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Apri 2016 chemo starting? Please join!

LMB212
Member

Re: Apri 2016 chemo starting? Please join!

Hi all I have my Pre assessment and first FEC T on Wed so thought I would join this thread. Had 2 lots of surgery lumpectomy and SNB followed by skin sparing mastecomy and node clearance. Cancer all gone so now have chemo as a belt and braces approach plus as I was HER2 I need herceptin. Am going to try cold cap . Will I need a warm blanket I have noted others saying it is recommended. Lou x
Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

Morning sunshine, I don't have migraines but my daughter does so you have my sympathy as I see how bad they are. A friend of a friend who I've got to know since being diagnosed has migraines and decided to cold cap anyway. She did have a migraine after each session she said, but she kept most of her hair which was more important to her. So it seems that the cold cap may be a trigger it's whether you want to try it and see. I'm cold capping myself and didn't find it too bad in terms of pain. I took 2 paracetamol half an hour before then every 4 hours the rest of the day to stave off a headache and it worked. I'm not sure if you can take migraine pills as preventers? Good luck whichever way you decide xx
sunshine1
Member

Re: Apri 2016 chemo starting? Please join!

I went for my pre-chemo assessment today, and was told that as I have migraines at least once every 3 months..these are considered as regular. And they highly recommended against the cold cap 😞

Anyone else been told this? Or have had migraines and gone ahead anyway?
Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

I'm not good with the steroids either was exhausted but couldn't sleep felt really jumpy and dizzy xx
Loolyboo
Member

Re: Apri 2016 chemo starting? Please join!

Helly, I felt the same on my first one infact I cried! How embarrassing 🙈
The second one for me was so much easier, just wish we didn't have to take steroids - they make me so emotional & anxious for 2days after I've finished them 😩 x
helly18
Member

Re: Apri 2016 chemo starting? Please join!

Looly that's good to know, I was terrified  the first time so was hoping this one will be a bit easier as you know what to expect, just hope tweaking the anti sickness drugs make a difference. 

helly18
Member

Re: Apri 2016 chemo starting? Please join!

It is mandatory (i am sure they are prescribable lol) to have treats while able Smiley Very Happy I had 2 glasses  zinfandel the other night and was nearly upside down on the couch as it's been that long! Enjoy while we san x

Loolyboo
Member

Re: Apri 2016 chemo starting? Please join!

The second one, had exactly the same side effects as first but found it a little easier as I knew what to expect 😊 x
Leo
Member

Re: Apri 2016 chemo starting? Please join!

Evening all...

Just been out for a current date night with hubby and it all tasted ok.. weirdly the nasty ice cream desert thingy was good too.

Pixie hair cut done, wine ad chocolate all the way... we deserve treats when they taste ok!

I had naff all sleep for the first week or so and was told the anxiety pills are fine in the mix... if they help then I would take them.

Has anyone else had a wig fitting nightmare session yet(ie I have to go back in two weeks as none of them would fit my head!) Just wondering if there were any fellow big heads out there with advice?!Xxx

 

Night all x

Zoe2016
Member

Re: Apri 2016 chemo starting? Please join!

How's round 2 ? Same side effects as first time round or worse? Enjoy your wine, I caved and indulged in chocolate last night X
Loolyboo
Member

Re: Apri 2016 chemo starting? Please join!

I'm 12 days into my second FEC & just had my first glass of wine since Dec & it tastes lovely! 😊
Have a great weekend everyone xxx
Ali-B
Member

Re: Apri 2016 chemo starting? Please join!

"Pixie" it Helly - it'll make it more manageable and the hair doesn't quite fall out all over the place in such a dramatic way.

Ali xx
helly18
Member

Re: Apri 2016 chemo starting? Please join!

The hair is going today, it's coming out in handfuls and as i was arranging picking up the kids next week with one of the mums the wind was blowing strands all over her!😕

sunshine1
Member

Re: Apri 2016 chemo starting? Please join!

Are you not able to take anything to help you sleep? I've been given pills to try in the run up to chemo next week as I've not been sleeping due to anxiety.

Was hoping I'd still be able to use them if necessary!
Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

You made me chuckle with the rollers!! My dogs are same if I get up looking at me as if to say do you know what time it is?! I've read entire books during the night on kindle in the last couple of weeks!! Xx
helly18
Member

Re: Apri 2016 chemo starting? Please join!

