Hi Egg
I had a portacath fitted mid January. Ive had 2 blood tests and FEC1 and 2 through it so far. I wasn’t keen on the idea of it at all but once inserted and settled down it has really helped me and nurses when having chemo. I would definitely recommend having one if you can. Mine is on the inner side of the upper arm 1/3 of the way up as not much spare flesh in my upper chest so I just have to watch extending that arm about my head to often so I don’t damage the tube - other than that I do forget it’s there. Hope that helps and good luck.
Hi everyone,
Thanks for all the advice about portacath. I am definitely going to ask my onc about it at next appointment. Am on day 15 of FEC2 so entering the “normal” week before it all starts again. Next one will be slightly out of sync because of low white cells in last cycle ao I’m hoping it will be ok this time and not delayed again!
Just wondered what others do about vitamin supplements particularly vitamin d and c? Also heard b6 is good to try and prevent neuropathy which might be an issue in the T part of regime. The docs seem anti everything in clinic but I thought having vitamin c surely better than catching germs and ending up in hospital especially when neutropenic!
Hope you are all having a good weekend and finding the energy to do what needs to be done. Mine is spent cleaning and unpacking after half term!
Egg x
Thanks so much everyone for all your kind words re my biopsy. I really do feel incredibly supported by this group.
Egg, I’m still taking multivitamins and a cranberry capsule. Cranberry helps protect the bladder which can be irritated by chemo. It also has vit c.
One quick question. I got prescribed difflam mouth rinse this time because I had a sore mouth on first two cycles, although I think the sore mouth might be to do with low white blood cells. Should I start the mouth wash now or wait for the sore mouth issues? I’m on day 5.
One funny thing. On Friday when I went to the funeral people kept grabbing my right hand and then thumping my right arm really hard while they told me how well I was doing. I was dying to say that’s my chemo arm and you’re really hurting it but somehow I didn’t have the heart! Happy Sunday everyone. R x
Hi Robin- im not sure the difflan stops the sores coming but more provides relief if they arrive?? Ive been lucky so far and only suffered with what i can only describe as a thick throat and a couple of tiny ulcers - i tried the difflam but found it too strong so just used bonjela on the ulcers. So far thats been enough help. I went to a demystifying chemo day right at the start at my hospital and the nurses were advocating salt mouth rinses too. You can dilute the difflam but im not sure what the best days would be to take to try and prevent any sores. Sorry not to have been much help xx hope your day been ok xx
I am prescribed chlorhexidine mouthwash to use for Tax chemo mouth problems, and I use it regularly to try to prevent it, not treat it if it occurs. Not sure if yours will be the same - might be worth checking?
I’m not sure if my youngest has scarlet fever - it’s pretty rife around here at the moment - and I’m stressing as I’m due round 3 this week. I’ve never worried about myself getting ill from the children before - it’s just part of being a mum, cleaning up sick, sleeping with them to comfort them when they’re feverish in the night, and worrying about myself when they are suffering feels really selfish and totally un-mum like!!!
Blue - when I had neutropenia I got some masks from the chemist. I felt a bit ridiculous but my older son had stinking cold at the time and I really didn’t want to end up in the hospital. So you could try that? If it’s any consolation I think scarlet fever tends to affect kids rather than adults.
Robin - I have something called Biotene mouthwash. It’s for dry mouth but I used it in the first week of second cycle and it seemed to stop the sore mouth that I had in first cycle at the same point.
Good luck to all having chemo this week!
Egg
Well just surfacing from FEC 3. Been a bit absent over the last few days. Dealing with awful heartburn acid reflux tummy pains, nausea and generally not a scrap of energy even getting up was a no no.But omeprazole sorted my stomach issues out and am beginning to get up so got to sort myself out a bit.
Envious of all you people with energy to move house and clean and generally be extremely active. Don’t know how you do it.
And sorry for all your lovely people with problems. Jackie your bob sounds dreadful! Robin chemo buddy, glad for you that you managed to get to your friends funeral and that your results are positive. To everyone else, hope all goes well this week for anyone having chemo. Am just going to get up I think and try and motivate myself.
