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September 2016 starters

Member

Re: September 2016 starters

Thanks. I'm glad it might settle down 😔

Member

Re: September 2016 starters

Hi
Yes, night and day especially my head. Hope it settles soon x
Community Champion

Re: September 2016 starters

Hi see see

Yes, I struggled with night sweats too. Found it was worse days 3 to 7 and then it settled down. Not sure there's much you can do about it! But know that it's relatively short-lived.

Sue x

Member

Re: September 2016 starters

Is anyone having severe night sweats on Taxotere?

Member

Re: September 2016 starters

Such good news that you haven't had SEs this time, Dawn, may it continue that way until the end. Boo to your husband though. Sometimes even the most loving of family don't quite understand how important places like this are when you are going through aggressive treatments. I have found it a Godsend for advice and empathy. I don't always post but I do read everything.

Anne, apparently it is very common to have an almighty wobble at the end of chemo. I think it must be because we invest so much energy in fighting this terrible disease and battling on through rough treatment and do everything we can to keep a sense of normality that it is a bit of an anticlimax at the end and probably relief that we don't have to dread that 3 weekly date anymore. So many emotions are whizzing round at this time that it is difficult to predict how we will react at any given time. Sorry, no good jokes here - I always forget the punchlines!

It must be Chemo Week because I had cycle three yesterday too. I took Emend beforehand and topped it up with Cyclizine and my nausea was much improved. I even ate fairly normally - plain and small portions but it was normal diet, not invalid diet! The nausea was still there a wee bit but I was very tired so that could be a contributing factor. I had about an hour at bedtime when it got really bad to the point of vomiting but I took a Cyclizine early on and that saved me from an unpleasant experience. I think the steroids are affecting sleep and eating patterns because I woke up about an hour ago starving but I keep a tin of table water biscuits by my bed for such events so now I just need to get off my phone and try for sleep again. I have a lecture at 9am which I don't want to miss. I do have an arrangement with uni to come in later if I need to but I want to keep that for if I have a really bad night/morning, which hasn't happened yet. Fingers crossed my new meds do the trick.

I hope everybody isn't feeling too unwell and their SEs are as much improved as Dawn and mine are. We can get through this, even the wobbles at the end of the line. Hugs to you all.
Member

Re: September 2016 starters

And the messages that do get through are often duplicated! 😭 I will have to go back to using the computer at a sensible time in the day, on one of those rare occasions when my husband thinks it is appropriate and doesn't complain about me spending too much time on it. I know I am often slow and stupid and therefore take longer over composing and typing messages than I should. Because I am so slow, there's rarely a 'good' time to do any of the things I need or want to do, only a time that is for some reason usually inconvenient for my other half. Hence trying to post on my phone at an unearthly hour...
Member

Re: September 2016 starters

Hello Ladies - and well done Madmac22 for getting to final stage of chemo even though it isn't the end of the treatment. I can understand the anticlimactic feeling, though, I suppose it is like so many other things in life, when you've been waiting so long to achieve some goal or reach a particular milestone, thinking you will be happy when you finally get there, but when you finally do, it isn't quite what you expected. I suppose we will all feel a bit like you when we get to the same stage, because it isn't the end of the road but just the end of this particular section of it, just a pause along the way. Sorry to get all philosophical, I can't think of any suitable jokes to cheer you up at the moment, it's a bit late. I have also just had my fourth cycle of chemo yesterday, the first of three T cycles plus the targeted biological therapy (Herceptin and Pertumazab) that is supposed to really go to town on shrinking the lump. And I am glad to say that I survived and have not been affected by nausea this time, so up to now I have been able to eat and drink normally, and have had none of the symptoms of sodium deficiency I had last time. I was therefore able to go back to the hospital again this afternoon for the Neulasta injection. I am sorry to hear that some of you are being plagued by nausea and loss of appetite again. Although the nausea I had before was very severe, it didn't last, so in some respects I have suffered less than some of you. As you know, this cycle was the one I'd been really dreading, because like others of you, I read about the SEs and the scary posts from other ladies who have already had Taxotere, and have been suffering. I'd also had a difficult time myself in the early days of my first and third FEC cycles, ending up in hospital, so I was apprehensive incase the same thing happened again and was seriously considering not going ahead. However, at the consultation with the oncology team last week I was persuaded to carry on, and was assured I would be monitored throughout the treatment and that the new combination of drugs is much less likely to cause nausea than FEC, although they can have other potentially serious side effects. I have been given steroids to help deal with some of these, and was warned to look out for bone and joint pains - am taking Paracetamol for this as a precaution - and indigestion/ possible digestive problems, for which I already have remedies for each possible scenario. The worst thing I have had so far is a flushed red face, which the nurse said could be a reaction to the Herceptin, but is nothing to worry about as long as I don't have a temperature as well. Unfortunately, our thermometer has chosen now to pack up so I can't check this at the moment - I seem to have got it a bit too wet last time I cleaned it and the battery has corroded - so I will just have to hope I am OK until tomorrow when we can get a new one. Which I promise not to get wet. There is another, more mundane, possible reason for the flushed red face though; I recently started using some new Nivea face cleansing products supposedly for sensitive skin, and I suspect they don't suit me, so I have stopped using them just incase. Will I never learn? I have gone back to the tried and trusted Sanex Demo Sensitive soap once more and if the redness goes away, we'll know the Nivea is to blame, not to the Herceptin. Still it's early days for this cycle, and there is plenty of time for more SEs to appear... though let us hope not. I will try to keep you posted but even the electronic communications are against me, I have had terrible trouble trying to post via my phone lately, I keep losing connection and getting error messages saying unexpected error or message unauthorised, resulting in inability to post messages I have drafted and total loss of the messages, because they were not saved. I hope this one gets through, otherwise I will feel like giving up. I don't find it easy to type on this thing as it is, and it takes a lot longer than on the computer. 😬
Member

