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May 2017 chemo starters

Mai7
Member

Re: May 2017 chemo starters

You are absolutely right Treehouse, smokers should not be smoking right outside the hospital where it can blow back indoors and where patients are trying to get "fresh" air.  Unfortunately their addiction often takes over rational thinking including courtesy towards others. Thank goodness it's now banned indoors and you no longer have to put up with cigarettes being waved in your face or caught on your skin and clothes. It's a valid rant you have there! Are you still  in hospital since the transfusion or back home?

Trisha69
Member

Re: May 2017 chemo starters

Good luck. I start 25th and Herceptin
Have to have heart scan day before. Let me know how u get on. Big hug
AnnieA
Member

Re: May 2017 chemo starters

Morning ladies, I've just been for my bloods ready for cycle number 4 tomorrow. It will be my first taxotere and I've just been informed that it's a lot harsher than the EC. That there's a risk of a reaction as the drug is being administered and that the fatigue and bone pain is worse. It's fair to say I'm feeling quite anxious now πŸ˜• xx
treehouse
Member

Re: May 2017 chemo starters

Morning all. Rosie, how are the nose bleeds? I was eating a fresh papaya everyday in week 3 to boost platelets no idea if it was the reason but platelets went up from 50 to 145 so I willing to suggest it. Tropical fruit salad and the kids ate lots too it was good for everyone x

I have woken up with a right bee 🐝 in my bonnet about smokers who sit by no smoking signs right outside hospital doors. Does this happen everywhere or just here? I want to shout at them. 'I am already fighting my own cancer don't give me yours ' I just need to step outside for fresh air but it is disgusting.

Sorry rant over x breath 😷
maggie aitken
Member

Re: May 2017 chemo starters

dont know about amazon, but instead of a pencil I have a wee powder eyeshadow (brown) with brush which works really well,  you can be as defined or otherwise, easy to apply, and if you overdo it, removal much easier!and as I see that my hair regrowth is going to be absolutely white, which will be lovely, I may invest in a grey powder shadow.

WolfEE
Member

Re: May 2017 chemo starters

Behind the pharmacy counter at Tesco they do a small pot of Epsom salts for Β£1.50 and boots sell a version of Epsom salts that's actually for drinking (think maybe a purer safer grade than the bath ones) and that is for constipation I'd also forgotten about them helping with constipation.
WolfEE
Member

Re: May 2017 chemo starters

Epsom salts are the best I was having one bath and two foot soaks prior 2 diagnosis and I truly believed I benefited from them in so many ways I was buying big buckets off amazon. However as with almost eveything I was worried how it would act with chemo and blood tests etc so as with all my pleasures I stopped because of treatment. Now though maybe I'll start again?????
A new pleasure I have 2 give up is cinnamon I put cinnamon in my smoothies, in my coffee and I've been reading it thins blood or does something and you shouldn't have if you have certain problems inc blood clots!!!
It's resiculous eveything has a consequence!!
Raitchr
Member

Re: May 2017 chemo starters

Thanks Mai7 re Epsom salts. I had read that somewhere too and used it this morning, it has eased it quite a lot. I tend to use Epson salts every so often anyway, it is good for constipation too as it lets your body absorb minerals especially magnesium, if you can't manage a 20 mins soak then used in a bucket as a foot soak, your body absorbs as much as it needs. Sorry I forgot to share this earlier talking about constipation, I just remembered, silly chemo brain.

AnnieA
Member

Re: May 2017 chemo starters

Katie I'm on treatment this week, Wednesday for me. Chemo number 4 but taxotere number 1 πŸ˜• x
Mai7
Member

Re: May 2017 chemo starters

Rosie, hope your platelets are ok. I know what you mean about getting ready to go out, it's like doing a fancy dress just to look "normal", I have to draw in my eyebrows now as they look a bit thin, luckily there is enough hair to use as a guide and fill out the gaps! Wow, the BRCA1 gene really is nasty but thank goodness science is progressing to be able to test this and give options, as hard as they are. I'd be offloading hormonal equipment like someone in a hot air balloon who wants to rise!  I haven't been tested but doubt I have the gene as there's no strong family history, however, since having the end of my cervix removed and now BC I'm thinking less is more with the hormonal equipment!

 

Raitchr, the nails story ...... fingers trapped in a door. Sounds a bit unpleasant. I forgot to mention before, on the March starters they recommended putting Epsom salts in your bath water to relieve pain. 

