Hi bahons
You are such a good friend to all of us with your wealth of knowledge and advise, just want to send my support and hugs.
Love Anne xxxxxx
Hi Bahons
Not on forum very much these days, but just read your post. So sorry to hear this news. Just wanted to let you know I’m thinking of you. Mind you I much prefer your lymphoedema posts to this one.
Sending a great big hug and take care xxx
Hi Bahons,
I’m not very good at doing the sympathy posts - I usually stick to the factual ones. But having read so many of your posts in the lymphoedema section, I wanted to say how sad I felt for you with your latest news. I hope your treatment works well for you.
xx
Hello Bahons
I am upset by your news and just don’t know what to say - except that your posts have always been a great help to me, you’ve always been very reassuring and easy to talk to. Last year when we talked about going through the taxotere journey and comparing notes… I am so very sorry that you now find yourself here. I had no idea and feel very guilty for that.
Long may you remain symptomless, and hopefully the new round of chemo and Avastin will have done a good job and virtually eradicated those anomalies.
Love P xx
Hi S
i was so sad to read this news… you have been so supportive of me with my ongoing vein and lymphoedema saga… and gave me the courage to tell my chemo nurses and docs no needles in my right arm… wish id spoken to you about it earlier.
i have no words of wisdom just wanted to let you know that im thinking of you and sending love and hugs through cyberspace.
much love Lulu xxx
Hi everyone
First of all, I’d like to say a big ‘thank you’ to everyone who has left a message…
Debsincornwall - thanks. I read your posts a lot, too! All the more so of late, understandably enough. And I used to live in Cornwall myself, once.
RhapsodyAngel - thanks for posting your message. I hope you never become a fully-fledged member of the the secondaries forum.
AlisonM - thanks. You’ve said exactly the right thing.
Jane - thanks. We’re having some great chats. I love your posts.
Elljaydee - thanks for adding your support. On a day-to-day basis it’s the lymphoedema that that’s the headache for me. Long may it stay that way.
Starfish - thanks for the message and I hope you never become a fully-fledged member of the the secondaries forum, either.
Jantharra - thanks for the message… and the cyber hug.
Lomalinda - thanks for posting - glad you like my posts.
Marilf - you’re so kind! I’m sure I’m more of ‘Lymphoedema Bore’, actually…
Kay123 - your ‘ramblings’ are very interesting - I’ll probably pm you shortly.
Belinda - thanks - I’m a big fan of your posts, and I do feel as tho’ I’ve landed amongst friends here.
LesleyP - thanks. Glad to hear you are doing well.
Hi Dotchas - thanks for your support. I read a lot of your posts, too.
Dawnhc - thanks. I think you do a wonderful job here - always there for everyone.
Naomifel - thanks to you, too. I have no idea who reads my posts; it’s interesting to hear from you.
Kindensurprise - thanks for the cyberhugs - hope you are soon feeling better, too.
Lily200 - Hi there and thanks, to you, too, old chemo buddy. Our paths haven’t crossed so much recently, but I do have a look at many of your comments.
TORONTO - Thanks for your good wishes. Hope you had a productive session a the L clinic! Interesting that you have cysts on your liver.
Aroma - glad to hear that you are coping well with the spots on your liver, long may it stay that way. Any luck with getting some help with your arm?
Bydand - more hugs, thanks!
Lynni - nice to hear from you. Yes, I’d rather be posting about the big L, too. (I’m sure I can fit a few more rants in soon…
RoadRunner - thanks for the non-factual post! Much appreciated.
Hi Peacock - my nearest forum neighbour, I think! Don’t feel guilty that you didn’t know - I’m not good about posting about myself and my problems.
Lulu34 - thanks for your message. I’m glad they are taking a bit more care of your arms now - and I’ve just been reading about your work and website on another thread - well done you.
Sounds like the Oscars, doesn’t it?
I’m in a funny old place…I was told just before I moved to France two years ago that I had mets and after an MRI scan over here shortly after I arrived I was told that I hadn’t - but that I had a cancerous lymph node in my chest wall, which was then removed.
(Incidentally I was also told in the UK that I had Wolff-Parkinson-White Syndrome; a heart condition that affects about 1:10,000 people, I think and when I got to France I was told that it was in fact ‘Kent’s Bundles’ - a less serious condition)
So I feel as tho’ I’ve been dancing on the edge of the volcano for a while, so to speak.
Well, I’d just like to reiterate my thanks to everyone who has left a message on this thread. Your kindness and support has moved me more than I can say. I feel truly amongst friends.
Take care all
X
S
Hello Bahons, So sorry to read your post and upset to hear your news. You have been so helpful to myself and other lymphoedema sufferers on here. I hope the treatment is successful and you remain well for a long time.
