May 2017 chemo starters

[katie11]

So jealous of your goodie bag treehouse. You get everything! Where abouts in the country are you? Will have to go there lol .

Was thinking before of actually what you all look like and if we ever did meet how the image in my head would resembles you. Just got images of mai7 dancing to mambo no 5 and running round trying to catch the pigeon wearing lola!! Gosh the sun has got to me today !!!

[treehouse]

Mai 7 at her bonkers best! 😁
I have omeprazole for heartburn in my goodie bag. I take one every morning. Did not notice it with first treatment but definitely got it with round 2.

[katie11]

Ha ha love your posts mai7. Although now have that song in my head xx

[katie11]

Well done treehouse! Good luck with injections , I've two to go of the little blighters!

Has anyone else suffered from heartburn? Just made chilli for tea and it has burnt me all the way down! Strawberries and ice cream to recover! Lol x

[Mai7]

MJK, thanks for the nail care tip, I've ordered some CND solar oil from Amazon. Can't believe you had to deal with a fly-infested dead hedgehog whilst trying to avoid germs, it's just like me when I had to rescue the pigeon from the fireplace, it feels like the world is conspiring against you! The glasses, yes, as I had the fan to the side so  it blew down the side of the glasses. Note to self: move the fan.

A couple more useful websites I've found:

beautydespitecancer.co.uk

greenpeople.co.uk

well done with treatments today. I'll be hitting half way next week with chemo no.4 (Now I'm thinking of the song: mambo no.5, a little bit of FEC-T in my life, A little bit of peppermint by my side, A little bit of Cranberry is all I need......... sorry, its the hot weather effect) 😀

[MJK]

Well done treehouse. Doubt you'll feel like dancing though unless it's in a cool shower. Hope everyone is coping with the heat. Our patio thermometer now says <50c so I'll give it a miss!

[treehouse]

MJK.Yuk. My neighbours cat used to kill rats and leave them on my door mat. I have since moved house!
Well that was treatment 3 of 6. So half of my poisoning done. That definitely deserves a little dance. 💃
Been up since 3am and am now completely knackered. Chemo brain big time, even asked hubby what day it was.
I like the sound of the look good session but I completely know what you mean by too hot for makeup. Now I just need to ride the side effect wave for the rest of the week and man up about the injections . 😁

[katie11]

Poor MJK! Bet that was a lovely surprise on ur doorstep!

Well done ladies on treatment today at least one more down! This heat does not go with chemo! Already hot . I normally love the sun too x

Had my look good course today. Quite good but was far to hot to be sat putting make up on! I'm definitely going to look at one of those mats. Sounds heaven x

[MJK]

Glad the platelet dance worked treehouse. Know what you mean about chemo brain and heat combo Mai7 wearing glasses helps with the dry eyes and fan. Body feeling poisoned. I've been painting my nails with a CND solar oil which has helped so far but as you're further forward than me the lilac /yellow combo may be coming my way too. I've managed to avoid constipation but my lovely neighbour brings round a vegetable juice every day which helps. Low point of the day was dealing with a dead hedgehog outside the front door covered in flies. Ugh!

[Mai7]

Just catching up from yesterday and I find everyone in the bowels! Now no one wants to talk about the bowels, of course, but when they are a problem, it's hard to think of anything else! 💩  I suffered after my first treatment and managed that situation to not happen again! I keep fybogel in stock and senokot and drink fruit juice, drink plenty of water, eat pulses etc. Also keep anusol in stock and sudocreme.  I think the sore mouth situation applies to the whole digestive system end-to-end as the cell death occurs right through the mucous membranes.

Treehouse, Glad the platelet count is back up and the dance was more than just Strictly-dumb-prancing and glad you also have tested the oxygen theory.

Im finding the heat too much on top of the chemo brain. I have a fan next to me but it's just drying my eyeballs out!  AnnieJ and WolfEE - I'm liking the sound of the chillow. 

I've noticed my eyelashes are thinning very slightly and my nail beds are changing colour, lilac at the base and yellow at the tips. Anyone else have the same colour spectrum? Is there anything you can eat or apply to help with this?

[treehouse]

Good luck today Rosie. Well done Annie.
Bloods are good platelet count is high enough. Thanks Mai7 for the magic boogie vibes. Round three has begun
😁.

[Anniej]

Constipation - husband keeps me supplied with Pontefract cakes, which I eat like, well, cakes! Also dried apricots which normally give me diarrhoea ! So far no meds needed. Just had round 3 EC Friday, and first bag of liquorice about to be opened ! 😊

[Rosie65]

Morning all - the chillow sounds great Anniej,  Wolfee I'm also checking out Amazon.

Good luck today treehouse - I'm sure that all the fruit, veg and hammock swinging will have done the trick.

