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Anyone starting Chemo in December 2018?

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

Tip:

You can always get your wig trimmed/styled. My friend was is a hairdresser and did this for me.

Wig washing: Gently wash the wig with shampoo e.g. Simple. Rinse, use non-bio clothes conditioner to condition wig and of course rinse. 

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

 think this Hi,

I was a contractor at the time and my contract ended just before chemo began.

My surgeon advised me not to work and this was good advice,

Financially this was a nightmare as I had no income. 

Looking back I could probably have worked through cycle 1 & 2 BUT it is accumulative and you will feel much worse with each cycle.

Also, there will be a period in each cycle when you have little or no immune system so you need to keep away from those you don't normally come into contact with, infections and be careful if you have an accident.

I went for a cycle and ripped off my toenail. Had to call the hospital and was advised to get to A&E urgently. Tests showed no immune system so they injected me with something that cost £1000.00. They were going to quarantine me but sent me home providing I stayed there. - BEWARE.

 

My advice - don't work.    

Trixielady
Member

Re: Anyone starting Chemo in December 2018?

Jayne1966 , pleased to hear you're feeling better for now , yeah I'm feeling positive too but it's the waiting to speak with my oncologist about the full picture coz I don't think I took it all in and my surgeon kept saying one thing at a time let's get surgery over first , now I feel as though the fight is really about to start xx
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Hey Trixielady, I have HER2+ also (and oestrogen+) but I'm having the surgery at the end. I think its one of the most treatable with Chemo with good prognosis. I've only had one Chemo session so far and felt really unwell for a week afterwards, but feel absolutely fine now and ready to go again for the second dose on 7th Jan. Cancer is not going to get the better of me and neither is the Chemo. Stay strong and plan somethings to look forwards to in week 3 of your cycles x
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Trixielady.

 

The waiting around is horrendous I agree. I have a grade 2 invasive type. Oestrogen and Progesterone positive. I had a left mastectomy on the 26th October with lymph node clearance. 17 out of 26 nodes affected. My tumour was larger than they first thought. The Oncologist said something to me the other week which made me feel as if I had brought this upon myself. Quite distressing but I’ve got over it now. I’ve had 2 cycles of EC now. 2 more to go then 4 cycles of Taxol to be followed by 4 weeks Radiotherapy. Some days I feel like walking away from it all. However, I have 2 small dogs, friends and family to live for. On the Predict website it gave me good survival percentages if I had the chemo. I don’t look at survival figures normally but it did help me decide about further treatment. 

 

It is difficult and the decision is ultimately yours. We all react differently but I’m hoping mine is going to fit into a pattern lol! I think we all get very anxious about chemo. I’m a widow and on my own at home. I do suffer with anxiety about it all. You will be okay. We’re all here to support one another and you WILL be okay. I also speak to a ‘Someone like me’ volunteer. Sending hugs xxx

 

 

Trixielady
Member

Re: Anyone starting Chemo in December 2018?

Evening Drummerseidow , I feel strange reading all the posts but I'm waiting to be booked in for chemo ASAP , I've already had my lovely long hair cut short I thought it would help , my mind is playing havoc , now I'm not sure if I even want chemo because of what I've been reading , it's so difficult the time spent waiting , had mastectomy 13 November , 1 lymph node cancerous out of 2 removed then had lymph node clearance on 13 December all clear , think they've said stage 2 HER 2+ . How are you ? and how much chemo have you had so far xx
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Mine was the same. When I got to the hairdressers I’m sorry to say it all had to come off. Don’t mean to upset you but just for you to be prepared. Xx

Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

I had my first FEC chemo on the 17th and have had an itchy scalp for about 4 days. Yesterday evening I was running my fingers through my hair and it was coming out in handfulls. Luckily I have thick hair and you can not tell yet. I am hoping to get past 31st before cutting it really short. My head is very tender in places now though.
reddi
Member

Re: Anyone starting Chemo in December 2018?

Same for me!
Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

Thank you Reddi, i wish i was constipated, i have no problem with going 😂 it's the hugeness off my bm's! 😂 😂

Think they have mutated and tripled in size!
reddi
Member

Re: Anyone starting Chemo in December 2018?

