Hi everyone,
Thanks for the advice. I just phoned the chemo hotline and she’s told me to go up to A &E to check it out as I shouldn’t be getting this pain by day 12. It hurts to move my arm now. Let’s hope it doesn’t mean admittance!
Philomena I hope you manage to escape today.
Judy I know where you’re coming from with the dentures. I’m supposedto wear retainers every night, but I can’t face them when my mouth is sore.
Have a lovely day everyone 
My goodness, take a weekend off from reading / posting and the damn SE’s are running riot with the AAAs - what’s going on??
I haven’t had any of the arm pain but have taken Ibuprofen a few times over the last weeks and no probs with it - hope the pains ease up ladies and you get the advice you need
Moira - many congrats on the new addition to the family, lovely news.
Philomena - sorry to hear you are ‘inside’ hope you are released on good behaviour soon 
Kate - be thinking of you and family on wednesday x
I’ve had a good weekend catching up with friends etc, have felt really good for the past week or so and expect that to continue this week - all downhill after that with Cycle 3 on Friday - can’t complain though as 2 good weeks from 3 aint bad! Going into the office tomorrow to catch up with workmates - really looking forward to that. Also, we are expecting some sunshine in Glasgow this week for a change which will be great - hope the weather forecast holds up 8)
hope today is much better for those with nasty S/Es
Pauline xx
Morning everyone,
TCH cycle 2 day 21.
I had 3 nodes removed when I had my lumpectomy in January and I totally refuse to allow anyone to use that arm for blood pressure or taking bloods etc., even though some tried when I was hospitalised. It isn’t worth the risk. Even though I had a cannula in my good hand they still used my good arm for everything when I refused to let them near the other one. I wear a medical alert wrist band that says “no blood pressure or needles in this arm”. Although the fewer nodes removed the less the risk of lymphodema, I am not taking that risk. Lymphodema is not nice.
I am so glad I have a portacath inserted. (automatic at my hospital for anyone on Herceptin). No vein pain at all. It really is worth the unpleasant 20 minutes having one inserted. It may be worth asking.
My chemo notes say avoid Ibuprofen at the same time as Dexamethosone steroids, but otherwise OK and avoid paracetamol if you are taking Metoclopromide anti-sickness meds. Otherwise OK but take temp before you take them as they mask a high temp.
I’ve been using Corsodyl Daily twice or 3 times a day and have some Corsodyl Treatment ready should I need it, but so far so good. I’ve had a mouthful of ulcers but they haven’t turned painful thankfully.
Just had my bloods taken by District Nurse ready for cycle 3 tomorrow.
I am thinking of you all, and hope all your side effects are minimal, and anyone incarcerated I hope you are released very soon.
Hugs, Linda xxx
Hi all x with regards to vein pain I got it really bad & found a heat pad or hot water bottle the best relief & pain killers helped , I’ve always took paracetamol with ibroprofen , I know a few recommended voltarol but I never used it & would check with onc. It is caused mainly from the wonderful " Red" chemo & I still have lumpy veins from it. Tax is easier on the veins but leave a " burn like" mark on your hands or arm . I also asked the chemo nurse to flush my veins with saline after chemo which helped .
ive had a full ANC & was told never to give a blood pressure reading or bloods from that arm but also told & just as important is not every nurse will be aware of this & the implications , not sure if its the same for 1-2 nodes etc .
hope ur all ok x
Fec cycle 2 day 13
Hi all,
Ive not been on for a couple of days because ive been asleep more than ive been awake and i cant really be bothered with anything. i got up this morning feeling a bit better, but i do think its more of a mental thing than physical s/e’s. im just so angry at everything and everyone. maybe its the tiredness getting to me, is anyone else like this?
Moira - congratulations, hope all are doing well. My daughter had a c section last year and they kept her a little longer just to make sure that she was rested, so exciting isnt it, you’ll have plenty to keep you busy now!
Philomena - well done to your girls. sorry to hear youre in hospital, get well soon 
Kim - i have a liquid ulcer medicine called anbersol, i dont think i would have survived without it, its instant releif, from chemists. I stopped using corsydyl and got oraldene mouthwash, its very mild but still does the job.
kipper - it took me 4 wigs to find one that i can cope with, from the hospital, very short and thin webbing, raquel welch one, good luck.
maisiecake - i have a picc line and the other arm is op side so i had my blood pressure done manually with the old kind, it was fine, not as harsh as the auto one. i have found that i’m still getting a wee bit of fluid build up that feels odd around the bra line, it seems to come and go so i’m going with the flow, but i would check that its nothing like swelling from an infection. My op arm gets weird sensations and feeling comes and goes, its strange but it doesnt seem to last. maybe this is it, the way things are going to be after the surgery?
Pauline - i’m with you on the eating thing, like pac man, try anything to find some kind of taste, had to buy new work trousers !! Piggy!!
Judy - i got those bras too, i read a post by poemsgalore, she had sewn a piece of fabric into the bra to hold the softie, what a good idea, proper mastectomy bras are so expensive and not quite as flattering as these sprorty stretch ones, it works, theyre very good and cheap too.
