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Anyone starting chemo August 2015?

Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Thats good to know about the sweats. I have had spasms in the tops of my legs and in my back. Its all doable but a bit annoying especially today when I was at my hospital appointment and walking down the road and I would suddenly spasm. Im with you on the uncle fester look 🙂 We might find it strange to have hair after this and Im thinking when mine grows I might have to shave to get rid of the fuzzy weird bits. I might have to pop into Boots and see if they will do the same. I have some eyebrows left it just looks like I have had them plucked in a odd way 🙂 xxxxxx
Richelle
Member

Re: Anyone starting chemo August 2015?

Hi Sarah I think the sweats will stop once the chemo has as mine do get better by the third week and seem to be at their worst when the drugs are at their peak performance 😅

 

Tania I didn't  cold cap and only lost most of my brows and lashes when I started the T I have had to resort to an eyebrow pencil and false lashes but went into boots and they gave me a free makeover and put the lashes on for me to show me how to do it, trim them etc, the benefits counter is licensed to fit them and the girl at the number 7 counter was fab and I even got a lovely little goody bag from them as they knew I was having treatment

 

My hair has started to grow but not properly and in patches so having left it for ten days I had to shave it again as started to look like uncle fester on a bad day 😜

 

I have had had some muscle cramps but in bizarre places like my wrists/forearms and ankles ? XXXX

Tania786
Member

Re: Anyone starting chemo August 2015?

Thanks Richelle, i do hope I have mild SE with the one too. What about the eyebrows? I still have my eyebrows and eyelashes but I'm checking them everyday to see if they are gone thinner.

Sarahd - i tried cold cap for the first 2 cycles and then I trim them almost like stubble. I still have some of the stubble but most of them are bald parches now. I would like to know if they start going back while on T. I too have fuzzy covering.
Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Sorry Richelle me again. Did you have cold cap? I didnt have the cold cap but a few ladies have said their hair started to grow back whilst on T. I have a fuzzy weird covering that has been left over and I look like my dad! lol xxxxx
Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Hi RIchelle. I have had these sweats in between FEC3 and T1 will these stop after chemo do you know? Do you have muscle spasms? xx
Richelle
Member

Re: Anyone starting chemo August 2015?

Hi Tania SE were much better on the second T the extra steroids were a god send, still felt tired from day three to day seven with mild joint pain, some finger and toe pain but only needed occasional  paracetomol. Night sweats were an issue but not sure if this was the chemo or GCSF injections. Eyelashes have all gone now and some minor mouth discomfort but my dentist prescribed a high fluoride toothpaste before I started which seems to have helped. On the whole a million times better than the first one so will keep my fingers crossed yours is the same xxxx

Bibi44
Member

Re: Anyone starting chemo August 2015?

Sarah I'm fine thanks, just enjoying last couple of days of freedom before Herceptin on Fri & tax on Mon (eek).  A lady at golf told me they were told to dry their cuticles with a hairdryer after bath/shower on tax. I hadn't heard that before . . Will be nice to check if the thing still works as it certainly hasn't been used for weeks! Glad you're feeling better Tania. xx

Tania786
Member

Re: Anyone starting chemo August 2015?

Hi Sarahd - that's exactly what i go through some days....every little thing comes in my mind... Glad i'm not the only one who has all these worries. I am now thinking that I've done 4 only 2 to go and after next weds it'll 1 left. Almost there...

Hi Richelle - I understand you had the 2nd T, sorry missed your post. I'm due to have my 2nd next Weds. How did you find it? I haven't had a good experience with the first one. Do you mind sharing your SE with me pls and how you coped? Thanks
Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Hi Ladies I hope you are ok today? I agree Tania. I have super low days! Its normally around day 6-10 and my mind works over time. I wonder how on earth I am going to deal with the next lot of chemo because I have had enough of it and how it makes me feel. I worry how once this has finished. Will I be able to go one day without thinking about it and will I now forever be paranoid about it coming back. The list of questions in my head is endless. But from talking to other people they seem to do it. Richelle you have one more left! How do you feel? Its good to hear the 2nd one hasnt been too bad. I have heard that a few times now. 🙂 I have had a bit of back pain today. I dont know if I have been sitting at the computer badly of if its the chemo but I have taken a tablet so all good. Ihope the mouth ulcers go soon jhbee. Lisa jane and shazza hope you are ok too. Bibi you must be due your next lot of chemo soon? How are you feeling? Debs hope you are ok today too. xxxxxxxxxxxxxxxxxxxxxxxxxxx

bravescholar
Member

Re: Anyone starting chemo August 2015?

