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November 2016 Starters

Snail888
Member

Re: November 2016 Starters

Sounds a lot like my experience. I felt sick becasue I felt dizzy. Make sure you eat something with the steroids because they can cause indegestion. I took ondansetron at 12 and 12 and steroids at 6, 11 and 4 so I could try and sleep some. Funnily enough the steroids cleared my chest up! Hope nausea subsides quickly. Sleeping does seem the best way if relieving the main symptoms.
Hugs xx
jacksprat2708
Member

Re: November 2016 Starters

Hi Gang.
Well it definitely wasn't as bad as I thought it was going to be !
Cold Cap was horrid initially but manageable ! This will make you laugh... nurses put cap on and tell me it'll be on for half an hour b4 pre meds. So I'm sitting there all nervous , preparing myself, hubby looking at me asking am I ok. After 5 mins Nurse comes back over & asks how I'm doing. Fine I say, strap is uncomfortable but otherwise great. I'm thinking if this is Cold Capping it's s doddle ! Nurse then realised she'd forgotten to turn the pump on on the machine !!!😂 Boy then did I feel it ! Hair crisp when they removed it 3.5 hours later.
Felt ok once home but about 3 hours later felt very sick. No vomiting , but couldn't manage any tea. have slept a few hours but woken up feeling really sick 😩 Sipping my water and trying to find better position to relieve this feeling!
I start 3 days of steroids tomorrow . Have been told will feel great but been warned of a massive 'low' that will hit me emotionally on Monday! Anyone any advise ?
Oh well will try & get some kip x
Truey
Member

Re: November 2016 Starters

Hi Capelmum,

 

Yes, the crawling sensation is the precursor to hair going. Mine started on Day 14 of my first FEC cycle. By Day 18 it was largely gone. Weirdly, I have done FEC 3 and am at Day 18 but still have my hair everywhere else - only the head hair has gone but I guess the t will take some of the other bits.....😕

 

Funnily enough the the hair thing only worried me as it came out. Once it was gone it was strangely liberating not having to think about when it would go...

 

Sue xx

capelmum52
Member

Re: November 2016 Starters

Good luck Fiddlercrab, I will miss you😂
Day 16 hair on legs arms all gone, pubis hair almost all gone but from the neck up all still intact . Have had a weird sensation in my head all day though almost a crawling sensation. Has any one else experience this? Does this preceded the hair loss ?
fiddlercrab
Member

Re: November 2016 Starters

The December thread is up, which is where I really belong. I wanted to say thank you all for sharing your experiences, it's been really helpful to know what other people are actually going through. I shall continue to lurk and maybe post sometimes. Or lots, if December is quiet. Good luck, everyone!

Djroo
Member

Re: November 2016 Starters

I shaved my hair off  a couple  of days ago. I wear a beanie hat in bed as its just too cold.  I know you can buy sleep caps but I just bought a hat from primark. I seem to be losing hair from everywhere but my eyebrows and  lashes are still intact -would be good if I kept them but not holding out too much hope. 

Second EC tomorrow so the cycle starts again. 

 

Sue H-S
Community Champion

Re: November 2016 Starters

Hi Dragonfly,

it is so good to read your post. I did a very similar thing. It helps so much to get some kind of feeling of 'normality' working when we can. Of course providing we are safe from an infection point of view!

As you go through chemo, it may become more challenging and I hope you can keep your routine up for as long as possible, if not all the way through!.

Hugs

Sue x

Snail888
Member

Re: November 2016 Starters

Thabks guys. Sadly gp is stone walling and refusing to print results so ill talk to onc on Tuesday.
As for hair when did it start to shed? I cold capped for 30 mins before and 120 mins after but I may increase that due to lfts.
Feel pretty good today got up and dressed and will get on with some paperwork and exam marking.
As for masks I have a box of surgical ones by the front door and yes I shoild just get out there. Think I will walk to shops tomorrow x
Brilliant helpful thread. Thank you everyone xx
JoJo45
Member

Re: November 2016 Starters

Morning ladies, 

hair is falling out massively today, going to get hubby to shave it off tonight, fed up of getting the hoover out 😳, then I get to wear my wigs which I'm kinda looking forward to, 😀 it's just the bald head at night that I'm not. 