Mai7
Member

Re: May 2017 chemo starters

I'm on treatment this week Katie, blood test tomorrow, Oncologist Weds and (all being well) treatment on Thursday (1st Docetaxol) . I'm going to be able to drive you crazy this week as I can call it.....Chemo no.5! If that ear worm had gone, you'll now have it back again!  My Son is home from Uni for the summer, yippee! It's so nice having him around again. (I do remember how hard the summer was when they were young - finding ways to keep them occupied and trying hard to make the summer fun can be exhausting)

 

I know what you mean about discussions outside of this forum, sometimes I've got so used to being able to discuss anything I forget that people in the outside world find it disturbing, but then, we all have bodies don't we?  Sometimes people wish you well at the beginning and then you don't hear from them again, I think people just don't know what to say but it's easy for us as we understand each other. We know what it's like living with hope, fear, statistics, sore bums.....

 

Anniej, aaaahhh, you rang the bell!  I'm having serious bell ringing envy! πŸ””πŸ””πŸ””

katie11
Member

Re: May 2017 chemo starters

Well done anniej. Can't wait to ring that bloody bell! Lol x

Just back from picc line. Wasn't as bad as I was expecting. Suppose it just takes time getting use to the dangling thing! And he did my bloods for Wednesday so saved me a job tomorrow.

Treehouse don't worry about your friend. She ll be fine. You do feel like you have to protect others when discussing things sometimes which is why this forum is fab to allow you to say exactly what is on your mind. Anyone else on treatment this week apart from me and rosie?

Think I'm gonna have a cuppa and biscuit before school run! God are they really going to be off for 6 weeks! Eeeeek!!!! Quite like or liked should I say my peaceful days x
treehouse
Member

Re: May 2017 chemo starters

Glad your family are getting informed to make choices. I have my kids and am happy for surgery to remove anything at risk. Just want a break and feel normal for a while before we start all that too.
Sometimes this is bloody hard and you just want a break for a while. Reminds me of the kit Kat advert πŸ˜›
Rosie65
Member

Re: May 2017 chemo starters

Treehouse -  these things do get a bit distorted over text. I always feel that people really only want to hear that everything's going well and don't want to hear about anything negative

 

My niece and daughter had their blood tests done for BRCA1 and were told that now they've identified the gene in me the results will come back more quickly as they know what they're looking for. They will do breast MRI from age 30 and suggest ovaries removed in their 40's if they have the gene. There isn't any reliable screening for ovarian cancer. Will also remove breasts in their 20's if they want that (my sister had bc at age 29) So now they just wait and see. For my son main risk is 50% chance of passing it on to a future daughter.

 

I have another sister who is older than me and she hasn't had any risk reducing surgery and hasn't had test yet. I think she thinks that she has escaped inheriting it but it really is 50/50 and we could all three of us have it. But I guess each person has to make up their own mind

 

I had ovaries out when I was 48, am 51 now, it's just day surgery, and I did feel great peace of mind when it was done, so much so I forgot about the breast cancer risk lol

Rosie65
Member

Re: May 2017 chemo starters

Morning ladies, hope everyone is feeling ok this week

Had a lovely weekend and also felt quite normal. My son and his girlfriend stayed and we all went out for a big family meal. I still feel strange getting dressed up and then putting the wig on, almost like I'm not really me.

 

Annie j really pleased for you, that must have been a great feeling

 

Think my platelet levels must have dropped - I keep getting nosebleeds

treehouse
Member

Re: May 2017 chemo starters

Oops I think I just upset a friend by text. She was trying to be positive saying I was nearly there and once I had beaten it I would never have to do it again blah blah keep strong up yours cancer etc. I then explained with brca1 abnormalities there was an increased risk of return and ovarian etc. She was very apologetic. I feel bad that she thinks she upset me.
Note to self hold those conversations face to face not by txt.
treehouse
Member

Re: May 2017 chemo starters

AnnieJ so happy for you 😌
treehouse
Member

Re: May 2017 chemo starters

Morning. Mostly feeling good but woke up at 5 for a pee and opened the door causing massive pain in my hand. Really worried about the nerve damage. It is like an electric shock and makes me squeal as it is not constant.
Raitchr
Member

Re: May 2017 chemo starters

Hi Annieij, thanks for the advice re sun. My chemo nurse just said use at least factor 30, I use 50. I was tanned before chemo started and don't burn as have mediterranean olive skin. I haven't sat out in the sun recently and will be more careful.

 

My fingernails hurt yesterday, a bit easier today. They feel like they have been trapped in a door and Onco said to expect this. He said they would slightly reduce next dose if uncomfortable. Tiredness seems to have eased today, did spend much of yesterday resting on the bed. Mouth less sensitive, just a bit of back ache this morning. 

