks - as well as put on something a bit glam-ified, put me right off going to this 'do' today - and I'm fed up about that too.
So, I am sitting in the garden - that so badly needs attention - thinking I should have made the effort to go today. Everyone I know was keen to see me, but the sheer act of getting ready - and then thinking someone might say something sympathetic and send me into floods of post chemo tears was just too much of a risk. So no party for me! 😞
Like you, Cybele, when I start rads, if past history whilst on chemo is anything to go by, I am bound to lounge around during rads and probably feel guilty too! I've spend almost the entire time during chemo feeling guilty about something, beating myself up about having to stop working for a time, beating myself up for not having any energy - you name it, I feel guilty about it! I suppose I am normally quite driven, I have never been ill before my lumpocomy in November. It's been 8 months of absolute blo.... hell!!!! 😞 people say 'just do what your body tells you'.... that's all well and good, but if your mind is clear and active and is telling you just the opposite, it is a constant battle..... Grrrr..
Now I understand what post chemo 'melt-down' is, having been so positive all the way through chemo, just gritting my teeth to get through it, I now find myself on a bit of an emotional roller coaster - but the low energy and feeling worse than during chemo, is really getting me down most. I'll be 2 weeks post FEC6 tomorrow and I am SO hoping things will start to improve next week.
I had to cancel my rads planning meeting on Friday because I felt so ill, so this has now been re-scheduled for next Friday, with rad's starting the following week. Then three and a half weeks of being back in the jail that is hospital, that takes over everything. I can quite see how your mood has slipped back, Cybele..I am expecting to join you there in the near future! I will have an hours drive each way to Mount Vernon hospital every day of rad's, i'm not looking forward to that bit either!
Anyway, I have ranted on long enough now....ranting on the CC thread about nothing directly relating to the CC, just a general all time moaning RANT! 🙂 !!!!! The sun has come out now, so let's hope it starts to work it's magic....
It's amazing how the ability to rant into cyberspace has such a therapeutic effect, to people who have been there - and know what it feels like.
Best of luck with everything Cybele - and the end of your rad's which will soon be here. I am sure that once they are over you will once again regain your post chemo Aegean 'spring in your step'- not long to to go now! 🙂 XXX
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Hi Border Collies!
Your advice re. Hair colour post CC is really helpful - thank you so much for taking the time to respond in such detail. The delay to my response was due to my being admitted to hospital for 3 days with a bad respitory infection which set in 8 days post FEC6. Having finished FEC, I then went totally mad in the garden far too early and made myself really ill - temperature of 40 degrees! A cautionary tale to anyone reading this - do not get too over enthusiastic at the end of FEC and take time to recover properly - exactly the opposite of what I did!
I went to H and Barrett yesterday and found a light ash blond Naturetint which I will try, but will leave it until several weeks down the line before using it. I will steer clear of Daniel Field after your experience with it, Border Collies. I was originally a brunette but started going grey at 30 so have been a bottle blond/highlights girl for many years. I think it sounds like I'd be better to stick to a block colour like nature tint - when I pluck up the courage to colour it at all, that is! 😞
I can put up with white silvery hair for a few more weeks, but am not quite ready to adopt it as a permanent 'new look'! Friends have said that they like the colour of my natural hair, but I think it's really a case of buttering me up!!! Also they are more than likely trying to boost my confidence after chemo, knowing I am someone who always has taken care with my hair And would never normally be seen dead with any kind of roots! Anyway, I will hang in there for a few more weeks, with hair that I think looks like a cross between Catweezel - and the Wild Woman of Borneo!
Thanks again for your advice, Border Collies. I will report back via this thread in a few weeks, after my venture into the world of Naturetint! 😉 xx
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Hi, Wendy, Thanks for the suggestion of the cancer haircare at Lister. I actually had chemo at Lister and Jasmine and her team were hugely encouraging with the CC - and generally a great support To me. They only had two cold caps available and so during my treatment I only saw one other girl using the CC the entire time I was Being treated.