Am off for a day at the hospital myself; bloods, oncology appt for round 4 on Thurs and a kidney function test to check kidney prior to having carboplatin.

[Trisha69]

Hi, I asked about the Goodie bag too, and because its such a busy unit. (Exeter) they have had to stop doing it!  On my 1st round I misread the packet and wasnt taking enough pills.  Durr.  This time round its not as uncomfortable just frustrating.  Scared to leave the house incase I suddenly get the urge! xx

[WolfEE]

Morning Trisha, yes with the constipation. I take same two tablets plus I drink prune juice (yuck) I still only go every other day and not easily but then after around day 7-8 it starts sorting itself out.
I have told my hospital they have never given me anything. I've heard eveyone speak of their goodie bags and all I've ever had is my steroids and anti sickness pills and even then they count how many I have l left from previous if I had forgot one then they take one out of new batch.
The constipation is so uncomfortable and for me is worse this time than 1st time??

Treehouse. I wish I had thought of the oxygen head shot.

[Trisha69]

Any ladies suffering with constipation after each cycle of chemo?  Im taking 2 Dosucate twice a day and still nothing since last Thursday 😞  Any tips?  Am eating Shreddies , 2am this morning and again at 6am.

Been given Glycerine pessaries too but not working.

[treehouse]

Morning night owls. I have been wide awake since 3. I also have a chillow its great. Was lying here and suddenly realised I could hear birds singing 🎶 and I remember what Mai7 said about oxygen. So I stuck my head out of the window and breathed deeply. Felt good and really cooled me down. Did not help with sleep tho.I blame the heat, steroids and worrying about today. X
Have a good day all

[WolfEE]

Anniej, congrats on the 8 hours the mat sounds like a dream I am now about to bring up amazon and have a look.
Downside you now have a long night ahead of you!!! I really can't sleep either so annoying.

[Anniej]

Hi Wolfee, it has been awfully hot hasn't it ? I bought a chill mat which goes in the freezer for half an hour. Sad to say with chemo fuzzy brain I forgot about it until this afternoon when I was really struggling. Did it work? Well, it did.Too well.  I've had eight hours solid sleep laying on it - after wrapping it in a towel - but the down side is I'm now wide awake!!! Ain't chemo fun- not 😱

[WolfEE]

Hi All, I'm struggling in the heat I'm not a sunshine person anyway I burn and get irritable - the fair skin and freckles are from my dad, along with Webbed feet!!! Hahaha but ..... faulty gene that's my mums side!!!!
I can't believe I'm saying this but roll on winter (typically British can't please me as far as the weather goes)
Hope your all having a nice weekend, xxxxxx

[treehouse]

Your dad sounds like mine 😁 Rosie, that is just the sort of thing he would say. I wore Ashley out for lunch but whipped her off as soon as I got home. Far too hot for head wear today. Hope you are all coping with the heat. Not looking forward to a long night with the steroid glow.

[Rosie65]

So far I've been told I'll just have chemo and then because I'm having bilateral mastectomies I won't need radiotherapy. But perhaps that's because there is no apparent lymph node involvement showing on ultrasound although they won't know definitely until after surgery. 

Was also thinking about timeline and work as originally I was having chemo over 4 months instead of 6. Now they say it will be poss 12 weeks of paclitaxel, although most people only manage 9 as they get so anaemic. So that takes me at most to mid/lateSeptember now plus 4 week recovery before surgery and then however long it takes to get over surgery. It's really difficult to gauge how long you need off work. I have been working from home but not sure I'll continue when I'm on a weekly regime and worried about taking too much time off sick.

treehouse - yes here's to all the dads on Father's Day - mine is 89 and has lost his wife to ovarian cancer and has watched/watching two of his daughters battle bc. Although he makes me laugh as he's quite proud of the fact that it wasn't him that gave us the faulty gene!! "Nothing to do with me or my side of the family" he keeps saying.

[treehouse]

Big love to all our dads on fathers day. Mine has had to watch his wife and now daughter fight this disease with his quite positive attitude and big hugs. 💕 and sense of humour. 😁 x I now have his hair cut too 😉

[Mai7]

Trisha, I haven't been told I'll definitely be having radiotherapy yet but I'm assuming I will due to the size of the lump and being node positive. The radiation is to kill any localised cancer cells to prevent local recurrence (especially if you don't have clear margins but they don't usually know that for sure until after surgery). The Herceptin is to stop the epidermal growth factor if you are HER2+. I'm HER2- but ER+ so will probably have to go in tamoxifen or have ovaries removed or both to stop oestrogen production and block oestrogen receptors.  I haven't asked about either yet as I just want to get further through chemo before I peep at the next phase! 

[treehouse]

Mai platelet dance 💃😂 that's funny why didn't I think of that?
Trish no one has discussed radiation with me yet. I think they are waiting to see how well the chemo works. I was hoping to be back to work before Christmas and just have a morning off every 3 weeks for Herceptin injections. But that might be wishful thinking . I don't think they are willing to comit to a time scale yet.