@Fluffysunshinepants (nice name, esp given the givens! 😉) I got the same problem around cycle 4 -- from the steroids plus antibiotics, I think -- and was advised to see my GP. She examined and then prescribed cream, suppository, and lactulose, the last of which is a syrup that helps soften things up and allows more opportunity for healing.

Because everything was on prescription, it was also free. If you haven't already received your NHS medical exemption prescription card yet, do ask your breast care nurse or GP for the form.

Good luck! 🌷
Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

Definitely from the piles, stopped straight away once i had wiped but now have that itchy, sore feeling, oh the joys. Will try to get hubby to pick me up some more cream, although our local boots will not advise anything once they know i am on chemo, it's a wonder they make any profit 😂

I agree, i was just explaining to my hubby that i have a headache but don't want to take a tablet in case i miss a high temperature! You could drive yourself potty

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Morning Fluffysunshinepants. Are you bleeding from the piles do you think and how much? It might be worth getting it checked out for peace of mind. 

 

Trouble is, referring to myself, things I would probably not worry about normally, I now find I’m super anxious about. Stupid I know but I can’t help it. 

Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

Morning all, TMI but here goes, when i was on the two week wait i was given antibiotics which played havoc with my digestion resulting in a pile being agrevated. I have had no trouble going to the bathroom at all but today passed blood. Bleeding all stopped but not sure if i should get checked out.

With it being the first round i'm not sure what is considered normal or when to call for advice
Shi
Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Beautiful ladies😘😘I had my long hair cut into a bob prior to starting chemo and sent it to little princess trust wigs for kids, for me it was a right chemo you will take my hair but I decide what happens to it and I choose to help a child with it, so you might be able to turn it into a positive ❤️❤️After than when my hair started shedding (day 14 for me) I was in hospital, so the minute I got home after my casa nhs stunt I got flipped out and grade oned it, got my make up on and buzzed it off, gave me control of it and also in privacy of own home and not in hospital which was why I buzzed it off, I thought i’ll Get it off now in my home, my choice just in case I ended up back in casa nhs. Other girls had friends and family raise funds for cancer research as a brave the shave again turning it into a positive, it’s a big hurdle and a very personal one, always remember you are beautiful strong amazing and you are still YOU ❤️❤️❤️😘😘💕💕Shi xx
angelblue
Member

Re: Anyone starting Chemo in December 2018?

Thanks for the info and advice re the injections, Shi, pastamissus and drummerswidow. It doesn't sound so scary now. After your input I'm feeling all She-ra at the moment and think I'll opt to do them myself if its going to be awkward to get district nurse round!! 

 

I'll check out that wig site as well Shi. I do have a wig through MacMillan, which I really like, but like you I wanted a couple so I could have a change. 

 

ajorchid and catlady37 ...I think a lot of us are at that stage where we've got the hurdle of the first chemo done and now we're waiting for the hairloss.  My heads been tingling the last few days and then today strands have started coming out. Its horrible and despite the fact that I know its going to happen I'm gutted!

 

I'm sorry to hear about your abcess Ajorchid. I hope the antibiotics clear it up. Thats me, you and marycamille, as far as I know, who have had their second chemo postponed. Its disheartening. I've now added 4 weeks to my proposed finish date, just so if I do finish sooner than that it'll feel like a bonus! 

 

Take care all xxx

Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Hi Ajorchid
I just wanted to say I'm sending you a virtual hug 🤗
I'm sorry to hear your chemo was put bk because of an abscess as if things aren't hard enough you have to deal with that too but sounds like they are on top of it and the 3rd will soon be here
And the hair well I'm thinking the same as you I'm stressing and thinking about it every day I'm hoping it will be a relief when it's done but I suspect there will be alot of tears on my behalf
On the positive side no more bad hair days 😄
AJOrchid
Member

Re: Anyone starting Chemo in December 2018?

Just stopping by to say "hi" I haven't posted much but I do read what's going on and send positive thoughts to everyone here.

 

I couldn't have mt second round of chemo on the 27th because I've been on antibiotics for an abscess (right next to my breast tumour). Hopefully, my next scheduled appointment for the 3rd of January will go ahead as planned. 