Snail88 I can't work either as I'm frontline nhs and too many sick patients coming through the door.  Missing it though especially on my 'feel good days'.  Hope you are feeling better.  

Hugs to all xx

Truey
Member

Re: November 2016 Starters

Hi Snail88,

 

As you are a teacher it makes sense that you aren't going in to work. I'm also not working and avoiding crowds. I mentioned to my chemo nurse that it might be a bit too careful but she reassured me that there is no such thing as too careful during our neutropenic periods.

 

On the other hand your liver is really important. If your oncologist wants weekly blood tests, I would not hesitate to go in. They will be very careful regarding germs and if your fear is from other patients, then could you get a medical mask from the chemist to cover your nose and mouth?

 

I would discuss your worries ASAP with your BCN or chemo nurse. From my experience ( I'm an October starter), they never dismiss even the silliest or most paranoid questions I have had. They know how tough this is and are always caring and patient. Don't put your liver at risk without talking to them.

 

Hugs and good luck.

 

Suex

capelmum52
Member

Re: November 2016 Starters

Hi Dragonfly and snail888,
Sounds like a good plan on the work front, mine is to aim to do 10 days off and 11 days in work, but like you I can work from home if not up to getting in to the office and o have a choice of locations too, which means if any one has a cold, ERC in one they just let me know and I head to the other.
As you said, if you feel up to working then it really does you good to get stuck in as it, your occupation if you enjoy it is part of who you are so is bound to make you feel better.
Snail888, I am so sorry to hear that you are struggling to get out and about because if the fear of infection, I can understand that as sometimes I catch myself thing all of the germs are around me but I cannot see them, but equally I remind myself that I just have to live life but be vigilant. I have got a large aerosol spray it a Dettol one that can be sprayed on anything and I use it on everything I think might have germs such as my desk, the office copier, the ladies loo, door handles etc, no one bats an eyelid at work as they all know the situation, I personal don't use the work kitchen though as it is probably the most unhygienic place in the world so best avoided ! Latex gloves are good too, I used these when, cooking cleaning etc. My daughter bought me a box of medical ones on the Internet. But most of all I think it would be good idea to have a chat with your BCC or oncology nurses who I am sure can help you feel more confident with it. Equally if you feel better and safer staying at home then there is nothing wrong with that either as the most important thing is that you feel comfortable and happy.
Ladies I wish you not well
Love Fiona x
Dragonfly
Member

Re: November 2016 Starters

Hi Capelmum,

 

It's so good to hear that you have been able to get back to work and felt better by day 8. I was day 2 yesterday and felt OK.....tired and queasy but nothing like the first night.  I work out of a number of different offices and am also able to work from home.  My plan is (subject to SEs) to take the first week off after chemo, work from home in the second week (whilst immune suppressed) and head into the office in the third week....provided there are no bugs going round. My work have been fantastic and are very supportive.  Whilst my job is not an important one (I'm not saving lives or making people's lives better like so many of the people I've met since my diagnosis) but it is really important to me and my self-esteem and feeling normal and valued.  

 

Jacksprat - I just wanted to wish you all the very best of luck for today. I am confident that it won't be as bad as you fear it will be. Make sure you wrap up warm for the cold cap and have hot drinks throuout if you can.  Will keep everything crossed for you. Let us know how you get on.

 

love and hugs.

Snail888
Member

Re: November 2016 Starters

Anyone else here have odd liver results? My Inc wants weekly bloods but I just can't face going in to hospital every week and exposing myself to all those germs. I've managed to get out for a walk today and yesterday trying to conquer my fear of infection but definitely not ready to go where people are. I applaud all of you going into work and carrying on and I really wish I could do the same. I don't feel unwell just really don't want to catch something. Bit weird for.me.as.normally.love to go to shops etc. As for work as I'm a teacher the thought of going in just is scary....
capelmum52
Member

