May 2017 chemo starters

[WolfEE]

Morning all,
Quick question. I read a lot about people having bone scans. I've had a CT scan that was checking my organs does this also check bones??
X

[MJK]

Treehouse delegating is a vital survival skill and not a sign of weakness. Glad round 4 was ok Rosie and I love your cold caller technique. My son waved to the royal family (including the queen) as they rode to Ascot and they waved back. It's a local tradition. Meanwhile, I had a lovely reflexology session which was tiring but really effective. Hopefully I'll sleep better tonight...

[Mai7]

Rosie, I laughed out loud about your cold caller strategy! That must have been the first time ever - getting an apology from a cold caller. You must be really pleased to have your last EC. My last one is next Thursday then I switch to Docetaxol.

Treehouse, it's ok to be a marshmallow.

MJK, hope your son enjoyed his right royal trip and got a peep at Liz!

i had a lovely lunch today, a friend came by and she brought me some flowers and a big tuna Niçoise salad to share and we sat out on the patio. It was so lovely. She just had another friend diagnosed with BC only 2 days ago so I told her to get her to call me if she needed someone in the club to talk to. Is there a BC epidemic or are we reaching a certain age of increased probability?

[treehouse]

Thanks Rosie. I managed 2 hours out of bed. Hubby is packing youngest for school residential and mum is cooking dinner. I have abdicated for today 😭

[Rosie65]

Hope you're feeling a bit better now treehouse, the steroid dip is not nice, hopefully sleep has helped. At least it's cooler today

Did you manage to get a dr's appt Trisha? I got some more Gelclair from the chemo unit today.

Im back from the last EC infusion, feeling ok but at the stage where I dont know what to do with myself, as difficult to concentrate on anything. Hubby is at work and daughter has just gone training (athletics)

Some guy selling home improvements just knocked and I answered with no headwear and looking a bit sleepy as thought daughter had forgotten something. He looked horrified and apologised for bothering me - one way to get rid of cold callers!

 MJK - hope your son got to see the queen

[MJK]

Yes, his childminder is taking them to Windsor Great Park so they can wave to the carriages. Now taking Tribble for a stroll.

[Trisha69]

Ladies Day at Ascot?
Definately cool enough for a wig today 🙂

[MJK]

Big hugs treehouse, some days just getting through it is an achievement and your body just needs rest. Hopefully it will be cooler. Sleep well. X

[MJK]

I hope round 4 goes ok Rosie65. Last round of red pee! I hope the doctors appointment goes well Trisha. I'm off to do some coursework while my son goes to wave to the queen. Just wondering I it's cool enough to put the wig on...

[treehouse]

My turn for the steroid crash. Completely wiped me out last night. Heat not helping. I feel nauseous, dizzy and ache. Thank the onc for pain meds. Today I sleep. This is like round 1 all over again 😢. Not a good day.

[Trisha69]

Have appt this morning x Tried the bicarbonate, Im a silly moo, tried it after taking morning pills and almost threw them all up! PS NO hair and no make up, bet you look gorgeous.

[Rosie65]

Trisha - I really feel for you, it's definitely worth seeing the doc and getting it checked. I was convinced I had an infection it was so painful but onc said it's mucositis, the mouth area also having fast growing cells which are attacked every time we have chemo. Hope you get it sorted today.

WolfEE - definitely going to try the bicarbonate this time, have round 4 today, last EC Yay!!!!!  Medicine cabinet at the ready, it's stacked full of every mouth wash, gel etc that's been mentioned

Just checked out my bod like look in the mirror - always a shock in the morning - no hair and no make up!

[Trisha69]

Thanks WolfEE will try that. Re down below, expecting probs after finishing antibiotics, so thanks again for the tip! x

[WolfEE]

With the bicarbonate I boil some water (not fully boiled just warm enough so it can dissolve) then I don't actually measure I just tip loads inand mix it up. Then just swish it about in my mouth and spit out.
When I have a bath again I put loads just keep sprinkling in the wather I think you need quite a lot and then try and soak for 15 mins.
I go through loads I'm not sure if I'm putting more than needed??
This time my mouth / down below has been better and I'm sure it's the bicarbonate it was my oncologist that actually told me to use it.

[Trisha69]

Temp was 37 before paracetamol.  Im wondering if its part Hayfever as well as ulcers in mouth.  See what Doc says.  I bought Bicarbonate of soda yesterday but not sure how to use it on my throat.  CHemo brain 🙂 x

[WolfEE]

Oh no sore throat! Has your temperature been ok? Don't forget paracetamol can lower your temp so make sure you take it b4 you take them.

