September 2016 starters

Going through breast cancer treatment Chemotherapy monthly threads
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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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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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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

 

 

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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.

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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

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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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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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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.

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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.

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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. 

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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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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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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.

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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.

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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.

296

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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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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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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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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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! :snowflake: :snowman: 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.