Hugs to all
Mooneyxxx
Hello everyone. Mooney sorry to hear round three has been tough for you. Even when side effects are minimal it’s all pretty much pants, isn’t it? All we can do is sit it out and look forward to our good days. I’m finding the ‘half way through’ milestone a bit of a burden as there still seems such a long way to go. And getting nervous about the unknown that is T. Hope you all have good days today. Sending hugs to all the teddies. R x
Hi Ebim, thank you. Yes line sorted out yesterday and chemo went ahead. Felt really sick yesterday evening despite the emend and ondansetron and a mteachlopramide! But not feeling so bad this morning…
glad to be halfway through but like others having concerns about the T part which my daughter has nicknamed the Terradactal cycles as we have problems saying docetaxel! I’m booked in to a looking good session on Thursday - not a big make up wearing but hoping for some advice on eyebrows as mine are definitely starting to thin!
Hello everyone.
Been catching up on the thread and as usual it is reassuring to read the comments and feel able to relate so easily to what is being said.
Been meaning to post last week but was half term and time just flew by with the kids.
I am in my good week and am due my 3rd Fec on Saturday. Not looking forward to it as hate the way the steroids and drugs make my feel and i know what Is coming. Hate that complete lack of energy and inability to concentrate on anything and feeling of being in a bubble and not really with it. However, I too am also getting very nervous about the dreaded T drugs to follow.
I have had a picc line in from the start and I have to say I am so glad I did. I have had no problems with it and it makes administering the drugs and taking bloods so easy. I get it flushed once a week and I have to cover it in the shower but most of the time I almost forget it is there.
When I went for my second Fec I decided not to cold cap (I did the 1st time)! as my hair was starting to fall out and the nurses said the cold cap wouldn’t stop it. Three days later I got my hair cut short and felt so much better, think it was because I had control of my hair again, amazingly it is still hanging on (though a little thin in parts!) but does it fall out quickly after the 3rd Fec? I also don’t seem to have lost any eyebrow hair or eyelashes, when do they go?
Good luck to everyone, keep taking it a step at a time
xx
Hi Ebim, if it helps, my brain isn’t as it should be at the moment either! I feel detached from day to day life at the moment. My interest, energy and commitment will get me so far down a train of thought, event or activity, then just stops like it can’t be bothered any more! My vocabulary has gone too!
Hair is one of my biggest brain occupiers at the moment. I am cold capping but have lost quite a bit of hair and have bald patches, but am carrying on with it if I can as when wearing I bobble hat, I look ‘normal’ so can avoid looks and questions when out and about. Well, during winter anyway! Did you cold cap? I think a lot of members of the thread who started cold capping aren’t continuing with it for their own reasons. Is there only me still capping…?
Blue and Ebim - so glad I’m not the only one whose brain seems to have gone on holiday! Keep swooping words around - my boys think I am quite mad. I have only done 2 EC so far I dreading what I will be like by the end of 8 cycles!
Good luck to all having their cycles this week. Mine due next week fingers crossed! Trying to keep away from germs in the meantime but both boys and hubby have colds at the moment so not terribly hopeful
Hope you are all having a good week and those of you who had cycles last week are getting over side effects
Egg
Hi Egg
I have boys too, and whilst they have always looked at me like I’m quite mad, look at me in a bemused manner too now and my eldest sometimes says ‘is that even a word mum?’!!! The saddest thing to me though is that they are trying to hard to be gentle with me - I’m no longer charged at, pushed, challenged to arm wrestles, jumped on…and ridiculously, it upsets me that they are always aware, even at their age, that I’m fragile at the moment.
I too am having 8 sessions and am having my 3rd tax today - my oncologist said they recommend 8 chemo pre surgery but reassess need every 2, so I could end up with just 6 depending on the behaviour of my lump? My MRI result shows a very slight - mms- improvement in the size of my lump and lymph nodes, which my oncologist was positive about.
Sending warm wishes to all.
