Starting Chemo April 2015

[whenmy2become1]

oh huneebee it does sound like you are going through it. Rough that they cannot get you anyone to talk to before June 😞

woofer - 4th Chemo already?? Although it is tough for you right now - think how far through you are  I have still only had my first chemo and despite your side effects wouldlove to swap places to be a bit further through. Not too long to go you can see the finish line from where you are. Hang on in there x

[Jane1978]

Woofer u say 4 th chemo is that ur first tax then that's made u hav those side effects ??!! My first tax next week after fec I'm very nervous 😞 x

[Huneebee]

Thanks. when2become1. My fingers are crossed.

Woofer, you're not the only one finding this chemo thing sucks!

I cried for hours last night. My Consultant emailed me to inform me after discussing, chemo being too much for my body, she's now had a change of heart and wants me back on FEC. I don't know whether I'm coming or going.

I've also started to build adhesions in my arm pit from the lymph node removal. So three months after a good recovery from surgery, I now have pain on using my left arm. I did all the exercises, I'm using my arm normally, but nothing can be done, as I always create adhesions after surgery.

I asked for help, the earliest counselling appt is the end of June. Chemo mostly sucks today. Day in bed me thinks.

[woofer13]

Hi all, sorry havent been on for a while. Now on my fourth chemo and feeling **bleep** every bone in my body is hurting and my feet are sore and my mouth is all swollen. I just cannot wait for this to all end I feel crap. Went for my genetic counselling today and going to have my blood test with my normal blood tests just before 5th chemo.  They have said there is a 20% chance I am carrying faulty gene I am hoping that is low and I am going to be lucky.  Should have the results sometime within the next 3-6 months.  Hope you all doing well sorry if I sound a bit down I am feeling sorry for myself today 😞

[whenmy2become1]

oh gosh hunibee I hope it is ok 😞 When they x-rayed mine after insterion they decided it needed to come out 1cm so hopefully it will still be within the limits and youjust need to find a way to make sure it stays in place from now on. DUCT tape if need be!!

Especially if you have rubbish veins. 😞

fingers crossed they say its ok

[Huneebee]

Oh goodness me, I so have chemo brain! If anybody can understand what I was trying to say, well done!

[Huneebee]

Hi. I only noticed it last yesterday. I saw numbers on the tubing and then later when I was dying my handbag, the Picc line card fell out of my folder. I didn't even know I had it. Then I realised that the numbers on it were linked to where the tube shd be.
As I have loads of allergies, the allergy dressing that cover the line are sticky. We have been trying to hold it securely when changing dressing, but obviously we weren't good enough! It's come out be 1.5 cm.

I phoned the hospital today. They're going to X-ray me before chemo on Wed. It can skip by a cm, they're ok with that, but as its over they need to check its position. I will be gutted if it needs to be taken out. I have no good burns, which is why it's in!

From reading all your comments, nobody seemed to have much pain with it being inserted. But apparently my veins are so rubbish, it was difficult to do, and extremely painful :-(. Fingers crossed it can be left alone.

[newey47]

thanks for that Mint.  Yes you are right.  I do the little massage every night but as regards to exercise, I find doing my normal b and b things like stripping and making beds, cleaning rooms and bathrooms and washing and drying and ultimately ironing is the best form of natural exercise for the arm.  Not forced exercises, doing things you have always done gets you back to where you were quicker I feel.

I do hope I will relax a bit more later on, I am sure I will

Take Care Val xxx

[whenmy2become1]

mint tea - thanks for that

re picc line visibility - i was so excited to find some socks in primark reduced on Saturday (bear with me!). They are stretchy kind of nylony stuff which I am sure wouldnt be great as socks - but are great as picc line covers with the toes chopped off..They had some with photos on the side and some with funky patterns. And you get a pair for £1 - bargain!

I also bought some over the knee black and white socks (also £1 each) which I am hoping to cut sections from to make covers too and just sew the ends to stop them fraying.