 

I'm also at the waiting for my hair to fall out stage. In a way, I think it will be a relief now when it happens Smiley Sad  

Shi
Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Jabs, I was told to do them opposite sides of bellybutton each day about 5cms from belly button, ask one of your nurses they will happily show you how to do. I was needle phobic too last year but 6 days in casa nhs after first one put that out the window, I grabbed a bit of belly fat and had it in there in seconds, voila 👍as soon as you do your first you’ll be off and 🏃‍♀️ 👍👍Trendco are great for wigs there are also your Macmillan centres who have preloaded wigs too and don’t forget your vouchers you are entitled to again speak to Macmillan. I had a few wigs from luvyababes too, they have a great range in now, not at all wiggy and I was happier in a £20 one from their than the very expensive real hair one my darling hubby got me. I had a wig for treatments and then another one that was nothing to do with treatments, so had a bit of separation to things if that makes sense? Also had some fun ones too, coloured ones and tinsel ones 🤪🤪well why not. Silk pillowcase is gentler on head after hair loss and I had scalp care kit from beauty despite cancer which cared for scalp well. Re dentist, you should be seen straight away and get treatment straight away when you tell them you are going through chemo, I think that’s how it should work regarding oral hygiene during chemo, do they know you are on chemo? 💕💕Shi xx
pastasmissus
Member

Re: Anyone starting Chemo in December 2018?

the injections are small  thin needle, you do them into the fat in your tummy. If you're brave and go for it, they really don't hurt (and they don't hurt more when you press the plunger, which most injections do). If you're a bit more tentative then you feel the needle going in more, but it's still much less painful than getting blood taken. Also, the skin over your tummy isn't very sensitive, so you really don't feel much there anyway.

angelblue
Member

Re: Anyone starting Chemo in December 2018?

Hi drummerswidow

 

thanks for putting my mind to rest re the injections. I think this whole expereince is going to make us all braver! Its at least a week away yet so I'm just going to focus on making this next week nice ...and also as productive as possible as I'll be waiting around for my next chemo! I hope alls well with you xxx

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Angelblue.  The needles aren’t very big at all. I did my injections in the morning at first so I would remember to do them. The chemo nurse advised I did them in the evening as I was having pain. See if it works! 

angelblue
Member

Re: Anyone starting Chemo in December 2018?

Hi all

 

marykamille - I'm so sorry to hear that its not going well dental wise. Usually dentists have appointments set aside for emergencies. Surely he could use one of these, as you would think that having chemo delayed is an emergency. Whilst I was at the dentist pre-chemo I heard the receptionist telling someone on the phone that the next available appointment was a couple of weeks wait but if they phoned and said they were experiencing pain they would get seen straightaway??? I hope you're not feeling too downhearted but I know its hard to keep on picking yourself up. Mine is also delayed for at least a week but I think it could go up to 3 weeks from what I've read. Its so frustrating with moving targets all the time when we just want to get the chemo over with and move on!!

 

drummerswidow - thanks for info re injections. Oncologist warned about bone pain. Is that why its better to do it in the evening or just your personal perference? Are they full size hyperdermic needles or just like the epi-pen? I think I may be able to manage an epi-pen type needle but not a big proper one! xxx

maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Hello everyone

 

Have not been in here for a while but catching up on everyone's experiences. We're a brave lot, aren't we? Good wishes to all of you for New Year and hope you can celebrate a little. Hope you all managed to enjoy some part of Christmas.

My major bugbear at the moment is dental problems. I saw dentist & hygienist before I started Chemo in December and used hospital mouthwash 4 times a day as precaution, but developed an infection almost overnight - it was the day I saw my oncologist in preparation for my next cycle on New Year's Eve and little did I know that later on it was going to be downhill.

I managed to get an emergency appointment at the dentist on Christmas Eve and antibiotics. However, I need an extraction. I only ever had one before and that was decades ago!

This means my 2nd cycle is delayed. A lot.  Dentist can only do extraction on 9th January earliest. Then I need a full week before I can see the oncologist again because he needs to be sure I have a healed wound and no further infection before I can begin my next cycle.

I never thought I would have this disruption but maybe it's better earlier than later (I have 6 sessions in all) as I will be weaker as time & cycles go by.

