Hi Shellyface,
So sorry to hear your tumor hasn’t shrunk. Do give the helpline a call and have a chat with the staff here, they’re here to support you. Calls are free, 0808 800 6000
Kind regards,
Jo, Facilitator
Shell,
Not quite functioning mentally yet. I am just hoping for you that surgeon manages to take out all the cancer in one go. If he/she manages to - then at least it will be gone for now. Radiotherapy should also be an option for treatment - if you have not had that yet…
Really thinking about you - this is such a scary disease it really is.
Bright xx
breastcancer.org/symptoms/diagnosis/trip_neg/new_research.jsp Shell - also just spotted this about new treatments in experimental stage for triple negative - in case you want to show your doctor…
Bright xx
Thanks Bright.
xx
Hi shell
There are a number of threads on here about triple negative cancer - and the range of chemos that are available. Just because one has not worked does not mean that all the others won’t work. There are different “families of chemo drugs” and combinations of chemo and different people respond to different variations. There are also a number of trials of new drugs available too. They are often worried about spread to other major organs with Triple negative as it is soo aggressive.
I was dx in March 08 with regional spread to the lymph nodes in the mammary chain and superclavicle. Mine is triple negative and inoperable. My chemo worked very well for the first three cycles and then not for the last three. this was followed by 29 sessions of radio. they are hoping to contain and control it and prevent it from spreading to MO. I am having my treatment at the RM Sutton and they have made it clear that there are a number of options available should they not be successful in containing it.
Hope you get on OK
Regards
Helen
Hi Shell
Forgot to say if you go to the Triple Neg section on this site there is also info on Avastin and Vinorbeline (think thats how you spell it) which are the two new ones they are trialling but there are also other combinations of existing drugs that they can try. Triple negative often responds better to Chemo than other BCs
regards
Helen
Shell, just to remind you I’m under the Surrey Marsden, so do let me know if you have your surgery there so that I can come and visit you with apricots and grapes, goodness know you’ll need them after surgery, I found constipation after anesthetic and pain killers much worse than chemo bung up! remember i said that I couldn’t do what you have with injections in tummy from husband, well guess wot, went yesterday for chemo and bloods were only .6 and should be a min 1 so, my 1st thought was right it looks good for the nine west boots coz that bloody expensive honey has made no difference wotsoever, so that can go back to the shop!, then my 2nd thought, oh no not injections in tummy and yes the nurse did 1 there and then and now Michael has to do the other 4 at home. He did 1st one today and I have to say I’m very proud of him, it’s another talent I’ve discovered he’s got since I’ve become ill,like cooking,washing and ironing it’s amazing wot they can do when they have to!!! they still went ahead with chemo but not sure if they should have done really as I’ve been much worse this time! ~anyway just wanted to to tell you about a friend of mine who is under the Marsden and she’s got a completely different type of cancer, but she is doing very well on a trial drug because they wouldn’t give up on her, so please don’t loose heart and roll on your surgery date! Keep your pecker up!
Caron good luck for your chemo tomorrow, I had mine yesterday as they’ve changed me from Wed to Mon, so am glad it’s out of the way but by having it 2 days early, meant my bloods were lower that they could have been apparently a couple of days can make the difference so now have to have these orrible injections in tum for 5 days! Was much worse this time, even sicker that last time, think I felt worse to as i feel it’s all very real now I’m sat there with a head scarf on looking proper poorly. Hopefully you’ll be better as you’ve had 21 days recovery!! let us know how you get on!
Bright, glad you’re out of hospital and op went well. Best of luck with recovery.
Take care all
Jo x
Bright so glad your back with now !! REST !!! ( hopefully that will be the end of it ! )
Shell please sweetie try not to worry ( easier said than done I know ( wait till you read all of mine ! LOL )
My surgeon told me ALL BC is treatable ( not just him either ! ) and he said even if 1 lot doesn’t work they can chop & change them till they get one that does ! ( I don’t know why I am saying this to you when you have been told it’s failed ! ( I just want to make you feel better )).
Also my surgeon told me that it’s the chemo to shrink it ( so it’s manageable ) then surgery to get it ALL or nearly all, then radio used to mop up stray cells ( not chemo ) then hormone ( if needed ).
