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September 2016 starters

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Re: September 2016 starters

Evening Ru, your reaction to losing your hair is quite normal, I am sure we have all felt that way at some point. Although I was resigned to losing my hair when I was told I would, and wasn't too distressed when it started falling out because I had already organised my wig, the reality of losing more than 95% of my hair hit me afterwards. The first thing I noticed once the weather changed was how cold my head is without hair, particularly at night. Having come to terms with this issue, more recently I have started to worry about whether my hair will grow back again. I have been assured by the nurses that it will once the active treatment is over, but I can't help having this at the back if my mind and will probably continue to worry about it until I actually see signs of regrowth. The best way to deal with the cold is to get lots of sleep caps so you have something to wear in bed to keep your head warm and something to wear under hats and scarves. You may have to layer them I wear three sleep in bed, one on top of the other. Sleep caps are also good to wear under hats and scarves, to bulk out the outer headwear and prevent it from irritating your scalp as well as providing an extra layer of insulation. You also need to get some suitable wig liners to prevent your wig from irritating your scalp. It might be best to avoid wearing the wig until the spots have cleared up, just incase. Your spotty scalp is probably due to a combination of things such as the SEs of the chemotherapy which can make your scalp itchy, and the shaving, which may have irritated it. The best thing to do is contact your BCN or GP for advice on how to treat the spots to prevent infection and clear them up as soon as possible. They should be able to give you some suitable cream to dry them up. Hope that things have improved for everyone else who has been struggling with mouth problems, taste changes and lack of appetite since their last T treatment. It is weird how things seem to change constantly with Docetaxel and you never know how you are going to feel from one day to the next, whereas with FEC my experience was of gradual recovery and improvement, so that by the end of each cycle I was more or less functioning normally. Also hope everyone is managing to get out a bit instead of being stuck indoors all the time in front of the telly. I totally get what Aine and Worcester Warrior have said about this and am in danger of turning onto a couch potato, particularly during my 'middle week' However, I seem have fared better than Worcester Warrior in terms of pain so far, although I've only had one Docetaxel, so I shouldn't count my chickens. Most of the SEs I have had have been relatively minor/ annoying and some of them have subsided, for example my mouth isn't as sore any more and I have got some of my appetite back. I hope things have improved for ever else as well. Hugs to all.
Ru
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Re: September 2016 starters

Hello all thank you for jokes and all the updates they keep me going. I had cycle 4 yesterday the first of the T. No nausea so far, apart from toilet visits last night up to 5 of them. Like OldDawn63 I had to take Dexamethasone before and still on them till tomorrow. I do not seem to have cravings like I had with the fec, I gained a bit of weight not sure how much weight I will put on with T.
I have had to shave my hair off and this upset 😥me so much I felt like all my pride as a woman was stripped off me. It appears my scalp is spotty is this normal?
Not sore, smooth but spotty mind you I have never shaved my hair before so have no idea what a normal scalp should look like for someone undergoing treatment. should I be comparing it with those people who are not on chemotherapy? I have to get used to wigs which is new to me but I guess it is a phase which will pass. #remainingpositive.
Member

Re: September 2016 starters

Aine - thanks for jokes, light relief much appreciated (and needed). As Worcester Warrior says, with Docetaxel you have to take steroids (Dexamethasone) the day before the treatment, on the day and the day after. With the Docetaxel the purpose of the steroids is to help you cope with the side effects, which they actually did for me on the last cycle (my first Docetaxel), though who knows whether they will next time. With FEC, the steroids are supposed to help with nausea - lol 😅 as we've found, they don't, and frankly if that's the case it makes no difference whether you take them or not with the FEC (and my oncologist said as much). In practice I only took one of the b*****s after my third FEC treatment as I ended up in hospital (again). However, it is very important that you take them with the Docetaxel (my oncologist emphasised this) because it is to help you cope with potentially more severe side effects. You therefore have to take a higher dose of the steroids with Docetaxel than you do with FEC - I had to take 4 steroids twice a day. It is best to take one lot in the morning with your breakfast and the next lot not later than 4 pm - maybe with some of your Ritz crackers - so they don't keep you awake. The hospital should have already given the course of steroids to you so you can start taking them before the treatment. Hope this helps, they really should have explained this when you had your last treatment.
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Re: September 2016 starters

Aine, you have just described my last two weeks of cycle 3 on Docetaxcel. I am on Day 13 and have been much more dizzy, tired and nauseous than the first two cycles and I too eat Ritz crackers with Philadelphia light, but might just try the pate !

 

I take Dexamethasone 1 day before, the day of and the day after chemo. It makes me high and I get zero hours sleep on those days.

