Kay, really good news enjoy your celebrations. This could be the forwar for more of us with liver mets so I for one take my wig of to you for being a pioneer.
I am going for treatment tomorrow but as I have felt sh*t for the past 2 days will not be surprised if bloods are not up to it.
Hope other waiting for results get good ones.
Love to all.
Love Debsxxx
Really pleased to hear yor news Kay, you go and celebrate!Saw oncologist on tuesday so considering options. at the moment it looks like more chemo, Gemcitibine and Carboplatin but I have a scan booked for a couple of weeks time, need to check if I can fly as need to take son over to Belfast for university.
Debs it’s good to hear that you had time with your daughter and a meal out, hopefully the Vinorelbine is doing it’s stuff.
Ripley , how are you, how is the Epi? That’s another option that has been mentioned to me.
Hope everyone has a good Bank Holiday weekend
Love Kathryn
Good luck to you all with with liver secondaries, luckily which I don’t have, but I do share some of the chemos. Debs, vinorelbine which I had last year. Also carboplatin/gemcitabine which I am on my forth cycle of and finding quite hard, it seems to be very hard on the bloods, had to had a blood transfusion a couple of weeks ago and onc thinks may need more in the future, maybe every 6 to 8 weeks. But the great thing it is working and the lump in my neck has gone. So that is most encouraging.
Kay, so glad that your scan seems encouraging, and long may it hold things
I also think it is most important to have goals to aim for. Whether it is a weekend away or my youngest son’s graduation, which is still 2 years away, and my big one.
Also last october I was given 6-12 months to live and I am very much alive and kicking. I hope to celebrate by doing a midnight walk for my local hospice in a couple of weeks, not quite sure whether I will be up to it on the day, will give myself a steriod boost to help!
With love Marmite x
Hope everybody had a good Bank Holiday weekend.
Kay, congratulations on your results. That’s magnificent news. Long may it continue.
I am on day 5 of this round of EC. My scan didn’t show any significant reduction but it was stable. I know I should be thankful for that, but it seems to me that each regime yields less of a response and my body seems to develop resistance quite quickly, so have to admit that I am disappointed and scared that I’ll run out of options sooner than I’d hoped. Having a cough that doesn’t seem to go away is like having a permanent benchmark that I can’t ignore.
Thankfully, I have managed to unstrap the fridge from my back after 3 days of a steroid and Neulasta-induced feeding frenzy. Kathryn, good luck with your scans. I don’t find this regime as harsh as the Taxotere & Carboplatin (so far), but I do feel really lethargic on it, certainly for the first 4 days or so. Today I feel more human and definitely need to do something about the stuff that it lurking on my head - hair, I believe it’s called. What with cold cap instructions not to wash it regularly, plus my total lack of energy - well, it’s not the best look. It has morphed into a different style daily from Julius Caesar to toddler hair with weird curls at the back but straight on top, to the bloke from the Prodigy. Let’s see what a wash will do to it today…
Anyway, I hope everybody’s as well as can be. Take care
xxx
Hi, Just a quick message to say hello. I will try and read the threads that I have missed and respond to any questions/comments later. I have just got back from 2 1/2 weeks away, coming home twice once for onc appt and the other time for the herceptin. A few side effects from the letrozole/femara and zoladex, will mention them later. However, the news I wanted to share was that when I saw my onc a couple of weeks ago he told me that my tumour markers had gone down to 38, they were around the 240 region! I have just got to hope that the herceptin, femara and zoladex stop the tumours from growing for as long as they can! I had better go and unpack now.
Best wishes to you all.
Snoogle
x
Hi All
Well back from my holiday in Turkey, and starting to catch up with things. Just need schools back tomorrow to get some proper free time to do this properly. Sophie starting Year 1 and Jack starting preschool.
Kay, from my quick read I take it that things were very successful with your SIRT procedure. Which is fantastic news and hope for us all as well.
Everyone else I hope that you are all doing good. Me, well am ok, plodding along and getting on with kids and stuff. Holiday was fantastic and didnt want to come home, although had my herceptin yesterday, as our holiday was planned straight after my last one.
