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January 2019 chemo starters

LB
Member

Re: January 2019 chemo starters

I’m in a dilemma. It’s my birthday weekend and more friends and family want to pop in and wish me well - I’m now the ‘cousin who’s having chemo ‘ but i’m So worried that any one of them could have a cold brewing. How did any of you cope with people coming to the house? I feel I want to put a notice around my neck saying “NO HUGS” 😊 on the other hand it’s so nice to know they care.
LB
Member

Re: January 2019 chemo starters

B74 hope all goes well 🤗
LB
Member

Re: January 2019 chemo starters

Sparkie2001 hi i’ve just turned the corner after my first FEC - 11days and I felt back to my usual self. I tried to keep a note of the things that I hated to eat - bread and chocolate, strangely, were top of the list of hates 😊 ok now 👍 foods with ‘umami ‘ that’s the stuff with garlic, chilli and get the taste buds going help. Salty crackers for that steroid starving feeling worked well and for the slight nausea when you’re not sure if you need the breakthrough anti sick. Good luck 🤗
B74
Member

Re: January 2019 chemo starters

Hi everyone, I've been catching up on all your posts, those getting through the first few days after chemo and those getting ready for the next one and those still waiting to start. This is a tough business! Sunnydaze & G I'm in a similar place with the hair. My scalp has been prickly and painful for days, I am shedding random hairs everywhere, I know for a fact that if I gave a tug it would just come out by the handful, so I am not touching it at all! As a consequence my hair is unwashed, unbrushed and basically just horrible looking, but I'm completely unable to accept the inevitable. Maybe tomorrow if I'm feeling stronger I'll do something about it.

 

I just got out of hospital today (after pleading with the registrar to please let me go - they wanted to monitor me for another day!) and am a physical and emotional wreck. I barely slept for the 3 nights (constant noise and disruptions all night - I'm not a great sleeper at the best of times). That on top of the IV antibiotics, bad hospital food and lack of exercise have left me feeling 10 times worse than when I went in. Far harder though was seeing all the very sick people on the oncology ward with me and hearing their stories. Obviously the hospital has the worst case scenarios and not all the people who've recovered and been 20+ year survivors, but it really did my head in. I'm hoping a good night's sleep at home will restore some of my positivity. There are only a few days until I have to start fasting for AC#2 on Friday, so I really need all my strength! It's a bugger because I was feeling so good before I went in.

 

Hugs & strength to all of you xx

G
Member

Re: January 2019 chemo starters

Welcome Gocat and Hi Sparkie2001!

We are mostly all in the early stages of chemo so hard to say how things are further down the line here. I do know that each bit of the journey does progress and you do move forward with it even when you can’t imagine ever doing so. I have had a lumpectomy and then needed a mastectomy and now obviously chemo. I have my second EC next Friday so I have spent this cycle trying to work out when my good days are, and there are lots, and the week of hell is a memory, albeit one that I know this time next week will be back but I also now know it will pass. I too have very much had the feeling of wanting to run, especially before the first EC. I am also struggling with not just feeling poorly after it but with what and why I am feeling poorly. I haven’t come to turns with the fact that I am doing this and I am ‘hurting’ me, all for the right reasons, obviously trying to help me! However I am finding it a little internal battle that I can’t get my head round still!

With regards the hair. I have cold capped however my hair today seems to be acting strange. To be fair I have long hair and used to lose quite a lot everyday in my pre chemo world, forever hoovering up round my dressing table! However since the chemo, strangely I hadn’t been losing any, and then today it seems to be shredding a few strands throughout the day...anyway else experienced this pattern? Could this be the start?

Hope people are/have a good nights sleep xx
Member

Re: January 2019 chemo starters

Hello all, thought i’d chip in as I had my first round of FEC on Weds and have been finding this whole chemo business hugely odd. I had what felt like a hideous hangover about 3hrs after treatment which luckily subsided with paracetamol and anti-nause meds. I’m now on day two of the steroids which seem to be helping but making me quite jittery.

As with all things related to this cancer business it’s the mental side of it that’s doing me over at the moment and the fear of what lies ahead in the next few months. The rational part of me knows that this has to happen but the other half of me wants to run away as fast as i can! Does it get any easier the further you get into it please?
Member

Re: January 2019 chemo starters

Thanks for all the lovely messages. First EC went fine, I'm feeling pretty rubbish now though. Headache heavy legs a little dizzy and my tummy gurgling. I haven't eaten much though. Trying not to panic:-/ it's good to hear the hair stories. Xx hugs
LB
Member

