61
   

"YABBER-LINER" - ALL ABOARD

 
 
Barry The Mod
 
  2  
Reply Sun 5 Sep, 2010 10:51 am
OK,here's the runners.First of all the fast ones 'cause they've got a name,NOT a number....
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/037.jpg
Then the Club runners....
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/038.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/040.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/042.jpg

A bit of musical encouragement....
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/044.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/046.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/047.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/048.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/050.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/052.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/056.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/058.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/059.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/060.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/061.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/062.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/063.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/067.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/068.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/071.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/075.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/076.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/077.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/078.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/079.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/082.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/081.jpg
http://i1001.photobucket.com/albums/af138/barrythemod/Pink%20Run/083.jpg

Another memorable day.Thank you London.
0 Replies
 
JPB
 
  3  
Reply Sun 5 Sep, 2010 11:13 am
@Izzie,
Hugs, hun.

I tend to become extremely clinical in situations such as this. I don't do emotion when emotions gets in the way of the data, so apologies if I sound uncaring. It's not that... it's just that I tend to talk in terms of "just the facts, jack" when the clinical hat goes on.

The roller coaster of emotions that Charlie, and all of you, are going through are natural and normal. Let yourselves feel what you're feeling. There's no should or shouldn't, right or wrong, best way to react to any of this. But there is data. Lots of it. Enough of it that she'll feel bombarded by everything that's out there.

I've recently been helping a friend - a friend who has lurked on this thread since the beginning and thought of joining us during your Chicago stay last summer - sort through all of the available data on the latest research and standards of care. I can forward you as much or as little of the actual research as you want, but here goes...



Charlie - you'll be given a report that should include:

Stage
Grade
Size
morphology of the positive node (extracapsular invasion?)
ER
PR
HER-2
EGFR
Ki-67
Luminal A or B if ER positive
other possible markers and morphologies

Knowing upfront whether you're open to chemo before getting your pathology is asking a lot, imo, but you can make some advance decisions. Some subsets of the pathology point to an obvious yes to chemo whereas others are more marginal. There is simply way too much info to absorb on everything that's out there to cover all of the possibilities before having the results. OTOH, since this is your first mammo and there is no baseline to compare it to your docs will assume that it's a fairly fast growing tumor, particularly since there was already some spread to the surrounding nodes.

The real question isn't simply yes or no to chemo but, if yes, what type. I'm not familiar with standard of care for treating various stages/grades of BRCA in the UK. Your docs will recommend a course of treatment based on your pathology report. I don't have any idea how much leeway the medical system allows you to negotiate your treatment plan vs the recommended plan, but I can help you sort through the options if it comes down to choosing one particular treatment plan over another.

I'm so sorry you're facing this horrible surprise. BUT - early discovered breast cancers are cured more often than not these days and you have every reason to be hopeful for a cure.

Thinking of you, your family, and your loved ones.
wandeljw
 
  2  
Reply Sun 5 Sep, 2010 12:47 pm
@JPB,
Excellent information, JPB. Knowing specifics is important. Continued prayers for FlavourQueen and family.
Dutchy
 
  2  
Reply Sun 5 Sep, 2010 10:03 pm
@wandeljw,
Hi crew, whilst thinking about Charlie I came across this post just now http://able2know.org/topic/161008-1, just amazing when something is on your mind what pop's up out of the blue.

Quiet Fathersday yesterday but Mrs. B prepared a special evening meal and my son phoned whilst at sea harvesting the mighty Tuna.

Hope all is well with Charlie and Izzie, thinking about you. xxx

Great action photos Harbourmaster, you sure have a steady hand photographing them wobbly bits. Wink Smile
0 Replies
 
McTag
 
  2  
Reply Mon 6 Sep, 2010 01:17 am

Have now got the Cabin Boy's photos sorted, lots of stuff there.

