Well cant help too much. My onc does NOT use tumour markers at all, I have no idea wot mine are, never have, nor how they work. He does not believe in them, says that with spread from BC, they are unreliable.
As for grades and sizes etc, I have again, never been told any of these, nor sizes of tumours in my liver. But I responded really well to chemo and herceptin so far (long may it continue) and they have all shrunk considerably.
My onc, again, does not believe in giving prognosis, says that no-one can say can ansa that, and depends on circumstances, reaction to treatment etc etc. So as you can see, my onc doesnt believe in telling me too much although I ask him all sorts. But he suppose to be very good, and I do trust him - well I have to.
Anyway, that was probably not much help at all. Sorry.
Take care
Love
Dawn
x
PS. I got a glass of wine too - had shit day with my 4 year old … at my wits end wiv her - any advice from anyone welcome.
This prognosis thing is really difficult isn’t it - as someone said in a different thread, the oncs are damned if they do and damned if they don’t give you a prognosis or get it wrong.
I didn’t believe them in sept 06 when was told 3 months!!! Now my cancer is so widespread and I’ve had so many chemos I can’t believe how well I look (apart from being bald) and how well I feel and yet am now on final chemo option. However,my physical strength is very poor but I’ve got so used to it now it all seems normal!!! Then I look at other women in their 40s and realise that I live a far from normal life!!!
I can’t believe that tomorrow will be my 9th weekly taxol so will be half way through although have such a bad chest infection not sure I will get it. Want to miss the one on 30th as half term and will be holidaying with family so don’t want to miss tomorrows.
I have no idea what size the one in my lymph system in my liver that blocked my common bile duct this july is. Usually I always want to know. I know the other one in my liver is about 3cm and has changed from 1 -3cm in 2 years according to if on chemo or not. I still seem to get liver pain especially when tired. Do other people get liver pain? Do you find it makes any difference what you eat?
Last weeks blood tests were good - everything but my albumin level was OK so liver function is now normal so don’t understand why I get this pain. I have this feeling that the secondary must be quite big as I do have a slightly swollen liver.
My onc doesn’t believe in tumour markers either so we look at all my blood results.
Not sure what help my post is - think I just wanted a chance to mull it over with others. Liver secondaries seem to vary so much in what size they are and their effects on the body. Still trying to get my head round my liver secondaries but I suppose they were only found in July 08 whilst my lung ones have been there since sept 06 and have got used to them and the problems they cause me
Think I’d better stop wittering on now
Hope you are all not feeling too bad. Wine sounds lovely but finding on this chemo, it just doesn’t taste right.
Kate
dawn - how are things with your daughter - is she giving you a hard time at the moment maybe becuase she is super pumped up from school and tired at the same time? I think its quite a big shock to them when they go to reception and girsl just love it as they are so social…but then I don’t know much about raising ‘typical’ children and i only have a boy!
jayne - my onc does tumr markers - mine are at 68 now (last look) and have come down from god knows where, I suspect from about where yours are, I think they don’t mean that much in themselves as for a good percentage of women they are useless as their cancer does not give out the needed protien, but for me they are useful as a general guide whether treatment is working or not and what direction thing gos in. Mind you - you get ideas about them - as some people can have very high tumor markers and a low cancer burden and others can have low markers and a high burdenm so they are only a guide. as for asking about number of tumors - well I didn’t know and now I know, and I am not sure it was a great idea!
kate - hi, I do get liver pain, actually more shoulder pain if I get very tired,I don’t think its influenced by food, or even drink, although I haven’t pushed that too much - 2 full glasses of champagne is a complete blowout for me. I did have really bad liver pain between 2 and 3 taxol and 3 and 4, but this seems to be gone now. The concensus was tha this probably was a flare up due to the chemo. My liver function is a litle wonky in places, but is not deteriorating and biliburin and albumin are good…so as you say I am not sure to what purpose,I think it sounds like taxol is helping you and I think it may be helping me, I would like a few more of the LFTs to come back into normal range, but they don’t seem the least bit concerned about it,
beli - hope you are starting to feel better and injections are working, i am now on the gsf (?) blood boosting injections, next one at 12, thinking of doing it at my desk (to give some exciting gossip - crazy acccountant at desk ) but probably not worth the gossip or exposing pudgy tummy to colleagues…
Hi all
have just written a respones - thanking you all and it vanished when I tried to post it - now in a real hurry to get out so sorry for v short reply - all comments help me understand how different onc approach tumours and markers - so its good for me to know that its not just mine ! really helped - thank you
Good luck with your injection at 12 Cathy…and Dawn could be that the buzz and social pressure at school means she is letting rip when relaxed and at home ? not much help to you but hope she settles down - every stage passes! thanks again, sorry about short post , Jayne
Hi
My tumour markers have shot up , I find that they are a useful indicator of what is going on, but obviously scans provide the detail.
