May 2017 chemo starters

[Rosie65]

I got the flushed face last time so it's not emend. I think the nurse said it's caused by the steroids

Yes I did cold cap in the end. They had it all ready and I was there an hour early to take the anti sickness so they said I might as well. It was reasonably pleasant in this heat but is very heavy and prolongs the treatment so much. Think I might phone the day before next time so they know I don't want it again. I just get talked into into it. I swear the nurse is on cold cap commission!!

[treehouse]

Glad today went well Rosie. Fingers crossed you don't get any sickness. I did get a very flushed face for a couple of days but was not sure which of the many meds caused it. Let me know if you notice anything. Did you cold cap today? I expect it would be almost nice in this weather 😉

[Rosie65]

Just catching up on all the posts. Wow - you were all awake early today!

Had my second lot of EC and so far so good

treehouse - I've been given Emend aprepitant so hopefully it will do the trick. Plus all the anti sickness meds I had last time!

Re smoothies my daughter made me a kale, mango, yogurt, frozen pineapple and almond butter one last week. It looked revolting but she made me drink it (bit of role reversal going on there) and I felt really good afterwards. Really boosted my energy. She has gone shopping for more healthy foods ( with my credit card) so I'll see what she comes back with

[treehouse]

Hi Maggie. Not sure what AC stands for. Sorry you had such a bad experience with the steroids.
Sending hugs. X

[maggie aitken]

Due to the adverse reaction to steroids, we are changing to AC Chemo - does anyone have any information about this? There clearly still have to be steroids but at lest I know what to watch out for this time around ...

One of the issues I have is that the trauma of that reaction was such that I cant really recall much of any other effects after the first chemo... so it will be a bit like first time around. 

Getting used to the variety of headwear I have garnered, currently modelling a nifty lightweight lacy cap in beige and light brown, but also considering - while still on the 'good' week, a toddle into town for a look at wigs...could be fun. 

But in any case, all very best wishes to you all...

[treehouse]

Hi . Love the slipper incident Mai 😁. Had a lovely afternoon sharing medical woes with a friend enjoying a pub lunch. Such a gorgeous day. And a bank holiday ahead. Speaking of which, scalp starting to hurt. X

[Mai7]

Katie, I feel sure my leg hair was a bit thinner this morning so hopefully that will continue.  My head was a bit tender from hair falling out so I rubbed Voltarol Gel on it. I'm realising my house is starting to sound like a small pharmacy! 

Im popping outside for a quick game of swingball against myself. I might pretend the ball is my tumour lol!

[Mai7]

MJK, I'll look out for the smoothies. I've never met a smoothie I didn't like! Sore mouth is easing off a bit now, just feels a bit like there is a rough/burnt patch when I run my tongue over it. I think it's at its worst first thing in the morning. I can only assume I'm sleeping with my mouth open and drying it out!

I've ordered some "Activon Tube" Medical grade manuka honey from Amazon for now, which gets good reviews and is cheaper than the jars of manuka honey. I'll look out for offers in Holland & Barrett later on the jars.

[Raitchr]

I have a Braun 6520 in ear thermometer, from Amazon. Its great, it lights up red if temp is high, memorises 10 reading and easy to use. It was just like the one the hospital used when I had my op. I spent more on this as will be useful for the children when they are ill so worth spending a bit more.

[Raitchr]

Hair now shedding 5 strands at a time, there is a trail all over the house. Just been clothes shopping and left the changing room fast as my hair went static and the floor was covered, I must look a sight! Legs and underarms hair have stopped growing !!

[Raitchr]

I love mashed banana on toast with a bit of honey, something sweet but a bit healthy too.

[Raitchr]

Re manuka my Mother in law was advised to use a high grade manuka on her leg sores, it did help to heal. It tasted more antiseptic than the lower grade, I didn't taste it but my husband tried it on toast !!

H

[katie11]

Why oh why does my hair vacate as soon as but leg hair and lady garden are still making a comeback! Slower I admit but why! !!!