I'm going off today for a week's fishing in Scotland, so keep a steady hand on the wheel till I get back. Lots of good stuff to look forward to then.
verbivore
 
  2  
Reply Mon 6 Sep, 2010 04:55 am
@McTag,
i thot i read n fb tht alls well now with charls...wats the stats now? guess i shud back..very low battery power..
hiya BEAgle..did bring a smile to see tht ur son remembered to call..i forgt to wish ma dad Sad
bazza..quite a gud collection u gt..am yet to post i knw..i gotto learn it frm scratch..posting here..il post in fb first tho..
stil waitng to hear th final word frm IBM..
praying for fq~~~~
Dutchy
 
  3  
Reply Mon 6 Sep, 2010 05:02 am
@verbivore,
Hi verbivore nice of you to drop in, hope you hear some good news from IBM soon, sending you some goodwill vibes.

Ofcourse we're all praying for FlavourQueen, should bring the right result from the Man above.

Good fishing McTag, a man after my own heart, Dutchy can tell you many a fishing tale from my many sorties with my fishing son.
FlavourQueen
 
  7  
Reply Mon 6 Sep, 2010 10:53 am
@Dutchy,
Hello fellow sailors - thank you for steering the ship whilst Captain and I have been on shore dealing with a few medical issues - Back on Board and waiting for the Big Man to really start sailing us into the perfect seas.

YOU CANNOT POSSIBLY KNOW THE STRENGTH AND LOVE THAT YOU HAVE GIVEN ME!!

Honestly, I cannot believe how my questions are being answered by you guys, - JPB - THANK YOU (((((JPB)))
Barry - I LOVED the photos of the Hyde Park Run - am so sorry that my colleague did not answer your calls - You answered mine with the wonderful photos and inspiration - there really is so much good in the world.

I have a room full of flowers, cards and love - my kids are back at school and college today and I have the house to myself right now - there is a calm and peace and I have rested well.

Iz - You are the best sister in the workd - I LOVE YOU can never seem enough - Come on my journey and we will find true LIFE

Brooke (((()))) - I do not need to say anything - I feel you and the love and peace - Thank you and Thank God - One day we will truly meet and have a real HUG!

Dutchy, VBV Special Agent, Roberta, Dev, Ebeth - your thoughts and vibes and love and prayers are so valuable

love you xx
verbivore
 
  2  
Reply Tue 7 Sep, 2010 12:25 am
@FlavourQueen,
NOTHING can go wrong with all the prayers and poss vibes coming your way FQ....time for PINK PARTY (((((FQ))))
BEAgle..thnkuu..fingers crossed here too...
0 Replies
 
Dutchy
 
  2  
Reply Tue 7 Sep, 2010 04:55 am
@FlavourQueen,
Hi Charlie and sis Izzie, ship appears in calm waters and that is good, only verbivore came on deck but she was gone before I had a chance to offer her a piece of chocolate.
I suppose it is a frustrating time awaiting further details, so hope your wait will be rewarded with some positive news.
Hang in there Charlie you have a lot of loving support from around the world and at home. Hugs and lots of positive vibes from the Beagle downunder.
0 Replies
 
ehBeth
 
  2  
Reply Tue 7 Sep, 2010 07:58 am
@FlavourQueen,
There was pink worn throughout the weekend.

Surprising how much pink I can find in what I think of as a dull grey and black wardrobe.

Sending love from central Canada.
FlavourQueen
 
  4  
Reply Tue 7 Sep, 2010 09:12 am
@ehBeth,
Hey Beth
That is so true - my wardrobe is usually all black, but I have managed to find so much pink the last few days that I surprised myself.
Glad to see you keeping the theme going for me across the water!
Please keep the prayers going for tomorrow - I will be seeing my consultant tomorrow evening to get the pathology results - so JPB I will sure be coming back to you on that - I have spent the afternoon trying to track down the best UK oncologists - but it is a labyrinth I must say, as everyone sounds very well qualified> - I will just pray that I find the right one!
Miss Iz has a lot on her plate now - it is R boys 18th bday on Sunday and she knows he will not acknowledge her - Also S boy is going to have some medical tests which is worrying Iz sick right now, so she chooses to stay off the ship for the moment - What with having to cope with me as well - poor hunni - She will come to stay again this weekend so we have decided that we are going to do something a bit crazy rather than sit and feel sorry for ourselves.