Re: September 2016 starters

Hello Ladies - and well done Madmac22 for getting to final stage of chemo even though it isn't the end of the treatment. I can understand the anticlimactic feeling, though, I suppose it is like so many other things in life, when you've been waiting so long to achieve some goal or reach a particular milestone, thinking you will be happy when you finally get there, but when you finally do, it isn't quite what you expected. I suppose we will all feel a bit like you when we get to the same stage, because it isn't the end of the road but just the end of this particular section of it, just a pause along the way. Sorry I can't think of any suitable jokes to cheer you up at the moment, it's a bit late. I have also just had my fourth cycle of chemo yesterday, the first of three T cycles plus the targeted biological therapy (Herceptin and Pertumazab) that is supposed to really go to town on shrinking the lump. And I am glad to say that I survived and have not been affected by nausea this time, so up to now I have been able to eat and drink normally, and have had none of the symptoms of sodium deficiency I had last time. I was therefore able to go back to the hospital again this afternoon for the Neulasta injection. I am sorry to hear that some of you are being plagued by nausea and loss of appetite again. Although the nausea I had before was very severe, it didn't last, so in some respects I have suffered less than some of you. As you know, this cycle was the one I'd been really dreading, because like others of you, I read about the SEs and the scary posts from other ladies who have already had Taxotere, and have been suffering. I'd also had a difficult time myself in the early days of my first and third FEC cycles, ending up in hospital, so I was apprehensive incase the same thing happened again and was seriously considering not going ahead. However, at the consultation with the oncology team last week I was persuaded to carry on, and was assured I would be monitored throughout the treatment and that the new combination of drugs is much less likely to cause nausea than FEC, although they can have other potentially serious side effects. I have been given steroids to help deal with some of these, and was warned to look out for bone and joint pains - am taking Paracetamol for this as a precaution - and indigestion/ possible digestive problems, for which I already have remedies for each possible scenario. The worst thing I have had so far is a flushed red face, which the nurse said could be a reaction to the Herceptin, but is nothing to worry about as long as I don't have a temperature as well. Unfortunately, our thermometer has chosen now to pack up so I can't check this at the moment - I seem to have got it a bit too wet last time I cleaned it and the battery has corroded - so I will just have to hope I am OK until tomorrow when we can get a new one. Which I promise not to get wet. There is another, more mundane, possible reason for the flushed red face though; I recently started using some new Nivea face cleansing products supposedly for sensitive skin, and I suspect they don't suit me, so I have stopped using them just incase. Will I never learn? I have gone back to the tried and trusted Sanex Demo Sensitive soap once more and if the redness goes away, we'll know the Nivea is to blame, not to the Herceptin. Still it's early days for this cycle, and there is plenty of time for more SEs to appear... though let us hope not. I will try to keep you posted but even the electronic communications are against me, I have had terrible trouble trying to post via my phone lately, I keep losing connection and getting error messages saying unexpected error or message unauthorised, resulting in inability to post messages I have drafted and total loss of the messages, because they were not saved. I hope this one gets through, otherwise I will feel like giving up. I don't find it easy to type on this thing as it is, and it takes a lot longer than on the computer. 😬
Member

Re: September 2016 starters

Hello ladies, 

 

just thought id post to say that I had my fourth and final chemo therapy session today. So once I get through this set of side effects I'm off to radiotherapy which I'm due to start on 30 Nov for 20 sessions.

 

i really thought I would feel euphoric at getting the last session over with but instead I was really very teary all the way through. Staff were lovely as always and tell me that lots of people feel a bit down as they come to the end of chemo. It seems quite bizarre to me as I'm normally quite an upbeat person (or so I'm told).

 

So now I'm left feeling strangely flat and mortified at making a prat of myself! Anyone got any good jokes to cheer me up? 

 

Anne 

 

 

 

 

Member

Re: September 2016 starters

Little and often is definitely best when the nausea strikes. I find I go off meat, except for chicken and sweet corn soup. I have also found that some of my favourite foods sicken me and other foods that I rarely eat I can't get enough of. Coke is an example, although a friend of mine who is pregnant agrees that it is marvellous for sickness but we have found that it must be full fat Coke and it must be chilled and fizzy.

