June 2016 starters?

[haz25a]

Hi Alex,

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

[Alex2016]

Girls, another query. For some reason, I have taken a notion for Ritz Crackers and Philadelphia. Do you know if it is advisable to eat Philadelphia while receiving chemo. I wasn't sure, with it being a soft cheese. I remember reading somewhere that a "pregnancy diet" should apply which would mean no soft cheese, Anyone had it and still ok ? Lol

[Sue H-S]

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....

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...

Hugs

Sue xxx

[Alex2016]

Thanks Belle. And on your advice previously, I now have lots of headwear and fringe at the ready lol. I have a wig too. It's so hard to imagine what it's going to be like until it happens, as I have been experimenting with styles, but hard to do when you have so much hair underneath. Part of me is actually wanting it to go now to get it over and done with and adjust. A bit like chemo, the anticipation and worry you build yourself up to is nearly worse than the reality. x

[Belle]

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?

B x

[Alex2016]

Girls, thanks for advice re hair loss. I think the first day it starts to shed, I will phone my hairdresser to arrange to get it done as soon as she can. She very kindly said, she will come to my house to do this. Thanks again, so good to get advice from those further on in treatment. Hope everyone has a good day. X

[popkit50]

Morning everyone,

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.

xxx

[Anon16]

Hi Alex. How are you doing after first fec?

I cut mine into a bob from very very long after 14 days just for a change and just in case. it started falling out after day 16 and by day 18 I had to shave it. The bob cut was a good idea as it got people saying oh your hairs different and the shave was good because I couldn't stand the shedding. I started wearing a wig at day 21 but mainly wear head scarves now which I'm loving actually. There's so much choice and its been cool with the weather plus people just think it's a fashion choice not that I have cancer (possibly as not lost the brows or lashes yet).

It's incredibly tough at the time but I have come to accept it now. We are all here for you whatever happens. I didn't cold cap.

Interestingly the hair underarms and lady garden also went but the leg hair went and came back very slowly. Think we are all having different experiences though.

[Charissecarson]

Hi Alex
People have different experiences. I know some ladies started at 11 days in, mine didn't start until day 18. Once it starts loads will fall out over just a couple of days so it depends on how much hair you have to start with as to how thin it will become after the first cycle. Most people can't stand the hair falling out or it becomes so thin that it looks awful so shave it at that point but it's really about how you feel. Good luck. X

[Alex2016]

Girls, in I received my first FEC a week ago today. Could I just ask on what day your hair started to shed? And also, did you find it better to crop it immediately, or does it take a week or so to shed, so maybe get a few more days out of it?
Thanks in advance. x

[Belle]

Hi Sonya,

I'm booked onto a Look Good Feel Better course on Monday so I'm really glad to hear you had such a good experience.

Have you come across Queasy Drops? The Live well with Cancer website sells them. I've found them quite helpful to have in my pocket for those moments when feeling sick sneaks up on me.

Congratulations to your son as well - lovely start to summer holidays 🙂

B x

[Belle]

That's really helpful, Bagpus, thank you! I'm glad to know that all this is worth doing 🙂 I have another 3 FEC to get through and no hope of a PICC or any other line because of allergies so am desperate to keep my veins working! I think my issues are more inflammation at the moment but will carry on doing everything.

B x

[sonyacheet]

Hi ladies.
Hope you are all OK?
I'm doing much better than a few days ago. I'm still having a few sick feeling moments. But I haven't actually been sick so that's a positive.
I went to the look good feel better course today. What a lovely experience. The ladies were so lovely and helpful and went out if their way to help us all. I got a bag full of skincare and make up products which was really kind of them. I really enjoyed it.
All in all its been a really good day. As my son had his leavers assembly this morning and he was awarded a special award for working so hard and achieving great results in his SATs.
Love Sonya xx
Xx

[bagpus]

Hi,

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!

x

[Belle]

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?