Looks much nicer than just the bandage tube 🙂

[mint_tea]

Val

so pleased for you! LOL!

I am lucky and never suffered lymph oedema. I was rubbish at doing many of the exercises after surgery, never massage, and TBH enjoy spas and hot tubs without much thought. Not saying that approach is for everyone, but I am sure you will relax over time and it will be less worrying (as most things are).

[mint_tea]

whenmy2become1

I am day 11 of my 2nd round and I would say my pattern of SEs has been almost identical to the first. As this has been the case it's been easier because i know what's coming. This was the same back in 2010 when I had chemo first time around, although by the 8th round my body had had enough and I have to say that round took me longer to recover from!

I so agree on the PICC line. I was worried, only though because it's so visible.

[whenmy2become1]

hunnibee  - OMG that sounds awful. How do you know your picc line has come out by a cm? I dont even look at mine I am so squeamish. I hate that the bit where it goes in my arm is not covered by anything other than a see through sticky dressing. Hate the thought of it getting pulled when the dressing is taken off - ewww! I feel like it should hav scaffolding over it to protect it

How has it come out??

Cant remember who it was said they might have to have "the dreaded picc line" as they have small veins. Honestly - picc line is fine. I am incredibly squeamish and hate needles and eally found it hard to come to terms with the idea of it (and the guy who put it in couldnt understand how I looked more stressed after he had finishd than before he started - it was just the thought of it in my body). BUT ...I am so glad i have it. Blood can be taken through it, antibiotics administered, chemo done through it. No more needles for months - I am definitely glad i got it.

I went in to hospital on Fri as i had a sore arm where my picc was. THey went to town on me - bloods, antibiotics (through picc) ECG x ray and then ultrasound. At one point they were talking about taking my picc out. OMG I HATED the idea of losing it!! Luckily i am fine and its staying in 🙂 But it made me realise how hard i would find the next few months without it - so if you have to have one - please dont dread it! 🙂

[newey47]

and just to share with you ladies - Oh JOY of JOYS - I have cleared the blockage - feel like a new woman lol and cereal and toast tastes just like............cereal and toast lol x

[newey47]

hi When

You are so right.  We do all need something to look forward to.  I have in fact just booked us 3 nights away starting next Sunday (should be my BEST week).  Need a break, not had one since early Dec and no deffo summer holiday in sight cos of all this treatment.  I have already had the surgery so hopefully should finish active treatment around end of Sept.  I have allowed myself a few months  after rads  to recover from it, then have booked 2 weeks on 2nd Jan to Fueteventura with OH and son who is coming back for xmas from Oz.  So will have proper Xmas, then get away straight after.  Dont know if I will have much hair by then, or energy but who cares?, we can do as little or as much as we like, no schedules, but some warmth will be good.

Yeah I wonder about spas, hot tubs etc, not that I go to many, but dont want to be excluded forever.  I would have though keeping the arm out would be ok.  Although they even told me NO VERY HOT baths ever, arm in or out, musnt let skin go red.  I am sure with time we will all be a little less worried and fearful of the dreaded lymphoedema, despite massaging every night for ever, and will relax a little over it.

Take Care Val xxx

[whenmy2become1]

I am on day 12 after first FEC and seem to have got off lightly (so far!! I dont take anything for granted at present!). Yesterday and today I feel completely normal. I have had complete hours where I have forgotten i have cancer.

I do find sometimes suddenly my leg gives way or I turn and my back really hurts - as if i have been bedbound for years and learning to walk again!

I am dreading the night of chemo 2 though. I was so ill the first time - not vomiting as i was on Emend but so so sick like travel sickness x 10000. It was really just that one evening so i should count myself lucky but just that one evening was so very bad! Perhaps it wont be so bad next time because i will be expecting it (last time because i was on emend i didnt expect to even FEEL sick) and because i know it will pass (last time i was scared I would be like it for a week)

I believe hair loss starts about now so I will shortly find out if my cold cap worked. It wasnt as painful as i expected though and I suspect thats because it wasnt tight enough. My scalp has felt a bit odd sometimes - but i am not sure if thats cos my hair is getting ready to fall out...or because I have only washed it once in the last 10 days!! Will let you know what happens

Molliana sounds like your "lower regions" are really getting hit hard.