Re: November 2016 Starters

Hi Dragonfly,
I am so sorry to her that you were feeling sick after your treatment. I too found the cold cap the worst of it, but will probably persist with it as now day 15 and all hair on head still intact, can't say the same for other areas though !! I was ok for the first 2 days and then got worse until about day 8 at which point I was feeling like I had been hit by a bus and thinking please put me out if my misery. But by day 10 almost all my symptoms had eased up and by day 11 I was back at work full time and now day 15 and still at work full time and planning to do so until the next chemo. Looking at the first and 2nd week together I am now of the opinion that if this is thevwirstnit can throw at me I can take 6 months of it, so no matter how bad it get, remember it won't last long.
What kind of work do you do? Have you got access to occupational health through work ? Let me know and I will try to give you a few job specific pointers if I can. In the meantime take care of yourself, try to stay positive which I know is easier said than down in the first week post chemo and remember I am hear if you need me
Love Fiona x
Chloe
Member

Re: November 2016 Starters

Dragonfly, I too went beetroot with no temp (not a good look) and had hot and cold sweats... shivers etc. When I spoke to Chemo unit they seemed to think it may have been the steroids???

No definitive answer but it lasted a couple of days and made me cry I felt so rough. I'm hoping next time I can chat to them and see if there's a solution...
Dragonfly
Member

Re: November 2016 Starters

Thank you for your words of encouragement.  I am feeling much better this morning.  Still queasy but have managed to go out for a walk with the dog and am having some soup! The lovely chemo nurse who 'did' me yesterday called me this morning to check up on how I was doing and I mentioned I had thrown up four times. Within half an hour they had called back and said they would give me Emend? next time as they didn't think I should be throwing up.  They are so lovely.  Weird question though....I am having real hot flushes since yesterday...properly beetroot but my temperature is fine (if a little low). Is this a known reaction to the chemo drugs or has my body decided to go into early menopause...just to add to the fun!

 

I've got my positivity back today....it took a bettering at midnight last night when all I could see stretching ahead was months of having my baldy head shoved down a toilet but as you all say....we will get through this and come out of it battle scarred but stronger!!

jacksprat2708
Member

Re: November 2016 Starters

Morning Gang

 

Skye- thanks Woman Happy for your lovely words of encouragement, im feeling a bit stronger about it all this morning.

 

Dragonfly- I feel for you hun. As you and I are only days apart from starting we will probably be going through similiar issues at the similar times !! Im really rubbish with being sick so dreading this SE !(especially when it won't of been brought on by alcohol !) Also anxious about cold capping and have heard stories that this did feel worse than the Chemo itself ! But want to give it a try. Four months does seem a lifetime away but i guess every treatment down is bringing us closer to the end .

 

We can do it ...we can do it...we can to it ( repeating this to myself as a mantra !)

 

try and have a good day gang

xx

JoJo45
Member

Re: November 2016 Starters

Morning Ladies,
Dragonfly ask your oncology team for stronger anti-sickness they should be able to help you. Hope you feel better soon it will pass.
Fiona, my GP prescribed me some omeprazole last week to help with the heartburn which really helps.

Hair update, really on the move now, head feels very tender today. Picked up my wigs yesterday and a couple more hats, this chemo is costing me a fortune 😳 But if we can't pamper ourselves now, when can we 😀.

Dragonfly
Member

Re: November 2016 Starters

Hi,

 

i had had my first dose of FEC today and found the actual treatment process to be reasonably uneventful and painless. I think the cold cap was worse than the drugs.  However, I have felt hideously nauseous from a couple of hours after the treatment finished and have thrown-up 3 times in four hours. I took the anti-sickness meds as prescribed but from reading all the comments here it seems to be about finding the right combo for you.  I am trying really hard to stay positive but the thought of four months of this (with really bad hair thrown into the mix) is depressing. I was hoping to work through chemo but, at the moment, that seems somewhat optimistic / naive.  I can't even imagine being able to leave the house.....any advice???

 

Skye
Member

Re: November 2016 Starters

Hi Capelmum

 

Im more comfortable about my hair now, had a shower tonight and some rubbed off - aw well it's gonna happen anyway. Got lotrps on the top do just patted it dry. Hope I don't end up looking like a pineapple!!!! lol

 

Had my 2nd FEC yesterday and met a lady on the same as me 3 XFEC/3 Tax and her hair had started growing in too. So it might well be the case we're not without it too long. Anyway, we'll save a fortune in shampoo!!! 

