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I'm stopping active treatment

47 REPLIES 47
Dee
Member

Re: I'm stopping active treatment

Hi Jane
I totally respect your gutsy decision. Glad you had a fab time in Cornwall. Wishing you and partner many happy times together in all the adventures you decide to venture on. I bet you can feel that freedom, away from all the active treatment you have had. Best wishes, Dee x

JaneRA
Member

Re: I'm stopping active treatment

Ena

If you go into my profile you will find the address of my website. Once you're in the website click on Main Site to read. PM me if any problems.

Jane

Ena222
Member

Re: I'm stopping active treatment

Hi
good, glad that is sorted !
How do I get into your blog? are you willing to tell me the address as I am interested to read it.
Others on this site also mentioned dippykate's blog which I managed to find but I don't know how!
Thanks
Ena

JaneRA
Member

Re: I'm stopping active treatment

Thanks Ena

Lots of people do understand where I'm coming from and I'm sure you do. My last post wasn't addressed to you...just happened to come after you had posted.

But I've found among both real and cyber friends some misunderstandings..so wanted to elaborate a bit for them.

On my blog I've written a piece called "Not dead yet or How long have I got"...

Many thanks again for your messages

Jane

Ena222
Member

Re: I'm stopping active treatment

Hi Jane
I just want to come back on your post of yesterday.
I re-read your original post on 21 March to check I had not misinterpreted what you were saying.
Firstly, I realise that you are not about to die and did not mean to imply you were
Secondly, to the question of stopping chemo or not. Your original post on this subject is called I'm stopping active treatment. It is more like Active Treatment is stopping you.
By that I mean Active Treatment is making you feel ill and stopping you doing what you would like to do.
And I also understand that you are stopping active treatment because it is not really working. And not because you are just fed up with the chemo making you ill weighed against the possible gain.
I hope I am making myself understood. I wanted you to know I did understand your message and maybe my reply did not make that clear.
Ena

Becks
Member

Re: I'm stopping active treatment

Jane

Haven't been on here for a while. Just wanted to add that I often think about you and admire and enjoy reading your posts as you so eloquently describe many of the struggles that we individually face in our own tiny way silently as we go about our lives, knowing that rarely anyone does really know what we have to face and live with. You are an inspiration and tower of strength to many.
Take care.

Big hug

Becks and girlies xxxxx

KatherineM
Member

Re: I'm stopping active treatment

Jane - Michelin food in Cornwall? yummy famtastic, I hope you had some really good seafood, should you post more on the gormless thread? Glad you had a great time,

cathy

JaneRA
Member

Re: I'm stopping active treatment

Many thanks for all your comments. I've had some 'interesting' private ones too, from real time friends and cyber friends.

I do want to emphasise that I'm not about to die...I've decided to stop chemo now so I can be sure of at least some well time...I've no idea when I'm going to die...I may not be having treatment but in my case the tretament wasn't working anyway and the cnacer has spread slowly..as cancer goes.

Also to clarify...the decision wasn't in a way about carrying on with chemo or not carrying on with it. Basically I've used all the standard options and though yes I could have stayed on vinorelbine for a couple more cycles...the scan produced evidence it was failing and my onc agreed there wasn't much point in continuing. I have decided not to seek off licence drugs or a Phase 1 trial because for me they don't offer enough possibility of delaying spread of cancer.

I think these quality v. quantity discussiosn are complicated...I've wobbled at times over the past week and yes I agree being on treatment can create its own dependency which is hard to throw off.

But I had a lovely weekend in Cornwall....spending huge sums on michelin starred food.

Thanks again.

Jane

Ena222
Member

Re: I'm stopping active treatment

Hi Jane
I cannot believe how many rounds of chemo you have actually gone through. I have had only two rounds of chemo so far and there is the prospect of a 3rd in the pipeline but I am hanging back for as long as possible. I literally end up in bed during most of the 3 week cycle, particularly with the 2nd lot, Gemcitibine and Cisplatin.

You are very strong to have put up with so much treatment, but I think there must come a point where it is far better to have a reasonable quality of life, for a shorter time, than more treatment which gives one more time but that time is spent feeling very ill.
I am not sure I could cope with having the amount of treatment you had already had...
So, enjoy what time you have and I hope that is longer than you think
Ena x

Jackson2
Member

Re: I'm stopping active treatment

Dear Jane

As somebody who would definitely make the same decision as you have, I just wanted to send my very best wishes to you and hope that you enjoy a wonderful 'window of opportunity'. I hope that you have some lovely happy times, feeling as well as you possibly can, and that your 'window' has far reaching views.

