LB
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Posts: 22
Registered: ‎10-12-2018

Re: January 2019 chemo starters

Stuck at 14 good luck for tomorrow 🤗
Member
Posts: 11
Registered: ‎04-01-2019

Re: January 2019 chemo starters

@sunnydaze thank you! I'm starting tomorrow on ec. Scared but sooo relieved to be getting going! Xx
Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

Hi B74... hope are you bearing up in Casa NHS.   I had exactly the same during my T chemo, a 2 night stay.  I had IV antibiotics and regularly blood tests throughout the day and by day 2 the neuts were 0.6 (still not great) but they said as there were no signs of an infection I could go home.   I actually think I was a more risk of an infection in the horrible little room I was put in than being at home!!   Hang in there... use the time to rest up and get waited on...

Kip

xx

Member
Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Happy a Birthday for the weekend Tbird. I know it’s rotten isn’t it. My 50th will be two days before my 3rd chemo infusion. The joys😢😢😢 I hope you are able to find a date to enjoy your celebration. I am in the process of losing my hair. I braved the shave at the weekend, a half way house. I couldn’t cope with a full Sinead O’Connor, but that won’t be long now I think. I get my second chemo this Friday, so I will have to wait a week or so until I feel a bit better before going the full monty and braving the shave. It is so dehumanising though. My friend (ex breast cancer) said this to me tonight, it’s only hair. “Hair today, gone tomorrow, back again another day😊” We can do this. Xx
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Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Sending you lots of love , strength and healing B74. I hope you get home soon and back on track. Thinking of you
Sunny daze xx
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Posts: 25
Registered: ‎06-10-2018

Re: January 2019 chemo starters

Hi Stuck at 14,
I know how you feel. My surgery was not until 20th November. The hospital really messed up because I was diagnosed on the 9th August!!. My tumour at surgery time had doubled in size from biopsy time!! I was told before surgery that I wouldn’t need chemo... Of course I did and I will never know to this day if this still would have been the case, if they had operated on me in a more timely manner. They did put me on tamoxifen which quelled my nerves at the time, but when I saw the oncologist post surgery she said tamoxifen takes three months to work and that letrazole would have been more effective !!!Could you ask to see if you can start a hormone therapy, if your tumour was hormone responsive?
I started chemo on the 28th December, 5 weeks after surgery, they were originally telling me I would not start chemo until mid January, but at my first meeting with my Onc I told her i would not be leaving the room until I got an earlier date and it worked!!! I told them I was really unhappy about the delay in surgery and how I was always palmed off. I was not going to tolerate a delay in chemo too. Luckily my wound had healed, I just had a dry scab on my tummy ((I had a diep) I will say howeve, that chemo has definitely slowed down further wound healing and probably reversed the healing process by about 3 weeks, in that the scab still is there and the wounds were a lovely pink but became a darker red again once chemo started, However, this has all been liveable, if slightly annoying.
I can really understand your upset and fear, because I have been there, especially if the NICE guide lines for chemo are 31 days. The good thing is your tumour has gone😊😊😊It sounds like it’s just belt and braces now. If are feeling upeasy can you go back to your Onc and stamp your feet a bit for better explanations and either push for appropriate drugs or a quicker date? I know this is not easy at all. What would the implications of slower wound healing be against starting chemo more quickly? It’s important we get answers. We are fighting for our own health and well being it’s so important. I regrettably paid a price for a delay in surgery and I was not going to pay that price again re; chemo. I hope you get full answers with solid justifications for their decisions. Good luck. Sending you loads of strength and empowerment.
Sunny daze xx
Member
Posts: 59
Registered: ‎16-10-2018

Re: January 2019 chemo starters

LB, big hugs, hopefully you'll be sorted soon xx
LB
Member
Posts: 22
Registered: ‎10-12-2018

Re: January 2019 chemo starters

B74 I hope you’re feeling better soon 🤗
G
Member
Posts: 24
Registered: ‎09-10-2018

Re: January 2019 chemo starters

Hi B74, just wanted to give you a big virtual hug. Hope they sort you out very quickly and you are home before you know it G
B74
Member
Posts: 37
Registered: ‎06-12-2018

Re: January 2019 chemo starters

I know what the chemo nurses/doctors are saying about not worrying about diet, because we’re going through enough already & don’t need another stress - it can also be difficult with all the taste changes to find anything that appeals. However, I look at it slightly differently, in that my body is already being subjected to the most toxic regime imaginable, so I should try not to load it even more (esp the liver which has to metabolise AC) by eating crap. So simple foods, fruit, vegies, a bit of protein etc are going to be easier on my body than heavily, fried, oily, processed food. It’s an aim rather than a rule though - I’m certainly not perfect.

