December 2015 chemo

[Ele J]

Hi Red Robin

Sorry to hear you are feeling so rotten. It is difficult to deal with everything that gets thrown at you, and changes from what you were expecting are particularly hard.

I'm a bit ahead of you as had my last chemo on 2 Dec, and start 4 weeks of radiotherapy in Jan. From what I understand, radiotherapy is pretty standard these days in addition to chemo, and if you are younger (as I'm guessing you are from the age of your kids and your comment re fertility), they really like to do everything to give you the best chance of it never coming back.

The best advice I was given for all of this is to just take one step at a time. If you have surgery first, just focus on healing from that and getting your strength back. If you have chemo, just focus on dealing with any side effects rather than worrying about the next step. Easy to say but hard to do, I know, but defo good advice.

That said, the term I've heard loads of time on this site in relation to rads is that it's a doddle, so I really would not be concerned about having rads after chemo. I'll let you know if that's true!

Good luck for your chemo...it won't be anything like as bad as you're imagining, and your fellow Dec ladies on here will be there for you!!

And a parting thought, if your first session is 18th I'd put money on you feeling pretty ok on Xmas day, so enjoy! 🎅🏼🎄⛄️

[red_robin]

HI ladies just found this thread. I found out last thursday my picc line goes in on 16th Dec and Chemo starts 18th Dec. I am pooing my pants right now to put it very politely. I have two boys, 7 and 10 (almost 11) and seriously hoping I will be ok for christmas and to travel the hour and a half to my family so I don't have to cook etc. I am having Zoladex to help preserve fertility. I am terrified of needles and the thought of the picc line going in makes me so anxious already. Then the thought of the chemo on top....

Also got home today to open a letter from the hospital that really confuses me. It says FEC-T followed by radio whilst on chemo. Not at any appointment has anyone mentioned radio. Just chemo. I even asked at one appointment as was desperate to confirm all the **bleep** that was going to happen and they said there was nothing on my notes about radio. Don't know where it has come from but I don't want to preceed with anything until I know what is happening.

Seriously don't want radio too. Have read it is worse than chemo and don't see the point of targeted treatment after a systemic treatment.

Feel like I would be better off taking my chances jumping in the river right now than going through all this and the confusion it comes with. Don't have a clue if need radio now or not and thought I was all sorted just 6 chemo cycles and done. Now who the hell knows.

Feel so misserable since last thursday this is the icing on the cake. Already feel like I am going to throw up 99% of the time thanks to the anxiety this is putting me through. Feel so down.

[Nicola47]

Hi Gillian

Thanks for the advice on Emend the nausea is draining, I am on a mission to get better sickness meds in place for round 2 as this will be nurse led not oncologist led as it takes place on New Year's Eve. I too have private health care but as I have another very rare cancer so I have stayed within the nhs as things arefar from straight forward!!! 

So glad your feeling ok now, you give me hope 

Hugs xxxx

[Gfnich]

Hi Teresa,  the treatment itself is actually ok.  From my experience you are out of sorts for a week so by xmas should be on the up.  My next one is 22nd so xmas will be a bit trying but will do my best to watch everyone cooking. My kids are up a son 25 and daughter 21 training to be a childrens nurse in Sheffield.  She will be home this week for xmas.

hi Nicola, pleased you are over the worst.  Did you get Emend anti sickness?  If not ask for them they are really good and some areas only seem to give them if the cheaper ones dont work.  I am having my treatment at the Nuffield as we have private health insurance through work so I think they give you the pricey stuff anyway.  There are others on the forum though who did get them when they said the others didnt work.

Sam, Marina, hope you are ok you are getting there.

top of my scalp hurts now, I think it is the start of the hair falling out. Xxxx

[Bibi44]

Tandy don't panic about getting wigs/scarfs.  Mostly our hair fell out days 17-24 & over a period of time & for some even after chemo 2, so plenty of time to get all your headgear sorted out. All the best for your first one . . The waiting is the worst bit.