Hi Sarah,  no I got up in the end, dogs looked at me like I had lost the plot! Everytime I nearly dropped off oh snoring like a hog.

 

Internet shopping is becoming a bit of a hobby and I got so exited  about the price of some lovely fast heated rollers that I nearly bought them forgetting  for a moment I won't have any hair for quite a while 😕, must be the lack of sleep!

Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

Morning Helen, hope you dropped off in the end. I've been really struggling with sleep, I've had some hypnotherapy and it's really helped, not sure if it's something you've ever tried but worth a go maybe xx
helly18
Member

Re: Apri 2016 chemo starting? Please join!

Insomnia city,  been awake since 2.30 and can't blame steroids as iam not on any grrrr

helly18
Member

Re: Apri 2016 chemo starting? Please join!

Mine where the same and I couldn't draw a pair go save myself that's why I thought go for it!

Zoe2016
Member

Re: Apri 2016 chemo starting? Please join!

My brows are barely there as is, due to over enthusiastic plucking as a teen, but even on my most artistic days I don't I think I could draw a pair on. Don't want to look in constant shock/anger x
helly18
Member

Re: Apri 2016 chemo starting? Please join!

I need a slight repigmentation on one of mine and have to ask oncologist when it would be OK to do. It's not a problem if I have to wait until end as a bit of brow pencil sorts it out
Zoe2016
Member

Re: Apri 2016 chemo starting? Please join!

Thinking it may be the way to go, if my eyebrows decide to fallout too. Just not sure how they feel about tattooing whilst on chemo, another question to ask. Thanks ladies x
helly18
Member

Re: Apri 2016 chemo starting? Please join!

Yes I did,love them as sarah said look a bit "defined when first done but wish I had it done years ago.
Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

Hi, my friend has really thin eyebrows so had hers done, nothing to do with chemotherapy. They were nice once toned down a bit harsh in the first week or two, she wished she had gone a few shades lighter, may be worth bearing in mind xx
Zoe2016
Member

Re: Apri 2016 chemo starting? Please join!

Quick question has anyone considered, semi permanent eye brows? Has anyone had any experience of these? X
helly18
Member

Re: Apri 2016 chemo starting? Please join!


@Ali-B wrote:
Hehe 'fec off' love it Helly!

Xx

*snort* i know you have to be careful what you say lol😊

Ali-B
Member

Re: Apri 2016 chemo starting? Please join!

Hehe 'fec off' love it Helly!

Xx
helly18
Member

Re: Apri 2016 chemo starting? Please join!

Hi misty have sent request,  you should see white/black spotted  greyhound, i also haven't put anything on fb bc related x

diddy23
Member

Re: Apri 2016 chemo starting? Please join!

Hi Misty, I just sent you a Facebook add friend request- Juliet Fitzpatrick xx

Ali-B
Member

Re: Apri 2016 chemo starting? Please join!

Hello Ladies,

 

I noticed there was a roll-call which I missed a while back so I'll reply to Misty's list.

 

I'm Ali-B - 46, married to a great husband and kitty-mum to two cats and live in Surrey (no I am not posh)! Diagnosed Christmas 2015 and started chemo late Feb 2016! I work in IT and am desperate to get back to work it can be stressful at times but I really enjoy my job and love my colleagues who have been so supportive during this time. I am learning to play the guitar and it has been a saving grace during this time. But *BOY* I can't wait to think on planning a nice holiday when this is all done - mainly because I have no idea where I want to go!! 🙂

 

xx

 

 

 

 

Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

I'm keeping everything crossed. I've got really thick hair and tons of it, I had it cut into a short bob prior to chemo 1. A bit of shedding no one but me would notice, but it depends how much comes out xx
helly18
Member

Re: Apri 2016 chemo starting? Please join!

Day 13 here also but wasn't brave enough to try cold capping (or cut it now lol). It's prickly and I feel like I have nits (although  I've never had nits!) so am presuming it's about to fec off in the not to distant future. Fingers crossed you don't have much shedding after the cold cap x

Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

Helen you have my sympathy, big hugs I'm exactly the same, nothing yet following cold cap but I'm only at day 13. If you aren't brave enough to cut it all off then don't give yourself a hard time about it. Xx
helly18
Member

Re: Apri 2016 chemo starting? Please join!

