September 2016 starters

Going through breast cancer treatment Chemotherapy monthly threads
221

I’m on day 7 (nearly day 8 now!) of cycle 2 and really struggling with the nausea. It hasn’t completely floored me but I do find it a struggle to get up and get on with normal life. I can get on but I feel unwell. I’m currently on a regime of Ondansatron for 5 days and Metoclopramide as a back up. I rarely take the Metoclopramide because it makes me feel worse!

I am thinking of asking my nurse for an additional/different anti sickness drug. Should I do it sooner rather than later or will they not give me anything now until my next cycle? I was thinking of asking for Emend because a lot of people rate it. They can only say no it’s too expensive!

What would you advise?

222

Auntienanna

I totally agree with Anne. Phone the Oncology nurses asap and explain you’re feeling rubbish. They prescribed Ondansetron and Metoclopramide for me on cycle 1 and they were pretty ineffective so I phoned and by round 2 I had Emend added in the mix. Do phone before your next cycle though as Emend has to be taken an hour before treatment. I did feel slightly less nauseous on round two but still unwell so they changed meds again and added Cyclizine for this time. They have reduced my dose for this time to 90% and also cut overall sessions from 6 to 4. I did worry when they said this but they were perfectly happy and the nurse said many people have their chemo changed or reduced. It’s not one wise fits all. Obviously they won’t do this for everyone but just want to highlight its def worth phoning them. I was like you and struggling till day 8, so I’m hoping things may be slightly better this time. I’m there at 11am so I’ll soon know!
Sarah x

223

Thank you Anne and Sarah, I think i wanted reassurance that I wasn’t being a wimp, lol. I rang the Chemo unit and neither of my nurses were in but the one I spoke to suggested asking my GP to prrscribe Cyclizine. My GP is excellent so he will but there is the usual issue of trying to get an appointment! I rang the surgery and left a message for my GP to ring me. My friend suggested I ask the GP to prescribe Emend instead!! !

224

Hi Lisa

That’s a shame but they obviously have your best interests at heart. I’m just having round 3 as I type.
Hope you get on Ok with the rest of your treatment
Love Sarah x

225

I was bad for 9 days after cycle 2.  Now on day 11 and I am fine.

 

Metoclopromide - took it after day 5 drugs were all done - made me dopey and unable to eat or move for 4 hours- not taking it again.

Cyclizine had the same effect on cycle 1 - not taking it again!

 

I still say Emend was a godsend - kept the nausea at a controllable level for 3 days,

Yes you have to ask in advance - I phoned the helpline a few days before cycle 2 and discussed it.

I had to take it one hour prior to chemo - this delayed the whole thing by a couple of hours on the day but was worth it.

 

My hair is 60% gone and I feel pretty down about it.  I hate my wig and am going for a review on Monday.  Its too shiny and all the one blonde colour.   

 

Lisad your wig is gorgeous - different shades which looks natural - you could wear it anywhere and look great.

 

Hats4heads hairband with hair at the back…

not impressed at all with them.  The band was 52 instead of 57cms so far too tight.  The hair was far too fine and completely unconvincing.  

They would not reply to my email querying this - I actually offered to send it back to they could cut the hair in half and double up the thickness - but they ignored my email.

I thought I would add a piece to make the band looser.

I emailed today saying I had enough and wanted a refund (£28).  I suspect I won’t get it.

I will update you all.

 

Constipation (charming!) issues anyone?

I swapped from lactolose to Senna which is more natural my nurse says.  

It is a good bit better but it is quite a problem.

I am going to use suppositories next time (yuk) …I am sure this will be easier on my system

 

Keep positive and are you all enjoying this lovely autumn weather - get out for lots of walks  XX

 

 

 

 

 

226

Hi
I found Laxido drinks help me the most for constipation.
I take one a day to keep it at bay, but if you are bad take 3 or more a day.
The senna gave me bad stomach cramps. : (

227

Hi Ladies

A little tips re your wigs.

It will help a great deal to wash it with the appropriate shampoo before starting to wear it.

Let it dry naturally and brush through. It should make the hair and the whole wig a bit softer.

It often is a good idea to go to your hair dresser and get it shaped to your ‘old’ hairstyle and have it a

little’ thinned’ out, too. Mind you - it will depend on your style of wig.