I don't have much to add other than i think it's important to accept that these feelings and down days are completely normal. They're not a sign of weakness and we shouldn't be hard on ourselves for feeling low. And it's important to let people know and talk about it and not keep it bottled up. One day at a time xxxx
Tania786
Member

Re: Anyone starting chemo August 2015?

Hi jhbee - I'm having T every 3 weeks same as FEC. I got two more to go and radiotherapy. With regards to mouth ulcer I had been using Biotene mouthwash but it didn't help when i started T. My onco has given some gelclair sachet to rinse my mouth. She alsi suggested using Corsydol.

Hi Sarahd - I do have someone like me lady and I managed to speak to her yesterday. She had same ca as mine 4 yrs ago, i felt a bit better after speaking to her. I think we all know that we need to stat positive and focus on treatment but there are days when everything comes in your mind and you just think about them and get worried....

Hi Lisajane - someone like me service is very good, I'm finding it helpfull as sometimes family and friends don't understabd what we are going through and our feeling. I had a really bad 3rd FEC cycle and was so down cried for the whole week. I then email the lady and she very kindly rang me back the same day and she shared her experience.

Hi Shazza, good to hear that you're feeling better now. It is true that staying home doesn't help and our mind starts wondering! Everyone say oh just keep yourself busy.. easy said then done!
Thank you everyone for your suggestions and kind msg... Feeling better.

Hope you all have a good week and treatments.



Bibi44
Member

Re: Anyone starting chemo August 2015?

Hi ladies sorry some of you are not feeling too good/positive at the moment. I think it's a perfectly normal reaction to what we're going through, we just have to do everything we can (diet/booze) & hope/pray we are amongst the lucky ones. I think Sarah's idea of talking to people is also good. Remember with any statistic that it doesn't tell you what will happen to you. If it's a 99% chance, you can still be in the 99 or you can be the 1. Big hugs to all xx

HazelBarney
Member

Re: Anyone starting chemo August 2015?

Jhbee, I had awful mouth ulcers last week and got some gel called Anbesol from the chemist and found it very effective.

 

Richelle
Member

Re: Anyone starting chemo August 2015?

Sorry to hear some of you are having a rough time, I think dark thoughts are natural at times given what we are all going through and talking about feelings and fears can help relieve worries.  As some guru said express don't suppress!  

 

I went to a support group last night for the first time and there were about 15 women there many a number of years down the line, all in rude health and planning an outrageous Xmas party night! 

 

Also, wanted to say the second tax with the steroid tail was much better than the first one and I have felt much brighter after only a week this time with very little pain, so keeping my fingers crossed for those on tax having an easier second round xx

 

That said I've been madder than a wet hornet all week which is new but luckily my very patient family have resisted my concerted baiting attempts thank goodness 😡

lisajane7878
Member

Re: Anyone starting chemo August 2015?

Tania I have been the same this last week too. Read a few things online that have worried me sick all week!! I don't know why I do it to myself. It's like watching a horror movie and having your hands over your face the whole time!! Why do we do it to ourselves. I'm thinking about contacting someone to talk to as I just put on a brave face to family and friends. And all they say is your so strong!! When inside I just feel like crying. As daft as this sounds it's the kids that upset me the most and leaving them without a mum so young. I have always felt for friends I have who lost parents at a young age and even my mum lost her mum in her late 20s and now I'm faced with possibly the same for my two. I just think it's so unfair for them. It's awful to think but I have a friend who drinks loads and smokes and isn't the best mum in the world. I find myself thinking why me!!! I'm a good mum and so healthy. I know that sounds awful but you have these crazy thoughts at times. I just can't bare the thought of not seeing them grow up. Maybe it's the chemo that's making me low as it's not like me at all. Anyway that's enough of me ranting!! Xxx
jhbee
Member

Re: Anyone starting chemo August 2015?

