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September 2016 starters

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Re: September 2016 starters

Hi lovely ladies

I put my update on my experience of the first T on the August thread by mistake if anyone wants to read it!

 

Feeling very weak and it seems to hit me worst in the afternoons.  Anyone else?

Trying to keep the end in sight - counting days.

Keep up all the interesting and supportive input......

Aine X

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Re: September 2016 starters

Just popping in here from the October thread to thank OldDawn for responding to one of my whining posts a while ago. Dawn, I was very grateful for your support & I'm so sorry I didn't respond earlier. I go through stages when I don't feel able to contribute to these threads. It's interesting that we have a similar work set up. I've more or less resigned myself to not working until treatment is over. I'm hitting the fatigue wall quite a bit now, so work really would be impossible. 

 

Ive done 3 ECs now and have one more to go before having my first Taxol on 21st December. I can see that some of you are having problems with the Taxol - so sorry for those of you who are. Im a little concerned about having the first Tax so close to Christmas as I know the Infusion Suite is closed until 28th December.  I'm hoping to avoid a Christmas trip to A&E!!

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Re: September 2016 starters

Hi Dawn, Hope everyone is feeling better than I am! Since I had chemo 4, the first docetaxel I feel as if I've been hit by a bus! No energy, really bad back pains, skin rash, sandpapered tongue- I won't go on! Had a temp spike last Friday (day 5) and had to go to A&E who were very good, kept me away from others etc. After multiple bloods tests, IV antibiotics etc they said my bloods were normal - hurrah so I wasn't admitted and sent home with antibiotics. Nurse who did my line care yesterday said I'd been a bit unlucky with SEs so now on codine which I hate as it gives you constipation, senna, laxido (guess what that's for!) rash cream, Difflam for mouth issues - a walking pharmacists. I do my last growth injection tomorrow so hoping to feel better by day 10. Or am I being over optimistic? Xx
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Re: September 2016 starters

Morning Everyone - nobody has posted for a couple of days. I hope it's because you are all well and too busy doing nice things to post on here. 😀

Member

Re: September 2016 starters

Hi lisad

Thank you. No radio to follow although I do have another surgery in Feb to put an implant in. However I am waiting for results of genetic testing which I've been told could be quite likely positive. But I'll cross that bridge if and when I come to it.
I'll have a look at the link
Thank you xx
Member

Re: September 2016 starters

Well done Sarah for finishing your chemo. womanhappy: Do you have radiation to follow?Woman Happy

 

Like you I have changed emotionally during chemo, I am very low and cry at the smallest of things and am have got quite moody and angry, I was never like this before treatment and of course this causes arguments at homeWoman Indifferent!

 

I saw my surgeon yesterday and she realises that I am really finding it hard to come to terms with changes to my body and my *new breast* and advised that I seek counselling  via phone the support helpline.

 

I found this on FB and was interesting to read  

 

https://www.breastcancercare.org.uk/about-us/news-blogs/news/top-tips-moving-forward-breast-cancer

Member

Re: September 2016 starters

Hi all

Hope everyone ok. Well chemo is done and dusted for me now! I'm so pleased although the europhia that everyone expected me to feel hasn't hit yet.
In fact I'm physically and mentally drained, which I expected. I have asked to be referred for counselling as so many ladies I've spoken to said they had been and found it helpful. Although as every day passes and I feel physically stronger, the emotional side is getting slightly easier.
I guess I just wanted to post to say it's so normal to feel like this at the end of treatment and last week I was very low but I am on the up now. My local Heals centre can refer patients for Nordic Walking sessions so I did my first one last week. Highly recommend it. Felt good to be in the fresh air strutting my stuff feeling good but probably looking a complete plonker as my coordination levels leave a lot to be desired! I also start Pilates next week so I'm looking forward to that too.
Good luck with he rest of your treatments ladies . I do look on here most days but don't always post so I am keeping up with all your journeys xx
Member

Re: September 2016 starters

Hi
Made it to Look good feel better today at maggies centre Monklands. (Even after chemo number 5 T on Monday . Reduced dose and steroid tail has made a big different to se this time round for the better ) I would recommend going , as lots of lovely products to take home. And lovely to meet ladies to chat to going through simmilar issues. It does make a difference. I feel my friends and family don't quite get the trauma of it all.
Vx

Member

Re: September 2016 starters

Ru - sorry to hear your oral thrush isn't responding to the medication you have been prescribed.

 

Sore mouth and oral thrush is likely to be a SE of the T (Docetaxel), although taking antibiotics could have made things worse than they would otherwise have been, because they kill off the 'good bacteria' that help you fight off infections. If the problem persists, I suggest you go back and ask for Fluconazole. I have been given a week's course of this to take every cycle as a preventative, and so far it has worked. 