 

I have found the first 9/10 days of treatment really tough going with the remaining days good. I can’t wait to get cycle 4 out of the way and am really hoping the 4 cycles of FEC won’t be as bad. The worst thing for me is the 5 days of bone pain caused by the white cell booster injection. I didn’t manage it well on cycles 1 & 2 and decided I needed stronger pain killers, so they gave me pregabalin for cycle 3. It totally worked and I had no bone pain, however I was totally out of it for the 5 days, felt like I had drunk 2 or more bottles of wine each day, couldn’t walk straight and was slurring my words. The kids thought it was hilarious.

 

I too am a sociable person and all I want to do is stay in the house, rest and not see anyone. However, when someone does drag me out or I make an effort to go out somewhere, I feel so much better. I will be putting my feet up on Sunday night and watching I’m a Celebrity too, might just look away when they do the eating task.

 

Wishing you a good 3rd week ahead and best wishes for your next few cycles.

 

Hx

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Re: September 2016 starters

Aine

I love the jokes! Cheered me up reading them. Shirley sounds like she was a fun lady!
I'm 2 days post last EC. Yay! Chemo done and dusted for me. Everyone keeps saying how elated I must be but although I'm pleased, I feel so rubbish with the side effects that I can't quite bring myself to use the word elated just yet! Ask me next weekend and I'll be more inclined.
Hugs to those still facing chemo
Sarah x
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Re: September 2016 starters

I have to add that these were supplied by my Californian sister in law's mother the lovely Shirley.

Shirley was 84 and still enjoying life in the USA.

She sadly passed away a few months ago but we have a great supply of jokes to remember her by.

 

I had to delete some of them - some were too rude!!!!

 

Aine

Member

Re: September 2016 starters

LADIES   ........DO YOU ALL WANT TO HAVE A LAUGH????? HERE ARE SOME JOKES FROM MEDICAL STAFF....ENJOY!
 
I was performing rounds at the hospital one morning and while checking up on a man I asked .  .  ' So how's your breakfast this morning?  ' 
'It's very good except for the Kentucky Jelly.  I can't seem to get   used to the taste.' Bob replied.

I then asked to see the jelly and Bob produced a foil packet labeled 'KY Jelly.' 
Submitted by Dr. Leonard Kransdorf, Detroit , 
 
A nurse was on duty in the Emergency Room when a young woman with purple hair styled into a punk rocker Mohawk, sporting a variety of tattoos, and wearing strange clothing, entered .  .  . 
 
It was quickly determined that the patient had acute appendicitis, so she was scheduled for immediate surgery. . .  When she was completely disrobed on the operating table, the staff noticed that her pubic hair had been dyed green and above it there was a tattoo that read. . . .  'Keep off the grass.'

Once the surgery was completed, the surgeon wrote a short note on the patient's dressing, which said, Sorry. .  .  had to mow the lawn.' 
Submitted by RN no name, 
 
 

1 MORE....... 
Baby's First Doctor Visit. This made me laugh out loud.  I hope it will give you a smile!

A woman and a baby were in the doctor's examining room, waiting for the doctor to come in for the baby's first exam.  The doctor arrived, and examined the baby, checked his weight, and being a little concerned, asked if the baby was breast-fed or bottle-fed.  
'Breast-fed,' she replied. . . 'Well, strip down to your waist,' the doctor ordered.

She did.  He pinched her nipples, pressed, kneaded, and rubbed both breasts for a while in a very professional and detailed examination.  Motioning to her to get dressed, the doctor said, ' No wonder this baby is underweight.  You don't have any milk.'

'I know,' she said, 'I'm his Grandma', But I'm glad I came.
Member

Re: September 2016 starters

Hi everyone!

I am on 3rd cycle of FEC day12 and am just coming back to the land of the living.  

That was really really tough - nausea and extreme fatigue and battling to keep the sickness at bay.  I had to eat every 1 1/2 hours to keep it down but that didn't really work.  Bad constipation, bloating, etc.

Still swear by the Heinz WW tomato soup.  Also lettuce with vinaigrette dressing.  And ice-cream.

 

Also I forgot to put the seabands back on one day after a shower and I do think that made me much worse for the rest of the day.

 

I also have sinus issues - not too bad but always aware of them - not too comfortable when you have to wear glasses though.

Rough gums appear around day 7 and disappear after a week.

 

I haven't had ulcers - I always use kitchen roll to dry my hands in the bathroom and kitchen, never share a towel - may be a help?

 

Start docetaxyl on 21st.

I am reading your posts with great interest.

I have to take Dexamethasone for 24 hours prior to this.. has anyone else done that?

 

I haven't had any nail problems but I am having a strange sensation now in them as if I am aware of them all the time.  Anyone else?

.

I could stand any pain if I am not having nausea problems ....at least thats what I think now!

