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Update on me (Lemongrove)

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Re: Update on me (Lemongrove)

Jane that's very nice of you. In the past, I have been helped by other members on here, and I think those of us with secondaries are in this together. We all know that what happens to one person today, can so easily happen to someone else tomorrow.

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Re: Update on me (Lemongrove)

Hi Lemongrove,
Not sure what has happened as I just posted something here and it seems to have disappeared.
At the risk of repeating myself I just wanted to say I am sorry you have been having a rough time.
You are an inspiration, finding time to support others when you are going through so much yourself.
I hope your newest round of treatment is successful.
You deserve so much good luck.
With thanks and best wishes

J2013
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Re: Update on me (Lemongrove)

Dear Lemongrove,
You are an inspiration. With everything that you are going through you still spend time supporting others. I really hope that the treatment you are having is a success.
You have a wonderful attitude and deserve so much good luck.
With best wishes and thanks

J2013
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Re: Update on me (Lemongrove)

Good to see you back on the boards, LG, and I'm so glad to hear you've come out the other side of what must have been an awful time. Fingers and everything else crossed that you're healing well now and that this chemo combination will work well for you, with minimal SEs. Take it easy.

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Re: Update on me (Lemongrove)

Hi Lemongrove,
Just wanted to send you hugs and best wishes and am pleased you are feeling better. I too look out for your posts as they are so informative.
Love
KQ

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Re: Update on me (Lemongrove)

Dawn, just to say I'm thinking of you and hope your stay at Kings hospital will be over soon. Best wishes that your new pain relief device does the trick, and at last gives you relief from your pain.

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Re: Update on me (Lemongrove)

Really sorry to hear about your rubbishy few months. I always look out for your posts so am glad you've updated us. It's worrying when people go quiet on here .......


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Re: Update on me (Lemongrove)

Lemongrove, so sorry hear what a tough time you've been having. Fingers crossed that the new chemo combination does the trick and keeps things in check, but that, if not, the rads work as well for you as the cyber knife did for you on the skull. Will be thinking about you, all best MG xx

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Re: Update on me (Lemongrove)

Just chipping in with my regrets that you've had such a rough time--as though BC and mets weren't bad enough without poor treatment--and my best wishes for the future.

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Re: Update on me (Lemongrove)

Lemongrove - so sorry to hear you have been having such a hard time but so pleased that have are under medics you trust and making progress. Like the other posters I feel that winter has dragged on long enough (is it me or has it been greyer than usual?) really need spring!
dawnhc - sorry you are in hospital (nothing too drastic I hope) all the best from me
blondie
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Re: Update on me (Lemongrove)

Gosh what a time you have had. It is quite shocking that your original hospital just drained your seroma for 3 years - surely having problems for that long should suggest something else is up.
I hope you new drug combo has things under control soon and the side-effects are minimal.
Sue

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Re: Update on me (Lemongrove)

Hi thinking of you take care , rest and hope things improve
Sarah66 x

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Re: Update on me (Lemongrove)

Hi Lesley
Good to see you are back posting on the forum but what a rotten time you've had. Hope the surgery is healing and wishing you all the best with the next planned treatment. Keep posting!
Nicky x

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Re: Update on me (Lemongrove)

Hi Lemongrove,
Sorry to hear of the bad times you have had recently and all the best for some real improvement.
I post on the forum very infrequently - my OH has secondary breast cancer -and I have always found that your posts have been informative and full of a fighting spirit that is invaluable to all breast cancer sufferers. I was wondering what was happening with you, as I had not seen any posts recently, until now.
Just wishing you all the best with your fight against the BC beast.