 

It is too late to prevent the thrush now you've got it, but there are some things you can do to try and prevent it happening again once it has cleared up. I got a dry mouth around the middle of each FEC cycle, but managed to keep ulcers and thrush at bay by keeping up my fluids, using a dry mouth spray, maintaining good oral hygiene, and taking the Fluconazole from Day 10 as prescribed.

 

I also started to get a dry/ sore mouth, tongue and throat around a week into my first T cycle, despite doing all of the above - much worse than anything I had with the FEC. I contacted the nurse about it and was advised to start taking the Fluconazole early. I was also prescribed Difflam spray to help with the soreness (though to be honest I found Bonjela was more effective!!!). This seemed to work, because the soreness went away after about 3 or 4 days and didn't develop into anything worse. But I suspect it may have been a close run thing, so as soon as I get any dryness or soreness this cycle, I will take preventative action asap.

 

I hope that you manage to get what you need and that the thrush clears up soon, there's nothing more miserable than a sore mouth, particularly if it is on top of loss of appetite, because it makes you even less inclined to eat.

Ru
Member

Re: September 2016 starters

Hie Worcesterworrior having used the Nystan all day today I doubt it works no change at all. I now feel worse. I have Flu like symptoms. What next with this T. Like you Sweetbriar1
I also got my wig sorted yesterday my hair dresser styled it for me. I left it on the manicn head. Even having it washed I felt out of my depth when I wore it, too tight I am not sure 🤔 about getting used to.
Member

Re: September 2016 starters

Hi ladies - I tried to post just now but lost the message due to 'authentification failure' (this happens quite a lot and I am sick of it). It is now Day 2 of my second T (Docetaxel) cycle. Had chemo yesterday as planned, and Neulasta injection this afternoon. It's early days but so far the only SEs have been red face like RosieRo, occasional hot flushes, and like Ru, the return of the fatigue 'train' yesterday evening following the treatment 😕 🚂. It was probably made worse by poor sleep the previous night (hence post at silly time). Went to sleep but woke up just after midnight (hence post to Lisad at 12.30 ish). I expect further visits from the slow train as time goes on / possible unauthorized strike action / random changes to the timetable. Hugs and good luck to all of you suffering from c**p SEs from T at the moment, hang in there because for most of us things seem to get better during the second half of the cycle, so we can look forward to ferling more 'normal' again and getting out and about. 💙💚💛💜💐🌸🌹🍀
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Re: September 2016 starters

Hi sweetbriar,

 

With regards to the wig I found that it felt much more normal after I washed it. As advised by the hairdresser it became less 'bouncy' and lay a bit flatter. This is closer to what my previously very thick hair would have done. I'm plucking up the energy and courage to get mine styled a bit more. I do alternate with caps as well, particularly when I'm not going out. I've also invested in some hoodies so I can go bald and put the hood up when I feel cold. 

 

Hugs

 

Cathy

Member

Re: September 2016 starters

Hi ladies. This is day 8 of second T cycle and feel semi normal today. It's been a long week but today was much better. Dragged myself from my bed yesterday to see the wig lady. Settled for one bob type but it's stayed on the knob at the bottom of the stairs ever since I got home with it. Not sure it's for me but maybe I just need to get used to it. Bone pain has definitely been milder with T #2 but the heavy aching body with zero energy has been much worse. Anyhow, only 1 to go now. Stay strong and positive everyone. 🌸🌺🌼
Member

Re: September 2016 starters

Hi Ru,

 

Your cycle 1 of T sounds like a repeat of mine with exactly the same side effects including 3 days in hosital on iv antibotics. My Oncologist reduced the dosage from 100% to 75% for cycles 2 & 3 and reduced it again last Monday to 60% for cycle 4 due to painful and numb fingers, which can cause nerve damage. Nystan definitely helped clear oral Thrush on the 1st cycle, but wasn't as effective on 2 & 3, so had additional drugs - Fluconazole from Day 5 to sort it out.

 

Everybody is different, but Day 9/10 on Docetaxcel has definitely been the turning point for me and what a difference the 3rd week is, although tired and legs feel like lead, I get loads done in the last week. Hope you the next week and a half is good for you.

 

I now have 4 FEC to look forward to, I am really hoping they will be easier.