 

Big hugs n kisses

 

 

 

Skye xxx

 

Skye
Member

Re: November 2016 Starters

Hi Jacksprat

 

Try not to panic too much - the fear of the unknown is the worst thing. Once you start your treatment you'll feel a lot better. 

 

Feeling scared is normal as is having a wobbly and crying and feeling helpless and so many other emotions that we all go through at one timer another. All perfectly acceptable and understandable given the circumstances.

 

We we will all get through this together. If you need any help of advice uou will always find it here pet. 

 

Big Hugs for Thursday - will be thinking of you. 

 

Hugs n kisses to those who need them. 

 

 

Skye xxx

capelmum52
Member

Re: November 2016 Starters

Hi Jacksprat and Skye, lovely to hear from you.
Jacksprat, I promise you it won't be as bad as you think. I am also FEC and did the cold capping. To behind at on the day the cold soggy feeling of the cold cap took my mind off of the chemo being injected and they wrapped me in warm blankets and gave me a heat pad so that the rest of me stated nice and warm. Also great nodes that the lymph nodes are not affected, you must be very received.
Skye, thank you for the advice on the heart burn I will check that one out with my BCN tomorrow. If it's any consolation my hair is starting to go a little bit too despite the cold cap but I am now so prepared and used to the idea that it is going to fall out I am no longer worried about it. I went to visit a lady on Minday who is just starting her last cycle and she looked amazing and her hair is just starting to grow back. It really filled me with hope x
capelmum52
Member

Re: November 2016 Starters

Hi Ladies and hello to Truey, nice to meet you.
Thank you to so many of you for your brilliant and helpful suggestions on the heartburn. I will definite call my BCN and see if they can prescribe one on the ones you have suggested. Thankfully the dioreah is also subsiding today, even better news the infected wound also looks to be healing now as well !! 😀😀 3rd full day back at work and have moved to a different branch with a little private office for me to work from, so much better for hazard lockdown and the staff there are lovely and are really liking after me. I do feel blessed 😇. Fiddlercrab, I am really sorry that you too have the lymph nodes affected to and that you may be leaving us to Devembers thread, please stay in touch and let us know how you are getting on. I will miss you. I am absolutely thrilled that you will now be week 3 for Christmas as I know that will really mean a lot to you and your son.

Take care ladies and speak soon
Fiona

jacksprat2708
Member

Re: November 2016 Starters

Hi All

 

Just having a wobble thinking about Thursday... 1st FEC and cold capping.

think i have everything i need,  just hitting me that this is really happeneing !!!  . My test results from lumpectomy and auxillary nodes removal came back allclear (thankgoodness) and Chemo, radio and Taxofen all recommended as preventitive. So im doing whatever i can to prevent it coming back but am suddenly feeling scared !!

 

Hope i can sleep !

 

love to all of us going through this x

 

Skye
Member

Re: November 2016 Starters

Hi Capelmum

 

 

Try and get Omeprazole for the heartburn - it should help a lot. 

 

Hope your Xmas plans go well - I'm sure they will. 

 

Im losing hair dart, mainly at the sides and back, but no-where else Unfortunately. Your episode in the shower made me laugh. I guess mind must be working up the way lol. 

 

Big hugs. 

 

 

Skye xxx

Skye
Member

Re: November 2016 Starters

Hi Sarah 

 

Ive just finished 2nd Cycke yesterday and felt tired today,  usual sore head and can't be bothered doing anything. Slept for quite a few hours throughout the day, and still feel knackered. 

 

Re the lumpectomy - yes, your Breast shaoe changes - I had a 2cm tumour and the scar is 4cms long. There is a swelling round the scar (scar tissue) and my hood does look a big indented when I have no bra on, but it's no big deal. My BCN said when I have Rads that will also change the shape and after recovery I will have a new "normal".  Hope this helps.

 

Hope uou uou feel better over the next few days.

 

Big hugs.