 

At least I'm a Celebrity starts on Sunday - that always entertains me so put your tootsies up ladies and have a laugh for the next few weeks!!

 

This is so tough isn't it?  I can't look at myself in the mirror without a hat on...I dont look like a human being let alone a woman.  I didn't realise how much our hair flatters us and how important is was to how I feel about my looks.   Thank god I can wear a hat and not look odd in public.  I feel for the ladies who had to endure this torture in warm weather.

I went to Tesco yesterday and was so dizzy I had to do half the shopping and go and sit in the car for a half hour and go back in again.  I sat and stuffed myself with Ritz crackers and pate in the car and just tried to chill out!!

 

Usually I am a very sociable person but at the moment I dont want to talk to anyone - am happy to be on my own dozing on the sofa and generally not thinking.  I can just about stick hubby!  But not the rest of the family circle!   And dont want to hear anyones problems!  Anyone else?

 

X

 

 

Member

Re: September 2016 starters

Hi Cathy

That's good news. Hopefully you will feel much better for the rest of your treatment.
Last chemo for me today. Yay! Not looking forward to feeling rubbish for the next 8-10 days but I can see the light at the end of the tunnel now!
Sarah x
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Re: September 2016 starters

Saw the oncologist today and following my admission to hospital with an infection last week and generally dreadful side effects, I've been changed from Taxotere to Taxol which is administered weekly and is said to be much better tolerated as it's given more frequently and in lower doses. The fact sheet I was given says it can make you feel tipsy as it has as much alcohol as a pint of beer in it!!  It also means I don't need the Ondanstron (yippeee) as the constipation it caused along with my Crohns was causing havoc with my digestive system. My last dose will be 21st December if all goes to plan and then radiotherapy in January. Feeling much more positive now that my SE are likely to be more manageable and looking forward to a weekend of near normality (hope that's not tempting fate).

 

Hope others are getting good help with managing this awful period of the treatment.

 

Cathy

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Re: September 2016 starters

I really hope so, Dawn. I try not to moan but I really am getting fed up with having such a picky appetite, and one that changes from day to day!
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Re: September 2016 starters

Thanks for offer re: colonoscopy See See - though if as I hope it is a non urgent referral it will be some way off and probably post chemo. Something to look forward to in the New Year (not), but hopefully, I will be better able to cope with it by then. Unfortunately, ginger and pineapple, the two things that seem to be most recommended for chemo patients struggling with appetite, are amongst the few things I went off early on in the process, during my first FEC cycle. I have had a bottle of ginger ale in the fridge from before my treatment started, and decided to give it a go on Saturday but could only manage a couple of mouthfuls! Nurse also suggested flat Coke, but as I have gone off most sweet things and never liked Coke to start off with, I'll give that a miss too. I told you I was awkward! 😉 Sorry to hear Auntinanna is having the same problem with drinks as me. It does seem that your taste can change over the treatment cycle, and others have reported that it has got better over time, so let's hope the same happens to us and our appetites will improve.
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Re: September 2016 starters

Hi Old Dawn,

 

My digestive system is not coping well either. In terms of drinks ginger beer is good for me though I sometimes let it go flat if I'm troubled with bloating. Also I find fennel and detox tea are good for the digestion and taste acceptable.  

 

I usually take immodium (at least three a day) because of my Crohns but stopped for the first 12 days of the T cycle because the effects of chemo and antibiotics were too much to bear. This strategy has resulted in a sore bum but that's less of a problem than constipation.

 

I have the same drug as you for persistent thrush.

 

I've had LOADS of colonoscopies in my time so if you need any advice, I'm happy to assist. 

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Re: September 2016 starters

I'm the same Dawn, with drinks. I am finding it very difficult to find palatable drinks. I think the slimy sensation I have doesn't help as a lot of drinks make it worse which then sets off nausea. Weak squash and occasionally coffee are about all I can manage.
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Re: September 2016 starters