Will try to see what has been going on and post again very soon.
Take care all
Love
Dawn
xx
Oh c**p,
Just wrote a long message and it disappeared into thin air! Grump!
Better start again.
Dahlia, what’s an oophorectomy? am I being dumb?
Jacquie, short answer is that I don’t know why letrozole instead of tamoxifen. ONc’s treatment decisions have yielded the best outcome so far so I trust his judgement.
KerryRose, I am so pleased that you had such a wonderful day.
Nicky, Yes it was a bl**dy big needle!!! I am getting menopausal side effects, but nowhere near as bad as side effects of chemo. I am getting loads of hot sweats but as I am taking evening primrose oil supplement can only presume they would be much worse without.
Ripley. I was very worried about stopping chemo too soon as I wanted to get the best outcome from it. However, my most recent blood tests showed a drop in tumour marker and my liver function is improved. So on balance it was probably the best decision, as looking back I don’t know how my body could have coped with much more chemo in one go. Although I know I would have got through it somehow if I had to. My hair is also growing back and I have been free of wigs/headscarves for about two weeks. The kids are ok with my very short hair, a huge step from when it started falling out. I guess because it is coming back that they can cope with it better. I stopped wearing the headscarf when a complete stranger asked me if I had cancer and then burst into tears and become incredibly emotional in front of one of my children. ok she may have had a drink or two, but still it was highly inappropriate. I would rather people think that I just have a severe haircut than my children have to deal with that! I hope that you are feeling better now. Sounds like you have really be through it.
Gossie, how goes it all? Hope you are feeling better too!
Well, I know that I have had some positive news, but am all to aware how quickly that can change. I just hope that the herceptin, letrozole and zoladex help stop the tumours from growing back for as long as possible. So for now I will make the most of the time I have with my husband and children, spend as much time having fun with them as I can. I will try not to obsess about whether or not this will be my last Christmas and just do my best to enjoy it.
By the way, who was the lady with the bonsai company and is it called ‘Little Oak Bonsai’?
Best wishes and love to all,
Snoogle
x
hello, hope everyone is ok
kay, great news you must be pleased, really happy for ypu.
debs in corn, i don’t know how you had the strength to play your music, i can’t even listen to songs on the radio without listning to the words and thinking bout it! i’m glad your family like it. my fingers are so very crossed for you to feel upto seeing your daughter and new grandchild, i’m sure you will find a way. xxx
snoogle, great news happy for you too! glad you had a nice holiday.
someone said evening primrose was good for hot sweats, PLEASE if there is anything else that works! i had sweats whilst on fec, but now on tax and i feel they are worse and starting to make me feel sick, alot worse at night my husband is in the spare room!!!
my last bloods had improved which was a bit of a surprise, back again tommorrow for more chemo so we shall see what the bloods are then.
i hope everyone is ok and keeping chins up! take care. xxx
snoogle
No you are certainly not being dumb!
An oophorectomy is removal of the ovaries. A BSO (bilateral salpingo oophorectomy) is removal of both ovaries and both tubes. There - another bit of your education complete!
Best wishes
D
Hello all
Just checking in to see how everyone is doing. Ripley - glad to hear that you are keeping your spirits up despite everything. And Kay - great news from the SIRT!
Mummy 33 - the goals thing is tricky. I’m not a great believer in the ‘bucket list’ idea but I increasingly feel the need to take control of my life on the principle that I can’t decide how long I live but in as far as possible I will decide how well. my secondaries are liver and lungs which, though they will do for me in the end, don’t limit what I can do at present. My particular fancy has been to take up cycling and to tackle a series of long distance routes - France North to south was the first and have a few others planned. Who knows if I’ll be around to complete them but most of the pleasure is in the planning… When I am cycling there is such pleasure in setting off, sometimes on my own, sometimes with friends, with the uncomplicated objective of covering a certain number of miles. It sounds very athletic but in fact as long as you cycle slowly it isn’t too challenging.
THanks Dahlia.
My onc had mentioned the possibility of considering surgery if, if I remember correctly, either I didn’t get on with the letrozole/zoladex or it didn’t work. I guess oophorectomy was what he was eluding to. He doesn’t seem too very keen on me undergoing surgery so we’ll have to wait and see.