Re: January 2019 chemo starters

Hi I’m dreading the hair loss but I got 2 lovely wigs yesterday and I tried one on this morning- I liked it so much I kept it on - my hubby loves it 😊 Another good thing today - day 11 after first chemo- I enjoyed a sandwich 🥪 I had gone completely off bread but today my taste buds have gone back to normal 😊 i’m going to try chocolate too 😊 the small things become very important - when you’re trying not to think too much about the big thing that we’re all going through. I’m getting such a lot of comfort from this forum even when worrying about those of you having a bad time. Hugs to all 🤗
Member

Re: January 2019 chemo starters

Never know which thread to post in lol.  I posted in Dec thread but seems more active here.  I started my chemo 27th dec so probably best to post here

Had 2nd chemo yesterday.  No problems.  Just hate the waiting round when you get there.  Had cold cap but my hair is falling out.  Think I will have to brave the shave soon.  

Got home and felt "bit" naseaus about 8.30pm  This is when the severe nausea started after my first chemo.  The nurse advised me to up my "when needed" medication so tried the Prochloperiazine which had to disolve high between upper lip and gum.  I didnt try this one 1st chemo. And yes it worked.   But I had been trying the fasting for 2 days pre chemo. Didnt fast completely but did cut back on what I normally eat. So maybe that helped too.  

Had my 4 steroids today and yes have slight palpatations.  So think it is the steroids.  Have to take 4 a day for 3 days.  Took them at 6am so hopefully wont disrupt sleep tonight too much.  

G
Member

Re: January 2019 chemo starters

Amazing how strong we can be yet how bloody vunerable and distressed we are at the same time, never imagined such feelings could co-exist, but they do with this. I too am dreading the hair loss, two weeks after first chemo and am just constantly thinking about it and examining it etc massive hugs to you all, and please continue to vent, laugh, cry, support, give comfort and ask for comfort here, think we are doing a grand job for each other xx
Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hi Sunnydaze, sorry to hear the shedding has started in ernest... that is the toughest of days believe me... once you have had the shave and given yourself time to accept the new look you'll feel better.  Once its gone you no longer have that to worry about but be kind to yourself.. its a huge thing to deal with for a lot of people (me included) and it takes time to find your peace with the no hair look.. but it happens.  Its crap its coincided with your daughters birthday, I was having surgery the day my son had his first GCSE, having chemo right through them and had to rock up to this Prom with the wig in situ... actually would have crawled there bald to see it though.   I was also in hopsital the day he got his results, he still passed them though.. bless him.   Just remember.... next year you can celebrate her 16th in style!!

Kip

xx

Member

Re: January 2019 chemo starters

Sunnydaze - just a big hug from me.  I totally get where you are.  My daughter was 15 in November and, due to my recovery from a second stint of surgery a couple of days earlier her birthday was pretty low key which was rubbish and then I had my first FEC just before Christmas so Christmas was pretty subdued too.

 

Well done to you for making a cake though - superstar!  

 

I TOTALLY agree about the hair thing too - I thought I was kind of prepared for it but mine has been shaved off for a couple of days now and I can barely bring myself to look in the mirror when I have nothing covering my head.  I guess it must feel more "normal" (whatever that is?!!) gradually...

 

Big hugs x

LB
Member

Re: January 2019 chemo starters

Sunnydaze, good luck for today 🤗
G
Member

Re: January 2019 chemo starters

Hey sunnydaze, you are obviously a wonderful mum 💗, and everything else will just happen and you will make the best of it because of this, thinking of you today xxx
Member

Re: January 2019 chemo starters

Thanks everyone,
I think I will need it today and appreciate your kind words. It’s a bit of a perfect storm day today. It’s my daughters 15th birthday and I’m putting on a brave face, whilst crying inside. My hair is just literally coming out in handfuls like cotton wool this morning, it’s much more distressing than I ever anticipated😢 I had it shaved last week, a kind of undercut with a lovely floppy fringe,but my husband is going to take me to the barbers this morning for a final shave before chemo. . I actually think it will be easier to deal with when I can wear my wig and feel half human again. In the meantime I am going to bake a quick Victoria sponge for my daughter. Oh this is a hellish journey, I’m glad for this forum, appreciate the sisterhood.We can do this because the alternative is pants!
Sunnydaze xx
Member

Re: January 2019 chemo starters

B74, Glad you're feeling better xx Sunnydaze & Stuck at 14 hope all goes well tomorrow xx
Kip hope you're doing OK xx
Dikat , like you I wounder what will happen to my hair, hope it doesn't come back the colour it is now
Welsh j how's things going with you xx
LB happy birthday for the weekend, what day actually is it on? Xx
G hope your doing OK, big positive hugs to you all
G
Member

Re: January 2019 chemo starters

Evening Ladies, I hope tomorrow goes well and you are looked after wonderfully and the whole process goes smoothly, will be thinking of you. B74, all crossed hoping you will be back home with your ickle ones soon! Xx
Member

