hi Sooz
study sounds interesting!!! i wonder if you’ll get selected!! could make for an interesting blog or something!!
how do u feel about your treatment plan? and the whole ‘all’ lymph ndoes removed situation?
i’m still waiting for my appointment with oncology to come through. I’m back drivng though which feels like such a big step so i’ll be venturing to the office for a few days this week!!
hope your having a lovely weekend
Netty x
Hi All
Sorry I haven’t posted for a while but I had chemo round number 2 on Thursday and have been feeling pretty rough since. Haven’t really got out of bed in the last 4 days. If it’s the same as last time, I should start to feel better in 2 or 3 days. SoNetty, I’m afraid I have just cancelled my Look Good Feel Good session tomorrow at The Mustard Tree, I’m just not up to leaving the house at the mo. I hope you have a good time on it though. It’s great that you are back diving again and going to the office this week, it made all the difference to me when I got back to work - a bit of normality!
Sooz, sounds really interesting being invited to take part in the research/study - any research into seeing whether chemo isn’t always necessary sounds good to me! If you do start chemo on the 26th, have they told you which chemo you will be having?
foxyferret - so very pleased for you with your scan results, absolutely brilliant news.
Gg23 - glad you and Netty have been able to meet up to be able to chat to each other because you are both going through it.
I will check how you are all getting on in the next few days - when I am feeling a little bit more human!
Jess xxx
hi twinnumber1 - good to hear from u. but i am sorry to hear that your feeling so lousy!! i’ll let you know about the session!! they phoned to ask me my skin tone!!
i hope you feel better soon!
hugs
Netty
Hi all you ladies out there I had ms and full ax clearance on 6 march I’ve not been able to do the exercise because warfarine causes more bruising and swelling every time I try .has anyone else had this problem? I also have other health issues which complicates everything ,surly there must be others like me.
thanks for listening
jose xpXGM
Hello ladies, I have been lurking here as live at the opposite side of Devon (but don’t know anyone with BC locally). Had Mx and ANC 11th March, and struggling to regain range of movement. I don’t know which exercises you were given Jose, but I wasn’t given any so all the information I have came from Google. I did find I didn’t get on with some of the exercise leaflets I found and have ended up doing the ones on the Haven’s Preventing Lymphoedema DVD (which they will post free of charge). They are gentler, and the nurse practitioner explains why you do each of them and says only to do what is comfortable for you. I have found that my ROM is improving, albeit very slowly. You will also find that gentle walking and opening and closing your hands helps, since the lymphatic system has no pump and relies on the movement of your muscles to keep going. On Friday, I am going to see a Pilates teacher who does rehabilitation work and hoping she will be able to help. It’s expensive, but the hospital where I had my surgery is over 100 miles away so it works out cheaper than going back to see their physio. Good luck with your exercises. Hugs. Margaret
hey Jose & sdfmeg,
i got a leaflet from the hospital about exercises, i’ve adapted them slightly as i found that the muscles above my elbow were tight and the exercises didn’t stretch that part.
i’m back driving, but then i didn’t have mx. just lumpectomy and ANC.
i hope the pilates helps sdfmeg, Jose - have you asked your BCN for advice regarding exercises?
Netty xx
Hi all
Twinnumber1 are you finding the chemo really awful? I am getting worried about it. My chemo is set for 6 sessions of FEC 100, not that I really know what that means, whether that’s the usual, high, low or what. When you feel much better definitely re-book your LGFB session, had mine today and it was lovely, some great tips and fantastic goody bag and soooo nice to meet others.
Netty how did you find it?
Hi Jose/sdfmeg
Not much use to you i’m afraid, I had mx with reconstruction and lymphnodes removed, after op I had visit from physiotherapist (whilst in hospital recovering) giving me instructions on exercises and a booklet to take away. Movement at first very tight/limited but everyday got slightly easier, I kept the arm moving as much as I could. Definitely speak to your BCN they will help you answer your concerns.