Take care everyone and have a good weekend.
Snoogle
x
I found red clover and sage worked for my hot hot flushes check with onc though if you are on chemo.
Was able to have my chemo today my bloods have improved so even though I know I wont be awake for long at least I have some weed killer inside me, killing my uggers.
Have a good weekend everyone.
Love Debsxxx
Glad to hear that you could have your chemo, Debs - still keeping my fingers crossed for you that it is doing its job well.
Good to hear from you Manon - was wondering how things were going for you. The cycling sounds great - I’m hoping that now my feet are (just about) recovered from xeloda and my energy is improving I can do more walking. We started doing the North Downs Way before my secondary dx and are only about 30 miles from Dover (having walked from Farnham in Surrey). Would be great to finish it. Would also really like to walk the Coast to Coast but think that might be too ambitious!
Snoogle - do you mean DawnHC? In which case the nursery is Herons Bonsai in Lingfield, Surrey. Really good news about your tumour markers.
Ripley - know what you mean about “stable”. Think in a way I feel a bit the same as I am really grateful for my results and very relieved but I can’t celebrate as others might expect me too as I just feel that in 6 months time I may well be back where I was. I am hoping the SIRT will actually hold things for much longer but also because there is so little information about it, scared that that is really a false hope. And like you, am scared that if it doesn’t hold things, I am running out of options. Then I feel cross with myself cos actually I am so lucky to have been offered SIRT and feel I should just be thankful I have (when so many haven’t) and that it appears to have blasted the uggers. Sorry, Ripley - that was more about me than you and it wasn’t meant to be!
Kathryn - good luck with the scans. Fingers crossed for you too. Have you managed to get your son to Belfast ok or is that later this month?
Dawn - good to see you posting and glad to hear you had a good holiday. Can’t believe Jack is off to preschool!
And hope everyone else is doing ok and managing to enjoy something this weekend.
Love to all Kay xx
Hi Kay
i know what you mean about being cautious in celebrating, after the Taxol and Avastin when my oncologist said things were stable i’m sure the so and sos heard and thought we’ll show him! I start Gem/carb hopefully this week, my breathing is very difficult, I’m sooo jealous fo your walking and Manon’s cycling ! I spoke to the oncologist on Thursday evening and he was ordering the drugs and clearing it with BUPA. I also think the fluid will need draining again. It’s all so tiring, I find even going upstairs difficult and I’m being really sick. We are supposed to move my son next weekend but i think my husband may have to go on his own if I’m till feeling like this, i will be really disappointed. Anyway will hopefully get a call in the morning
Love to all
kathryn
Thanks Kay. It’s a completely different place that we drove passed.
Wanted to say hope everyone has had a good weekend.
Snoogle
x
Hello you wonderful women, (I just wrote ‘winderful women’ - those side effects can be bad!)
It’s so lovely to catch up with you all. I put off coming on here because I know I’ll be here for hours catching up…
First Kay, that’s brilliant news about your results. I, too, often can’t really enjoy the news at first, when everyone’s expecting me to be happy. But then the happier feelings sort of creep up on you over the days and weeks, I find. Will you have another scan in a few months?
Ripley I am really sorry you’re having to go through this, but your description of your hairstyle really made me laugh. I think you’re v brave using the cold cap, I hate the thought of having my brain freezed!
Manon, it’s nice to hear you sounding so well.
Debs H - hi.
Rach (Budleigh) hope you’re much better now after your virus knocked you for six, and all goes smoothly from now on.
Kerryrose - get back here and tell us about your honeymoon!
Snoogle, that’s great news about your tumour markers going down so dramatically. On the subject of oophorectomy, it came up with my onc recently and he said they’d rather not do it if poss as you can get such a severe menopausal reaction.
Dawn, Turkey sounds lovely. We had a great holiday there several years ago (Bodrum). Found the people really frinedly and child-friendly. Can’t believe how fast your two are growing up!!
Gossie, your night sweats sound awful and distressing, and not really v romantic with your OH in the spare room!
