Saw my oncologist yesterday and as I expected she confirmed that the tumours in my neck etc are getting bigger ‘quite a bit worse’ she was persuaded to say when pushed. (10 weeks after 6 cycles of gemcarbo…don’t these chemos just work a treat…she cynically spluttered…me that is…not the onc) I still don’t want to go back on any treatment till at least September, but have asked to refer me to Marsden which she was happy to do. I don’t expect Marsden to come up with any miracles but want to have the avastin conversation and see if there are any trials they might take me on (or I might want to consider.)
There’s anoeehr thread on here about when other people say we are ‘lucky’. Yes that drives me mad but I do still sometimes use the word ‘lucky’ comparatively for myself (which is a different thing altogether.) Feel ‘lucky’ that strangely still no evidence of spread to major organs (well not in May…will have another scan before more tretament assuming I go for more treatment) and therefore I feel just so well apart from twinges in chest wall and worsening lymohoedma which are perfectly liveable with.
I am though s*** scared as so few treatment optiosn left for me and ‘realistic’ enough that even the Marsden can’t pop something I don’t know about out of a hat. Please someone bring on the cure.
Meanwhile my major dental emergeny ( a five tooth bridge falling out and the prospect of major dental work) has rather receded into second place in the drama stakes but thats because the teeth are temporarily cemented back…
Jane, good to read you, tho disappointing regarding your tumour progression.
I too squirm re the word “lucky”, for different reasons from yours (!)
It’s good that you have the opportunity of referral to the Marsden. True realist that you are, OK the Marsden team might not produce that cure, but I have no doubt that they will offer the highest standard of care for the whole person.
And I hope that despite dental difficulties, you are finding much to enjoy this summer.
Best wishes
Lindsey.
My current onc is actually rather good at the whole person bit…I’m kind of looking to the Marsden for the latest in clinical advice…like what do they really really know about the overall prognostic benefits of avastin.
Lucky is winning the lottery… Ok maybe treatments are improving and most of us are luckier than we might have been but lucky… I don’t think so.
Hope the Marsden can offer you something Jane… fingers crossed but I think your realistic attitude is such a healthy one. I’ve got no secondaries that I know of but when people say you’ll be OK I do have to stop myself asking if I could possibly see the crystal ball for myself LOL.
Very sorry to read this news Jane, but I am sure you are holding on tight to the information that there is no evidence of anything more distant. Do hope that you can get some helpful information from the Marsden, in addition to the “whole person” care that your oncologist is giving you. It must be so scary, and I can only imagine how you are managing to cope. Thinking of you, as I am sure we all are - one of our most respected and indispensable “posters”. Let us know how things go - Very best wishes. Sarah
Jane,
I am so so sorry to hear this news. Like many of us here I was hoping that your ‘stable’ news could have continued for longer.
I hope the Marsden can give you up to date information about the benefits (if any) of Avastin. I know from previous posts that you feel ambivalent about Avastin but
talking to the ‘experts’ may help with decision making… As Sarah said I can only imagine the scary and lonely place you’re in.
You are in my thoughts frequently and I do so hope the Marsden can offer you some help.
I’m sorry to read that the tumours in your neck are getting bigger. It’s good that your oncologist has agreed to refer you to the Marsden so that you can at least talk about Avastin.
Thinking of you and hoping and praying that another treatment can be found for you.
Very best wishes
Anthi
Hi Jane
Sorry to hear about your news. As you say we keep hearing about these wonderful chemos, but where is the one that works. I am getting my results tomoz, to find out where, if, what and if the recurring lump can be removed??
I started with early breast cancer and good prognosis, and here I am 7 years later on 2nd recurrence, and still nothing has stopped it. I hope you get an early referral and then a good option for you.
I was told by someone I work with (a doc) that chemo makes fillings shrink, so maybe that’s why the teeth have fallen off.
I am very sorry to read of your “troubles” - master of the bleedin’ understatement that I am but you get my drift. It’s hard to be original and say anything that hasn’t already been said. I feel like having a rant and rave on your behalf but you are a tempered, measured person so will keep it buttoned for a change.
I know you take much pleasure in food and wine so I hope you can still indulge yourself a little or even a lot.
Sorry to hear about your tumours Jane’ I know you were hoping for a chemo break. Mine doesn’t seem to do breaks so I am now on my 3rd cycle of Capecitibane. I have just seen my pulmonary surgeon who drained my pleural effusion and did the pleurodisis , with only partial success. My lung is still trapped and partially collapsed and it seems that no improvement is likely. I am hugely frustrated to say the very least as I am unable to run which is really my method of choice for dealing with all the slings and arrows!
I have pondered asking to be referred to the Marsden for a review of my treatment, I am trated privately and am now worried as one of the chemo nurses is leaving , there are only 2 and I will absolutely freak if I turn up for bloods to be done and there is no one trained to access my port.
My oncologist has dicussed the possibility of Avastin so I know it is available for me but I do wonder if I would fare better or worse in a larger setting.
I do hope you get some answers
Best Wishes
Kathryn
Thank you for keeping us posted and I am very sorry that this has happened so soon. I hope you are at least feeling reasonably well and can find ways to enjoy the summer.