B x

[bagpus]

Hi all,

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).

x

[Sue H-S]

Hi Belle, 

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!!!

Huge Hug

Sue xxx

[Belle]

Hi Rosie,

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!!

B x

[RosieFlower]

Hi B

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

xx

[Belle]

Hi 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,

B x

[bagpus]

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

[Charissecarson]

Once you've finished washing it give it a shake loosen up the strands and then put it on a wig stand a use a wide tooth comb or brush to roughly put it into the shape you wear it then leave it and brush it when it's fully dry.

Xx

[Anon16]

Was it easy.to wash?im worried.about doing mine. I have the proper shampoo and instruction but just worried the hair will fall off or look rubbish. Did you brush it when wet to style?

[bagpus]

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.

Huge thanks!

[kalimera]

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!

xxx

[Sue H-S]

Hi kalimera,

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

                                                   

Sue xxx

.

[Emma111]

Glad you are home ok. It's done now ..... one less thing to worry about and will make treatment easier. I'm sorry it hurt ...... well done for being brave and still doing what scared you xx

[popkit50]

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. 

K x

[popkit50]

Thanks Emma. 

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. 

K xx

[Emma111]

Having a PICC line is nothing to fear I promise. I've had mine since day 1 on 22 June and it will make your life easier. Please don't worry. I know all of this is scary full stop but a Picc line is nothing to worry about xx

[popkit50]

Hi all

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

[kalimera]

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! 

[RosieFlower]

HI Hazel.

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.

Rosie x

[haz25a]

Hi Belle,

Yes, I agree. I would rather not risk lymphoedema. Interesting that you had a similar conversation. Obviously it's easier for them to just use my right arm but I'd rather have a Picc line in if need be. Thing is, I'm only having four TC chemos, had one and my herceptin is given by injection so the Picc line wouldn't be in for that long.

Thanks for that, I've definitely made my mind up and will be quite assertive (I usually am in general) if I have too.

Cheers.

Hazel. x

[Belle]

Hi Hazel,

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':

https://www.breastcancercare.org.uk/information-support/publication/reducing-risk-lymphoedema-bcc15

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:

http://www.breastcancer.org/treatment/lymphedema/risk_factors

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,

B x

[judith63]

Hello Sonya,

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.

Big hug

Judith 63

[haz25a]

Evening Ladies,

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?

Best Wishes

Hazel. x

[Millasmummy]

I haven't washed mine yet, thanks Lucy Lu I will give it a go.

Sonya, I felt very much the same, zombie like. My worst day was day 6 when I slept for 2 hours in the day and was so cold, and just say staring into space. Couldn't even hold much of a conversation. But I did pick up after that, you will slowly in the next few days come back to your normal sell and energy level. Hang in there and big hugs xx

[Belle]

ooh! Top tip, Lucy Lu, thank you 😄

*scurries off to do some washing*

B x

[Lucy Lu]

Ladies have you washed your wigs yet? They really are much better once washed. Mine seem to be less big and Wiggy and also less perfect. Keep going ladies. You are almost there

[Belle]

I am so sorry to hear you're feeling so rough, Sonya 😞
I found my second cycle of FEC much worse than the first in terms of the exhaustion so can relate to that very much. Also, I know exactly what you mean about the wig. Mine definitely feels 'wiggy' and overdressed. And way too hot. Can't go there at all in this heat! I get that nasty throat feeling/taste. Mine feels really slimy although there's nothing to see.

I hope you feel better soon,
B x

[sonyacheet]

Mornings are the worst. Wake up with the most awful taste in my mouth. It took me about 3 hours to come round this morning. It was awful. The hubby woke me up to do a job that really he should have done himself. I've told him from tomorrow to just leave me x

[sonyacheet]

Hi ladies.
Thanks for your replies
I'm 5 days post 2 EC. I was feeling OK over the weekend but it's like a zombie has taken over. I'm hardly talking. Hardly moving except to eat or to feed the children when required. At least I don't have the sickness of last time with the heart burn xx

[Millasmummy]

Hi Sonya, sorry to hear you've had a bad few days. I also felt tired and weak, mostly between day 3 and 8 post treatment. Which cycle of FEC are you on?