Ladies who have already had ther second chemo...would you say you felt worse after or about the same? I have been told side effects can be worse as you go through subsequant doses. Do you agree?

PS

[whenmy2become1]

egret I have found a few threads on this forum re insurance and people seem to speak highly of Eurotunnel - I cant remember if anyone had claimed through them though.

i am going to put off the US till 2017 so I dont need to fret about it - and instead am looking to boook a luxurious weekend away for me and my husband in the uK for start of December (after I check with oncologist) as hopefully will be recovered enough from mastectomy to enjoy it. Thinking of Bath - log fires, mulled wine, Christmas market and general pampering.

Also going to ask if I can go to the Bath spa for a twilight package (sit in the rooftop hot tub and watch the sun go down). I know hot tubs and steam rooms are "not advised"  if you have lymph nodes out due to lymphoedema risk but wonder how bad it can be if I keep my arm out of the pool. Also dont know if I will be post-surgery for long enough to have no infection risk there.

Need something lovely to look forward to (will still have radiotherapy and reconstruction to get through but I think I deserve a few "celebrations" along the way 😉 )

[Jane1978]

Sarah u must be really anxious and frightened !!!!! I would be doing same ringing someone and I'm sure they will do A us to
See if anything suspect !!!!! Sending lots of positive vibes ur way huni good luck!!!!! Iv got my half way thru us on tues morn and I'm very nervous for it !!! The worrying down times makes u more ill than the chemo 😞😣😁😘

[1981mum]

You ladies do make me chuckle
Glad everyone is doing ok
I'm just enjoying my normal (ish) 2 weeks
X
Take care

[SaraA]

Hi ladies I started chemo 31st March
I had 20 lymph nodes removed and a lumpectomy All on my left side. I really hate fec one more on Tues then 3 docetaxel. Today I found a new lymph lump under my right armpit and I'm worried about that and the intense pins and needles in my hands arms and face. Really scared but dont want to worry family so trying to show im fine and act strong. But its nighttime and im alone in bed amd brain is working overtime. I am going to call breast nurse tomorrow so hopefully get checked Tuesday when I am in for chemo.

[newey47]

So glad you are feeling a bit better now Molli, then hopefully you have a much better week before the next lot.  Val xx

[Molliana]

Lol Val 🙂
Tussie hope you feel better today. Perhaps the day in bed was just what you needed.
If anyone wants an update on my nether regions ...They seem a bit better today! Had a peek under all the cream before I popped in the shower and reapplied it all! Four more days of fluconazole and some more days of sudacrem and whatever the other cream is and I should be right! xx

[Tussie]

Hi all, had a bad day yesterday with all the rubbish SE, just stayed in bed most of the day under the duvet. Emerged today a bit better and hopefully onwards and upwards! Did't eat anything yesterday, hope I can get something down tonight.
Take care everybody x

[Tussie]

Huneebee, good luck with the reduced chemo dose, hope you can tolerate it. x

[Tussie]

Hi Eira, glad you joined our group, I find it really helps to read what we all go through to beat the beast and realise we are not on our own with our struggles. x

[newey47]

Hi Eira, welcome to our little group.  Yes you are so right, knowing you are going to get a really good last week and a reasonable middle one just keeps you going.  Think it would be so different if we didnt have that respite......dont think I could cope with it at all otherwise. I had the same as you left MX and node removal on March 10th.  How are you doing with that.  Did you have reconstruction?

