Anyone due to start their chemo July 2014

Going through breast cancer treatment Chemotherapy monthly threads
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Hi All

I just popping in from the June thread

Well today I am 48yrs old and apart from contenplating my next year I am starting a new regime. I had one cycle of FEC on 7 th ofJune  which went really well I kept thinking how lucky I had been.

I attended my pre chemo app and had bloods done,went in to see oncologist who just sat me down and said she was not happy and wanted to change my chemo, I was really shocked but she informed me my tumour should have shrunk and she felf it had not reponded, well to say the least, I was ok, I can handle that, then I asked if I would be having 6 cycles of the new chemo DC  and her response was she did not want to go that round that corner we would see how the DC went 

Then to top it off I got a call saying my bloods were to low and I could not have my chemo and it was prosponed for a week and now gotta inject myself on Tuesday

Could only find the combination on the macmillian web site and C part of the treatment comes with a

health warning ,so here I am on my 49th birthday wondering how tomorrow will be and will I be around for my 49th ,sorry about the negative thoughts but has anyone else had this happen to them

 

 

 

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Hi there just to say good luck on wed you.will be fine.i am due my 3rd fec on fri.it was after my 1st I got an infection and was in hosp for a week they were great my white blood count was to low.it was in hosp my hair started to fall out after 12 days had it shaved now.my 2 nd fec I was unwell on my 8 day but you get over it.was sleepin a lot but great now ready for num 3.just rest all you can and drink plenty.the nurses are great and put you at ease.so just think the chemo will rid you of the gremlin you will be fine good luck wed sheila

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Hi everyone, wanted to ask if anyone has had mouth problems during chemo. Part of my gum is sore and inflamed, the pain is unbearable. I have seen a dentist and thankfully no infection. Paracetamol and brufen are just taking the edge off the pain, but I’ve had to resort to strong paracetamol and codine to enable me to eat sleep etc. I have been given an anaesthetic spray and I use a strong mouthwash too, I just think I need to wait until my white cell count is up before this eases, I had first chemo two weeks ago so I was expecting a dip this week.

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Cath C,

 

Dad’s feeling a bit better now thanks - he can get around easier today so left our house early to go do his ironing!  I did say I could find him a duster if he was bored, but he said he had enough to do at his - was worth a try anyway lol.  Tomorrow is a busy day as dad has his oncologist appointment, then I have my heart scan and then my oncologist review - day trip to the hospital, what fun xx

 

WP23,

 

Hope the hairdresser’s went ok.  I’d been planniing to get mine clipped right down when the time came and, sure enough, it happened on day 14 as warned!  It wa so weird - in the morning I ran my hands through my hair and it was absolutely fine so I went through the ‘oh, my hair must be quite strong - will probably last a bit longer’ scenario then after tea when I did the same - whoa!! handfuls of hairs came out.  I let my daughters have a hack at it first then borrowed some clippers from a neighbour who kindly offered to take it down to a number 4 for me.  Must say, it doesn’t look bad at all and oh, the convenience - washed and dried in two minutes today.  Just wish it was a number 4 on the way back instead of on the way out but hopefully, before we know it, we’ll soon be there.

 

Hope everyone else is doing ok and good luck to any due to start treatment soon,

 

hugs & good wishes to all,

 

JuSt

xx 

85

Evening all. Can’t help with cold cap questions but I did find this on another thread originally copied by biddleybee if memory serves. Thought it might be useful to us? I just didn’t want any of you to miss any of the useful suggestions is all. I’m not much use at anything except finding and making lists!

