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December 2016 Starters

Cookiepuss
Member

Re: December 2016 Starters

Rooner - before I lost my hair I thought I would wear the wig all the time, even at home.  However as the days have gone by since taking the plunge I tend to just wear Cozy Caps round the house.  I have even ventured out of the house wearing just a hat of some sort (usually a nice outdoors type one that I would wear normally). 

 

When I went into work last week I did wear the wig - although some of the girls I work with know I have lost my hair, I didn't want everyone to know.  Certainly if I was going out for a meal or meeting friends I would wear my wig as I just don't feel confident enough to go out without it on and would feel a bit silly wearing a hat in a restaurant.  It's not that my friends would mind but I just don't want people staring at me.

 

I tend to find it is a bit itchy when I first put it on but after about 10 minutes it settles down and feels OK and then I sort of forget I am wearing it.  I did buy a couple of wig caps which are like 20 denier stocking/tights material which does provide a protective layer between my scalp and the wig which has helped.  I jsut hope they don't slip otherwise I would look like a bank robber.Smiley LOL

Andreaj
Member

Re: December 2016 Starters

Anyone else really struggle with fasting pre chemo.

 

I seem to get really weak and ill after just about 30 hours and I am keeping my fluids up and resting but I feel rotten and this happened last time as well, I have about 15 hours to do before my chemo now and have given in and eaten a hard boiled egg as I feel so bad and OH says I look so ill they may not do chemo!

 

Has anyone else had this trouble?

thanks Andrea X

WMJ
Member

Re: December 2016 Starters

Hope you are feeling brighter Snail888. Mothers hey, well of a certain generation! I think yours should pal up with mine. 

Glad your back with us running girl 53 and starting to feel like your 'old' self 🙂 I enjoyed a good walk yesterday and hope your venture out went well.

Hope you are starting to feel better Robinj. You have certainly been through it. X

Well I feel as though it is lunchtime already, as I have been awake since 2.20am. I managed to creep down without disturbing my OH around 3.30am. So I will be shattered today and it will feel like a long day no doubt. 

However our son & his partner are coming for lunch today, so looking forward to that, hope I can stay awake. 

Hope everyone else doing okay. Take care lovely ladies & have a good day.  XX

 

Snail888
Member

Re: December 2016 Starters

I take lanzaprosole. Got it after chemo 1. Now intake it day of chemo.and for 5 days afterwards. The gcsf injections can flare up indigestion but the loratadine stopped all the side effects and it's a bit easier on the system for me than a lanzaprosole.
Word of warning if you do take lanzaprosole or similar don't panic I'd you.eat beetroot! Within an hour bright red wee and as.ot was the day after chemo I did panic a little bit thinking bladder ndection!! Xx
Running girl 53
Member

Re: December 2016 Starters

Thanks for advice on heartburn. Will ask Onc when i see him.
Just come back from my little trot in the woods. 3 1/4 miles. Chuffed with that. Enjoyed it.
Snail888
Member

Re: December 2016 Starters

Hi Rooner could advice for students of quick often tell mine they need some man up pills! Perhaps try the wig at home and get it cut. My hair is a mess so I have to clip it flat and Wear a hat. Not that I go out anyway xx
Rooner999
Member

Re: December 2016 Starters

A mixture of emotions and symptoms this week for everyone, it really is a roller coaster of uncertainty.  I always tell my students 'man up princess' and thats what I keep telling myself....doesn't always work though!

 

My main dilema this week is to wig or not.  I am out with the girls next Saturday and it was going to be my first attempt at wearing my wig but having tried it on last night it felt so false and uncomfortable i'm not sure I can do it; the bill came from the hospital last week and tempted to take it back!   We went for a pub lunch yesterday and I actually went bald which is something I never thought I would do but I actually felt comfortable so at the moment I am torn between wig or no wig for out occasions.  Not sure if I go out bald that I will be able to sit there all evening with confidence or have a melt down! 