Thanks Sarah

x

Sarahd-1
Member

Re: Anyone starting chemo August 2015?

I have been rinsing with Cordysol mouthwash 2 or 3 times a day. And when I have felt sick I have used Difflam mouthwash as its a nicer taste. I also have a difflam spray. I havent had mouth ulcers yet fingers crossed but I always feel like I am going to. xxxx
jhbee
Member

Re: Anyone starting chemo August 2015?

I have a question ladies - any good tips for mouth ulcers?

I have used Igloo cream pre-chemo and it worked a treat but these chemo mouth ulcers don't want to go (reflection of my body's current dodgy resistance I guess!!)

 

Jhbeex

shazza45
Member

Re: Anyone starting chemo August 2015?

Hi Ladies - I'm just bad same as you Sarah and Tania, I know I shouldn't look stuff up and read other threads but find I can't help myself. I read some stuff last week which I regret as have been in a state for the last week and gave totally stressed myself out. I am feeling a but more positive today though so that's good.
It's hard stuck at home, I do see lots of friends which I love but I get down sometimes hearing all about what they're up to.
Never mind enough morning, good and bad days on our journey, onwards and upwards!!! Sending hugs to all xxxxxxxxxx
Sarahd-1
Member

Re: Anyone starting chemo August 2015?

I agree about not reading the other threads I was doing that at the beginning and I think thats what got me in a state. I also agree Debs as to becoming a bit of a hermit I have to kick start myself again after each treatment. Stupid as it sounds having the hospital appointments mean I have to go out and once I have started I want to be out all the time and get fed up when I know I have to stay indoors again. I asked for some help this time and this website have volutnteers on here called "someone like me." You speak to a lady who co-ordinates someone that is very similar to you and theyget a volunteer to give you a ring and a chat. I have spoken to my lady twice now she had a 3rd anniversary yesterday she has given me a lot of hope. We have also had some laughs. I know this might not help everyone but for me its been so helpful. Good luck to all the ladies going through treatment this week each time we are one step closer to this being over. xxxxxxxxxxxxxxxxxxxxxxxx

jhbee
Member

Re: Anyone starting chemo August 2015?

Hi Tania,

 

I agree it's best not to do internet/ google searches on the subject as you tend to find more negative experiences. It's hard I know, I have a 10 year old and a 6 year old and things play on my mind as I'm sure they do for everyone. I think chemo itself gets you down so I hope that things will get easier for you. I got a lovely card from the sister of a colleague who let me know that she had been through a very aggressive form of breast cancer. She had a mastectomy and chemo. That was 18 years ago.

 

I've just had confirmed my first times for Tax - I had assumed it was every 3 weeks like FEC but it's every 2 weeks, 

I know some of you are having it weekly too, which are you having Tania? Just wondering whether I should be asking for weekly (was really sick the last 2 rounds of EC!)

 

Hope everyone's doing ok today,

 

Jhbeex

Tania786
Member

Re: Anyone starting chemo August 2015?

Hi Sarah and Debs, thank you so much for your msgs. Feeling a bit better after reading them.
With regards to T, Debs. I didn't feel sick abd actually felt fine for a couple of days after the cycle but then day 3 or 4 started aches and pains which were quiet bad and i felt that the paracetamol and ibuprofen didn't help. I'm hoping the ocnco prescribe something stronger for my next cycle.

Good luck!
Debs30
Member

Re: Anyone starting chemo August 2015?

Hi Ladies

 

Tania , I know it's hard but I avoid reading anything at all if I can .I just use this forum with our board and don't even read the other boards .. I cope with going through this journey almost blind to a certain degree, just being told what I am having and when and avoid all statistics. Everyone is different and I may feel the need later on to ask more questions but for now I find ignorance is my way of coping . I am sorry you have had a rough time with your T, I am dreading mine on the 20th but it's just the unknown. Xxx

 

Sarah, I am pleased you are finding the T not too bad , I am still suffering with the nausea and have become more of a hermit after each Fec. I really must try and leave the house more when I start to feel better !!!

