Hello All
Barbara- thats great, pleased for you…you must be so relieved. jaquie and Kay - keeping my fingers crossed for you.
Shall we go for a table at 11:30 ? Kay I think I agree its important to get in their before lunch time,
Still a bit shell shocked about weekly taxol - know you have done it Kay and Jacquie, but its such a bind, on the plus side had a lovely lunch out today.
love to all
Cathy
Hi All
Sorry to hear your news Cathy but you are a fighter and once you start your treatment hopefully you will feel that you are doing something to this b… thing.
Hope your results are good Kay and Jacquie.
Beli x
Hi Dawn
Sorry didn’t include you haven’t been on thread for a while but saw on another thread that your Ct scan was good news brilliant news hope you are keeping well and your daughter is enjoying school.
Beli x
Hi All
Thanks Beli for your msg. Sorry to you all that not really been posting much, but I have taken a step backwards from the forums for a while, after Dee and a few other things I decided that I needed some space really. I have also been in a really black hole the last month up to my latest ct scan, as my left boob was in pain, and I was getting completely paranoid about it, thinking it is something sinister, therefore my herceptin cant be working and wot would that mean is happening to my liver.
As Beli said, my ct scan came back with no change (am hoping when my onc gets back from his hol and looks it over, he will say there was another shrinkage no matter how small), but am happy with the results as means herceptin is still working for me at the moment. I am waiting for a mammo and ultrasound appointment to check out my left boob, but am a little more relaxed about it than I was. But need to get this part over and done with too.
I just find it hard coping with the day to day living of having cancer, and the what ifs and wondering if I will see Sophie and Jack grow up. I sit there some days watching them play with toys, with tears in my eyes, wondering how they will cope when I am gone, if they are crying for their mummy and I am not there. People think I am coping admirably, say how well i look etc, but they know nothing of the inner turmoil I am in.
But it was fab to see Sophie start BIG school last week, as I didnt think I would see that last year, so that is good and she LOVED it, although not too big a change for her, as her nursery is at the school, so she is really only changing classrooms. She has lunch there this week and then monday week starts FULL TIME. OMG.
I am also really sorry but not gonna be able to make the liver birds meet this time around, as you may have seen my posting on the cinderalla meet thread, but Sophie has at last got some speech therapy sessions, starting on the 25th at 12.30 and I am taking her. So pleased they are now actually going to do something and they are going to focus on her pronunciation and monitor the stammer (which at present seems to have really calmed down). So fingers crossed we get this sorted early.
Anyway, sorry but I have really rambled here I know. And not having posted much recently a little bit of a cheek.
Cathy I hope u are doing OK. Was lovely to catch up wiv you the other night on bcc chat and I hope that the chemo works and your liver settles back down.
Everyone else, hope u are all doing OK. Shame the weather is so bad though.
Take care and lots of love
Dawn
xxxx
Hi Dawn,
isn’t that the hardest part of having to deal with this?Wondering if you will be here to see your kids reach another milestone and how they will cope when you are gone? I know that’s the hardest thing for me. My two are 4 and 3 yrs old and it seems they learn something new every day. I want to be here to see them grow up. I have come to terms with being ill and take every day as it comes but seeing how hard it is on my family (Dad, sisters and brother) takes it’s toll. They say they are amazed at how brave I am. That’s only because they don’t see the tears. I can’t tell them how upset I become at times, especially at night when the kids are in bed. Wanted to share one more thing, I watched The Bucket list yesterday and when I thought about what would be on my list of things I wanted to do before I die I couldn’t think of one thing. I hope all of you on these forums and every lady who has BC has that same feeling, no matter how long (and I hope really long for all of us) or short our time might be
love Maroke
HI, I don’t think I have contributed to this thread before, but have been reading it.
I am on 3rd Epi for Secondarys in Pleura, bones and liver, with a tumour on my aorta. I was given statistics which did not give me much hope of living past next summer. I now know that people live longer than this and I aim to too!!
I have nothing I want to DO except be here. I think I will do things as I think of them and not leave them for later, but I do not have a list. Glad to be here, is the main thing.
gill
H All
The Bucket list (!) -maroke you are a toughie watching this- i dont think I could!!
I feel exactly the same way that you do - can’t think of anything like that I must do - all my must dos are things like sort out pensions, declutter house, write things down for my husband…it would not make for a very good movie, pan to me calling insurance company - or fade in to me discussing things with my HR department. All I want to do is enjoy things with my husband and son and be as normal as possible…
Every time someone calls me brave I feel my heart sink,cos as you say they don’t see the tears and some people seem to lack the imagination to realise that they are there.
loe to all
cathy
Hi All,
Got my scan result today. The good news is that my liver tumour is exactly the same size as last time (April) and that means the herceptin and tamoxifen are working, as all the chemo will have been out of my system since then. Phew!