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Re: Update on me (Lemongrove)

Lesley I am just catching up on posts from my hospital room at Kings College and am shocked to read what you have been trhough these past few weeks. It is indeed, as you say, a cruel disease attacking us without warning or notice! Glad to hear you have been put onto a good chemo regime and pray that this combined with the stereotactic treatment will bring you some stability in your life and time to enjoy the grandchild/

Dawn
xx

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Re: Update on me (Lemongrove)

Welcome back Lemongrove. Sorry to hear about the hard time you've had recently and the discovery of brain mets but glad to hear that you are on the road to recovery and that you have much confidence in your oncology team. Such an important factor when we are faced with ever changing treatment decisions in this ongoing battle. Sending you my good wishes and cyber (( hugs)).
Liz x

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Re: Update on me (Lemongrove)

Dear Lemongrove
i have followed your posts for many months (years). Hmm what a fecking iatrogenic epsiode you've been having. I'm so pleased you're still with us and still fighting (not that I personally like the fighting metaphor - I prefer to think that we 'am', what we 'am'). I am very seroma-prone like you. Your post has made me think that I shouldn't indulge in the sort of cheery exchange I have with the surgeon at the moment of 'betting' how many mls the next aspiration is going to be - it was 480mls last week, after 400 the week before. Next week I shall ask him what the bluddly hell is he goin to do about it.
Truly, I am rootin for you sister,
maggyxx

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Re: Update on me (Lemongrove)

It's good to see you back Lemongrove. I'm sorry to hear about what you've been through recently but glad that your team at Charing Cross are doing a good job and that you're feeling better. All the best with the Capecitabine and Lapatanib combination - hope it means you can keep rads in reserve for a long time.

Tournesol x
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Re: Update on me (Lemongrove)

Ponsmuir (Susan), I have just read your post - how wonderful to hear from you, and what a small world. You did so much to keep my spirits up when we were both in 6 South ward at Charing Cross over Christmas, and I have been thinking about you. I had no idea that you phoned recently (just mentioned it to John, and he said oh yes - sorry I forgot). I will send you a pm with my email address, and perhaps if our appointments converge, we can meet up for a coffee at Charing Cross. Hope you are doing well. You're in great hands.

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Re: Update on me (Lemongrove)

Broomsticklady, you're right. The Princess Royal in Haywards Heath did my MX almost three and a half years ago, and I have had a seroma ever since. My feeling is that the PR should have referred me for plastics when it became apparent that the seroma wasn't resolving, but instead they carried on aspirating. I do feel let down by them, but then the reason I transferred my Oncology treatment to Charing Cross in the first place was that I had no confidence in the PR ( I always felt - rightly or wrongly - that being a patient with secondaries, I was regarded as a waste of limited resources). That may be grossly unfair, and others may have had a completely different eperience, but that's how I feel. Anyway, it doesn't matter now, because Charing Cross have sorted everything out, and I never have to go back to the PR.

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Re: Update on me (Lemongrove)

What an awful time you have had,you certainly deserve a break from this crappy disease.Sending you my best wishes and cyber hugs,love and best wishes,
Di.x

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Re: Update on me (Lemongrove)

No wonder you have been quiet!! Keep battling on as you normally do and hopefully things will take a big turn for the better. Good to know that you are under a great oncology team x
Suzanne x

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Re: Update on me (Lemongrove)

Thanks for the update on your treatment Lesley. You have been through the mill. I have had 18 months of relentless treatments operations and scans and blood transfusions etc and I could do with some good news for a change. So glad that you are back posting.Hope your health continues to improve. A hug from Val.

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Re: Update on me (Lemongrove)

Good to see you posting again - you were missed. Not so good abouth the brain mets but if Cyberknife does them like it did your skull you'll be a very happy lady I'm sure. It's a bit frustrating that the seroma had to get so bad before it got a proper fix - they've been B'ing about with that for as long as I can remember. But at least its hopefully behind you now.

Nina

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Re: Update on me (Lemongrove)

hello Lemongrove, glad to see you back. Have not been on here much myself till recently.Sorry to hear of the seroma issue and also the brain mets, but glad that you have had such good care and that you are in good spirits. Hope all goes well with the chemo. Love and hugs, xxx

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Re: Update on me (Lemongrove)

Great to see you posting again Lesley. Sorry to hear you've had such a tough time. Glad to hear you are feeling better. Very best wishes for your treatment. Della x

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Re: Update on me (Lemongrove)

