Thanks Fiona. That link was helpful. However, I am a week late but still getting period pain without a period. If I don’t start by Monday I will call the nurses at the Oncology Department and get their advice. Thanks again. Snoogle. x
Hi Fiona,Pat,Jo,Julie & anyone else I’ve missed.
Thanks so much for your words of encouragement,it’s really helped me get my head sorted,yes I’m still scared but the phrase “it’s do-able”
is my new mantra. I’ve still got one more EC on the 5th May,then 3 weeks till the 1st Tax,but I’m feeling alot more positive about it now.
Keep me posted everyone as to how you’re getting on,
lots of love,
Helen x
Hi LittleH, I beleive that doing anything for the first time can be a little unnerving. The best advice I had was to be aware of the side effects, treat them accordingly and just go with the flow. snoogle x
Hi Everyone, Sorry I haven’t posted for a few days. I’m on day 18 now of my last TAX and most of the side effects have gone apart from feeling more tired some of the time. As the others have said it is all do-able.
I have a question some of you might be able to help me with I have had chemo first so my next step is my op- a mastectomy with full node clearance. I am wondering how this will affect my arm afterwards and if it will be really stiff etc? I am left handed and it is on my left side.
I had am MRI yesterday and have my pre op appointment next Tuesday my op is on 11th May so starting to get nervous.
have a good weekend
pp
x
Hi everyone, hope all okay. pp, I had op first, then chemo and now rads. I had full node clearance - right side. Arm was a bit stiff and sore but they give you exercises to do. If you do those as directed, it really helps to get the range of movement back. It’s really not too bad, you just have to not lift heavy things or do repetitive movements ie ironing - get someone else to do it! Part of my arm - top side, is still numb as is part of my underarm. Feeling may or may not come back to those bits but it doesn’t affect being able to use the arm at all. I wish you the best of luck with your op, you’ll be fine. When I had my op i was on a ward with 2 ladies, both had double mast. They were in very little or no pain, up and about within hours and home after 2 -3 days! They had drains in which didn’t restrict them. Make sure you take some baby wipes in, and plenty of reading material! I used the hospital gowns as they made it much easier for drs to examine, and for the drains. It’ll all be over b4 you know it. As long as you do the exercises, your arm will be fine and soon be back to normal, obviously things take time and you have to heal. Enjoy yr weekend, love Pat x
Hi There all,
I am left handed and have already had full mastectomy and node clearance. My op was January 06th. I know have more or less full range mobility. I followed the exercises and that really helps. My arm has pockets of numbness but i can live with that. Oh and lots of moisturiser - i used lots of aqueous cream keeps it supple too.
Good luck, i am other way round had the op now having the chemo.
All the best
Linda
Thanks Pat & Linda you have reassured me a lot. I was also told by my bc nurse that as I am having full node clearance then rads I am at a higher risk of getting lymphodema - something else for me to worry about!! How long were you both in hospital for?
Thanks for the advice about the baby wipes I have started making myself a list of things to take in so I’ll add it to that.
love
pp
xx
Hi all
Must say again, I love this thread, it’s made so much difference to me with all the tips and experiences both pre and post my first tax. I’m now day 5 and have just felt really rough, bit flu like, all week, I actually felt like when I was first pregnant with my 2 yr old! Bit nauseous and very tired. I have started with a sore mouth for which I’m using the recommended on here corsodyl but today my scalp has started to hurt. Anyone any suggestions for nice soothing things for it? I washed my hair this morning and even gently rubbing with the towel was painful.
I had mastectomy and recon Feb 08, lymph clearance March 09 due to local recurrence. I have regained complete range of movement in my affected side, the exercises and general usage really help. As Linda said there are numb areas but they don’t affect movement.
Best wishes to all
Kirsten
x
Hi PP and all,
I was in hospital from Tuesday to Friday, so not long. i am at risk too from Lympohodema but have been fine despite burning my arm a week after operation putting something in the oven.
Kirsten, i am same as you, had first tax on Tuesday, I am just so very tired, my calves ache and my mouth is sore. I am also on GCSF as well are you?
Linda
Hi Linda and all
What is GCSF? There are so many abbreviations, I get a bit lost! I’m having tax and cyclophosphamide and oral anti sickness to go with them.
Kirsten
Hi thought i had replied but couldnt of submitted
Granocyte is brand name. It is to stimulate neutrophils as taxotere knocks immune system out. I have five injections over 5 evenings -
OH is giving them to me and i am being very nice to him…
This has a list of side effects and it is difficult to know at moment which is taxotere and which is gcsf. I know my calves and mouth ache like mad but i do feel slightly better today. i am finding it difficult to eat a lot which for me could be a good thing.
All the best
Linda
Hi, I have an injection called neulasta one day after the chemotherapy. My dear husband injects me. Fortunately he is very good at it. I was such a wuss the first time, but second time I was a lot more comfortable. The side effects when it kicks in are bad for me and I have seriously bad pain in what felt like every bone in my body and just have to give in and crawl into bed. It happens when my white blood cell count falls and the drug kicks in to stimulate the bone marrow. I haven’t heard of gcsf before but wonder if it serves a similar purpose. However, like most of the drugs most of us are taking the effects can be short lived and knowing that helps me cope. However, I do have ongoing breathlessness and extreme tiredness, but I am trying to learn to live around those. Hopefully at the end of the day the inconveniences will be worthwhile! Love to all on this gloriously sunny day. Daughter at guide camp, son spending the day with friends. Chill out time! Snoogle x ps sorry if I ever end up repeating myself, blame it on the chemo brain!
Hi Snoogle
Yes I am sure GCSF is similar to Neulasta and neutropen? I have seen them mentioned on here and other websites. All boost yr white blood cell count.