No nausea or vomiting with 1st cycle - that's a plus. Only hope this doesn't mean an endless problem with teeth! Hasten to reassure me someone!

pastasmissus
Member

Re: Anyone starting Chemo in December 2018?

Am now day 11 post FEC (first cycle). So far I've only had the overwhelming tiredness and zero brain day 4/5 - seriously, not enough brain to be bored or listen to the radio! Listened to talking books on my ipod whih I practically know off by heart I've heard them so much. Anyway, brain now back and able to read decent books again 🙂

Last night very sore hips and sternum (breastbone), presume this is a side-effect of GCSF (had this for 7 days, no problems until last night).

Apart from that I've been amazed by how few side effects I've had. Oh, extremely bizarre vivid dreams days 3 and 4 thanks to steroids!

Have got a multi-coloured 80s Mullet wig for when the hair falls out as well as the sensible one and loads of hats and headscarves.

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Glad you’re doing okay Fluffysunshinepants. I’m on my second EC and am feeling very tired. Could be the Christmas effect as well though xx
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Angelblue. I’m sorry your chemo has been postponed due to your low blood count. I inject with G-CSF on day 5 for five days each cycle. I’m lucky because I used to be a nurse so have no fear of needles. I do the injections in the evening but find I do get some pain in my hips but that’s a side effect of the drug. Hips and sternum are where we have a load of bone marrow to make the cells. 

 

It is confusing when the oncologists use use different ways of describing the cancer. I have an invasive cancer which is common, but then a micropapillary cancer which is not. In the end I know I need treatment so have not pressed more about the finite details but it is good to know. We need to get our heads around what’s happening. Hope your blood count picks itself up xxx

angelblue
Member

Re: Anyone starting Chemo in December 2018?

Hi all

 

Hope everyone is doing ok. Bad news for me yesterday. My white blood count too low so my 2nd chemo been postponed for at least a week. Also I will have to have the 5 lots of G-CSF injections after all susequent chemos. I know some of you are also having these injections. How are you doing on them? Do you do them yourself or does district nurse/someone else do them? I'm very needle phobic so don't think doing them myself will be something I could consider. I'm hoping I'm given the option of someone medical doing them!

 

Kc72   - thats really kind of you to share information about hair loss. I know it's imminent for a lot of us and the waiting and dreading it is the hard part. It must have been a traumatic experience to lose your hair so young. Its amazing that you've found such realistic wigs that your work colleagues don't even realise. Maybe you could tell them you're using the cold cap and you've managed to keep all your hair??  I looked on the Trendco site after you mentioned it. A lot of the wigs do look realistic and not 'wiggy'! Do you go for real hair or synthetic? 

 

Rapunzel 2018   - my oncotype score was 31 which is the start of high risk, although my oncologist keeps referring to it as 'high intermediate'. Its confusing as it does look like 31 is high intermediate on the graph on my oncotype report but I've checked with Oncotype themselves and they confirmed it is high risk. I need to be brave and tell oncologist its high risk not high intermediate but it feels hard to disagree and I bottled out of it yesterday! Although it wouldn't make any difference to my chemo as he confirmed that due to my peripheral neuropathy I wouldn't be offered Taxanes. Its so random ..and annoying... in my 30's I got a  rare illness (Guillain Barre Syndrome) which left me with peripheral neuropathy and now 15 years later its impacting on the treament I can have for breast cancer. Oh well...C'est la vie!! I'm doing all I can do diet and healthwise to give myself the best outcomes.  Let me know what your oncologist says about your chemo regime though..and whether or not she believes taxanes would improve outcome. I really hope that  IVF is successful for you. It must have been so stressful to have it after your diagnosis. But its good that you know that having children isn't out of the question once this is all over.

 

xxx

Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

Hi all, had my first FEC on Christmas eve, surprised to find no side effects other than pain from nightly injections and tiredness, as i had imagined all manner of ailments, although strong smells can make me gag a little.

Hope alls well with everyone else
Sunnydaze
Member

Re: Anyone starting Chemo in December 2018?