Been to doctor's and was reassured that there's no need to panic about bleeding when going to the loo (on closer inspection it appears that the blood is not actually in the poo) unless it persists for a fortnight or more (pity the doctor in the hospital wasn't clearer about what she meant by persist!). She agreed with hospital that it is probably due to irritation of bowel by all the medication I have been on The main suspect is the antibiotics, because it is listed as a side effect in the leaflet with them. Although I have had them before without it causing this problem, the doctor pointed out that I am now on a different combination of chemo drugs, and it may be that my body is less well able to tolerate the antibiotics with the T and Herceptin. Anyway, she has said to stop taking the antibiotics and all other medication apart from the Fluconazole (to prevent oral thrush) to allow things to settle down, but to go back if the problem is still there in a fortnight. She is also referring me for a colonoscopy to set my mind at rest. It is a non-urgent referral at the moment, but she will escalate it to urgent if I have to go back again in a fortnight. Have briefed oncology nurse, as if we still have a problem in a fortnight, the next chemo cycle will have to be postponed. We will have to wait and see what happens. I am unfortunately still having to dash to the loo about 10 minutes after eating something, so I hope it does settle down soon! Have been advised not to reach for lmmodium for the time being, as the fewer drugs my gut has to deal with the more chance it has to recover on its own. Let's hope so. Have also got the Difflam, and my mouth is a bit better today. I have also managed to keep eating today - advice about eating small amounts when you feel like it is sound if you can eat what you want when you want, and now I'm off the antibiotics I can. Chicken and sweetcorn soup I had for lunch was the first thing I can say I actually enjoyed eating since Saturday morning. The main problem is drinking, as there is very little I actually want to drink. At the moment I only seem able to tolerate water and black tea with milk. Does anyone else have this problem?

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Re: September 2016 starters

Auntinanna - you might as well give in to the random cravings for treats, there's precious little other comfort to be had while you're in the middle of this! One chocolate chip cookie once in a while won't hurt you. 🍪 Regarding sore mouth, the chemotherapy unit does normally send me away with the meds I need (unless I can get them over the counter myself), but as I have not had any mouth problems previously with the FEC cycles, they probably didn't see any reason to give me anything for this following my last treatment. But you're right, they should probably have anticipated such problems with the T as sore mouth is a common SE. So it's back to the doctor's for the Difflam in the morning. I've got to go back there anyway for another reason. They sent me home from A&E this afternoon after obs, blood tests all came back normal (surprisingly after 3 cycles of FEC nurses and phlebotomists can still find plenty of veins in my arms to go at; I have no PICC line but feel like a human pincushion at times) and a superficial examination found no evidence of piles or other obvious causes. Hospital doctor said bleeding unlikely to be caused by Paracetamol or Ibuprofen because blood would have been darker if that was the case. Conclusion and advice: bleeding likely to be result of irritation of gut caused by 'Tax Trots' but if it persists, I should go to GP and ask for further investigation to be done. We were surprised/ disappointed they didn't keep me in under the circumstances, but they were incredibly busy, so I suppose they have to send you home if all the tests they have done are negative and you are walking wounded. Unfortunately, the problem is persisting - tonight I had another episode the same, despite eating very little today, so we are back to square one and will have to see GP in the morning and ask to be referred somewhere urgently for further investigations. I am becoming a regular visitor at the surgery, they must be fed up of me turning up with one problem or another (mostly not directly related to the chemo). We'll have to see how things go from there. Supposed to be seeing breast surgeon on Friday about operation, so hope this is not overtaken by events.
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Re: September 2016 starters

Oh Dawn you are being put through the mill. I hope it isn't all too serious and it is sorted soon. Can your oncology team not give you Difflam? I have received it from the outset as part of my post chemo prescription, even before anybody knew if I'd suffer from sore mouth.

I've largely gone off sweet things too, though I didn't have much of a sweet tooth to begin with. I've also gone off milky drinks e.g. lattes. Having said that my appetite is like a spoiled child. Today it demanded a giant chocolate chip cookie! As my diet is generally healthy I don't feel too bad at giving in to random cravings too often.
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Re: September 2016 starters

Thanks for good wishes Auntinanna. Just like Lisad I have also largely gone off sweet things and have a stock of uneaten chocolate. Went to doctor this morning to get throat and urine checked. I don't have a throat infection, and intermittent soreness is probably due to acid build up/ reflux, which could be antibiotics and could have been made worse if a tablet went down the wrong way. Have been recommended to take Omeprazole for this, and have been given a repeat prescription. She doesn't think I have UTI on this occasion, but has sent off a sample to make sure. Nurse confirmed that mild nausea/ loss of appetite is a SE of the chemo and that it 'comes and goes,' but didn't suggest any practical solution other than eating whenever I feel like it (not much use if I can't because of the antibiotics). Doctor said I should get advice from nurse on remedies for sore mouth, nurse suggested Difflam (only available on prescription from doctor! 😵). Can't go back for this at the moment - I am currently in A&E again to get latest scare (blood in poo) checked out. Had another attack of the 'Tax Trots' not long after I got home from doctor's, and as you can imagine I freaked out when I saw this 😲. After discussing with nurse on phone, she confirmed this is not a known SE of the chemo drugs, but could be either piles or could have been caused by Ibuprofen or Paracetamol which I was taking for bone pain. She said to stop taking them now if pain appears to have gone, and to go to A&E to get it checked out, so here I am again 🏥. They have taken obs and blood samples, but it's extremely busy, so could be in for a long wait. All this is getting me and my husband down, it seems to be one thing after another. I hope it doesn't turn out to be anything serious.
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Re: September 2016 starters

I feel such a fraud complaining about my SEs which are so minor compared to what you are all going through. Fatigue has hit me like a ton of bricks this cycle, which has slightly offset the joy of reduced nausea, but I'm trying to look on the bright side.