I am doing my best to eat healthily to avoid weight gain. It seems to be working so far so I hope it continues. I just hope my teeth don't drop out with all this Coke!
Member

Re: September 2016 starters

Hi Aine

 

I was given two big boxes of Thorntons choclates for my birthday last month and can you believe it they are still unopened Woman Very Happy

 

I seem to have lost my appeitite, and like you tend to eat little and often.  Haven't had a decent couple of tea for days nowWoman Sad

 

Everything just tates horrible.  I try and have something like boiled egg or scrammbled egg on toast and then next day have cereral.  I have Amy's gluten fee tomatoe soup - really lovely Woman LOL and then have either chicken or fish with fresh steam vegtables for dinner.

 

i just love the taste of Ritz sea sealt & vinegar crisps  Woman Very Happy

 

I am so worried about putting on weight, so far so good.

 

I know what you mean about the wig, hence why I paid trible the price for my new one.  The first one just felt like something plonked on my head.  I have not worn my new one much just for special occassions.  I thought my hair was growing last week but now realise just was just an illusion as it won't be long before I have no hair at all Woman Sad  I don't mind wearing scraves and the hats and most people seem to view it as a fashion statement rather than covering up the loss of any hair although it's a different thing when I look in the mirror and see what this is doing to me/us Woman Sad

 

xx  

Member

Re: September 2016 starters

Got last FEC yesterday.  Also got flat tyre on the way home and we had to sit for an hour and a half on a hard shoulder before the RAC fixed it - awful.

 

I took EMEND again this time and the nausea is quite difficult again but I think it does help a bit.  No other side effects except for tiredness, a tingling in my sinuses and off my food as usual.

 

Food tips ...my portions are very small but all I can manage ..I try to eat every 2 hours when I feel the nausea starting to rise

 

I eat banana on toast for breakfast

tomato soup for lunch - really settling on the stomach

veg and chicken or meat with one spud for dinner

 

Tea and a couple of biscuits do help settle the stomach

 

I find dessert is settling too .. I eat ice cream every day and pear and white chocolate crumble or another crumble....

 

I can't really look at chocolate or hot chocolate and I keep fruit to small portions.

Crisps are easy to eat too

Tesco do snack size portions of dried fruit and the one with some white chocolate covered raisins is v good

 

I am trying to overdose on big glasses of water - I tried flat diet coke but its hard to take a lot of it.

I do have a wee whiskey at night but this gives me heartburn - there's no pleasure in this is there!!

 

I too have been getting down about my appearance and the hats/wigs are ok if you are out for a walk but look silly indoors.  Thats the most difficult thing to get used to for me.  I ordered a second wig cos the one I have is far too artificial looking so I haven't got to the wig wearing stage.

 

I keep saying I'm halfway there.

It will be over some day.

Keep looking on the bright side and try to get something enjoyable out of today.

 

Aine

Hugs Hugs

 

 

 

 

Member

Re: September 2016 starters

I had to post this here because nobody else will completely understand.My named chemo nurse rang today and asked about my SE's from my last cycle of chemo. When I told her she agreed that prolonged nausea is unacceptable and has prescribed Emend. I have heard so many good things about Emend that I'm almost excited about tomorrow Woman LOL

 

I am easily pleased!!!!

Member

Re: September 2016 starters

Thanks for your input ladies - makes me feel that I am not alone.

 

Will go and stock up tomorrow onthe Vit B12 - anything that can help get us through this the better.

 

Hope your all feeling better soonHeart

 

Member

Re: September 2016 starters - Anyone else feeling like this??

Hi,

Chemo sucks but it works. At least it has for me. They didn't schedule a mastectomy first for me. Mine was already mastisized. They went straight to chemo and the first session the lumps in my breast diappeared.

This gave me great strength but I can't help getting emotional at times. I dread seeing my dr and hearing the words mastectomy not because ot the loss of boobies but because its a operation.

Its scary.

 

For emotions I take 10,000 mcg of Vitiman B12, it works. I did try to take less but it was less of a effect. I can tell the difference.

B12 coats your nerve endings and your general attitude about it all changes. 

 

I don't have the massive amounts of pain you discribe, even though my knees kill me. I ach from my Knee down. I do the round robbin of ibuprofin and tylonal every two hours and usually its not till the third round that it eases.

 

I did find out that instead of elvating them I had to have the knees down, like lower then my body.

 

Also Generally on the third day my temperture drops drastically. I put a tobogan on my head and sweater and think wool pants or throw blanket. I also get out a electric pad to put on my knees because usually later that night is when they start hurting.

 

I've been reading about rhumatoid arthritis and I'm thinking  about trying compression knee bands, I almost think its the build up of luids. My diarhea doesn' start till late the third day and once it starts then the pain eases till the end of the fourth day when I start loosing a lot of fluid.

 

The suckiest part is the taste butts. Can't enjoy your favorite foods while on chemo.