Hello ladies,
Especially a big thank you to Rhubarb (there’s some great imaginaonames on here 😊) for sharing your post of your experiences. I am having FEC-T too and had my first infusion today. I have copied your post for my Mum and sister, to give them a bit of an idea of what to expect, so thank you. Much appreciated 😊
Thank you also to Gocat and Wahini for sharing your experiences, it’s kind of comforting to read other similar experiences. Stay strong ladies💪 and I know we are good at finding the positive in everyday, even when things are tough. I had my first dose today
I hope you are well I’m sending you love
My protesting finally paid off and chemo has started.
I’m back home now, it went alright. I was quite chipper, better than I was yesterday. The Chemo nurses were lovely. They have given me a few lovely new scarves and showed me how to tie them.😊 I have been given very strong and double dose anti sickness tablets. Let’s hope they keep nausea at bay. I feel ok, slightly pissed actually! I think it might be steroids. Fingers crossed that I don’t feel too bad and have an ok night.
Love and light
I had a bit of a wobble yesterday trying on unsuitable wigs, that looked terrible, but with a bit more time will get there. Think I’ll go for a blonde bob style, but I’m very tempted by a silver long one with purple tips. Ha ha, only joking, but it might cheer me up some sad days.
Love, light and healing to all you strong ladies xxx
Wahini
Member

Re: Anyone starting Chemo in December 2018?

Hi Rhubarb, thanks for your info, I will be going through the same cycles. Did you manage to work at all during your chemo, like during your better weeks, or did you take the whole time off?

Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Thank you Rhubarb for sharing your experiences I find it really helpful to know as much as I can so I'm prepared for what's to come 

Also it's nice to know your back to normal and your hair is healthy again that helps me stay positive ☺️

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Rhubarb.

 

Very helpful thank you. Tell me about the constipation!! LOL. This is after 2 cycles. I’m making a note of symptoms etc. to help through my cycles of treatment. 

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

Hi ladies,

 

Having been through 6 cycles of FEC-T and now back to normal I thought I would give you a few pointers. 

 

  1. Cycles meant 3 cycles of FEC and 3 of T. These are abbreviations for the drug regime and names.
  2. Decide if you are going to wear a scarf, hat, wig ASAP and purchase.
  3. Hair drops out after about 2 weeks. Starts as if you are moulting. Then comes out by the handful.
  4. I used to feel fine for about 36-48hrs post dose and then rotten for about a week.  The week after was ok and by the third week I felt fine but then got another dose,
  5. The treatment is accumulative so by cycle 5/6 you will feel very rough. I stayed in bed for a week. Doctor gave me something to knock me out.
  6. See 1, Hair drops out with FEC. Eyelashes and eyebrows with T - cycle 4 onwards. 
  7. Learn to draw on eyebrows. Works a treat, False lashes, did not bother.
  8. Don't use baby shampoo. Simple range works well. Continued to use Simple products for a year.
  9. You may become allergic to things you were not allergic to previously. so don't colour your hair for at least 6mths.
  10. When your head starts to itch and you need to scratch it this it means the follicles are growing hair again. This started when I was on 'T' in cycle 5/6. 
  11. I stopped wearing a wig after 6mths. Had hair styled to a short pixie cut
  12. Hair grew back with tight curls, white and multicoloured like a tabby cat. It was blonde?  So after 6 mths I used a natural colour with no additives Naturalle in a green box from Holland and Barrett.
  13. As my hair grew longer it was thicker and with a wave - just as it was as a child. Very happy as it was fine and dead straight before.
  14. Side effects. Ensure you know them all. There is a huge range from thrush, to metallic taste to upset tums ...Mine varied by each cycle. Seemed to have 3/4 per cycle but strangely never the same 3/4.
  15. Use a dedicated mouthwash wash and soft toothbrush - teeth and gums will suffer. See your dentist regularly. See oncologist / GP /pharmacist to recommend a mouthwash.
  16. Eat plenty and a balanced diet. Drink plenty of fluid.
  17. My friend suffered from diarrhoea whilst I had constipation. She wore pads whilst I used Vaseline. Sorry to mention ladies but if you get really awful constipation, smear some vaseline around and just inside your anus. This aids the evacuation and reduces pain.   
  18. Nails became discoloured brown and split. Look after your hands and nails. They will return to normal.
  19. I have nerve damage to some of my toes as a result of chemo. Some feel a bit numb as it I've come in from the snow. This is permanent but a small price to pay. 