Has anybody else has issues with excess mucus? I seem to have a permanently slimy mouth for about 7 days or so each cycle. Most unpleasant!

I hope you all continue to improve and get through this tough time.
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Re: September 2016 starters

Hi Lisad and Old Dawn

 

Its sadly reassuring that you both seem to be feeling like me. However on day 9 it seemed to improve. My appetite came back and I managed a short walk. There is hope 😏

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Re: September 2016 starters

Hi Dawn

 

Like you I have also lost my appetite. Gone off sweet food and mainly try and eat little and often.

I still have two boxes of Thornton’s chocolates given to me last month for my birthday unopened- saves me putting on weight!Woman Very Happy 

 

 

I seem to have developed hot sweats today - have not experienced these since when I was going through the menopause.

 

Very tearful and moody - I'm hating what this treatment is doing to me, It is like I am grieving for someone. Was never like this beforeWoman Sad

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Re: September 2016 starters

Thanks for advice Sweetbriar1 - I use Corsodyl as well, and my dentist warned me it can stain your teeth, though that is the least of my worries at the moment! From tomorrow I will take your advice and won't rinse with it immediately after brushing. At the moment I have the opposite problem to you with eating. Since last night I have gone right off food and drink, which is unlike me. 😛 I had no such problems with the FEC cycles once the initial nausea wore off, which was within 3-4 days, so this has come as a very unpleasant surprise. This time I was given Emend on day of treatment and for 2 days after, which may explain why I have only recently started feeling like this, if the effects have now worn off. I can't say I am feeling nauseous all of the time, but even when I am not, I just don't feel like eating anything - there is nothing I particularly want to eat or drink 😩 and tea with milk (not too strong) is just about the only hot drink I can tolerate. I really struggled to eat anything today, but just about managed some porridge for breakfast and some beef and vegetable casserole for lunch. What makes it even worse is that a lot of the time it feels as though there is something stuck in my throat, so it is difficult to swallow food and drink, and even to take tablets. Added to which, I am having to take antibiotics for an infection - a recurrent armpit infection came back on Thursday for the fifth time 😭 although this time I managed to get antibiotics before it had chance to really get going - which have to be taken on an empty stomach, so I can't just eat when I feel like it. I am definitely going to the doctor again in the morning to get my throat checked, as well as to check whether I have a UTI. If the nausea and lack of appetite persist I will also have to contact oncology nurse for advice/ more anti-sickness meds, because I cannot go on like this. 😱 I may have ended up in hospital twice with FEC but I am beginning to think that otherwise I got off relatively lightly. Still it is encouraging to hear that you haven't lost your appetite, and hope your ulcers will go away soon so you will feel more comfortable eating. Have they given you anything for them? I believe there is some special gel you can get to clear up mouth ulcers, so I'd enquire about this tomorrow if I were you, if you haven't already. Good luck and hugs all round to everyone else suffering similar SEs. XX
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Re: September 2016 starters

Hello ladies, I'm on #3 of 4 TC & so far I'd say the worst thing I've experienced is the fatigue & achey niggles in joints. Also mega burnt mouth sensation & crave sour/tarty tasting things. Pineapple is great! No sickness so far but they do give me lots of meds to prevent this. I have lost my hair & my nails are starting to get crumbly now but I keep them painted dark. I have gastro-intestinal issues...Nothing major, just bloating & wind & constipation sometimes which doesn't last too long. Some indigestion in early part of cycle. I try to take paracetamol at night if I remember and usually take a Nytol as sleep is elusive! I tend to feel humanish around day 10. This is when my g-csf injections have finished.
If after surgery they still find cancer cells, I will be moving on to 4 cycles of FEC (as part of the Rosco trial) so I may be coming back to you for advice! All in all, I'd say TC could be worse!
Hope this helps xx
Ru
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Re: September 2016 starters

Thank you Sweetbriar1 that is helpful. We can all get through this.
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Re: September 2016 starters

Hi OldDawn63 - I've had aching gums and sensitive sinuses too. The sinus issue actually started whilst I was on FEC but it hasn't been too bad. My dentist told me not to use a mouth wash (I use Corsodyl) after brushing my teeth as they counteract each other. I tend to therefore use the mouthwash midday or during the night during one of my many jaunts to the bathroom! I also floss twice a day. I love my food so the thought of not being able to eat properly because of ulcers etc fills me with dread. My taste buds have definitely changed though. I'm always really hungry. I'm trying to watch my weight but it's difficult when you can't exercise as much. I haven't stood on the scales but I'm guessing I've put on about a stone since diagnoses in June. Thank god for elasticated waste bands! 😉X
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Re: September 2016 starters

