May 2017 chemo starters

[katie11]

Think they will be back. I had mine done on Monday ready for tomorrow x

[katie11]

Thanks Mai7.

I've done it! My scalp has been really hurting 2 day. I've washed it and it went really matted and horrible, I couldn't even brush it. So, I've Chopped it all off. It wasn't nice but it's off and I don't have to deal with it!!! Think I need a drink! X

[misyangel]

I am due have my second fec next Friday and I have a appointment the Tuesday prior where I will get given the form to do bloods which means I won't get bloods done till Wednesday, do they phone you prior to chemo if yours bloods aren't right or do they tell you when you get there on the Friday, I would hate to phyche myself up then they tell me on the day of chem that I can't have it 

[Mai7]

Katie, don't worry about your 2nd treatment. I'm on FEC 2 day 6 now and have been even better than last time as I've been able to anticipate which side effects will hit on which days and start using products as preventative  rather than cure. I was a bit anxious before my second treatment and I think it's because you know exactly what's coming and feel a bit rebellious about all that self discipline and whether you will be as good at drinking the water again etc. I've generally had a bit more energy this time. I went to bed early last night though as I was falling asleep trying to watch TV at 8.30pm!  I love how you're testing the wig by the way! General public don't bat an eyelid, whereas nearest and dearest don't miss a trick! X

[katie11]

For those who have had 2nd cycle how was it? Have you noticed any patterns comparing last time? My next one is up tomorrow and am feeling worried as I think I got away lightly last time. Worrying it's gonna hit me like a ton of bricks tomorrow x

[katie11]

Ha ha lady garden!!! I decided that would be too weird seeing that fall out in bits so I got the immac out. Hair really falling now. Picked up my human hair wig today and decided to keep it on around Morrisons to see what looks I got. None! It is just me being paranoid. Next big test - school run. Sure my boys will have some interesting comments lol xx

[treehouse]

Hi Maggie. Sorry to hear you are having a tough time. So when do you start? Good luck Thursday .

[maggie aitken]

i got  serious case f what is named, with commendable restraint, steroid intolerance which really had me bouncing off the ceiling. it will be interesting to discuss what alternatives there are on my pre therapy visit this thursday

[treehouse]

Hi raitchr. I too have started shedding today . Lady garden Lol 😁 that's a lovely turn of phrase.

[treehouse]

I was told that they have so far identified 10 different types of breast cancer. This has enables more targeted treatments. I feel really lucky I found it and have the drugs available.

[Raitchr]

Morning all. Just catching up on posts.

Steroids, I was told to take 8am and 12pm never after 2pm to minimise sleep disruption. I was wake 3am on first cycle so started taking them earlier to get them out of the way so I could power nap in the afternoon.

Water, drink 2 litres day before, day of chemo and day after

Sickness, take tablets before nausea take hold, more prevent than cure. I took mine for 4 days.

Hair, woke up this morning, my eldest son's 14th birthday, my hair still hanging on. However just showered and many strands fell out. Also lady garden is on its way down the plug hole, like I had overdone it with Immac. OMG on the slippery slope to being as bald as a coot...

Heather

[Mai7]

Wow treehouse, that's quite the mix you have going on there! So lucky you spotted it. Ah, you're the complety the opposite to me as I'm ER+/Her2-  My lump is immediately behind the nipple and outwards into the ducts/lobules. I think her2- is slower growing but a bit more stubborn to respond to treatment from what I've read. I'm expecting to be introduced to Tamoxifen at some point for ER+. I've had fibroadenomas since age 18 so got used to the idea of lumpy boobs early on but this one came along and tricked me!

[treehouse]

Hi Mai7. I am ER neg but Her2 positive grade 3 IDC. I am on Herceptin, perjeta, docetaxel and carboplatin. I have all 4 one after the other on treatment day. First one took 8 hours. Even the nurse said I was booked in for some long sessions. My lump is quite small but an aggressive little beep. I have very small boobs and it is high up on a rib so I could actually see it.

[Mai7]

Treehouse, what cocktail of drugs are you on? Just curious to know about pre-surgery drugs as I'm in the same position as you: stuck with the lump inside me until they can shrink it enough for surgery.

[misyangel]

It's great to get first one out the way wolfee,   I agree with Kate11 make sure you rest even if you feel fine as I did to much also and ended up exhausted.  The medication did keep me awake to and after a few days it finally caught up with me

[treehouse]

Good luck MJK hope it all goes well. The last day feels strange but it's good to get the treatment started and I feel it's making a difference already. I really wanted surgery first. I wanted this thing out of me! But I was told my best chance was these particular drugs and they are only licensed for pre surgery so I am happy to do as I am told. And the lump seems less. Take care every one.