The oncologist suggested considering radio frequency ablation (RFA) as there’s just one tumour and no other spread. He’s never suggested it before, only answered my questions and said there are no conclusive studies.
The only downer is that when I told him about my recurring back pain he decided to send me for an MRI scan ‘just to check’, and if there’s any spread there, I probably won’t be eligible for RFA.
So, one step forward and one step back.
I have a niggling suspicion that he only mentioned RFA to cheer me up cos I sat and cried last time I saw him! On the other hand, he seemed genuinely pleased with my scan result.
I’ve accepted his offer to see the team psychiatrist! as I’ve been so weepy and down. I’m just fed up of not knowing which way to turn, for counselling, support, prozac or whatever. At least if I see him for just a one-off consultation it might help me sort out what it is I need.
Maroke and cathy - what is the bucket list?? never heard of it…
Love to everyone else living with this cr*p, let’s hope the sunshine fairy sweeps by soon and we all escape from the doldrums.
Jacquie xx
PS.
I’ve read back through and I think it’s Barbara, Kay, Cathy and me for the 25th. Can anyone else come? Shall we throw it open to anyone with secondaries, as people are having such difficulty with dates? what do you think?
Jacquie
First - good news about your scan results - thats great. I very much doubt that your onc mentioned Rfa just to cheer your up, these people don’t do anything just to be nice they are so experienced dealing with ‘people like us’ that they don’t have to. If (and I am not suggesting you do) you have bone mets that doesn’t disqualify you from RFA - they have to be under control…that can be done.,My bone mets are apparently getting better…better than alternative but liver not great.
I am happy to meet anyone from this board - the more the merrier.
love
cathy
PS - the bucket list is jack nicholson and morgan freeman in a cancer ward planning lots of fun things to do before they die, apparently very hollywood, totallly implausible film…We went to see Get Smart after my scan news, much more fun, I enjoyed it alot.
Hi Jacquie,
The Bucket list is about 2 patients who have been told they have 6 months to live. One is rich and he offers the other one to make a list with what he always wanted to do and never could. Then they set off to complete the list. It is a hollywood film, but I did enjoy it. There are some sad moments but had some laughs too. And although the film was a bit implausible it got me thinking about what would be on my list. And that is…nothing. Apart from being where I am now for as long as I can I have done everything I wanted to do. And that idea alone gave me some peace. If I have to watch another thousand hollywood films to get that same feeling thenI will.
love Maroke
Hi Maroke
you put that beautifully -i feel the same way in a sense that all the things i want to do are very simple about organising things - not going to see pyramids and things like that - I hope i didn’t annoy you by being flippant about films- didn’t mean it to come across like that…
love
cathy
Firstly really pleased to hear your results, Jacquie, and will keep my fingers crossed that the back pain is just back pain nothing more sinister. Like Cathy I don’t think he would have mentioned the RFA just to cheer you up - are you going to follow up the suggestion?
Have never heard of the Bucket List but think you described your feelings, Maroke, about a list so well. I actually feel much the same way - there are things I would quite like to do and probably enjoy, but the most important thing for me is time with my family. I like my life as it is (or as it was before cancer trampled all over it) and that is what I want more of.
Kay x
Hi Cathy,
you didn’t annoy me at all, just wanted to make clear why I liked the film, I have found a lot of comfort in these forums, hope as well.And I think any little thing that can make us feel a little better or more cheerful is important, be it a film, a movie or just a beautiful sunset. I also think that all of you are amazing. There are no forums like this in Belgium where I live. There are some but they don’t give half the information I have found here. I’ve passed the addy on to lots of women in the clinic where I’m being treated (BC with liver secondaries, now also in bones and lungs). It’s kinda hard to keep going at times. I had a mastectomy first, then they put me on FEC, which worked, was ok for 6 months, then they tried Taxotere, which made me very poorly but didn’t work. Next one was Xeloda tablets, they didn’t work either. Now they are going to start Navelbine on Thursday. The onc said it only has a 15% chance of working, so I felt really bad. Especially because she also said it was the last one they were going to try. A friend in the UK told me to check this site, I did and posted something and I got a reply from Dippykate. She told me not to accept that and insist they keep on trying. Well, she put the fight back in me and I can’t tell how grateful I am to her. I only hope that one day I can do the same for somebody else.