 

 

Skye xxx 

Seagull1
Member

Re: November 2016 Starters

Hi regulars & welcome newbies

Been at hospital last 2 days as I've had diarrhoea every day since chemo 2 (15th). Taking max Imodium & still not stopping it. All tests ok but white blood cells very low. Feel sooooo drained. I get IBS diarrhoea usually so they think as its my weakness anyway it's just hitting me harder there. I've got the heartburn too & have been prescribed the lansoprazole daily. It's helping a bit. I've got a nightcap too as my head was getting chilly at night. What do bald men do?!  We've had to cancel our ski holiday at the beginning of Feb which my 2 boys (14 & 11) are gutted about but hoping to do lots of little things to make up for it. Planning everything around chemo dates & Christmas is a nightmare isn't it.  Decided to have our first Xmas just the 4 of us & then if I'm up to it might visit family. No pressure then.  Got to do what we can when we can. Hugs to all. xx

Sue H-S
Community Champion

Re: November 2016 Starters

Hi fiddlercrab

Sorry you have had to find yourself on a monthly chemo thread, but it really is a great place to be for support through this specific journey.  It can seem such a lonley place to go through chemo, as rarely anyone around us knows, what it is like. So many questions, niggles and worried as we go through it. It really helps to be on a thread, where experiences and knowledge can be shared. Rants and raves, tears and laughter are all part of these threads and many, many virtual hugs.

The December starters thread will be up in the nex few days - and, as usual, a lot of tips of how to prepare for chemo will be at the start of the thread.

Hope to see you there.

Hugs

Sue xx

fiddlercrab
Member

Re: November 2016 Starters

Got my start date! It's 6 December (so I'm in the wrong thread...). Also found out that the lymph nodes are involved, and it is weakly ER+ and weakly HER2+, so it's gone off for further testing to see if it's actually HER2+ or not. It feels good to have a plan, and even better to have one that puts Christmas at the end of week 3!

Truey
Member

Re: November 2016 Starters

Hi,

 

My chemo nurse (I'm from the October thread and a bit ahead of you), told me Gaviscon alone won't work as the indigestion is from the chemo effects on the gastric mucosa. To protect it from irritation from steroids, foods etc, you need them to prescribe lanzoprazole or omeprazole. I would call them asap because my indigestion was always worse mid- cycle.

 

Hope that helps.

 

Sue xx

Snail888
Member

Re: November 2016 Starters

I think the heartburn is due to the steroids. Definitely worth asking for a prescription proton pump such as laprozole. I took 1 friday and 1 saturday (chemo was monday and heartburn was worsenning) and touch wood things have settled down. I didn't really want more tablets bit 6 gaviscon an hour isn't good and will raise sodium levels. Take care x
capelmum52
Member

Re: November 2016 Starters

Hi Fiddlercrab,
I see your dilemma now with Chrismas now. 8 is very much on the cusp of that age when they no longer believe. When mine were small we took the to Lapland and my daughter would have been about 8 or 9 and just starting to wobble about the existence of Santa, but came back as a true believe for a few more years, so maybe one for you for next year ? If missing out on your holiday you could try skype to family and friend as a bit more really for little ones as they can actually see each other. We have done this with lap top plug in to TV screen before so that we could join in the conversation together, that way the kids can still open their presents together.
This is all much easier for me as mine are grown ups 19 and 24.
Might be worth googling virtual Lapland trips and tracking Santa online as well. Either way I am sure you will make it special for him even if not what you had originally planned.

Good luck x
capelmum52
Member

Re: November 2016 Starters

Hey Jojo and the the of the November ladies,
Welcome to my cycle !
Yep 21st December not best timing. I have convinced my husband to go a bit continental with Christmas. I finish work in the 20th and daughter home from London on the 23rd so doing xmas dinner that evening and some of the presents and they will have to do all of the cooking ! Many European countries do it on Christmas Eve but I am not sure I will make it that far before the worst of it kicks in again.
I must admit I am normally the party pooper who doesn't want the decorations up but I am like you this year and cannot wait !! Son back from uni on the 3rd so will get him to put them up then. Like you also lost the pubic hair yesterday but the rest is still firmly there, I am hoping that the cold capping work but not actually that worried about that either now, got wig appointment on Monday just in case.
I am back at work full time this week and so far all ok. Trying to create an infection free zone is a bit of a challenge in a town centre open plan estate agency office ( I am a mortgage broker not an EA ) is proving challenging !! Moving to a much smaller office this morning, closer to home with a little separate office at the back just for me In Order to have damage limitation.
Worst of the current symptoms is now bad heartburn nearly all day, gaviscon is barely touching it, and diarrhoea, any one got any got remedies for either of these ??
Welcome to snail888, your diagnosis and treatment look very similar to mine X
Love to you all and take care X
Snail888
Member

