Anyone starting chemo in July 2015?

[Manicmum89]

You should joyce11 make the most of it xx

[joyce11]

Just found out my chemo for tomorrow is cancelled due toa slightly low wbc and the antibiotics I am on. Just what I needed spent all day getting my mind sorted - what a blow - now it drags on. Might go away for a few days as a distraction!!

[Manicmum89]

Mazzi I hope they get you sorted x

Think the worse bit about losing your hair is you can't pretend it's not really happening any more and your change of appearance is so obvious to others.

Spent yesterday feeling shattered, but think I was just down about hair. Went for a long walk with my sister, which made me feel better.
Tomorrow I'm seeing genetics, then bloods. Thursday is my second appointment to get my port down. Not looking forward to that, especially as my arm is still covered in bruises from last week. Friday is my second FEC session.
Keep well folks x

[Mazzi]

Hi everyone, well after a bit of a fiasco with the prescription from A&E I finally got my Tramadol and fingers crossed the bone pain is easing, unfortunately I do have a nasty rash all over my neck and like some of you I do feel bloated and suffering indigestion. I'm trying to drink plenty but sometimes feel like I'm drowning also food has become such a bore as there is no enjoyment in eating. Back to Oncology tomorrow for PICC flush as it's been left in a bit of a mess from A&E and hopefully they can sort out all the issues. It's reassuring though to hear we all seem to have very similar problems with treatment, haven't had any hair loss yet but sure it will start after the next dose, I to am not sure about my wig, bit darker than my natural colour so ordered a cheaper blonde one just in case, sleep well all x

[rachelr]

Hi Josie, I saw your post and thought you sounded like me when I was having chemo. I actually finished my FEC-T over a year ago and also really struggled with the lack of sleep. As it was caused by the steroids my GP was happy to prescribe sleeping pills (temazepam ) and they were a godsend - I got 20mg pills which are double the usual strength but they were fantastic as I could get a decent sleep every night  even after lots of steroids - and everything is so much more bearable after a few hours kip. I was careful  though as I know you can become reliant on them so I only took them for 7 days after each chemo. So it is definitely worth seeing your doctor about it as they can help you. 

And for the cold cap  - try to bear with it. It worked for me. My hair really thinned, especially on the crown but it was still there! My tips would be to hold on to the roots when you brush it (every hair is precious and you don't want to pull even one hair out !) and stock up on Batiste dry shampoo -it was my best friend!  And the real  bonus is after chemo finishes as the new hair seems to grow very quickly, so 9 months post chemo my hair looked thick and normal  (albeit with chemo curl so I resemble a poodle!)

Sending hugs to all you July girls

Rachel 

[Nikki49]

Hi guys hope you don't mind me poking my nose in but I saw my name mentioned 😊
FEC-T or T-FEC are the same drugs but given in a different order (not a clue why or if it makes any difference) basicly it's 3 cycles of FEC & 3 cycles of T aka docetaxol.
FEC makes you feel sick
T you lose your taste buds (for me everything tasted of salty soap😷) and on about day 4 to 7 you feel like you've been beaten up with a baseball bat.
Your secret weapon is water, drink loads of it around 2 to 3 litres the day before, the day of and the day after chemo.

Take the anti emetics they give you - in fact take everything they give you, now is not
time to brave it out!

For the T as some of you are aware you take the steroid the day before, the day of and the day after chemo - with the steroid tale you carry on taking them for a few more days reducing the dose each day - for me it worked like a miracle cure.
I had my last dose Christmas Eve 2013 - I have almost lost the 3 stone in weight that I gained during treatment, I have a full head of hair which is now highlighted as it came back a bit salt & pepper, thin and curly so that I resemble a mop head each morning & have to wash it daily but I'm not complaining as the slap head look did nothing for me lol.

I have now had a reconstruction to the mx side & reduction to the other to match and best of all I've just had my 2nd annual mammo all clear 😃

It's rubbish for you now but it'll be over before you know it.

Take care x

[hopefulholly]

Hi everyone, not been on here for few days but sorry to see how many of you are struggling.