 

They don't tell you about all these things other than the main side effects that you have to deal with..

Cookiepuss
Member

Re: December 2016 Starters

WMJ - thanks for the link; I'll have a read through that later.

 

Fiddlercrab - I had a baseline heart scan before the chemo started and they will do another one half way through.  The consultant explained everything to me and went through the results with me too.

 

Robin - definitely report your symptoms as they can change your sickness meds to find one that suits.  I get Emend plus the Demexathesone (steroid one) plus Granistron (not sure of spelling) as a back up.  They do make me very sleepy (can't stay awake past 7.30pm) but I would rather that than feel or be sick.

 

Snail - I am cross on your behalf for both the comments your Mum made and for your car being damaged so I am not surprised you are having a dammed good cry.  I think you need to just "let it go".  I was very emotional and teary earlier in the week - it was a good job I was working from home as I just kept having a cry.

 

Runninggirl - same here, Rich Tea are boring but great when you just need something to take the edge off that sickness feeling.  I too have the craving for carbs in the first week.  With regard to the burning in your stomach, have you asked for extra anti-acid (I get Lanzaprazole)?  They only generally get prescribed for 3 days but I found that if I took them for 7 it sorted out the problem and then I am fine for the remaining time.  My oncologist said it would be fine to take them for the duration of the chemo so might be worth asking for extra supplies.

 

I am missing my training - I would normally have done a session this morning but know that I am not up to that intensity but am trying to do a half hour walk every day although failed miserably for the last 3 days.  Am going for a long walk today.

 

And can I ask for some sympathy - our boiler has packed up so we have no heating.  We have rounded up various electric heaters but it's just not the same and it feels a bit grim.  The new one won't be installed until 16 Jan so a week of me being cold = miserable and grumpy!

 

 

Running girl 53
Member

Re: December 2016 Starters

Just looked at message
That's what happens when i go off radar fir a few days! Lol.
Running girl 53
Member

Re: December 2016 Starters

Hi All,
WMJ so glad you have reassurance following your scan results.
We are all on such a roller coaster of emotions. If there is one thing i have learnt from my experiences so far is that we should all be really proud of ourselves. This is without doubt the toughest experience i've ever had, the fears, the new knowledge we gain, the opening up of a world that none of us thought we were ever going to be involved in. It's huge. However we are all fighting and clearly determined. Everyone's posts scream this loud and clear. So well done to all of us for our continued determinedness to grit our teeth and just get all this s**t over with and get on with our lives!
Snail888. Congratulations on your wedding, when is it? Hope you feeling stronger today. Unless you have been through this experience yourself no one really understands how it feels and how vulnerable we feel at times. Your mom's comment comes from her worry for you but she wouldn't realise how it would spark fears in yourself. I have found my understanding of the reality of all this quite painful. As i lost my younger sister to breast cancer almost 12mths ago, really knowing how she felt has been distressing at times. I know i did all i could and treasure my memories of spending time with her and giving her my support but i wish i could have truly understood how she felt. But this us just the way it is and it only makes me more proud of her bravery and determination. Thanks for asking after me Snail and SALowery. I am fine, I have been back at work full time since tuesday so tired when back home , hense no posts. I have been reading everyones posts every evening though, just too tired to string a sentence together!
Robinj it does get better but i know exactly how you are feeling. My second fec knocked me about more than first and i was really feeling sorry for myself. I try and just eat what i fancy to ease the nausea. Dry biscuits, toast with butter, salted pretzels go down really well, cheddar biscuits and walnuts. I keep a packet of rich tea in bedroom and if i wake in the night and feel a little nauseous i nibble on a biscuit. Hubby has got used to hearing chrunching noises in the small hours! I find the week following i need carbs which goes against the grain as i dont like to have too many but you just need to eat what you can. 1 week on and my food choices are healthier again and i am finally feeling like me again. Still have a burning sensation in gullet not quite heartburn but funny feeling. Drinking milk and sucking on the odd rennie seems to help. It is hard when you are feeling low to imagine feeling better and i was like a bear with a sore head for more than a few days, made worse by the fact that i then felt angry with myself for my self pity. Such a tangle of emotions. I hope you are feeling better very soon.
Andreaj sorry you have been messed about it really doesn't help does it. Hope second treatment goes well and side effects minimal. X
Jackie48 i know what you mean about being surrounded by experts. I am close to quite a few ladies who have been down this road and wonderfully come out the other end well and fit and cancer free. They are a blessing with their honesty. Comments like "yes you will feel worse", "chemo is hard" , " i hated everyone at times too" weirdly are exactly what you need to hear as it normalises your feelings and makes you feel less crazy. I too have many comments about how short hair makes me look younger, i look so well, thet can't believe its a wig (trust me i think , try it on it feels like a scratchy rodent clinging to my head! ). What they dont know is i am fast becoming an expert on the no make up make up look. Highlighters and touche eclat are wonder tools. Any one interested look at this link for a tutorial ( actually pleasant to watch )
https://www.beautyandtheboutique.com
Well i am now going to don my running gear and go for a trot in the woods. Not expecting miracles and not worried how slow i am, i'll just be glad to be out there.
Wishing you all a peaceful , enjoyable weekend. Keep well. Xxx
Jacquie48
Member