  • Cordsyl daily for x 3 and Cordsyl normal for 1 (dentist recommended)
  • ultra soft bristle brush/baby toothpaste
  • aloe vera based toothpaste, Beverley Hills gum strengthening toothpaste.
    For the mouth:
  • Gelclair, salt water wash, Oraldene, tonic water, Difflam mouthwash
  • aloe dent lip balm with lysine (good for coldsores also)
    Bad taste: - pineapple (fresh/chunks/drinks/lollies) - haribo (not tangtastic) - celery, mints, fresh fruit, pear drops, cola cubes, sherbert lemons.
    Water tasting odd: - flavoured/sparkling water, lemon squash
    Nausea:
  • Ginger (beer, biscuits, sweets, fresh)
  • smaller, regular meals
  • V8 vegetable juice
  • Manuka honey with hot water and peppermint oil
  • Slippery elm powder mixed into natural yoghurt
  • Banana for early morning with the anti-sickness tablet
  • Flavoured/green tea if can’t face milk or dairy products in tea.
  • Lite bites suggestions – cream cheese and bread sticks
  • Nothing spicey
  • Flat lemonade
  • Plain biscuits
  • Banana/peanut butter sandwiches
  • Travel bands/anti sickness bands (Poundland cheaper than Boots).
    General Wellbeing/During Chemo:
  • Carry your card and thermometer with you all the time and keep bag packed
  • Chemo Caddy – see below
  • Pin up emergency numbers where everyone can see them – who to contact and when
  • Check with your consultant who to phone at eves and weekends
  • Store emergency numbers in your phone
  • Digital thermometer if not given one by hospital (Poundland cheaper than Boots)
    – take temperature under armpit as more accurate
  • Lifemel honey to boost white blood cells
  • Drink LOTS of fluid before and after chemo - Lucozade for energy - Light meal before chemo
  • If having CMF and nose issues when Chemo being administered then sweets or lolly (mini callipo) to suck during (small cool bag also recommended to keep lollies frozen)
  • Bath pillow (helps prevent cold bald head on cold bath)
  • Don’t take 2nd steroid dose after 2pm (awake/energised at wrong times)
  • Eat fruit when you need to eat whilst/before taking tablets
  • Avoid alcohol for 2/3 days after chemo
  • Keep out of direct sunlight
  • Pregnancy type diet to avoid risk of infection – ie no un-pasturised dairy products, wash veggies, meat properly cooked
  • Accept help wherever offered!
  • Prepare/buy nice food in advance for bad days
  • Smash! When you can’t eat but must and mouth is sore! (Needs ketchup though)
    Sleep when you can - Fresh air - Exercise - Laughter - Ask for help if really sick! Docs etc for additional drugs! - Steripen to sterilise water of nasties (works through UV and no nasty chemicals and easy to use but £90)
  • Runny nose through loss of nose hair – tissues!
  • V-pillow
  • Check and see if GP can refer you to local leisure centre for cheaper use of fitness suite and swimming pool.
  • Constipation - breakfast of high fibre cereal/fruit smoothie/prune juice - “Go Cake” – see below for recipe.
    Sore Eyes
  • Boots hayfever relief drops
  • Cooling/chill eye mask
    Headaches - gel pads (stick on kind used for infants/migraine)
    Dry skin/rashes/spots from Taxol - gentle moisturiser for hands and feet - drink lots of juice and water but leave spots on face alone as skin sensitive.
    Hairloss/head coverings
  • buffs from buffwear
  • baseball cap
  • headcovers website
    – sleep caps, scarves, bangs, eyebrows, eyelashes, wigs etc
  • don’t wash it too often, use baby shampoo
  • Browzings by Benefit – good eyebrow make up - Boots
    CHEMO BAG AND CHEMO CADDY
    Chemo bag
    (A bum bag has been suggested as keeps both hands free and no restrictions on your shoulders and particularly snugpak response pack (online) as “tested in war, never beaten” and big enough to take a tool kit/chemo caddy or chemo bag).
    Keep a bag packed in case of emergency hospital visit and to take on chemo days. Pyjamas, warm socks, clean knickers, wash bag with spare toothpaste and brush, face wipes, mirror, tissues, bag of pineapple pieces, anti bacterial hand gel, book.
    Chemo Caddy
    A basket with a handle (previously from delivery of pot plants) with everything needed in it so that you can have it by the bed upstairs or carry it down to crash in front of TV.
  • Edibles – ginger bics, minty chewing gum, root ginger to nibble.
  • Treats – nice hand cream, chocolate, octopus shaped back massager, nail cream, buffer.
  • Essentials – tissues, glasses, lipsalve, bottle of water, straw (in case can’t lift head from pillow), little bell (to summon family to fetch/make tea)
    “GO CAKE"
    4oz All Bran, 5oz sugar, 10oz mixed dried fruit (basically whatever is in the cupboard – use a nice mixture) – apricots, sultanas, cranberries etc, lots of chopped prunes for extra “GO”. ½ pint of milk 4 oz self raising flour. Put All Bran, sugar and fruit into a bowl, mix, add milk and allow to stand for at least half an hour (while you recover from the physical effort so far). Sieve in the flour, mix well and pour into well greased 2lb loaf tin. Bake in moderate oven (180 degree c) for about an hour, until a knife comes out dry. Cover with foil after 30 mins if its browning too much. Turn out of tin and cool. Serve in thin slices with butter as thick as you like it!
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And best of luck/ good wishes to anyone starting, having or experiencing effects from chemo this week xx