I had my second FEC on Friday but took 3 hrs instead of 2 cos of my veins so now I'm welcoming the PICC line on Wednesday, not dreading it!  

Ditto with hair loss but I feel much better about scarves now. I was about to order expensive scarves but rmembered my extensive collection of scarves, went on line to find tying instructions and spent a comical hour learning how to tie them, with funky results! Saved me a fortune, just need to buy couple of cheap skull caps for the scarves to fix to.

In the process, I tried on a 'fashionable' turban but my boys said I looked like I should be on my knees scrubbing a half-moon on the doorstep as some of the older women in my village still do. To top it all, I use 24 hr lip stain but, probably due to the treatment, most of it comes off apart from the middle of my top lip, I honestly looked like Hilda Ogden (for younger readers, she was a famous character in Coronation St.) ! It gave us all a good laugh and reminded me how important it is to keep a sense of humour, not always possible, but a good belly laugh is a great tonic. Take care and best wishes everyone.

[Em1986]

Hi all, hope everyone's doing ok and sending big hugs to those not feeling well.

I thought everything was going well not too many side effects then Friday got a sore throat! Felt pretty terrible Saturday with throat and achy legs so phoned chemo ward who suggested I see a GP so called 111 and they made an appt at a&e for me to see urgent GP. They saw no signs of infection and temperature was fine! Hasn't gone away and got a phone call back from my chemo ward checking up on me and they said that I should have bloods taken at the very least and possibly antibiotics so back to my own GP I go tomorrow! Just hoping this goes soon as I don't want to have my next chemo delayed which is next Friday so frustrating!! Xx

[joyce11]

Not offended Josie11 it made me smile when i read your message. Sleep doesseem to be an issue even the demon alcohol doesn't seem to help but i keep trying it on the days when not taking the steroids of course.

[Josie11]

Hi guys, I'm so sorry about your hair and how we are all feeling . It's hard to keep the eyes on the reason and hoped for end result. I'm still so sore today and have had to give myself a huge shake - which has helped in the end as I am coping better.
Please don't be offended , Joyce, but I do now have a image of someone dancing with the Hoover attachment as their hair floats from them to it and it did give me a much needed smile. Did anyone see the Facebook video of the dad sorting his daughters long hair into a ponytail using the Hoover?
I phoned the BCC helpline this morning just to speak to someone as I didn't want to bother my family or GP and it really helped just to tell someone and lady was lovely. Lack of sleep is really kicking in for me and she said that many women get some help with that just for a few days. I've decided to see how tonight goes and phone tomorrow if I'm still only getting a couple of 2 hour sleeps. Even making that decision makes me feel a wee bit more in control.
Take care everyone and be kind to yourselves, xxx

[joyce11]

Hi Manicmum

Unfortunately I don't like my wig even though as you say it will be perfectly styled so have decided to bite the bullet and gond look at another place tomorrow so hopefully if I can get one i like i won't feel so bad about the hair. Felt like puting the hoover on it earlier tose what was left -might start a trend!!

Joyce

[Manicmum89]

That's it joyce11 just got to keep going! Think I've lost about 50% of my hair in the last few days.
Just got to keep positive and at least my wig will always be perfectly styled! X

[joyce11]

Sorry to hear about everybodys problems - we just have to try to keep going. My shower this morning with the weekly hair wash was like a horror story with hair everywhere and couldn't wash it off!! Still going with coldcap on Wednesday but only if I have any hair left, on antibiotics due to insect bites and omeprazole due to severe indigsetion and heartburn. Can only get better.

[Manicmum89]

Mazzi, sorry to hear of your hospital visit. Hope your feeling better x

[Mazzi]

Hi Kobeobe, I also have boys, 16 & 19. I've found that it's best to let them sort it out in their own heads, when they want to talk or ask questions they will come to you, that way your not overloading them with information

[Mazzi]

Hi All, Well eventful day today in A&E. Felt quite rough this morning so contacted Oncology and advised me to go to hospital for blood test. Arrived 7 am feeling rough with high heart rate. After blood tests, chest Xray, fluids and antibiotics I was ok to come home this evening. Am now on Tramadol for 5 days, back to Oncology for PICC line flush Tuesday so will review meds then. Moral of story drink plenty of water and take strongest painkillers offered! 🙂