Love Lesley xx
Hello Bahons, I am in awe of all the letters of support that people have been sending to you. You have been such an obvious support to them with your lymphodema knowledge. Now it is your turn to accept our support. I am relatively new to this site but not new to the disease. I have been living with all this for 20years now and I have had bone mets for 10years. Will be starting chemo in a week or so again. So please accept our support and love and if we will be glad to lend a listening ear whenever you need it. LOL from Scottishlass
hi bahons ,hope your doing ok ,and coping with the diognosis,all a bit of a shock isnt it ,but you will cope and the chemo is doable .im ok just have niggles now and then ,my arm is still much the the same ,but ive now got a fantastic new nurse at the clinic who imediatley saw that sleeves i was wearing wernt the right ones and hadnt been doing my arm any good at all!! now im wearing some lovey comfortable ones with a grip top that do help ,my arm is still relatively swollen but not quite as painful asit was before . i wish you well ,take care .lynn x
Hi all
Loopyjack - thanks for your message - it means such a lot to me
Scottishlass - thank you for posting - 20 years with bc - it’s my turn to be awed…is that recurring primaries and then secondaries, or having you been sharing your life with mets for nearly a quarter of a century?
Aroma - thanks for posting. I am SO GLAD you have started to get some decent lymphoedema care!!! And that your arm is less painful, too. It must be so good for your morale.
X to you all
S
Hi Bahons, In reply to your post I have been living with bone mets since 1999. I had original BC in 1989 aged 39. I was treated with harsh chemo, mastectomy with reconstruction at same time using muscle from back and implant… I had 10 years clear. When I passed 5 years I hung out flag and when 10 years passed I celebrated again. However in 1999 I was having investigations done about recurring pain. Thought it might be related to my Irritable Bowel Syndrome or gallbladder or pancreas. All tests came back clear. However unknown to me there was something going on in my bloods and they were trying to find out source. So it came as a shock really to hear the BC had spread to my bones, in my spine, thorax, pelvis and ribs. So I have been undergoing treatment since 1999. It has been a hard and difficult road and I know there is no cure… However the pain in now under control. I am still receiving treatment and am just having a wee break from chemo as I needed dental work done but all being well I will re-start chemo next Monday. My bone-strengthening drugs have been postponed for 2 months to allow my mouth to heal properly.I have not been having chemo all this time. I have been on this current chemo since May. I had this same chemo about 2/3 years ago and it worked well for me. I have tumour markers in my blood and the chemo ( cappacitabine) does its job well. I have not lost my hair but it is definitely thinning. I have had side effects with this chemo including “foot and hand syndrome” but this time they reduced the amount of tablets I take and it is much better. When I was diagnosed in 1999 I thought the end was near…I knew NO-ONE with secondaries. On first diagnosis in 1989 there was a great deal of support about. This time I found myself alone in a boat in a wide ocean. I did get some support from the Maggie Centre in Edinburgh but never spoke to anyone who had mets. I remember the fear, despair and hoplessness of my life. HOWEVER, ten years on and I think absolutely different. I think I have a good quality of life now. I have given up work and so has my husband. I feel well. I don’t feel depair and am just happy to be here to enjoy my family and friends company. I don’t loose sleep and I am painfree most days. What I am trying to say is that I would never have believed I would feel better as time went on…I know things could change at anytime…but I try to take one day at a time. I usually go to France in May and September to visit my eldest daughter who lives in Bordeaux! Where are you living? I wish you well Bahons. It can be a hard road but we are there to try and help when we can. Much love Scottishlass…Val XX
Hey Bahrons - hope all is well with you
Love
Jane x
Hi scottishlass
Thank you very much for your interesting and informative post. I am very pleased that you are doing so well and long, long may it continue that way. Think I may come back with more questions later.
Jane - thank you for asking. Yes, I feel fine. Really well. Saw the onc two days ago and he thinks that the 9 x Taxol + 5 x Avastin that I’ve just had have shrunk the ‘anomalies’ (lol) a bit (not dramatically) and wants to restart/continue the same drug regime for the time being, starting tomorrow. Fine by me.
So that’s where I am at the moment, folks.
X to you all
S
Hi Bahons
Really hope it works for you and shrinks those anomalies, and the side effects are not too harsh for you.
Hugs
Kinden
xx
Hi,
well I am really glad to hear the treatment is working for you. Even a bit of a shrink sounds like everything is moving in the right direction and fingers crossed all these little shrinks will add up to a big shrink over the course.Good luck with the next lot
Everything crossed for you
Hugs
Lily x
Hi all
Just to let you know, that after 18 Taxol and (I think) 9 Avastin, a CT scan showed just a tiny smudge of where the tumours had been.
Am now having Faslodex injections in my (for once thankfully) ample behind to try to keep things that way for as long as possible.
Would love to hear from any other Faslodex pincushions out there.
Thanks again for all the support.
X
S
Bahrons thatsounds like really good news! A
Wishing you all the best as evr
Love
Jane x
Thank goodness someone is having some success. It’s been tough on these forums of late, but i am glad that you have for the moment and hopefully some time to come beaten the bugger.
Have a good xmas and take good care (sorry i’ve missed your post before)
Great news Bahons - really pleased for you. I’m not on Faslodex but as of January am going from monthly to three-monthly Zoladex injections - apparently it’s a massive needle (just won’t look!)
Hope you have a great Christmas
Lesley xx
Great news Bahons, I am so pleased for you!!!
What a wonderful Christmas present!
Take care,
Janx