[MJK]

Glad it went well yesterday WolfEE. So sad about Manchester and once again the NHS will be doing its amazing work with the injured. I'm just about to have my PICC line put in then it's off to work for the last day until I'm through chemo. I hope you have a good day everyone.

[Anniej]

That's good to hear, Wolfee. Keep drinking plenty of liquids as that will help with headaches and also constipation with drugs. I think it's the steroids that has us twitching so early. Someone said to take morning and lunchtime, not night. Have to say it made no difference to me!  One down,miso that little bit nearer the finishing post.☺️. So awful about Manchester. 💔

[treehouse]

Glad round 1 went well wolfee. I agree about the water and found snacking settled my stomach. May your side effects be minimal. Sending hugs.
Such sad news this morning I don't understand! 😡

[katie11]

Sorry treehouse - meant to say yes there are sliver linings to all this, the little things like taking your kids to school, realising who your true friends are and that you do appreciate life a lot more. Even though I'll be on weekly chemo by the school hols I'm glad I'll be at home with my boys. I usually miss most of it and end up shipping them about . Xx

[Mai7]

Glad to hear your first chemo went well WolfEE, take it easy and keep drinking the water!

Katie11, I just read the news after seeing your post, that's terrible news.  Such tragedies bring home to us how fragile life is. Knowing you have a chronic illness means you know you have calculated risks (which are treatable) but those victims were completely unaware of any risk.  💕

[katie11]

Glad it went well wolfEE. Get some rest even if you feel fine. I felt fine and did too much and ended up exhausted!

Woke up to the horrible news of the Mancheter attack. I live in the Manchester area and am feeling really sad and emotional. It's scarey to see it so close to home. I only drove past the arena yesterday on my way home from genetics test . Makes you realise no matter what you are going through there is always someone in a worse position. Stay safe everyone xxx

[WolfEE]

Hi All,
1st FEC done yesterday, the day went better than I expected. Arrived at the hospital for 9:15 and was on my way home 1pm.
So far I feel great no sign of sickness I did have a headache but paracetamol has helped although I'm trying to limit as it can give lower temperature readings but for now I feel mostly unaffected (although restless as you can see I'm writing this 3:30am!!) but I feel well, hope it continues.
Xxx

[treehouse]

So I have decided to count silver linings...they are there if you look closely. Today I got to pick up my boys from school again ( I normally work full time so miss out) Today my youngest in year 6 had THE LESSON! ' about special hugs as he puts it' it was hilarious talking about the video they watched about how his body will Change. He has finally worked out what my tampax in the bathroom is for. I have been quite open with my boys but its so funny hearing him 😂

[Sarah19]

Well done to those who have braved the shave. It made me feel so much better doing it myself so hope it has done the same for you. I've never talked supplements with nurses, don't think they are too keen though. I was told eat what you want when you want it, no need to worry about being particularly healthy during chemo. Think they were more concerned that people just eat during chemo.

[Mai7]

Aw, that's lovely Katie, they miss you! I got some flowers delivered from work in Friday. Isn't it lovely how everyone is so supportive and really kind. X

Treehouse, yes getting rid of the malfunctioning real hair felt quite liberating. I quite like the army look on me (it was in a jaw length Bob before).  My partner, this morning, after shaving it said "you're in the army now" and I said "yes, fighting for life".  The wig is comfortable and a bit better than my real hair lol! 

[treehouse]

Oh Katie that's awesome 😁 happy tears allowed

[katie11]

Had to share with you. I've just had a hamper delivered from work with fruit, books, magazines and biscuits. So made up it brought a tear to my eye. Must be having am emotional day lol xx

[treehouse]

Well done Mai 7. It must be a big difference between thinning hair and a new wig but that doesn't change the fact that you look great. 😊 hope it's comfortable ? Does it feel different without hair ?

[katie11]

Well done Mai7. Sure your mum meant it. Shes just knows it's different from your old style. I'm fed up with mine coming out now. I daren't wash it I'm too afraid. It's bad enough when i brush it!

Hope all went well MJK

Treehouse glad ur now feeling better. Genetic test went well although have to wait 6-8 for results.

X

[Mai7]

I got my partner to shave my head this morning to a grade 2. I decided I was caught between hair and no-hair which makes it tricky with the wig. I felt a teeny bit emotional as I watched my hair fall to the ground. So now all shaved and wearing my wig. When Mum called in though she immediately said it looked great and I thought "it's obviously, obvious that I'm wearing the wig, otherwise she wouldn't have noticed quite so much" 😂 

[treehouse]

Thanks MJK. Good luck today.