Re: December 2016 Starters

Robinj, sorry to hear you're so sick. I've had this too, but not till 4-6 days afterwards. Do call them as they may be able to help. My team has adjusted my medication for the third time to try to ensure I'm not sick next time. Your doctors don't want you sick. Hope you feel better soon.
Andrea, sorry to hear you're not completely confident in your care. I have only seen the oncologist once, before I started chemo, and now I see the lead chemo nurse. Suspect this might be quite common.
Snail I am not surprised to hear you are emotional. What a thing to say to you!! I don't know why so many people, including our families, suddenly become medical experts as soon as we are diagnosed. Or why people think it acceptable to keep commenting on our appearance. If one more person says I look well or they like my (short, balding fast) hair I may punch them.
Hope you are all feeling better tomorrow ladies. Sending hugs xxx

Snail888
Member

Re: December 2016 Starters

Thought I was doing quite well on the don't get emotional stakes but lost it big time tonight. Firstly my mother telling me that chemo can't be working as I don't seem that unwell and surely you need to be ill to have it work.
Secondly my car has been damaged during its service and I just can't face arguing with them because I didn't notice when it was serviced probably because I'd just had chemo. So angry I've fired off a ton of emails to dealer and head office and now I'm going to look stupid and over emotional arrgghjhhhh. So sobbing into my cup of tea!
Andreaj
Member

Re: December 2016 Starters

Hi everyone just checking in again its been a while since I posted but Im keeping up with all your news and find it interesting and helpful.

 

Since I was put off my 2nd fec due to low white cell count I have been waiting 10 days to have 2nd round which is particularly frustrating as three of those days is due to lack of staff and the bank holiday!

 

Anyway just got the result of my bloods today and I can get my 2nd fec on Monday which is a releif I have had to fight to get gcsf injections but managed to get that sorted thank goodness.  

 

Not too happy with things at my hospital, the staff are lovely etc but I do feel there are gaps in care that are quite worrying and I feel I have had to fight to get what I need, as it is I havent seen my consultant at all yet I saw the registrar and she was fine but I do feel I want to see the consultant at some point so had to kick up a fuss to see someone and the only appt they could offer was three hours after my chemo which is less than ideal as last time I was very sicky just after and my OH cant be there but at least I got an appt.