The latest for me is that I’m now in hospital with neutropenia!! I knew it was a risk with AC but somehow didn’t believe.it would happen to me. Started getting achy muscles etc then developed a slight temp (just over 38) so according to the rulebook had to come to Emergency. My neutrophils are 0.1, I’ve had IV antibiotics as a precaution (though I actually think I have a virus) & am waiting to be seen by the oncology team.
LB
Member
Posts: 22
Registered: ‎10-12-2018

Re: January 2019 chemo starters

Thankyou all for sharing your feelings and tips. I’m day 9 and have definitely turned the corner today. I think I was lucky and didn’t have much nausea - when I do I just take the ant sick pills. My worste fears were getting constipated - that has been awful - again that sorted itself today. My breast cancer oncology nurse is going to get something stronger for my next round. I’m sad that I can’t stand chocolate - i’m A real chocoholic. But that’s a small price to pay. I’ve found very salty foods appeal most. Ice lollies are very soothing to the yucky mouth and orange juice cuts through well. I get my wig tomorrow - I feel very upset about it but I take heart from all you ladies who have coped so well. It’s my birthday at the weekend and going by some of your reports it looks like my birthday present will be braving the shave. Good luck and hugs to all of us going through this 🤗
Member
Posts: 59
Registered: ‎16-10-2018

Re: January 2019 chemo starters

Hi Stuck at 14, I was feeling the same starting to get stressed about it because of what I'd read, I'd had mine on 13th November & 13 Dec and so I aaked the Oncologist the dreaded question about the 30 day & 60 days! his reply was a bit shady but said you have to heal and can't start until your healed and for me he said should be three weeks from this week coz also needed scan date but he said he could not do my predict due to the PC, its awful having to wait but we have to put our trust in the doctors xx
Member
Posts: 11
Registered: ‎04-01-2019

Re: January 2019 chemo starters

Needing some encouraging words tonight. My op was 7th November and I haven't started chemo yet. Onc said as long as I start before 7th Feb I'll be fine but I'm finding it very hard to believe. I just have this tiny bit of my wound that has a soluble stitch poking out now and won't close up. Has anyone had this? @Dikat I'm struggling with seeing cancer everywhere- like today I threw away expensive make up and a Yankee candle:-( trixie- me too! Just want to know that any risk is getting dealt with. I haven't started hormone stuff either so I'm very scared.

Thank you kip. Xxx
Member
Posts: 4
Registered: ‎07-01-2019

Re: January 2019 chemo starters

Hi debs, thanks for your message, great to know your side effects have not been too bad. I did have some nausea and aching joints for 2 days. Both relieved with paracetamol and the anti nausea meds. Also some diarrhoea 3 days post chemo. I kept a journal to see if this week follows the same pattern. The nausea is much the same but manageable. I have a picc line and is much easier than stressing they won't find a vein as mine are terrible. It's ok , I attend hospital one day for bloods and line redressing then chemo the next.

Hope you have a good week xx

Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

I felt the same Trixie, you will find you feel more in control once things get started.
Member
Posts: 59
Registered: ‎16-10-2018

Re: January 2019 chemo starters

Kip thank you, you explained that lovely found it really informative, just received my heart scan for Wednesday, its such a strange feeling that probably only you ladies will truly understand but I can't wait to get started, because every ache & pain sets my mind on the first seat of the biggest rollcoater xx
Member
Posts: 67
Registered: ‎26-12-2018

Re: January 2019 chemo starters

I'm 50 in July, so all quite similar. I love your grey crop Kit, really brings out your eyes. I've always had my hair coloured but its it's pretty much full grey so that's going to be interesting for me too when it grows back x

Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

Meant to add DiKat... my chemo nurses always told me not to worry about the diet during chemo... you need to eat what you can when you can... its not a time to worry about that.   If you are struggling to keep weight on, then fill up when you can with what you can!