Val x

[newey47]

well had me McDs and sort of enjoyed it.  Why is it all the food I eat and all the drink has to be extremley hot,. even toast.  I just cant tolerate anything warm at all, the taste is all wrong.  Needed a fresher hotter McD to have really enjoyed it.  Still no anti sickness pills today so thats a good sign.  Real griping stomach today now though, really need a good pooh lol.  I know too much information lol.  Hopefully it will settle now not taking the pills.  Then I will feel really on the mend.  Take care all Val xxxx

[newey47]

Oh Hun I do so hope it will be much easier for you this time so you can continue with the treatment.  But there are back up plans and they will know what they are doing. I will have all my fingers and toes crossed for you. Val xxx

[Huneebee]

Thank you Mollianna. I'm hoping it goes better this time. I'm back in on Wed. However I have just realised my Picc line has slipped out by a good centimetre! So looks like I might be visiting the hospital before then! Ho hum.

[Eira70]

Hi Ladies, hope you don't mind me joining in. Had first chemo on 18th April after left mastectomy and node removal. Only just found the site and have managed to lose two hours going over all your thoughts since beginning of April. WOW so amazing to read all the things you feel you are experiencing on your own are consuming your lives too. Have been feeling 100% better last week though. I feel knowing this will def get me through next toxic dose. Xx

[Mrs_Merc]

Hi All,

I started chemo on the 30th April - may I join your thread please?

I am having weekly Taxol atm...

Regards,

Pen

[Molliana]

We will all keep our fingers crossed for it being easier on you this time. When are you going for it? With the change in drugs\doses it might be so much better. Try not to worry because worrying won't change it. You just have to go and we will all hope it's kinder to you xx

[Huneebee]

Good lord Molliana! You are all creamed up! I hope it eases soon.

I saw the Consultant Thursday. My white cells are up enough to try another dose of chemo. But they've said my damaged digestive system won't withstand a Full dose of FEC. So I'm having EC, but with a low dose of C. If I get really ill again, that will be their last attempt at chemo. :-(. Mixed feelings, I know chemo's nasty to go through, but without it, my prognosis is reduced by quite a bit.

[newey47]

oh molli I do feel for u all creamed up, but u do make me laugh with the vision of it all.  hope you are more comfortable today.   val x

[Molliana]

I had macds for breakfast this morning. Yum.
My bum is smothered in sudacrem, my bits are smothered in thrush cream and the back of my throat is burning off with acid reflux!
I now have a craving for chicken noodle soup!

[newey47]

Hi all not too bad today, still a bit sicky, tried to deo without the tablets cos they baulk you up so much, but had to give in at lunchtime. Have managed to have some chicken noodle soup and just enjoyed spaghetti bolognaise.  Its gotta tast of something, made cauliflower cheese last night and it tasted absoutely disgusting.  I usually go back for seconds....... hey ho

Lets see what tomorrow brings, want to go shopping and fancy and MacD;s, will i be able to eat it without gagging i ask?

Hope you all feel better tomorrow, not had the thrush thing,will look our for that then.  lol. 

Val xx

[Jane1978]

Hahahahaha I have thrush since we been talking about it ??!! Had a tablet but still suffering !!!:( hope u not too bad x

[Molliana]

How is everyone today? I have pain coming from every hole in my body 😞 Ho hum.

[Mrs_Merc]

I was wondering if you ladies would mind me joining in your thread please ?

I had 6 x FEC-T starting back in May 2012, and this forum was an absolute haven for support. I made some very good friends, and even met a few of them - we are still in touch now.

I had my first Taxol chemo (this time around) on the 30th April, but Im having it weekly, so I had my second yesterday - and it wasn't very nice. I had a bit of a bad reaction and they stopped the infusion and gave me a load of other drugs etc. The Dr came round and said it was ok to continue but they had to slow the infusion right down. I really hope this isn't going to impact the treatment because yesterday's treatment was still only 50% strength and I am worried that I don't have the time left to have to stop, slow or change the treatment plan again (I have agressive secondary mets in my liver).

Sending healing thoughts and love to all those here,

Pen xx

[Mrs_Merc]

I was wondering if you ladies would mind me joining in your thread please ?

I had 6 x FEC-T starting back in May 2012, and this forum was an absolute haven for support. I made some very good friends, and even met a few of them - we are still in touch now.