 

  Hope this helps some of you, 

 

 

 

Wahini
Member

Re: Anyone starting Chemo in December 2018?

Thanks Drummerswidow, I look forward to my party. I do not have scarves, I have seen the videos but I don't think they suit my style. I do have a buff (kind of tube of t-shirt material), NHS wig, and beanies and hats.

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Wahini. Have you got a scarves? There’s some YouTube videos which are good about scarf tying. Enjoy your party x

Wahini
Member

Re: Anyone starting Chemo in December 2018?

After 2 weeks and 2 days since my first chemo, my hair has started to fall out. I hope I have enough left after I wash my hair today because I am going to a party this evening. My hair has been looking real good, not lanky and greasy at all as I have read happened to others on this forum but quite shiny and full. Anyway, I bought a hair clipper in Lidl yesterday for when it gets patchy. I did not try the cold cap.

gocat
Member

Re: Anyone starting Chemo in December 2018?

Morning all . Had my first FEC yesterday morning.  All seemed to go well.  Tried the cold cap which I found horrendously uncomfortable for the first 15 minutes and it also leaked at the back so had a cold back despite having towels. Will take change of top next time.  Was ok the rest of the time.  

Got home about 5ish, had evening meds but still got very nauseous.  Went to bed early and fell asleep but awoke in the night still feeling very sick.  I found drinking plenty of water helped.  

Got up this morning, felt a bit sick.  Had morning meds of Emend ( I see someone above has said it is a good one). And 4 steroid tablets so hopeing today will not get so much nausea. 

One of the drugs made my wee a bit red.  I was told it would be back to normal by next day but its still a bit red.  I feel Im drinking plenty of water, so hopefully that will subside today too . 

 

xx 

Catlady37
Member

Re: Anyone starting Chemo in December 2018?

Hi Nellie

 

I just read your post and I can totally relate to how your feeling at the moment I've had my up and down days since I started my first chemo on 21st 

It definitely helps me when I read someone else is feeling the same way as me 

I felt sick the first day but I've been pretty lucky I've not felt too bad just tired and ache and I have more of a appetite then normal so making the most of it 

As for the hair loss that's the part that is actually making me stress at the moment as I just keep thinking how I'm actually going to cope seeing myself with no hair and seeing my hair fall out! In a way once it's done and gone it's one less thing for me to stress over  or so i keep telling myself! My  hair is greasy and lank too which I've never had before. Im still waiting for my wig to be ready for me to pick up and I hope and pray it's ready before my hair falls out but I do have a head wrap for home 

And I definitely think hanging onto the more positive days will help get us through. I'm finding just the smallest things that put a smile on my face at the moment are more valuable then I ever noticed before like still being able to laugh at something silly, a hug from my partner or just my cat sat purring on my lap it's these little things that I know will get me through my down days 

Much love xx

Nellie McNelly
Member

Re: Anyone starting Chemo in December 2018?

Hi all - just wanted to "pop in" - it's difficult to keep up with where everyone is in their treatment cycles but reading through the posts just goes to show how different people's experiences are.  I have been pretty up and down emotionally since my first FEC on 20 Dec.  Physically I have been really nauseous but that (hopefully) seems to have passed and I am eating OKish now.  I've had a horrible patchy tongue (nice) but was provided with some drugs for that and that seems to be getting better.  

 

I haven't cold capped so am waiting for my hair to fall out - even typing that feels surreal.  I'm on day 8 and no sign of any loss yet but my hair is SO lank and feels really greasy.  I've got a wig and scarves and things ready - but I think I'm going to struggle with the reality of dealing with them everyday rather than just trying them on.

 

However - today and yesterday have felt more "do-able" so I am trying to hang on to the more positive days.

 

I'm not really a massive social media fan but it does help to know that there are other people going through this.

 

Big love

 

Sunnydaze
Member

Re: Anyone starting Chemo in December 2018?