I wish I was brave enough to cut my hair off now because the waiting for it to start coming out is getting on my nerves! I seem to be finding more strands about but that could be cos I can't stop running my hands through to check 😕

Bex1980
Member

Re: Apri 2016 chemo starting? Please join!

Hi Misty

 

I've just sent you a friend request on FB, from Rebecca Jones.

 

Beccy

 

xxxx

Leo
Member

Re: Apri 2016 chemo starting? Please join!

What a busy thread!

Thank you for getting up the Facebook group idea.... I have just friend requested you on it Emily.......

Big hugs.... 

Looking forward to a good old kip at some point soon...... xxx

Love to one and all xxx

Leo

Lottie47
Member

Re: Apri 2016 chemo starting? Please join!

Thanks Sarah and Becky, I will be using a paxman machine, so thanks for tips. I have been to chemo centre, was worried what it would be like, but was pleasantly surprised at how friendly everyone was and how comfy it looked, there was also option to have treatment in a side room if I preferred. I have the headbands and conditioner, but will look into the tea 😀👍🏻 Xx

Becky2
Member

Re: Apri 2016 chemo starting? Please join!

Emily I've just sent a friend request- Rebecca Dorkins with a pink background photo!

Thanks

x

 

Becky2
Member

Re: Apri 2016 chemo starting? Please join!

Hi, best of luck with the cold cap- i did it for my first one on Thursday. www.paxmanscalpcooling.com has some tips - I don't know if you've had your pre-chemo appointment or been told but take a head band for the front of your head and some spray on leave in conditioner. Also I found drinking lemon and ginger tea while the cap was on helped.
I found it OK- had a headache for the Thursday and Friday but was ok. Best of luck!
x
Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

Thank you and welcome lottie, I cold capped on my first one 6th April I'm having 3 EC and 3 T, it wasn't horrendous for me so good luck xx
Misty
Member

Re: Apri 2016 chemo starting? Please join!

Sarah - it is a secret group so hopefully hidden. Please do check though that it is hidden at your end. I don't want to out you. I am also not 'out' on Facebook mainly because I have loads of connections, but a lot are vague or ancient and I can't face the deluge of responses I might get if I go public. Might do at some point, but we shall see.

Keep the friend requests coming in folks as this enables me to add you to the group.

Xx
Lottie47
Member

Re: Apri 2016 chemo starting? Please join!

Emily, I have messaged you via Facebook x
Lottie47
Member

Re: Apri 2016 chemo starting? Please join!

Hi Ladies, I am another April chemo starter, lucky me!

 

I was diagnosed on Feb 17th following a routine appointment for mammogram. I had not felt any lumps, and as I am under the age for normal screening, I was lucky that I was called early. 

 

I had had a therapeutic mammoplasty on March 10th which my lovely surgeon removed the lump with good clearance although I had to have auxillary node clearance surgery on March 24th. MRI and CT scenes were clear which was a relief. This Tuesday I am having a portacath inserted and my first chemo session is this Thursday. I am having 3 X FEC and 3 X T. I am planning to cold cap as the original operation has left me with one E  size and one C size boob so I am already pretty odd looking so fingers crossed I can keep as much hair as I can 🙏🏻. Once chemo has finished my Dr has recommended hyper fractionated radiotherapy, has anyone any experience of this?

 

This forum has been a godsend with tips and advice. Good luck to everyone going through this process, it's definitely not easy but feel part of a good group being on this site 😀

 

Lottie xx

Zoe2016
Member

Re: Apri 2016 chemo starting? Please join!

I Emily I've FB friend requested you, Zoe Rothwell x
sunshine1
Member

Re: Apri 2016 chemo starting? Please join!

I've added you Emily x
Sarahkears73
Member

Re: Apri 2016 chemo starting? Please join!

Hi I will search for you but just wanted to check is it a 'hidden/secret' group as I don't mention breast cancer on Facebook, complicated, lots of reasons xx
Misty
Member

Re: Apri 2016 chemo starting? Please join!

OK folks, I have found out how to set up the group, but need to invite people to join in order for the group to agree to let me start it.