I can totally empathise with the wig experience too, I hardly wear mine as feel it's so big and wiggy compared to my real hair. The only time I did wear it was when it was a cooler day and I popped to the shops for an hour, I did feel more invisible with my wig on rather than my hat. But personably I prefer my hat for comfort. I got my husband to try my wig on so he could experience what it feels like and he admitted it was strange. I guess the more we wear our wigs the more we"ll get used to them.

Take care xx

[bagpus]

Hi Sonya,

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.

xxx

[sonyacheet]

Hi ladies.
The last couple of days have been so very hard. I don't feel ill I just don't feel right. I'm tired and weak. That awful nasaly taste at the back of my throat won't go away.
The hubby persuaded me to go for a walk and I wore my wig. I have had a bad couple of days coming to terms with the hairy egg look. My own and that isn't against anyone else. The wig makes me feel overdone and perfect. Does anyone understand what I mean? I feel over dressed because it is so shiny and clean and it's hard. I'm wearing a scarf now as it feels better in the house. I feel that my hubby may be a bit cross with me because I found it so hard. He probably isn't but it's hard not to feel that way. We had a meal and I chose something just to keep him happy. It was far too much too soon. Im going to just relax for the rest of the day now. Sorry just wanted to say it out loud without causing an argument.
I hope u r all doing OK.
Sonya zx

[Belle]

Yes, Millasmummy, I mean your chemo arm. I've had lymph nodes removed from my left arm (left breast cancer too1!) so can't use that one at all.

Will think of you tomorrow,
B x

[Millasmummy]

Hi Belle, thanks for tips re: veins. When you say affected arm do you mean the arm you have the chemo in? My BC is in my left breast and I always have chemo in my right arm. Oncologist said I can choose the left if they can't find a vein or it hurts but probably best to keep to the non cancer arm.

Yes halfway through it is going quite quickly.

Hope all goes well for you tomorrow X

[Belle]

Hi Millasmummy,

Sorry to hear about the ovaries. Pesky things. I had a pre-cancerous cyst removed with my ovaries when I was 34. The new info is the discovery that my Mum had ovarian cancer - I know, how could I miss that, right?! I knew she'd had a cyst remove at hysterectomy but had been told it was pre-cancerous. In my befuddled state immediately post-diagnosis I forgot all about this. Fortunately my sister is more on the ball and at her screening she was asked to track down our Mum's histology report. Which she did and it turns out it was cancer. So, I'm now being referred for genetic screening. Hey ho!

Bloods & onc appointment done today. I mentioned my sore veins to my oncologist and he's written me up for some cream to rub in - no idea what it is yet as I won't get it till tomorrow but it might be worth mentioning? Also, I read somewhere, it's worth using a stress ball to squeeze to 'exercise' the veins in your affected arm. I don't have a stress ball so I'm using a ball of socks. Seems to have the same effect. Doing it as often as I remember!

All the best for tomorrow - just think, half way through by tea time!

B x

[Millasmummy]

Hi Belle, yes I went for the bald look as soon as I was in the car and home! My hair is still very patchy at the back.

Yes I am having my 3rd FEC on Thursday morning too. I went to see my onc and had bloods yesterday. I am also now having to see a gyno as two cysts on my ovaries have showed up on an ultrasound, so they are just wanting to investigate those now and check to make sure they are not serious! I mean seriously is this a wind up? So I have appointment before my MRI breast check next week, great!

Have you found out some medical information about family that you didn't know before?

I can't believe we are having our 3rd FEC Thursday, it's going quickly. I am worried about my achey veins in my canular arm, I hope they can find one on Thursday. I was looking at my veins today as it was so hot they were quite prominent, but by Thursday you can bet they'll have done a vanishing act!

XXXX