 

Hope all ladies are ok xxxxx

 

Debs

Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Hi ladies I'm sorry you have had a terrible time tania. Don't read things I've learnt not to as everyone is different. I've scared myself a lot over the last year with all that people can say and I'm sure these cases are very rare or about a certain person. You should be ok for Christmas Lisa. I was quite hyper on the 3rd day and had a lovely day at home wrapping presents I did a bit of housework. So hopefully you will be fine don't over do it. The next day I slept a lot and I was wiped out I had muscle twinges but a couple of pain killers sorted that out. So be prepared to rest Boxing Day. I know it's hard to gauge as none if us know what each other's tolerances are. I've had no nausea on this one which I know a lot of you will welcome. I have also moisturised a lot and as yet I've had no nail or feet problems. I would say listen to your body if something doesn't feel right then ring your emergency number. I had a low day yesterday as I feel caged sometimes and want to go back to my old life and getting very envious of my friends ringing me about what they are doing and how they are doing normal things. I had a lot of anxiety about T and it wasn't as bad as I thought it would be and I wish it could be the same for you. Sermon over and I hope this helps and I haven't waffled on too much. Big hugs ladies xxxxx
Tania786
Member

Re: Anyone starting chemo August 2015?

Hi ladies, hope you're all doing fine.

I had my first T on 21 Oct and the se started from day 3. Really bad muscle/joints pain. A few days later I had a high temp so went to hospital wbc were low, nutrophils were low too. I was only discharged from the hospital on Friday. It was a horrible week or so. I'm feeling better now.

My next cycle is next Weds and having the port done same day.

Since yesterday I'm feeling a bit down... I read something on the internet where someone says people with triple negative cancer only live for 18months! I know i shouldn't have read it and everyone's situation is different but this is stuck to my head and am so worried and couldn't sleep. I'm planning to ask my onco about survival rate etc once my chemo has finished. Sorry if i sound silly i just wanted to share my worry with all you ladies. I have two kids 7 and 12 and i worry for them.
lisajane7878
Member

Re: Anyone starting chemo August 2015?

How long has that taken to kick in Sarah? Just my last one is 23rd dec and I'm hoping for the kids sake it's a few days after Christmas to take affect xxx
Bibi44
Member

Re: Anyone starting chemo August 2015?

Hi Sarah Sorry to hear the T caught up with you . . You seemed to be doing so well. Hope today goes well. xx

Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Morning ladies. The T kicked in yesterday. I spent the day in bed. I have had a few twinges but took some painkillerers. It's different to FEC. I just wanted to sleep and had no energy.but no nausea. You still have to do the injections debs 😞 I hate them! Sorry to hear this round has wiped you out. The steroid effect doesn't seem so bad on this. Hope you all had a good weekend big hugs xxxxxxxxx
Debs30
Member

Re: Anyone starting chemo August 2015?

Hi Ladies

 

I hope you all had a good weekend. This 4h Fec totally wiped me out yesterday , slept on and off nearly all day. Nausea seems to be a little better but energy levels at 0 . 

 

How are you doing Sarah with your T ? , so far reading your posts I hope my first one on the 20th follows the same path . It would be nice to escape this nausea , it is doable but when it disappears it is wonderful . 

 

Another sofa day day planned for me today , think I need to try and build up some energy levels.

 

finding my injections for WBC hurt quite a lot too. Think my tummy is bit sore. Do we have these with the T Sarah, I forgot to ask ?.

 

Debsxxxx

 

bravescholar
Member

Re: Anyone starting chemo August 2015?

That's good to hear, Sarah. I was whacked on Friday after Wednesday's chemo but am having a good weekend. xx

Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Morning ladies hope you are all ok? I'm doing ok. I'm having a few twinges. But ok. No nausea and the steroids don't seem to be too bad. Teeth feel a bit sensitive but can eat ok. I hope this continues. How are you doing Richelle and debs? I hope I haven't spoken too soon big hugs to you all xxxxxxxx
bravescholar
Member

Re: Anyone starting chemo August 2015?