[Trisha69]

So the radiation and herceptin?  I get so confused.  They did say hopefully a lumpectomy if it has shrunk which they will be able to tell because of the staples, just dont know timescales.  Will ask more questions on Chemo no 3 x

[Mai7]

MJK, Treehouse, I did enjoy my 10% but now have to get through another 90% of good before such wild abandonment can be experienced again! 😇 

Im going to perform the platelet dance tonight and send waves of platelet energy in your direction Treehouse. 💃🏻

MJK, every injection is one less. I wonder, if you have a treat immediately after the injection, will it trigger the pleasure centres in your brain sufficiently that you eventually start to look forward to the injections? (it seems unlikely but worth a try)! 🍭

[treehouse]

Mai enjoy your 10% 😁 mmm icecream.
MJK I feel your pain. One down 6 to go?
I am back on the steroids tomorrow, I think I read that they also help platelet production. I really don't want a delay especially as I feel like I am winning a battle. Don't want the little beep having a chance to grow again.

[MJK]

2 ice creams Mai7? You rebel. Oh what exciting lives we lead. Put it down to the 10% rule and the need to stay cool. I'm back on the injections again. Deep joy.

[Mai7]

MJK, Wow, I'm thinking she should have held on tighter to her dream! I don't feel so bad now with the supermarket scare, at least I wasn't live on TV holding onto Lola!  

Today was my turn to be bad. We had a lovely day out and somehow, I'm not sure exactly how this happened, I managed to eat 2 ice-creams! Oops. 🍦 🍦 Had a really healthy tea though.

[misyangel]

Hi Trisha69,  I will be having herceptin but from my sister friend who is currently having the herceptin it is just an injection in the top of your thigh and only takes 5 mins so I would be surprised if they keep the PIC line in.  I am having the hercepin in my second lot of 4 chemo then I am guessing they will just do the injection every 3 weeks, I have to have it for a year so it will take me to next August. I am due to have a lumpectomy /mastectomy after my chemo finished followed by radiaition so I am guessing this will just fit in around it all.

[treehouse]

Thanks for that MJK. 😁 No idea why she felt the need to wear a wig during exercise. I am being a good girl today. Eaten loads of green veg and shiitake 🍄 mushrooms. Also oranges and papaya which is supposed to be good for platelet production. Lovely husband bought all the fruit and veg morrisons had to offer. I am now sitting in the shade in a hammock thinking platelet making thoughts. 😁

[MJK]

http://www.bbc.co.uk/news/av/world-europe-40302842/nigerian-athlete-s-wig-falls-off-during-long-jump

[MJK]

Relaxing and watching the athletics. My sympathies go to the long jumper who jumped 6 metres but her wig only went 5 metres, live on TV. 😝 Whatever wig fails we have ahead of us can't be THAT bad.

[Mai7]

Katie, the Clarytn you mention is the generic name "Loratadine" for bone pain. If you buy it on own brand it's the same drug but much cheaper.

[treehouse]

Hi Trish. I have 6 chemo and Herceptin then just Herceptin injections for 12 months. I am expecting surgery after chemo but not exactly sure when. There is not much lump to take I have a clip too. To be honest I want a mastectomy to reduce my risk and the lump is high up so will leave a very visible scar if they do lumpectomy. Waiting for genetic test results as that may sway things.

[Trisha69]

Hi Katie, yes HER2 positive.  3 Chemo then 15 Herceptin.  I think they will keep the PICC line in for the duration. They have talked about surgery just not when.  I have clips in my breast so that they can do ultrasound to see if it has shrunk.  They want it as small as poss to prevent losing the breast x

[katie11]

Morning Trisha, I can't really help with the herceptin issue sorry are you hr2 positive then, don't know if it's just my area but I've heard some of them have it injected rather than drip? So maybe you can have your surgery after your chemo?

Curlyh I have had the hot face and aching legs after chemo , does just sound like se but keep an eye on it.

Thanks treehouse, I started chemo 6 weeks after surgery (I delayed it a week as there was something I really couldn't miss ). I had a mamoplasty which is a like upside down t shape starting under the nipple so it's a awkward place to fit a dressing. It's never 100% healed but has always been checked and they aren't too worried it's just sore because of the reaction to the dressings it made skin around it very sore. To be honest I think it flares up at my the same time my uninvited visitor shows up. Must be because they swelling maybe? Oh forgot to tell you as you suffer with those blasted injections like me I heard from a friend about taking clarityn to help with bone pain from them. Don't know if it works and if it has to be that brand but I'm trying it. Seem to be OK at minute but can't really tell because of period pain lol x

Well that was an early morning ramble wasn't it. You can tell my family are all still sleeping! Enjoy ur Saturday ladies. We are off to local carrival xx

[Trisha69]

Yeah that horrid visitor!  I had a polyp removed in January then didnt have a period for months and it was wonderfully light compared to the really heavy ones had for best part of two years.  Then last wednsday before my 2nd FEC  the little sod turns up!  Bad enough with the heat hot sweats and perpetual cough and runny nose, oh and lack of sleep!  Grrr.  Found out at 2nd FEC that on my 4th cycle which will start Herception that I have to have it for 15 cycles!  That takes me to May next year!!  So many unanswered questions.  When will they do an Ultrasound to see if its shrinking?  Will they operate before May 2018??  Any knowledge be much appreciated.