 

Apparently the consultant was off for 3 weeks over xmas and new year and no cover which is one of the reasons I couldnt get the injections organised..sounds scary that there is no cover..but Im trying not to let this stuff worry me too much

 

ah well 2nd fec on Monday fingers crossed, at least I have my picc line in that is a blessing now it has settled down.

take care everyone

SALowery
Member

Re: December 2016 Starters

Robinj it will so get better believe me, make sure you write all symptoms down and how long they last so you can tell the oncologist when you see them and they will help you, stay strong 1 week on from
2nd round and I'm feeling pretty much myself again... big hugs xxx
Andreaj
Member

Re: December 2016 Starters

Hi everyone just checking in again its been a while since I posted but Im keeping up with all your news and find it interesting and helpful.

 

Since I was put off my 2nd fec due to low white cell count I have been waiting 10 days to have 2nd round which is particularly frustrating as three of those days is due to lack of staff and the bank holiday!

 

Anyway just got the result of my bloods today and I can get my 2nd fec on Monday which is a releif I have had to fight to get gcsf injections but managed to get that sorted thank goodness.  

 

Not too happy with things at my hospital, the staff are lovely etc but I do feel there are gaps in care that are quite worrying and I feel I have had to fight to get what I need, as it is I havent seen my consultant at all yet I saw the registrar and she was fine but I do feel I want to see the consultant at some point so had to kick up a fuss to see someone and the only appt they could offer was three hours after my chemo which is less than ideal as last time I was very sicky just after and my OH cant be there but at least I got an appt.

 

Apparently the consultant was off for 3 weeks over xmas and new year and no cover which is one of the reasons I couldnt get the injections organised..sounds scary that there is no cover..but Im trying not to let this stuff worry me too much

 

ah well 2nd fec on Monday fingers crossed, at least I have my picc line in that is a blessing now it has settled down.

take care everyone X Andrea X

fiddlercrab
Member

Re: December 2016 Starters

RobinJ - I was hospitalised with vomiting after FEC1, on a drip. It will get better, but you need to let them know and they will give you stronger anti sickness next time, no question. They do not want you vomiting. For me, the new meds mean that in round 2 I was mostly asleep for days 2-4, which is better than being sick, but I am a wreck from days 5-8 (worse than round 1). I am going to ask if there is anything more/different they can do for round 3 when I next see the oncologist.

Snail888
Member

Re: December 2016 Starters

What anti sickness did they give you. I definitely felt much worse round 1 with a headache for 2 weeks dizzy spells etc.
I drink a lot more fluids each round now and generally try to eat a little bit just after before going to bed for hours.
Are you feeling a bit better now? Xx
RobinJ
Member

Re: December 2016 Starters

I have had a terrible reaction to Fec dose one. Can't get out of bed. No appetite. Nausea and sickness. Please tell me it gets better? Had it on Wednesday so this is day 3. Thank you for any reassurance you can offer!
Snail888
Member

Re: December 2016 Starters

I asked the woman doing my heart scab to make a comment she wouldn't. It's very interesting though you can see your valves opening and closing! I worry about any tests for weeks before and after and I'm sure it doesn't help!
Is running girl OK? Hope so xx
fiddlercrab
Member

Re: December 2016 Starters

Cookiepuss - yes, weird dreams here too, specially on nights 5-7 after chemo. Is it the steroids?

 

Rooner - I sleep in a cotton hat, but the prickling seems to have stopped now, not sure if I am just used to having Velcro for hair or something has actually changed. The hat also keeps my head warm and stops my 8 year old freaking out about my baldness.

 

I read about fasting but get so grumpy when I am hungry. I guess I effectively fast afterwards because I spend most of the next 24 hours asleep so probably don't eat much. I wonder if it would help if I conciously didn't eat rather than eating or trying to eat when I don't really want to. Not sure I could do before though.

 

I've just got my appointment through for a heart scan next week, before the herceptin starts (with the T) in cycle 4. Although this is just a baseline scan, scanxiety-brain is obviously full of what-ifs. For goodness sake, surely they won't pick up an undiagnosed heart problem!