Kate - hope you’re feeling fit for the week ahead, thinking of you and your husband. Kindest wishes.
So, back in the land of the living today, just in time to go back to work tommorow .
Keep well girls,
angie xx
One good thing about having my ipad is being able to keep in touch with everyone and everything whilst in hospital.
Good news I have been released for good behaviour, and hoping not to return. I had the GCFS injection yesterday and the neutrofils have behaved, but it really gave me back pain, but coped easily once I had paracetamol. I will now have this automatically. Thank you all for your good luck wishes, and making me laugh with with the Les Mis, I could have done with painkillers I laughed so much. Good luck ladies with the following week xx
Afternoon everyone
We seem to have been hit with the SE’s this cycle. Philomena glad that you have been released and don’t forget to take it easy.
Angie - thanks for the tip on mouth ulcer medicine, I’ll get some in for the next cycle as luckily mine have now subsided thanks to diffkamlam and igloo, and are manageable. I managed a hot cup of tea this morning with no pain I think there will be times for us all when we feel angry with the world, we have to have some sort of release otherwise we would go mad, as whatever we are doing BC is there lurking at the back of our minds.
Mel - Re blood tests etc, the chemo nurse told me that I shouldn’t have my blood pressure or blood tests taken from my op side for at least 3 months, luckily I’ve not had any vein or arm pain, but that could be because I take NSAID’s and high stength co-codemol everyday for my arthritis, so I have to take my temperature before I take my medication in the morning and last thing at night so that I get a true reading.
I baked the oat and prune muffins which were yummy and seem to have helped with the constipation problems they were really easy and I’ll post the recipe if anyone wants it.
Kate - I will be thinking of you and your OH on Wednesday
Kipper - have a word with your Bc or chemo nurse who will give you details of the local recommended wig stockists. Take someone who’s opinion you trust with you when you go to try them on. I find that I only wear my wig when I’m going shopping or going to the pub or other event. I just wear scarves the rest of the time.
I’m calling into work tomorrow to catch up with colleagues and I’m really looking forward to seeing everyone.
Pauline I’m using the talika everyday and I still have my eyelashes and eyebrows not sure if it is because if the talika or just that they don’t fall out until later cycles.
Have a nice day everyone and I hope the SE’s subsides
Kim x
Glad you’ve been freed Philomena!
I went up to A & E this morning and the doctor their things it is a problem with my tendon rather than my vein. I haven’t got a clue how that’s happened! Anyway I’ve been told ibuprofen is the way forward. It’s interesting though, how I automatically assumed it was another SE. Maybe I’m focussing a bit too much on the treatment and its effects.
With regard to the arm which is op side, I only had 2 nodes removed and was told by my bc nurse that I can never have injections or blood pressure taken from that arm again. I also have to use a lady shave, not a wet shave razor to avoid nicks. It’s very unfortunate that my ‘good’ arm is playing at being bad at the moment.
Hello! I haven’t been on here for a couple of weeks and its taken me an age to catch up on all the posts!
Ihad really bad nausea after chemo 2. I had it Monday before last, left the hospital at 12.00 and by 3 ended up in bed. Apart from loo visits I stayed there until the Wednesday. I got a burst of energy Wed morning so stripped the bed as I had been festering in there. Unfortunately I only managed ti get the clean bedding on before collapsing back into it until Friday night.
On the positive side i managed some retail therapy thst weekend and have felt lovely and normal this last week. i’ll be making the most of this week before chemo 3.
i was wondering if my anti-nausea tablets were the oroblem, or if i was just going to be worse anyway this time. For chemo 1 I had alizapride prescribed by my Belgian Onc, how for the chemo 2 my UK GP gave me Domperidone as the Alizapride isnt available on NHS. Howewever he has now prescribed me something else, but he has said if it doesnt work then i can go back to my Belgium prescription.
Sandy - like you I am having chemo before op - i have triple neg and the wanted to see chemo was working. When i saw the Onc last week he said the lump has gone soft, so i am taking that as a good sign. However i still have to have an MRI after chemo 3 to see exactly whar has changed. if it is working I will have 3 mire chemo then op. If it isnt working they willstop chemo and just give me op.
aargh! why can i never write a proper post on this Kindle!
Anyhooo just before it rudely cut me off, I wanted to send my hugs to everyone on here x
Also, apologies for the really bad typos, this Kindle msybe flying through the window soon …
Fec 3 Today. 
Prayers to all affected in Oklahoma.
Well off I go again today. I have found out that I have an appointment with the oncologist before every cylcle now which is reasuring.
Judy & Mel A - Am going to ask her about the lower arm pain.
Philomena - Lovely picture in pink. Pleased your out and about again.
Kim - No pain. Long may it continue.
Moira- Congratulations on the birth of your Grandson. Huge box ticked. Best wishes to you and your family.
Kipper - What a lovely supportive stepson. Give him a hug from me.
