It’s Kent, Jenny. Everyone who has been on one, seems to have only good things to say, so am really looking forward to it now! Just got to get through this week at work.
Kay x
Kathryn, I am really sorry to hear that you’re having such problems with your breathing. I hope that your drugs are sorted promptly so that you can get some relief. I’d never understood how scary it was to have breathing difficulties until my lung mets started to play up this year, and mine don’t compare to yours.
Snoogle - that is great news, especially considering your horrid double diagnosis. I’m really pleased for you. Long may it continue.
Jacksy, pleased that your CT is showing stability. Love that word. How long have you been on Herceptin? Do they ever suggest a break from it? I’m sure I’d read on this forum of people doing that and their MUGAs reflecting it. Or maybe I was hallucinating. The good thing is that you’ve not got any symptoms - my onc always talks of the imaging/data plus the symptoms to give the real picture. Fingers crossed it’s a one off.
Kay, I’m glad you thrashed things out with the counsellor and got some clarity. It’s bad enough to have this blasted disease without having additional guilt. I don’t think you should be cross with yourself for feeling trepidation about the future or cautious about celebrating wildly. It’s ironic how we thank ourselves for small mercies, or consider ourselves “lucky” even though we are blighted by such an indiscriminate disease! Now, when you return from the Odyssey trip will you spill the beans in a PM about these “surprise” things they do. You’ll never catch me in a cagoul so I am not likely to go on one myself, but I am really curious… And I shan’t tell, cross my heart. I’m glad you’ve got trips to look forward to.
Manon, I have visions of you cycling barefoot through fields on your bicycle with a baguette popping out of your wicker basket (I know, I know - next you’ll be tending sheep). Indulge me. Anyway, exactly how slowly are you cycling? I feel like a slug in comparison to you and Kay and Jacquie.
Anyway, I must dash and cook something nice and have a strong voddie. Chemo and the frigging frozen cap looms - this time I have asked to be drugged beforehand to make it more bearable. It gives me the heebeegeebees just thinking about it.
Ciao ciao
xxx
Ripley,
Hope it wasn’t as bad with the drugs beforehand.
Have the nurse coming around tomorrow with the herceptin, so much easier than going to the hospital although it does mean I still have two trips. One for the blood test and one the next day to see the oncologist, but at least I can avoid the hanging around!
Manaon,
I couldn’t imagine cycling, still getting out of puff with walking relatively short distances. Good on you!
Snoogle
x
Hi Snoogle
Hope you’re not having too many Herceptin side effects & glad it’s better having the nurse come to your home.
My cold cap experience was much improved by taking Lorazepam beforehand. I can’t remember much about the chemo or 3 hours cold cap, apart from it being put on my head. I do remember puking - I think the nurse injected it through too fast, actually. Funnily, I keep repeating myself as I’ve forgotten what I said to my family that day and also don’t seem to recollect anything they told me - oops!
Now just waiting to come down off the steroid-induced feeding frenzy which is probably not helping my sluggish are!
xxx
Hi Ripley,
Only major side effect I am having at moment is ‘power surges’ due to enforced menopause from hormone treatment. I feel cold for the rest of the time. In the hot sunshine on Saturday I had goosebumps!
Still slugish and very tired, but guess it takes a while to get over the chemotherapy.
Have been introduced to facebook so that’s why I am not on here so much. Don’t mean to ignore people. The novelty will soon wear off.
Love to all,
Snoogle
x
Hi new to this site,just been told Ive secs in liver, bone, and lymph nodes, primary treated 10 years ago, with a mastectomy, chemo, and radiotherapy, followed by 5yrs on Tamoxifen, all this time Ive been fine, a true fitness freak, running marathons etc, diagnosed with Rheumatoid Arthritis 4yrs ago, another blow, but managed to deal with it most of the time.this year, noticed my health changing, Rheumatoid flaring up a lot, feeling very unwell, lots of chest infections etc, after many trips to GP, and Rheumatoligists, and concern over my raised Liver enzymes, I ended up in the Breast Clinic, last week, got the diagnosis today, Taxol is planned, a 4 week course then a follow up appt, also testing to see if Herceptin will be suitable, .Im stunned, sick, and want to cry, and cry, Im 65 in january, still have one teenage son at home, 4 grownup children as well, Im going through all the its not fair rubbish, and swing from feeling brave, to a cringing wimp, in a matter of seconds, do we all do this?I reacted badly to my Chemo last time, so am dreading the nausea again, Im not asking anything specific, just wanted to say hello, and feel a part of the Forum, Ive already read some very interesting , and encouraging posts, Tricia
Hi zizi
I am sorry to read of your recent diagnosis. As well as the support you will receive from the other users of the forum you may find it helpful to have a copy of the BCC secondary resources pack. The pack contains a personal record with clearly tabbed information about diagnosis and treatment options, key questions to ask and space for important details. If you would like a copy just follow this link:-
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/2
I hope you find this helpful.
Kind regards
Sam (BCC Facilitator)
Hi Tricia you asked ‘‘Im going through all the its not fair rubbish, and swing from feeling brave, to a cringing wimp, in a matter of seconds, do we all do this?’’ yes I think we do all do this…well I certainly did. I have bone mets, just wanted to say ‘‘Hello’’ to you. I’m so sorry you have to join us but you will find much support here, much information and our experiences of chemo and other treatments. Love Belinda…x
Hi Tricia,
welcome to the club none of us want to be in you will get lots of support from the wonderful women on here.