Re: January 2019 chemo starters

Good luck stuck at 14 for tomorrow. I have my second Fec tomorrow and feeling a bit anxious now.
B74 hope you get home to your kids and your home comforts very soon. This is hard enough without a hospital stay.
Sunnydaze
B74
Member

Re: January 2019 chemo starters

Thank you G, LB, Sunnydaze, Kip. I’m still in hospital, now on an oncology ward which is much better than Emergency! - I think I got about 1 hour sleep the first night with people coming & going all night long. It’s all incredibly frustrating to me because I’m sure my temp & achy muscles were from a virus (my daughter currently has a mild flu), so really didn’t want the antibiotics - but had to have them because my neutrophils were (are?) so low. But for the last 24 hours I’ve been feeling perfectly healthy & just want to get out of this germ bed and back home to my kids, walks & decent food! Just waiting for a blood test to show my WBCs are ok.

Stuck at 14 - good luck! It’s scary but I know what you mean about wanting to start - and every day of chemo is one day closer to the end.
LB
Member

Re: January 2019 chemo starters

Stuck at 14 good luck for tomorrow 🤗
Member

Re: January 2019 chemo starters

@sunnydaze thank you! I'm starting tomorrow on ec. Scared but sooo relieved to be getting going! Xx
Kip Community Champion
Community Champion

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

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
Member

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
Member

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

Re: January 2019 chemo starters

LB, big hugs, hopefully you'll be sorted soon xx
LB
Member

Re: January 2019 chemo starters

B74 I hope you’re feeling better soon 🤗
G
Member

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

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

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

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

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

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 Community Champion
Community Champion

Re: January 2019 chemo starters

I felt the same Trixie, you will find you feel more in control once things get started.
Member

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

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 Community Champion
Community Champion

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 Community Champion
Community Champion

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

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

Member

Re: January 2019 chemo starters

Hi Kip, this forum is fantastic it's really great to hear from ladies that have been or going through it, it seems like a never ending road of hospital appointments and worrying about results and other pains appearing, how did you find the chemo? on T did you also have the herceptin? administered? how did you manage around friends and family with risks of infection? I can only imagine what you've been thinking and feeling coz my chemo hasn't started yet but I've had lymph node clearance in Dec cancer in one and also had a mastectomy in November chemo after heart scan just waiting for appointment, at least your going to get help to hopefully get your life moving again, big hugs, not sure the age ranges but I'm 50 xx
Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hello TrixieLady, this is where I am up to with my treatment...

I was diagnosed in April 18, grade 2 IDC, had a single masectomy (no recon) and SNB removal, found sentinel node and another one had cells and the third had micromet so had 3 x FEC and 3 x T chemo starting in July and finished on 24 Sept.  Then had ANC, remaining nodes in levels 1 and 2 removed, none had cancer in them phewwww.... started 15 x radiotherapy sessions on 29th November, finished 19th December.  So all active treatment finished now.  Oh and started Tamoxifen for 10 years, started in middle of November.  So far, hot flushes and aches and pains (although the pains could be due to chemo taking time to leave your system)  but needs must so ploughing on.  It seems so surreal when you see how much you go through over those months and you feel you'll never get to the end but you do.  Now I am waiting to see Radiotherapy for sign off and then I think i will getting a mammogram around the 1yr anniversary of diagnosis and then I believe its 6 months and then 1 yr and then ever year for 5 years.. not too sure.  Its a funny feeling when you get to this point... suddenly you are not at the hospital all the time and feel a bit alone.. struggled a bit to be honest but that seems to be the norm.  Suddenly you have to find you life again... I've signed up for a HOPE course at the hospital which is designed to help you move on, how to get to like you body again, how to address your fears etc.  

You ladies are doing really well, its so good you found each other, my monthly chemo forum kept me going (and still does) its only people going through it who can truly understand... 

Big hugs..

Kip

xx

LB2
Member

Re: January 2019 chemo starters

Hi everyone, thought I would chip in with my cold cap experience. I am now in my third week after 1st FEC treatment, 2nd one on Saturday. I did the cold cap, I would describe it as uncomfortable rather than painful. I took paracetemol before as a precaution, also wore a head band to protect forehead a bit. I have been washing my hair every 3rd day with non-paraben shampoo and wearing a hairnet in bed at night to protect the hair - not very attractive. My hair has started to fall out yesterday but not too much yet and mainly from underneath, I guess where the cold cap does not have so much contact. Even with the cap you can lose 30-50% of hair. I washed my hair this morning and expected to see a plug full of hair but there was not too much. So fingers crossed.