For me, any bread product has a nasty after taste. So no noodles, no pizza, no cake, no cookies none of my favorites. Some strong cheeses taste really odd so I avoid them. I did find that rice tastes normal, potatoes taste normal. eggs, shrimp, chicken. In fact I was so low on sodium after the fluid loss that I was ordered to eat lots of potato chips. Banana's are good. Fell in love with lemons. Plums when in season are wonderful. Can't taste apples, tomatos. I'd describe them as wet rice cakes.  Chinese food, mexican food if you stick to the rice and away from bread. My husaband makes the best Potato soup. Even though I crave a hamburger the bread...turns me away. I've even found myself pulling the bread off chicken nuggets.

 

Anyway, I hope you can find your light of what this is all about and that is life. I have three kids and every second of pain or discomfort just means I'm here for them. My mom died when I was 21. I've got to last at least that long so that they can be independent and start out with a good life. I'll do Chemo till they don't need me anymore.

 

  

Member

Re: September 2016 starters

I think the emotional side is often overlooked. I am usually a strong person as well but I have days when I feel anything but strong and being told I am strong and can get through this doesn't help! Luckily my nursing friends understand a bit more and even though there isn't a lot they can do they do listen to me moaning about how rotten I feel and offer hugs, lecture notes and silly jokes.

I haven't felt the need for counselling but I am glad that those of you who do have been able to access it.

I have a Special Birthday in December as well but I think I can work out my celebrations around chemo. I will also be on a good week over Christmas, as long as no viruses get in between my treatment plan and Me!

I have cycle 3 on Wednesday and I am dreading it simply because I know I will go from feeling extremely well to feeling like something the cat vomited by thr bed. Does anybody else get those Sunday night feelings before a chemo cycle?
Member

Re: September 2016 starters

Hi LIsad

I too have found the emotional side hard. When the emotions and the side effects coincided badly a few weeks ago I too referred myself for counselling away from the hospital (shorter waiting time). Only had one session so far but it did help. I've never really thought about outward image before but it's being forced on me now and it's hard to deal snitch along with feeling really rough. It also has quite an effect on your relationships and how you see feel about yourself and your need for support.

 

keep your chin up xx

Member

Re: September 2016 starters - Anyone else feeling like this??

 

 

Hi Ladies,

Well 3rd chemo session last Wednesday and yesterday my whole body felt like I had been run over by a bus! My whole body hurt like mad all my muscles hurt everywhere, really painful in trying to sleep and felt totally exhausted today, although have pick up hence posting now.

 

Went to see my breast surgeon last week re reconstruction, had a chat and once radiation has finished she plans to do some more reconstruction surgery to tied it up. Going to have some saline taken out as find it really bulky and uglyWoman Sad

 

Had a bit of a breakdown moment and she realised that despite my bright happy face I am not really coping very well with it all emotionally and has referred me for counsellingWoman Sad

 

I was given a few tips today by two old ladies reading change of diet, have a diary free diet, take Vitamin C every day. Take bicarbonate soda twice a day, reduce sugar intake. Have a handful of almonds. – This is going to take some adjustment!Woman LOL

 

Aine – re holiday, my 5th session is the 7th December, so I am going on the basis that my body will be in recovery period for the Christmas break, hopefully I will be able just rest on the sun lounger all day!Smiley Very Happy

 

Hope you are all Ok - just realising how horrible this all is and how I can't wait for it all to be over Woman Sad

 

Lisa xx

Member

Re: September 2016 starters

Hi,

 

Cycle 3 chemo session completed today, went reallt fast as no cold cap (reduced session by 1.5 hours) and my oldest friend was wih me. I am feeling slightly knackered this afternoon, so won't be pivking the kids up or cooking tonight !

 

I am on 8 three week cycles of FEC,  having 4 cycles of T (Docetaxcel) first and 4 cycles of FEC afterwards, followed by Surgery, Radio and Hormone Therapy. The 1st cycle of T didn't go so well, I think they overdosed me and I I ended up being admitted for neutrapenic sepsis at the end of Week 1. So they reduced my dosage to 80% for the 2nd cycle. This was similar to the 1st cycle in terms of SE's, they gave me different drugs to sort themouth thrush and I improved from the the middle of week 2 onwards and felt great, only tiredness in week 3.

 

Thank You for everyones encouragement and advice re: asking for other drugs to manage the side effects. I have been given some different drugs today to try and counteract the horrid bone pains which lasted for 5 days on cycle 2 and I liken to the contractions I had when having my 2 kids, so keeping my fingers crossed those will make a difference. They have also given me some different anit- nausea drugs to try once a day and said I can take Gaviscon aswell as the Lanzaprazole indigestion tabelets when needed. Just need to manage the drugs to counteract the Constipation/ Diar... and I will be sorted.

 

I am not looking forward to the 4 FEC cycles and will use all the great advice on here to understand what I  might expect and to help manage the side effects. I was hoping the Oncologist might tell me I only needed 3  + 3 cycles after seeing my scan results, but no such luck ! There is one positive, I will be on a set of drugs I know for my big Birthday in December Woman Happy

 

Hoping you are all doing ok and the side effects are becoming more manageable.

