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
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.
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
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
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
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
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
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
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
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
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
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
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
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