[Trisha69]

LOL!   I have a post it note above the lap top, a smiley emojii  with chemojii written underneath.  Went to bed at 6pm and at 8 rang hospital, my throat is terrible.  Anway took paracetamol then ibubrfoen and a sleeping tablet and slept from9ntil 3am!!  🙂  Waiting stick my head out the window breathe in the trees!  Calling Docs at 8pm, the unit reckon it needs looking at and a prescription for something stringer, my swallowing now affected. xx

[WolfEE]

Bod
I didn't know who bod was but have just googled is it the 70's kids programme / book (no need to answer it must be the likeness is certainly there)
😂😂😂😂😂 😛
At the moment I'm laughing Bod, wish I was sleepy chemojii bod 😴

[WolfEE]

Chemojiis - that's brilliant. Trisha69 is that what comes about when your wide awake in the middle of the night when the rest of the world (well most) are fast asleep your laying awake you think up chemojiis 😂 Xxxxxxx

[Trisha69]

I have renamed the emojiis  🙂 Chemojii's.  My Bod is called Sean, after Sean Connery.  So sexy!! 😉

[Wandestrong]

Thanks for sharing your experiences! Pleased with your good news AnnieA, definitely motivating to know Chemo does work!

[Mai7]

MJK, That doesn't help at all - we all look like bod! 😐 😑🙂😊

[Mai7]

That's double great news AnnieA, I'm so pleased for you. Will you be celebrating with a cup of peppermint tea? 🎉 ☕️

[MJK]

For those of you wondering what people look like, my husband has just told me I look like Bod. 😊

[katie11]

Fab news anniea!!!!! Xxx

Good day all round.

Hope you are getting there Anniej xx

[busybeeS]

Wande, I found the 1st was the worst as I was anxious as I didn't know what to expect. I had mouth ulcers (v minor) on the 2nd, and the 3rd, so far, there has been less SEs, prob because I've got more of an idea what's going to happen when, so pre-empt it.
AnnieA, so glad you've had a good news day and that the chemo is shrinking the tumour. So pleased for you.

[misyangel]

Wandestrong I found my symptoms easier the second time round, think that was because I learnt lessons from first sessions and rested a lot on the first week, second and third week I felt normal. Main thing I noticed was I didn't have much of an appetite during first week whereas on my first chemo I couldn't stop eating on the first week.  Good luck with your treatment tomorrow 

[Anniej]

Hi Wandestrong, when I set out on this journey I was told that the effects of FEC would be cumulative, and I have to say, that for me, it has proved true .  I've had no side effects such as ulcers etc, but fatigue has been my enemy. Doesn't mean it will be for you, though. I'm 70 and have had the dose adjusted so I can manage better. Had my third session last week and chugging on. Everyone is different, as these posts show. Good luck, and sending positive thoughts. X

[Anniej]

AnnieA, how great is that news?! So very very pleased for you. Onwards and upwards. 🍀  X

[WolfEE]

AnnieA, that's made my evening I'm so pleased for you such wonderful news. Can't even find it gosh it can't get any better than that. And the genetics result - good, good day 😀 Xx

[MJK]

AnnieA that's fantastic news all round. 🎉 it's great to hear when chemo is working as it reminds us why we're being put through this. 😊

[AnnieA]

Hi ladies I just thought I'd share my good news for the day. I had my results for my BRCA gene tests and they came back negative. I also had an appointment with my surgeon to discuss my surgery options for after my chemo. He did an examination and is now unable to find my lump, which is fantastic news 🙂 x

[Wandestrong]

They gave me a shower cover, which I wasn't expecting as I already bought one on eBay and a tubigrip-like dressing but I'll see if I can get a plain black or brown one or perhaps something colourful, to enable me to keep wearing my sleeveless summer dresses. I'll have a look at etsy, thanks! X

[MJK]

For me the cover they used was fine but their shower cover cut off my circulation.

[Trisha69]

They didnt give u one at the hospital??

[MJK]

For more fancy /expensive PICC line covers see etsy.com

[MJK]

Hi Wandestrong, good to hear PICC line fitting went well. It will be a bit sore for a day then no problem. Shower cover I have a Limbo which gives a good seal (about £15 on Amazon). For covering, I've tended just to wear long sleeves but a large tubigrip cut to size covers it for extra protection. I have a bouncy 4 year old but haven't had a problem as it's pretty well secured and after looking at it he's left it alone. I hope round 2 goes well tomorrow. I've found the side effects for rounds 1 and 2 pretty much the same.