 

Got my onicolife drops too, and have rubbed some into my nails and put on a coat of 'hard as nails' because there was some in the drawer (how long has that been there?). Trying to get into habit of looking after them rather than cutting them short when they get irritatingly long.

 

Hope everyone is well and this cycle is treating you nicely.

WMJ
Member

Re: December 2016 Starters

FASTING INFO

https://www.scientificamerican.com/article/fasting-might-boost-chemo/

 

I have another one which I can't find at the moment.

SALowery
Member

Re: December 2016 Starters

Was thinking last night haven't heard from running girl for a while you ok?
Snail888
Member

Re: December 2016 Starters

My arm woke me up in the night. Almost like cramp but isn't. I wrapped it up in a blanket and have put a warmer on it today. Think it is something to do with the vein. Looking back when this vein was used before around this time I suddenly had bruising and a rash around the canula site. Lots of stretching and moving it about I think.
I sleep in a little cap to stop hair rubbing but if I had less I would have a hat on in bed because I'm always cold.!! Xx
Cookiepuss
Member

Re: December 2016 Starters

Snail - how's your arm today?  Mine sounds the same as yours - a deep pain from the crook of my elbow up to my shoulder, following the vein and also what looks like a burn mark by my wrist.  I think the cream is helping (although it smells horrible) and I am regularly stretching/moving my arm to ensure it doesn't reduce mobility and hopefully that will help too.

 

Lenny - thanks for the info re the PICC; I will discuss at my next pre-chemo check up and see what they think.

 

I too have been having very vivid and weird dreams.  Last night I dreamt I was going out and had horrible greasy hair - obviously my sub-conscious creeping through there!

 

Rooner - my head feels a bit prickly against the pillow, almost as if the remaining stubble is being pushed back into my scalp and it does feel a bit uncomfortable.  I sleep in a very light cotton cap at night which is quite comfortable otherwise.  I probably wouldn't bother but I have a cat that likes to groom my head in the early hours and it hurts when that raspy tongue gets going.

 

Lovely to hear you are going ahead with your weddding - something to focus on and look forward to. 

 

I've been reading up on hair products and the recommended ones seem to be Rogaine/Regaine (also known as Minoxidil).  There are apparently two strengths and women should use the lower strength one.  In addition, rubbing scalp with coconut or almond oil.  Biotin supplements seem to get a good write up.  I also heard that Nioxin shampoo was good but I think there are different regimes so need to look a bit more into that.

 

I don't seem to have any overwhelming reaction to the GCSF injection - I just have one injection the day after the chemo.  I feel very slightly achey in my legs but nothing that would prompt me to take any painkillers.  I just hope it is working and boosting those white blood cells.

 

Well I don't have a scientific background but I am doing lots of reading/research as is my OH and our conversations must sound quite high level to anyone listening ha ha. 

 

I am quite intrigued by the fasting that some of you are doing and just wondered if you had any links/information as to the benefits?  It wouldn't be for me as I would flake out due to lack of food but I am very interested in the background of it.

 

Hope everyone has a good day - I have just dug out some old exercise DVD's and may tackle one later to see how I get on.

 

 

Snail888
Member

Re: December 2016 Starters

Hiya
For the lotradine I took 1 10mg tablets 3 hours after injection on days 4 and 5. I wasn't going to but the node swelling and pains were.getti get worse and worse.
I didn't take one yesterday day 6nof injections because I didn't have any issues. Loratradine seems to have hit the issues on the head x
WMJ
Member

Re: December 2016 Starters

Morning all!

Saw my Onc yesterday and got the results from my MRI. Although they can't say with 100% certainty that the 'tiny' hotspot is not a nasty alien, she is happy with the result, so much happier than she was after the bone scan and and thinks it is most likely to be something of nothing. We felt so much better hearing that even though we didn't get a difinitive answer. We do have confidence in her, know she is an excellent Onc etc and so have to trust her judgement.  Both the BC Nurse and her reassured us that she sees this often and the more scans they do the more likely they are to find things we didnt know we had! I am likely to be checked again to ensure there hasn't been any changes. Thanks again to all those who have been sending me good wishes, it all helps. My goodness this forum is such a lifesave , not sure at times what I would do without you all. 

