Hi ladies, sorry I’ve been off the radar for a few days. This has been my good week and I’ve been trying to pretend I’m normal for a wee while. Next FEC treatment is due on Thursday so my “normal” time is nearly up for this month.
You asked about Herceptin use in USA. As far as I’m aware they give it continuously while there are no heart problems but I’ll check with my mate. As you probably know one of the problems with Herceptin is the effect it can have on the heart and I think this is the only limiting factor to it’s long term use (as long as you can pay for it).
Theresa, sorry to hear about your worry. I hope it comes to nothing. [[hugs]]
Laura, you asked about blue veins. That happens to me. It scared the s**t out of me the first time because it wasn’t one of the things they tell you to expect. It does settle down after a day or so but I do bruise easily as well.
My friend from the USA is coming to visit from Friday until 14th. I’ll pick his brains mercilessly and report back anything useful. His wife and I are going off for a short break so hopefully the weather will hold.
Jan
Hi Ladies
Saw my oncologist this morning who examined all the lumps and bumps that were causing me to think Skin Mets and she assures me that what I have is normal. When I asked just what should I look for as far as Skin Mets are concerned she was honest enough to say - Anything out of the normal for you. It does sound as if there is no uniform answer and we just need to be alert. I think all IBC ladies are even more alert than others with other forms of BC.
As a celebration of a 6 week gap before she wants to see me again I have booked to go to Dorset for a few days at the beginning of July. OH and I really could do with a rest away from London and the hospital. Just watch the rains will come!, but I don’t care.
Theresa I hope you are worrying about nothing but apprecaite that telling you not to worry is a useless exercise.I am thinking of you
((((Hug))))
Andie
Hi everyone…
Saw a gp this morning and she agreed to send off the email referral… got a phone call off the hospital almost as soon as i got home and they now have a new one-stop clinic on a saturday - so i’ve got an appointment for that on saturday at 9.40am… the bcn had said it would be the quickest way to get the tests done…
so fingers crossed…
Theresa
hi all just a question for anyone as newish to this as you no i might have ibc just wondered if anyone could help some days my breast is redder than others does anyone else have this i dont no if i should be concerned or not it just seems a lot redder today than normal due to start chemo next wk i hope you are al doing ok ans was going to say enjoying the sun but its dissapeard today t c laura xx
My breast was pink last year… the first day i noticed it was pink it felt warm to the touch - but no worse than on an average hot day (if you know what i mean…) it took two weeks for me to be seen at clinic and diagnosed and during that time it got much hotter - you could feel the heat through my clothes as if i had a hot water bottle there or something… But once i started chemo - the heat and swelling went down straight away…
Theresa
hi rhapsodyangeli
thanks for your message i no what u mean i feal like im carrying a hot bottle all day nice in the winter i exspect yes they told me chemo would stop all that bit nervous about chemo just not sure how i will feal but im sure it will be fine t c laura xx
Theresa, at least the wait won’t be long for you, will you get results straight away? I don’t know how it works in UK. Fingers crossed for you, I will be thinking about you on Saturday and pushing vibes across the airways xxxx
Andie have a good weekend in Dorset.
Laura when are you starting chemo? You will find once you’ve had the initial dose you will feel happier in that you know what to expect, but try not to be too scared, most of us find that chemo is very doable, not nice but something we have to do. I remember that feeling so well of being unsure of what to expect, and found on the actual day of chemo it went quite smoothly. Have you been given steroids to take before you start?
Hi to all
Love Carole x
peacock hi no not yet im going at 930 tomorrow to have the talk about side affects then i will get my date then yes i no once it start will prob be fine just the unknown i spose off out today with hubbie suns out but windy
hope everyone else is doing ok xx
Hi Laura
Chemo can be daunting but try and remember that not everyone gets all of the side effects, and they come in varying degrees. I consider myself lucky in that although I had chemo(4xAC and 4xTax) in hindsight I did not have it nearly as bad as some people. It really is doable. There is a good thread on the chemo forum link with many many helpful tips. Try to keep an open mind and remember we will all try to help as much as we can
Andie
andie thanks for your message ive been for my talk today and feal a lot more positive the unit is nice all friendly and helpfull so im sure i will be ok im going to ry the cold cap just once to see how i get on if not well i can say i tried it off for a haircut as ive long hair less to come out hope your ok have gd weekend xx
hi to peacock and anyone ive missed hope your all ok xx
Hello ladies,
Bit colder and rainy today. Children were due to do a sponsored walk at school but it was rained off at 1.00pm! I wasn’t looking forward to sitting on a cold chair tallying laps so quite relieved! Supposed to happen on Monday now so hoping the sun reappears.