Thanks for your positive post Sweetbriar1 - and while you're right about the nausea not being anything like as bad, this morning I have felt sick a couple of times (but hasn't lasted long). It could be the T but I suppose I can't rule out the possibility it and the trots are due to some virus. Nausea is listed as a possible side effect of Taxotere though not a common one, unlike with FEC. Sorry to hear you have a sore mouth as well as me, this is listed as a common side effect of T. Although I haven't got any ulcers at the moment, the sore mouth and throat and (possibly related) heartburn is starting to get me down a bit, and is making it difficult to eat and drink sometimes. I'm also getting pain in my gums and sinuses at times, which I didn't have at all with the FEC. Has anyone else had this? Strange as it sounds, I am wondering whether these pains are being caused by a urinary infection rather than the chemo, because the last time I had gum and sinus pain like this a UTI appears to have been the cause (it's surprising how these kinds of infections can affect you). On that occasion the dentist confirmed I didn't have any gum disease, and couldn't account for the symptoms. However, I was generally unwell and had other strange symptoms, so the doctor suspected a urine infection and taken a urine sample. She phoned me not long after I got back from the dentist to confirm I did have a urine infection. The gum pain stopped once I had completed the course of antibiotics I was prescribed for this, so although it sounds weird, it must have been the cause. The bladder control issue and other symptoms also point in the direction of a possible UTI. It's Day 7 tomorrow, so I think I had better go to the doctor to get it checked, if only to rule it out.
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Re: September 2016 starters

Ladies - the main thing I have found about toilet visits is to be prepared for every eventuality! For instance, the FEC gave quite a few of us constipation, and for some of us it took a while to resolve, but each of us found something that worked for us in the end. But from reading the posts of ladies further forward with their T cycles, it seems that Taxotere can cause the opposite, as well as making us wee a lot. I have noticed a number of posts about the 'Tax Trots' and I've actually experienced a bit of this myself today, though only a couple of times. Being on a combination of drugs it is a bit unpredictable as to which way things will go for me, and I wouldn't be surprised if it changes across the cycle. So it's probably a good idea to have in stock some laxatives and Immodium as well as the Tena Lady pads just incase!

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Re: September 2016 starters

Dear Ru, there are some plus sides to the T, you don't feel nauseous, or at least I didn't (my oncologist had told me that most people don't feel sick whilst on T). Also, my veins aren't so sore. Again, I had been pre warned that T wasn't as harsh as the FEC. I personally find managing the bone pain easier than feeling sick all the time. One other s/e I forgot to mention was the sore mouth. I've got one or two ulcers but nothing too bad. The best thing is it's over half way through now. Keep positive and you/we will soon be at the end. X
Ru
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Re: September 2016 starters

Thank you Sweetbriar1 I am dreading the toilet visits cause they have not been easy with the Fec either.
Ru
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Re: September 2016 starters

Thank you OldDawn63
Ru
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Re: September 2016 starters

Thank you See See
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Re: September 2016 starters

Ru - I also had my first T cycle on Tuesday and was dreading it. I'm afraid it's way too early to tell how it is going to affect me, and because these drugs affect everybody differently, there really is no way of knowing exactly how the T will affect you, although being aware of the most common SEs through this forum, and the advice your oncology team should be able to give you, will help you prepare for the worst. However, if you are having the T in combination with Herceptin (like me), it may not be easy to establish which of them has caused some of the SEs as both can cause similar effects (hot flushes for example). The bone marrow injections can also cause bone pain, although I did not experience any significant pain from these during my FEC cycles. It's now Day 5 of my first cycle of Taxotere, Herceptin and Pertumazab, and the main SEs I have had so far are: hot flushes (occasional), red puffy face (not all the time, comes and goes), slight swelling of lower legs, some bladder control issues (but not severe), some aches and pains in my knees, hips and lower back (currently controlled by painkillers), heartburn/ indigestion (trying to control with Rennies), slightly sore mouth (trying to control through regular rinsing with Corsodyl and salt solution and Bonjela), and fatigue/ 'chemo brain' (probably the worst things). I was warned about the bone pain and was given Paracetamol on the day of the treatment, just before I was given the Taxotere, and was advised to take a couple of them four times a day rather than waiting for the pain to appear, as it is more effective at controlling the pain if you take them in advance. I was also advised that I could take Ibuprofen instead, but to be careful, as you can't take as many of these in a day as you can Paracetamol. It is early days but so far the Paracetamol has been sufficient for me. If the pain gets worse I will ask for something stronger and if more severe SEs appear I will seek further help. I don't know whether this helps you but let's hope your SEs are not too bad and you can control them using simple remedies like I am managing to do at the moment. If not, the best advice I can offer is not to suffer in silence. If nothing you have to hand works, contact your oncology nurse for further assistance, or if you are feeling very unwell and you are worried (particularly if you feel shaky, feverish or confused), get yourself straight to A&E.