[MJK]

Just waiting for my introduction to chemotherapy session. I think medics are wary of supplements interfering with the drugs. Noni juice is a non no but Japanese mushrooms (maittake, shiitake) are used widely in Asia and govt approved in Japanalongside chemotherapy l as they boost your immune system and can reduce chemo side effects. Fine with chemotherapy but can cause issues with tamoxifen.

[treehouse]

Thanks Mai. You make me laugh- Gollum!😁 If you feel ready brave the shave I know that is a tough decision. Still no hair change but scalp tingles. Happy to report face is calming down makeup doesn't burn anymore so I look half decent for the school run.

[treehouse]

Thanks for reassurance Katie. Good luck with genetics councillor. Mine was great offered to test my mum and put a rush on my results as that will help decide my extent of surgery. 😊

[Mai7]

Morning treehouse, my lump feels slightly different, I think the swelling seems to have gone down a little as originally my nipple was turning outwards but has now realigned (and I'm delighted to share the intimate details of my nipple alignment with everyone!). The hard centre of the lump feels a little more defined too (as in, it feels more lumpy rather than just a dense mass). I, probably like you, keep thinking maybe this is wishful thinking but I do think there is a slight difference. The Oncologist expects you to be the first to notice so this is a good sign. X

Is anyone else finding the top of their head getting a bit tender as the hair falls out? I've had to change my parting to the opposite side to cover up a thinning patch on top. Im thinking I may get my partner to shave it all off tonight rather than keep coping with shedding and thinning and transitioning through a temporary Gollum state! 

[katie11]

I'd say it sounds good treehouse. Does it feel as swollen? I've had my surgery so can't really compare notes on that one! I'm off for my genetic testing today x

[treehouse]

Morning. Has anyone noticed any changes to lumps? Mine has been different since biopsy and a marker clip fitted and I was too scared to keep checking. But it definitely feels different again today. That has to be good doesn't it?

[Anniej]

Same here, Treehouse. Onco not keen at all on supplements so didn't push it. Upsetting a delicate balance was how he put it. I miss them as I always thought they were extra protection, but as my SE's last time were minimal, perhaps not?

[Raitchr]

As good as my friends are, they haven't been on this journey themselves so its good to have virtual friends on here who know exactly how it is!

H

[treehouse]

My onc appointment is Friday too. We can compare notes after. So glad to share this journey with you. (sorry we had to)

[Raitchr]

Was told ok for multivitamins by chemo nurse but haven't taken any this time. I see Oncologist on Fri so will take the packet and show him before I take any.

[treehouse]

MJK that's funny. What supplements are people taking? I asked chemo nurse and she was not keen. Just advised healthy eating. Anyone had any advice on this?

[Raitchr]

Good to hear we are all well, enjoying our good weeks, heading into round 2 together ❤

Heather

[MJK]

My hubby has just come in with the cod liver oil and a serving spoon. He didn't want to spill it. 🤔

[katie11]

Thanks ladies , glad we are all doing well. I think this forum is what we all need to keep positive and pick each other up when needed. No matter how good our friends and family are no one quite gets it like us xx

[Anniej]

Katie, sending a big hug to you and your friend. What a friend, we should all be so lucky.

I've just been going back through the threads and thinking how very fortunate , or lucky, or well prepared we have all been so far . I think we are indeed wonder women to have tolerated the treatment so well. Big pats on the back for us then! 😇  I am going to enjoy every minute of next week before round 2 on Friday. Love and hugs to all. X

[treehouse]

Hi Katie. Its great to hear everyone is doing well at the moment. I have been out and about with my family and feel well. I know that helps them as much as it does me. Looking forward to a good week before round 2. I know what you mean about supportive friends. I too have been blown away by kindness . My advice is tell people, if they don't know, they can't help and support. 😊 Today is a good day.

[katie11]

Hi ladies, just catching up on what I've missed whilst been away. Thanks for tip on book sounds an interesting read! I've also been talking to a mum in my sons class who is also going through this at the minute. She is due to finish chemo end of may. She has been having T and said she's just been feeling tired as time has gone by. She got swollen ankles and her veins now ache but she was better on T than EC so hopefully we will be fine.

Know what you mean bout the brave comments. I don't feel brave, this isn't something we have chosen to do. We are forced to deal with it.

I had a nice surprise from my friend when I got back today. She had really long hair and has had it cut into a bob to support me. She's then donated her hair to a childrens charity. You really do find out who your friends are at your low times don't you xx