Mel - Really feel for you. Havn’t had my op yet so not much help. I remember it was you who had the horrid nurse. Call the chemo suite or BC Unit or GP. Don’t worry on your own sweetie.
Kate - Thinking of you and your family. Take it easy on Wednsday.
Linda - Cycle 3 for me today too. Hope all goes well.
Spudgirl - Thank you for posting. It’s good to hear from someone who is having the same clinical trial as me and having the chemo first. The tumor going soft is certainly a good sign. Mine did this before starting to disapear. For anti-sickness I have Amend and Ondansetron. One Amend I take an hour before each cycle. Hardly any nausea at all if that helps. We may be on different drugs though within chemo as I am triple positive. I too will go onto a different drug if the drugs i’m on stop working and I change to Tax after cycle 4 anyway because of the PR+ and ER+. I now know I am being carefully monitoured but you are going one further and having MRI which is even better. Would love to hear how you get on.
Pauline and any of our angles getting ready for the next cycle, best wishes. Sandy. xxx
Good luck today Primrose and Linda xx
Linda and Sandy -good luck with cycle 3 today - halfway there now
Spudgirl - lovely to hear from you, sorry you are having problems with the anti- sickness meds hope they sort it out for you soon.
Kim x
Today I had the last of the red nasty stuff the first part of ECMF is over. I fell over last week and broke my wrist which was horrid.
i had todays infusion through a vein in my foot! I have been feeling down of late and certainly cannot face myself in the mirrorwill dont know what to expect From the CMF ?
been reading everyone’s posts and updating myself on your journeys.
Debra.
xx
Fec three box ticked.
Oncologist has upped my injections to one a day for 8 days after chemo to help white cell count. Also got a lovely hug from her as she was so pleased with the reduction in the tumor. OH thought it was really funny, and that we looked like something out of Saving Private Ryan ready to comence battle. I told him that’s exactly what that hug was about. Strangest thing though when I was in the chemo suite waiting for the drugs I started to cry. I was so angry with myself as there was no reason i could think of and I haven’t done that since Dx.
The pains in my lower arms is Phlebitis (superficial inflamation of the vein wall) cause by the drugs used in my chemo. Oncologist wasn’t too concerned and it should disapear after treatment and that I should use the arm which is the least sore for my next chemo which is what I did.
Mel-A and Kim - Thanks.
Debra - What rotten luck. Could’t imagine having both arms and my leg sore as well. I hope you feel better soon and at least like you say the first part is over.
Lv n Hugs to all angels. Sandy. x
I went to the doctors today as I’m full of a cold and have a sore throat. I felt a bit daft going with a cold, but he said I was right to go and gave me antibiotics. Whilst there I got a second opinion about my sore arm. He disagreed about it being my tendon andsaid the vein was very inflamed. He recorded it on his system as phlebitis, which fits in with what your oncologist said Sandy. I’ve phoned my chemo nurse to discuss the possibility of a picc line as I can only use the one arm for everything and the doctor struggled getting blood today. I’ve got to drop in tomorrow to be assessed.
ECMF cycle 2 day 13
Hi all
feeling a bit more normal now at last. still sick when i wake up in the morning, but apart from that …
thanks for all your advice about the arm pain and lymphodoema. I phoned the BCN. she was very reassuring and said that it’s normal for arm on surgery side to have lots of changing sensationsfor up to a year after surgery. as i can’t actually see any swelling she didn’t think it was anything to worry about, but to keep an eye on it. She reassured me that i should keep doing the exercises 3 times a day( i had let it slip to once a day with chemo and everything). i will take your lead though linda and never let anyone take blood pressure on that side again- then at least if i get lymphodoema i won’t blame myself! thanks for bra advice, Judy will be shopping as soon as! I had worked myself up into a panic and you all helped to calm me down and get back to a what will be will be frame of mind.
Kate hope all went well as can be expected for you and OH yesterday.
philomena glad you’re out and back in the real world.
good luck to anyone starting a new round.
debra, congrats on finishing the nasty red stuf .Poor you breaking your wrist as well! the chemo nurse told me hair is less affected by CMF and may even start to grow back - let me know what happens.
Mel xxx
Fec cycle 2 day 17
PrimroseHill that is great news on the tumor.
Mel A you were right to go to the GP that is how I started on Saturday morning and ended up 48 hrs in hospital.
Maisiecake, glad you got the arm sorted, but at times you can’t help but use your affected arm. Over the weekend they had to use my affected arm for B/P and bloods as I had an IV in the other arm.
It is surprising how so many of ushave been affected by the painful veins!
Heres hoping the next cycle will be better xx
Kate I hope everything goes ok today.
Mel - I’m glad you are feeling a bit better and managed to get some advice about your arm.
Philomena - they can use your good arm, IV in it or or not. You just have to insist and make them wait till your IV infusion is finished, and if they still say they can’t, it is up to them to find somewhere else to take it from. I had IV in my good arm and they managed to take it. Please don’t let them use your bad arm, you could end up with lymphodema and that is not nice at all. xxx