 

Hope over the worse now.

 

Heather

Mai7
Member

Re: May 2017 chemo starters

We had a lovely walk out today through the woods and across a local golf course and sat outside for a club sandwich. It felt like normal life!

 

Treehouse, you seem to be getting your bounce back which is good to hear.

 

Hope everyone is doing well.

Anniej
Community Champion

Re: May 2017 chemo starters

Hi Heather, re sun, from pre chemo assessment was warned that I needed to use factor 50, stay out of the sun if possible, otherwise ten minutes was maximum ! Very shocked of course as I love the sun and tan easily. The explanation I was given is that the chemicals pumped into us cause a photo sensitive reaction, and us chemo girls will tan (burn) too easily. This will store up possible skin related problems for us later. I assume she meant skin cancer? My chemo nurse also advised keeping the skin in as good condition as possible ( not burning) ready for radiotherapy, which may also cause burning. She was religious about checking that I had sunscreen on when I went to chemo on sunny days. A bit like a mum really, so I've just always done it. I have straw hats as well as the sun really bothers my eyes now the eyelashes have gone. Sorry if it's not what you want to hear, Heather.  

Mai, paraban free udderly cream is available from the Live Well with Cancer site . I got some for my brother who is in palliative care. It has worked really well for him. They also do a great nail oil which has been super.

Good luck all you ladies battling on. I had my Hickman line out Friday, and, as usual, not problem free, but when they rang that bell and cheered as I walked out I felt GREAT! Wishing you all bells and cheers. πŸ…πŸŽ‰ πŸ’‹

treehouse
Member

Re: May 2017 chemo starters

Hoping everyone is well. One more week till the summer holidays πŸ˜„
treehouse
Member

Re: May 2017 chemo starters

Sitting in the car while husband goes into coop to buy healthy stuff for lunch. God the chip shop next door smells Good 😊 lol
Mai7
Member

Re: May 2017 chemo starters

Oh, and periods: I'm 48 and  had no symptoms of menopause before. I'd had a mirena coil for years before chemo which stopped my periods. This had to be removed as its impregnated with Progestogen. After the first two chemos I had a period, first 5 days, then 3 days and nothing since! Just had one hot flush following the second period (hopefully that's the menopause out of the way for me Lol!).

Mai7
Member

Re: May 2017 chemo starters

Morning ladies!

 

Yes, treehouse we are all in the tunnel and if anyone gets disoriented and faces the wall, we spin them back to face the light. A deep but good analogy.  I had a weird dream recently - I was in a pub with my partner and a man standing behind us keep trying to poke his fingers into the mesh in my wig as if he wanted to prove to himself that he was correct in thinking it was a wig! Paranoia dream or what!!

 

I too kept a sick bucket beside the bed for the first 3 FECs but as is started to become a storage solution instead of a sick bucket I moved it to the bottom of the wardrobe! I'll probably put it back after I start Docetaxol, even though it's lower risk of vomiting, it's still going to cause change anxiety!

 

I stopped shedding hair after the first 2 FECs and still have about 45% of my hair (still more bald on top).  My eyebrows and lashes have definitely thinned.

 

Raitchr, I now have a vision of you walking round with your hands in a fist all the time, looking like you're ready to punch someone. Although, after everything we've had to endure with chemo,  we probably aren't too far away from that feeling!  πŸ’ͺ🏼 I know what you mean about the dark nail maintenance though, I tried it at first and got tired of the chipping. Plus it can't be good for the nail condition (the CND solar oil treatments have definitely helped). I'll try it again for Docetaxol and see how it goes, failing that, I'll walk around with fists or wear long dangly sleeves!

 

 

treehouse
Member

Re: May 2017 chemo starters

Last Tuesday the nurse got the canular in second try after hitting the nerve and said ' has anyone's mentioned a pic line to you?'
At which point I screwed up my face and said ' no no no no no'
She just smiled and said ok
Lol.
Bet she put it on my notes for onc to discuss at appointment 😑
katie11
Member

Re: May 2017 chemo starters

That's a very deep dream treehouse! Your sub conscious is obviously trying to keep you going!
Your veins must be amazing with all the hours of treatment you have had! Do you think you will need a picc line? Not looking forward to tomorrow but in a weird way can't wait for chemo with it on Wednesday!
treehouse
Member

Re: May 2017 chemo starters

Hi Katie well done πŸ‘ for party yesterday you deserve a gold star ⭐️. Good luck for pic line tomorrow. My arms are really struggling now. Left arm badly bruised and one vein is hard. Right arm has nerve damage. I get shooting pains over my knuckles. Really hope that is temporary needle damage.
Feeling lots better today. Woke up in time for an oxygen hit ( nice present for my new RBC) then went straight back to sleep.