[MJK]

I meant to say frozen smoothy think healthy haagendas! 🙂

[MJK]

Hi WolfEE, good to hear you're ok. I gave up on ear thermometers. The small digital thermometers are cheaper but better. Katie bio oil is supposed to be good for scars and available in most supermarkets. Mai7 I hope you got more sleep, sorry your mouth is sore. I haven't had the sore mouth yet but discovered a dairy and sugar free smoothy called Frill (you can get it in Waitrose ). They do chocolate, berry and 'green' flavours and are healthy and delicious.
I felt quest yesterday but better today.
Mary X

[katie11]

I don't have the option button on my posts to amend. is it just on a desktop version? And now it's bloody done it again arghh. I'm honestly not this stupid x should say I love your posts MAI7

[katie11]

Glad to hear your ok wolfEE. Eat whatever you need to get through this.

Look your posts MAI7 you cheer me up every day.

Heather our manuka honey guru have you ever used or heard of the healing creams containing the honey? Was thinking of trying it on my surgery scars? I have like an upside down to t shape under my boob and would like to speed up healing as am sick of wearing sports bras. My mum told me she would take me shopping for all new underwear when I was ready but just worried wires would irritate my scars x

[treehouse]

Good to hear from you wolfee. 😁 oh my thermometer was not expensive. Hope it is good enough. I had the toast thing too for a while. Back on porridge now. Just do what makes you feel ok. I had ice poles for sore mouth.

[WolfEE]

Morning girls. So I called the hotline number this morning as my temp reaches 38. They phoned my A&E and let them know I was on my way. I was seen very quick. My temp at the hospital was lower it was 37 something (just under the 37.5 danger range) they checked me over and said that as I haven't any other sysmptoms I could go home but I need 2 keep close eye on my tempreture and if it rises or I feel unwell get back quick. They told me I need a new thermometer because accurate readings are so important. The one I'm using is a digital ear one that I got new it was about £35 from Argos so god knows what a good one is?? I'm going 2 sort one out this morning. I'm so paranoid now.
Regarding food. Today is my last day of steroids I've been eating toast, toast and more toast all the time toast. Oh and sweets sugar does not make me feel sick apparently!! Almost wish it would. Tomorrow I make a big effort and try eat more healthy.

[Mai7]

Raitchr, the sore mouth is exactly as you suggest - like burning your mouth on hot pizza. It's very mild soreness but my current preventative measures aren't working 100% so I'm going to order some Manuka 20+

my idealic oxygen story ended this morning with me waking up to find bird or hedgehog poop on my slippers, so careful where you wander in search of oxygen!

[Anniej]

I agree with you, Heather. I'm using Manuka 25, and like you have stocked up in the 1p sale. It was interesting talking to the manageress who also recommended Manuka for sores. Has anyone else heard of this? She uses it for her psoriasis . Mind running riot now at the though of going to the loo with honey covered fingers.☺️  Back on lovely liquid diet ready for chemo 2 tomorrow. Off to yoga shortly at Maggies to get my serenity  sorted! Ugh, steroids. I didnt have a yearning for food, but I was pretty manic . I think I could have built a house!

[treehouse]

WolfEE how you doing today? Been thinking of you?

[treehouse]

Ooh Mai interesting about the oxygen. I have about 10 trees in my garden 2 massive oaks. Maybe I should sleep in the tree house? 😊 I have found eating settles my stomach so any weight I lost after diagnosis due to stress/ fear I have definitely put back on! Well today I am meeting a friend for lunch who is also recovering from critical illness. Almost feel guilty being off work. Almost😉 . Good luck today anyone with appointments x

[Raitchr]

Yes use option box on right of your post to edit

[katie11]

Sorry predictive txt at it again. Did someone say u could amend it x

[katie11]

Good luck today Rosie65 xx

[katie11]

Morning all early risers. I've been awake since 4
30am stupid steriOdstock. Although can't complain if they do there job.

Anniea. I was exactly the same for about a week. Couldn't stop eating!

Love the reasoning behind treehouse name! It's funny

Think I'm feeling OK first thing bit of a headache and mouth feels bit horrible. Hopefully will pick up x

[Raitchr]

I was on steroids for 4 days and did notice I thought about food all the time. As also felt sick late in the day for those days and some foods made me feel sick I just ate what I wanted. I did ask my husband to make sure I wasn't eating the whole kitchen.

Also I made sure I had bananas in the house so that I could have something sweet and found making a dish of fresh fruit took time and looked nice and tasty and went for that rather than half a packet of biscuits. I am not saying I didn't eat the odd bags of crisps or two.