[Kobeobe7]

Mazzi - I've just seen a post recommending some medication for pain, it's steroids called 'steroid tale'. 'Nikki49' posted that she had horrendous pain and her onc prescribed it and she found it really worked so might be worth asking for. Xx

[Annapanda]

Morning xx
I had my first FEC a week tomorrow (mon)
All went ok had the cold cap too... Was sick later that night.. Just needed sleep in the mornings for a few days , But Saturday morning I woke up and felt so down! Cried lots on n off all day and really tried .. Foggy head Sunday morning and not tearful..
Wishing you all a good day xxx

[Kobeobe7]

Hi everyone, sorry to read that so many of you are suffering with the dreaded side effects. I'm starting FEC T on Wednesday so I'm a bit behind you. Just remember each chemo session means we're closer to the end. I'm wishing away this Summer and constantly thinking in terms of weeks. Anything we can do to help us get through the process.
Manicmum - Keep strong with the hairloss. I'm not doing the cold cap and have spent ages reading posts about what to expect. I've met up with a friend of a friend who had FEC T and she gave me a very honest description of lots of aspects of the chemo! She cut her hair v short but then resorted to shaving it when it became super sensitive/painful. Then she felt no more discomfort. I think for me thst will be s low point of the process. I've been trying to coach myself in advance and remind myself why we're doing this. I hope your port appointment goes to plan this week. I'm getting a line put in on Tue and feel v squeamish about it but know I want one so will be doing lots of deep breathing and keeping my eyes closed.
Mazzi - I wonder if you could ask for stronger pain killers from your GP?
Gaynor - I'm pleased you coped with the cold cap, now you know what to expect and that's one chemo down!
Josie - did you get Emend? I've asked for it as it's not automatically given at my chemo unit and they were happy to prescribe it. I've heard lots of women say it really helped.
I'm already thinking about next Summer as this year is going to be like the summer that never was! How are everyone's children taking it? My boys are a bit quiet and not really asking any questions. I just feel so bad that their lives have changed so quickly. But this time next year we can all have that fantastic holiday we're missing. Take care everyone. Xx

[Manicmum89]

Mazzi I hope the pain stops soon. I'm on FEC I did have terrible pain for a couple of days. It did pass, and I hope yours does too xxx

[Mazzi]

Hi All, it's that time of night again and still no let up on the pain, I would just like to get through one night without waking up.:(  It seems we all have very different chemo going on mine is T FEC so the first 3 affect my bone marrow hence the physical pain and the next 3 may cause nausea, I started steroids the day before and also had PICC line fitted, I didn't go for the cold cap, I did write this earlier this evening but not appeared on my thread so apologises if this is posted twice! Hope everyone is doing ok x

[yil]

Hi

Yes my hair was the same on the 5th day of my 1st chemo they started to come off from behind ears andthen whent all over I had cut my hair very short with clippers.

Tack careYil

[Mazzi]

Hi All, much the same today, obviously we're all on different types of chemo as I am on T FEC so my first 3 courses are getting to the bone marrow hence the body pain, with the next 3 I have nausea to look forward to although hopefully I won't be too bad as I didn't have sickness while pregnant, fingers crossed. I started steroids the day before and had a PICC line fitted, I've now started taking the codeine although I can't be sure it makes that much difference. I opted not to have the cold cap in the end and after 30+ years of overstyling my hair I thought it would be a good opportunity to start afresh!. Have a good night's sleep everyone x

[Manicmum89]

Hope everyone is doing well.
My hair started falling out on Thursday 😞 head feels like my hair has been up too tight, then when I rub it loads of hair come away in my hands. Does any one else have this?
Second lot of chemo on Friday, but I'm in hospital Wednesday for bloods and to see genetics (as Im 34 and there is some family history), then my rebooked port op Thursday. Hate the sight of the place already!
Hope you all manage to enjoy the weekend x

[Gaynor1]

Hi all, first chemo yesterday went ok, tried the cold cap did manage to complete my time but only after a wobble in the first 30 minutes went very dizzy and lightheaded and had some uncontrolled shaking but after a couple of warm cups of tea and blankets I warmed up and managed to complete fairly easily. No problems with cannula in vein and no real side effects so far (day 2) except couldn't get to sleep last night so only dozed and a dry mouth I think from the steroids .Had a bit of a nightmare today with my bone marrow injection as Hosp forget to sent me home with it for district nurse to administer and had to go back to the Hosp pharmacy to collect it and then arrange for district nurse to come back . Anyway now awaiting to see if I get any side effects from this? Hopefully I won't get the Big Bang tomorrow!!