I have not had a period since the start of may but lots of hot flushes. Having no hair helps.
All hair stopped falling end of round 2.

Keep fighting ladies we are getting there. I imagined I was walking down a tunnel last night and forced myself to see the light at the end but then I realised we were all in that tunnel some in front som behind and even though I couldn't always see the end everywhere I looked I could see you guys. We are not alone.
katie11
Member

Re: May 2017 chemo starters

How you feeling today treehouse? Has yesterday given you an instant lift or is it a gradual thing? Make sure your hubby doesn't back out of blood donation ha lol! Very nice thought from him x
katie11
Member

Re: May 2017 chemo starters

Thanks wolfee, guess it's just another unknown! X
WolfEE
Member

Re: May 2017 chemo starters

Katie11, try and not worry about having the picc line put in. I was a nervous wreck before mine but I can honestly say it really isn't so bad the worst bit is the injection that numbs the area it's like the injection at the dentist you can feel it but it is quick and works fast. Don't watch don't look at anything (I had a big x-ray screen over my head couldn't see anything anyway. I was shocked when she said it was finished I hadn't felt a thing.
I promise you, you'll be on here after saying I can't believe I was so worried. Xxxx
katie11
Member

Re: May 2017 chemo starters

Morning all!

I have an sick bowl (washing up bowl) in the car for emergencies! Lol. Thankfully not needed it as yet!

As well as nails how's everyone's eyelashes holding up? Mine are definitely thinning on the bottom.

My side effects on weekly paciltaxol have been fine. 1st one I had bone pain but not had as more as yet on 2nd. My veins are still bruised and sore though. Got my appointment for picc tomorrow. Very nervous!

Hope you enjoyed your meal rosie x
Trisha69
Member

Re: May 2017 chemo starters

Im 48 and have the flushes too, had 2 periods on chemo nothing on 3rd FEC  been irregular sinve Jan when had a Polyp removed, so me too hoping thats me done πŸ™‚

Raitchr
Member

Re: May 2017 chemo starters

Forgot to say I have been having hot flushes at night and a few in the day. I am 46 and since starting chemo my periods were more regular as in 28 days rather than usual 35 days. Then after last FEC had one 2 weeks after last one. Hoping chemo knocks them on the head as assume I am naturally close to menopause anyway.

Raitchr
Member

Re: May 2017 chemo starters

Morning! I too have a sick bucket next to the bed, never used it but it also goes in the car on chemo day. Not saying that my husband or mum are bad drivers but you never know what gifts chemo will give you! 

 

Re nails, I tried the black polish from day 1, maintenance was too high to keep it on. Now stick to lots of thick layers of glittery polish on toes which completely covers nails and keep crocs on sitting in garden. Fingers nails just have a couple of coats of clear as that is all I can manage. I try to keep hands out of sun as in loosely scrunch my fingers up if I sit outside. My finger nails have a darker ridge which is roughly 3 months growth so 1st chemo damaged the nail bed straight away despite trying black polish. My only concern is keeping toe nails as it will hurt in winter shoes with no nails. Finger nails would be less painful for me I think.

 

T s/effects so far are less than on FEC as in nausea so much better, but tiredness is worse and came on sooner so guess its from end of steroids.I still have slightly irritated nasal and digestive tracts but not major. Have started taking hay fever tablets as supposed to help bone pain, T is made from Yew tree needles so that's the link, mine are Clarityn with Loratadine. 

 

Heather

WolfEE
Member

Re: May 2017 chemo starters

Treehouse, I had a sick bowl (washing up bowl) and yes it's still next 2 my bed however, it does now double up storage: migraine eye mask, hand cream, sleep hat, kindle, glasses, bonjela ...... hope I'll never need 2 use it for original purpose but it stays - just incase.
In fact I feel lucky so far I've not physically been sick at all.
treehouse
Member

Re: May 2017 chemo starters

Am I the only one...? I have had a sick bucket next to my bed for 11 weeks now. I have not used it at all but am too scared to put it away. It's like my lucky bucket, if I keep it by my bed I won't be sick .
Feel free to tell me I have lost it 😁
misyangel
Member

Re: May 2017 chemo starters

Heather you will have to keep us posted how your nails hold up and any other SE. I am like you I can't stand the taste of water which is diffult when they say to drink loads of water 

treehouse
Member

Re: May 2017 chemo starters

After my experience, my needle phobic husband has just decided he should give blood. 'Only fair 'was his response. Bless him.
X hope everyone gets a good sleep. And tomorrow is a good day x x x
Mai7
Member

Re: May 2017 chemo starters

Rosie, same here, I used to give blood (for about 10 years) but after exotic holidays, pregnancy and now cancer it's unlikely they'll want mine!

