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my update

34 REPLIES 34
debsincornwall
Member

Re: my update

Hi Jane
Just got back from hospital and logged on, so sorry to hear your news and hope they can sort you out at the Marsden. As you know I was in London for a couple of days so I have not been checking the forum if there is anything I can do to help such as a few days in Cornwall just say the word.

Love Debsxxx

Roberta
Member

Re: my update

Hi Jane,

So sorry that the lumps are so persistantly not playing ball. I'm pleased for you that (at least for the moment) you are feeling pretty well and able to enjoy a bit of a break. I understand the quality versus quantity issue and feel that life is for living and not simply not dying..........but getting the balance right is probably easier said than done.

I hope you get some answers from the Marsden and are able to feel that you can get the best of options (whatever that maybe).

Best wishes and love from
Roberta
xx

Challsi
Member

Re: my update

Hi Jane,

Don't often post these days but do still browse.

Sorry to hear that the s***t has continued to roll for you, I won't make suggestions coz I know that your very rational side will already have checked , researched and ensured that you have all the information that you want to ask about.

I have never found your voice irritating, probably because I also like to know as much about what I am facing as possible, give me a spade any day :).

I wish you luck at the Marsden [I followed my surgeon there when she moved from our area hospital] and am sure you will make the right decision for you.

Best Wishes and give them hell.

Siggy

Kay123
Member

Re: my update

Hi Jane

Just wanted to say I'm thinking of you. This quality of life versus quantity is such a difficult thing to judge and we all will come up with different answers. Not surprisingly my views on it vary according to how many bad side effects I'm getting on the chemo!

And I definitely do not feel (at the moment at least!) like flying off around the world for treatment - as Deidre says, it would be at the cost of time with the people I love. It would also allow the cancer to take over my life in a way that I am trying to stop it doing for as long as possible - I like my life as it is and I want to continue with as much of it as possible for as long as possible.

Hope the Marsden comes up with something good.

Kay x

Jacksy
Member

Re: my update

Hi Jane,
Just to say I'm thinking of you and sad to hear your news.
Hoping the Marsden have something to offer - it will be good to get their opinion anyway, even if nothing changes as a consequence.
I like your description of your activities for a happy life.
Lots of love
Jacquie x

dm1968
Member

Re: my update

Hi Jane

Sorry to read your latest news about the lump etc and I hope that you do get some news that you want when u go to the Marsden. Everyone seems to have good things to say about the Marsden so heres hoping you follow suit.

As for holiday insurance, have you tried Miaonline, they are based in Raleigh, Essex (near Southend on Sea), if u need the number let me know. They have insured me to go to Tenerife (not quite America) but think they would quote for that, and as you know I have liver mets, so might be worth a shot.

Good luck anyway, and as I said, hope u get some news about treatment that you want.

Lots of love and take care
Dawn
xx

longden
Member

Re: my update

Jane, am so so sorry to read your latest news,crap,shit etc etc sorry not very intelligent of me but what the heck.Am sure you will have a long list at the ready for when you go to the marsden ,I know that you and Steve Johnson will have some great talks..love to be a fly on the wall.......keep being the very voice that helps so many,and let our voices be there for you every step of the way....take care ,will be watching out for your news,.....Doolally D...xx

JaneRA
Member

Re: my update

Hi Ena

My Day 8 of gem used to go by the wayside too (was on carboplatin rather than cisplatin which I think is easier....I mean carbo is supposed to be easier than cisplatin, though in trials I think cisplatin is marginally better.) Sounds like you've been having a horrible time. The oncs simply don't know whether any partic chemo will work for any particular patient. Sometimes I think oncology is just in the dark ages of medicine. Why can 21st century medicine do heart transplants and look a like reconstructed breasts but can't cure cancer??

Gem and carbo..6 cycles kept my tumours the same size while I was on it, but they started to grow again as soon as I came off it (I have one lump in my neck in particular which I use as a personal benchmark.)

Thanks Irene...I think the site gives me a voice which I know sometimes has irritated people, but having a place to use that voice is what keeps me sane..and if helps anyone else thats great.

Jane

Ena222
Member

Re: my update

Hi Jane
very sorry to hear your news. I always look at your posts because I feel I can identify with them...not that I am exactly in your position but just your thoughts generally on living with breast cancer.
My small update is that being in hospital 72 days hooked up to a drip did nothing to ease the effects of cisplatin/gemcitibine combo. In fact, I felt too ill to go for the Day 8 treatment of top up gemcitibine, so that has gone by the wayside. Have to go for dose reduction next time around..see if that helps. I keep pushing the Oncs. to tell me if the chemo is going to work - pretty vague in their responses although I appreciate it is hard for them to know. I have felt quite happy because the lump in my sternum, which protuded quite a bit into my skin and showed quite markedly, had shrunk - however in the last few days it has been getting larger....don't know what that is about...
Anyway, take care and let us know how you get on at the Marsden,,,and keep making the most of life.
Ena xx

JaneRA
Member

Re: my update

Well me and a really positive onc will be quite something! Thanks for advice Geraldiine.

Deirdre..thanks..yes it was ixempra. I think your analysis of the trade off between x and y is spot on. And yes you are right..we will all answer the question differently.

Jane

IreneM
Member

Re: my update

Jane

I am sorry for this latest blip. I just wanted to say you have been an inspiration to many on here, and if we can help by listening to your fears that's good. Yes, we need a cure soon. Keep well and keep us up to date.