Sending you big hugs.

Hx

 

Member

Re: September 2016 starters

Hii Atomicjojo, and welcome to the September 2016 Starters. I'm not on the trial you mention either, but hopefully if anyone else is they will respond. It seems you are on a different chemotherapy regime to me and some of the other September Starters, which may be why you are on this trial and others aren't. From what I've gleaned from the Cancer Research UK website, many clinical trials are limited to a particular hospital or NHS Trust area, and are also time limited. So it might be worth mentioning which hospital is treating you, what the aim of the trial is, and how long the trial is going on for, incase it rings any bells with other Forum Members. You could also check the other monthly threads to see if anyone who started earlier or later this year is on the same trial as you. Glad to hear you are getting on fairly well with your regime so far - spotty scalp apart - and hope it continues.
Member

Re: September 2016 starters

Hi Aine, 

 

sorry i should have been clearer. This is the one and only forum I've ever posted on. I must surely get the hang of it soon! 

 

The TC treatment I am receiving is T= Docetaxol and C = cyclophosphamide (not sure about the spelling for the last one). I'm just about to get my fourth dose. I'm not tough or brave, in fact I'm a bit of a wimp so if I can get through it, I'm sure you will too. 

 

I couldnt agree with you more about how useful this forum is and will, no doubt, continue to be. There have been times when I have felt quite lost/low and sometimes just bemused/overwhelmed by all the jargon and information. And while I wish no one had to be on the site, I am eternally grateful to the many new virtual friends for all the hints/tips and guidance. 

 

Anne

Member

Re: September 2016 starters

Thanks for replying and offering me reassurance.  I am doing the Cycle 3 FEC tomorrow and then 3 cycles of Docetaxyl...is that what you mean by TC?

 

I have started to read the July and August threads... interesting reading indeed but also frightening.

As you point out the FEC treatment has also bad side effects and I have suffered bad nausea myself ....I am now the weight I was when i was 16 and never thought I would ever see under ten stone again!

 

I have spent most of today reading the threads on this forum and I would like to sincerely thank everyone who has contributed.

I would have felt very isolated without this contact and I am sure many of you would also say that you find this enormously supportive even if we are doing it in a 'virtual' world.

 

Sue - many sincere thanks

 

A

Member

Re: September 2016 starters

Hi Aine, 

 

First dont panic! Everyone reacts differently to chemo drugs so just because some struggle and have a bad experience doesn't mean that everyone will. 

 

I have no experience of FEC but I have read about everyone having terrible sickness and nausea. And to me FEC sound horrendous! I've not had anything like that on TC. I've taken the anti sickness drugs and I've been fine. 

 

I had no pain at all on my first TC cycle. But unfortunately I developed neutrpenic sepsis as I took an infection just when my blood counts were at their lowest and spent some time in hospital. But I suspect this would have happened regardless of what type of chemo I was on and it was all just bad timing.

 

After round one, the docs decided to give me G-CSF to boost my white blood counts. I self inject this once the day after each session. I was warned that I would experience pain with this drug and it has indeed given me really bad bone pain. I've tried taking Clarityn but don't know if it helps - cause I don't know how bad I would be if I wasn't taking it. But the pains only last about three days and then start to subside. So I have about three bad days each cycle and then the rest of the time I'm a bit tired but trying to counteract this by walking each day and just generally eating properly and resting when my body tells me too.

 

My oncologist warned me that TC was challenging and would knock me on my @rse. His words not mine! But it honestly hasn't been as bad as I thought it might be. And there are a number of others at the hospital on the same treatment as me and they seem to be having a similar experience. 

 

I know that there is no way to predict who will suffer the worst side effects and who won't. But I just wanted to try and reassure you that not everyone gets the worst of the side effects. And it really is just a case of waiting to see how your body reacts and if you do have problems then don't be a martyr as your team can adjust your mess to help minimise the side effects. 

 

Anne

 

 

Member

Re: September 2016 starters

I have just been reading the August threads........the comments about the T cycles are frightening me ladies.

 

I am quite shocked after reading these.  I would like to know if we are all going to find the T cycles unbearable or do some people get through it without bad reactions.  

 

Has anyone got any thoughts on this?

 

 

Member

Re: September 2016 starters

Hi people!

 

Cacie - I didnt take the anti-histimines (couldn't face any more stomach upsets) and my rash has almost gone.  My nurse says they would have made me very drowsy.  I'm sure they were not insect bites but an allergic reaction to something dunno what.

Yes the camaraderie is very cheering and i agree you get sick of talking to people who don't have a clue what you are going through.

I have the garage full of paint and intended to paint the whole house - didn't realise how sick I would be the whole time.  This time I haven't the energy to do anything except stagger around the house trying not to look in the mirror!!

 

Delighted to hear some of you are seeing results from the chemo - so it must be doing us all some good.

 

SeeSee I am starting cycle 3 tomorrow and would be interested to hear how you get on with cycle 4 T drugs.