 

Hx  

 

 

Ru
Member

Re: September 2016 starters

Hello all hugs to each and every one of you. Thank you for all your posts. I had my First T on the 14, the first 2 days were ok. Day 3 onwards the train 🚂 could not start, it had a mechanical fault, I had trouble getting up, standing let alone bath. My joints were like jelly. On Day 4 I had high temperature 🤒 advised to go to hospital (imagine a&e on a Friday night). My veins decided not to give blood 😩😪Until what seemed like a lifetime. Given antibiotics which I thought was good, only to develop thrush and the runs. Have lost my sense of taste, my tongue hurts, despite using mouth wash twice a day 😬 given Nystan by GP hopefully it will help. Day 9 today the train is signaling to depart #standclear mind the closing doors.
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Re: September 2016 starters

Lisad - thank you for information about eyelash and eyebrow serum. It's pricey and also contains parabens (so do most things that my skin is able to tolerate), bit as I don't wear any make up, like you, Aine and Auntinanna, I think I'll try it while I've still got some eyebrows and eyelashes left in the hope I can hang onto them. I know what you mean about loss of appetite and drinks as well, but for me it seems to change over the cycle. On Day 5 of the last cycle I could only stand tea and water, but by the end of the cycle I could drink decaffeinated coffee, Horlicks and Sainsbury's no added sugar peach flavour barley water, which tastes less sweet than the Robinsons version. I can also tolerate Robinsons no added sugar apple and pear flavour though it is sweeter and not as nice. Interesting what you say about flat Coke, so I will get some small bottles of sugar free and give it a go.

Member

Re: September 2016 starters

Hi Aine - how did your first T go yesterday? Mine was ok but can really feel the difference from the FEC! Raging thirst - drinking so much water and nice chemo red face this morning! Think I got away lightly with SE of FEC -apart from the foot long blood clot that is! Had more or less usual high energy and just flopped for about two days. Expecting this to be a tougher ride but armed with good laxative, mouth treatments etc. Going to make my own body lotion as I can't find the perfect one so will let you know if I do and if it's any good. The website I like for products is beautydespitecancer.co.uk. Particularly beauty serum (only use tiny drops and don't need any moisturiser afterwards) nail oil (one drop does one hand - sometimes both!) and the lip balm. I also have the cleanse and moisturise cream (don't really like it as cleanser but fab night cream) and the red lipstick!! Two thirds of the way through chemo now thank goodness. Good luck to all. Xx
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Re: September 2016 starters

Been told today that my fatigue may be due to my low blood count so having a transfusion on Friday 

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Re: September 2016 starters

I love your train analogy Dawn. I described fatigue as giving a sumo wrestler a piggyback up Everest! Whatever it is horrible - much worse than the anaemia fatigue which is my only experience prior to this. Tomorrow is round 4 of 6 and even though I am dreading it because SE' s, I am feeling positive because I feel I'm on the homeward stretch.

Lisa, I was looking at that eyelash serum the other week because my eyebrows are very sparse and there are a few gaps in my eyelashes. Due to make up my friends tell me it isn't noticeable but I know. Do let us know how you get on with it in the next couple of weeks, I'm going to York in a couple of weeks for my birthday so I may invest if it's any good.

 

I try to ignore food warnings and cancer because they change so often. I especially don't pay attention to American advice, simply because their farming and food safety laws are so different from our own and don't necessarily apply in our country. I try to eat healthily but I seem to crave sweet drinks more than I ever did, but as so many of my usually preferred drinks either taste wrong or feel slimy I am not worrying overmuch. Hopefully my tastes will return to how they were by the end of January, which isn't far off. My last round of chemo is 4th Jan, so not too much longer to endure all of this.

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Re: September 2016 starters

Thanks for the update ladies.


I just bought this lash & brow serum with my points http://www.boots.com/en/No7-Fanomenal-Lash-Serum_1259511/ it’s got good reviews so will see if I hang on to themWoman Very Happy


Re cutting out sugar I was advised this but it is difficult although I have lost my appetite and not eating half as much sweet things. I try and eat 3 times a day and try and have my evening meal before 7.00pm!
I am struggling with drinks, just cannot find anything I really like. Never been a coke drinker, but finding drinking flat coke does seem to help.


Thanks re radiation update. As my last chemo session is on 5th January, I will expect to start my 15 rounds of radiation 2nd week of February.


Happy daysWoman Indifferent

 

Member

Re: September 2016 starters

Hi Old Dawn,

 

Your detailed train analogy made me laugh. Quite an achievement these days! Like you I'm trying to eat healthily and not worrying about it. Ginger biscuits come out when I'm feeling low. Had my replacement PICC Line fitted yesterday ready for the first of 6 Taxol tomorrow. Wish getting nearer the end made me feel better.

Member

Re: September 2016 starters

Hi Old Dawn,

 

Your detailed train analogy made me laugh. Quite an achievement these days! Like you I'm trying to eat healthily and not worrying about it. Ginger biscuits come out when I'm feeling low. Had my replacement PICC Ince fitted yesterday ready for the first of 6 Taxol tomorrow. Wish getting nearer the end made me feel better.