I am thinking about going and lying in the sun. Nothing like natural vitamin D to stimulate the white cell count is there?
All the best
Linda
Hi There,
Dya 16 of my first Tax and I am completely symptom free now, The ulcers have now healed and I’m eating like a pig! got a week to build me up for the next one. I lost 4lbs in the first 2 weeks of Tax, between stomach pain and then sore mouth and ulcers. I have kept a symptom diary which should let me compare with next tax and be a guideine as to when all the side effect kick in…
need to ask about the black nail varnish? I thought people put it on to disguise the discoloured nails, but learned last night that this isn’t true… it’s to stop uva getting through to the nail bed and causing a reaction which then makes them discoloured and fall off… Is this common knowledge? I know a lot of people do paint their nails black but didn’t know the real reason.
I was also told to keep out of direct sunlight and wear factor 50. The skin is more sensitive on chemo and more susceptible to harmful rays…
Also I haven’t had any injections for white cells and I’ve had the flu like symptoms and aching bones and really sore mouth, I’m getting herceptin at same time as Tax and wasn’t sure if it was Tax or herceptin that was giving me side effects but I think it’s Tax.
Between day 7 to 10 my temperature really fluctuated and would go very high but thank God it never reached 38deg. Back to normal by day 14.
Best wishes
Fiona xxx
Hi Fiona,…Re the black nail varnish…my chemo nurse advised me to do it to stop nails falling off and almost 1 week post Tax 2 it has worked. Yes it does reflect UVA.
I put hard as nails on first, then 2 coats of black, (dark brown/plum is as effective) then another coat of as hard as nails.
I agree with you about factor 50. Chemo skin ultra sensitive!
Good luck. Lynn x
Hi All
I guess your postcode decides exactly what treatment is given (Re GCSF etc). I think in this area they wait until the boost is needed before giving anything extra.
Fiona, it was good to read your message. I am now hoping to follow your example and have a couple of weeks being “normal” before the next blast.
I am definitely off to the shops tomorrow for black nail varnish, might treat myself to a manicure to start the look off!
All the best
Kirsten xx
Hi Everyone,
This thread is so useful,I’d been wondering about the black nail varnish too,will definitely get some this week in readiness,and some factor 50,if I can find it.
Non of this has been mentioned to me by my oncologist but I’m probably abit premature as I’ve still one more EC before my TAX starts.I’m having surgery after my chemo,I had an ultrasound last week and the tumour is shrinking so this Tues I’m having a marker inserted to pinpoint the tumour in case it disappears altogether,anyone else had this done?
Daft question coming up…if you have a problem such as really bad mouth ulcers who are you supposed to contact? your own GP? The only other numbers I have are on the "I’m on Chemo"card you’re supposed to carry around with you,but I thought that was just for emergencies.
Hope you all get a good nights sleep,
Love Helen x
Hi all - i didnt know abou fact 50 - i did sit out in garden yesterday but only for about half an hour and had factor 15 on. No damage, made me feel a little better. I had my feed pedicured with black nail varnish and they feel fine. my nails on my hand however are hurting a bit.
I think the GCSF is causing most of my se’s as they peak in evening. I have finished that now so will see. I think you would go to your GP for mouth ulcers, Helen as you entitled to free prescriptions now. I dont have ulcers, the insides of my mouth are ultra sensitive so having to be very careful what i eat.
All the best
linda
Hi Helen,
I would get in touch with your doctor is you have any niggles. I had 8 mouth ulcers last week and was down to eating puree’s and soups. I phoned the doctor and put in a request for difflam mouthwash (due to advice from other ladies on this site)and was given it straight away. I should have maybe spoke to the doctor as I’m sure she might have had something better. She dealt with all my stomach problems the week before, prescribed me 3 types of tablets to get on top of it, which it did. The chemo suite are good for advice and especially if you get a high temperature, They always encourage you to phone, but your GP is just as good at dealing with side effects. I’m going to phone my GP today for advice on continuing on my stomach tablets as I am keen to avoid any problems next week when I get chemo no 2. I am going to mention ulcers too as she’ll prob give me stuff to have in just in case. My poor bathroom is like boot’s the chemist!!
I have been sleeping really well for the last week or so, but the night sweats are horrible, woke up dripping last night. Don’t know if that’s a chemo side effect or hormonal? would be so pleased if my periods decided to dissapear whilst on chemo (one less thing to deal with!!)
Sorry Helen, I had WLE for 13mm tumor in Feb 09 with 5 nodes removed, which were clear. ER+, HER2+. I’m on a trial of 3 tax and herceptin then 3 fec, rads and herceptin for a year, so I’m all different from you ladies, who have had fec first. Stick up a post about your tumor marker, I’m sure you’ll get replies to help you.
Best wishes
Fiona xxx
Hi Fiona,
I have been having night sweats too. Also, my periods do appear to have stopped and i am over a week late, although not the pain that accompanies them! Feeling slightly uneasy about it so have bought a pregnancy test kit. I am having tests on Friday for which I have to sign to say I am not pregnant, so just putting my own mind at rest. Will do the test tomorrow when my husband is around in case its positive. I know that it is sure to be negative, but such a thing has been made about not getting pregnant. Urgh!
My onc prescriped an antiseptic mouthwash with chlorhexidine gluconate in it. More of a prevention thing as I had corrective surgery about seven years ago whereby the inside of my mouth was cut open top and bottom, and both jaws broken and re-set and this is likely to be a weak area when it comes to side effects. I have used it regularly and although I have had a sore mouth I haven’t had any ulcers - yet!
Know what you mean about the bathroom turning into a chemists! 
Best wishes to all, Snoogle x