*** NOVEMBER CHEMOTHERAPY CHAT 2019 ***

I'm after some advice please...

As someone who luckily had no real side effects from EC my journey so far on Paclitaxel is not as smooth.  I was warned that I may get, and indeed do have,really achey hips, legs & feet in particular which is making me walk and feel like I've just done a couple of marathons with no warm up.

I was told to expect the above between days 2-3 post paclitaxel (am currently 3 days post). Am taking zapain ( codiene phosphate/paracetamol) as provided by hospital but (as is often the case for me with pain killers) doesn't appear to be having any impact.

Am off for a bath now.

Is there anything else I can/should be doing to reduce/manage the ache?  Seems that when I move around its better (but that could be in my head! Or making it worse!!) and its causing upset sleep pattern (am usually a good sleeper).

Thanks

Sam X

Hi Sam

I've just finished 12x paclitaxel (which seems to be called cillit bang on here :))) and carboplatin weekly.  I didn't particularly get achey feet etc. but a lot of neuropathy in feet and in fingers.  The aches and pains could be coming from Zarzio injections - do you have them?

I didn't feel like exercising but found that when I forced myself to go out for a walk, I did feel much better afterwards.  Baths seem like a good idea although it can be tricky with a picc line.

Are you on steroids because they can make you sleepless?  I used to get depressed when the effect of the steroids wore off (days 3-6).  Again, if I forced myself to go out and walk (with a companion if available) I felt better afterwards.

Sorry it's not much in the way of advice but take heart, it will be over eventually, even though it's a hard slog.  

xx

Blackcat20

Well done on getting through your last chemo :-) I can also nearly see the light at the end of this first tunnel, I have 2 more doc/her/per to go and my last one will be 27 December. Hopefully if any side effects stay as mild as they have been, I know I can cope until then. I will also have the 14 extra Herceptin & perjeta but feel that life might be a bit more back to normal then like you say with not having to worry about infection.

My surgery should be around early Feb so should hear sometime in December about going back to see the surgeon and any further scans required etc. It will feel like a bit more progress along the way.

Best wishes for your surgery in December and hope all goes well :-)

xx

Blackcat20,

Fantastic news and congratulations at reaching the end of chemo treatments - bar the  SEs ! Must be a good feeling. You have coped so well all the way through and sure you will take next step in your stride. 

All the best for surgery tomorrow- think I remember it’s tomorrow anyway. 

Great to hear ladies are powering through their treatment. I am due 5 of 6 but not sure if I will be strong enough to get it this time. I have had a miserable two weeks as days after my first Dosetaxel Herceptin Perjeta I developed a chest infection and two courses of antibiotics later I am just beginning to feel a bit better. So beware picking up infections- makes things a hundred times worse. One advantage I guess I was so out of it because of infection I didn’t seem to have much reaction to chemo apart from quite distressing diarrhoea which was probably the antibiotics. 

All the best to those starting treatment , on treatment and strength to all nearly finished.

Jojodot

Hi everyone. I've been told I need to start chemotherapy shortly.

I was wondering if anyone got their haircut before, and if so how short does it need to be? Thinking of a lip level bob with maybe shorter layers and am going to try the cold cap. I've got long hairo cant face going really short straight away

Xxx

Hi Cheeboe

welcome to the group , know you'd rather not be here but best place to come for support and advice .  Plenty of support will be along shortly .

Good on you it was one of the first things I did ..took control if when my hair would go shorter . it is all a matter of choice I decided not to cold cap .I had already had masectomy and I think I just decided hair wasn't a problem it would Grow back . Also winter coming so gag on anyway but like Zi said personal choice not to try cold cap .

I went from just below chin bob to pixie ,so liked by everyone my wig is pixie lol should have fond it years ago !