Sooz xxx
Hi
Sooz - don’t be too worried re: the chemo, it’s not great but it’s not impossible. Everyone suffers different side effects, some people hardly suffer any and who manage to go to work throughout their chemo. I am on TAC chemo which is different to your’s - a lot of the ladies on the Spring intoChemo in March thread are on FEC 75 chemo so you might want to look at some of their posts. My side effects on the first cycle were different to the side effects Iam suffering from on this second cycle. This time my main side effects are feeling nauseous (but the anti sickness meds stop you being sick) and feeling very low/emotional. But I am already getting better so I basically write off the first week but then I am better for the last 2 weeks.
Netty - let us know how you got on yesterday at the Look Good Feel Good session.
jose & Margaret - I had a lumpectomy and SNB and just did the exercises given to me by my BCN which worked very well.
Jess x
Hi everyone,
Thanks for making me feel welcome.
Netty - I spoke to my BCN a couple of weeks after my Mx. She offered to send me the exercise leaflet, but then said it was the BCC one (which I had already printed from the website).
Sooz - how long did it take you to regain full ROM? Mine is getting better, but still nowhere near as good as it was a month ago. And it hurts.
I had my chemo first. Should have been 4 FEC100, 4T. I think FEC 100 is the strongest one, and they may reduce it to FEC 75 or 50 if they need to. I had three FEC and four T. It wasn’t too bad, but had to stop the FEC early because it caused tinnitus. Am told this is unusual. I found it helped to keep a diary, because for me the symptoms were similar each cycle and came on around the same time. So, I got thrush during T1 but then avoided it for the other three cycles because I took meds the day before symptoms would have started. I stayed off work for the whole of chemo, but if I had had an office job I would have worked through weeks 2 and 3 each time.
I am booked onto LGFB session in Exeter on 14th May. Anyone else doing it?
Margaret xx
Hi all,
The LGFB session was good and i was amazed at the goodies you got - really not what i was expecting! it was nice to meet other ladies, and there was mix of ladies at different stages of treatment.
like you sooz i’m nervous about the chemo too. i’m still waiting for my oncology appointment to come through.
Twinnumber1 - i’ve PM’ you - did u get it?
sdfmeg - i think the leaflet is maybe to basic, but i guess they have to start some where. i’m going back to an exercise class next week so i’m hoping that will help. Driving has also helped get some of my ROM back.
A diary of symptoms sounds like a plan. I’ve been keeping a general diary about my experiences so far - found it quite cathartic to write down how i feel etc.
xx
Hi everyone,
hope you are all keeping well and managing OK on the chemo.I have only just started driving, and can cope with ten miles each way but think any more would be pushing it. The Pilates is helping. I’ve had two lessons so far, with the first one being an assessment. Apparently, I have been overdoing th exercises. Apparently, you just go until you can feel the tug, breathe out whilst relaxing and then breathe in pushing it all a tiny bit further. Last Weekend, everything seemed to tighten up again, but I now feel as though I am winning again. Goodness knows when I will be able to regain the movement I had six weeks ago… At least it’s not working out too expensive, as I only see her envy other week and have managed to find somewhere free to park (not possiblin on hospital visits).
Off to get my prosthesis next week. Not sure if I’m pleased about this or not.
Hi Margaret
I posted last night, successfully, but when I got back from hospital at lunchtime after chemo3, the post had disappeared! Grrrrr.
i’m glad the Pilates is helping. As for getting your range of movement back, I only had a WLE so can’t help. I hope it doesn’t take too long for you.
Netty & Sooz - how are you both. Have you had dates set to start your chemo? it woud be good to hear how you are both getting on. Netty, I did reply to your message about the LGFB session, I hope you received it ok?
Jess xxx
Hi all
sorry its been a while, have not been in a good place. But back driving and my only limitation is my husband stopping me from driving to far just in case its to much!
back to work but at home part of the week so life is getting on nicely. Well until i developed a cough and pulled my back muscles from coughing so much… saw GP in the end, so have antibiotics to clear cough. Have also had a chest x ray and got to go back for a CT scan to make sure it is just a cough. drama drama drama! lol
The long and short of it is that i am now back in a far more positive place, i’ve met with oncologist, and i start chemo on 24th May. I’m having 3 lots of FEC and then 3 lots of T with Herceptin. I said no to cold cap and i am now ready to take this blasted thing on!!! woohoo!!!
i hope you are all doing well … and feeling in a good place
Netty
Hi all
Cant believe its been a month since last post! Im not gonna say thats cos time flys when… because its hardly been fun. I know where you’re coming from Netty, I think it gets to us all at some point, good to hear thats behind you now.