 

I worked out I have 9 weeks to the last poisoning session.  There is actually an end to this but you can't actually visualise this until you are at cycle 3 i believe.

 

Lisad - how on earth are you going to go on holiday!!! You are exactly the same time scale as me and I can hardly get up and down the stairs most days.  If you knew me you would understand - I am usually the fittest person I know and am all go!  But this has floored me and the nausea has taken all my energy away.

 

Happy Halloween everyone!!

Member

Re: September 2016 starters

Weekend warrior and Dawn, 

 

hi. Just wanted to pop on a quick not to say I'm really delighted that you are both getting positive results already from your treatment.

 

Thats fantastic news and very encouraging for those of us who are getting our chemo post surgery and can't see any results.  And while it's not easy it really helps to know that it does work it's magic.

 

Hope everyone has had a good, side effect free (or at least minimal side effect) weekend.

 

Anne.x

Member

Re: September 2016 starters

Hi Atomicjojo, 

 

Welcome. 

 

im not on the trial and in fact I've never even heard of it. What is the trial? 

 

But I am on TC and from the outset I was advised I would only receive four cycles. No one ever mentioned that I might need 8. And while I've got on fairly well with TC, I'm not sure I could have coped with 8! eek at the thought! 

 

Im due my fourth (and hopefully finally) round of TC on Wednesday. And I've already been sent all my radiotherapy appts- guess what I will be doing all of December! 

 

i must admit while I know we are all different I do wonder at the huge variance in treatments and the different opinions you get about the best treatment within the same hospital never mind Health Boards.

 

anne 

Member

Re: September 2016 starters

Hello everyone!
Just introducing myself, next week will be my 3rd chemo. I'm on the Rosco trial & started off on TC regime.
Anyone else also on the trial? I'm hoping for just the 4 cycles instead of 8 plus me & TC have got on fairly well...We have an understanding you know!
Looking forwards to making some new online friends xx
Member

Re: September 2016 starters

Worcester Warrior - that is great news, and means you are not putting up with all the SEs for nothing! Mine had also started to respond better than expected after only the first cycle of FEC, and after each subsequent cycle it has got softer. So despite it being HER 2 + the FEC cycles have had some effect. Are you having the FEC and the T (Docetaxel) together each cycle? That is different to my regime, which is 3 FEC followed by 3 T with targeted biological treatment (Herceptin and Pertumezab). I am now awaiting the final three cycles with some trepidation, but it is these cycles that are expected to have greatest effect in shrinking it, so it is encouraging to hear that Docetaxel is working for you. I hope your SEs aren't too bad next time, it is the not knowing how you will react that is the worst thing.

Member

Re: September 2016 starters

Aine - sorry for not responding sooner but glad you got your refund without any further hassle.

Member

Re: September 2016 starters

3 rounds down - 3 more to go - We are survivors.

 

We will be stronger,braver and smarter than before we started this journey.

 

Managaed to change my last chemo session due on the 28th Dcember for a week in Limmasol over Christmas and have last session first week of New year.

 

Hope everyone is coping with the chemo xxx

Member

Re: September 2016 starters

It's coming to something when washing your wig is exhausting 🙎🏻😵.

 

At least having a PICC line and not wearing the cold cap made the chemo administration painless and having a bald head made the Indian head massage a much more pleasant experience. I also had an offer of a meet up from a work colleague. It's nice to know you're being thought of by others.

 

Just waiting to find out what the side effects of docataxel will be. Will update for anyone who's on FEC-T and not got to this stage yet. 

 

Best of luck to everyone else coping with this xx

Member

Re: September 2016 starters

Hi,

I wanted to let you know the chemo treatment is working. I had an ultrasound scan earlier today and my lump has shrunk by 1/3 of its size after 2 cycles of Docetaxcel (I am having 8 cycles of chemo FECT first before surgery to try and reduce its size). The lump is down from 3.1cm to 2cm, so although I am not looking forward to a week’s worth of horrid side effects following next Monday’s cycle 3, l now know the chemo is doing the job it was meant to.

I really hope this message gives everyone a bit of encouragement and wish you all well at whatever stage you are in your journey.

Hx

Member

Re: September 2016 starters

Do you think that beasties are attracted to the chems.....if they are bites ?
Cacie
Member

Re: September 2016 starters

Aine
I've been meaning to get back to yoga, youve spurred me on. I think your point about a social group who are in it together will help with the isolation which seems to pop up randomly. A collegue from my course came round last night... she did at the same time during cycle 1. She is reaching out to me rather than me grasping at friends and family for time. What a god send... we listen to each other... so much in common... an unexpected gift of friendship blossoming... most unexpected as we are both extremely independent. Shes back same time next cycle 😊 Off to paint the kitchen! Slowly - lol, with a few brews and a couple of sit downs aling the way ... chin chin! 🤗
Member

Re: September 2016 starters

Hi all!