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Marleyann wrote:
Due to see consultant for chemo today would appreciate thoughts on cool cap thanks

 

…

Hi Marleyann

Sorry didn’t reply earlier .Was asleep  and   now night owling it.

My cold cap experience went well. I started on my first cycle tc-h on weds 9th July. As expected the brain freeze lasted 5 minutes which was distracted by the warm tea I kept in my mouth. By 15 mins I could not really feel much. It was very bearable for me. I am keeping everything crossed that it works. :slight_smile: because it prolongs the day’s treatment but hoping it will be well worth it. Will be able to share on day 14-21. Will share. I have my wig voucher on standby just in case. 

 

 

88

Hi All

Must try and catch up during the day instead :-).  

 

Hope everyone feels better today. I am on  Day 6  (1st cycle) although that day was my emotional ‘melt down’ day I pulled through and feel so much better now. My main problem is indigestion with painful bloated tummy and flatulence. I rang the hosp as I found it distressing …not too helpful.

Anyway I went for a long walk, ate more regularly and mobilized like mad. It appeared to work but as evening approached it began again. Guess what? I found a solution … dancing. I danced for about an hour and after passing enough wind to blow up an air balloon  I sat down to dinner. Wow. the joy!!

Seriously it’s the worse mega indigestion I have ever experienced. :slight_smile:

 

I am definitely going to mobilise on a daily basis to reduce this SE. Personally I think it’s the  filigrastim injection that’s causing it. Otherwise It feel great.

89

Hi CathC,

 

happy to report very good start of the week, energy levels pretty normal (how bizzarre, considering Thursday and Friday I was crawling). I had seen the hospital on Monday morning and they ultrasound my PICC line arm and no clot, but it seems my veins are so small that the tube is rubbing onto the vein and makes it inflamed and painful. I have to constantly have a hot pack on my arm, just to keep the veins dilated. It seems to work so far, not much I can do, I prefer this to having a canula and veins damaged by chemo for the rest of my life (i’m 41 btw). My hubby found a pack in Boots which is quite light and I can keep it on my arm whilst I’m at work (desk) and at home, the old hot water bottle.

 

Wig ordered, now waiting for it to be fitted to my head size and it may be a little late, I have another wig which I have ordered online and it is a little bulky for my head, but it may have to do until the good one arrives, hoping no hair loss beforehand.

 

I hope you are coping well. What was your dx? Are you also going to work through your treatment?

 

Flossiexx 

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Hi CathC and Moggs33, eventful day yesterday! Went in at 11.30 came out at 5.30. Power port site was too swollen and bruised, took 3 tries by 3 different people before we got a good result then the dr hadn’t prescribed the Emend so had to get that sorted out which added more delays. Cold cap ended up being on nearly the whole time too, during the 2 hour after chemo time the temp started going up so now worrying that it won’t work!! Have an appointment with the wig lady on the 24th just in case.
Not impressed with SEs either, not as bad as some I’ve read of on this site but bad enough, I was really hoping after reading the July minimal SE brigade that I would become one of their number, especially having the Emend too! X
WP23 my chemo nurse mentioned the same, said to drink loads and use cystitis sachets if that isn’t enough. X

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1st fec today, so far just feeling drowsy, hope everyone else is okay xxxx

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Hi Ladies

I really wanted to come online earlier but couldn’t lift my head up for too long!!  It’s Day 8 and it’s been so horrible for me today. Appetite decreased, tastes buds still selective and flu like symptoms. My temp spiked  to 37.9 deg C. so I took an I bruprofen, went to sleep and have just woke up feeling better now.