Debs (in Cornwall), I am so sorry to hear you’re finding it so difficult at the moment, it must be especially hard not being able to get about. At least there’s the internet so the shopping doesn’t have to stop… It must have been really tough but oh so precious, to listen to your music with your daughter. It will be so much more meaningful to her now when the time comes - she will have a memory of being close to you to associate with the music. I’m glad you’re feeling stronger than a couple of weeks ago. Go girl, you ‘have’ to make it onto that plane, and into next year for your beautiful grandchild. As someone else said - you’ve defied the medics before…! We are all rooting for you hun.
Kathryn, I’m sorry to hear you’re feeling so unwell too, and that your onc thinks things may be on the move again. It will be a real ugger if you can’t get to Belfast - it’s such a significant moment in their and your lives.And it helps so much if you can picture where they are living and where they are spending their days, when they move away.
My news is good - I had another follow-up CT scan at UCLH last week, and they still can’t see anything growing in my liver since the RFA. My MUGA scan wasn’t quite so good, as my heart output is right on the cut-off point of 50%. Thay said as I’m not showing any symptoms of heart failure they’ll let me continue with the herceptin, but it’s always a worry.
As far as goals are concerned, Mummy 33, I think you just have to go at the pace that suits you. This time last year I was unable to think more than about 3-4 months in advance, so had to just plan outings to the cinema, etc. This year I feel a lot more hopeful, so I can look ahead a bit more. I have had a lot of internal tussle about my job and whether it’s worth investing time and effort into developing my knowledge. If I don’t keep developing then the job just becomes meaningless (‘treading water until I die’) but then I panic when i think (as I do just now) that I have to spend the next 4 weeks writing an assignment that I know will be really difficult for me. I’ve got cancer! Surely I have the best excuse in the world to pull out! What if I take a major downhill turn and I’ve spent the last month struggling with the computer and not having any fun?
It really is a difficult quandary isn’t it, in so many areas.
Well, I must go - it’s ‘Waking the Dead’ in a mo.
Huge love to you all,and hope I haven’t missed anyone out,
Jacquie x
Hello
Saw my oncologist again on Friday, after a blood test the day before. My tumour markers are down again, to 26. I appreciate that I am really lucky. It’s almost six months since the double diagnosis and at the time worst case scenario was that I was unlikely to be here now. Sometimes I can’t believe that I have responded so well. Chemo was hell, but somehow I managed to avoid hospitalisation, despite one of my daughter’s classmates having suspected swine flu! Hopefully the herceptin and letrozole will stop the tumours from growing again too soon!
Love to all,
Snoogle
x
What good news, Jacquie and Snoogle - though there is nearly always a “but” isn’t there Jacquie? Hope the Muga scan is a bit of a blip and the next one doesn’t show more deterioration. It is a worry though isn’t it, even when everything appears to be going well.
Sorry to hear things are so difficult, Kathryn - am really hoping that you managed to have the gem/carb this week and that it has helped (with not too many side effects). Did you get your son to uni this weekend? It is so important somehow to be part of these things and so I am sure you will have been very disappointed if you haven’t made it.
I’m feeling a bit brighter the last few weeks after a bit of a crisis earlier in the week. Ended up going to the GP (and getting sleeping tablets) and having a long talk to my MacMillan nurse which has resulted in a referral to one of the counsellors at the palliative care centre. We decided a lot of my current problems related to feelings of guilt at not being able to do what I used to do and having to depend on others - at work and at home. And also getting cross with myself for feeling like that when actually I am physicaly doing very well - and so many others are not so fortunate.
I’m off on an Odyssey course next Sunday which should help and we’ve booked a week on Cyprus in October. So got lots to look forward to.
Hope the weekend is going ok for others.
Kay xx
Kay,
Hope you enjoy (if that’s the right word?) the Odyssey course and have a fab time in Cyprus.
I must really look into going onto an Odyssey course next year, if they are still running then!
Take care,
Snoogle
x
Kay - which area are you booked into for Odyssey? I loved my Welsh Odyssey in May and would go again tomorrow. And the next day and the next day and the …
Dead Jealous, Have a GREAT time …
Jenny x