Jacquie, if your onc seemed pleased then he probably was. I can tell by looking at my onc if her news is gonna be good or bad. I wouldn’t worry too much if I were you, I know, easier said than done
love Maroke
Hi Maroke
You have really been through the mill with so many treatments in such a short time. Its a shame that you dont have these forums in belgium., maybe they really appeal to english american people as they like to write their thoughts? I have spent some time in brussels - even the weekend before i was diagnosed with secondaries, we have friends that live there and my prents lived in brussels for years…really like it,
I know what you mean about Kate - i always read her posts, i think she is amazingly helpful to all of us, and because of her medical background (and personality) she can give us inspiration to be assertive about our treatments.
yesterday I started Avastin plus taxol, they put me in a little side room which was a bit scary - i think this was in case I reacted to either of them as both new drugs, nothing happened… I hope that you get on OK with Navelbine…15% arggh, I dont think its reasonable that they stop at that. I think that treatment should be stopped when you can’t take it anymore or your liver gives up,if that hasn’t happened they should go on if you want it.
Feeling OK at moment - weekly taxol not yet as punishing as three week taxotere. I met with hospice nurse again yesterday, actually find it quite helpful talking to her and its nice to have a resource outside of GP and hospital…
take care all
Cathy
Hi all,
think I have been very lucky in the way my body reacts to the chemo. Didn’t have any side effects with FEC, apart from losing my hair (which I thought was worse than losing my breast). Then the taxotere, that was the worst, had bad muscle pains, my nails turned green and dropped off (that is still going on) and my hair fell out again! The Xeloda was a breeze, no side effects at all. So next Thursday I start with Navelbine. When my onc said this one had only 15% chance of working and it would be the last one, so did I want to try it I told her even if it had only 1% chance I would do it. It’s a good thing Kate told me I can insist they keep on trying. I will keep on trying until I drop, have everything to fight for. My daughter is 4 yrs old, my boy is 3. They need their Mum.
Cathy I’m keeping my fingers crossed for you, I do hope the Avstin and Taxol work for you and that the side effects aren’t too bad. Please let me know how you get on
Love Maroke
ps. my name is Peggy,but couldn’t register with that
Maroke is my daughter, Bakary is my son
Hi to all
follow this thread and I think I have posted a couple of times.
I started taxol with avastin in Feb this year my liver was in a really bad way as I have lots of clusters it was described by onc as looking like blue cheese! After 6 tax and 4 avastin 50% shrinkage 6 more tax and 4 avastin 10% reduction. I have avastin and pamidronate every 3 weeks and still doing reasonably well. Really enjoying a chemo break but know I will have to go back on it at some point. So fingers crossed you get good shrinkage, it never fails to amaze me how much the liver can take.
Love Debsxxx
Hi Girls,
Good to hear a bit more about you Maroke (Peggy!), but it sounds like you’ve had a pretty rough ride.
Thanks Cathy and Kay for your encouraging words.
I have got my MRI scan tomorrow!! Either someone messed up the booking system and they had lots of gaps, or the NHS is more effecient than we thought! (Which do you think?) Got to go on my own as such short notice, but it will be fairly quick. The problem is I don’t know when I’ll get the results, which adds to the anxiety.
I’m going to Sopwell House Hotel for a girly weeekend for my friend’s 40th, so there should be lots of giggles and lounging around reading magazines. I just phoned to see if i could get a back massage but no, as expected, they want a doctor’s letter for anything like that. What I really want is some acrylic nails to help my own nails have a chance to grow, so will save my money for that.
Well I’d better get off for school pick-up
Hope everyone’s doing okay
love Jacquie
Hi All
Maroke You do seem to have been through the mill with different drugs. I know how you feel when told no more treatment I have been told previously that if Xeloda doesn’t work for me there is nothing else, mentioned today at the hospital what were my options and given different advice such as maybe trials so yo could always suggest that to your Onc.
Jacquie Good news re your results if you need anybody to go with you to the hospital I will always accompany you. Having said that at the moment I’m without a car but hopefully not for much longer.
Cathy You poor thing you are also going through a tough time are you getting your treatment privately as I mentioned Avastin to my registrar and they said not enough evidence to support giving to bc patients. I really feel I’m up against a brick wall.
I saw you are all hoping to meet again that would be great,I can’t give a definite yes or no as I am in alot of pain with my back and hip not sure if it bone mets so waiting for a bone scan and ct scan, also as mentioned before I don’t have transport at the moment.
All the best Beli x
Hey all
jacquie - glad you have your MRI tomorrow that is quick, just wish they would then give you the results!
beli - yes I am treated privately at the moment, but insurance company will not be enjoying my association with them
love to all
cathy