 

I asked the March starters about Docetaxol and they said get some Udderly cream for hands. I looked it up on Amazon and it contains parabens but there is a similar paraben-free cream called "muck off" anti-chaffing cream used by performance cyclists.  Sore eyes is another side effect so wear sunglasses as much as possible.

 

Katie, well done on surviving the party!

 

Trisha, I stopped ironing about 7 years ago. I just decided one day "if it needs ironing, don't buy it" I threw out all clothes which crease and have never needed to iron since! πŸ˜‚πŸ˜‚

Raitchr
Member

Re: May 2017 chemo starters

I had 8 steroids on my 1st T this week, starting the day before chemo. I take them to bed so I take 4 as soon as I wake up, I have a drink and packet of ginger biscuits on bed side table so I can take them asap in morning. Then I take the other 4 at lunch time to get them out of the way and never after 2pm. I have trouble sleeping at night and wake between 3am and 5am and nap in the day. Much prefer the 3 days of steroids starting before chemo than 3 days after, get it out of the way. I am tired and have had 3 naps today but hoping that will pass.

 

Not given vitamins by Onco but I take a multi vitamin which they were happy with. Mouth is sensitive but drinking  coke and using manuka honey is fine. I have taken constipation meds from oncologist from day 1 of t chemo and no problems so far but have gone off drinking water as tastes yucky.

 

I have very dry eyes again, mentioned it timing I he just said gingernuts counter dry detectors but if pain in eyes then call helpline. Mine feels like I have been swimming in the sea or underwater without goggles, drops help but have to use then hourly. Clears after a day or two.

 

Hoping for a less tired day tomorrow, have no energy and a bit bored but it will pass.

 

Heather

treehouse
Member

Re: May 2017 chemo starters

I get diarrhoea rather than constipation and can't stop farting for the first week. No mouth issues but sore bot towards the end of the cycle. I spend about 3 days each cycle in bed. πŸ˜ͺ
misyangel
Member

Re: May 2017 chemo starters

treehouse did you blow up by taking that many steroids as I swell up on two a day let alone 8.
misyangel
Member

Re: May 2017 chemo starters

Trisha mine is her2 positive mine is 1.7cm but it sure feels a lot bigger than that, not sure about lymph nodes as don't think they can tell until they go in how many are affected but some must be for them to mention that
treehouse
Member

Re: May 2017 chemo starters

Sounds like my regime missy. It's tough but worth it x
treehouse
Member

Re: May 2017 chemo starters

Yes I take 8 steroids for 3 days. I struggle to sleep then have a massive come down day 3/4. Although with no RBC I slept through steroids this time.
No I have not been given any vitamins but I have been on the same drugs rather than changed.
Trisha the heart ultrasound is to get a baseline you will have one every 12 weeks to check for changes due to herceptin. I have my next one on wed and am nervous 😩
Starting to feel like a human again x
Trisha69
Member

Re: May 2017 chemo starters

Was given a leaflet for Pertuzabeb but not sure.  I have a PICC so not had any probs with veins.  What your diagnosis?  Mine HER2positive with they think no lymph node involvement.  Lump 3.8 cm x

misyangel
Member

Re: May 2017 chemo starters

Trisha I don't start mine until august had final fec yesterday, I must admit I am a little anxious about starting. Side effects with fec were constipation, but had Movcal on second one every night before bed. My main problem is the steroids keeping me awake as if I don't get enough sleep I start to get very weepy, I Also had a lot of soreness downbelow like an ulcer but didn't have that on 3rd, after fourth one felt really chemically yesterday and I also have cording on my veins on both arms but I am told the tax is not as harsh on veins. I am also having herceptin but have to go day before for that but I am also have two other drugs which I had to have heart scan for I think it is pertuzabeb as they had to apply for funding for that so it sounds like you are having the same
Trisha69
Member

Re: May 2017 chemo starters

My FEC was delayed by 10 days to give my body time to work with the Vitamins.  AT last blood test they said didnt need to take them anynore.  Maybe I should?

misyangel
Member

Re: May 2017 chemo starters

Another question treehouse were you given vitamin tablets prior to tax, I was given them which I thought was for dry eyes but the chemo nurse said it was in prep for tax