I so wanted to go for a walk today and such a lovely one.

Anyway if I feel that way again I shall be ringing the Emergency line but I think it’s a small blip and I will be fine tomorrow.

 

Wendy I am feeling more normal now that we had the same windy symptoms :slight_smile: . Like you sense of humour x. Maybe it’s the TC combination as you said. My chemo brain’s not working. Did we have the same DX . grade 3, stage 1, 4mm IDC, ER and HER2 positive? Remind me please.   

 

Pennyfarthing .Sorry to hear about your stressful sesson. Hope you are feeling well now.

 

Hbunny,  sorry to hear about your sore  vein. Hope it’s improving quickly

 

Wenylois,Thanks for website address I might need it but still keeping fingers crossed that  the cold cap works :slight_smile:

 

Flossie Brillant that you are feeling so well now. Keep it up girl! It’s so much easier to cope when you feel well, but make sure you rest and take things easy.

 

Definitely agree with you sodastream re taking things easy. I am going to rethink working during chmo as I don’t have too, but i love my job as a midwife and really want to keep going… 

 

Hi Cath C…you are 2 days ahead of me. Great that you are feeling so well. Funny re the library card senario, good thing it didn’t get stuck it the machine. LOL. Bet that chemo brain will improve. My windiness has gone now so I’m happy about that. Will definitely  be reviewing my meds next cycle. I never had sickness or nausea and didn’t take all the meds prophylactically  as they affected me more.

 

Pookieharton, Glad everything went well with first cycle

 

Hello to everyone else I missed. Hope all well. 

 

 

 

 

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Hi all
Haven’t been on here for a while, had first fec on 4th July but unfortunately the SE hit me for six. Got to the hospital only to find 2 hr waiting time and as I was trying cold cap ended up being there for about 6 hrs. Started being sick almost as soon as I got home! However, after a bad start I felt better after couple of days, esp after being prescribed lansoprozle for my windy acidic stomach!!
Feeling good now although hardest thing is only being able to wash hair couple of times a week due to cold cap, it gets so greasy that I’ve taken to wearing my wig when going out just to cover my awful hair. Day 12 and haven’t lost any yet but we will see over the next week.
Good luck to anyone starting in next few days or to those due for their next dose. I keep reminding myself that by time the kids go back to school I should be more than half way through.

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Hi Karen2609

Good to hear that you are coming through the 1st cycle on Day 12. Lansoprozle seems to be exactly what I should have been given also but that didn’t happen. 

My cold cap did slow the process down also. Together with the Herceptin and chemo it took 8hrs 

Please Keep me informed re hair, as i was told the chance of keeping my hair was 70%. I will just have to wait and see. What % did they give you?

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Hi Ladies thanks for all the good wishes and hope everyone is doing ok today? For anyone coming up to 2nd dose I read on a thread that Manuka Honey can help with building up blood count so rushed out and brought some. However on doing more research when I got home I discovered I should have brought the more expensive 10+ honey rather than the 5.
Hi Sugar 8 - I hope today is a better day for you and that you get to go for that walk. My oncologist said chances of cold cap working were only 30% so I wasn’t going to bother with it, however when I got to hospital the nurses were very encouraging and talked me into trying it, they didn’t give a percentage but said recently they have been having very positive results. Day 13 and still ok so far.
Hi Cath - glad you are feeling ok, I’m really appreciating these good days
Hi Sodastream - were you told you could wash and blow dry your hair everyday ? I’m glad that has worked for you and tempted to try as my hair is awful but I was told not to and am scared of it not working if I don’t follow what I was told to the letter. It is very encouraging that you have kept your hair whilst washing & blow drying so I may succumb…
Hi Wp23 - hope you have a great time in York and that Monday goes well for you

Love to everyone and as my oncologist said yesterday, one down and 16.6% of the way through x

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Hi ladies,

I havnt been on for a while as I am so scared and nervous about starting tomorrow and not been much company for anyone,
Was at the chemo nurse yesterday and felt it was really rushed however she said that they will go through it in more detail tomorrow,
I am just so worried about all the side affects and will I be ok to look after my little boy, can I still drive, how will I cope mentally with the se and the hair loss, I really want to do my best to at least show my kids and family that I am coping so I don’t make them more worried than they already are.