Member

Re: September 2016 starters

Hi ladies, it's my 5th treatment tomorrow (actually, today!), second T + Herceptin + Perjeta. I'm less worried because I know what to expect - there are unlikely to be any bad reactions from the treatment itself as there weren't any last time, and I'm also having only half the doses of the targeted biological drugs as before. CacieC - glad the almond oil is doing the trick with your scalp. E45 Itch Relief cream worked for me. We're all different, so it's often a case of trial and error to find out what works best for you. But by sharing information we can find out what products are out there and have worked for others, and try them out till we find the right one for us. Sweetbriar1 and Madmac22 - sorry to hear you are having terrible pains from the T AND the injections several days after your last treatments. A double whammy - really is a b****r isn't it? It just isn't fair. I have only had mild bone pain so far but am not feeling smug or complacent because I know it could get worse. on my last two cycles. Also sorry to hear about the fatigue, and hope it doesn't last too long after the treatment is over. The fatigue 'train' has only visited my station 🚇 a couple of times during the last cycle but on each occasion didn't last for more than a few hours. But as fatigue is cumulative and can linger even after the chemo is over, I expect more and longer visits from the 'train' in future. Fatigue is not just normal tiredness and no treatment is available except exercise when you feel up to it, without overdoing it. It is hard to describe the feeling to anyone who hasn't experienced it. I experienced a feeling of extreme lack of energy and heaviness, such that I couldn't move far and had to lie down / sleep, and it felt as though someone had tied lead weights to my arms and legs. It's definitely a slow/ stopping train 🚂 not an express train, rather like the clapped out old rolling stock (e.g. seats with dirty, worn upholstery and knackered springs) Centro used to use on the Cross-City line (Redditch-Birmingham-Lichfield) before it was electrified and they lost their franchise. I reckon they leased some of it from the Tyseley Railway Museum 😉 (lol). Lisad and Aine - hope your recent first T treatments went well. Can't say I've had any serious smell issues, I've just gone off the smell of one or two toiletries I wasn't mad keen on before anyway. Regarding food and drink, I am just trying to eat a healthy balanced diet as advised (except when I feel the sudden urge to make a cake lol). I have tried to ignore all the scare stories about things that can cause or contribute to the risk of BC generally / HER2+ and ER+ BC, until I have had chance to check out the evidence for myself. I think it could do is more harm than good to stress about what is and isn't 'safe' to eat and drink at a time when many of us are already stressed out enough about other things and are struggling to eat anything at all because of the chemotherapy SEs. I also personally think that if we cut out everything from our diet that could conceivably cause or contribute to the risk of BC, we'd all either starve or lose the will to live on the few things that nobody has (yet) claimed are causing or contributing to it. Food scare rant over. To change the subject, like yours, my eyebrows and eyelashes are hanging on but have thinned, so I am interested in trying the serum you mentioned in your posts. What is it called and where can you get it? I really should stop now and try to get back to sleep before the alarm goes off at 7.00.
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Re: September 2016 starters

Back again. Was feeling a little low tonight so I thought I'd check in and sure enough I'm feeling a bit more positive after reading your posts😊 And not so alone. Old dawn the almond oil worked... my scalp is not sore like it has been - it was a bit wierd at first putting it on, felt like a chip ....but my skin was a lot better after the bath, the rash on my neck is a little better too. Glad yours is shrinking. My T starts Fri... bones already hurt like hell...femur joined in today! I came home one night during cycle 1 to find a book 'how not to die' on my doorstep. It was well intentioned left by my mad professor friend. It was filled with research on how to combat breast cancer. My addication to marshmellows ( only had 3 tonight) is a definate nono but hey whos counting. Tried about 5 different flours including baking buck wheat biscuits and pastry.. not great...in fact quite crap really...most of the flours are still in cupboard🙄 I am using nuts and unprocessed seeds, brown flours and rice though.... bored of fruit and veg😝Still you eat less. Oh mums tip... ripe pears for constipation.... it could be coincidence but it seems to work for me. Had a super italian at lunch which is on the naughty list too( and the glass of red... eeek) but on the whole apart from the sugar craving I' m not doing too bad. Rule is have a varied diet each meal if you can... eating french style works for me too😁Sounds like some are on the T first... is that because you are on the trial?
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Re: September 2016 starters

Sweetbriar you might be different of course. I had bone pain with my first something chronic when I was having the injections. Told my onc & she said day 7 is when T is at its worse & that combined with g-csf injections equals a **bleep**storm in your body. Funnily enough it was never as bad the 2nd & 3rd time. The fatigue got worse but not the actual pain. Just niggles really. I tend to Potter around, maybe bake something, do a jigsaw then go lie on the bed. It's a proper routine!
Be glad to see the bloody back of it though xx
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Re: September 2016 starters

Hi atomicjojo, thanks for that and good luck for tomorrow. I'm obviously hoping I'll be feeling better by 10 days, the thought of another 5 days of this makes me feel like crying to be honest. Time will tell I suppose. Xx
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Re: September 2016 starters