[Wandestrong]

Afternoon all,
Hope you're enjoying the sunshine. I had my PICC line inserted yesterday, took a few attempts (my veins tend to be stubborn like me), but we got there in the end. I have my second FEC cycle tomorrow and would like to know if you found the side effects harder, easier or same as the first. I'm feeling great today, despite the soreness in my arm, so trying to prepare my mind for another round! Also any recommendations for picc line covers? I'm trying to avoid having uncovered around my small kids... abit fearful of my 4year old son trying to yank it out 'out of interest'

Wande x

[Trisha69]

Hi, went out early too, saw an old lady that I look after, and not been for a few weeks, wore the wig!  She loved it.  Home now, and in as little clothing as possible and fan blowing on my scalp.  Heaven 🙂 x

[MJK]

Sounds like you're having a rough time of it Trisha. The hot weather really doesn't help with sleep which makes it worse. I find I disappear of the planet into a chemo cloud over the first week. I managed to get out for a walk before it gets hot later. When I got back it was headwear off and I ran the cold tap over my scalp,😨 worked a treat and no need for styling! 🤓

[Trisha69]

Hi Jo. Been and got some bicarbonate of soda.  Recipie?? xx

[treehouse]

Hi AliOg. Glad our experiences are not making you nervous. I have been better each treatment and knowing that it is working and lump is shrinking makes everything easier to handle. My advice would be to tell people. ( or let someone do that for you if you find it hard) and let people help and show that they care. I still get visitors after 7 weeks. I appreciate everyone of them. You can't do this alone. Don't beat yourself up for needing help. X

[Mai7]

AliOG, glad we can be of help and hopefully reduce your anxiety - action cures fear every time! Your post made me chuckle on the Amazon deliveries. I think the postman and neighbors must wonders what the heck is going on here, like I must be starting up a business or something!

Busybees, feeling good is good to talk about so don't keep away - share the good days! I usually walk a mile or two a day and have been spending bits of the weekend pulling up the stair carpet and painting the skirting boards lately. I wore myself out doing this following my last treatment but now the job is done I can rest back to normal domestic level!

Trisha, hope your mouth is soon feeling better, you must contact the chemo line and ask them for the difflam/benzydamine wash if you're not sleeping or eating properly because of sore mouth. No wonder,you are feeling frazzled and emotional. {U}  Does living by a dairy farm give you unlimited access to ice-cream? I'm thinking that could help with the sore mouth.... 🍦🍦

[AliOG]

Hello ladies, 

Just popping in to say hello from the June monthly thread. Wanted to say that you are an inspiration to those of us still waiting to get started on this journey. My Amazon delivery man has never been so busy! All the tips are really helping me to feel a bit more prepared for next week. 

Hope today day is a good day for you all. 

Hugs x

[Rosie65]

Wow it has been a busy morning -  I'm a bit late to the party!

Trisha - I totally sympathise, the sore mouth, ulcers etc are my main side effect. Everything else is quite minor. I have all the products the others have suggested but Gelclair was most successful although they only gave me 3 sachets. I clean teeth with Biotene toothpaste nearly every time I eat. Use Difflam mouthwash, gingivel gel and gargle with saltwater - and take Paracetamol ( checking temp first) to help me sleep as

it takes the pain away.

Its mostly gone but still have sore tongue and have round 4 tomorrow! Hoping to get more Gelclair as that helped most.

busybee - don't apologise for feeling good. It's nice to hear that someone is not getting too many side effects. Have also been walking most days round old running routes and it does make me feel much better

[Mai7]

Wow, it's been a busy night shift ladies, just catching up! Yes, the oxygen thing, I read about this  in a book called "Radical Remission" apparently the birds start singing in the morning 42 mins before sunrise when the trees start releasing oxygen. So get your share of that free oxygen! 

I've  used Gengigel for sore mouth as an off the shelf remedy which helped a lot but have found the prescription mouthwash much more effective. I have the Gelclair and also Benzydamine Hydrochliride which has been really effective. This round, I've only had mild sore mouth for 2 days instead of 5 and my ulcer went away very quickly.  Biotene products are good for dry mouth.

[busybeeS]

Trisha, I had a couple of mouth ulcers on the last cycle. I mentioned it to the nurse who was giving me chemo and she have me a box of gel clair which is a mouth rinse for chemo patients. It's very expensive to buy and you can only get it direct from manufacturer, but it is available on prescription or from onco ward. Please phone them and ask if they can supply any. The other thing I was advised by helpline was difflam mouthwash, fresh pineapple and vit C tablets.

[WolfEE]

Trisha
Toothpaste and mouthwash are biotene made especially for dry mouth because of illness, medication, depression etc.
You can get on line for store collection at boots. I ordered mine at my Tesco pharmacy and collected a few days later.
I have been using it daily since the start and I'm not sure if so far that has helped prevent mouth sores or perhaps I just haven't through luck had them yet?
I also have a gel ready one that is safe and good 2 use again store brought I'll let you know what that is called shortly. (It's something mai7 has mentioned before and I went and got ready)
Hope you have a better day today xxxx

[Trisha69]

WOW  ok, will try it in the morning, I always hear the birds not many trees nearby tho.  A dairy farm... might breathe in  more than I bargained for LOL x

[WolfEE]

I got my oxygen head shot this morning. I love it