 

Firstly I want you all to know that Hats4Heads eventually got back to me after I emailed them again.  They were very cooperative and said they would refund my headband wig with no questions.  They said they did not get my email about my complaints.  So I am happy enough with that.  Thanks for the advice from several of you about how to pursue my complaint.

 

Cacie - I am at exactly the same stage as you.  I developed an itchy chest rash with what looks like insect bites 5 days ago.  I got a course of antihistimines to take.  I dunno what caused it but its interesting you have had the same issue.  I am supposed to be on the good week this week but I feel very tired. 

Just say to yourself you are half-way through when you get Cycle 3 shortly - I counted 68 days to the final chemo!

 

I love my hat wig from Headcovers.  It looks just like my own hair did so I can at last go out in public.  It does tend to slip up a bit under a hat but I have a large head so that is why.

 

I'm still waiting for the Heathers Hair hat wig to arrive - it will be great to have an alternative.

 

I tried out a Pilates class on Monday at my local Macmillan centre and it was a great idea.  I met 6 woman who were just recovering from chemo and it was fantastic to talk to them.  defo going back.  We had coffee together after and it made my day.  Hope you all get the chance to do the same.

 

I just saw a ridiculous thing this afternoon.....the local council putting up the wee Christmas trees they attach to lampposts!!!  Omg it is not even Halloween!!

 

Also Tesco has that offer of 25% off wine if you buy 6 bottles....guess who bought 12 bottles today!

 

Chins up!

Aine 

Member

Re: September 2016 starters

Hello Auntienanna.... keep an eye your cold. I had one when I first started my chemo and its never really gone away.  I have spent the weekend in hospital with pneumonia! Home now with anti biotics and feeling much better... get well soon xx

Member

Re: September 2016 starters

Hi - never thought I'd be relieved to know others are experiencing constipation from hell too. Now on day 10 of 2 cycle and symptoms including feelings of loneliness and isolation all subsiding into a reassuring pattern. Mouth driving me nuts but prosecco gummies from Lakeland a god send. Cant believe I cant stand alcohol in my mouth - i really dont mind others drinking either... quite bizarre. Found 3 blotches on my chest tonight, found myself reading about skin mets then decided possible puncture points from beasties was the preferred self diagnosis at this point on Sunday night. Took anti hist and rubbed on a bit of bite cream....I'm going to try your advice and wash the 'wig', took it out last week to hairdressers for a trim ( great advice it does look ok) and wore it on way home. Its been back in the box ever since... opting for scarves feels sufficient for now. Nearly bold - hubby thoutfully hoovered me yesturday....made us laugh heartily. Biggest learning this week was not sharing my 'lows' with people who are too emotionally volatile and it becomes about them rather rapido, although it does distract your own victim thoughts some what. The second thing is to be honest, stop protecting others as some dont need it and really will muck in if you stop trying to be independent and let them help. Looking forward to 11 days of heaven ( fingers and everything else crossed) before the last fec.... its working... my lump has definitely responded and the inflammation almost gone. I reckon its back to about 7 cm. Not looking forward to predicted cummulation of fatigue but hubby on mission to frog march me everywhere so should help🙄. Be strong, be brave and eat whatever tastes delicious ever now and then! C xxx
Member

Re: September 2016 starters

I think I'm getting a cold Woman SadWoman Sad 

Community Champion

Re: September 2016 starters

Hi Ladies

A little tips re your wigs.

It will help a great deal to wash it with the appropriate shampoo before starting to wear it.

Let it dry naturally and brush through. It should make the hair and the whole wig a bit softer.

It often is a good idea to go to your hair dresser and get it shaped to your 'old' hairstyle and have it a

little' thinned' out, too. Mind you - it will depend on your style of wig.

Hugs

Sue xx 

Member

Re: September 2016 starters

Aine - forgot to mention, if you don't get your money back and your local council trading standards can't help, you could try Which. There is a Consumer Rights section of their website where you can get free advice, even if you are not a Which member. From what you have said, it sounds to me that they have broken the law if they have supplied you with goods that are not as described on the company website. The Which website will give you advice on your rights as a customer, the best way to complain to get results and they also publish standard letters on their website for people to use when making a formal complaint/ request for a refund. I hope this helps.
Member

Re: September 2016 starters

Aine - forgot to mention, if you don't get your money back and your local council trading standards can't help, you could try Which. There is a Consumer Rights section of their website where you can get free advice, even if you are not a Which member. From what you have said, it sounds to me that they have broken the law if they have supplied you with goods that are not as described on the company website. The Which website will give you advice on your rights as a customer, the best way to complain to get results and they also publish standard letters on their website for people to use when making a formal complaint/ request for a refund. I hope this helps.