I have decided to live a little longer with my not so attractive greying roots....I've had them since January, so another few weeks won't make any odds! 🙂 xx
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Glad you are feeling so much better 6 weeks post Feccin' FEC!!!!! Dead jealous is what I am! 😉
Yes, I agree about the emotional roller coaster...I'm so pleased to be rid of FEC, yet I do have up and down days and can get quite emotional and angry with myself as my energy is just non-existant. I am impatient to get going, do things and get back to normal, yet I tire so easily and then get annoyed with myself. Obviously 6 days post FEC 6 I am still going to be struggling with energy, but being quite driven, it is hard to just 'do nothing' and I have never been one to sit around. Grrrr... 😞
Part of my impatience is due to the fact that we have a large garden which requires a lot of maintenance and even with someone who comes in to help once a week, it is hard to manage it. I suppose trying to work out in it 3 days post FEC 6 is not very sensible Is it!!!? Hence today I am suffering for working out there when I'm still not up to it. Steroids are indeed wonderful things! 🙂 And boy, am I paying the penalty today! 😞
I can't wait to be 6 weeks post FEC like you!!!! I know I just need to be more patient with myself And give myslf time to recover properly. Like you, I am going to leave my hair alone for a while just to make sure it doesn't try to do a last minute disappearing act!!;) Okay, so I have head full of silvery grey hair, but at least I have hair...the bottle blond will just have too wait in the wings for a while longer.....MJXX
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Have finally finished round 6 of feccin' FEC chemo ! Cold cap has worked very well, I am pleased to say. Hair still hang in' in there, so to speak!
Can anyone a bit further down the line advise me how long you waited before colouring you hair after chemo?
I am only 3 days post my final FEC and am expecting to need to leave my hair alone for a long time yet, to let the chemo out of my system, but any advice you have would be really appreciated? I suppose I'm just concerned that having gone through cold capping, which anyone going through it will know can be uncomfortable, in my eagerness to get back to normal, I don't want to now rush into putting colour and blond highlights back in, only to have the hair fall out now!
I am thinking of using Daniel field colour, has anyone used it after CC and if so, how did you find it? Any feedback or advice welcome!
All the very best to anyone starting out on or who is mid-way through using the CC - from where I'm sitting right now, it has been SO worth putting up with it to now be out the other end at long last.....and a grateful deep-sigh-of-relief kind of goodbye to feccin' feccin' FEC!!! 😉 xxx
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Martha, if you are thinking about trying the Cold cap, it might be worth reading The thread 'Calling all Cold Cappers'. I started this a while ago in the hope of getting advice from other ladies who had used it and were a little ahead of me with their Chemo - and received a lot of helpful advice.
I have just finished FEC 75 chemo today (I had Fec 75 x 6 for adjuvant an 2cms lump IDC ER+ 7/8 + HER2 borderline for which I will get Herceptim injections after chemo. I had a WLE and SNB clear nodes and margins in November) The cold cap has worked very well for me and although my hair is a bit thinner, I still have a full head of hear and have no bald patches, meaning my wig remains on the wig stand - and has never seen the light off day! 🙂
If the CC is available for you at your hospital, then I do recommend you give it a go - it really helped me get through chemo, the hair loss part of the treatment was, for me, the most upsetting. And the cold cap made it more manageable and life more normal. Make sure you are fairly assertive - you may not need to be of course - i say this only because with the CC you will need a 5 hour treatment slot, as the cold cap needs to be switched on for half an hour before treatment starts to freeze the hair follicles, then a further 2 hours after the hair loss drug has finished infusing. Depending on where you are being treated, some hospitals are not always that forthcoming about CC availability, mainly because chemo nurses can be very stretched at the best of times and the CC does mean more pressure on often limited NHS resources. If you are being treated on NHS that is. To reassure you though I am NHS and my treatment, including CC, has been first class.
I hope you will be a lucky with SE's of your chemo, mine have been limited to the first 5 or so days, then I just get more exhausted than usual but no other SE's to speak of. You will find it is do-able, liKe you, I was really scared initially about having chemo, but decided to do everything I possibly could to try to Prevent a recurrence. I personally think your decision to accept chemo is the right one.