Hope you guys are having a good day

Big Hugs
Charliexxxxxxx
JPB
 
  2  
Reply Tue 7 Sep, 2010 09:42 am
@FlavourQueen,
Lots of upheaval going on. Thoughts and prayers to all.

FQ -- try to get a quantitative Ki-67 score. Sometimes they just give you a qualitative result of low (<10), indeterminate (10-20), or high (>20). You really want the actual numeric score if you can get it, particularly if it's in the 10-20 range. Eleven and 18 are both indeterminate but make a big difference in ER positive groupings into Luminal A vs B.

Best wishes for your meeting. I hope you get the best possible news given the circumstances. Give Mz Izz an extra hug from me when she gets there.

Edit --- also ask about the possibility of having a microarray DNA profile. Sometimes those are restricted to clinical trials but it's the most definitive way of categorizing your tumor.
FlavourQueen
 
  2  
Reply Tue 7 Sep, 2010 10:30 am
@JPB,
Thanks JPB

I will certainly ask the questions - without a doubt - Could you explain the Ki 67 results and what they will indicate - also the Luminal A and B - this would really help me - I can look all this up, but I would rather have it in layman's terms so I can come back and ask questions should I need to. - I really hope you don't mind me asking.

Thanks JPB
Charliexxx

I will give Iz the biggest hugs from all of you when she gets here x
JPB
 
  2  
Reply Tue 7 Sep, 2010 11:28 am
@FlavourQueen,
sure.

Ki-67 is something that is present in high amounts when cells are dividing rapidly. The higher the level of Ki-67 the faster the cells are dividing. Low levels are better than high levels. Intermediate levels tend to cloud the decision-making tree which is why the actual number is helpful.

Luminal A and B are subgroups of EstrogenRestistant (ER) positive tumors. The prognosis for luminal A tumors is very good. More aggressive treatments are recommended for luminal Bs but getting classified correctly is sometimes difficult, which is where the microarray testing comes in. The actual Ki-67 score applies here as well with low scores pointing towards luminal A. So, if they don't (or won't) offer you a microarray assay you can use the Ki-67 result to get a better classification.
0 Replies
 
ehBeth
 
  2  
Reply Tue 7 Sep, 2010 08:10 pm
@FlavourQueen,
got my pink and white gingham jammie pants on with a giant white t-shirt

noticed a couple of co-workers with touches of pink on today - two stopped me to quietly tell me that they were wearing pink for my friend

http://everythingred.files.wordpress.com/2008/02/charlie1.jpg

sending pink and booby-blue night-time hugs through the night sky and across the water

I hope everyone is able to sleep well tonight.

<<<<<<<<<< rolling yabbery hugs >>>>>>>>>>>>


clickety click here
Izzie
 
  4  
Reply Wed 8 Sep, 2010 12:53 am
@ehBeth,
way, hey and up she rises...early in the morning Wink


Beautiful sunrise, off to work...

(((((((((((Crew))))))))))))


see ya later sis, i love you xxxxxxxxxxxxx
Dutchy
 
  2  
Reply Wed 8 Sep, 2010 01:15 am
@Izzie,
Morning Izzie, good to see you, don't work to hard. Smile How is S-boy?

Also a very good morning to FlavourQueen, hope all is well with you and family. Nice to read your post. Will keep up the prayers. (((Charlie)))

We finally have a new Federal Goverment headed by the first officially elected woman Prime Minister Julia Gillard. You Poms can be proud as she was born in Barry, Vale of Glamorgan, Wales.
Izzie
 
  3  
Reply Wed 8 Sep, 2010 01:19 pm
@Dutchy,
OK..... and BREATHE.... yes Boida, you too goil, thinking of you at Bellevue right now and hoping they have your asthma under control... ((((((BOIDA)))))))






SO... THE NEWS HERE IS GOOD from across the pond!