Pain in nails from last session gone now, thanks Bibi. Let's see how next week goes.x
Debs30
Member

Re: Anyone starting chemo August 2015?

Hi Sarah

 

How are you doing on day 4 post T ? . Hope the Se are manageable if you have experienced any , even better if not . 

 

Hope all ladies are having a good weekend . Another sofa day for me , bit of nausea and feel bit wiped out 

 

Debsxxxxx

lisajane7878
Member

Re: Anyone starting chemo August 2015?

Hi I'm another chemo first before op but only having the 6. Had the 3 Fec now and moving into 2 next then have herceptin with the 5th xx
Bibi44
Member

Re: Anyone starting chemo August 2015?

Thanks for sharing that Richelle. Very interesting. A friend I met during our 2 x operations told me last week that she has recently been feeling really down. She also has Survivor Syndrome, in that she feels guilty because she didn't need chemo/radio & the rest of us did. I'm a bit worried about her because she lives alone & has been waking up crying at 4am. I will print that out & give it to her on Tuesday. I've got her into our cancer help centre for counselling & we are going to meet up more frequently for walks. I'm not sure what else I can do, but what I found really interesting about your article was to be careful about what you say . . avoid platitudes, which sort of add nothing. Thanks.

 

Brave how are your nails? Meant to say to you that my chemo nurse said you can wear black cotton gloves for 24 hours if you don't want to paint your nails black. Might look a bit mad, but if it saves them getting worse could be worth a try. I have ordered some (1.99 on Amazon)  because I want to keep oiling them up & can't do that if I paint them. x

Lisalouw
Member

Re: Anyone starting chemo August 2015?

Thanks richelle, I've saved it in my iBooks and I'll read when I'm at that stage , it looks really interesting , I don't get much time to do any research with an active 5 yr old so any info anyone has is greatly appreciated xxx
bravescholar
Member

Re: Anyone starting chemo August 2015?

Thanks, Richelle. I have just read this through. What a great essay. Thanks for posting.xx
PeggyCat
Community Champion

Re: Anyone starting chemo August 2015?

Thank you for posting that link Richelle. I'll bookmark it for future reference as think it will come in useful in the months to come.

Richelle
Member

Re: Anyone starting chemo August 2015?

Not sure if anyone has read a document by Dr Peter Harvey a consultant clinical psychologist entitled after the treatment finishes - then what?

 

I have just just had it sent to me by a support nurse and found it a really useful resource both personally and for family to read.

 

one part in particular really resonated.....bottom of page two in which he states........

 

Once heard, the diagnosis of cancer can never be forgotten. Whatever your prognosis, whatever your hopes, your personality, the second that you know you have cancer your life changes irrevocably. For many people, their sense of security and safety is undermined, their hopes for the future compromised, and their trust in the world denied. 

 

He goes on to say the recovery involved three stages: recuperation, convalescence and rehabilitation with the first stage starting after our active treatment has ended.

 

The end goal being to incorporate and assimilate our  experience into our lives and self, not pretending it didn't happen, or denying its importance or power.

 

I have attached the link and hope some of you find it useful xxx

 

http://www.cancercounselling.org.uk/After%20the%20Treatment%20-%20Peter%20Harvey.pdf 

 

 

 

 

Lisalouw
Member

Re: Anyone starting chemo August 2015?

Meant to say at end , hope everyone ok and not suffering too much , lots of virtual hugs xxx
Lisalouw
Member

Re: Anyone starting chemo August 2015?

Hello ladies , just popping in , I'm on day 8 of 4 th TAC , so I've been poorly for most of the time , it really knocks me out , and I get so irritable , I'm not sure if that's the steroids or the chemo , I'll have to ask my onc , just starting to come round abit now , but now my gums are red and inflamed on one side and it's my wk when my bloods drop , so I'm hoping it doesn't lead to an infection , my temperature is ok though so guess I'll just have to keep an eye on things , I tend to go neutropenic , I'm on the injections to boost my white blood cells , is anyone else on those and do you get any side effects ?
I didn't see the photos bibbi , I think I'll look them up , or maybe they will make me irritated again ha , is everyone doing anything for halloween , my sister has come to stop from Scarbrough which is great as my 5 yr old is expecting doing lots of spooky stuff today , I do feel guilty that I can't do what I used to do with him at the moment 😞
jhbee
Member

Re: Anyone starting chemo August 2015?