Btw.. also spoke to them about G-csf, I too will try lotoradine on the next cycle. Do you start it the day of the injection? Like you Snail888 I have a scientific background and am glad of it, even though it is rusty, regardless of the chemo brain. That is the main reason I do the 24hr pre & post chemo fasting, I read the trialsand understood how it could be beneficial. I also spoke to the Onc and incidently her colleague is doing research about fasting & excercise currently.  

What I did also discover yesterday is that some of the side effects I described can be due to the steroids and not G-csf. I am hoping not as if they are I will find out when I start the Docetaxel, as they up the steroids! However by then the lotoradine may have worked its magic!

Thanks agin lovely ladies, wishing you all a good day.

Hugs, XX

Snail888
Member

Re: December 2016 Starters

Nioxin is the big one that Kylie Minogue and other swore by. Then lush do a scrap and hair bar and of course there is alpocin and plantur caffeine shampoos. I think I will get my hair cut at the end if anything left and then treat it to.anything I can get my hands on xx
Rooner999
Member

Re: December 2016 Starters

Congrats snail that's an organisational achievement! Keep us posted if you hear of any products for the scalp 👍🏼
Alieck
Member

Re: December 2016 Starters

Thank you Claire. I am crossing my fingers and hoping that I don't lose too much and can go back go it. I think I could cope with the fact that if my hair was thinning using the cold cap then I had given it a go. it is the fact that they mucked up and it is a waiting game. it looks as if the side effects are coming on quicker even though they reduced the dose. We will have to wait and see. Alison xx

Snail888
Member

Re: December 2016 Starters

I pulled a wedding off in 7 days. After 19 years the thought of chemo was the thing that tipped me over the edge so I "agreed" to become a wife! Was good for us as the short notice meant only a handful of people and a fun affair.
From.what I've read hair starts growing as soon as fec finishes so you should have a covering.
Also there are lots of products that draw blood to the scalp which I'm dying to use as soon as this is over xx
SALowery
Member

Re: December 2016 Starters

Oh that's good to hear Rooner999

 

I'm trying not to let this take over every aspect of my life and taking control of what you can helps...

 

Thats great news about your wedding I'm sure what ever you choose will be stunning and what a great idea, it's surprising what we can beat and get around... and most importantly you will be well... 

 

Think I'm going to try sleeping in one of my hats tonight see if that helps!!! 

 

So so glad I have this site 

 

Sara xx

 

Rooner999
Member

Re: December 2016 Starters

I am the same as you SALowery, I don't do a mask.  I always wear a scarf normally so if I see a sniffy person I just put the scarf over my mout and I carry hand sanitiser gel with me at all times; to be fair I havent changed my routine at all, just been a bit more careful than usual.

 

Glad you said about the dreams, I have woken up having had dreams the last few nights and I never have dreams...very strange!!  What is everyone doing at night? My head was really cold and prickly (against the pillow) last night but when I put my snood on it was too tight and I couldnt sleep.

 

This second cycle has been much better than the first and my first was pretty good.  I have been so lucky this week with very few symptoms.  But I agree with you SALowery, loving my food but not the taste...everything taste of tuna although I did enjoy some mashed potato with cheese yeseterday. Roll on no 3 and half way through.

 

Just been emailing a lady about wedding tiaras; wasnt relishing the thought of a wig or being a bald bride in August and she has sent me some lovely full garland ideas so that has really cheered me up and got my focus back on the wedding rather than should we postpone it. Have a good weekend all 🙂

SALowery
Member

Re: December 2016 Starters

Hi ladies, 

 

just started to feel back to normal ( what ever that is ) today so managed an half hour walk with the dogs, cold but felt so much better for some fresh air.... 