AND DON’T FORGET THAT IT’S NOT THE BREAST THEY ARE WORRIED ABOUT !! IT’S THE NODES NO MATTER HOW SMALL !, SO JUST COS YOUR TUMOR IN YOUR BREAST IS BIG ,YOUR NODES ( & U DONT NO HOW MANY ) WILL NOT BE NEARLY AS BIG !.
JO join the club !!! ( scarf club that is ! you are funny though saying you feel poorley now !!) hope you are alright have a rest for a few days !
Soz didn’t finish ( pressed enter too soon ! )
Bright so glad you are back with us ! hope you have a super duper speedy recovery !
I am really confused now as I don’t understand triple negative and all that ???
All I know is that triple negative is not good as it’s not the hormones feeding it? ( so doe’s that mean then that it’s growing of something but they don’t know what ?)
I had a call yesterday from my chemo nurse ( Carol ) and she said she was ringing up to tell me about my CT Scan results ( which I was worried about ! )
Shell already knows they were all clear ( good news ).
Now when they told me how big it was they told me it was 41mm
but it isn’t !! ( I think thats just the core of it ! ! )
Today it was 9 x 7 so it has shrunk already ! The nurse was surprised at it she said it is usually after the 3rd chemo that it shrinks !
She never had my notes , again !!! but she thinks it was 11 cm (thats 110 mm) ( by 9 cm ( 90 mm ) so now I find out it’s a LOT bigger than I thought ! now if Shells is roughly the same size , then mine must be borderline operable also, and I also found out that mine is negative for oestrogen & PH ( I think it was ? ) but they don’t know about the her2 yet either they havn’t got the results back yet cos their wasn’t enough tissue to test ( & they will find out at surgery ).
But I don’t think thats the case as they did 7 biopsys !.
So with this in mind now and Fletchjet says that triple negative that responds better and then stops to triple negative , so I am now worried that cos mine has shrunk and responded well do you think it means mine is triple negative ???
I know that everyone is different and each cancer is unique.
I will write tomoz I am tired Lova Caron x
Good morning ladies hope you are all well today ?
I am gonna ask today when I have chemo about how likely ia it that I am triple negative ,( don’t think they will tell me owt though ).
Jo I forgot to say that I lost my eyebrows !!! I was seeing if they were coming out so I pulled on them and they all came away !!! so I had a lovely bald patch in them ! so it was off with them too.
And have you noticed your arm hurting??? I noticed it the other day and it feels like muscle ache !
hope you feel well after your chemo
Shelly did you know that poor woman in that car that went on the tracks ? ( poor woman ).
hope you feel ok today just look forward to your op ! ( how strange is that looking forward to a op ! )
I am getting ready for my chemo today but I don’t think I will see Diane there as my appoinment is 10am and hers is 1pm so I will probably be gone.
when I saw the chemo nurse I told her that I was really dizzy ( she said that side effect is common ) even more than I am already .
I have to make a lasagne before I go for tea so I had better get a move on !
see you later Love Caron xxx
Bright hope you are resting today? I can’t imagine having a op then having more on the same place .
Hi ladies,
Good to hear everyone chatting.
have been eating honey on rice cakes. Remembered quickly that I don’t like honey!!!..yuck!!! but will persevere if it helps me avoid hospital.
Bright - glad to hear things went well. I got very institutionalised. Even though I am hospital phobic, you get into the routine don’t you. I kept waking up at 5.30 (if I had slept that is) waiting for my checks to be done and praying that my blood pressure was up and my temp down. I actually started looking forward to the food!!! Worrying!!. I hid from a lot of other patients - seeing them made things too real. Anyway, I was kept in splendid isolation due to being prone to infections etc. Hope you are feeling better.
Jo - my blood count went from 0.3 on the Thursday to 0.9 on the Friday…so it’s true a day can make a huge difference!! It also dropped extremely fast…went fom 0.5 to 0.1 in 24 hrs too.
Shell - do not give up. I was reading some of the trip neg threads and it does sound like there are other drugs out there. Plus the rads will kill things and it is good news that you can have surgery (because you were worried before you might not be able to…so that is a positive).
Caron - my arm has been really hurting. I took some ibruprofen and put heat on it. They should put a heat pad on you during chemo too if it hurts. I think mine is phlebitis probably - to do with the veins being injected with the nasty chemo drugs. Good to hear you are shrinking. Can’t you push for your HER2 test??? Seems weird that they didn’t have enough tissue after so many biopsies?