Ah thanks Drummerswidow and pastamossus for your kind and helpful comments. It means a lot, not to be going through this on your own. I’ll let you know how I get on. Love and Healing to each and everyone of you.xxx
kc72
Member

Re: Anyone starting Chemo in December 2018?

Hello Ladies

For those tackling side effects am sorry to hear you’re suffering. Angelblue glad to hear your bleeding is subsiding - whole experience sounds upsetting and every best wish for your adoption journey when the time comes.

Rapunzel - I had Emend for my first chemo and didn’t suffer any nausea. I might have just been lucky. Good luck with IVF in future - what a rollercoaster for you.

Hope you’ve managed some Christmas cheer with your families with more smiles than tears.

AJOrchid hope today was ok for you and that sunnydaze you get on ok tomorrow. I’ve had a port fitted today so feeling bit tired after local anaesthetic/sedation - just home, and taking it easy with a cuppa and slice of chocolate Yule log 😄 - the perfect prescription to recover ASAP.

I feel for those beginning to lose your hair - stay strong. I know how upsetting and de-feminising the experience is. I lost all my hair when I was 21 and it never grew back. Having worn a wig for 25 years, be assured there’s lots of fabulous wigs and products out there to help you. I know ‘’it’s just hair” but it’s a massive part of our identity and how we look and feel about ourselves. Be kind to yourself. Psychologically it’s tough but try and focus on the little things that make you personally feel better - wearing your nice clothes, putting on make up, getting a head massage, getting a nice hat to keep your head warm and toasty, buying a colourful scarf to make you feel brighter. For wigs I’ve been using Trendco in London for 25 yrs - they are fantastic. Also your eyebrows/eyelashes help frame your face. There’s lots of good products like pots of eyebrow wax(L’Oréal, Benefit) and eyeliners that’s will help give definition if you have no lashes left for mascara. My challenge is when my work colleagues ask why I’m not losing my hair - no one at work knows I wear a wig it’s so real!

Take care and Best wishes

KC72
ktk
Member

Re: Anyone starting Chemo in December 2018?

The metrochlopromide can be taken ‘as and when’ so is fine to take is you are 🤢. Kx
Rapunzel2018
Member

Re: Anyone starting Chemo in December 2018?

Thank you! I didn't get Akynzeo but had Metrochlopromide (plus stronger anti-sickness meds). I was told to take Metrochlopromide only for three days after the chemo but have some left over and have been wondering whether I could take one if needed. Will talk to the pharmacist about the anti-sickness meds before the next chemo.

Rapunzel2018
Member

Re: Anyone starting Chemo in December 2018?

Hi Angelblue,

 

Yes, IVF on top of (or in between) everything else was, let's say, an 'interesting' experience, but (after much soul searching) I chose to see it as something positive to do amidst all the other stuff.

 

My Onc recommended FEC as she considers the toxicity level of FEC-T as potentially too high in my case (I was recommended chemo primarily because of my Oncotype test results (25) and because I might want to interrupt HT after two years in order to try to get pregnant ).

 

However, I'm going to have another word with my oncologist about the regime because I've read (and been told by other oncologists) that T might be of additional benefit in cases like mine. She is happy to have the conversation - I've already got an appointment in January.

 

I'm also aware that there are significant differences when it comes to which chemo regimens are recommended both within the UK and beyond (for instance, guidelines between Germany and the UK differ, and treatment in Italy might be different from treatment in Denmark). Having said that, If you already have peripheral neuropathy, then T would be out of the question not only here but elsewhere also. 

 

In the end, I think it is important to weigh up risks and benefits, and quality of life. I'm still pondering about that question.

 

xxx

Rapunzel

Shi
Community Champion
Community Champion

Re: Anyone starting Chemo in December 2018?

Hi rapunzel, akynzeo and metrochlopromide worked very well for me during chemo, no sickness, no loss of taste buds, your team will try you on various meds till they find combination that works for you, also girls on my thread last year used sea bands on their wrists which helped them. Think the chemo regimes are tailored specifically for each individual as are the doses which I think is why everyone ends up on different plans, your onc will be happy to answer anything for you ❤️❤️💕💕Shi xx
angelblue
Member

Re: Anyone starting Chemo in December 2018?