Hugs

Sue xx 

228

I think I’m getting a cold :womansad::womansad: 

229

Hi - never thought I’d be relieved to know others are experiencing constipation from hell too. Now on day 10 of 2 cycle and symptoms including feelings of loneliness and isolation all subsiding into a reassuring pattern. Mouth driving me nuts but prosecco gummies from Lakeland a god send. Cant believe I cant stand alcohol in my mouth - i really dont mind others drinking either… quite bizarre. Found 3 blotches on my chest tonight, found myself reading about skin mets then decided possible puncture points from beasties was the preferred self diagnosis at this point on Sunday night. Took anti hist and rubbed on a bit of bite cream…I’m going to try your advice and wash the ‘wig’, took it out last week to hairdressers for a trim ( great advice it does look ok) and wore it on way home. Its been back in the box ever since… opting for scarves feels sufficient for now. Nearly bold - hubby thoutfully hoovered me yesturday…made us laugh heartily. Biggest learning this week was not sharing my ‘lows’ with people who are too emotionally volatile and it becomes about them rather rapido, although it does distract your own victim thoughts some what. The second thing is to be honest, stop protecting others as some dont need it and really will muck in if you stop trying to be independent and let them help. Looking forward to 11 days of heaven ( fingers and everything else crossed) before the last fec… its working… my lump has definitely responded and the inflammation almost gone. I reckon its back to about 7 cm. Not looking forward to predicted cummulation of fatigue but hubby on mission to frog march me everywhere so should help?. Be strong, be brave and eat whatever tastes delicious ever now and then! C xxx

230

Hi all!

 

Firstly I want you all to know that Hats4Heads eventually got back to me after I emailed them again.  They were very cooperative and said they would refund my headband wig with no questions.  They said they did not get my email about my complaints.  So I am happy enough with that.  Thanks for the advice from several of you about how to pursue my complaint.

 

Cacie - I am at exactly the same stage as you.  I developed an itchy chest rash with what looks like insect bites 5 days ago.  I got a course of antihistimines to take.  I dunno what caused it but its interesting you have had the same issue.  I am supposed to be on the good week this week but I feel very tired. 

Just say to yourself you are half-way through when you get Cycle 3 shortly - I counted 68 days to the final chemo!

 

I love my hat wig from Headcovers.  It looks just like my own hair did so I can at last go out in public.  It does tend to slip up a bit under a hat but I have a large head so that is why.

 

I’m still waiting for the Heathers Hair hat wig to arrive - it will be great to have an alternative.

 

I tried out a Pilates class on Monday at my local Macmillan centre and it was a great idea.  I met 6 woman who were just recovering from chemo and it was fantastic to talk to them.  defo going back.  We had coffee together after and it made my day.  Hope you all get the chance to do the same.

 

I just saw a ridiculous thing this afternoon…the local council putting up the wee Christmas trees they attach to lampposts!!!  Omg it is not even Halloween!!

 

Also Tesco has that offer of 25% off wine if you buy 6 bottles…guess who bought 12 bottles today!

 

Chins up!

Aine 

231

Aine
I’ve been meaning to get back to yoga, youve spurred me on. I think your point about a social group who are in it together will help with the isolation which seems to pop up randomly. A collegue from my course came round last night… she did at the same time during cycle 1. She is reaching out to me rather than me grasping at friends and family for time. What a god send… we listen to each other… so much in common… an unexpected gift of friendship blossoming… most unexpected as we are both extremely independent. Shes back same time next cycle ? Off to paint the kitchen! Slowly - lol, with a few brews and a couple of sit downs aling the way … chin chin! ?

232

Do you think that beasties are attracted to the chems…if they are bites ?
Cacie

233

Hi,

I wanted to let you know the chemo treatment is working. I had an ultrasound scan earlier today and my lump has shrunk by 1/3 of its size after 2 cycles of Docetaxcel (I am having 8 cycles of chemo FECT first before surgery to try and reduce its size). The lump is down from 3.1cm to 2cm, so although I am not looking forward to a week’s worth of horrid side effects following next Monday’s cycle 3, l now know the chemo is doing the job it was meant to.

I really hope this message gives everyone a bit of encouragement and wish you all well at whatever stage you are in your journey.

Hx

234

It’s coming to something when washing your wig is exhausting ???.

 

At least having a PICC line and not wearing the cold cap made the chemo administration painless and having a bald head made the Indian head massage a much more pleasant experience. I also had an offer of a meet up from a work colleague. It’s nice to know you’re being thought of by others.

 

Just waiting to find out what the side effects of docataxel will be. Will update for anyone who’s on FEC-T and not got to this stage yet. 

 

Best of luck to everyone else coping with this xx

235

Hello everyone!
Just introducing myself, next week will be my 3rd chemo. I’m on the Rosco trial & started off on TC regime.
Anyone else also on the trial? I’m hoping for just the 4 cycles instead of 8 plus me & TC have got on fairly well…We have an understanding you know!
Looking forwards to making some new online friends xx

236

Hi people!

 

Cacie - I didnt take the anti-histimines (couldn’t face any more stomach upsets) and my rash has almost gone.  My nurse says they would have made me very drowsy.  I’m sure they were not insect bites but an allergic reaction to something dunno what.