Cathy are you having the GSF injections because your blood count is down or as a preventative measure? I am just wondering if I need to flag this up with my oncologist .
Best Wishes to all
Kathryn
Blood counts down, they said on tuesday borderline so next week would be too low if I went away without them…then I have the week break so should be ok for start of next cycle,expect to be on them on and off this odly I don’t really mind, I suppose its the least of my problems at the moment (!)
Cathy
Hope your blood count gets sorted, had Taxol and Avastin today and feel ok, tired but think that is largely emotional. Did the cold cap which was ok so fingers crossed, have a good weekend
Love Kathryn
Glad to hear that the Taxol and Avastin (and cold cap) went reasonably ok, Kathryn. Hopefully a good sign that you are going to tolerate it ok.
ALso hope you get your blood counts sorted, Cathy - the GSF injections should do the trick I would have thought. Loved the idea of you injecting yourself at your desk though! Definitely would have given everyone something to talk about!
Think Jayne is probably right about Sophie, Dawn - if she is having to fit in with all the new school routines etc, then she is likely to need to let off steam a bit when she is at home with you. She knows you’ll love her whatever. It’s also coming upto half term and all the children are getting really tired etc. Hopefully half term will help but it must be hard on you though.
Hope you all have something good planned for the weekend.
Hi All
I am coping reasonable well with the injections have inlisted the help of one of my daughters shes quite happy to stab me and I find it doesn’t hurt as much.
Sorry to hear your now having injections Cathy its not fun.
Kathryn glad to hear you feel ok after your first treatment and the cold cap I hope it does the trick.
Kate I don’t seem to get liver pain but I know a few do I hope you get your week off and enjoy half-term.
Sorry to hear Dawn your little angel is causing you problems they can be real tinkers sorry no words of advice, mine still cause me headaches and they are 19 and 23.
Sorry if I missed anyone out I haven’t been keeping track recently as still getting pains in my lungs and side, I’m due at the hospital on Wednesday so can have a chat re blood clots and results of my bonce scan.
I’d welcome a bit of advice. I’ve written to you before and had a lot of supportive comments and advice. It’s my Mum who has secondaries in the liver. On her diagnosis, just over a year ago she had a bone scan and an MRI scan, which showed the secondary to liver and lymph nodes in the chest. She had 6xFEC and then, nearly 9 months after initial diagnosis, received a letter from the onc saying that they had “decided” that she was borderline hormone receptor positive (she had been told she was negative) and that they were prescribing her Tamoxifen.
Since then, she had a mammogram 2 weeks ago (clear) and no other monitoring, treatment whatsoever! She has an appointment with her onc next week and because she and my Dad always go together, we are only told what was said afterwards. My parents are elderly and I know that they don’t do any kind of research into BC or its treatments but just take on board everything the onc says - or doesn’t.
My sister & I are wondering whether she is being ignored because she is elderly and whether there would be any benefit in us sending the onc a letter in advance of the appointment, subtly worded, to fire a warning shot across the bows so to speak, that there are members of Mum’s family who aren’t as ignorant of what’s what as she and my Dad are. They describe him as being competent but distant and rather arrogant (he is very eminent in his field apparently). Do you think we might jeopardise things rather than helping things along? There’s no question of us being allowed to go to the appointment.
Apologies for butting in - I think a caring family letter of support for your mum would be a good thing. Let him know you are there. why not one of you go with your mum and dad, if they will let you?
gill
To Psyche
I would try to send another family member with your parents as I know whenever I’m in hospital I notice although the oncs try to explaain everything to those of mature years, they often don’t take it in and get confused about what was said. Otherwise, I would write a letter to the onc and maybe get your parents to write giving permission for him to contact a family member so he can fill you in with what is happening.
There are a lot of people who don’t get monitoring for long periods of time with seecondaries so it’s not just confined to the elderly - it depends on how your consultant works and how fast your cancer is spreading. Cancer tends to spread with less speed in the more aged so as a lot of women on this thread fit the younger spectrum with very active disease that is why we appear to be getting more scans, tests etc.
Good luck but definayely try to get permission from your parents so the onc can talk to you.
Beli - really hope the appointment goes OK ttoday and I hope they have something positive to tell you about the blood clots. That must be so scary.
Everyone else - sorry you all seem to be having injections and problems at the moment. Hope things improve. I’ve spoken to the district nurses just now and they will take blood at home tomorrow for my cross match and usual blood tests pre-chemo. Got to be at the hospital at 830am and friend picking me up at 730am to take me there. Hope there are no cock ups - always seems to be on the week I have zometa and taxol and with the blood transfusions as well - lots of opportunities for the hospital to make mistakes!!