Had a clinic appt with my local onc (saw his reg) on Thurs. Not a particularly good visit, very new and knew nothing about skin mets by his own admission, so a frustrating week really. I’ve had a throat infection since Monday and have had no voice for 3 days (hubby thinks it’s sooo peacful) so feeling a bit sorry for myself I guess. Never mind end of the week today, can only get better.
Laura hope all goes well when the treatment starts. Have they confirmed a dx of IBC yet?
In my local hosp they treated all bc ladies having chemo on the same day. It made everything easier, nice to chat and compare notes etc and the chemo nurses were lovley. The hair part is difficult so I do hope the cold cap works for you.
Carole, replied to your Q on bcpals re exercises. Should have siad I certainly did them religiously for around 6 months then eased off. My surgery was in Nov 06.
Theresa, not heard from you for a few days, hope you’re ok.
Jackie x
Hi Jackie - I’m fine thanks… got my appointment at the one - stop clinic tomorrow morning - so will let you all know how it goes tomorrow afternoon…
Sorry your onc appointment wasn’t much use…
Laura - hope that you don’t get too many chemo side effects
Theresa
hi mabel and ladies
thanks for your kind words no dx yet i dont think ill def know to op all they are saying is suspious as got all the symptoms bcn told me grade was 2 to 3 but onc put 4 on my chemo paper so am worried but they think he did that to make sure i got chemo quick they didnt want to do another biospy as wld delay chemo all i cant say is i def have 2 lumps so hopefully will know more in time am awaiting scans hope you a;; have gd weekend chat soon xx
Laura - did they also scan your lymphnodes in your underarms…? Are they planning on any other scans - even though they are starting the chemo as soon as possible…? I had a bone scan, CT scan, chest xray etc at the start…
rhapsodyangel hi i had one lymphnode looked at with needle but was pleased to say was all clear im booked in for a bonescan also ct scan chemo starts tues so not sure when scan will be will kp u informed…
Hi Laura
Glad that you are feeling a bit better now that you’ve met with your onc team, i am confused about your staging though, you mention 4?? Hope your first chemo goes ok, one tip that might be useful is to keep drinking ice cold water if you can, even better is an ice lolly or ice cubes throughout treatment, it seemed to help me with any mouth problems and eat as well as you can before you get the treatment. I felt ravenous the day after my treatment, thanks to the steroids I think.
Jackie, hi and thanks for your post on BC pals - I just wanted to check if its normal to feel so tight across the chest and scar area so long after mx. Sorry that your local appt wasn’t too good, I also replied to you on BC pals. If its any consolation, our weather too today has turned rainy, for once I am glad as it was so hard to keep all my veg plants watered.
Theresa, sending you lots of hugs and good wishes for tomorrow, I hope all is well and it turns out to be nothing. I will be thinking about you tomorrow morning.
Yesterday I didn’t have a good day, it was the year’s anniversary of my dx, I slept really bad the night before and just had to go back to bed and wallow in self pity after I got our daughter off to school. I can’t believe so much has happened and my life changed so much in a year. If its any consolation to the newly diagnosed, it has gone quite quickly and most importantly I GOT THROUGH IT! A year ago I didn’t think I was going to. Hope that helps some.
Take care everyone, let us know how it goes Theresa
Love Carole xx
hi peacock your confused lol so am i i was told by bcn my stage was 2 to 3 but today the chemo nurse said i had 4 on my chemo papers so i have no idea she said onc might have put a 4 as they wanted to start chemo asap and i prob wldnt no to i had op im awating scans so hopefully someone will let me no something soon
Hi - can you look at this thread…?
breastcancercare.org.uk/forum/viewtopic.php?f=17&t=22236
i’m quite worried about this lady - when i first noticed my IBC it was was quite advanced and the changes were very noticable - but i know for at least a couple of you it was more subtle… Carole - i can’t remember did you have a nipple discharge…? (i didn’t…)
Theresa
Hi Theresa,
I have posted on tessamae’s thread this morning.
Love
Jackie x
Hi Theresa
I too have made a posting after Jackie, how kind and thoughtful you are to be concerned about this lady with what you have going on.
I did have bleeding from my nipple, about 2 - 3 weeks after I first noticed the hardened area, this is what prompted me to return to my doctor, I couldn’t go without wearing a dressing inside my bra. But my rubbish doctors (x 5) still didn’t dx cancer and yet I believe this is one of the classic symptoms. I know a clear or whitish discharge could be infection, but this was actual blood.
Will check back from time to time to see how you got on today
Love Carole