<Bethie, gonna need to do a shimmie soon>

Gonna try to be brief, but, ya know me Rolling Eyes

Charlie is 100% cancer free. The surgeon is VERY happy – the results came back that enough tissue has been removed and showed clear around the boundaries that no more surgery is required. PHEW. 12 nodes were taken (they just doubled Shocked ) – so, the first node was the only node that showed cancer cells and this was a trace amount – Grade 1, Stage 1... this was only detected because they did the blue treatment and the sentinel node biopsy – so, ordinarily, this would not have been picked up. THANKU THANKU BLUE Mr. Green

The wounds (which are quite large – all scars tell a story) have been healing BRILLIANTLY and they have taken off the dressings so it is a little more comfortable for her and she is moving her arm well. Surgeon was incredibly pleased with his work and the BOOB is looking good Razz

OK, the path results – well, that’s a tricky one still. The results show that Charlie is ER+ - the count is very high – 7 out of 8. Therefore the treatment will incorporate tamoxifen for a number of years along with a.n.other or both. (Don't know enough at the mo)

Now the thing that they could not tell her, and she won’t find out for another 2 weeks, is whether she is also HER+.

IF she is just (just!!!!!!!) ER+, it will be radiotherapy but with the option of chemo to ensure it’s kicked into touch and tamoxifen.

IF she is also HER+, the recommendation would be for chemo for deffo, then radio, herceptin for a year and not sure if that's in addition to tamoxifen. Confused

Another 2 weeks to wait for those results. The surgeons team will be having a meeting next week to discuss what they believe should be done and this will be notified to her. However, the meeting with the oncologist, in 2 weeks at a hospital closer to home, will be the chap/chapette who will give her the final pieces of information and the path/histology results.

Naturally, we are hoping for it to be ER+ with no HER+ - but, whatever the results, Charlie is in a good/better place in her head now and if chemo is needed, then chemo it will be. (Strange, as situations change, how we change our boundaries – who would ever have thought we would be wanting ER+ cancer... well, that’s better than HER+ cancer a?)

As we were talking on the phone as they were driving back from the hospital, a rainbow appeared... she loved that – a little bit of sun, a little bit of rain and look what appears... Who would have thought that cancer could have been a blessing? Never before has she felt/realised so much love, sincerity and generosity from people – and she has discovered a whole new perspective on life and the world around her.

Of course, we do understand at this time that she is no further forward re the treatment options – but she is so much further forward in her mindset and this is a huge step in the right positive direction which will carry her thru and over the hurdles she still has to overcome.

So – YAY for CANCER-FREE-CHIQUITITA – definitely no further surgery required, healing very well, and whatever happens in 2 weeks, she knows that she will beat this thing.

Cause for celebration methinks.

When you look at Bazza’s photos and all the messages and spirit those people who are walking/running have... well, it surely is an inspiration – thanku so much Bazza for going there and taking the pics – you really made a difference too.

Our friend Caralyn - she's up North a bit, another 20+years friend, is walking the New York marathon in November for Breast Cancer - she'll be wearing Charlie's name on her back... and even meeting up with someone from your <who could that be> Nation Wink She's on my facebook if you wanna see her progress or say hey...

I will be up with Charlie by early afternoon tomorrow (she's to see the GP in the morning) and will stay for a few days. I reckon there may be a G&T, ice and a non-surgical slice tomorrow evening. We are going out to lunch on Friday Very Happy







JPB – she asked all the questions re ki67 and ketones, epidermal wotsits etc... they hadn’t a clue what she was talking about Shocked <which we thought was a little weird> and they said that she was teaching them stuff. We figured that the oncologist will know more about the path/hist results – and, the surgeon, who has cut out the nasties, did his job very well – but she needs to wait for experts to talk “numbers and histology” with her. The only numbers she was given was ER+ 7 out 8 – ie – high on that one! She said that she will probably have more questions to ask you in the next couple weeks – and thanks you for all the info.

Charlie wanted to let y’all know what had happened and for all the support – she won’t be online tonight but she’ll be back soon to have a yabber.

I love you sis... see you tomoz Very Happy




<see, I don’t do no brief Razz>


((((Boida)))) – sending healing wishes your way goil. X



Ps. She hugged the surgeon twice – ha – that woulda been picture – <he don't do hugs>, the nurses were really laughing.


Shimmy time



Strength.


THINK PINK!!!!!!!!!!!!!!!!!!!!!!!!
Tai Chi
 
  2  
Reply Wed 8 Sep, 2010 01:31 pm
@Izzie,
Terrific. Love hearing good news from across the pond!
0 Replies
 
 

 
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