Jez
Member

Re: I'm stopping active treatment

Jane

I don't post very often, but just wanted you to know that I'm thinking of you. We haven't always seen 'eye to eye', but I hope we're both mature enough to respect each other's views. Even though you have, at times, 'done my head in', I have an enormous respect for you and am always amazed at your knowledge and neverending support for us all. If I was in your shoes, I think I would do the same. Chemo is not pleasant and going through it once was bad enough. It's your life Jane and your choice, enjoy your life and your beautiful partner. Laugh a lot, get drunk, dance naked in the rain (if you do that one, I'll def take my hat off to you), but most of all, grab it by the balls and run with it. You are the most amazing person and I know, whatever you do, you'll have no regrets.

Love & respect (as always)

Julie x

jantharra
Member

Re: I'm stopping active treatment

Dear Jane

I have been away from the boards for a while and on coming back I saw this posting from you.

Although our disease progression is similar in the way in which it has presented, you have a lot longer dealing with all this than me, and who knows how things will change. I don't actually think that any of us can really, really, understand anothers suffering and feelings, we only truly know our own and what it is like to open our eyes and see our life. You have spent so much energy on dealing with this hateful disease and you have coped with it, I understand that coping with the side effects is now not the points, but that now is the time to live the rest of your life living, and I hope you get all that you want done and lots more!

I wish you all the best wishes in the world, and I hope that everyday brings you some happiness, something to smile about and that many more good thoughts which I simply cannot put into words now.

Luv
Nikki

dippykate
Member

Re: I'm stopping active treatment

Jane - I think we all knew you would make this decision at some point and what is the point of you having a miserable time on chemo when you could be out and about enjoying yourself with partner and friendships.
For me, the quality of my life has become more important to me as the actual time of my life has become shorter.
Go off and have a lovely time going to the places you want to see and with the people you want to be with.
Really hope we can meet up and will write to you soon.
Love as ever to you
Katex

Rosdubh
Member

Re: I'm stopping active treatment

Hi Jane

Your post are always informative and genuine and you have been a great source of help, information and inspiration to me with my few postings.
I have enourmous respect for you and wish you all the best with your decision.
I continue to look forward to your future illuminating and intuitive postings.

Love Rosdubh x

pollysue
Member

Re: I'm stopping active treatment

JaneRA
You are one brave lady.I have browsed these forums for a while and have always found your posts to be most informative and inspiring. You are 'a well read lady' on the subject of breast cancer.
Very best wishes to you and your partner in the months ahead.

Lyn

taffy
Member

Re: I'm stopping active treatment

I only became one of the secondary group a few weeks ago and am still in a state between shock and denial.I have read your posts Jane since first joining the BC club in 2004 and always admire your thoughtful and well written posts.I think it takes a lot of courage to make the decision to stop treatment as you have and hope when l reach a similar point that l can be as brave.Hope you and your partner have a fantastic summer.Love Sharon xxx

quattroformagg
Member

Re: I'm stopping active treatment

Dear Jane,
I don't write that much on this forum, I am trying to forget things sometimes, but many ladies here are often in my thoughts and you are one of them. I wish you a very good summer, and possibly much more that that.
Hugs
Sabrina

BoneyL
Member

Re: I'm stopping active treatment

I would just like to echo what Jacquie has posted and hope you get a long period of chemo-free living.

Best wishes

Linda
x

Jacksy
Member

Re: I'm stopping active treatment

Hi Jane,
Just wanted to stop in and say something in support of your decision, but everyone else has said it all so well already. Thank you for being so open about your thoughts, it is so very helpful to the rest of us who are only just catching glimpses of the same big questions. I was so sorry to miss the meet up on friday, but so pleased to hear your voice was noticeably better. Big hugs and love
Jacquie xx

Bex1
Member

Re: I'm stopping active treatment

Hi Jane,

Thank you for this post, you are very courageous to be so honest. Anyone who has had half the drugs you have had will understand the toil they take and the balance between feeling crap and knowing some (but often limited and temporary) good is being done, versus feeling relatively well but knowing the disease is progressing.

I hope you have some wonderful holidays and feel well for as long as possible. I only hope I am able to follow your example and recognise the right time to stop and enjoy the time I have left when it comes.

Lots of love

Bex1 xxx

Bahons2
Member

Re: I'm stopping active treatment

Hi Jane

I'd like to thank you for posting about this most difficult of decisions and how you arrived at it.