Nadz I have a port & it's a godsend on chemo days, despite being slightly uncomfortable for the first few days, you will quickly get used to it.  Best wishes to you too. BBxx

[Teresa1978]

Hi All I'm having my first lot of chemo on Thursday (17th) fec-t, have no idea what to expect... An thinking if I expect the worse it will be ok. I have children 2,4 and 14... Am hoping I will be ok for xmas x

[Nicola47]

Hi everyone,

Five days after my first FEC and still a bit rough, I was sick for the first few days but this has settled down and now I just feel nauseous and very tired, don't know if this was due to the migraine form the cold cap or from the drugs themselves. The drug administration was fine ( given to me by one of my neighbours who is a nurse on the ward) the cold cap was intense however after 15 mins you do adjust to the cold. I feel as if I have had some good support, with all side effect med's provided and nurses from the ward only to happy to answer questions over the phone, I also had the district nurse give me a call on Saturday in case I needed a visit. Do feel as if I am starting to pull around again thanks for everyone's support. 

Hoping that Sam and Marina are feeling ok, listen to your body and as Gillian said.

Big hugs Nicola xxxx

[Nadz]

Hey Tandy, I was originally booked for the 18th but it got moved as I'm now having a port placed due to how bad my veins are! Though it works out a's I'm having eggs collected on Friday instead! Good luck with it xx

[Tandy 4]

Thanks hen, I'll try and drink lots of water over next week! I'm not getting notifications when someone posts I'll have to check my settings?, xxx 

[JenJen]

Hey Tina x the things bibi refers to are fibres you can sprinkle onto your scalp if your hair thins covers up the pinkness x key tip water try drink 2 litres a day and especially a couple of days before and afyer chemo before helps get your veins plumped and easier to find
Jen x

[Tandy 4]

Hi Marina (and others!) I'm starting Ftiday 18th! 😧 Just found this thread and about to read all replies! 👍🏼

thanks for all the advice guys..... Bibbi, what's the stuff off amazon for? Hair thinning? I trying the head cooling system and dreading the list of side effects to come! Having 3 sessions of FEC then 3 of T...... 

Ive nit got any scarves,meats or wigs yet......😧 My Macmillan nurses has said she's got my voucher ready but I haven't a clue where to go or what to do with it!?....... My veins are not great so dreading that too xx hugs to all. Any further advice before Friday greatly appreciated! Thanks xx Tina 

[Sam B]

Totally exhausted here to Marina , I've been sleeping on and off all day.
Thank you for thinking of me it certainly helps xx

[Marina]

Feeling more positive today, just wiped out. Taking it easy. Thanks for all the support.
Marina

[Gfnich]

Marina, Sam,  hope you feel ok today, thinking about you both.  Gillian

[Nadz]

Thanks guys. Had my hair cut short and will be doing the cold cap, or I'm meant to be, as I've said I seriously know nothing about the next step. Currently undergoing ivf so my emotions are all over the show.

[Sam B]

Just call BCN and ask if they have forwarded voucher to shop as I was told that was usual way however as I had a tight window they gave me to hand deliver.
You definitely won't miss out .
I know you just want to be organised , same as me , wig , heathers hair , scarves , sleep hat .... Xx

[Lynne1955]

Hi No I organised it myself but prior asked the BCN where I could go.  In the end went with a non N H S one but have chosen a N H S one as an alternative.  Best wishes Lynne x

[Nadz]

Ah OK Sam, I only very briefly met my medical oncologist a couple weeks ago. There was a mix up with my apt(they had put the wrong person in) and the info she gave me wasnt really that helpful, she kept saying ti speak with my chemo nurses, who were meant to contact me within 2 days..never happened, had to get my bcn to chase it up for me. Finally booked for this Wednesday. Do you think they will provide me with the voucher? Getting a bit worried that I have missed out now and that I'm very unprepared