I hope you are all doing ok and suffering minimal se.

Wp23 thank you so much for your support for tomorrow.

And to all the other ladies that have gave me kind words anytime I post.

Good luck to you all.

Joanne xxx

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Hi Jackie, thank you so much for replying,
I am on the same as you fec-t,
I no what you mean about anxiety making ur mind think the worse that’s all I do and have already wasted so many weeks with it, hopefully once I start I will be able to take one day at a time and stop thinking away ahead.
I think I still havnt really admitted to myself that this is happening tomorrow!!
Glad you have done quite well through ur treatment and hope that continues.
The hair is one of my biggest fears and like you don’t think I’ll be able to look at myself and def can’t event think about letting my hubby and kids see me, hopefully as iv read from others I will deal with it better once it starts,
I am a hairdresser and can’t even bring myself to do anyone’s hair.

Thank you again for replying and good luck to you.

Joanne xxx

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Hi everyone

 

Guess what feeling much better on Day 9. :-). I can smile again.

 

CathC My Energy level is 8:10 so that’s great. Will be taking it slowly though. Good to hear you are doing well and I am really pleased for you x x. You’ll be probably be fine next session so don’t panic. Don’t know re weird dreams but is it surprising? I will talk to my nurse next time re Lansoprazole. Wind has dispersed. Hooray 

 

Sodastream… great about the hair. Hope I can follow your example. 

 

Thanks Wendy. I was asking because so many others are on FEC instead, I started to get worried so  surfed the net (not always a good idea) and found sometime re the regimes for HER2 which made me question the professionals but after chatting with them again I was satisfied with their choice. If only I knew how Taxotere cyclophosphamide would have made me feel  I would still be questionning :smileyvery-happy:

I was looking at another stream and found someone with similar SE’s who like me had been given Herceptin alongside the tc chemo. Light bulb moment!! I think it’s our combination and the Herceptin together that made it worse. Day4- Day9 of SE’s. My temp settled but I made sure I stayed the Ibruprofen. Hope that’s ok to do. Enjoy York

 

Thanks for asking Karen2609.  Yes feeling much, much better today but decide to take it slowly so NO more blips. Will have that walk tomorrow for sure. Thanks for sharing your info re the Mannuka Honey. I didn’t buy 10+. so will have to go shopping again!! :smileyhappy: Fingers crossed re your hair.

 

 Good luck to Dellan and Laurelle for your first chemo sessions today. How is is going and hope you are fine.

 

Joanne 76 be strong most of the ladies appear to have got thro’ with lesser SEs so don’t worry. The first session is always the worse. I was so nervous my normal bulging veins diappeared :smileymad: Try and get some sleep It will help 

 

Hi Jackie09. Thanks for taking the time to come to our stream and sharing such lovely well spoken thoughts.It’s so true and so helpful, Made me tear up but what’s new this days. Even Stevie Wonder music brings on the waterworks. Your advice makes a lot of practical sense. Experience is alway the best. 

 

wendylois I am really pleased that you are feeling fine. 

 

hbunny, Pennyfarthing, Flossie, JuSt, Pookieharton, Flossie, and anyone I might have accidently missed. Good luck and soldier on. We shall stay positive and recover from our illness as stronger people. x x

 

Thanks for being so supportive.

 

Sugar8

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Hi Wendy, I started with dizziness, lightheadedness, nausea, lower abdo pain, mucusy sore throat, tiredness, flushes trotting to the loo frequently… For both, huff said! and that’s on Emend , ondesteron, dexamethasone for nausea, sickness. Nasty taste in mouth as well just to add insult to injury! Slightly worried about what will happen when all the anti sickness meds stop tomorrow! There are so many of you on the July thread that are doing so well that I’m feeling a bit despondent! X

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Hi Pennyfarthing
Your SE’s sound pretty much like mine, I too was worried about when the anti sickness meds stopped on day 5, but that was over a week ago and I’ve been fine. GP prescribed lansoprozle for windy, acidic stomach and that really helped. Hot flushes have stopped too. Should have different anti sickness meds next time so hopefully they will work. Hopefully you will feel better soon