Gamma knife and Secondary Mets update

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Sorry girls for being very slack and not logging for a long time.

 

I am not an expert on this site and have just searched how to retrieve my posts and cannot so have started a new thread. Please fell fee to repost anywhere where you think this maybe useful.

 

Thought about this forum (and everyone on it tonight - paricularly Lemongrove for her sterling work) after I heard a sad story of a male friends, friends sister who is keeping the news of her cancer hidden. I asked whether it was because of losing a breast (my knee jerk reaction was to hide the news because of feeling unsexy - but had a successful lumpectomy and still a successful sex life) but he did not have more information. Told him to pass my number on for her to talk and also recommended this site, mentioning Lemongrove in particular and the great support it gives.

 

I have secondaries in bones, lung, liver and brain, diagnosed in Jan 2011 and still up and about. Gamma knife (as Lemongrove said now given on the basis of the volume of the mestases and not number) has done well in knocking off 30 tumours in my brain with no side effects from what I have experienced. There is just one they are keeping an eye that might have survived the original blast and maybe growing (15% can make a comeback apparently) but all the rest have been blasted once and either remained stable or shrunk. So it gets the thumbs up from me.

 

Lungs and bones are stable. Liver is being kept under control. Firstly by Herceptin after original EC/Taxol chemo - but I developed a tolerance after about 8 months. They transferred me back to chemo (Lapatinab and Xeloda) as soon as they spotted this and things have been under control ever since. So coming up to two years and still relatively fine - the only thing I really notice is tiredness that is increasing with the chemo (affects are cummulative) and joint aches and pain - especially with the onset of dampness  in winter. But after the painkillers have kicked in I am leading a pretty normal life except for having to have more days rest between nights out but then lots of friends have said - that is just getting old and they feel the same!

 

So considering I seem to have a measles form of cancer and am riddled with tumours I seem to be doind quite well.

 

Glad that you are still posting away Lemongrove - don’t know what we would do without you.

 

With lots of love and best wishes for a Happy Xmas to all

 

Jane 2013 x

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Jane, Just wanted to respond to your post which is very inspiring. I have mets to lungs (2011) bones ( 2012) and liver last month. I too am feeling relatively well and still do most things though like you get more tired. am due to start Taxotere beginning off Jan.

I am glad you are keeping well and wish you a lovely Christmas and all the very best for 2014. Sheila xx.

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Hi Jane, that is a really encouraging post.  It is amazing what is now available

by way of treatments and monitoring, isn’t it?  I wanted to pick up on your

description “a measles form of cancer” as it rang bells with me.  Multiple liver

mets (dx 2009) and bone mets (dx 2006), lungs clear, not had brain scan. I’ve

never dared ask how many tumours! As of last month, I’m stable on letrozole 2nd

time around, had 7 other treatments incl.Taxol which didn’t work for me, and

eribulin June-Oct 2013.  Had 2 years of Xeloda, hoping to go back on this someday

if letrozole fails.
Enough about me… I don’t know much about Gamma knife but it is great that it

can be used with many brain mets, and to give such hopeful results.  Let’s hope

that funding for Gamma knife continues (I’m assuming you’re a NHS patient).

Best wishes to you all, this time of year can be so special when we’re doing

relatively well… "with logs on the fire and gifts on the tree, A time to

rejoice in the good that we see"… ahh, good old Cliff, that gives a clue about

my age maybe!

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Jane I have just read you mets…Not really been in here a lot…can be a little scary:)

 

I have had left breast removed, due to inflammatory breast cancer…2012

… then found 2 brain mets after couple fits 5 months later… Would like to know more of the Gamma knife and what this actually does/helps??? If you can point me to any literature that I can read…

 

With Christmas just past…And enjoying every social event I could with family…IM now feeling whacked!!! and quite down…But I have always been positive right from the beginning…Upwards and onwards…NET into my Bubble…But that’s how I dealt with it…My Onc has treated me well and to be honest been here longer that I thought… I am now forever questioning aches and pains, is this the start of the downhill road…Sorry just down past couple days…Guess we all get there…and apologies to you other ladies…I try very hard not to be gloom and doom:))

Im 69 have 3 daughters and a son, all gorgeous…Supportive…I have a husband…who is really great…although he just isn’t accepting all of this…and 9 beautiful grandchildren…I have been so lucky in my life…

 

My very best wishes to all…for a happy healthier 2014…