I sincerely hope Philadelphia cheese is ok as I to have developed a notion for it with ritz crackers, and more recently tuc biscuits as they are more salty and I can tast them better. I have stopped drinking actimel and other live bio yoghurts and make sure my boiled eggs aren't too runny.
Re hair: I'm on a slightly different regime 4 X TC (Doxetaxel and Cyclophosphomide) so basically Taxotore (the same as Doxetaxel) from the start. I had really thick hair, got it shaved when I got my wig pre chemo but as it grows really fast it was about a almost half an inch long when it started to shed on day 14, it was getting everywhere and after one shower most of it fell out so I got it shaved much shorter. I currently have bald patches with dark stubble. It seems to have stopped shedding but expect to lose more when I have my second chemo on Friday.
Still here and eating philadelphia cheese. x
Hi bagpus -
FABULOUS! - thank you for sharing. They are very similar to motorcycle buffs - buch so, so much more feminine!
It would be fabulous if you could share your link on this thread, too....
Morning All 🙂
Alex - I found having a plan was the key to managing the hair loss for me. I started losing it on day 11, shaved it, then had two more big sheds around days 20 and 23 I think. It was still messy but so much more manageable. Lost much of my other hair too but still having to shave my legs which is frankly just rude! Having just had my 3rd FEC my eyelashes look like they're beginning to thin but my brows are clinging on in there. Like Anon, I'm favouring scarves because of the heat and generally wear them in vintage styles which makes me feel less of a cancer patient.
Popkit - hope you don't suffer too much with this one. I found the fatigue a real killer in a way that hadn't happened before. First day off steroids I found it hard to find the energy to even chew my food. However, on the upside, I seem to have bounced back quicker - hurrah! I with you on the hot flushes, horrid things. Have you taken a look at the hormone therapy board https://forum.breastcancercare.org.uk/t5/Hormone-therapy/bd-p/4438 ? There might be some tips there that will help. I'm doing pretty much the same things you are, though haven't yet invested in a chillow - is it good?
I had my third FEC yesterday and made a last minute decision to ditch the cold cap. It made me feel physically sick when I saw it waiting for me and to be honest I've lost so much hair I don't think it's really working for me. This made the administration of the FEC so much faster as well as the PICC line which I had inserted last week. However I got a massive headache straight away and felt worse afterwards than on previous two. I think I will get my head shaved next week.
Belle - glad to hear you are coming through the dark side now.
Alex 2016 - my hair started falling out on day 20 after first FEC but that was with cold cap.
The weather has reverted to default summer holiday where I am now - grey, windy and drizzly. A bit easier for coping with the hot flushes and night sweats which added to other side effects are driving me nuts. Any tips? I have a 'chillow' and a fan going in the bedroom all night and am still taking evening primrose oil as advised by my onconlogist.
I hope you all have a good day.
I have my third FEC tomorrow so feeling great right now...!!!
I had a nurse review yesterday and talked to them about my sore vein. I thought you all might be interested in what they said. The pain can either be caused by inflamation around the vein or 'cording', which is (I think) where little strands of tissue (the 'cords') inside the vein cause it to twist and therefore tighten. They think I have the second one as it mainly hurts when I stretch my wrist or elbow.
They agreed that moist heat and the stress ball could help cording, and also suggested massaging it (eg with almond oil). I asked them about the hirudoid cream and they said that that would be best used for inflamation and is unlikely to have any effect on cording (though there's no reason not to have a go).
I asked about having a PICC to avoid further cording but they couldn't fit it in before my last FEC tomorrow and they told me that I'm unlikely to get the same issue with T because FEC is far more abraisive to the inside of the veins, whereas T would only cause inflamation, not cording.
Hopefully this is helpful!
On a completely different subject, I found some lovely headwear from 'seasalt' (a company based in Cornwall). They're basically just cyclinders of stretchy cotton that you wear a bit like a headband, but the fabric hangs down at the back so it completely covers your head. They are really snug to wear and the dseigns are nicer than a lot of the headscarfs I've seen. You can get them online but I found them in our local department store (Fenwick).
Right, off to enjoy my last few hours of feeling human!
How is everyone?
I feel like I'm beginning to emerge from my hole and start to feel a bit more human again after several days of feeling dreadful. However, nothing too dreadful has happened.
How about the rest of you?
I've just got a couple of new head covers which I'm finding really good so I thought I'd share!
They're called 'handybands' by a company called 'SeaSalt' and are basically just a tube of stretchy cotton which you can wear on your head with the end of the tube hanging down the back or tied in a knot (they call it 'legionnaire' style!). They fit really snuggly and the designs are a bit different to what you get on headscarfs or beanies.