I was diagnosed with secs 5 years after primary mine are in liver and bones I was told last Oct it had spread to the omentum this is the one that has caused me the most problem I refer to it as ‘mental fil’ Ther is little or no information on this and I find that so frustrating.
I am 58 with 2 daughters both married and away from home but I still feel life is being stolen for too early from me, I too had those moments when I felt very sad, still do when there is a change in my condition.
The anti sickness drugs that go with chemo are alot improved over the last 5 years. I was on taxol for 18 months and was not sick once so try not to worry about that, ondancetron and domperidone were the ones that worked for me, just try not to get constipated!
Take care and look forward to ‘speaking’ soon.
Love Debsxxx
Hi Tricia,
So sorry you’ve had to join us, but I’m glad you’ve already found some of the posts helpful. You just cry and rant as much as you want - who wouldn’t, faced with what you are having to deal with?? It’s just cr@ppy. You can just come on here and not say anything at all, or say anything you want.
When do you start the Taxol, did you say? Really hope your fears aren’t realised and it’s more tolerable than before,
love Jacquie
Hi tricia
sorry too, you have had to join us - it takes time to sink in and i know how difficult this can be - i was diagnosed as having secondaries in bone , liver and lymph a year ago - has 18 weekly taxol that was ok - a bit tired towards the end but carried on working through - am also on zometa for bones and hercptain at momnet - its so tough on our children - my daughter is 25 and had just moved out - she has moved back in ( with boyfriend she is so scared - anyway just give yourself some time … and i am sure you will get a lot of support here…take care , jaynex
Hi Tricia, Like everyone is saying so sorry you have had to join us here but you will get a lot of help, support and information from the ladies on here. I was diagnosed in June 2008 with secs in Liver, Lungs and Bones. My original diagnosis was 10 years earlier and like yourself had no problems during that time apart from arthritis in knees and hips so we are very similar. I took Femera for 5 months but then had 12 weekly Taxol starting in Dec 08 and found it very doable. I had no sickness and having the treatment on a Monday I would find Thursday was the day I needed to rest and I did feel very tired towards the end of the course. I have now been taking Tamoxifen since March. Hope what you are reading on here helps. Love Lesley xx.
Hi
I’ve ‘met’ some of you before - I was diagnosed with liver mets two weeks ago following a dose of pnuemonia. I am 38 (39 on Tuesday) with two kids (aged 8 and 3). Just had my first Taxol which was okay. Felt a bit gripey two days later but doable even with the kids. Feeling a lot better today. Its good to read up on other people’s treatments and see how they are going. Still feels unreal but making it through each day. Thought I’d share this with you tho’ - I was a bit upset yesterday evening and had a little cry with hubbie, the radio was on and neither of us could believe our ears - ‘Staying Alive’ was playing - at least it made us laugh.
Kirsty xxx
Hi Kirsty, Sorry to hear you have had to join us but I am sure you will get lots of support and help from ladies here. What you said about ‘Stayin Alive’ made me smile though, my eldest son an active police firearms officer who I thought was ‘fit as a fiddle’ as they say was taken into hospital coronary unit 2 weeks ago and whilst laying there the music played on the hospital radio was ‘Who wants to live forever’. Thankfully he was able to smile about it.
Lesley xx
Hi All,
This seems as good a thread as any to introduce myself! I’m Claire, aged 40, married with two children (aged 7 & 8). I was diagnosed in July 2009 with secondary breast cancer. No warnings, no lumps or bumps until one day in July I turned a vivid shade of yellow and grew a breast lump almost overnight. The last few months have been an emotional and physical rollercoaster to say the least! Hope to join in more discussions now I’ve registered.
Love Claire xx
Hi Kirsty and Claire
so sorry you have had to join us here - but we all have had that news ourselves so you will get a lot of support from wonderful women on this site - I know I have - I have had liver ( and bone and lymph mets) for just over a year now and some days I still feel shocked! But other days are easier - few are completly easy!!! well, we are all in the business of ‘staying alive’!!! you will also find some humour here, as well as sharing advice and tips - give yourself plenty of time to adjust - it sometimes can be better to have treatment start … take care . jayne
I would like to welcome Kirsty and Claire you will get lots of support on the forum.
Hope everyone is o.k.
Love Debsxxx
hi all, sorry not been in touch, have been on holiday and then it was my birthday and wedding anniversary, so been doing lots of celebrating and still going!!!
hope everyone ok?
zizi, sorry to hear your news, i have been on herceptin fornearly 9 months and taxol for 3 months and so far so good with the only side affects being hair loss and hot sweats! goodluck wiyh it all.
had ct results, which looking good two big tumers have shrunk by half and the others are more cist like??? onc is happy so i’m happy.
he did mention stopping chemo soon which is a bit scary as i think i will be playing the waiting game as when it starts growing again but hey!!!
snoogle, i’ve been on face book for a while now and i worn you it is very addivtive, so good luck wiyh having a social life ha ha ha. xxx
gossie xxx
my name is fiona and i am 41. i have secondary breast cancer of the liver, also it is triple negative so doesn’t respond to hormone treatment.
i have had chemo and all is quiet in my body at the moment , i am having 2 month blood tests to see if there is any change.
i am having no other treatment until tumours return and who knows when that will be. so now i am just left to get on with things as normal but i have this massive weight to carry round with me. i live in portsmouth and there is no help groups for women with secondaries it is very frustrating.
but it sounds like we are all in the same boat.
fiona
Hi Fiona,
welcome to the forum I was in the same position when diagnosed with secs I did not know where to turn, this forum has been my life line so I am sure you will get lots of help.
Love Debsxxx