September 2016 starters

Going through breast cancer treatment Chemotherapy monthly threads
181

Hi OldDawn63
I have some fringes from Heathers Hair which are free to ladies going through chemotherapy. Just pay postage. And good for a bit more coverage under scarves or hat.
But this piece can be worn without a head covering as it is .
If you click on the one I ordered and then click on the tab above-’ what’s inside,’ it shows you how the inside is constructed. It is different than the fringes. There is also a 360 view which is helpfull.
It is more expensive than the fringes but another alternative to scarves without being a full wig.

I will try and work out how to attach a pic of me wearing it in my profile library . Beware the glowing red face at the moment. As just had chemo on Monday. ?
Vx

182

hair band with hair attached.jpg

soft hairband and sholder length wig attached.

sorry about the red face.

183

Hi Blueash
Liking the caps x
Vx

184

I love the caps with hair! I have received some little sleep caps from Bohemian Headwear, I think they must be the same as those that Dawn has because they are a bit Puritan looking! I got the ones with a pattern on the front and I do like them. I also ordered a couple of hats from Cosihats. I think that’s the name of the website? They are coming from France so haven’t arrived yet.

My hair has been coming out in dramatic clumps this week; my poor cat was rather alarmed by this apparent monster being thrown into the bin the other morning!! I’m getting it cut today, I’m not sure I’m brave enough for the shave but I’ll see what my hairdressers says when she sees the state of my head.

I hope you are all feeling well today. Have a good Friday xxx

185

Hello ladies. This is my first message on this thread and indeed on any thread ever!

 

I had my first FEC on 19th Sept so am on a similar path to some of you.  I have been following your messages with enormous interest and they have given me lots of support and very useful info on lots of important issues I am facing now.

 

I was very sick for 14 days - very bad nausea, shaking, out of breath, etc. It was like being in love again!!!

 

I had to sit outside all day to keep the nausea under control.  It lifted and I can’t believe I am back to ‘normal’.  I took dexamethasone and ondansetron for the first 3 days.  Day after chemo i felt great and went shopping!  But it hit me that evening.  I then took Cyclizine which made me a complete moron for days.  So I stubbornly refused to take anything else and suffered on.

I am told Emend is the best so when I start cycle 2 on Monday Im going to cry until I get that!

 

My hair is falling out in wafts behind me when I move - a tip from a friend was excellent - order SILK pillowcases - they stop your hair catching on the pillow - it really does help.

I got the ones with silk on one side only so they don’t slide off the bed.

 

A pharmacist pal who did FEC chemo recently also gave me a tip for eyelash and eyebrow loss. 

She used EYEBROW LIPOCILS EXPERT from TALIKA.COM and hers did not fall out. Costs £26 but well worth it.  Apply twice per day.  Im using it and so far so good on day 20.  I got it from a pharmacy.

 

Also I got AVEENO products on prescription.

 

I sent for Hats4Heads hairband with hairpiece for the back of your head - far far too little hair on it - I couldn’t wear it.

 

I’ve sent for the Headcovers under hat wig and am expecting to get it in a week or two.  Thanks for the comments on other alternatives - I will send for them too.

 

I got CUTAN hand sanitisers and have them round the house.  I got fluoride toothpaste and a soft toothbrush and corsodyl mouthwash.

 

Does anyone else have a PICC line in?  I got it the first day - apparently most people end up getting it after messing up all their veins anyway.  Its a bit of a nuisance to look after but worth it.

 

I am really dreading being told on Monday that my bloods are not back to normal and I can’t have cycle 2.  Any tips?  I am resting and trying to eat small regular meals.  I have lost a lot of weight and don’t want to lose any more.  I am drinking lots of water.  I’m planning Xmas and if I am delayed a week I won’t be able to enjoy my dinner!

 

I’m not letting this get me down and am keeping positive - it will all be over in 3 months.

 

I just bought a big bag of narcissus bulbs and a going out to plant them everywhere.  By the time I see them again the chemo will be over…

 

Aine x

 

 

186

Hi Aine

Sorry to hear you have felt so rubbish. I totally agree with OldDawn though and persist until you get the correct meds.
My team have been good and after Nausea on round one they switched me to Emend. I’ve just had my second round and they’ve switched the Metoclopromide this time too. I have had pretty bad side effects up to day 8, and my ONC has decided to drop 2 chemo sessions so I’m now having 4 instead of 6 and the next 2 will be at 90% dose too. They are quite happy that dropping 2 won’t affect anything as that was the first thing I asked.
In regards to eyelashes. I have been using Revitalash which another lady recommended and so far so good. Whether they last through to the final round remains to be seen!
Sarah x

187

I just wanted to remind you all that because of your diagnosis you are entitled to free prescriptions for at least 5 years - you get the form from your gp.
I’m from the Sept 2013 group & its saved me a fortune ?