Member

Re: September 2016 starters

Aine - sorry to hear about your disappointment withe the hair for hats. I have had a look at the Heather's Hair website as well and it certainly looks worth try as it is a charity so they are not asking for much money and you don't have much to lose. I don't know whether it is best to get the light coloured hair if you want to dye it but perhaps they can advise you if you ring them. On the subject of constipation (sorry folks! 😞) I have not tried Laxido but find that glycerine suppositories are usually effective when nothing else works. I had a really bad episode of constipation while in hospital after my first cycle of FEC, and suppositories were the only things that got me going, even though they gave me Lactulose and Senna tablets in the hospital which may have helped a bit. Things have not been anything like as bad on the last two cycles, but I have still needed some assistance. Suppositories are not very nice to use but neither is constipation, so I would definitely recommend anyone affected to give them a try if you can manage to overcome the yuck factor.
Member

Re: September 2016 starters

I was exactly the same with Senna. The cramps were horrendous. But Laxido well worked for me- literally!

 

And really sorry about the Hat for hair issues mentioned below. What awful customer service! I went down the Heather's hair route and got something for under hats from them. They looked really strange until trimmed but now I'm delighted with them. They are fine for out walking and all they ask us a £3 donation for postage. Although as they are a charity I sent them a little extra. I've got two different styles- real hair so you can dye it. 

Why not give them a try? 

 

Anne

 

 

Member

Re: September 2016 starters

Hi
I found Laxido drinks help me the most for constipation.
I take one a day to keep it at bay, but if you are bad take 3 or more a day.
The senna gave me bad stomach cramps. : (
Member

Re: September 2016 starters

I'm sorry you have had such a bad time Aine but it is good to hear that you are feeling better. I hope you get your wig sorted to your satisfaction, it has such a huge effect on your self image and esteem. I picked up my wig yesterday and it has made such a difference to how I am feeling.

 

Is it worth getting in touch with trading standards about your hat-hair? Although that does take energy which is in short supply.

Member

Re: September 2016 starters

Thank you all for the advice. I rang the chemo unit this morning and the nurse I spoke to advised me to ring my GP and ask him to prescribe Cyclizine, which I have done. I know it can cause more bother than it cures but I shall try it from today and if it turns me into a zombie over the weekend I shall ring back on Monday for something else.

 

Being a student nurse is a two edged sword. I've looked up both Cyclizine and Emend (aprepitant is the actual drug name) in my BNF, because we are encouraged to research. Possibly not a good idea Woman LOL It's the same reason I never read the information leaflet in medication boxes either...

 

Incidentally I would always encourage my patients to seek alternatives if medications aren't working, so why question it in myself?

Member

Re: September 2016 starters

I was bad for 9 days after cycle 2.  Now on day 11 and I am fine.

 

Metoclopromide - took it after day 5 drugs were all done - made me dopey and unable to eat or move for 4 hours- not taking it again.

Cyclizine had the same effect on cycle 1 - not taking it again!

 

I still say Emend was a godsend - kept the nausea at a controllable level for 3 days,

Yes you have to ask in advance - I phoned the helpline a few days before cycle 2 and discussed it.

I had to take it one hour prior to chemo - this delayed the whole thing by a couple of hours on the day but was worth it.

 

My hair is 60% gone and I feel pretty down about it.  I hate my wig and am going for a review on Monday.  Its too shiny and all the one blonde colour.   

 

Lisad your wig is gorgeous - different shades which looks natural - you could wear it anywhere and look great.

 

Hats4heads hairband with hair at the back....

not impressed at all with them.  The band was 52 instead of 57cms so far too tight.  The hair was far too fine and completely unconvincing.  

They would not reply to my email querying this - I actually offered to send it back to they could cut the hair in half and double up the thickness - but they ignored my email.

I thought I would add a piece to make the band looser.

I emailed today saying I had enough and wanted a refund (£28).  I suspect I won't get it.

I will update you all.

 

Constipation (charming!) issues anyone?

I swapped from lactolose to Senna which is more natural my nurse says.  

It is a good bit better but it is quite a problem.

I am going to use suppositories next time (yuk) ...I am sure this will be easier on my system

 

Keep positive and are you all enjoying this lovely autumn weather - get out for lots of walks  XX

 

 

 

 

 

Member

Re: September 2016 starters

Hi Lisa

That's a shame but they obviously have your best interests at heart. I'm just having round 3 as I type.
Hope you get on Ok with the rest of your treatment
Love Sarah x
Member

Re: September 2016 starters

Auntinanna - I am also sorry to hear you are still feeling sick on Day 7 and agree with the others that thishis is too much. Although I have had very severe nausea on two out of three cycles - bad enough to cause complications that sent me into A&E - it has never persisted beyond Day 4. Unfortunately, it's a job to know what to recommend because no anti-sickness drug has worked consistently for me. Emend did not work for me on my first cycle. Akynzeo worked very well on my second cycle but not at all on my third. Cyclizine did stop the sickness on the third cycle, but it also made me very sleepy and stupid, so I would only recommend asking for it as a last resort. Though at least it will give you some rest if you have had trouble sleeping due to the nausea. The hospital gave me Cyclizine to take while I was in there last week and also prescribed me a 3 day course to take home, so it must be available on the NHS. You really must ask for something better today lif you are still feeling bad, because what you've been given clearly isn't working, and enough is enough. I hope they will give you something more effective soon.