Mazzi , if I don't sleep to night as well I may well be on here with you although I hope your now picking up and will sleep better . I'm sure the boys will come round.
X

[Josie11]

Hi Mazzi, I hope today's been less sore for you and that you have a good nights sleep and that you are able to be with your boys
Hi Gaynor, I hope you have been ok today, did you try the cold cap?
Hi Hopefully Holly - how did your chemo go - I hope they got vein - will you need to get a picc line?
I'm still feeling pretty grotty with headache and sickness - afternoons are better than mornings - just like being pregnant! Hopefully tomorrow will be better. The chemo nurse said they'll reassess my drugs next time.
Take care everyone and have a good nights sleep, xx

[Mazzi]

Hi Gaynor, hope it went ok for you today. As you can see by the time I'm not sleeping well, third night in a row so need to be careful about sleeping a lot tomorrow as will get into a bad routine. I have to say I thought I had a high pain threshold and am not one for taking painkillers regularly but I have really underestimated the levels, at the moment my body aches but my calves and feet are really bad tonight, want to try to avoid codeine as already on senna tablets from gp as getting bunged up!!  I'm sure this is not helping my general feeling of wellbeing so hoping tablets will kick in tomorrow and I'll be a bit more perky, but if necessary I will stock up on codeine for next cycle. My boys are 16 and 19 and have already had so much to deal with in their life, especially losing there dad  and other close family members in recent years, we've had a bit of a shaky start since diagnosis but they seem to be opening up a little more now and realising I need more help. As a close friend of mine who has been through all this herself keeps reminding me the sometimes intense pain from treatment is a necessary evil to recovery x

[Josie11]

Hi Gaynor, I hope today went well so far and the you manage to get a good nights sleep, x

[hopefulholly]

Hi Gaynor, I would at least take paracetamol before, maybe even co cocodamol. I didn't have steroids before chemo, just on the day, half hour before chemo started I think. Sorry for short reply, getting ready for my chemo. Good luck, you will be fine, anticipation worse than the chemo x

[Gaynor1]

Hi ladies, and I'm feeling much better so today's the day of my first chemo which is going ahead. Hoping to try out the cold cap . Question - some ladies on the forum talk about taking a pain killer just before do you think I could do this today and if so what should I take not sure if paracetamol or ibuprofen is appropriate ? Also a little bit scared about my reaction to it today as I've not been given any steroids to take prior apparently all today!! Hope I'm ok tomorrow at least as got a wig appt booked tomorrow.
What a shame about your veins but I'm sure that you will be fine with the picc line if needed. Good idea to post on earlier forums. How are you now feeling in general ?

Mazzi , I'm following you with my first T/C today so maybe we can support each other as I will only be a bit behind you. I have two girls 22 & 19 still living at home and a husband that works for the ambulance service so works 12 hour shifts so will be on nights on days 3 & 4 . What have they given you to take for the muscle aches & pains ?

Hi josie11, sorry to hear your struggling with your sickness hopefully you are feeling much better now.

[joyce11]

Hi Hopefulholly

Feeling better today - went to see my hairdresser and got it tidied up and even shorter and she assured me she didn't have a sink full of hair. Bless her she was really good with a gentle shampoo, no products, no rough drying and aquick blast with a cool dryer. Woman in next seatcommented on how good it looked - so that mademy day really.

Next chemo next week so new worry is locating suitable veins but hey what will be will be.