Anyone got any good webites or online stores for wigs? Feel very middle aged in mine at the moment.
Good luck with treatmens and appointments everyone.
Andie - hope you’re feeling Ok!!
Gailxx
PS
Did some of you say you are on facebook?? I’m on, but haven’t done much with it and haven’t checked it for a while because it’s filled with perky people (I have an online dog that has probably died of starvation by now).
PPS
Jo - People in our positions should not have to wait for lovely new boots! Psychologically, we need treats and cheering up…I Anyway, it has been scientifically proven (!!!) that a good pair of boots or shoes boots the immunity through a greater sense of well being and happiness!!!
Gailxx
Hi Girls
Just catching up on all the posts here. Trying to kill time before I see my surgeon this afternoon. I had my 7th chemo last friday and boy has it hit me hard this time. No sickness but tiredness like you would not believe, pains in the legs and the most awful taste in my mouth. If your tired you can sleep if youre in pain you can take painkillers but what on earth can you do to get rid of this awful taste. Anything I eat makes me feel sick.
I am really worried abouth this afternoon because when I was first DX back in August the consultant said that with the size of my lump 12cm x 11cm, and the amount of inflammation, he could not operate because there was no clear margin to operate into. The inflammation has gone down considerably but there are still a fair amount of red marks on the breast left behind which I know my oncologist is not happy about. The actual lump has shrunk quite a bit. I just hope that it is enough.
Caron I know my lymph nodes are involved but have no idea to what extent. I suppose I have hit the point where they seem to know as much as they need to and me actually knowing fine details at this point won’t make any difference. They - I hope- will deal with whatever they need to.
Good luck with chemo No.2 today.
Shell The Marsden are THE BEST. They will not give up on you and neither must you. Hard to be dealing with but you have no choice but to fight.
For any of you who need to do Taxotere - It is hard but doable. I was so frightened before I had the first lot that I sat with my oncologist in tears. She did her best to reassure me and promised to adjust the dose if need be. I have found that I have had no sickness. It is the tiredness and aches and pains that have caused me the most problems but like all the chemos the effects gradually wear off. I have to give myself the injections and althought they also caused my legs to ache badly they have kept my blood levels up. Before injections the level had dropped to just above 1 this last time the level was back to 3.4. Also on tax my hair is just about beginning to sprout again. It will obviously take months to be in a position that I don’t need a wig or scarf but it is reassuring to see it coming back. Now I would like my eyebrows back please!
My daughter has just phoned to say she is calling in with my baby granddaughter so that will distract me until I need to de- ice the car to head for the hospital.
Love to everyone. Thanks for listening.
Andie
HI All,
back again from 2nd chemo !
I had a bit of a funny turn , I felt very odd so she stopped for a while but I actually think it was me worrying ? and she had to warm my hands up for ages ( she said she’s never met anyone with such cold hands ) anyway I could feel the coldness going round but last time I could feel it just in my arm but this time I could feel it going all the way round and it wasn’t nice !.
I still feel really worried as if impending doom is on the way and I don’t know why ?
I didn’t know that you had to ask for the metoc ( anti sickness ) so I never got any ! so now were ringing the doctors to get some .
I hope my next chemo isn’t as bad as this one???
I asked about the triple negative thingy and she said she’d never heard of it being any worse in negative but if your negative for her2 that means you don’t need the herceptin as that is used to try and make the cancer NOT come back as if it’s positive that means that it’s using the hormones to feed from and thats why if your positive for her2 then you will need herceptin , so that’s good for you Shell then it means it’s not hormone related so you probably wont have herceptin ???
I’m probably babbling on and on and on …
I never finished my lasagne i am going to do it in a mo
I have got involved in study on BC they are going to take blood next time from me and they are testing 20000 people to try to see what causes it and weather it’s genetic’s or not .
Gail I bet your dog is dead now !!! ( you nasty owner ( I am ringing the RSPCA on ya ! ))
Andie good luck with your appointment today hope it goes your way !