Re: November 2016 Starters

Hi ill eventually work out how to post to November starters! First Fec 14th November and went for cold capping. Didn't find it too bad apart from meaning i have to stay in the hospital for so long. Totally different chemo to my dad's for prostate firstly because it was done as iv not a drip and secondly the volume. So I'm 8 days on and now terrified of catching something nasty. I'm on gcsf jabs for immune system as I have a weird liver and hammering antibiotics into me may not have been a good idea.
Side effects have been dizzy and muggy head until 4 days after although the dizzy feeling does return and the worst indegestion. That seemed to stop 2 days after the dexamethasone and with laprozole.
I invested in sleep caps from anna bandana at a couple of quid and some silky pillow cases just to stop my hair rubbing to try and keep some of it but we will see. Worst case I'll shave it and have sone xmas designs on my head for a few days!
My best chemo purchase has been a chillow from not another bunch of flowers. Perfect for hot flushes and cools the cheeks.
I'm signed as fit to work (I'm a teacher) provided I don't have to go in and mingle with the kids! In reality it means I've been doing a lot of video lessons for the sixth form and marking exam papers which keeps me at my part time hours each week.
Keep up the posts xx
Dx ductal carcinoma lumpectomy with reduction 3.6cm grade 3 no nodes. 6 x fec and radio
Sarah73
Member

Re: November 2016 Starters

I got myself some chemo sleep caps from amazon. So soft and comfortable and keep head warm. Lots of colours too..

https://www.amazon.co.uk/gp/aw/d/B00NQ0J8N6/ref=mp_s_a_1_1?ie=UTF8&qid=1479767441&sr=8-1&pi=SY200_QL...

I wear mine round the house xx
fiddlercrab
Member

Re: November 2016 Starters

Hi all. Got the appointment letter for the CT scan through today - it's on Thursday. I was expecting to be told the date at my oncologist appointment tomorrow, so now my mind is working overtime and the nerves have stepped up a notch. 

Djroo
Member

Re: November 2016 Starters

Had my first EC chemo on 4th Nov. My hair started to fall out on day 13. Decided to have it all shaved off today and had my wig trimmed ready to wear. My head feels quite strange and its really cold. Think I'll be going to bed in my woolly hat 

JoJo45
Member

Re: November 2016 Starters

Morning ladies and welcome Fiddlercrab,

Just been catching up on all of you.  Been feeling 'normal' over the last few days, seemed to have more energy than the OH 😀, so feeling a fraud that my GP signed me off work for all my chemo 🙁 but I have to stay away from patients.  Managed a Christmas shopping trip with my boy with a nice lunch out, like our QT time together.  

Hi Fiddlercrab,  make a list of all your questions for the consultant, I always forgot all mine when sat in front of them.  Hope they make things clearer for you.  Hugs to you.  

Sarah, hope you feel better again soon.  I think the weight thing might be something for all of us.  I didn't eat or sleep much from the diagnosis to the op, then post op due to sickness, so lost a bit.  But since chemo I've not stopped and I have a craving for pastry so have put all the weight back on 😳.  The steroids can make you a bit puffy.  

Fiona, it looks like we will be chemo buddy's as mine are moving to Wednesdays so my Christmas one is also due on the 21st, I want to put up the decs now so that we can do it early but OH says it's far too early.  Just want to do stuff whilst I feel well.  

The hair is slowly on the move, I shaved my legs last week and it's not come back, pubic hair fell off in shower on Saturday, which I seemed to find hilarious 😂😂, guess it's working upwards.  Then head hair had a little shred yesterday, so got my friend to cut it shorter.  Going to get the wig sorted this week.  