My favorite daily treat is 2 Brazil nuts and 1 chuck of dark choc, both good for you.

One of the downside of chemo for me is disturbed sleep. I often wake between 3 and 5 am and not on steroids at mo. However I love to hear the dawn chorus and see the sunrise. To me if there is a "benefit" to being off work for 6 months it is being able to enjoy the summer weather, I might have been in a different frame of mind going through this in the gloomy winter!

Heather

[Mai7]

AnneA, my appetite is pretty normal. Are you on extra steroids or anything which increases appetite? You could try drinking a glass of water before you eat to reduce food intake and have something with oats for breakfast as they are known to release energy slowly into the system and keep hunger at bay. If you have a high metabolism then increasing food intake shouldn't be a problem.

[Mai7]

Katie, referring back to your mention of oxygen chambers, I haven't heard of this service, however, I can share with you a wonderful experience this morning, a free oxygen service (note the time!). Having partially read the Radical Remission book, in which a guy diagnosed with cancer quit his stressful job and got closer to nature. He observed that the birds start singing exactly 42 minutes before sunrise every day and realised that it was because it is when the trees release their oxygen into the air! So, I got curious.  This morning at 4.30am I woke up to the sound of my cat vomiting on the landing (it wasn't quite the dream I had in mind). This prompted me to get up, clean it up and noticed that the birds were starting to tweet. I decided I had to go outside to explore the hidden truths of nature.  I stood out in the garden for about 20 minutes. Sure enough, there is a wonderful burst of oxygen and clean air and all for free!  Amazing! I'm going to try and get back to sleep now.......

[AnnieA]

Hi ladies. So I know a lot of us going through chemo suffer with nausea and loss of appetite. I'm just wondering if anyone else has gone the opposite way and wanted to eat everything in site like me. I've been awake since 3:30am and despite 2 bottles of water all I can think about is food. This is happening daily.
Annie x

[Raitchr]

I had sore mouth on both sides of the roof of my mouth, near my upper back teeth. I used 2 x teaspoon of manuka honey and kind of rolled it around my mouth as its quite think and used my tongue to massage it into the 2 areas which were sore. It has healed it well. It wasn't like an ulcer, more like when you burn your mouth on very hot pizza.

Apart from that I can say my mouth has been ok with the honey, I have 3 more jars left as got it I in the penny sale, stocked up based on 1  jar per month through chemo. I started taking 1 teaspoon each morning when kettle was boiling first thing, before I started chemo as I thought it may help to make sure my mouth was 100% before I started chemo.

I am a doctors daughter and my Dad always told me different way to take meds so assumed that I should start manuka as preventative rather than curative. Nothing worse than a sore mouth.

Heather

[Mai7]

Katie, all this time you've been happily chatting away with a mushroom lol! Mai Take-mushroom!

My sore mouth is starting again, pretty much exactly the same day as last cycle. Day 7-13 = sore mouth period. Gengigel at the ready. I might try the manuka honey. Has anyone used it to fix sore mouth? Or just as preventative? Does it do what it says on the can?

We went for a walk this evening and I was wigged up and wore a military style baseball cap on top. I feel better with the cap on as it squashes the hair a bit flatter and looks totally real and more like me. The wig is really good but thicker than my hair.

[treehouse]

Good luck tomorrow Rosie. We all have slightly different experiences but sharing helps.x

[Rosie65]

Katie I'm having EC again tomorrow, will have 4 in total and then 4 Paclitaxel, all fortnightly.

Because of family history I had annual mammograms from age 26 to 48 and then bizarrely they moved me to 3 yearly screening, so didn't get called last year. I found the lump myself and it was already 3cm grade 3 invasive ductal.

Haven't been prescribed any antibiotics either

[Anniej]

No antibiotics prescribed at all. Yes, ring the helpline. Apparently the progression in chemo patients is extremely fast. Don't want anyone hospitalised! 

Good luck to all this week. Stay well and stay strong! X

[treehouse]

Mine also says 37.5

I was not sure how the username thing worked and I had spent 4 days in bed. I could see a tree house through my bedroom window 😁 was the only thing that came to mind. Sorry 😁
Jo x

[katie11]

Ha ha yeah the red pee! Did any of you experience the prickly bum when they inject one of the anti sickness things? Very weird although not as bad 2nd time around. I've not got antibiotics either , just the 7 day injections from tomorrow .