 

Alieck that's awful for you especially as that's the decision you decided to take, hoping it won't make a difference for you but fullly understand how you would feel...

 

I've been starving the last couple of days so eating what I want, taste not great but hey!!!

 

Finding all I seem to do is wee as drinking so much and finding my head freezing in the night so waking me up and also really vivid dreams!!!! 

 

Im also finding the hair not such a shock anymore either I'm a wiz at getting ready now... that being my biggest issue now doesn't seem that important anymore, just glad no 2 is done and on way to next one, mind you I'm looking forward to a little break before it all starts again...

 

I'minterested to hear you wear a mask snail888 I am just carrying on as normal but avoiding ill people and busy places but an booked to go out for coffee 2mrw with the girls I can't wait... Should I be more worried???? 

 

Chemo arm sore so I'll mention when I see the oncologist next week... 

 

Hope everyone else is coming through the other side and are comfy...

 

Worrying about my weight and all that will come back but at the mo stuff it!!!!! 

 

Love Sara xxxx

LennyGK
Member

Re: December 2016 Starters

Hi Cookiepuss - I had a picc line inserted before my 2nd round as my veins aren't great and only have one arm to use. It wasn't sore at all being put in. I just got a numbing injection beforehand like you would at the dentist. My chemo only took 30 mins with the picc line. A nurse comes out once a week to clean it and I wear a sleeve over it so it's not dangling about. It's no bother really and everyone has said it's good to have as it saves your veins. Hope this helps x

Snail888
Member

Re: December 2016 Starters

I'm today really feeling pain in .you arm. High up deep in the bicep and now have a red patch as if someone has poked the he sore bit and left a mark. Feels warm inside too. I had a lot of pain round 1 around the catheter site about 8 days in and they used this vein again this time.
They won't use my other arm because I've had nodes removed on that side. Anyone else with pain in veins?
Cookiepuss
Member

Re: December 2016 Starters

Alieck - hopefully if you cold cap from now on you will be ok, particularly as you say you have retained your hair after the first cycle whereas the majority (myself included) had lost most by the third week. Fingers crossed!

I popped to see my chemo nurse today as my arm has gone very sore and stiff despite me regularly moving it around and I'm struggling to extend it. I really don't want another FEC going through it as I'm worried I will lose flexibility but clearly the vein has burnt out. I've got some Huidroid cream which smells terrible but will follow instructions.

I'm going to discuss with my oncologist next week - the options are to have a port which I don't fancy as it's done under a GA or they can use my other arm for the last FEC on the basis that the T is not as hard on veins and they can push through more slowly to help.

Has anyone else had a port fitted?
Snail888
Member

Re: December 2016 Starters

Wmj interestingly no one lists the lymph nodes as a side effect but mine have been by far the worst. Puriton is a different drug so probably doesn't do as well as the loratrdine (sp). I am amazed at the reduction in side effects. After round 2 I could hardly breath for 4 hours after injection because my sternum was so sore. I couldn't lie on my sides either. All that has gone and the swollen lymph in the back of my neck have gone.
I'm a bit concerned about the NHS and this drug. At my last chemo they gave every person a box of injections at least 2 people really had not got a clue (very old and frail) and they were told to just I jest them. There can be several allergic reactions and non of this was discussed with the patients.
I'm glad I'm a scientist with an enquiring mind !
Xx
claire36
Member

Re: December 2016 Starters

Hi everyone
I seem to be more of a lurker than a poster but decided that needs to change as can see there is so much lovely support and understanding on here. Glad those of you who had no 2 last week are on the up again. I had FEC 2 yesterday and after a horrible night don't feel too bad this morning but it's early days indeed. I fasted again so am absolutely ravenous and trying to inhale delicious toast and marmalade...Already planning my lunch!
Alieck I am cold capping and it wasn't set up this time and noone we seemed to know I was having it They did eventually find one but I wanted to reassure you that I have thinned quite a lot in the last few days so if you haven't lost any hair yet that is a good sign and might mean your drugs are not as harsh on the hair.
Hope today is a good day
Claire x

WMJ
Member

Re: December 2016 Starters

Thanks Snail888 for posting the link, it  makes interesting reading and absolute sense. 