Oh b*gger. I was hoping that after your relatively long time to progression between your primary and regional recurrence might mean that you had a relatively long time stable.
I think you are right to go to the Marsden - even if only to check out the options. I strongly felt that I needed to be in the right place for newer drugs as and when they became available through trials.
The Athena trial I am on does not admit people who have previously had taxol (or at least it didn’t when I was admitted on it). But there may be others. And there are other drugs like Avastin coming out of the end of the pipe now.
You were asking a while ago about Tykerb possibly being effective even on those who are not HER positive. I came across a trial listed on the clinical trials database which was testing Tykerb plus a new VEGF drug called pazopanib. You did not have to be HER positive to get on the trial. ANd I think the Marsden may be involved in at least one pazopanib trial - my doctor mentioned it to me when I was last there when I asked the “what treatment might be next in line?” question.
Deirdre
I mention this one of the UK cancer trials database which
Jane - sorry to hear your dreams shattered by his lump getting bigger.I would think it was still possible to have a longer chemo break and use this time to get your holidays in, teeth fixed etc and be seen by the Maesden. I think it depends what you want out of the Marsden. Prof Steve Johnson seems to be the main bc guy but a Dr de Bono is involved in the new trials so you will need to find out whoi s the best person so you don’t make too many tips there.
Hope to see you soon. Glad your teeth are temptorarily fixed - that must make life easier for you.
Tinking of yu
Katex
Yes Thats how I see the next few weeks…teeth and all. I am seeing Steve J. At this stage I just want a conversation/second opinion on the best way forwad for me, someone who will be really honest with me about how I maximise quality time and minimise the drugs of any kind so trials my not be what I want. But want to know what the options might or could be.
Hi Jane,
commiserations about latest problem, but if anyone can get help, I know you will.
Do you ever look at the US based ibc support site? The articulate and intelligent members seem to know the latest chemo drugs and stem cell transplant info - a lot of them go to MD Anderson Hospital in Houston, Texas, even travelling great distances from other states, to see a world leader in ibc who is doing clinical trials. His name is Dr. Cristofanilli , and although I realise you do not have ibc, you do have a complicated diagnosis, and indeed, prognosis.You could see if your Onc can get a written evaluation of your personal condition from him or one of his team as I expect travelling there is out of the question. If I win the lottery (won small amounts for each of the last 7 weeks), I’ll send you money - and accompany you! Bit of a pipe dream though. Just trying to do some lateral thinking which is difficult with chemo brain.
When I was dx with bc in Jan 2003 my original Onc made me stop my Crohn’s med, methotrexate, but said he had not treated a patient with concurrent diseases and had no idea what to do if I had a flare during FEC chemo. Gastro said he could not intervene in my bc treatment. Before I agreed to FEC I emailed every major hospital in the US and England I could think of, for advice…they, without exception, replied very quickly. Only one reply had relevant experience - a Professor of Gastroenterology at St. Marks Hospital for IBD, and gave me advice on what they had done, even copying my new Onc and existing Gastro and stating I had to discuss his advice with them before making any decisions. We heeded his advice, and although I had to go onto an elemental diet (no food for 4 months) it worked and I am here to tell the tale.
Take care, and please keep us posted…I think most of us look forward to your posts - no shilly shallying, just straight talking with good, well researched information.
Thanks for your suggestions. I am in many ways a simple and cynical soul! and actually have no intention of flying round the world looking for a treatment which won’t help much or a cure which isn’t there. Would love a trip to the States but for a holiday! (now where can I get travel insurance!)
Neither my diagnosis (triple negative regional recurrence) or my prognosis (eventual death from breast cancer in time indeterminate…6 months if goes pear shaped…a few years with luck???) are particularly complicated though the speed (slower than expected) and the presentation (regional recurrence without immediate mets) are ‘fairly uncommon’ but ‘not rare’ to quote my oncologist. And having triple negative bc at this historical moment isn’t the best.
In traditional treatment terms I have the option of taxol left, maybe a return to other chemos I’ve had already…vinorilbine for example which did of the 4 chemos I’ve had in the last year seem to ‘work’ best. Maybe try avastin…but trial evidence about efficacy mixed, and maybe a few Phase 1/11 trails…but most Phase1/11 trails don’t lead anywhere. In USA they are using a chemo called Impressa(or somethign smilar) but it sounds like horrible side effects for not much benefit so I’m rather glad its not avaialble here.
My life priortiy is to live as well as I can (a simple life of lunching, trips to nice places, occasional work in little p/t job, talking and laughing with partner and friends and packing in as much reading as poss) for as long as I can taking treatment only to try to slow things down a bit, to relieve synptoms later on, but not to take tretament at the expense of quality of life.
Like anyone else I guess with cancer I have fantasies about some little miracle happening to me, and the fantasies provide one strategy I have for living with this crap. But I know they are fantasies.
I’m not of a stoic dispostion and I hate being ill…(right now am not ill…just inconvenienced by an incurable disease) I cannot imagine how you have lived with such awful symptoms for so long. Being here to tell the tale is one goal, but I have another…to get the best I can out of a shorter than hoped for life.
Just thoughts…its the rational, thinking me that is my strength and gets me through