Lots of love and hugs 🤗 🤗🤗 to all 

jacksprat2708
Member

Re: November 2016 Starters

Morning all.

 

PICC Line fitted on Friday which went ok. No real discomfort but at times over the weekend felt like I've had indigestion ! Collecting my waterproof cover from pharmacy today which will make showering easier !

 

1st Chemo is on Thursday !!! Bit worried as have woken this morning with one hell of a cold😷 so trying my hardest to get shut of it before then ! Don't want Chemo delayed just want to get started now !!

 

Am going to give cold capping a try... all this really is a whole new world isn't it !!!

 

Love to u all & hope you all have a good day x

 

 

fiddlercrab
Member

Re: November 2016 Starters

Hi Fiona

 

The waiting has definitely been awful so far, especially the extra hour in the waiting room at the breast clinic to get the diagnosis because they were running an hour late! And now more waiting to get dates for treatment. I really wish they could just start, but dreading the possibility that they find something else in the CT scan.

 

I am seeing the oncologist on Tuesday, and the BCN have said that I will get appointment dates for the pre-assessment (MRI and CT and ?other things) and first chemo then. Hopefully I will also know more about which drugs and why too. I like to have all the information! 

 

The small person is 8, he has taken it all really well so far after an initial wobble and now finds the idea of a bald mum very funny. (Edited - Xmas worry comes from the fact that we had a week away planned which might now be cancelled, leaving him without his grandparents/aunties/cousins and with a sick mum on Xmas day - but we will make something work)

 

Thanks for all the support

capelmum52
Member

Re: November 2016 Starters

Hi Fiddlercrab,
Good to have you with us.
I can understand your anxiety about the results, I think I was more stressed when waiting for the results than at any point in the journey so far. The good news is that what ever the results are you are already booked in to get the chemo underway which will deal with it and kick that cancer's butt for you. Do you have an appointment to see the oncologist ? With mine they held on to the results and did not give them to me until my appointment, presumably so that I did not jump to any conclusions and panic with out understanding the options available to me.
As for Christmas the advice to celebrate it a bit earlier or later is sound advice. This will be the case for us as chemo 3 will be in the 21st December so will definitely not be cooking or eating Christmas dinner.
How old is your little one?
I have everything crossed for you that the results are ok and know that we are all hear for you either way as these lovely ladies have been for me.
Take care and stay strong.
Love Fiona x
capelmum52
Member

Re: November 2016 Starters

Hi Sarah,

Lots of questions but here goes.
Yes had my lumpectomy 5 weeks ago and difficult to tell as was healing and now swollen again but it looks like there will be a small hollow where the scar is. I think about the size and shape of a dessert spoon is flattened against my boob. Hope that makes sense. The tumour removed as 2.1cm. I do have quite large boobs 40c but where the scar is with all of my bras there is no visible sign of the dent. I think it depends more on the part of the breast it was taken out of.

Weight ? Just the opposite I lost about 6 pounds in the first 8 days and gain a little back since. But to be honest I am overweight and need to lose 2 to 3 stone so quite pleased😀. Are you having steroids with you chemo ? That might be the reason why.

Puffy face ? No not had that one either.

Fantastic news about it not being a hereditary cancer, that must be a great relief for you.

Take care of yourself over the next few days, at least this time around you know it won't last too long and they in a few days you will start to feel better again. In the meantime you know where to find us all if you need cheering up ! 😀😊😀😊😇
Love Fiona x
fiddlercrab
Member

Re: November 2016 Starters

Thanks pernapus, hoping that the bad hangover is the worst of it and I can just mope around for a few days, but it hits everyone differently, doesn't it. Just wanting to get started really! My Christmas worry is more for my son - it might be the last year he believes in the Big Man and I want it to be fun for him.

 

Are there any key things I should ask the oncologist on Tuesday? All I know is that it's invasive ductal and quite large and straggly, so they are hoping to shrink in before surgery. I guess I also want to know whether the lymph node was clear or not (the results weren't back even though it was 2 weeks after the biopsy) and the ER and HER2 status if they can get than info from the biopsy. 

 

Scared myself reading the 'reconstruction' booklet they gave me!