[Mazzi]

Hi, had my first dose of Taxotere Tuesday, felt ok first day but have had the worst two nights ever! Every part of me aches but the worst is the fuzzy head and strange sensations, it's almost like it's happening to someone else. Have two teenage boys, sometimes they seem ok but at other times they can be distant, hate the feeling of being alone in the middle of the night so hoping this forum can get me through the long dark hours 🙂

[Josie11]

Hi Hopefulholly, I hope you're getting a good nights sleep and that your veins pop up tomorrow. The chemo nurse I saw said that if she needed a PICC line in, she would be at the top of the queue with her arm held out and she's been a chemo nurse for 30 years.
My boys are at mums just now which means I can slob about and every phone call is about whether my hair is gone yet and what colour wig I'll get - they do make me smile.
I'm sitting in bed with a case of the munchies eating oatcakes having had about 5 hours sleep now so feeling so much better at the moment, thanks for asking. Even if tomorrow is rough again, it just feels so good to have a break, x

[hopefulholly]

Hi Joyce, it's not surprising having a bad day, no matter how we think we are prepared, it's difficult when we start to lose our hair. I hope you're feeling a little better no, it's the shock I think. 

Fantasy, I too hate my hair, I'm shredding more hair than my dog but didn't realise how much hair I have, it's fine but there's a lot of it.

Manicmum, sounds like you had a rough time of it. It's very frustrating when things don't go to plan.

Josie, how are you feeling now?

Gaynor, did you check with your team? Can you go ahead with chemo tomorrow? 

I'm due my second chemo tomorrow but, as nurse had difficulty finding veins for yesterday's blood tests, my onc has warned that they may not get a vein for the chemo which may have to be delayed. Worse, I have to have a PICC line fitted next Wednesday.  I'm dreading this, not just the fitting but the thought of having this line in until October. I'm going to post in earlier chemo threads to get some advice / words of support. It's silly really, I've sailed through 2 surgeries yet I seem to have developed a dread of the PICC!

[Josie11]

Hi Lovewine, thank you for coming on and for your advice :-). Il definitely be pushing for emend for next time as this is pretty grim at the moment. X

[Lovewine]

Hello ladies! Hope you dont mind me butting in! I am from April 2014 thread, just to say to ask for anti sickness drug called Emend if you are suffering with nausea/vomiting- it is very expensive and the team usually see how you are with first chemo, ask for it and you should be given it for the following chemos, it really works and stops the symptons! You will get through these weeks, we are still a very active thread and we are meeting up for lunch in london next week, the support has been invaluable on this forum, i wish you all the best in your treatment!

[Josie11]

Hi Joyce, thank you. Yes I've got ondansetron and dexamethasone and they do seem to be helping today. Mum has the boys so I Was wondering when I could get them home. Been out for walk with the dog so that is a boost. X

[joyce11]

Hi Josie

After my first chemo the nausea lasted about 5 days but I was given pills to take home to help for the first three days and more if I needed them but I coped with ginger biscuits for the next two - but I guess it will vary a bit for us all. Were you given pills to take home?

[Josie11]

Hi all, I hope you're all feeling good today. I had a rough night last night with nausea and a horrible headache and 2 hours sleep. Today it's better, just like morning sickness. How long does it take till the nausea goes. X

[joyce11]

Hi Gaynor

If it was me i would give the chemo unit a call and talk to them rather than getting there and maybe not having the chemo. At least once you know you will be able to "relax" abit about it.If there is a delay then that is still better than being ill when you have it.

[Fanta-CB]

Sounds AWFUL manicmum. Being messed around like that is too much as we're going through enough! Mentally and physically preparing yourself for a procedure is a big deal. I had a port fitted yesterday and it was fine. I definitely opted for sedation though and even dozed off a bit. I also took beta blocker, proplanol for anxiety. Also I was expecting to have port in my chest but it has gone in under part of the top of my arm, half way between armpit and bend in elbow. It's a new thing popular in Australia apparently as it makes a small scar so more hidden under arm. It hurts today and is quite bruised. 2nd FEC today. I'm dreading them taking my plaster off!!! Kobeobe yes I'm surprised how many of is are in 40s too.
Hi Joyce. I'm even getting dreadlocks now! Visible Hair loss localised to crown for now. Tricky to hide with hair. Hope everyone has a good day xxxxx

[Manicmum89]

Sorry to hear you've been poorly. I think you should mention it. Your bloods will show if you have an infection. Hope you feel better

[Gaynor1]

I Am due to have my first chemo on Friday but just wanted to ask your advice . I've been a bit under the weather over the last week with a stomach upset which had now cleared but I'm now suffering with a sore throat, aches and pains and headache which paracetamol/ ibuprofen isn't shifting. Do you think I should mention this prior to my chemo and/ or do you think they may delay me starting if I'm not 100%.