[Gfnich]

Hi marina, Sam,

dont worry too much about the SE.  Looking back for about a week I was not "ill" but not myself.  Rest drink losts of water and eat just what you fancy.  i am day 12 and back to normalish, had wine and M &S dine in for two.  It passes, dont try to do too much..  Give me a shout if I can help.  Gillian x

[Sam B]

Marina it's a tough time and lots to get our heads around , big hugs to you
Nadz I got my wig voucher at my first oncologist appointment do I can sort it out asap , voucher last Monday and wig fitting and wig received Thursday xx

[Marina]

I had EC.
Starting to feel a bit down which is not like me. I have been so positive up until now. Getting scared of SE and what is to come. Spent the afternoon on the sofa watching TV.
Marina

[Nadz]

Hi Lynn, did you organise the wig fitting yourself then? I've not been told anything about it except that the NHS pays for 100 for it. I will check out the thread for ideas. Thanks you

[Sam B]

Hi marina
Not feeling too bad , just a little tired but that could be due to lack of sleep from steroids .
Also not a good taste in my mouth but ducking pineapple and pear drops as recommended .
Taking it easy . Still can't believe ice had chemo . I'm on TAC ladies xx

[Lynne1955]

Hi Nadz
I dont know what others have done but I start my chemo on the 23rd and already have my wig and several hats. Wanted to be in control. With regard to how you can prepare for chemo there is a list on a thread on here which gives some help. I have bought so much probably over the top but as its Christmas thought I would get everything just in case. X

[Lynne1955]

Hi Sam and Marina

so glad chemo went well and you have had few SELong may it continue.  Did you both have FEC or was it something different.

lynne xx

[Marina]

How are you Sam? How did it go yesterday? I'm fine today but taking it easy.
Marina

[rosie14]

Hi Ladies just popping in from the April 14 thread! Sorry you ladies are now part of the club. This forum provides tremendous support. You will grow very close to the ladies on your thread and make friends form other boards too! Five of our thread met during the summer for the first time and felt as if we knew one another. As our journey progressed we discussed non cancer issues jobs, families etc!
Although most of our ladies have completed their journey we remain bonded together. Two of us still have further surgery relating to reconstruction.
Together you will make the journey! No-one else will ever really understand and can empathise with you totally than ladies that have been or are still on the journey.
I notice one or 2 of you are worried about wigs and hair. My hair started to fall out after my second chemo. I had it cut short before commencing. You will know when it's about to happen you will feel a burning session on you head and a few days later it will start to fall. You will notice it on the pillow and in the shower.😢 It takes a couple of weeks or more for it all to become noticeable . It was at this stage that I got DH to shave the rest off I had a wig for going out in at night but during the day I wore a headscarf. It is a personal decision, some ladies get their head shaved from the word go as they can't face the fall out procedure. The good news is ladies you won't have to shave your legs for the next few months!😄 But the best news of all is that it does grow back!😌 I finished my chemo in July 14 and I had a thick covering of short hair by November! At the end of January I went to the hairdressers for a colour and trim!😊
Good luck ladies hope this post helps!

[Gfnich]

Are you ok Nicola? X

[Gfnich]

Hi Sam, Marina,

hope we you feel ok today, best advice is don't try to do too much.  I am day 11 now and yesterday felt almost my normal self again.  Looking back the first three days I tried to do too much.  Drink lots of water and chill.  

Gillian x

[Nadz]

Hi, my chemo starts on the 24th, I haven't met my chemo nurses yet and have no idea what to expect. Am I meant to organise my wig myself? I don't know what I need to prepare for it.

[AnnDaw]

Hi Sam glad your 1st chemo went ok and for you Marina as well.I have my 2nd next Wednesday tinned pineapple for freezing at the ready xx.