Kelly
Member

Re: November 2016 Starters

Hi I'm day 2 of 2nd round and just lying in bed at the mo. Feeling a bit crap, but I tend to find as the days goes on I feel a bit better.

Sarah - I've put on tonnes of weight since diagnosis at least a stone. I'm a big stress eater and I'm normally at the gym 4 times a week - but that's all gone down the toilet and I've suspended my membership for a few months!

As to your lumpectomy, I would say that hopefully once your chemo has finished your lump will have shrunk small enough for them to remove it and for it not to disrupt the shape of the breast too much. I'm a 36D (so farely big), and although my lump was 26mm he removed 7cm and I'm surprised that it has hardly distorted my boob at all.

I haven't had a swollen face, but my hands have swollen - so I've had to take my rings off.

Not looking forward to the next few days and although cold capping I've noticed my hair is coming out today 😥.

I hate this xxxx
pernapus
Member

Re: November 2016 Starters

Sarah73 glad to hear this round isnt too bad, feeling the same here and hopefully i wont get a chest infection this time round (we're on biohazard lockdown here (well except for the two permanently snotty kids 😂)). They're going to wait til round three to put my clips in (but i will be having double mastectomy so not as important to denote the boundaries). Also gutted to be putting weight on, i though that losing weight might be a positive chemo side effect! Hope to see you on 7th (i think im at clinic in the am)?

Fiddlercrab, welcome to the forum, it is very daunting to start and everyone reacts differently. But hopefully you can discuss start times for treatment and several of us have found that we only feel really rough for a few days (like a really bad hangover). So try not to worry about Christmas, you could always celebrate on a different day 😄 once you know when you are having it. Hope that helps x
fiddlercrab
Member

Re: November 2016 Starters

Hello everyone

I was diagnosed last week and they've recommended neo-adjuvant chemo, starting "sometime in the next couple of weeks". I've got my first appointment with the oncologist on Tuesday and find out then whether I will be a November starter or it will sneak into December. My biggvest worry at the moment is feeling sh*tty over Christmas 😞

 

Sarah73
Member

Re: November 2016 Starters

Mornin everyone. Well its day 3 and feel ok at mo other than bit breathless when doing things. I cant believe how all similar we sound. i was so tired straight away after 2nd round. i did pick up next morning though. Has anyone else gained weight ?  Mine is creeping up. Put on half a stone in 3 weeks!

 

Seagul, a friend of mine has extremely curly hair (afro) and it has come back exactly the same! Just taking a bit longer to grow as sooo curly.

 

Great to hear your news permapus. I too had the good news about the BRCA gene. Had to go and have clip put inside my lump as a marker on Friday morning before chemo as it seems to be shrinking. It was 3cm in breast and 2cm in node, but both feel smaller.

 

Does anyone else haxe a swollen face after their steroid pre chemo. Yesterday and today its really puffy.

 

Another question sorry...for those that had lumpectomy, i have to have this after 6months of chemo. I only have smallish breasts, will my breast look odd shape? Feel quite selfish asking this as i know some of you will have to have or may already had a mastectomy. So i apologise for my question. But its something ive been thinking about.

 

Hope you all are on the up soon after your 2nd round. Knowing its day 4 tomorroe, i may not be on for few days if anything like last round.

 

Hugs to everyone.  xxx

Snail888
Member

Re: November 2016 Starters

Oooh I had the sat on the hedgehog sensation thought it was the fec burning it's was through. How odd!
Snail888
Member

Re: November 2016 Starters

My second due 21st too gingers cross x
jacksprat2708
Member

Re: November 2016 Starters

Hi Capelmum52
I had lumpectomy and lymph nodes removed in Oct . I too have cording in armpit down to elbow and mine is also blinking sore! I've just tried really hard to continue exercises in between lots of expletives !😳( tried massaging but TBH hate the feel of it ! Something I'll have to get over !)
I had my PICC Line fitted yesterday and it went ok not too much discomfort . Feels strange that this is going to be here for the next 18 weeks ! My Chemo starts on Thursday... apprehensive, scared, nervous but kinda just want to get it started now.
Feel like this forum may be a lifeline in future months x