Hi Debs,

 

Your weekend sounds nice and relaxed - I'll have to do some Halloween stuff with the kids but not too hectic!

Sarah fingers crossed you keep on coping so well with the Tax,

 

Good weekend to all,

 

Jhbee x

Sarahd-1
Member

Re: Anyone starting chemo August 2015?

Hi everyone is ok. I'm on day 3 of T and am praying it stays like this. I hope I can come on here tomorrow and tell you I feel the same. I keep getting the odd little twinge thinking oh god here we go but it hasn't. I'm drinking lots of liquids and I have had next to no nausea at all. I have taken emend but normally have to take the extra I took an extra one last night just in case in kicked in. Hope you all have a lovely weekend big hugs xxxxxxx
Debs30
Member

Re: Anyone starting chemo August 2015?

Hi Jhbee

 

My first T is the 20th November , have already been prescribed Tramadol for the Se but will try and cope on Paracetamol as allergic to Ibubrofen . I will follow your progress on T too . Not sure on my end date as I would be due one on New Year's Day so think that May extend my date somewhat. 

 

Hope all ladies have a good weekend, mine will consist of my comfy sofa and Tv .xxxxxx

 

Debs

Bibi44
Member

Re: Anyone starting chemo August 2015?

Brave I wrote a comment in along those lines. I don't know if they'll print it. JHBee I start tax a week on Mon & my Herceptin next Fri. Good weekend allx

bravescholar
Member

Re: Anyone starting chemo August 2015?

I've just seen those Evening Standard photos online. They're pretty gruesome, huh? I'm in two minds.That clearly is reality for some women but you'd really hope those mastectomies were done a good while ago, wouldn't you? Yes, Bibi, totally agreee it gives a one-sided (no pun intended) view. You're absolutely right they should also have photos of some nice reconstructions.

jhbee
Member

Re: Anyone starting chemo August 2015?

Hi Bibi,

 

I agree would have been great to have finished with chemo this year, oh well..I'm wondering if headaches are due to continuing with the cold cap (though I hear you can still get headaches if you don't use one).

Well Ior the 16th 'll up my water intake, ask for Emend again, arm myself with plenty of painkillers and hope not to dip down as much as my last EC! When do you start your Tax? (I think you said you'll be doing weekly?)

 

Jx

Bibi44
Member

Re: Anyone starting chemo August 2015?

JHB glad you're surviving & sorry to hear you will be joining us in the January tail . . I would so much have liked to be done by NY to start 2016 with a clean slate. Still, there was always going to be rads for me too. I found drinking lots of water the day of chemo got rid of that horrible headache ( I had it for 10 days with the first one & had to resort to co-codamol because ibuprofen/paracetamol wouldn't shift it). I did a litre and a half before chemo & same after before sick feeling set in. Yep, did spend all day running to the lav! x

jhbee
Member

Re: Anyone starting chemo August 2015?

Hi everyone, 

 

Hope you're all feeling as well as poss.

 

Debs I started out on 4 x EC and they have now added 4 x Taxol. EC (though everyone else seems to have FEC?) has made me really nauseous with headaches but am feeling myself again after 10 days! Am hoping that the Tax won't be as hard hitting with sickness but I know it can have some other interesting SE up it's sleeve (might be trying the dark polish after hearing how painful your nails have been Brave)! My 1st Tax is on 16th Nov so I think last will be Jan 18th..

 

Have a good weekend all.

 

Jx

Bibi44
Member

Re: Anyone starting chemo August 2015?

Good post Brave. I am in complete agreement. Poor Victoria then, if she is to undergo chemo like the rest of us. I saw her on TV yesterday & she was back at work  looking very chirpy. Good for her. 

Richelle glad to hear you're ok. xx