I hope your 'indolent' cancer becomes even more so over the coming summer and look forward to reading many more of your incisive and insightful comments both here and on your website.

And I hope also that you can soon get hold of some tip-top treatment for your arm and feel generally more comfortable.

X

S

india1
Member

Re: I'm stopping active treatment

Jane,

Thank you for posting about such a difficult decision. You're right, I think hope isn't just about the next treatment, but the anticiptation of feeling well enough to enjoy now. I hope that you recover from your last chemo to really enjoy the summer with your partner.
Best wishes,
Nicky

Marilynleah
Member

Re: I'm stopping active treatment

Jane

I'm sorry that the current treatment has stopped working. I hope that you manage to get through alot of the things on your to do list. I've admired your determination for a lomg time and hope that if I get to a certain stage I'll be able to stick to my guns and say 'no'.

Have a lovely Summer, enjoy holidays etc

Take care
Marilyn x

jaynemh
Member

Re: I'm stopping active treatment

Hi Jane
I understand this a lot more since our chat about chemo options ....and I think it sounds like a positive choice - and the right one for you now - also its one that I know I will have to make one day - willing the sun to shine , Jaynex

PatriciaM
Member

Re: I'm stopping active treatment

Hello Jane

I suppose I have been dreading seeing this post but realise that is is the right decision for you, and sincerely hope you have much more quality time now that you are releasing yourself from the relentless side effects of chemotherapy. Our situations are a little similar, as much as anyones cancer is similar to anyone elses, and like so many people on this site I value your posts tremendously. Have just written to you on another post before I saw this.....

PatX

jools
Member

Re: I'm stopping active treatment

Jane,
I hope you get the opportunity to experience many holidays and tick many many items off your 'to do' list.
I hope that when I am in your situation that I can be as brave as you
Lots of love
Jools

KatieP
Member

Re: I'm stopping active treatment

Jane it was great to see you on Friday and I for one hope to have many more meets. I think that one thing that you realise from talking and listening all afternoon is that we all come to this with different experiences our disease progression has also all been different and our responses to treatment. It has to be a very personal decision certainly for me quality and the ability to do what I enjoy is paramount but I have been lucky in that I have tolerated chemo relatively well, even so I resent how it impinges on my life!
Keep us posted about your holidays and treats!
Love Kathryn

KatherineM
Member

Re: I'm stopping active treatment

jane

I think it makes alot of sense, no one could possibly criticise you. I am not sure I will ever have the courage to do the same...even though I think I certainly understand now about quantity vs quality. The summer is a great time to aim for quality. I hope you and your partner have some great trips planned- and you will now have the energy to really enjoy them (and if flying to get through the auirports). It was great to see you the other day - and I did mean it that your voice has improved.

Cathyx

judyw47
Member

Re: I'm stopping active treatment

Jane

Wishing you a lovely summer with some fab trips away. As mentioned in earlier posting........dont go away for too long as I find your advice on here brilliant!!!

Best wishes Judy x

renee
Member

Re: I'm stopping active treatment

Hi Jane,
I for one would never criticise you for making what is a very sensible decision for you and your partner, it is a very hard road you and others including myself are going down, and i hope when my time comes to make that decision i will make the right one and remember that quality of life sometimes has to come before quantity.
Younger women with children might prefer quite naturally that they want to have the most time possible but when your children are grown or you don't have children then it is different.
I have to say that with you making this decision and dippy kate ill in hospital, it makes me feel so sad because although i don't know any of you personally you get attached to certain people reading their posts, you get the feeling you know them. Anyway Jane i hope you will still be posting for a long time to come.
Love Reneexx

Gerry69
Member

Re: I'm stopping active treatment

I'm now you wont have tushed inot this decision lightly - glad you are confident enough in your own mind and have the support of a strong partner - good for you - get on an enjoy some chemo free time.

Gerry

JaneRC
Member

Re: I'm stopping active treatment

No-one can criticise you for doing what is right for you - we all have to choose our own path through this. I hope the sun is shining on you (literally and metaphorically). I am sure many people on this forum have always welcomed your no-nonsense approach.

Love,
Jane
x

Blackheath
Member

Re: I'm stopping active treatment

Dear Jane
A hard decision to make but I guess priorities change. Here's hoping you have a wonderful summer
big hug

nicky08
Community Champion

Re: I'm stopping active treatment

Jane

As always you give everything much thought so we all know this is not a rushed or rash decision. Enjoy the sunshine and get on with the 'to-do' list as soon as possible, last chemo permitting!