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Re: September 2016 starters

Hi Sweetbriar and Ru,

 

Sweetbriar your experience of T seems rather like mine except that the hospital also diagnosed me with a chest infection (inpatient for 24 hours) so I wasn't able to get out and about.  I didn't get out of the house till day 9 and I seem to have done too much walking (to the pharmacy for meds including something for thrush brought on by the antibiotics) and didn't surface till 11.30 today. I did a shorter walk this afternoon! 

 

Ru, I'm afraid I don't have any tips other than what's already on this thread and to be sure you keep your team informed of any side effects that concern you. My blood pressure has been pretty low on T which has made me feel dizzy (but this may have related to the alleged chest infection I had)

 

Good luck all xx

 

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Re: September 2016 starters

No, it's definitely not just you. I got up a few times again last night so there's obviously still a bladder control issue going on. 😛 Was using up some old STs l had left over from my pre-menopausal days, but have now bought some Tena Lady, just incase! 

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Re: September 2016 starters

Hi Ru
I started the T bit 10 days ago. Was nervous about starting because of what i had read from other ladies. I was fine on the day of my chemo and the day after. The bone pain and tiredness then kicked in. I managed it with paracetamol and ibuprofen every 2 hours or so (alternated) plus 1 Claritin in the morning. That managed the pain although if I lapsed with the pain killers I paid for it. For the first few days I also had night sweats and about 5 visits to the toilet per night which obviously resulted in lack of sleep for me and my increasingly not so sympathetic husband! Ended up putting a towel on my pillow which helped with the sweats ( hadn't suffered with this s/e quite so bad whilst on the FEC part). After day 7 the pains subsided so I stopped with the painkillers. The night sweats have eased off too. I occasionally get the bone pain in my back and ankles but it soon goes. I get out and about every day which I think helps. Hopefully that's it now until next time. Good luck with yours it might not be as bad as you think x
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Re: September 2016 starters

So what's the deal with this dizziness? 

Had cycle 3  TC on Tuesday, started g-csf injections again last night (😣) and today I feel utterly useless! I'm usually fairly game by now. I know recovery gets longer the further in you get but...!!!

Very frustrating. Has anybody had anaemia? I dont know when I'm supposed to know if I've got it! Temp is normal. Not breathless, just imitating a wet rag today. 

Ugh...and I wanted to bake today!

Rant over.

 Jo xx

Ru
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Re: September 2016 starters

Hie I started Fec-T in September, and had all sorts of issues especially with cycles 2, from painful veins, flu and increased urination. I have read most of the posts here and have been helped. I used the cold cap twice and on Cycle 3 could not tolerate it. Hair intact but very thin. I am starting the T part of the chemotherapy any advice.
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Re: September 2016 starters

Reassuring ladies that it's not just me who is expericing bladder control problems - hate that fact that I have to wear something at night for emergency dash - Not nice Woman Mad 

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Re: September 2016 starters

I'm on EC not FEC but if I'm going to be sick I have to try and empty my bladder first because even the tiniest bit of liquid in there shoots out with the force of stomach spasms. Luckily I am wearing my pyjamas at the time!
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Re: September 2016 starters

Yippee. I managed a shower and a passing thought for how I might look today 😜 BP is back up and temp seems fairly stable. Just the normal SE to cope with. Hope you all have a manageable weekend xxx

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Re: September 2016 starters- Worst cold ever and bladder control

Hi

I had the bladder control issue on FEC-T round one - good job I was wearing pyjamas!! Prepared for it this time with Tena Lady - but no issues so far - but have been made familiar with the necessary dash - oh the joys!!

 

swampy

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Re: September 2016 starters- Worst cold ever and bladder control

Hi Lisa - I've also had a few issues with bladder control at night while on FEC, although I put it down to the extra fluids. I never had any 'accidents' at home, but I did once or twice while in hospital, probably because it was further to go to get to the loo. Since the sodium deficiency episodes I haven't been drinking quite so much, and I have also moved on to T now, and it doesn't seem as bad at the moment. But it's probably too soon to tell.