[Sam B]

Glad m
Ditto here to x

[Marina]

All went well today. No side effects and eating normally.
M xx

[Lynne1955]

Good luck Marina hope it all goes ok. X

[Sam B]

Marina
Mines tomorrow but can't face cutting my hair yet
I know it has to be done xx

[Marina]

Hi ladies,
Had a drastic haircut today - very short! First chemo tomorrow...
Marina

[Sam B]

My chemo has been moved a few times over the last 24 hours but now it's happening tomorrow !!!
My first TAC .
Xx

[Gfnich]

Hope all goes well tomorrow, let us know how it goes

gillian x

[Nicola47]

Thanks for the insight Gillian glad your on the mend xx

[Lynne1955]

Hi Gillian

glad to see you are doing well.  Its good to know how you felt especially as my chemo is on the 23rd.

Lynne x

[Marina]

Glad to hear things are looking up Gillian, and thanks for the update.
Take care
Marina

[Nicola47]

Thanks for the advice, have machine booked that's why it's Thursday, as it's fully booked for Wed. Preparing for the best but expecting the worst but I know I will regret it if I don't try. X

[Gfnich]

Hi girls,

thought it was time I gave you an update :). I had my first FEC last Tuesday and this is how I honestly have fe over the last few days

day 1 felt ok, treatment itself is nothing to worry about, was wide awake through the night

day 2 had a fuuny taste in my mouth and was mega thirsty.  I made a mistake and forgot to take my steroids

day 3 was ok in the morning, got my wig.  By teatime felt like I was getting the flu aches and pains and was really tired.  Not sure if that was because I didnt take the steroids the day before! Bad heartburn so got some Lansoprazole fro GP and that sorted it out.

day 4 was just tired was trying to do things and really couldnt be bothered

day 5 same as day 4 and fed up I think that was the steroid low that Jen told me about.

day 6 felt much better, walked the dog and did some jobs in the house.  Bit of a funny mouth feels rough inside.

in summary not as bad as I thought.  My advice is dont do too much and if you are suffering give the team a call.   If you want to ask me anything drop me areplyand will try to be honest with my reply.  

All the best girls

Gillian

[Bibi44]

Hi Nicola Top tip: try 2 paracetamol/co-codamol 1 hour before cold cap goes on.  It makes it a lot easier.  If they have machines ask for one.  You feel it as it falls between 18 & about 10 degrees & then the intense cold goes.  Just stick with it & hopefully it will work for you.  You should know that you will probably lose a fair big of hair, even with the cap, but I've had 8 treatments now & still have full cover, albeit I reckon I've lost 50%. Also worth investing in some Topik from Amazon in case you get any thin areas.  Sounds mad, but it works. BBx

[Nicola47]

Hi Marina, 

I've had my hair cut in advance, because I want to try the cold cap, have bought the chemical free shampoo and a silk pillowcase as recommended by the nurses. Are you trying it and do you have a wig already? 

I start Thursday and must admit I am very apprehensive!

Nicola

[Lynne1955]

Mine is just above the shoulder too. Start chemo 23rd thought I could get husband or daughter to chop it once it starts coming out.  Have got wig and headgear for when it happens. X

[Marina]

Hi everyone,

My first chemo is this Friday and I'm having a dilema about my hair. The onco told me it would fall out in about 18 days after chemo, and I'm going to get it cut short, it is shoulder length at the moment.

The problem is I don't know whether to have it cut before the chemo or after. Not sure if I will feel up to it after, and also not sure if it will start to fall out sooner if I go to the hairdresser after chemo and with the wash, cut and blowdry it will start falling out sooner with all the handling.

I'm waffling but the nerves are kicking in, fear of the unknown.

Marina

[Sam B]

Thank you Lynne
I agree the waiting is so difficult.
Xx

[Lynne1955]

I wish mine was sooner.  The wait is the worst bit.  Good luck for Monday. X

[Sam B]

I got told today my chemo starts next Monday !!!
Xx