I’m glad it’s not just me with chemo brain. I just come to a full stop in the middle of a sentence most of the time. And Ebim I totally sympathise with you about the hair. Not brushing it is the only way to hang onto it for as long as possible but even then it does fall out eventually. I now look like a bald old man with some wispy bits. I hate it. But I can look in the mirror without crying now so I suppose one does get used to anything. Thank goodness for wigs, hats and bandanas. I think if doctors knew how brutal chemo is physically and psychologically they would be quite shocked. Good luck to anyone having treatment this week. I’m one week on and feeling sort of ok. Does the spring weather help? I think it does a bit. R x
Hi Blue great news on your lump shrinking! I was meant to have a scan after 2nd chemo but I forgot to ask onc and they seem to have forgotten too! So I guess I will ask at next appointment. Is it an MRI rather than an ultrasound that they do? And Did you do T first then? I have to have herceptin and Perjeta too with the t and conintue on with herceptin after so I think that’s why I had EC first. Not looking forward to the T bit I must say, but maybe that’s just the fear of the unknown. Amazing how quickly we get into the cycles of our chemos and make adjustments so that things seem “normal”!
Blue2,
I’m cold capping too but had FEC3 yesterday and nurses said it was very boderline and the bare patches may make it too painful and even burn the scalp! However, they did give me the choice so I persevered. At the moment I don’t feel I will necessarily continue , my next 3 are TAX which I understand is less aggressive to the hair, but also I have had more time to adjust to the hair loss idea, and the cold capping so far has allowed me to retain enough to wear hats out and about, as someone said, and not look bald.
This all seems such a long journey bur we are getting through it, step by step. Keep going everyone X
Hi Egg
I’m having T first - today is my 3rd of 4 before changing to EC for up to 4 cycles. I am feeling the same apprehension regarding changing to EC, with its impact on your veins and nausea etc and just the unknown and the loss of control that goes with that. With the T I know what to expect which I think is half of the battle! My first T was the worst, last time was much better. I’ll let you know next week how this one pans out! I’m her2- so am just having the T alone. The main thing I would advise for T is to prepare with painkillers for the joint pains, and really kick back from your usual activities for the first few days, hard when you have children, but I gained more from doing so as recovered much quicker because of it I think.
I had an MRI to monitor my lump as it doesn’t show up on mammogram or ultrasound. It’s a sly one!
Oh Ebim, I cry all the time too and I think that’s ok. This is a big deal, a lengthy process and very frightening. I even cried at my look good workshop and had to delay applying my mascara because of my wet eyes, but that was OK too. Everyone was lovely and completely understood.
X
Hi Slowski
I’m glad it’s not just me still cold capping!
I’m wearing a surgeons hat today under the cap. Can you do the same to make it more comfortable and prevent scalp freeze? I have read that the cold cap protects the follicles and hair grows back faster at the end of treatment. I’ve even heard of hair growing back on tax, so you may be on the home run now! I’m having tax first so will have to see how EC affects when I switch!
Hi Ebim, have you thought about maybe accessing some talking therapies at this time? Your breast care nurse should be able to signpost you to the appropriate agencies if you were interested. I think sometimes we are not honest and cannot truly say how we are feeling to those close to us for fear of upsetting them or sounding negative and speaking to somebody not connected can be helpful? X
Oh Jackie - I thought Bob sounded bad enough but Hib must be terrible! Hope you’re feeling better and that nothing gets delayed! My friend had her FEC reduced due to the bad nausea she felt and they didn’t think it would affect her treatment - I know we’re all different but perhaps your onc can reassure you?
I’ve been catching up on the forum after spending the past wk trying to get out and do as much as possible with friends and family before EC4 tomorrow. Apologies for not responding to everyone individually but I’m thinking of you all.
It’s my last EC tomorrow (4th round) and I can’t wait to put this milestone behind me. My husband is working in the US this wk so my dad is taking me and my mother in law is staying to help out with childcare until OH returns. A bit apprenhensive about it. Love them to bits but you know what it’s like when you’re feeling rough and just want your very closest around you. Dreading tomorrow and the nausea and tiredness as it seems to get worse with every round. Fed up with the head fog, fuzzy nose and even the mention of the word “chemo” turning my stomach.
Sending you all positive vibes. We’re getting there xxxx