Kip
Member
Posts: 914
Registered: ‎27-04-2018

Re: January 2019 chemo starters

Hi,

TrixieLady:  I'm 48 so not far behind you.   To be quote honest I think I was fairly lucky with the chemo.  The FEC part I used to find I felt a bit sickly (almost pregnancy like) for about 4-5 days and then had the loss of taste and sore tongue but this used to sort itself by about day 8-9.  The tiredness builds up but I don't think I was too bad, only remember 1 or 2 days where I had a sleep during the day.  BUT I am very luck in that I work part timea and from home and was able to fall out of bed in PJs and sit at a desk for a few hours, my work is only centered around answering phones if they ring and a bit of typing so somedays I laid on the sofa and read a book inbetween or pottered around.   The hair loss was a big big milestone for me.  I had told myself I wouldn't let it bother me "Its only hair".. but when on day 12 of the first chemo it started to go.. my resolve followed suit.  By Day 15 I had to have the shave.. I will never ever forget that day, in fact I feel tears just thinking about it...a friend sat and held my hand and my son watched as they shaved the lot.   I couldn't bear to see myself for a few days but I had a nice wig which everyone said looked fab and used that and went around the house bald for most of the summer as it was so hot.   It was hard to make people understand that even though I had lost a boob, losing my hair was harder.  I felt I had gone from being a healthy person to looking like the chemo patient.   Having said all that, after a couple of weeks I did move forward and accepted it.. never like it particularly.. but accepted it and wow it saved time in the shower.  

The T Part of chemo was a differnet kettle of fish.   I didn't have herceptin, just docetaxol and I was dreading it. I had read about it, it was going to be awful etc etc and I was so scared.   But it was anymore awful... just different I guess.  The SEs I found didn't start for a few days, the worst being the horrible mouth, T seems to affect that more I think.  I got oral thrush during the 1st cycle of T and mouth ulcers but the hospital sorted me out and gave me medication for the next 2 cycles which helped it from getting too bad.  The loss of taste was worse, lasted longer.  I did have a stay in hopsital during cycle 4 (first T) when my temperature was high, 2 nights in a single room wasn't pleasant but they looked after me and made sure I didn't get an infection.  The next time round I was fine, during the last cycle I had the self administered injections to ensure white bloods were high enough for the last bout.  Eyelashes and eyebrows going was hard too, they didn't go until chemo 5 but they are back now.  My hair was growing again during chemo 5 (apparently thats quite common if you  have FEC first and then T).   Now its full coverage.   Oh my thumb got numb during T too, look out for numb fingers and toes and report it as they can reduce the chemo to prevent neuropathy.  After chemo finished my thumb came back to normal but the nails are quite ugly, very short and have ridges, par for the course I'm afraid but they are growing too.  As they always say, everyone reacts differently to all of this and its best to wait and see and just deal with it as it happens.  Don't be hard on yourself if you need to rest, ask for help it you need to (my mum used to come over once a week and clean for me so I didn't need to worry even though I could have done it).  Hope that helps.

DiKat - after treatment ends?  Well I have read everything going about what I should eat, what I should do etc etc.. the conflicting reports are a nightmare.   I am taking magnesium and zinc for my joint aches (chemo or Tamoxifen not sure which is causing it) but checked that with teh Onc nurse first.   As for eating, I wasn't sure if I should be avoiding dairy (many posts suggeste that) but I asked at the hospital and they said no, just eat a balanced healthy diet... don't worry if you drink a bit, keep within the guidelines and just try to maintain a healthy weight and do some exercise.  Its a minefield of information and quite overwhelming but I was asked if I wanted to see a dietician for some advice and although I haven't yet I may ask.   Its hard to move forward when you wonder what you should be doing for the best but I think just be sensible and try to eat well, I still eat dairy, meat, drink alcohol and eat chocoloateSmiley Wink

I know this is a bit further down the line for you guys still but worth a read:

"After the Treatment Finishes - Then What? by Dr Peter Harvey... you can find this on line and it hits the nail on the head!  Ive just printed it off to show my hubby, gives him an insight into how this feels to.

Keep well

Kip

xx

Member
Posts: 67
Registered: ‎26-12-2018

Re: January 2019 chemo starters

Hi Kip 'm a December starter so post on that forum. If you've seen any of my posts you'll know I'm struggling big time with the chemo. It's really useful hearing your journey and bet it must be really strange to no longer have all these appointments. I'm struggling to keep my weight on so not adopting the most healthy of lifestyles at the moment. Im interested to know how you feel about lifestyle once you've finished treatments Kip. Does it send people into a blind panic about doing only the right?? No alcohol, parabens only wholegrains wholefoods etc. etc. I'd be interested to know what anyone else thinks too. I've read the lifeafterlola blog and found that interesting. Am I going to be a nervous wreck about anything that I eat, drink, use for ever! X