I had my first Taxol chemo (this time around) on the 30th April, but Im having it weekly, so I had my second yesterday - and it wasn't very nice. I had a bit of a bad reaction and they stopped the infusion and gave me a load of other drugs etc. The Dr came round and said it was ok to continue but they had to slow the infusion right down. I really hope this isn't going to impact the treatment because yesterday's treatment was still only 50% strength and I am worried that I don't have the time left to have to stop, slow or change the treatment plan again (I have agressive secondary mets in my liver).

Sending healing thoughts and love to all those here,

Pen xx

[Egret]

Hi Whenmy2become1, Insurance again! After ringing a whole page of numbers (the Maggie's list) , I obtained ten days insurance in May for Italy covering specific pre-conditions including bc and undergoing chemo. It was VERY expensive. I found out that many insurers like a two months post end of treatment, especially chemo. My guess is that any insurance for the US is likely to be expensive.
If anyone had claimed on Eurotunnel insurance and got paid, I would really appreciate their comments, as this option is clearly affordable - but would it work? Egret x

[Egret]

Thinking of you, big hugs, Egret x

[Egret]

Well done Lena2! Golf? Gym? Well I will follow your example.

[Molliana]

Mint_Tea. Thank you. I am 41. Just feels a bit weird not having one.
I am awaiting a call back from gp for the fluconazole. I am hoping she will do me a pprescription over the phone. Bcn is also going to send me a form to get medical exemption and she said that lasts for five or ten years while on active treatment so however long I am on tamoxibollox for! 🙂

[newey47]

Oh thanks for that Mint you have put my mind at rest about that at least.  And the Letrozole, what do you mean it didnt work for you then?  Hopefullly I wont get many SE either then.  Still thats a way down the line yet.

Yeah i know what you mean about the yukky taste, salads always work for me with lots of dressing. I am still gagging a bit at times, be glad when can stop anti sickness think it was 5 days or so last time as they baulk me up so much.  Taking lactulose which tastes awful and senokot. Went plenty yesterday so hoping this will keep me in check,.  But once can stop anti sickness tummy seemed to return to normal with the help of my bran flakes every morning and home made rhubarb fool......

Val xxx

[mint_tea]

Molliana

My periods disappeared after 1st chemo (in2010 when I was 41) and never returned. I think totally normal to stop during chemo and think I was told 50/50 chance of restarting after chemo (frankly I was happy to see the back of them!).

[mint_tea]

Val

I always look nice and "glowy" for about 3/4 days after chemo on face - it's SE of steroid.

Also I think you will find, you'll probably start letrozole shortly after finishing rads. Letrozole was very easy to tolerate for me (although it did not work for me-boo!). No SEs at all.

I am waiting for my yucky taste to go away then I will be happy for next 2 weeks. Was very down yesterday as struggled to find anything I wanted to eat and drink. I am drawing up a list of all the foods I will consume as soon as taste is back!!!

[newey47]

Hi all you lovely ladies, hope you are all feeling ok today.  Well day 3 after chem02, not too bad, bit sicky this morning but nothing I cant manage.

I just wanted to ask, does anyone else have darkening of the skin. Especially face, neck and chest, look like I have been in the sun for some while? think i did read somethere that that is a SE, just wondered if any others have had it.  Its good cos I look healthy, apart from bald head lol, But OH is worried..........

Any thoughts?xVal x

[T3D]

Very happy with emend. No visit from Mrs pukey during the night. I'm a little light headed and was slightly dizzy but SO happy to not be sick! Having a pj day today though. Hope everyone else is doing well xxx

[T3D]

Hi mollianna no you definitely don't need to pay. You will get a little credit card that gives you free prescriptions for the next five years. I picked up my application form from boots and got my breast care nurse to sign it but I believe your gp can sign it too. Also if you need to pay for anything before your card arrives you can save the receipts and claim it back afterwards. X

[Hazelr]

Got my form from GP surgery and they got doc to sign it I think and sent it off for me. No charges for drugs for 5 years! X