 

I also had a Pic line fitted the day before treatment it was a bit painful for me for the first week because of the bruising but has settled down now, don't even notice it.  I have also been very lucky with minimal side effects, make sure you take the steroids they prescribe, my worse symptom was back-pain after the filgrastim injections.

 

Good luck everyone

Member

Re: January 2019 chemo starters

Hi Debs my veins were so painful from chemo, I had a line put in last week I was so scared. It was absolutely painless and the difference it has made.

Love tbird xx
Member

Re: January 2019 chemo starters

Hi Welsh J.  I had my second Taxol yesterday.

 

My side effects in my first week were very minor - a bit of an upset tummy on the Saturday - which was five days later (that could have been the pizza from the night before!) and I've been quite spotty (although I have been slapping on a lot more moisturiser).  My nurse said if I didn't have side effects in the first week, this was likely to continue going forward, apart from the tiredness increasing.

 

I asked about hair loss and when I'll know if cold capping is doing its job and the nurse said I should know by about session 5 or 6.  

 

They asked me if anyone had talked to me about a line (which they haven't) as having the treatment weekly can be quite hard on the veins.  I'm not sure if I'm keen though.

 

Debs x

Member

Re: January 2019 chemo starters

I can recommend the Lactulose as well. I haven't used it personally, but the pharmacist recommended it for my elderly dad-said it was gentle, but effective! x

Member

Re: January 2019 chemo starters

Hi Kip, my own GP had actually said the same about the senna, think so far constipation and not eating or sleep well was my main problem so far I find it really difficult to drink at the best of times , so that's what's on my mind also hated the thought of my hair changing but if I can find away to make it less painful it might be easier to stomach, Kip where are you up to with your treatment? Xx
Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hello all,

Just catching up on your threads to see if I can help at all.   Much talk about the sore head... I had the same, it was really quite painful, stingy, tingly and achy just before it started to shed but once I braved it and shaved it off the pain stopped.  I think its the hair follicles reacting.   Just picture them going to sleep for a while ready to spurt out your new crazy chemo hair once its over.   Mine was shoulder length, virtually straight and mid brown (with a little fleckle of grey at the sides) now is almost white/silver grey with a fleckle of black and wavy and crazy so its an exciting time waiting to see what you will get back!

If you are suffering from constipation I found lactulose helped more than the Sennokot.. my chemo nurse suggested lactulose instead as she said your body can get used to Senna?  Not sure why it wouldn't get used to lactulose either... mystery to me!

 

Kip

xx

B74
Member

Re: January 2019 chemo starters

Welsh j - I have no experience of Taxol (yet) but other people have said the tiredness tends to be cumulative as you go on. I don't think you should experience totally different SEs though. My MO said the taste, digestive issues etc are more with AC / EC, whereas Taxol is more tiredness and body aches.

 

Trixielady - I'm sorry to hear about your blood test results. Were you already dealing with other health issues (thyroid, blood pressure, cholesterol etc) or were these results out of the blue? I have no idea what you could do to fix it & get ready for chemo apart from just trying to be as healthy as possible (diet, exercise etc) - but probably not easy to turn around in a short time. Manuka or Lifemed honey is meant to be good for WBCs.

 

Sunnydaze - I remember someone else describing the sensation (when her hair started to fall out) as like a "migraine of the scalp". So it sounds like the headache thing might not be unusual. Have you done the buzz / shave yet? I'm planning to as soon as it starts because I've heard it makes it hurt less - but no idea if that's true. My head has actually started to feel a bit tender today, so I don't think I have long - aghh!!

 

Hope everyone is doing well. I'm just wishing time would slow down, it's like I'm speeding towards the next infusion!

Member

Re: January 2019 chemo starters

Sunnydaze, sorry I can't help re headaches as I didn't have any. Is it worth giving your chemo unit a ring for advice?

Thank you for your kind words about my observation Smiley Happy A bit dramatic, but I'm trying to think to myself that if I can get through chemo, an observation is nothing! RE on a Friday though...! I was asked today if I could do some extra work next week, so definitely back properly now! I've gone back to a harder job than the one I left-I was covering PPA time before, now I'm job-sharing and teaching an age that I've not had so much experience with! Luckily I taught them a morning a week when they were in Reception and they are a lovely class and I'm enjoying being with them. They made me smile last week-I'd been wearing my wig when I returned, but ditched it over the Christmas holiday. They were very observant that I'd had my hair cut  and one thought it looked a bit of a different colour! At least my wig must have looked realistic!

I was really nervous about returning-I was off for 11mths-I wasn't sure I'd even remember how to take the register! I went back on a Phased Return and that made it easier x

Member

Re: January 2019 chemo starters

Helen, I meant say smells affected me too! I thought I could smell rotten fruit and kept making my daughter's check! And my bin smelt (to me!) like a chemo smell! xx