I found my lump. I was getting pains and when I checked it was there. Mine was inside a cyst they could only tell size of cyst which was 5cm. After it was out and cyst drained it was only half a cm

I thought ur name was mai too. Never imagined it would be a mushroom lol! What was ur name treehouse? What's the story behind urs? Think I was in too much of a daze at the time of registering. Didn't even think bout being creative!

As for losing eyelashes all I can say is least it's nearly summer and we can wear sunglasses xx

[Mai7]

MJK, you have the big lump like me and lymphs also. They can'toperate on mine though, I think because of diffuse margins I.e., it doesn't have a clear edge, it spreads outwards beyond the lump.

[Mai7]

WolfEE, I just checked my emergency notes and mine states to ring for temperature above 37.5 so if you haven't phoned, do it now. 

Treehouse, I'm also a hippy at heart. My real name is Nicola, or Nikki but continue to use username to avoid confusion. 

[treehouse]

Take it easy MJK. Never thought I would be grateful for my tiny boobs. Mine is about 9mm but high up so not easy to get on a mammogram.

[MJK]

Yep, epirubin is the red pee culprit. I have lobular cancer and dense glandular tissue so much harder to pick up. By the time I got a lump it was BIG and had been growing for a while. Surgeon removed a 68mm lump and it had got into the lymph nodes. A mammogram could have picked it up earlier... Now resting in bed. X

[treehouse]

I am not on antibiotics 😐 are all of you? I have an emergency prescription.

[Raitchr]

My lump was 2.4cm and had been there for about a year before I could feel it, according to breast surgeon. Also it didn't shown on mammogram and ultrasound couldn't size it. Dense breast was the reason given, I am 46.

Red wee from the red E part of FEC. It showed straightaway as I had a wee on way out of chemo. It was also run through my chemo line first and the nurse sat with me in case of reaction. Red wee lasted for 24 hours but depends how much water you drink. I made sure I drank loads before bed as didn't want it to irritate my bladder in the night.

Heather

[Raitchr]

Just reread my chemo leaflet, mine says -

38.0 then repeat again in 1 hour and ring unit helpline if still 38.0 or more

If more than 38 degrees to ring IMMEDIATELY

If normal temp or low but still feel unwell then contact unit for advice

We are also on a 21 day dose of antibiotics as precaution each cycle.

It is funny as in strange how different units have different rules.

Heather

[treehouse]

MJK talk me through the pink pee. What drugs cause that? I feel I have missed out 😉
Hi Maggie. I should have been round 2 on Mon but bank holiday pushed it to Tues. I agree about the ear rings and already wear specs . Screening is great but how many of us found our lumps ? A lot can happen in the 5 year gap. My Dr said mine was only months old and growing fast.

[maggie aitken]

This will be round 2 next Monday, and tomorrow (Thurs) is bloods and a discussion about how I will not be using steroids ever again!  Re hair loss, my fabulous Claire the Hair gave me a Number 4 - which leaves some hair but not enough to block the drains or anything - and I do think this is a great chance to invest in some serious earrings. I have also been given eyebrow powder, loads better than pencil, but the losing of eyelashes means very gritty eyes.  Maybe getting huge eye covering spex with plain glass to protect might be possible.

I hope very much that everyone on the forum will gain support and understanding from writing to people who are in similar situations, I am much older than any of you, and available as a shoulder to cry, howl, wail or generally complain on! You are all doing incredibly well in this pretty much impossible situation, life is just rubbish sometimes - but better days are coming. x

[Mai7]

Mammogram at 47 just isn't enough really because it isn't catching the population with dependent children and ignores the mental effects of body scarring in youth etc. Cervical screening is done across a wide population because it is cheap and effective. We just don't have the equivalent for breast screening but there should be better screening available. It's not good enough. It would be interesting to find out the cost of our treatment (including long term management costs for side effects and hormone therapy and anti depressants) compared to the cost of having a screening service in community health clinics.

[treehouse]

Very creative. I just assumed it was your name. My parents were hippies lol. 😂

[Mai7]

Aw that's cute Mai7 reg plate. I made my username mai7 partly because of Maitake mushroom, partly because it spells mate, it's my grans middle name and Mai's heaven because I felt a bit morbid at the time! Such creativity in 4 characters!