Yes the camaraderie is very cheering and i agree you get sick of talking to people who don’t have a clue what you are going through.

I have the garage full of paint and intended to paint the whole house - didn’t realise how sick I would be the whole time.  This time I haven’t the energy to do anything except stagger around the house trying not to look in the mirror!!

 

Delighted to hear some of you are seeing results from the chemo - so it must be doing us all some good.

 

SeeSee I am starting cycle 3 tomorrow and would be interested to hear how you get on with cycle 4 T drugs.

 

I worked out I have 9 weeks to the last poisoning session.  There is actually an end to this but you can’t actually visualise this until you are at cycle 3 i believe.

 

Lisad - how on earth are you going to go on holiday!!! You are exactly the same time scale as me and I can hardly get up and down the stairs most days.  If you knew me you would understand - I am usually the fittest person I know and am all go!  But this has floored me and the nausea has taken all my energy away.

 

Happy Halloween everyone!!

237

I have just been reading the August threads…the comments about the T cycles are frightening me ladies.

 

I am quite shocked after reading these.  I would like to know if we are all going to find the T cycles unbearable or do some people get through it without bad reactions.  

 

Has anyone got any thoughts on this?

 

 

238

Thanks for replying and offering me reassurance.  I am doing the Cycle 3 FEC tomorrow and then 3 cycles of Docetaxyl…is that what you mean by TC?

 

I have started to read the July and August threads… interesting reading indeed but also frightening.

As you point out the FEC treatment has also bad side effects and I have suffered bad nausea myself …I am now the weight I was when i was 16 and never thought I would ever see under ten stone again!

 

I have spent most of today reading the threads on this forum and I would like to sincerely thank everyone who has contributed.

I would have felt very isolated without this contact and I am sure many of you would also say that you find this enormously supportive even if we are doing it in a ‘virtual’ world.

 

Sue - many sincere thanks

 

A

239

Hi,

 

Cycle 3 chemo session completed today, went reallt fast as no cold cap (reduced session by 1.5 hours) and my oldest friend was wih me. I am feeling slightly knackered this afternoon, so won’t be pivking the kids up or cooking tonight !

 

I am on 8 three week cycles of FEC,  having 4 cycles of T (Docetaxcel) first and 4 cycles of FEC afterwards, followed by Surgery, Radio and Hormone Therapy. The 1st cycle of T didn’t go so well, I think they overdosed me and I I ended up being admitted for neutrapenic sepsis at the end of Week 1. So they reduced my dosage to 80% for the 2nd cycle. This was similar to the 1st cycle in terms of SE’s, they gave me different drugs to sort themouth thrush and I improved from the the middle of week 2 onwards and felt great, only tiredness in week 3.

 

Thank You for everyones encouragement and advice re: asking for other drugs to manage the side effects. I have been given some different drugs today to try and counteract the horrid bone pains which lasted for 5 days on cycle 2 and I liken to the contractions I had when having my 2 kids, so keeping my fingers crossed those will make a difference. They have also given me some different anit- nausea drugs to try once a day and said I can take Gaviscon aswell as the Lanzaprazole indigestion tabelets when needed. Just need to manage the drugs to counteract the Constipation/ Diar… and I will be sorted.

 

I am not looking forward to the 4 FEC cycles and will use all the great advice on here to understand what I  might expect and to help manage the side effects. I was hoping the Oncologist might tell me I only needed 3  + 3 cycles after seeing my scan results, but no such luck ! There is one positive, I will be on a set of drugs I know for my big Birthday in December :womanhappy:

 

Hoping you are all doing ok and the side effects are becoming more manageable.

Sending you big hugs.

Hx

 

240

 

 

Hi Ladies,

Well 3rd chemo session last Wednesday and yesterday my whole body felt like I had been run over by a bus! My whole body hurt like mad all my muscles hurt everywhere, really painful in trying to sleep and felt totally exhausted today, although have pick up hence posting now.

 

Went to see my breast surgeon last week re reconstruction, had a chat and once radiation has finished she plans to do some more reconstruction surgery to tied it up. Going to have some saline taken out as find it really bulky and ugly:womansad:

 

Had a bit of a breakdown moment and she realised that despite my bright happy face I am not really coping very well with it all emotionally and has referred me for counselling:womansad:

 

I was given a few tips today by two old ladies reading change of diet, have a diary free diet, take Vitamin C every day. Take bicarbonate soda twice a day, reduce sugar intake. Have a handful of almonds. – This is going to take some adjustment!:womanlol:

 

Aine – re holiday, my 5th session is the 7th December, so I am going on the basis that my body will be in recovery period for the Christmas break, hopefully I will be able just rest on the sun lounger all day!:smileyvery-happy:

 

Hope you are all Ok - just realising how horrible this all is and how I can’t wait for it all to be over :womansad:

 

Lisa xx