 

Could at least one of you find me on FB (my full name is Emily Stokes Hotchkiss and there's a picture of a white dog on a green background) and friend me. Then I can invite you. Ultimately that's what we'll all need to do in order to join the group (i.e. friend each other so I can invite you).

 

xx

Zoe2016
Member

Re: Apri 2016 chemo starting? Please join!

Misty: I had my mastectomy on the 15th March, wound should of healed within 10 days so shampoo and conditioner should not be causing the pain, unless you have noticed any weeping areas, if this is the case you need to contact your breast nurse.
Did you have any seroma, I found area became tight as seroma dispersed. I found that I had sharp pain at some points and also area became very itchy.if you are concerned contact breast care nurse.

Like the idea of FB group would be easier to keep up with some of the conversation.

Hugs to all x
Becky2
Member

Re: Apri 2016 chemo starting? Please join!

Hi!

Hope everyone whos started chemo is doing well.

I started on Thursday the 14th, today has been the first day of feelin okish - slept better last night and have only taken 1 anti-sickness tablet today. Am having 4 cycles of EC then 4 of Taxol.

 

I got diagnosed with Breast Cancer on January 8th, had my lumpectamy on January 22nd. Originally lump was 2 cm and grade 2 but went to grade 3 and a total of 4.5cm was removed during the operation with clear margins. My Breast Cancer was hormone related and ER8 and PR 7/8 positive and HER2 negative.

 

During the lumpectamy they tested some lymphnodes and I had to then have my lymphnode removal operation on February 23rd  and the results were 1/8. Due to that 1 lymnphnode having cells in it i was told i'd have to have chemotherapy.

 

I do not have children and did the fertility freezing which was, after some hard work, paid for by my NHS area.

Prior to January 8th I was a long-haul flight attendent based at Heathrow.

 

Had to have a number of scans before starting chemo - body and bone scan, heart scan and CT scan. The CT scan showed something 'suspicious' on the pelvis so I had to have a MRI the day before starting chemo. MRI was the worst scan i've had so far - partly due to having to keep my arms up behind my head for 40 plus minutes which was painful after my lymhpnode surgery and those doing the MRI showed no interest in this! But was also extremely noisy and uncomfortable.

 

Am hoping to get my results of the MRI when i'll see my oncologist again on Monday 25th-i'll be having next chemo on the 28th, every 2 weeks as my oncologist said this has shown to be a 20% reduction in it returning in my age group. This was discussed at the recent European Breast Cancer Conference which my oncologist attended in March 2016.

 

One down 7 to go!........Best of luck everyone during this treatment,  Rebecca

x

diddy23
Member

Re: Apri 2016 chemo starting? Please join!

Hello all, I hope everyone is doing as well as they can be. I'm feeling okish. Still quite tired and muzzy hedaed nut alotbetter than Friday afternoon when I felt really terrible and just slept. Hopefully, no other side efects will surface this cycle and the tiredness will lift soon. I think I can cope with the fatigue if it doesn't get too much worse. Its just tricky hving to get on with things as the OH is also crocked and needs looking after. 

 

I had a go at my stomach injection this morning without much success. Luckily my medical student son took control and showed me how to do it! He'sgoing back to Uni later so Ill have to do it myself tomorrow.

 

Here's to a sunny week ahead and getting a bit more back to normal. xx


@Guest user wrote:

Good afternoon ladies

 

My mastectomy scar is feeling quite painful and delicate this afternoon. Yesterday is the first time I washed by standing up in the shower and letting water (and shampoo and conditioner) run over my upper body. I am now wondering if the shampoo and conditioner were wise. Hadn't even used soap on the area. Had the op 3 1/2 weeks ago. Had almost no pain at any stage other than the odd twinge and now today getting regular stabbing pains in the scar area. It all looks ok, but wondering if anyone else has had this?

 

Also, I spoke to my friend who had BC 2 1/2 years ago. She had recommended these forums. I said I was finding our conversations useful, but finding it hard to use the actual site because we're sometimes having multiple conversations at once. She said her chemo starter group started their own secret private Facebook group as a way of having multiple conversation threads more easily. Would any of you like to do this? I have never set up a group on FB, but am sure I can figure it out. 

 

Sending you all sunny vibes - so grateful sun is out after yesterday's freezing yuck

 

XX