I particularly like them because they're nice and cool for this weather and they're quite trendy designs so they don't look too 'chemo-y' when you wear them (though I'm in my 40s so possibly too old to comment on what might or might not be trendy!! ).
This is the link if anyone's interested: https://www.seasaltcornwall.co.uk/all-accessories/womens-accessories/handybands
Though I actualy came across them in our local department store (Fenwick).
hope you are doing ok today - Despite being on the steroids the truck is already starting to hit me -
And Leo, my cat - is of course in sympathy and is also playing 'dead', lol!
Hirudoid is the first cream I tried - and I found it helpful, too - until the chemo nurse gave me the Hydrocortisone - so now I am using both! - Well - something has to work!!!
I've just clarified with my oncologist (lucky enough to have him as a friend!) and he got his creams muddled - I'm so glad you mentioned Hirudoid as that's what he meant too! My life in his hands!!
I was advised by BC nurse to get Hirudoid gel from GP for vein ache. Been applying it for past 4 days and vein ache has improved, though underside of arm is still tender on stretching. At night i apply it and then lay my arm on hot water bottle - am hoping it helps before FEC 3 on Friday.
Hope alls good with all
I know several of us have been struggling with sore veins and I can't remember if I've posted this link or not but there are some good ideas here: http://mylrh.org/wp-content/uploads/2009/09/Vein-Care.pdf for improving vein condition. I've been using a ball of socks rather than a stress ball - works just fine.
I haven't been able to track down what's in the cream the complementary therapy department gave me but having been using it religiously for 10 days now I can't say I've noticed any improvement. However, my oncologist recommends using Hirudoid cream, available on prescription and until you get hold of that, voltarol/ibuprofen gel kept in the fridge for added relief. Just whacked a load on my arm to almost instant relief. Not kidding myself it'll last long but I'll take what I can get!
Hope that helps,
It was fine, a couple of strands fell out while I washed it, but you don't wring it or anything just pat it dry then put it on the stand. It falls back into the style by itself. You can always use hairspray on it if you're not happy with how it ends up! It just looks a bit more natural/scruffy (but good scruffy!). x
Hi Lucy Lu,
Just wanted to say thank you for your tip about washing wigs. I washed mine and it looks so much better, much less bouncy and glossy and just that little bit more scruffy - ie more like my normal hair!
We went out for our anniversary last night and it was the first time I've really worn it in public, so it was brilliant to have it looking more natural.
Love that picture Sue! The chemo went fine, the nurse managed to use a different vein and a hot water bottle, which helped a lot...My wrist feels heavy today but not sure, will see how things progress and if pain develops again I will consider the PICC for the last 3 treatments. The nurse did tell me that T is easier on the veins than FEC, but can hit you in other ways...
Well done on treatment 4 Sue, you're nearly done! Great stuff, have they told you if they're dropping no.6? Brilliant if they do!
Hope everyone is coping with the balmy weather! I've found fringe wig and knotted headscarf the best option if I have to venture out, I can't cope with a wig when it's so warm!
I was prescribed 6 x FEC with the possibility of the 6th one being dropped.
Like you my veins became sore after treatment 2, so requested PICC before chemo three. They could not fit me in - the only date they had was actually post my 4th chemo date. So I declined, as for one chemo it does not seem worth the effort and I would have to cope with number 3 and 4 anyway.
They did not suggest to change the regime. I had a few challenges when doing no 3. Had my bloods taken yesterday and my vein became swollen and red on the lower arm. Tried everything in the book, so to speak - no joy. Chemo 4 was given today. Two goes before the cannula went in - was actually one of the best experiences I had with these things so far, lol - but administration........very painful and therefore much, much slower than usual. Lots of hugs from the administering nurse though - so helpful and lovley.
I really wish that they would have offered a PICC line as standard - I would have experienced so much less pain -
But got through it - so here is to 3 busy days on steroids, before I fall off my little perch - flat onto the sofa
Update: just been given another code by Living Better With.... which gives anyone who uses it £5 off anything. Add it to your basket at the end. It is BCC5.
Home now - it wasn't as bad as anticipated but it did hurt a bit. I think I've just become over sensitive. My PICC line cover turned up just before I left for hospital. However I ordered the wrong size. Great customer service though from Live Better with .... as I have just called them and they are sending out the right size free of charge, via first class too so that I can have it for the weekend (hopefully, Royal Mail!).
If anyone wants to order anything I have a voucher code which you can use with your first order over £5 (not sure what discount you get with it). https://livebetterwith.com/ the code is LBW6.