Day 10 Sweetbriar! I plan around day 10. Anything beforehand, forget it! I describe it as having run a marathon then being hit by a bus. I do control it with paracetamol /ibuprofen although my onc offered me morphine but I don't think it's bad enough for that.
Tax has a lingering effect on me, I'm experiencing lots of aches/joint niggles way past day 10. Onc says these will improve about a month after T ends (last one tomorrow) but on the whole I think it could've been a lot worse.
I hope you settle in to it as good as it is possible with any chemo! Xx
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Re: September 2016 starters

Afternoon ladies, i've felt pretty smug going through this treatment (3 x FEC and 3 x T) feeling generally ok. I've managed to get out and about every day and felt like I had escaped some of the awful s/e some of you have had to experience. That was until 5 days ago when I had my second T. Since then I have been hit by that train some have described. I have zero energy and my limbs are like jelly. I haven't got dressed for 2 days which is unheard of. The bone pain isn't as bad as last time, it's just the extreme tiredness. I've not even managed to watch a whole Celebrity Get Me Out of Here for several days 😬!! I took my last injection earlier. Any ideas when I'll start feeling a bit normal again? My head wants to do things but my body is definitely saying 'forget it, stay in bed'! X
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Re: September 2016 starters - Half way threw

Hi Lisa
I am on 3 x FEC followed by 12 weekly sessions of Paclitaxel and my oncologist told me last week that I would have a three week break in between chemo finishing and radiotherapy starting- hope that this helps. xx

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Re: September 2016 starters - Half way threw

Hello all, 

 

i feel like I keep appearing and disappearing on this thread. I last posted when I finished my fourth (and last) session of TC on 2nd Nov. At that point I felt strangely flat and not nearly as happy as I thought I would be at having finished chemo. Thanks to those who posted encouraging and supportive messages and for the jokes which made me laugh-no mean feat!

 

Anyway, it turns out part of the reason I felt so rubbish was I had picked up a chest infection. So seven days in bed and then another 8 in hospital, four different  antibiotics and one hellish bout of thrush and I think I'm finally over it and feeling more like myself now. yay! 

 

Lisad, re your question about radiotherapy. My scan and planning meeting was while I was in hospital but they let me attend (after I threatened to sign myself out). So I'm all tattooed up and ready to start and my first actual treatment will be Monday 28th Nov. So in my case the time between finishing chemo and starting radiotherapy is 26 days. I'm getting 15 treatments and four boosts. Which means I will be finished before Christmas, I'm also due to start my hormone therapy this Wednesday. 

 

Still got got my eyebrows and eyelashes too but I haven't been using anything. All I need now is my hair to grow back....

 

hope me everyone is finding ways to manage their side effects, keep well folks. 

 

Anne

Member

Re: September 2016 starters

Maggie Moon - it is very difficult to lose weight if you aren't having bad nausea.  I did lose a lot of weight because I couldn't eat.  However I have struggled all my life to keep my weight down - I am 3 stone lighter now that at my worst!  I know I will put on quite a bit when this is all over. 

Prior to starting chemo I was losing weight on the advice of my mother who has a great figure and just turned 80 ( or seventy ten as she says!)

Don't eat after six in the evening.  That is the rule.  Eat a big breakfast and a healthy lunch and an early dinner.  Eat as much as you want at mealtimes.  I lost a stone over about 9 months with absolutely no effort.  This is what the French say is a healthy lifestyle!  Breakfast like a king, lunch like a prince and dine like a pauper.  I felt soo much better and my digestion became soo much better - no constipation!

 

However - in reality now we are just trying to get through each day.  I have found that eating a little every 2 hours and not worrying that I can't manage a good dinner works for me.  It gives me a wee energy boost too.

 

Are you drinking enough fluids?  I had to rotate orange squash, water, a hot drink and flat diet coke to keep me from giving up.  It is so hard to drink all this fluid when you don't feel like it but it temporarily staves off that feeling of hunger.  

 

Tesco do a great snack pack of dried fruit with a couple of chocolate covered ones to cheer you up!  I am taking them to the hospital tomorrow - it is going to be a long day!

 

My American friends sent me an email last year saying that cancerous cells feed on sugar so we should all be cutting down big time on sugary foods.  Also said cut way down on red meat and pork as it is full of hormones and additives to preserve it and eat more fish and chicken.   Also said eat a lot of lemons as they protect against cancerous cells.   Now I am just repeating this and can't prove it.  However I do think that sometimes Americans have a different slant on things and they may have some very good points

 

Have a comfortable week everyone!

 

x

Member

Re: September 2016 starters

Lisad the Clarityn was mentioned by Blueash a good while back and others have said they take it.

I think it is to reduce the bone and muscle pain on the T cycles.

I am taking it.  I felt very drowsy the first 3 days.  Today day 4 I am taking steroids as well and feel pretty good this evening.

 

I take eyelash/brow serum and same as you I have slightly thinned but still there.  Cost £26 but well worth it.

 

Really dreading my first T tomorrow. Wish it was over.

 

I have noticed that I have an extremely heightened sense of smell.  Anyone else noticed?

Did I say before I could smell my sister opening a bottle of wine 25 feet away?  I got a real whoosh of wine.  It was so funny.

 

x

Member

Re: September 2016 starters - Half way threw

sHi Ladies

 

Just cathcing up with whats been going on with you all and hope you are all doing ok.  Had my 4th chemo sesssion last Wednesday, last due on the 5th January.

 

Feeling so exhausted 4 days on, but hopefully will feel back to normal next week.

 

I still have my eyelashes and and eyebrows although they have got a lot thinner, I have been using an eyelash and brow serum on them every day so not sure if this is helping. Still have a light covering of hair as well. 

 

I see this was mentioned I have been taking Clarityn for the last 4 days

 - I seen this mentioned before but cannot remember what it is used for - is it to relieve

 muscle pain?

 

Notices on Life btter with Cancer they now offer a nail kit https://livebetterwith.com/products/strong-and-healthy-nail-kit/

 

Have been using the https://livebetterwith.com/products/onicolife-drops-for-chemo-nails/ and I am sure this has helped my nails.

 

Does anyone know what the timeframe is between finishing chemo and starting the course of radiation?  Hopefully there is a rest period of 4 -6 weeks before we start this.

 

Keep smiling - we are nearly over the worst partWoman Very Happy

 

xx 

Member

Re: September 2016 starters

Maggie Moon how are you after a few days on T?  I hope you are coping well.

 

Rosie Ro I think you are the same date as me - start T 21/11??  Good luck!

 

Ru how are you after the first week on T?  Hope the SE's are manageable.

 

I am going to have my first of 3 cycles of Docetaxyl (T) tomorrow....any last minute advice ladies?

I am getting very nervous.   I am taking the 4 steroid tablets today (11am and 3pm) and tomorrow morning again.  I have been taking Clarityn for the last 4 days.  Nothing else to do but rest and wait...

 

I looked up all your comments about your first T cycle and wrote them down in the wee notebook I keep.

 

Most of you recommend the alternating Paracetamol/Ibuprofen so I will start them tomorrow. 

 

OR IS THAT TOO EARLY?

 

I bought the Tena Lady pads for emergencies.  That was a first!  I have Rennies, Bonjela, Corsodyl, anti-nausea tablets from the FEC cycles that I didn't like taking, constipation tablets and plenty of food and wine!

 

I am going to ask for Difflam for sore mouths tomorrow.

 

Once more unto the breach dear friends...!!

 

Keep smiling.  As Maggie Thatcher said 'Don't look back. It's not where you're going'

 

Aine x

 

 

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Re: September 2016 starters

That is good news CacieC - makes you feel that it's all worthwhile. Let us know how you get on with the almond oil because quite a few of us have had problems with itchy scalp. I am aware that my 5cm lump has been responding to the treatment. but won't know exactly how much until the MRI scan has been done. I am due to have the scan om 29 November (not looking forward to it, it is more uncomfortable than having the chemo) but I won't know the results until 23 December, when I am due to see the surgeon again. I hope it is good news so close to Christmas. At the last consultation on 11 November the surgeon did a physical examination which confirmed that the lump is definitely shrinking, so he is still proposing to do a lumpectomy provided it has shrunk enough by the end of the chemotherapy. He said that he is also happy to do a mastectomy if I prefer. While there are no advantages in terms of survival rates, a mastectomy would reduce the risk of local recurrence and there is no need for radiotherapy. So I will have to weigh the pros and cons before I decide. The nurse also confirmed I will be starting the 12 month course of Herceptin injections in January following on from the chemo, but I haven't had an appointment for the first one yet. P.S. The MRI scan appointment had to be changed because the first date they sent me was...22 November, the same day as the next chemo (talk about the right hand not knowing what the left hand is doing!).
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Re: September 2016 starters

Day 15 FEC 3 half way there yipppeee! Good tips for the rash and tender head. I've used baby shampoo too but hubby noticed very dry on top... going to try smothering myself in almond oil and diving in the bath afterwards, just before a dose of strictly ✨ He suggested I shave the rest off, very fine and well quite frankly gone pale, potentially white 😱. However I think the thoughts below are good advice so I'm sticking with it. Best thing I did was have a very short crop before chemo... helped me accept the inevitable... have wig, wore once after hairdressers trimmed it for me... makes my head itch and it just doesnt feel right for me... wore a black scarf at halloween, got away with it 😁 Bones ache, marshmellows help 😳 Been in garden now collapsed on settee. The working girls are amazing....I'm exhausted after a couple of hours..but happy after a bit of marshmellow burnt off.saw Elaine Page at the wend... is that a wig it looks flippin good. Hope I get to that age with that much energy... inspirational. Good news I think my 10cm haggis has shrunk beyond recognition, its still there but I can imagine its small enough to operate on.... lets hope the T does its job and shrinks it even more.... it is crappie but its all worth it in the end..... even the constipation and piles subside eventually... dont they.... perhaps less marshmallows lol love to you all be strong be brave and be kind to yourself!
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Re: September 2016 starters