188

I have a prescription pre payment card; I wonder if I could get a refund on it? It would save me £104 per year so definitely worth asking when I’m in the surgery for bloods on Tuesday.

189

Thanks for all your comments - this thread is such a great idea!

 

Blueash - no I’m not getting GCSF but will ask about it if there is a problem tomorrow

 

Lisad - congratulations on your birthday - I hope you were able to have a wee celebration!

Yes that sounds like what I got LIPOCILS.  It is definitely for eyelashes and eyebrows too.

You are a week ahead of me on this journey.

I got a funny card from a friend saying ‘Don’t tell me you are going to be with me on my journey unless you are taking me on a cruise!’

 

Old Dawn (you are not that old!) I will ask for Akynzeo too and thanks for all the supportive advice - you are right I won’t suffer in silence again.  And maybe I will keep some of my hair - fingers crossed.  It is falling out a lot today.  I used dry shampoo on it today.  I’m afraid to wash it in case it all falls out.  It looks awful but I just want to go to hospital with hair tomorrow.  I will get the wig then.

 

However I noticed something yesterday which some others might have noticed.

I went out to walk the dog at 8pm in the cold air and I noticed that it almost stopped my hair loss for the rest of the evening.  I think it was the effect of the cold on my scalp.  Perhaps its the same principle as the scalp cooling cap? 

Anyone else notice that?

 

Sarah04 that is very interesting that they changed you to 4 cycles.

I am doing chemo as a precaution in case there are any stray cells anywhere else.  I was given the all clear after a mastectomy and implant reconstruction but they recommended chemo as the tumour was grade 3.

 

Heather’s Hair was a great website and I have sent away for their hairband with hair at the back.

 

Also my daughter uses hair extensions sometimes so I sent away for some.  Only £9 and you can clip them yourself quite easily onto a hairband.  I tried them out and they look fine.  There are 8 pieces so you can have a thick or fine look under a hat.  You have to trim them to size which I haven’t done yet.

Florata Fashion Hair clip-in hair extensions. jakeoffer.com

I got them from Ebay.

 

Keep your spirits up and CARPE DIEM everyone.  

I didn’t get my bulbs planted as it started to rain but that’s my task for today!

190

Dawn - I ordered 2 sleeping caps but now i better order a few more.

Lisa - book early for your cruise.  I have not been on one yet either.  I hear great reports about Alaska and the Scandinavian ones if you don’t want to do a hot one.

 

I got the flu jab and the pneumococcal one (dunno how to spell that!) two days ago.  Flu no reaction but have a big sore swelling with the other one.  Just took paracetemol.

 

My hubby is reluctant to get the flu jab cos he’s a complete coward.  Anyone else get their family members to get it?

 

A

191

I shall definitely enquire into this when I’m at the docs for my pre-chemo bloods on Tuesday.

I had my hair cut off on Friday; my Hairdresser refused to shave it but did her best with a pixie cut to hide my bald patches. I really dislike very short hair on myself so yesterday I wore my fun rainbow wig and today I wore my fringe, sleep cap and hat. My sensible adult wig has arrived at the wig suppliers but I won’t be able to pick it up until a week on Wednesday due to prior commitments and my only free day being my chemo day.

I feel much more comfortable now I’m not brushing the equivalent of a kitten off my head twice a day. I just brush my pillow with my lint remover instead!

I’m rather dreading Wednesday, not because receiving chemo is particularly nasty but I know I’m going to spend the rest of the day feeling very unwell and being sick, and then feeling sick for days afterwards. Still if it means that any cells thinking of mutating are zapped it will be worth it in the end.

192

Hi Lisa

So sorry you feel like this. It sounds like my second session. First one wasn’t great but second was so much worse. Very similar symptoms to you. I felt better by day 8 but you get to the point where you think you can’t do it anymore. Speak to the Oncology nurses and see if there is anything they can do to help.
They are reducing my remaining sessions to a 90% dose and have also reduced the total number to 4 not 6. I know this isn’t an option for everybody but you may find they can do somehing?
Sending lots of love and hoping the S.E reduce soon
Sarah x

193

After FEC 2 I spent days 6 & 7 in bed - sleeping, sore throat, aching and feeling generally awful. It seems it’s the same again with FEC 3. They’ve told me I may need an extra week to get over this cycle before I start the docataxel. Is anyone else feeling this rough? My arm is still really painful and swollen from the injection of FEC 2 and looks a mess (like me). Tough stuff this going through chemo isnt it? ?