I'm off to have PICC line inserted this morning. Bit nervous having read the literature supplied by the hospital. Also told it could take up to 4 hours as they have to x-ray to make sure it's in the right place (if not they have to remove it and start again - yikes!).
Has anyone had one recently? Is it as bad as I'm anticipating?
I had surgery and 3 lymph nodes removed on right side and I was told definitely not to use the right side veins unless in an emergency. Not even to have blood pressure done on that side. I have to have the rest of the lymph nodes removed on that side following chemo. So it's good practice for me to not use that side. PICC line going in because it's been a real struggle to canulate me in the two FECs I've had so far. (Having 3 FEC and 3 T - well that's the plan at the moment anyway).
I've ordered a PICC line cover from a site called Live Better with Cancer (would rather live without it thanks!). https://livebetterwith.com/products/care-wear-picc-cover/ It's a bit expensive but I'm saving money by not going out etc. They sell lots of other things that might be useful.
I've also woken up with an eye infection this morning, something I never get. Which means I can't wear my contact lenses or make-up. This combined with very thinning hair makes me feel even worse. Never knew I was so vain. I have bathed the infected eye with cooled boiled salty water and will ask the chemo nurses if there is anything else I can use.
Have a good, hopefully cooler, day everyone. xx
Hi ladies, I'm due to have my 3rd chemo this morning, have found my veins to be sore this time. When I saw my oncologist yesterday she thought it might be best to change my treatment from 6x fec to 4x fec and 2x T has anyone else had their treatment altered? I'm a bit worried by this as Fec is the devil I know and T is the devil I don't!
I had axillary clearance on left - so can't use that arm and two lymph nodes removed on right - so they have to use my right arm - as long as you haven't had a clearance, its ok to use.
I would definitely NOT use your right arm. Breast Cancer Care's leaflet advises against using your affected arm although it only states that following sentinel node biopsy 'there may [only] be a reduced risk':
The American site BreastCancer.Org is more explicit quoting research that puts that risk at between 5 & 17% of women going on to develop lymphoedema. For a full axillary clearance the figures quoted are between 20 & 53% so while reduced, it is still a significant risk:
I also had a similiar conversation with my chemo nurse which flummoxed me a little so I called the Breast Care Nurses to check this out. They re-affirmed that I should avoid using my lymph node removal side and stick to the other arm. If all else fails, then explore the possibility of having a PICC line or some other permanent access line put in.
Hope that helps,
I'm on a AC cure (not sure what the difference is with EC) had exactly the same reaction. The weekend after the treatment was fine, but day 4, 5 and especially 6 were yuk. I'm now a week further and feel amazingly good - there is hope! hang on in there, it does get better.
Just popped over from July starters thread.
Sonya - sorry you're feeling so crap. Hugs.
LucyLu - what did you use to wash your wig? I ordered some Dimples shampoo, conditioner, and a couple of sprays. I'm actually going to get a fringe cut in to mine this week so will wash it after that. I know exactly what you all mean, I don't wear make up usually and the wig just looks "wiggy" shiny and neat. I constantly fidget with it when out. I hope it feels more comfortable after I've had it cut.
I lost loads of hair in the shower this morning. I said at the start that losing my hair wouldn't bother me as my thick, wavy hair is unruly most of the time anyway, but it actually is bothering me. Oh well, suppose it means the poison is working.
Ladies, can I ask your opinion on something please? I had surgery and 3 lymph nodes removed on right side. I can't honestly see my veins holding out on my left arm for much longer. My chemo nurse said that as I only had 3 lymph nodes removed it's fine to use my surgery side, however I am reluctant to do this. What do we all think?
I'm so sorry you're feeling so low, you sound just like I felt a week ago after my 2nd FEC. It's so difficult when the drugs take away your ability to cope as well, isn't it?
My husband was really surprised at the depth of my feeling about losing my hair, I just think it isn't the same for men and they can find it really difficult to understand how devasting it can be. To be fair, my husband's been steadily losing hair for the last 20 years without any hope of it ever coming back, so perhaps I should just be grateful that my loss is temporary!
I know exactly what you mean about the wigs. I'm someone who rarely wears make up unless I'm going out somewhere nice, and I've found that my wig just looks to 'perfect' - so I look like I've spent hours doing my hair and haven't bothered with my face! I've decided that I'm only going to use it for evenings out and stick to a beanie hat with or without a headscarf on top for daytime.
A couple of things to remember. Firstly, the chemo drugs make it really difficult to cope, they attack you emotionally as well as physically. So the way you are feeling now will improve - I'm sure you know this in your head, but it can be difficult to persuade your heart that things will get better. Secondly, the great thing about this forum is that we all to have a place to vent and get support, so you don't need to apologise.