Huge Welcome back Lesley ,We have ALL missed you! , like carrie says , you are a real inspiration to so many on here with your posts and knowledge , youve realy had an awfull time of things of late, but you are a fighter pet and fighting is what you do best so keep on sticking those 2 fingers up to this horrible vile desease. We are all behind you lesley and wishing you all the very best.
Love and hugs to you, Linda x
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Re: Update on me (Lemongrove)

We were in Charing Cross together over Christmas/new Year and I so admired your courage and 'can do' attitude. It was good to catch up on your latest (I phoned John last week and he told me you were out, sorting things as usual. Typical!) I agree, you are in excellent hands at this hospital. I am dismayed that the A and E is under threat of closure as it was through that Department I was admitted.
Thanks for your good advice. As you can see, I have joined this Forum and feel supported by the many members who contribute. For some people like me, secondary breast cancer is a total shock and a steep learning curve. To hear that others are bashing on, making the most of their lives and sharing experiences is a wonderful thing.
i hope the better weather will help you get stronger and keep the updates coming.
x Susan
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Re: Update on me (Lemongrove)

I'm so sorry to read your news Lemongrove but I hope you will get some great results from the Lap/Cap combo and not need the stereotactic rads. And some stable, peaceful times are just around the corner for you. Take Care, Good Luck, Belinda..x
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Re: Update on me (Lemongrove)

Goodness Lemongrove what a terrible time you have had. The Charing Cross do sound like they are on top of things though so hopefully you will see some improvement.. Hope you can get plenty of rest and heal and enjoy the start of spring when it eventually arrives.
best wishes
Caroline

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Re: Update on me (Lemongrove)

((hugs)). Glad you are feeling so much better now. Pamx

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Re: Update on me (Lemongrove)

Hi you certainly have been through a tough time, I hope now spring might have finally sprung you will start to feel much better and mend. You are a real inspiration to so many in here with your posts and knowledge x

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Re: Update on me (Lemongrove)

Posting as this thread won't appear in latest posts otherwise. So while I'm at it, love and best wishes to all of those with secondary BC

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Update on me (Lemongrove)

I understand a few people have enquired about me, so thought I would post to avoid repeating things.
Just before Christmas, the seroma that I have had for the last three years since my MX, became infected after yet another aspiration at the Princess Royal. Anyway, amazingly they sent an ambulance from Sevenoaks in Kent, all the way out to Sussex, which then took me up to Charing Cross Hospital. Unfortunately once in hospital the infected seroma ruptured, leaving an enormous puss filled hole in my chest, and because all the tissue had dissolved they told me it would never heal on it's own, and that plastic surgery was the only option.

In addition to this, because I had passed out at home, they did an MRI of my head, and discovered that I have 5 brain mets - so repair of the seroma became an emergency, because it's not possible to have chemo if you have an open wound. Consequently, having gone in with an infected seroma, I suddenly found I had serious progression and required emergency surgery (so off I went to theatre, where they performed a trans flap op (muscle from the back was posted into the hole).
Unfortunately, when I went to theatre, the anaesthetist couldn't find a vein, so had to put the anaesthetic through my portacath. That was fine, accept that it seemed to then block my port, and which necessitated another op to replace the port. The problem then was that as they couldn't find a vein to put a general anaesthetic in, and my port was faulty, I had to have the replacement done by local. Thankfully I was so drugged up and delirious from the infection, I wasn't really too aware of things.

Anyway, after 3 weeks in hospital with continuous IV antibiotics, 2 operations, and 5 blood transfusions, I'm home and feeling fine (thank you Charing Cross you're fantastic). My wonderful Prof, has now got funding approval for Lapatanib for the brain mets (as it's one of the few drugs that can cross the blood brain barrier), and I've been on this with Capecitabine for four weeks now. They are also doing MRI's every few weeks to check what's happening with the brain mets, and if the Lap/Cap combo hasn't stabilised things, or shrunk them, they are going to do stereotactic rads. Initially they were going to do whole brain RT, because they thought it was in the dura as well (membrane), biut it isn't, so stereotactic is the way to go, because it spares healthy tissue and so can be given at a potentially curative dose. I hope I can now have a break from all this. Better still, I hope God see's fit to heal me and all of those who are suffering from this cruel disease.