194

Hi Anna and other September starters, and thanks for your good wishes. My blood test results were fine, and infection under control, so today I had my 3rd and final treatment of FEC - 2 days early! This is so that my treatment days can be changed from Thursdays to Tuesdays, the same day as the consultation with the oncologist, meaning that unless there are complications, I will only have to go to the hospital 2 days instead of 3 days from now on. It’s too early to tell how I will react this time round, as it’s all a bit unpredictable. We’ll have to see… good luck and hugs to everyone else wherever you are in your regime. XXX

195

Lisa - sorry to hear you are having a rough time too. I can totally identify with the struggle to get up in the morning because the last couple of days the fatigue has started to catch up with me and I’ve got up later than usual. It takes ages and is such a fandango to get ready in the morning and at night, with all the various creams and other stuff I am putting on my face, body, feet, hands and nails to get them or keep them in good condition, including the anti fungal stuff on my big toenails, the Hydrocortisone for the eczema and the Zovirax for the cold sore! The late breakfasts the last couple of mornings have also affected when I can take the next antibiotic, meaning later lunches and teas, much to my husband’s dismay! But it must be even more difficult having to drag yourself out of bed to work during the treatment. Sometimes I feel a bit guilty about not having to work, when others have no choice. If notthings continue to go reasonably well during this cycle and I feel up to it, I will ask about doing some work at home. There’s no excuse for not doing some work if I am capable, and it will also be something to do to take my mind off the treatment. All the best and hope things will get easier as you recover.

196

Dear all,
So sorry to hear so many people are having a tough time - it’s stressful enough having to cope with what life throws at us let alone the SE to this horrible but necessary treatment regimen.
Dawn - your posts are always interesting and helpful - keep them coming please. I’m with you on the extended routines!

After suffering horrid sickness and vomiting (not able to move my eyeballs was a first for me!) on days 6 and 7 after my first chemo my anti sickness medication (Ondansetron) has been increased to cover me to day 8 and I’ll keep taking the Domperidone up to that day too in the hope that I won’t have the same experience. Second chemo yesterday and I cold-capped again just in case I manage to preserve the 1/5th of hair I had left. I say had, as this morning I gently combed out several small kittens worth of hair (I loved that expression - sorry I can’t remember who said it) and am now left with an overall ancient old lady look of a thin covering plus a couple of bald patches. If it doesn’t drop out I’ll consider the cap again but it doesn’t look hopeful! A friend gave me a lovely scarf that I managed to swirl up into a nice secure shape after finding helpful technique on line. However my vein really protested yesterday and treatment had to be slowed and one time stopped as it was too uncomfortable. So enough - I’m having a PICC line for the next chemo. Anyone any advice about best management for having showers, sleeping comfortably, and doing exercise please??
Best wishes to all, Rosie

197

Thanks Lisa. I think I’ll need to bite the bullet now as I’ve been delaying getting any head wear in the hope of keeping some wearable hair! Looks like I will need sleep caps at least and maybe one turban. I have a nice wig curtesy of the NHS that will get first airing tomorrow and I’ll use scarves in between. Xx

198

Oh no! Can you go somewhere where you can try on and have proper fittin?. Mine makes me feel good when I look in the mirror so I’m hoping it doesn’t make me itch after two hours! It’s a short blond bob with longish side fringe and about the same colour as my original hair. The sort of style I will try when my hair grows back. Hope you find something lovely that makes you feel good too. Hugs xx

199

Dawn I’m glad you were able to have your final treatment. Do you feel as if you’re on the home straight now?

My “official” wig (i.e supplied by the NHS for when I i need to look like a respectable adult) is ready but I won’t be collecting it until next week because of other commitments. I had ordered a couple of fun wigs because why the heck not? They arrived last week and I took them to the hairdresser to be trimmed to suit me. One is a curly auburn bob, very Downton Abbey and the other is long rainbow curls. I wore the rainbow one to uni today and yesterday and got a lot of positive comments- even from perfect strangers! I’d ordered some cotton wig liners from Bohemian Headwear and they made wearing it very comfortable indeed.

I was going to add more but I’ve forgotten what I was going to day!

Good luck everybody with getting through the next few days, wherever you are in your treatment. Fingers crossed you all feel fit and well xxx

200

Well after cold capping for cycle 1 on 22 Sept, I can confirm it’s failed :frowning:

On day 14-16, I felt like I had tiny little pins and needles in my head. On day 18, it was like combing out clumps of hair, and today on day 19, I literally combed it all out.

Thankfully though, I received the call yesterday to say that my wig had arrived so I picked it up today. The salon was wonderful and it was time to bite the bullet and shave off what little was left. As my own hair is actually short, I was already properly fitted for my wig. It felt odd putting it on for the first time though knowing that I was now bald, but I must say I feel a sense of relief. Relief that I look ok, relief that I can now shower properly and not have another ‘oh christ’ moment as I see hair swirling about the bath, and relief that I don’t need to feel that awful cold cap again.

I thought this moment would be the hardest but it turns out it’s not so bad. I know it’ll grow back, and with a good wig I now actually feel more confident than I have been in the previous week :slight_smile: