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......
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!!
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. 😀
Well done Sarah for finishing your chemo. womanhappy: Do you have radiation to follow?
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 home!
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
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.
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.
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.
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.
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.
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 them
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.
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.
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.
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.
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!
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.
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
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 part
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'
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.
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
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.
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.
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.
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?
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.