[Josie11]

My boys are trying to get me to get a green wig like the archers on clash of the clans..... My prescription came today so that'll be the next thing to sort. I had my first chemo this afternoon so I'm waiting to see what happens next . 😧

[Kobeobe7]

Sorry to hear you had such a difficult day today Manicmum. I can completely understanding your feelings of frustration and disappointment. I'm probably getting a port fitted and I'm nervous about it. If I had mentally prepared myself for the procedure and then had all those obstacles thrown in the way I'd feel pretty hacked off too. I hope you have a better day tomorrow with your class.
Josie, my oncologist also said the same thing about morning sickness so I'll definitely be taking the anti sickness meds on offer.
I'm suprised how many of us are in our forties. I was so shocked when I was diagnosed but there's obviously a number of us 'younger' women working our way through this process. My kids (15,13,10) seem to be taking it in their stride. But they're not really asking many questions about it. I'm guessing when the chemo starts and I'm more tired and look a bit different then they might. I'm just counting down the days til chemo finishes and I haven't even started yet! X

[Josie11]

Hi manicmum, what a horrible frustrating day and no wonder you feel so fed up - it's so unsettling when things don't go to plan. I know I cope best when I know what is happening and when - we have so little control over what is happening and losing the little we have is bad. I hope you get a good nights sleep and a good day with your class tomorrow, x

[joyce11]

Hi Fanta

Like you I am wonderingif the cold cap is worth it - my second FEC next week and will talk to the nurses as well - part of me sayshave one more and see what happens but a great shock even though you know it might happen.

[Manicmum89]

Had the most terrible morning. Went to have my port fitted at 8:45 to find out that they had moved my appointment to tomorrow, but not told me. They said not to worry they would just about be able to fit me in.
Later they to.d me the doctor was stuck in traffic due to a crash so they would be late starting, but don't worry I'd still be seen.
It took three attempts to get a cannula in my arm. The veins kept collapsing, so now have big bruises and swellings on my arm.
Two hours later the doctor arrived. Great I thought, we can finally get on with it. Someone took my lunch request for after the fitting.
Next thing I know they tell me I can't be seen today as the Dr has had to go to an emergency and there won't be time to see me as you have to stay in for 4 hours post procedure for obs. I was really upset, I haven't been sleeping well worrying about he procedure.
They asked me to go back tomorrow, but I'm trying to see the end of term out with my class's, and I've been feeling well post chemo. I don't think my arms could stand any more needles this week
Going to go back next Thursday now.
I'd been doing so well and feeling positive. Now I'm really upset and strangely disappointed. My arm is all bruised and sore.
Goi g to go to bed and feel sorry for myself for a bit.
Hope you are all having better days xx

[Fanta-CB]

Hi Holly, I now have a bald patch on the top of my head which I can hide with a headband. But to be honest, I'm starting to hate my hair as I can't brush it, so it's a total mess. And I'm leaving it everywhere, all around the house! I want to be happy with my wig first before I do any drastic shaving. Not sure about the bandannas I got now.... I'm in hospital now about to have a portacath fitted. Second FEC tomorrow. I wish I knew if it was worth doing the cold cap or not… I feel it's not but feel I should keep going with it anyway... I will take their advice tomorrow. Xxx

[joyce11]

Hi All

Like you Holly my pills worked and managed with the odd ginger biscuit and many glasses of wine - seemed to help the sick feeling - strange that. Unfortunately yesterday took a downward turn when the hair loss thing became real. Am hoping that it is just where the cod cap didn't fit well and seeing the hair dresser tomorrow to go even shorter so that it is less irrittaing to me.