That's great news Dawn! Hope it heals up soon.
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Re: September 2016 starters

Hi Sweetbriar1, glad you have found a wig you like, and provided it is properly fitted and trimmed and is comfortable, you will feel a lot more confident wearing it when you go out. It must be me being awkward as usual, but I've never had a problem with my wig being too hot. For me but is the opposite, my head is usually frozen when wearing it outdoors! ❄ ⛄ Perhaps I just feel the cold more than most other people. I asked my husband (who is bald on top 😶) whether he feels the cold, and he doesn't indoors, but he does outside in the winter, so he always wears hats when he goes out. Fortunately, the new hats I have bought are big enough to wear on top of the wig, but I still feel a bit chilly outside even with a fleece hat on top (!). My head might be cold without hats, but there is at least some good news about the lumps on my right arm. I was afraid it might be blood clots, and that it could delay the next treatment, or that I would have to have a Hickman line put in. However, when I went to the hospital this morning to get it looked at, the nurse said it is not blood clots, but is almost certainly veinous phlebitis. This is likely to be a delayed (rare) effect of the FEC, and can be treated using anti-coagulant cream so it won't affect the next treatment. There is also no need for a Hickman line, as the next treatment can be given in the other arm. I have been given the cream, and have to apply it four times a day. Let's hope it does the trick.
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Re: September 2016 starters

Hi Sweetbriar1,

I found I lost weight on T during the first 9/10 days when I feel dreadul and then put it back on again during week 3 of the cycle. I too lose my tates buds and it takes longer for them to recover each cycle, now abut to start cycle 4 on Monday and hoping I will get them back in time for a big Birthday at the end of the cycle. I am impressed you can drinkk wine, I haven't been able to face any alcohol since starting chemo.

 

I have had a short bob wig since week 3 of chemo and have had so many lovely comments. The wigs look so realistic now, even my brother hadn’t a clue it wasn’t my real hair or my hairdresser when she came to shave my hair off and restyle my wig ! I do find my wig is hot to wear, sometimes I feel like I have a radiator on my head. I make sure if I am going out and expecting to be inside, I wear layers, so I can remove them if needbe. On a positive note, with a bobble hat, my head is lovely and warm when watching my eldest play rugby.

 

Good Luck with wig choice and fitting for next week.

Hx

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Re: September 2016 starters

Hi Maggiemoon
I've just had my second T cycle. I too have put on weight especially since starting the T. I managed to stay pretty much the same weight during the FEC part even though I was eating more dry biscuits (and other devil food!) to help with the nausea. Nausea hasn't been as much of an issue whilst on T and I'm eating fairly healthily, and still having a glass or two of wine, but I've now put on about 10lbs or so. Although I get a sore mouth at the beginning of my treatments and lose my taste buds for a while, it has had no affect on my appetite 😟. I'm just putting it down to not doing as much exercise. I'm not worrying about it though, I'll do that after my chemo has finished. On another subject, whilst killing time at the hosp this week I popped in to see the wig lady. I've always been against wearing a wig but was pleasantly surprised at how normal it made me feel. I normally have short hair but I tried on a slightly longer bob style instead. I've now booked a proper fitting for next week. Are they hot to wear? I get so many hot flushes I'm a bit worried I'll have to keep taking it off.
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Re: September 2016 starters

Thanks for advice RosieRo - I spoke to the nurse about the arm this afternoon, and have been told to go to the hospital tomorrow morning to get it checked. Let's hope it isn't anything serious and that they can use the other arm for the next treatment. MaggieMoon - I was eating well too during my FEC cycles once the nausea had stopped, but my first T affected my appetite for several days, and caused a sore mouth and throat at the same time, which also put me off eating. 😩 The worst days were Days 5 - 8, but the sore mouth had gone and my appetite had returned to a large extent by Day 10. 😀 Athough it's impossible to know whether it will affect you the same, you may find your appetite will be affected at some point during the cycle, in when case you could lose all the weight you have gain. 😊 But if your appetite returns later on on the cycle, you could put it all back on again... 😕
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Re: September 2016 starters