I also find if I make long posts or stop halfway through, they disapppear. I thought with the new system it might be better but it has’t and I find it very frustrating.
Hope to make live chat tonight but on own with youngest so bound to be late if at all!!
Had a good weekend with mum away and liver coped OK with the odd glass of sherry. It was my ankles that kept swelling and my belly did at times. Can’t believe the shape I am. I’m so skinny apart from my swollen belly - makes clothes look very odd.
Love to you all and if don’t catch up with live chat tonight - I’ll post thursday to see what happened with my taxol, zometa,blood transfusions and LFTs and if I can have half term off. Tomorrow is my 10th taxol so think I deserve a rest!
Thinkng of you all
Katexx
Hi
Beli hope hings go ok at hospital on Wednesday, glad to hear you have your daughter on injection duty, mine is in charge of blood pressure monitoring because of the Avastin. It is sky high at the moment, I am putting it down to being so stressed and the fact that I went to work yesterday and had a couple of demanding clients!
Cathy hope treatment all still going ok , I am back on Friday for Taxol
Kate glad to hear you had a good weekend, hope you have an incident free time at hospital!
Best Wishes to all
Kathryn
Psyche - Kate has given very good and specific advice about the oncologist, i wouldn’t have anything to add to that !
Beli- i hope that you have some good information from your oncologist, I am sorry you are still having the pains in your side. I have 4 injections to give myself, but boy do they work my WBC cell tripled in the week and my red blood cell count went up from taxol 4 to 5, really makes a difference. The only problem is it gives you a terrible back ache for about 24 hours. Injections are a funny thing - sometimes it hurts and sometimes it doesn’t.
Kathryn- I think this work thing is getting harder as the atmosphere is so utterly vile with the credit crunch etc. everyone is so anxious and stressed about everything and they are taking it out on everyone, I am having strange problems with colleagues and I do wonder if they see me as a soft target. I did manage a trip to Frankfurt on Sunday and came back on monday which was good,
Definitely its the GCSF injections - they warned me about it on my previous chemo and rewarned me on this one. I am on weekly taxol and having them for 4 days - so taxol on tues, injections - weds to saturday, appalling back ache for roughly 24 hours, but first 12 hours were the worst…I took co codamol and hit it on the head, but it still hurt. On the plus side these injections really work, my WBC shot up and RBC increased between treatments.
Hi Cathy
My business partners are a bit like that, the sympathy wears off and I always feel that there is resentment when they are still in the office and I am going home early, exhausted it has to be said! We have had to make redundancies and they are having to pay for a locum for me while there are people in the property department at a loose end. My BUPA renewal has just come in which is a fortune as you can imagine! With the GSF injections, I thought it was just one per cycle but have never had it as my bloods have held up throughout chemos but I realise it may become necessary
It is my blood pressure that is worrying me at the moment not helped by work!
Take Care
Kathryn
Thanks Katherine, Ibufrofen did mine. I took temp first as the reason they are giving them to me is that I ended up on the ward for 4 days after first Docetaxel - hightemp and neutropenic. don’t want to do that again if I can help it :-/
Hi everyone
Just reading through the posts here - its allsuch hard work isn’t it ? And then to have work problems on top…you’d think people would have more sensitivity…
By the way - what’s a GCSF injection? Something to help falling blood counts?
I’m having traement in London where I was originally treated but now live in Brighton - has anyone had the experience of transferring …I am worried if I will get same treatments offered as I do at St Mary’s in Paddington in Brighton …and have to say I saw some pretty awful comments about Brighton on this website but didn’t really pick up the details - someone clearly had a bad time there - and had to be transferred to Marsden -
any advice would be most welcome this Thanks …hope injections are going ok and mean people at work trip over their ego’s …
you make me laugh! there are alot of egos in this business, I won’t write much about it but I am right in the heart of evil credit crunch type people, Kathryn, we have to remember they have to accomodate us under the DDA, thats just it and we shouldn’t feel guilty- but i suppose it doesn’t make it easy.
GSCF helps boost your blood counts so you can keep to a treatment schedule and you don’t become neutropenic (which is total absence of White blood cells I think ) and very vulnerable to infection.
Personally I would always want to be treated in London as you would then be at major hoospital where people are learning , theyhave contact with other colleagues and there is more access to drug trials etc. There has been alot of negative feedbaclk about Brighton. But this is very easy for me to say as I live in London and always have done, and I don’t have to manage the trip up and down for treatment, its hard enough to drag myself home after taxol and avastin. So this is reeally jsut my opinion, whether there is any real difference in treatment options - I honestly don’t know.