Hi Rapunzel

 

Yes the bleeding has stopped thankfully, but thank you for your good wishes. It does get hard to keep up with where everyone is at, but its nice that its such a supportive group of women on here.

 

It must have been hard for you to be thrust into IVF on top of the breast cancer diagnosis. I looked into IVF in my late 30's/early 40's but decided to just let nature take its course and hoped for the best. It didn't work out for me kidswise but as it was my choice not to do IVF I was  ok with it. As luck would have it though I'd just booked onto a fostering/adoption information evening when I got my cancer diagnosis...so that option is now on hold! 

 

I believe you said you are doing 6 x FEC, which is the same as me. A question to you and all the other ladies just doing FEC. Do you know why you've been put onto just FEC as opposed to FEC-T? I know I'm just FEC due to already having some peripheral neuropathy, otherwise I believe I would have been FEC-T. I've been doing some research into chemo drugs so curious into reasons why other oncologists have gone for Fec over FEc-T.

 

love to you all xxxx

 

ps - my hair has started prickling...yikes!!!!

Rapunzel2018
Member

Re: Anyone starting Chemo in December 2018?

Dear Angelblue,

 

I'm so so so sorry to hear about your experience, and I really feel with you. I keep fingers crossed that today's blood tests will not show you're anaemic (although from what you're saying it rather sounds as if you might be). I was explicitly told to report any unusual bleeding (that lasts for more than five minutes) - and from what you describe your bleeding has definitely been most unusual. Is there anyone - your oncologist, a BCN - you could get in touch with about how this situation has (not) been handled? I understand the limits of protocol/tick-lists (they seem to be everywhere), but common sense is also needed, especially if someone clearly is in need of help.

 

I hope you won't have to deal with such a response from anyone in the team looking after you again. It's so hard to be in this situation, and it makes it much harder to muster the energy to be your own advocate as well. I remember thinking that I really wanted my bleeding/period to have finished before starting the first round of chemo (I had had an emergency IVF and expected a heavy period); nobody else seemed really concerned about that but I think they should listen to what we're telling them, too. We know our bodies best, after all.

 

Wishing you much strength (and good blood test results),

Rapunzel

 

PS: Just realized I had been looking at an older part of the thread and that some of the issues have been resolved now. Still - all my good wishes stand, of course!

 

Rapunzel2018
Member

Re: Anyone starting Chemo in December 2018?

Hi there,

 

I haven't experienced the tenderness, yet, but I was told it's one of the tell-tale signs of the process of all hair coming out. The hairdresser - who is looking after me/my wig - also said that they would not recommend shaving the hair but having it cut really short (all the hair will go eventually, but cutting it really short makes it easier to deal with what's happening - psychologically as well as practically). Am waiting for this to happen with a bit of trepidation, I confess.

 

All the best,

Rapunzel

Rapunzel2018
Member

Re: Anyone starting Chemo in December 2018?

Hi Shi - and everyone else,

 

Thanks for sharing this re UTI. I experienced a burning sensation when urinating right after the chemo and since I just had had a UTI I rang up the cancer helpline and ended up back in hospital for part of the night just to be checked and given more antibiotics to look after the bladder infection. Just finished taking the meds yesterday - hope it's now all sorted but would definitely go back again if needed.

 

I've also had a bit of a cold these last two days, and everyone I've spoken to on the phone (to ask for help re when you need to go in and which symptomps you can manage yourself) has been very nice and helpful. It's my first cycle of FEC, and I (and my husband) am (are) still very much figuring out which of my 'symptoms' are 'normal' side effects of chemo and which could point to a more serious problem. Finding it a bit nerve-wracking to be honest but at least I know that there definitely always is help out there.

 

Side effects have been ok so far, nausea and tiredness are probably the most noticeable so far (I don't like either but really dislike the first). The steroids disturbed my sleep quite a bit but gave me the energy to make more of the festive period. Once they had left the system, I noticed how tired I really am.

 

Let's keep fingers crossed the cold symptoms disappear fully and the legs recover from their wobbliness, too. Might ask for stronger anti-sickness meds for the next cycle. Does anyone get Emend? (I've heard good things about it).

 

Warm wishes to everyone,

Rapunzel