Love Irene

Gerry69
Member

Re: my update

Hi Jane - I'm under Steve Johnson... He is lovely but only gives you what you ask for. He has me sussed he drip feeds me news and information as I ask for it - he is also really positive (which is great for some!) Given the tone and content of your posts I am sure you will go armed with all the questions you want answered which was going to be my advice.

Good luck let us know how you get on.

Geraldine

lizziecee
Member

Re: my update

Hi Jane - thanks for your response - brilliant as usual. I too have fantasies - having a small intestinal transplant! I did read of it being done experimentally in the US a few years ago, but had almost forgotten about it.Yonks ago when my husband asked what I would like for Christmas and birthday presents I would always respond: "A new set of guts, please", and we would have a laugh over it. Will ask my gastro about this next week as it sure beats having an ileostomy bag and/or staying on weekly injections of mathotrexate for life. We did talk last week about trying the new anti-TNF biologic therapies,(Humira, Cimzia,Remicade etc.) but he said in view of my breast cancer, and that the stricturing would be made worse, he is very concerned at the risk of lymphoma. Gastro is arranging a whole body MRI scan and I must say the thought has occurred to me that the bc may have, very unusually, spread to my GI tract. Best not to go there. I did ask him about when I had the gastroscopy, and he said bc can rarely metastasise to the GI tract, but he personally had never seen it, but had read the literature.

I sometimes think I am drowning in a sea, no lifeboat or life-belt, but somehow I pick myself up, Mainly I guess because I have an almost 80 yr old disabled husband, who has given me a wonderful life and never complained of my incurable illnesses. We are hoping to get some kind of help and diagnosis on Thursday when he has a private appt with a Professor of Neurology at the Nuffield. I have an idea (because he ticks all the boxes) he may have an auto-immune disease that attacks the myelin sheath of the nerves that control walking - Chronic Inflammatory Demyleinating Polyneuropathy. This Prof is an expert on MS, having published many studies on the use of cannabis for MS, underwritten by the MS Society, and as CIDP is allied with MS, may know something about it, can do an EMG and sural nerve biopsy, or at worst, refer us to a neurologist who has treated this disease. I read about him in a recent article on Polly Devlin, the author and broadcaster, (his wife), wrote to her, and Mr. Garnett wrote a very informative letter to us explaining it took 12 yrs for him to be dx, and now can only walk with 2 sticks and has balance problems, as my hubby does. In fact Polly Devlin, who was teaching English at Columbia University at the time I wrote to her, sent a lovely card last week saying how hugely impressed she and her husband were by the way I spotted the ref to CIDP in the two page article on her. It was just 2 sentences, but a light bulb went on in my head, did some research and got hubby a private appt. I am a little terrier where my gentle giant is concerned.

love,Liz.

Becks
Member

Re: my update

Thinking of you Jane

Becks xx

Deirdre
Member

Re: my update

Hi again, Jane. I suspect the drug with the horrible side effects you are referring to that is being used in the States is Ixempra? It seems to be really harsh from what I have read.

I do agree with you about quality of life. The last four months for me, while on chemo, have been yuck and it is only now that I have finished chemo and started to do normal things again that I realise how much I value quality of life. In many ways, chemo is a trade off, i.e. being prepared to trade x number of crap weeks on chemo for y number of well weeks while off. Of course, we hope that y is greater than x but, sadly, it doesn't always prove to be and you therefore get down to the really tough question - is feeling ill and shitty time better than no time at all? Different people will answer that differently depending on their circumstances and views.

If money were no object, I don't know whether I would be flying around the world in search of treatment either. It would be at the cost of time with my kids, family and friends here and that's the last thing I want. There does seem to be a lot more going on in the States - stem cell transplants, new antiogenesis drugs and new approaches to hormonals. I guess what I would like to see is the fast tracking of these treatments through the NHS once they have been tested in other parts of the World so that they become available to us sooner.

So I will join you on the holiday, Jane. But I have no answers I am afraid on the insurance issue. Maybe if Lizziecee wins the lottery she could underwrite us?

Deirdre

JaneRA
Member

Re: my update

Hi Liz

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

very best wishes

Jane

lizziecee
Member

Re: my update

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.

Love and cyber hugs,
Liz.

JaneRA
Member

Re: my update

Hi Kate

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.

Yes hope we can find a good date soon.

Love Jane

dippykate
Member

Re: my update

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

Deirdre
Member

Re: my update

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

ChristineMH
Member

Re: my update

Hi Jane,

I am sorry to hear this. I came here to see how you were. I hope that Marsden can come up with something.

Best wishes and a big hug,

Christine

LancsLass
Member

Re: my update

Hi Jane
Sending you a great big hug, fingers crossed that the Marsden can come up with something.
Debbie xx

SarahAL
Member

Re: my update

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.

Thinking of you.

Sarah

KatieP
Member

Re: my update

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

Molennium
Member

Re: my update

Sorry to hear the news

Mole

lilacblushes
Member

Re: my update

Like the others I am sorry to hear your news. Hope the referral to the Marsen is productive.

Lilac

Dahlia
Member

Re: my update

Jane

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.

Thinking of you often.
D

almas
Member

Re: my update

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.

Ann

Anthi
Member

Re: my update

Jane

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

ForumMember
Member

Re: my update

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.

very best wishes
Trish

ForumMember
Member

Re: my update

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

vertangie
Member

Re: my update

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.

Lots of love.

Angie

JaneRA
Member

Re: my update

Many thanks Lindsay

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.

Jane

mrsblue
Member

Re: my update

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.

JaneRA
Member

my update

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