Also just to add,as some of the other girls have said, it's important to know what your treatment regieme will be - not all chemo causes hair loss. But it sounds as if you may be put on FEC as from what you say you treatment will be for adjuvant BC ( where it has not spread into the lymph nodes) and FEC does cause hair loss. So the CC could be the answer for you! Whatever you decide, the very best of luck with your treatment. I was so much better once treatment started, the hanging around waiting for treatment plan/ appointment etc. was the worst part. And I sure it will be the same for you. Good Luck! xxxx
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How awful for you, Lemongrove. To have to witness what was essentially such private family grief right opposite your hospital bed must have been dreadful for you. No wonder you are feeling down, being couped up in hospital is bad enough in itself, but with this added to it, no wonder you were blubbing! If the whole forum had been in your position, I expect the whole lot of us would have exited to the quiet room!!!
I would have thought they would have moved the poor lady into a side room - they did that when my elderly aunt was dying on an an NHS ward and we were called in at 1am to be at her bedside. When we arrived on the ward we had the privacy that we needed, which enabled us to spend her last night with her, her dignity intact. It must also have been difficult for the family too, to have no private time alone with their relative.
I really hope they let you home ASAP, there's nothing as depressing as being in hospital, the best tonic for you will be being back home and in your own bed ASAP. Fingers crossed you get out SOOOON! just grit your teeth and plan where you in the garden your new plants will go ! 😉 XXXX
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Has anyone experienced hair thinning or hair loss while on Letrozole? I will be starting rads in about 3/4 weeks then Horomne tablets. My ONC has suggested Letrozole, although Tamoxofin has also been discussed. I have been reading about SE's of both and whilst I know they may not apply to me, it would be really helpful to know what others a bit ahead of me have experienced.
I am also concerned about the potential for weight gain on Tamoxofin and the potential for increased risk of Osteoparosis on Letrozole (my mother and her sisters have it) so am dithering about which drug to go for. I am aware each of these drugs are from a different group of ER inhibitors and have researched both on the MacMillan site, but the a possible SE's do worry me. I have put on about half a stone on chemo and the thought of putting on any more weight over the 5 years I have to take these tablets is worrying me.
Can anyone offer any pearls of wisdom? If you are a bit further down the line than I am I would really appreciate any advice you have with regard to the SE's you may be experiencing on either of these drugs. Many thanks. MJx
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Lola, I had EXACTLY the same experience as you when I too was admitted to hospital after REC 3.
Not one person at the hospital I was admitted to had been trained to use the Portcath and they were scrabbling around playing 'search the vein'! In the end I had the needle inserted into a vein in my foot - the most agonising experience ever! 😞 I am more vigilant than ever now, absolutely intent on avoiding a further hospital stay at all costs!
The Portocath is used by the chemo unit staff, primarily to administer treatment through it - but they also occasionally take bloods from it too. It is the best decision I made to have it fitted.
The chemo unit normally take bloods from a vein in my hand for standard blood tests to avoid infection, but will use the portocath on the morning of treatment too in the event that blood tests need to be repeated prior to treatment taking place (this has happened a couple of times with me when bloods were a bit lower than they wanted) xx
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Hi Littlescoot - I was advised before starting using the CC to wash hair between 48 and 24 hours prior to using the CC. I was also advised to leave hair alone afterwards for at least 48 hours, that means even tho it's grungy and yuk, don't comb it, brush it or anything, just leave it as it is and stick on a cap or scarf over it. Then forget about it for 48 hours!
Sleeping on a silk pillowcase also helps to stop the hair from pulling from the root. Best of luck with using the CC and also with your treatment too. I was scared to death before having chemo, but whilst it's something I'd rather not be having of course (!) it is not half as bad as I expected - and is do-able. MJ xxx
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Annie - I'm so sorry you are feeling so worried. You are not a hypochondriac! Far from it - you have what sound like very upsetting symptoms which you do need to talk to a doctor about. Everyone is different and we all will all have initially had different symptoms so I don't think any one of us would would feel we could give health reassurances without also urging you to go to a medical professional.
I know it's hard and if your doctor makes you feel uncomfortable or that you are there under false pretences, then go to another doctor!