[treehouse]

Hi Katie. Sorry to hear about you surgery issues. How long did you have between surgery and chemo starting? I really hope it gets better soon. Don't get me started in the injections, they are the worst part of this whole thing!!
My periods are playing hide and seek, totally lost the plot with when to expect that visitor to this party. To be honest they are now off the invite list.
Keep positive x 😁

[curlyh]

Hi.

Trisha Picc line sounds easier on veins ...wasn't offered Picc line although nurse said there had been a meeting about picc lines being used for FEC, but maybe that will be for future patients...Katie that is annoying about wound dressing hopefully you are not in pain and they get it sorted soon, I too had a period bang on time I didn't expect that with everything else going on. Has anyone else felt a bit of heat in legs at all doesn't last long, comes and goes  no redness or raised lump, just so aware of everything, I do have the flushed face and neck had that last time...x

[Mai7]

That's brilliant news Treehouse. You should get a red and white striped bra or hat now to mark to occasion! 

Katie, hugs and sorry you're feeling poop. The wound dressing sounds unpleasant on top of everything else. Apparently manuka honey can be applied topically to wounds. I can relate to the periodic surprises, I have no idea what's happening with mine - they just appear after each chemo. I just did my last injection today and they always bring me out in rashes for a few days after. The joy of chemo! 

[treehouse]

Just had onc appointments. The good news, I have decided to call tumor Wally as he is so hard to find😁. Not so good news is platelets are low. Will need another blood test to check if I can have treatment 3 on Monday. 😞

[katie11]

Ha, just realised why I had marshmallow day the other day now! Durr should have known x

[katie11]

Glad your doing ok ladies. I'm now day 2 post 3rd EC . General chemo symptons seem fine apart from steriods keeping me awake, it's everything else! Started injections yesterday so starting to feel poo. Also been having some issues with pain and leaking from surgery scars that breast care nurse's are getting on top of but I seem to be allergic to every dressing they keep putting on it and making it worse. And then to top it off I had my little monthly visitor arrive today! What's that about !!!! Ever since I was diagnosed I've been all over the place with periods and now I start chemo I'm more on time that ever! Lol! Rant over and breath. Ha, I'm actually feeling quite ok considering x

[Trisha69]

Hi, had my 2nd Fec yesterday.  I have a PICC line, its a doddle.  Did they offer it to you? Trisha

[MJK]

Hi Curlyh, good to hear from you. A pain about the canula, I hope you avoid the cording. Hope the anti sickness works. I had round 2 yesterday. The hair will go fairly fast once it starts. It may be worth getting some head scarfs or similar for the heat and while it's falling out. X

[curlyh]

Hi Ladies

Haven't posted in a wee while but have been keeping up with you all.  Had in laws staying and as all family are 200 miles away enjoyed the distraction..they left just before my 2nd round of FEC on Wednesday.  It went ok but took till the 3rd cannula to get my vein to accept the E part my arm was painful this time when it was going in.  Was warned my arm could continue to be sore but so far ok, I am dreading if I get cording in this arm too as I have it on the mastectomy side where all lymph nodes were removed despite doing all exercises given. Was given different anti sickness and the one to take at night has been great actually slept really well last night, no appetite but eating bland foods. My hair has started to fall out loads now wore a sleep cap last night to catch it all..but I think a shave is on the cards it is a bit annoying dropping hair everywhere..I got my wig but not sure ...I think my own hardresser might need to work some magic on it...also worried about going out in the wind where I live there is always wind...maybe hats will be better...good luck to all having treatment and coping with the side effects x

[Mai7]

MaryAnn and Alice, I think the fear of hairloss is actually worse than when it's gone. I had a shoulder length Bob and had it cut into a jaw length Bob ready for chemo. I think getting it cut shorter does make you feel like you have some control, as does shaving your head after your second treatment when shedding starts to get annoying. Hair is so strongly linked with your identity and you want to feel like "you" and controlling who that "you" is with haircuts helps you to cope with the changes you are going through. You decide a step at a time what that should be.  Keeping a good perspective and sense of humour is essential!

[Mai7]

MJK, now I'm thinking there should be a Tribble remix!