 

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Re: September 2016 starters

Hi Lisad 

yes I had that problem on FEC. At present I'm sleeping so much that drinking a lot isn't a problem!

good luck xx

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Re: September 2016 starters- Worst cold ever and bladder control

Hi Ladies

 

Anyone else sufferting from a bad cold?? I don't usually suffer but I have had my worst cold ever, four days on it seems to be getting better, but not nice, my nose was a running tapWoman LOL

 

Does anyone else suffer from bladder control at night?  I seem to go through a period between sessions where I appear to have no bladder control at night and only just make it to the bathroom?  Yesterday evening I really did not have much fluid and yet I was up 3 times on a emgerency dashWoman Frustrated  

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Re: September 2016 starters

I'm not looking forward to hormonal therapy after 'active' treatment either. My cancer is ER+ as well as HER2+ so I will be expected to endure 5-10 years of this as well as 12 months of Herceptin injections. I'm post-menopausal so will be on some form of AI rather than tamoxifen. I am aware that some ladies are quite badly affected by SEs from these drugs (and not just hot flushes). I know it's some way off, but I can't help feeling apprehensive about the future, when it's as though the treatment and the anxiety will never end. This sort of thing may account in part for Madmac22's feeling of anti-climax, that and the fact that she is now shifting to a new phase. If you can, it's best to try and focus on each stage of the treatment at a time rather than looking too far ahead. Regarding hot flushes, I have never been on HRT and wasn't affected unduly by hot flushes while going through it, so I am hoping that things won't be too bad. From what the nurse said the other day it is a job to tell whether my hot flushes are due to the Herceptin or the Taxotere.

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Re: September 2016 starters

Had a few hot flushes so far but mostly during the day. It was that cold last night would not have minded one! Should be careful what I wish for, but I can't seem to find any warm sleeping caps to wear in bed, hence am wearing several layers of them. I was also surprised how cold my head was outside today, even wearing a fleece hat over my wig. ❄ A synthetic wig has nowhere near the same insulation quality as your own hair, even with two wig liners underneath. I must take back silly criticism of husband last night. No, sometimes he doesn't understand the need to communicate with others going through the same thing now and again, but mostly he has been brilliant, and has had a lot to put up with, including quite a lot of grumpiness from me (nobody's perfect! 😳) as well as the worries about my illness and treatment, particularly the times I was in hospital. He has also driven me round anywhere I have needed to go, mostly without complaining! Reading posts from other ladies on other threads, whose partners have chosen such a time to walk out on them or are expecting them to resume domestic duties after treatment when they have not fully recovered, makes me realise how lucky I am to have such a supportive husband. 💑 So will try and remember that in future before posting any silly, trivial gripes - and also to avoid posting so late at night. I don't take back criticism of posting on the forum via phone though, it's playing up again. 😬
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Re: September 2016 starters

Had a few hot flushes so far but mostly during the day. It was that cold last night would not have minded one! Should be careful what I wish for, but I can't seem to find any warm sleeping caps to wear in bed, hence am wearing several layers of them. I was also surprised how cold my head was outside today, even wearing a fleece hat over my wig. ❄ A synthetic wig has nowhere near the same insulation quality as your own hair, even with two wig liners underneath. Should also take back silly criticism of husband, no, sometimes he doesn't understand the need to communicate with others going through the same thing now and again, but mostly he has been brilliant, and has had a lot to put up with, including quite a lot of grumpiness from me (nobody's perfect! 😳) as well as the worries about my illness and treatment, particularly the times I was in hospital. He has also driven me round anywhere I have needed to go, mostly without complaining! Reading posts from other ladies on other threads, whose partners have chosen such a time to walk out on them or are expecting them to resume domestic duties after treatment when they have not fully recovered, makes me realise how lucky I am to have such a supportive husband. 💑 So will try and remember that in future before posting any silly, trivial gripes - and also to avoid posting so late at night. I don't take back criticism of posting via phone though, it's playing up again. 😬
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Re: September 2016 starters

Hey See See yes I'm also not looking forwards to the old tamoxifen. I'm also hairless & found that I'm much more comfortable in bed with a cotton cap on even though I sweat mainly on my head.
It's all a mystery & so many different affects it has on different people.
I'm certain a chest infection would definitely make you sweat more & hope you recover soon! Chicken broth is my rx 😊
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Re: September 2016 starters

Hi atomicjojo,

I also had to stop HRT. That was back in June and the day sweats seem to have calmed down. It could be because I have no hair so it doesn't affect me as much. The night sweats are either a weird change in my hormones (god help me when it gets to hormone therapy); the taxotere or a result of what the hospital say is chest infection (I'm breathless, tired and dizzy but don't have a cough / cold)

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Re: September 2016 starters

All the time but I had to stop my HRT for obvious reasons so I've got double whammy...
It's odd that some days are worse than others so still trying to find a link, maybe food related. Had my 3rd cycle TC 3 days ago & had 2 glorious nights sleep with the help of Diphenhydramine & paracetamol. Actually woke up cold!
It's so frustrating though, these sweat sessions. I'm always sniffing myself too Smiley Happy