Thanks for advice RosieRo - I spoke to the nurse about the arm this afternoon, and have been told to go to the hospital tomorrow morning to get it checked. Let's hope it isn't anything serious and that they can use the other arm for the next treatment. MaggieMoon - I was eating well too during my FEC cycles once the nausea had stopped, but my first T affected my appetite for several days, and caused a sore mouth and throat at the same time, which also put me off eating. 😩 The worst days were Days 5 - 8, but the sore mouth had gone and my appetite had returned to a large extent by Day 10. 😀 Athough it's impossible to know whether it will affect you the same, you may find your appetite will be affected at some point during the cycle, in when case you could lose all the weight you have gain. 😊 But if your appetite returns later on on the cycle, you could put it all back on again... 😕
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Re: September 2016 starters

Hello.... I've been a bit quiet lately....Just plodding along..... I have had 3 Fecs and have my 1st T tomorrrow.... I notice that some of you have lost your appetites.... I seem to be the opposite.... I can't stop eating... Don't know if its just boredom or to comfort myself.... I have put on 6 pounds and I think its from eating and not the drugs! Is anyone else having similar problems? I was 'plump' to begin with and can't afforf to put on any more weight.... Any advice would be appreciated.... MaggieMoon x

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Re: September 2016 starters

Hi Dawn,

 

Sorry to hear about the lumps - hope you can get them checked out today - they may be blood clots. I had a problem with my left arm during chemo 2 as my veins appeared to be protesting. Three days later I had a painful arm and rang the chemo unit who said to come up immediately. I was seen and scanned and they found a 30cm blood clot. I had already asked for a PICC line and initally was told I couldn't have one due to the clot and I'd need a Hickman line, but then they agreed I could have it in my right arm as I'd only had sentinal nodes removed that side. So chemo 3 was easier with the line in. I'm giving myself daily Clexane injections to thin the blood. I thought these were to dissolve the clot but the Haemotologist said not - Clexane just stops the clot from getting any bigger  - its your body that slowly gets rid of the clot but it takes weeks. Mine is only just beginning to show signs of getting better after 4 weeks - I guess our bodies can't heal as fast with all this poison.

 

So i do my last clexane next Thursday which is good as I'll need to inject myself from day 3 of having my first T anyway on Monday. Not looking forward to the next phase - I've got used to the FEC cycle and found I have lots of energy during weeks 2 and 3 so that might all change. 

 

Good luck to everyone. 

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Re: September 2016 starters

Ru - forgot to say I hope your appetite will return soon. I found it improved around the middle of the cycle and I hope it does for you too. In the meantime, try soup if you can't manage anything else. It's important to keep eating if you can, even if you can only manage small amounts each day.

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Re: September 2016 starters

Thanks Ru - will contact nurse about the lumps incase it is something like See See's blood clots which they have to treat before the next treatment can go ahead (still not 100% sure that bleeding when going to loo has fully cleared either, although no sign of it last couple of days). Although it must be very frustrating for you See See - and I may be in the same boat - they will only delay or modify treatment if they have to, because of something more urgent. Hope your blood clots respond soon so your treatment is back on track.

Ru
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Re: September 2016 starters

Hie OldDawn63, I have the scale but I have decided not to use I know I have gained,my excuse is for now I am allowed😀.
I have gone off sweet things I am finding it hard to know what to eat.
I think you should get the lumps on your arm checked just to rule out anything. I have not had lumps like them but my arm at one point was very sore I had to be put on antibiotics. With this treatment our bodies go through a lot of changes.
Ru
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Re: September 2016 starters

Hi See See it will get better it might seem like a set back but it is important for the clot to be resolved first because they cause other issues which you do not need at the moment. Remain positive
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Re: September 2016 starters

Morning See See - haven't weighed myself lately (scales not working) but I suspect that now I am eating again I have now put back on all the weight I lost when I went off food. The Madeira cake I made on Monday to use up some eggs, butter and lemons (well that's my excuse) hasn't helped! 🍰 I also have some concerns about the condition of my right arm following the last treatment. Two mysterious hard, painful lumps have appeared under the skin near where cannulas went in for the last treatment and the last blood samples taken in the hospital last week (I don't have a PICC line). I first noticed them on Saturday (Day 12) and they show no signs of going away. Husband says not to worry, but I think I need to get them checked before the next treatment incase it is something that needs to be dealt with before they can put another cannula in that arm. Has anyone else had anything like this - and if so what caused it and did it need any treatment?

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Re: September 2016 starters

So docataxel seems to have put 10lbs on me in just one dose!!!

 

Now I've got a blood clot cause by my PICC line so I'm waiting to find out if it's safe to remove it and now I'm on more injections to try to dissolve the clot. My next chemo injection has been put back till there is somewhere to inject - one arm is completely swollen and I had surgery on the other side. 

 

Just when i though things were improving as the plan is for me to change to Taxol and have injections each week rather than continue with Docataxel.