Nicky x

sharonc
Member

Re: I'm stopping active treatment

Hello Jane,

Just sending love. Hope you are enjoying the sunshine.

Sharon x

debsincornwall
Member

Re: I'm stopping active treatment

Jane
I understand completely where you are coming from. Quality of life versus extra time with loved ones. Ian and I have had several chats in the past few weeks about this. Well I will be honest, I have chatted he has listened with tears in his eyes.
Taxol and avastin have bought me an extra 12 months so far, but the tiredness, loss of freedom, inability to walk further than bed and bathroom all has to weighed up. I jumped the scan queue and high jacked onc on Friday and I am having a chemo break. If my recovery from chemo is not evident in the next 6 weeks I will know it is down to the aggression of the cancer. Then I may or may not go back on chemo.
Enjoy your chemo break and have lots of wonderful memory making time with your loved one. It is the one thing we can leave to them that will stay with them when we can't
Love Debsxxx

bikinggirl
Member

Re: I'm stopping active treatment

Hi Jane,

I am really not surprised to read your post and I too wish you a fantastic summer and lots of 'ticks' on your to do list.

I am one of the more 'cherleader' type forum members that is alway possitive and wants a good news story HOWEVER I have always been of the mind quality over quantity.

I do have a young family and have just celebrated my 40th but chemo always made me so ill that I could never understand what was so brilliant about living a few more months if you sleep through it and I don't want my children to remember me always ill and grumpy.

It has been really refreshing for me to read your post.....yeh... there you go Jane.... you have just become a huge inspiration to me.

Do you feel as though a very heavy weight has been lifted from your shoulders?......

Anyway I shall end my post now before I start on the 'well done you, how courageous..........'

Tongue in cheek

Bikinggirl.X

SueCheshire
Member

Re: I'm stopping active treatment

Jane

Good luck and I hope you and your partner have a wonderful summer. I was on tax last summer and I can't bear the thought of being on chemo this summer. I am waiting for the results of bone scans/xrays to see how my mets are doing.

Celeste- I really fancy Tunisa (love desert scenary)let me know about your hol and have a great time.

Sue

manon
Member

Re: I'm stopping active treatment

Jane

They are forecasting a really good summer this time round and let's hope that for once they are right and you get your time in the sun free from treatment side effects.
It was good to see you on Friday. Look after yourself
x
Barbara

carolinew
Member

Re: I'm stopping active treatment

Hello Jane
I don't ususally post very often on your posts because you have such a way with words that I always feel you have said everything that needs to be said. (I only wish I could be the same) I am much better speaking to people face to face.
You have always posted when I have had problems which is why I just wanted to say that I am sure you have not made this decision lightly and I should imagine that In some ways there will be a sense of relief.
Make sure that you book up something nice to to do and enjoy your time without the chemo effects
love CAroline

Piper
Member

Re: I'm stopping active treatment

Jane you are doing what is right for you so no-one has the right to stand in any sort of judgement on you.

For my part I wish you every ounce of enjoyment you can get out of life, and I'll look forward to hearing all your 'to do's' as they get done...go girl!!

Take care, big hugs, Di xxx

Jane
Member

Re: I'm stopping active treatment

Take care Jane and thank you for your helpful comments to me

Other Jane x

AnneS
Member

Re: I'm stopping active treatment

Hi Jane,
It sounds like you've made a very clearly thought-out decision to me and obviously tried so many chemo options.I've always believed that quality of life not length of life is the most important.
I hope you enjoy planning and going on holidays and ticking off your "to do" list. Do keep the posts coming.
I'm on a chemo break at the mo and feel so much better for it but know it may beckon again but there may well come a point when I've had enough. Thankyou for being so honest and open about it all.
Anne

belinda
Member

Re: I'm stopping active treatment

Jane I hope your quality of life improves now..and you get some time to enjoy life, the summer. I used to think I would try anything to sqeeze more time here but I'm now older and perhaps a (little) wiser and feel my quality of life is now the most important priority.
I went to a family funeral this week, my Uncle had leukemia and lived well for some time with his illness but he didn't want his quality of life to decline so made some decisions on just when to stop all active treatment. The end was swift and peaceful. He was an inspiration to me and I feel I've learnt much from meeting him so often during his illness..we always seemed to book the same hospital days!
I think I can almost feel the sense of relief from your posting.
Take Care! Belinda...xx

celeste
Member

Re: I'm stopping active treatment

Jane, I think that's probably me you are referring to when you felt criticised. That was i think a different context, and i can see no reason for criticism or disagreement here. I am sorry that the chemo has ceased to work for you, and it certainly sounds like you have tried a hell of a range here, and been through an awful lot.