Shelly hope you feel more positive you probably will do when you have your op
Jo where ya gone ? how you getting on today??
think of this then I am 1/2 way through the 1st lot of EC !!! ( yippee )
right off to finish my lasagne off Love Caron x
Caron,
The funny turn could have been because the drugs were going in too quickly. I never had that feeling but the nurses warned me to tell them if I did feel that way and they would slow the dose down. I did get the cold feeling on occasions but they kept one of those heat pads on my lower arm and it stopped it - think it’s something to do with the veins (mine were always bad and I have very cold hands and feet). I had 4 lots of EC first and I regarded each one as one less of that particular chemo, then did the same with my 2nd lot of chemo drugs.
Impressed with the lasagne…
Andie - the taste in my mouth was never pleaseant but not that bad. Nurses said people had found sucking frozen pineapple chunks or drinking ginger beer or fizzy ginger drinks helped quite a lot - worth a try ???
Good luck with the chemo etc girls,
hi lizcat,
I feel a bit better now , when you had chemo did you get a strange feeling in your stomach ? as if you know it’s in there ? mind you I can’t have helped myself by not having no brekki ! ( bad girl ! ), I will next time though .
I have finished my lasagne its in the oven now and I am laying on the settee now , I never slept much last night .
So Steve doesn’t have to worry about tea. I did say to the nurse is it going in to fast but she said it wasn’t. anyway it is done now 2 down 2 to go ! ( of this one anyway ).
hope everyone is ok today ? love caronx
Hi Caron,
Never had strange feeling in stomach but I always have breakfast (aren’t I good???) - sometimes cereal and toast or sometimes melon as I love that and if I wasn’t as hungry it is easy to get down and has plenty of water in it !!! I also wore seabands on my wrists for anti-sickness. Kept them on for the 5 months I had chemo and am convinced they worked as I never felt sick - may have been psychological but who cares as long as you don’t feel sick ???
Liz x
Hi guys,
Good to hear from you Andie. Good timing too. I start Herceptin on Monday and Tax on Tuesday and after reading lots about both of them…am petrified! This last FEC hit me hard (and included hospital) and I am just dreading feeling worse. Bit of a baby at the moment. Fed up of being poorly and not fun Mummy! Did you have a blood test before your first herceptin?
Everyone - I don’t understand all this nodes stuff. I know I probably have positive nodes, but haven’t had a biopsy on them or anything. Every so often I feel something swollen int he armpit and i presume this is the nodes??? Do they check them in surgery and remove them??? Don’t quite understand them. being a bit thick. I’ve heard of a sentinel node biopsy, but haven’t had one.
Caron - well done on getting through your next chemo. I’m very impressed you cooked!!! Wow!!
Gailxx
Hi
Wow such a lot to read tonight. Hope all you girls are fine and doing ok.
Andi- how did you get on with your appointment,hope it was a reassuring time,have been thinking about you.
Jo- it would be great to see you if i have my surgery done at the Marsden in Surrey,it would be nice to put a face to the name.lets all get on face-book and see each other i say…
Gail - Good luck with your Herceptin on Monday. I had to have 3 separate biopsies before i found out i was triple negative.(sample was always too small). When i had a scan on my breast they took some fluid from my lymph nodes and then told me they contained cancer,that’s how i know i have 3 at the moment.
Helen - thanks for your information about triple negative cancer,it scares the hell out of me.I have had 2 x AC chemo,2 x Taxotare chemo and even 2 x Carboplatin and Vinorelbine chemo (which are used for other cancers) and not one have made a difference,the tumor is still growing, its about 15cm now.My onc and the prof at the Marsden have both said i wont be offered any more chemo to try.I will have rads after surgery. I feel so deflated…
Caron- sorry to here your not feeling too well,i get a cold feeling going up my arm when the chemo goes in and it aches days after too…Keep resting.
Bright - I hope your feeling ok today, rest up…
My 2 friends took me shopping today for nightwear for the hospital, i was only out for 3 hours(and we had lunch)i couldn’t wait to get home,i am soooo knackered,the chemo from Friday must be catching upon me…I did manage to get some new slippers and 2 button front nighties, not really me but they will do…(I’m more of a Little Miss Naughty)Lol…
((((hugs)))) to you all.
Shell.xxxx
Dear Gail
You may find our booklet called ‘treating breast cancer’ helpful to read as it contains an explanation about lymph node removal and sentinel node biopsy, you can read it via this link:
breastcancercare.org.uk/docs/bcc08_treating_final2_0.pdf
Hope this helps
Best wishes
Lucy