Well, I was told I needed to have a Lymph node clearance operation. I already had 4 removed when i had the mastectomy and 1 of the 4 was infected, therefore a slim chance further nodes could be infected.
Dont know if you all remember I was offered the opportunity to join a trial currently running called OPTIMA, basically its a test on the tissues (tumours) they removed - (coz theres none left in me now right!!!) to see how the Chemo reacts to it, apparently research shows that not all tumours will have any benefit, so some women could go through having Chemo (Standard treatment given) unneccessarily, but this test is very expensive, its available in USA and here in the UK if you can afford it, but not on the NHS yet.
Anyway I was told that to continue with the trial I needed to have the node operation. I looked into this and once again there was doubt that this operation made a real difference and there was an element of uncertainty to it, with (in my opinion) high risks of suffering lifetime after-effects, i.e. lymphodema, cellulitis, (a risk I wasnt willing to take as I do a lot of sporting activity) had a long discussion with the consultation/sugeon and its was agreed that I may be better off not having it done. So I went back to the Research Nurse to tell her, and too my surprise she tells me I can still go ahead with the trial without the OP, I was delighted!
Been waiting and waiting for results to return, was told yesterday they have returned and I am in the Group that will need the Chemo! so blood taken yesterday, and chemo starts tomorrow 6 x FEC100.
Today I had an appointment with ‘FORCE’ in exeter to see the WIG specialist to select and get fitted with a wig - SO SURREAL, just seems crazy. Got one, so thats all sorted now.
Just for info… At the pre-chemo appointment I asked about the 100 (FEC100) does that mean its a high dose? I was told no, it relates to size/height that you are. (I am 5’ 11’)
So here goes, tomorrow PICC line being installed and first dose of FEC100, I am a little scared.
Hope all is going as best as it can for the rest of you.
Sooz x
Hey
Sooz - how did the chemo session go??
i’ve been asked if i want to be involved in herceptin trial… giving it serious thought as its administered quicker than normally.
i have my wig appointment next and my pre-chemo blood tests, so ‘treatment life’ is ramping up again after the calm down after the op. How well roll on september when chemo should be over!!
xx
Day 1 of Chemo was actually OK, picc line went in with no problems, get a little sting for about 5 seconds and thats it. Then off for chest X-ray to make sure its in the correct place.
One of the drugs in the FEC100 is RED, and turns your urine red, quite a shock when you go to toilet, doesnt last long though.
Been given an injection to give MYSELF, 24hrs after the chemo, to help promote the white cells, I am so bad with needles, I can’t do it, so was lucky to get a quick appointment with GP nurse booked.
Day 2 Again feeling fine! woke early hours with a blinding headache, then went back to sleep, but overall, so far so good!
ONE DOWN 5 TO GO!!
(I like the description that someone else wrote "its like the PACMAN game, running around your body ‘munching’ and clearing up all the little baddies)
xxxx
Why does there not seem to be any members from the North West area you all seem to be from the South of england are there any ladies from just outside Manchester who would like a chat?
I live in manchestjus just outside stockport we do appear to be in the minority although I was born in the south west
Hi Girls
Been quite a while since anyone posted. I do hope that you are all getting on ok and that your SE’s are small ones.
Hope that those of you attending the same hospital are staying in touch, if not on here.
I do think of you all and wish you well. I am lucky enough to be NEDdy at the moment and hope you all join me there as soon as possible.
Best wishes
FF
Hi foxyFerret
1 week after first chemo treatment, and i don’t feel quite so tired today. Means i might actually get some work done today!
Hair is tingling to so wondering if that is the sign that its getting ready to go!
SE’s have passed for the moment, just in time to enjoy the weekend with hubby xx
hope everyone is ok xx
Netty xxx