I think the holidays and ticking off the to do list sounds great, and i hope you've got some really great destinations to go to.

I've always found a holiday revitalises me, and I almost feel normal, so i hope that you'll feel better on hols too.

As i've said before Jane, we cannot afford to miss out for too long on your posts so make sure it's short breaks or there is wifi!

Take care - i'm off to Tunisia in the morning, would you like me to check it out?

redders
Member

Re: I'm stopping active treatment

I think what you are going to do sounds very sane and sensible, Jane, and I hope you have many happy holidays and times ahead of you. There obviously comes a point when the treatments have to be assessed against all the side effects and long term efficacy of them. I suppose some people want to continue chemo even when it's not really working because they would feel scared to be having nothing - perhaps years of treatment gives its own dependency. My very best wishes to you, I always like to read your posts - so keep them coming!

cass141
Member

Re: I'm stopping active treatment

Hi Jane, I'm so sorry that the treatments haven't been of more help to you. I think that any decision that you come up with has to be the right one, for you. I can understand you feeling relieved, more confirmation that it's right for you. My situation is different - dx Oct 2.5cm Grade 3 10/18 nodes involved. I had WLE and node clearance, now having 3xFEC and 3XTax - last one on 2nd April then 15 Rads then Tamoxifen. I don't know your history but I do know what a god-awful disease this is and the devastating effects it has on everyone. All I can say is that I wish you, and your partner all the best. I think you're right about hope, since my diagnosis my version of what hope means has been ever-changing. I'm hopeful that my situation has a positive outcome, none of us know what the future holds, we can only take it as it comes and deal with it in our own, individual way. I hope you enjoy many, many great holidays and I'm sure there are good times ahead. love and hugs Pat x

JaneRA
Member

I'm stopping active treatment

I have had four and a half cycles of vinorelbine and my CT scan last week showed still not progression to major organs but slight worsening of tumours in my neck and chest wall (slight worsening is on top of significant progression on last scan in December). I had a long talk with my oncologist on the phone on Thursday and will see her on Tuesday. Both she and I agree that the vinorelbine probably worked for the first three cycles but is now failing (the thing with tumours you can see and feel and which cause lymphoedema is that you can easily monitor them clinically).

So I have used all the standard treatments for triple negative breast cancer (AC, taxotere, xeloda, vinorelbine, carboplatin, gemcitibine, taxol and vinorelbine a second time.) The drugs which are available on trial or in other countries which could be used include avastin, sutent, abraxane, ixempra...none of which have good trial results particularly in heavily treated cancers. I could try pegylated doxuribycin, a version of the C in AC which failed spectacularly at primary stage for me. I could go seeking a PARP trial at the Marsden but have decided its not for me (Phase 1 trials are about testing dosage and side effects and have tiny statistical chance of significant success...if I were younger or had children I might go for one.)

Instead I have decided that I want to take well time as far as I can now. If I continue on chemotherapy, continuing to experience severe fatigue half the time, then when I get further spread I will be too ill to enjoy the time I have left. So I see the coming time as a 'window of opportunity' to take some holidays, get on with my 'to do' list.

The spread of my cancer has been unusual...an aggressive cancer has turned out to be 'indolent' and bought me more time than I dared to hope for 5 and a half years ago. I know that fairly soon my lymphoedema arm will get heavier, that eventually I may lose use of it, that the deferred pain I get in my back and the twinges from tumours will get worse, so then I'll go for the 'management' route. I hope my half strength voice, damaged by tumours, won't get any worse...as has been promised..

I am in many ways wary of posting all this because when I started to explore it on another thread recently I felt I was criticised. Hope is so often equated only with the search for more treatments, but I think sometimes hope has to be reframed and looked for in different ways...which is what I am doing...hoping for management of my symptoms, hope that my major organs stay free of cancer for as long as possible, hope that the regional tumours don't fungate yet, hope they don't yet squash my lungs, hope I can have a good summer, so many hopes. I don't play 'guess the time I have left' game with my oncologist...she doesn't know and neither do I. Always it could be within six months or more or less...for each of us with mets. I believe for myself that the decision I am taking gives me the chance of the best quality time I can get.

My partner is with me on this and we both feel relieved. Sadly I didn't get scan results until after my chemo on Thursday (they had got lost between radiologist and oncologist) so I am having one (last) exhausted chemo weekend. If in future I get bone mets or brain mets I will take treatments for them, but I think my chemo days are over...

Jane