Don't delay any longer, bite the bullet and get down there!. Of course you will be worrying if you have a family history of BC, but the symptoms you describe may be down to something else entirely. Unless you get checked out by a doctor and the Breast Clinic, you won't know and will continue to worry, possibly needlessly. Once you know what you are dealing with, you will be better placed to deal with things.
In the meantime, I would highly recommend you phone the BCC Helpline, just to give yourself a bit of moral support. The girls there are very knowledgeable and supportive and know what you will be going through. I have called BCC myself before and during diagnosis and really found they helped me get through.
Best of luck Annie, thinking of you, try not to worry. But I do hope you will not procrastinate any longer! 😉 xxx
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Namaste - I endorse everything Lola says, you will be bruised for a few days but will soon just feel the port itself, which is hard and a raised up, but the pain from bruising should completely disappear. You will just be aware of the plastic port itself just under the skin, which will be painless.
I also had my portocath done under local and although it was an uncomfortable experience, weeks down the line I would say that it was the best decision I made to have it! It makes treatment much easier all round, there is no dancing around searching for non- exist ant veins - and you also avoid bruising to your hands/arms and also avoid pain in your veins from the point at which the needle goes in.
I think after a while you will be very pleased to have the port. Another plus is that it needs minimal maintenance of your part, just a three weekly flush which the nurses do - and that's it. Once it's healed, you can shower, bath and do everything you normally do without having to worry about covering it up/ getting it wet etc.
I hope your bruising clears up soon. Very best of luck with your treatment - and your Portocath! 😉 xxx
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Cybele - thanks for your feedback, we have both been very lucky with the CC, I am keeping my fingers crossed that it will 'hang in there' post FEC6 which will be in a couple of weeks time. I am a cycle behind you I think.
I agree with you that there is almost certainly some genetic element involved between those people on the CC who keep there hair - and those that don't. l too remember several elderly uncles in their eighties with thick white locks, which as C says is unisual - I hope I have their same tenacious hair too! Also key to it working is the cap has to fit snugly and be as tight as you can bear it! :(!
On my earlier entry on this thread I also meant to mention that I changed on FEC 4 to a smaller outer CC hat size, but have retained the same outer hat all the way through, ( same big head, just less hair!) but with a smaller outer hat size it has made the whole thing tighter over the scalp and hopefully will get a better result.
As far as other FEC SE's, go, unlike you, I have been fairly lucky with SE's of FEC. The sickness meds have worked for me mostly, I do get very tired and sometimes in the first 5 days or so have an almost indescribable weakness, a feeling of total exhaustion, one minute I am on a steroid induced high, the next minute almost coma-like, all very bizarre, but always resulting in having to Stop what I'm doing and lie down. Then I might read something, see something or someone and without warning feel really emotional for no apparent reason. And then there's the EATING...the steroid induced greediness, the grazing on crisps, nuts and chocolates, all figure in the first 5 days of my FEC Survival guide....I had thought I might lose my appetite and shed a few pounds, but NO! I have put on about 7 pounds since FEC started and will need to do something about this before too long.
A cold-cap wearing Betty Bunter lookalike I will turn out to be if I don't exert some WILL POWER in the Food department VERY soon!
Great to hear that you are feeling so much better now, Cybele, I am counting the days till the end of Feccing FEC too. Thanks again for your great blog, it was highly entertaining and really made me laugh, a great source of encouragement. XXX
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Thanks for your positive feedback on Lexrosole! Good to hear this - thanks. I will talk everything through with my ONC in a week or so. I've still got one more chemo to go and rads then tablets for 5 years. Best wishes to you - and to everyone else on this journey we would all rather not be on! XXX
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Hi Jayne, that's really encouraging to hear how your hair is post FEC 6! It sounds like we both feel the same way about the CC and want to encourage others to use it.
Like you, I am keen to return to a degree of normality as soon as possible after chemo and am hoping my own hair holds out like your has! I am not keen to be wearing a wig over the summer months either, so am keeping my fingers well and truly crossed! I'm cautiously optimistic, but will wait till I'm at least 3 weeks post FEC 6 before popping any champagne corks! I am going to use Danial Field veg dye too when the time comes - thanks for all the advice and feedback. Best of luck Jayne. XX
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