I am seeing my Onc today and as the pain after G-csf is the worst symptom I have I will discuss using loratadine with her. I did try piriton this time but started to use it once I had the pain and although the symtoms were no way as severe as during C1, when I was in absolute agony for about 36 hours.  The issue then was not knowing how long it would last!  I still had pain this time, sore throat, swollen glands and a raised red rash, although that didn't cause much irritation but is also a symptom associated with G-csf.  I think the pain was there longer but less severe, however I knew it would pass based upon C1 which certainly helped.

X

Jacquie48
Member

Re: December 2016 Starters

Thank you! Much appreciated x
Snail888
Member

Re: December 2016 Starters

Hi jaquie this is a link to a published research paper on the use of anti histamine for gcsf symptoms
https://www.ncbi.nlm.nih.gov/pubmed/24664474

Might be best to just give them the link!
Xx
Jacquie48
Member

Re: December 2016 Starters

Hi ladies, been reading with interest! I'm finally really on the up again. I saw the lead chemo nurse today and must say that I may have been unfair in my earlier judgement. He couldn't have been more helpful. I went in gritting my teeth for a fight and there was no need. I came home with a bag of stuff ready for next time and he said he'll talk to the oncologist also to make sure I'm properly supported when I switch to Taxotere. I have lost another 2kg in less than 2 weeks, making 5kg in 4 weeks and they are anxious to ensure this doesn't keep happening. I envy those of you who want to eat all the time. That's usually me! It's great to have ladies here that are further along too. I asked again about using Loratidine and he said he'd discussed it with the oncologist after I mentioned it and they are happy for me to use it and also to let them have any info about its use in the US that I have. So I'll see if I can find anything to print for them. Maybe it will help future patients. I hope my awful moans haven't frightened those just starting. I think I've just been unlucky as many people are nowhere near as sick as I am.
Thanks again for being here. Xx
Rooner999
Member

Re: December 2016 Starters

I had bad bone pain after GCSF first round but have been taking Tesco own lotoradine (hay fever stuff) this time and so far minor pain
Snail888
Member

Re: December 2016 Starters

Clarityn or even cheaper loratradine is a God send. I've take it for.2.days and had none of the pains or swollen glands that the gcsf gave me before. Much better than sting pain killers!
WMJ
Member

Re: December 2016 Starters

Glad you are finally underway Robinj, but sorry to hear you are feeling rough. It will pass, problem is on the first round you are never sure how long things are going to last or what to expect. My advice is to keep a diary of symptoms, medication you take etc and then on cycle 2 you can check back. I think it really helps. take care  and keep posting. Hugs. X

Alieck
Member

Re: December 2016 Starters

Hi cookiepuss, someone did mention taking Claritin with GCSF injections as it helps with the side effects. Asked today in chemo unit and they said it was ok to take. Good luck. xx
Snail888
Member

Re: December 2016 Starters

Stick with the cold cap no matter how thin the hair gets. My friend probably lost 70 % of her hair but was glad she carried on with the cap. Xx
Alieck
Member

Re: December 2016 Starters

Thank you snail888. I still can't get over it. I will just have to wait and see but have a feeling from the look on their faces that they don't hold out much hope. xxx

Snail888
Member

Re: December 2016 Starters

Stay about Robin. This December group is lovely and chatty. Xx
RobinJ
Member

Re: December 2016 Starters

I finally got started today after my three week delay so I will post mainly in the January group although may lurk on here! Now I know what you have all been going through. Not nice. I just hope the anti sickness tablets start working. Feeling yuk.