From then on Inhandled hair less . Only washed when needed then only one shampoo usually jug of warm water to rinse then finger dry .

less product and def no hairdryer etc to protect hair . EC the chemo I'm on is known to cause hair loss but Zi find managed to keep it til shed towards end of no 2 then in middle of 3 . Chose not to shave  but cut close to scalp. Didn't want stubble . I'm now day 5 of no 5 and have very whispy hairs that appears to have stop shedding and started to grow hence a bit of combover going on .So haidresser will take it to no1 shave to get shape back in

I've worn beanies  with headbands to match clothing ..nice bamboo  beanies on Amazon .

hope all goes well for you 

take care 

margaret x

Cheeboe

My hair was short & fine anyway so I decided not to cold cap, was told it might not be that effective anyway for hair like mine.

It will be good to be prepared as mine started to shed about 2 weeks after 1st EC. Hubby shaved it for me the week after my second treatment and although I didn't like it, this was actually easier to cope with than it coming out in clumps in the shower.

Good luck as you start your treatment.

xx

Hi Cheebo, I have just had my first round of chemo (4 days ago) and like you have always had long hair so being told you will loose your hair is devestating. I decided to have mine cut to a chin length ‘messy’ bob, in case I don’t feel like brushing it. It helped me be in control as I was scared of the how long the hair would take to come out and I wanted time to get used to it. It hasn’t started falling out yet but I do feel more prepared now. I have bought two wigs a shorter one and a longer one also some little bamboo caps for when I can’t be bothered. To be honest I have felt so ill these last day or so that I don’t really care what I look like. Just want to be left alone, hopefully it will pass and I might even feel like putting a bit of lipstick on!! Life sucks sometimes but as others have posted, try to be strong and positive and remember that the medication making you unwell is actually going to keep you alive, sending love, 

Cheeboe I went all my life with short hair, wouldn't grow till I hit the menopause and I discovered it wanted to grow, when we went to the arctic on an expedition, so I let it grow.  It went down to my waist over several years, so when I knew I was going to lose it, I was devastated, as it's now fine and I don't know if it will ever grow back as long, but I had it pixie cut and friends said it suited me better anyway, so my mum was right all along, short hair suited me better.  It's very thin now all over, but can't be bothered to get it shaved and stubbly.  I use QV to wash in shower once a week, then put a turban on and let it dry naturally, less stress.  Didn't want extra time and discomfort using a cold cap when it's not guaranteed to keep the hair anyway.  My wig is long, but not used it yet, I just use a bamboo beanie to catch what is coming out instead of discovering it all over the place and wear a warm hat on top when I go out.  Feel so ill and worrying over hubby, I can't be bothered with my appearance re. hair any more, though I am keeping myself clean and presentable otherwise, I must add.

When/if it grows back, I will keep it shorter in the future, as the hairdresser at the bottom of our road said to do, she seems to know best.  I've not used her before, didn't have it cut for years, but she seems to be a good hairdresser, so I'm going with her recommendation for when it grows back next year.  I'm day six into my third FEC treatment and still feeling pretty ill, want to go visit hubby in the Oncology dept., but I've managed to coerce his friends into visiting whilst I'm not well enough to catch two buses to see him there and two buses back again. TAxis cost me £15 each way, so rather expensive, unless I really have to for treatment and am feeling ill, then I have to pay out.  Got to go in Wednesday for my PICC line to be redressed, so will plan to see him then.  I phone most days and speak with him on their mobile phone in the hospital anyway.  All the best.

Thank you Jojodot...yes surgery in the morning, doubt I'll sleep much tonight. I managed to take my caravan away for 3 nights (back to my home town) and met up with all my friends who had a surprise afternoon tea for me...it was lovely...and saw my youngest daughter. Loved being away in my van after all these months looking at the same 4 walls. Been feeling so much better 4 weeks post chemo but have developed achy joints and muscles which I think might be the Herceptin. Hope everyone here is coping ok...I'm off to bed to scare myself senseless about getting this bloody wire in!!x