Shadow in chest is recurrence
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Good morning Liz,
Just PM you.
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Here I go again.
You can just imagine working with me...yes I put in some long hours before all this.
It is important to know things.
It is equally important to have some cancer thinking free time.
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You have been so helpful. Very knowledgeable information. I was diagnosed with a mass in my medialsteinum and neck. My surgeon told me My cancer was vanilla and should go celebrate. On Ibrance and lexitrole. I don't feel like celebrating
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Hello Alicia,
When you get a chance it might be helpful to pop in your information on the profile - making it public will help others with a similar diagnosis tell you about their journey.
May I ask are you in U.S. Or UK - I am trying to figure out if Palbociclib is available in the UK?
It's a powerful combo - you will see many women on the Ibrance thread doing well with it.
I would urge to read and consider joining - there are some very sassy and strong ladies posting good solid stuff there - you will find lost of support there
If it is a recent diagnosis - you will feel down for while - and lack of sleep and anxiety will compound these.
IMO best to treat sleep first, then anxiety then anything else that you can't shake and hangs around...
I think it should be a sign the size of the Grand Canyon in every breast clinic:
- get adequate sleep and rest/ control stress by whatever means you can (sometimes that means just walking away from a situation)
- daily exercise (The American cancer council guidelines are easy to google and posted on this site )
- anti-inflammatory diet (Dr Weil is time tested but a balanced diet with unprocessed grains and multicoloured fruit and vegetables is a start)
For a body to keep up with the punishment of cancer treatments over time it must be given lost of solid TLC!!
Take lots of care!!!:)
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don'tyou hate autocorrect - the spelling bee must have left my nest on that post but you get the drift of it.:)
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You are awesome I live in the US. Maryland. I need to wrap my mind around this. I thought I was cured. No sweat....I still run 3 miles everyday and will try eating healthier. This is different than the first time. But I will continue to fight and learn to love this new normal.
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I am on the Gold Coast Australia so we do not have Ibrance outside trials.
But with Ribociclib soon to be release I think price will drop and more women will have access to it.
If you are up for some light reading - joking it's awesome - Bestbird has a metastatic guide you can access free - just search her and follow the links - it is generously free arrives as a PDF in an email and very well put together - get a cup of tea and find a comfy chair..
Also the posts on the Ibrance thread from zarovka, Bestbird, Shetlandponey are particularly well researched and insightful.
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Good morning Liz,
We are All thinking of you!!
Ioana
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Liz, just wanted to send you a hug and some sympathy. Having rotten news and taking a drug that makes you feel off is a bad combination. I hope you're starting to feel a bit better, physically.
May I suggest that you not only make a list of questions for your consult but also record your appointment? Many phones have that function. I've found that it can make a world of difference to be able to go back and listen to the discussion afterwords. None of my doctors have objected, by the way.
Alicia, I'm thinking of you, too. I hope you'll get through the storm without losing power.
Take care of yourselves, both of you - and Ioana as well.
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Hi ladies
Thank you for staying with me right through this. I have just woken up and Richard is making me a cup of tea. He is working from home today and my appointment is not until 4.15pm.
I haven't been doing any exercise since being on the blood thinners other than moochingabout the house and one hour long walk on Sunday. Today I will visit my parents this morning and go for a walk with Richard this afternoon.
The timing of this appointment is awful. Ideally I wanted adjustment time before the kids walk through the door. The boys have practice exams this week for their GCSEs in June- am mindful of not adding to their stress.
The Rivaroxaban is getting a little easier. Main SE of blood thinners appears to be fatigue. I try not to think about bleeding which is common. Kinda have bigger fish to fry at the moment! I move onto a lower daily dose in 8 days time. Some DVT forum posts suggests that it gets easier after that. I am currently in the intense treatment phase- how I wish it was just this problem.
Thank you does not seem a sufficient response for your support at this time. But know this- you have really helped in terms of encouragement, Hope and vital information about treatments.
Liz x
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good morning Liz,
Sounds like you are exactly where you should be - surrounded by those who love you!
Ioana
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hello hopeful,
Thank you - very kind.
Yep wrapping up the rads sessions and running out of funny things to say to the tech who smile and say just relax...
I am half naked - with missing boob wrapped in a cling wrap - Mepitel - second skin extraordinaire from New Zealand - on a cold hard table with beeps and blips all around...and whose serving champagne and nibbles ???
I mean 'just relax..,'
Having said all that they are really very human and I believe good at their job.
I could easily rant on about other funny moments in the forest that makes up the medical system - and I do not wish to sound ungrateful - because I am not - I know my treatment is solid, and feel fortunate with my care.
But gosh people say some odd things when they are on cancer ground.
Wishing everyone well,
Ioana
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Liz, I hope you're in bed and sleeping by now but wanted to send some support your way. I'm sure this was a long and difficult day. As to the boys' exams, keep in mind that these are practice exams rather than the real thing - thank goodness! Still, I know that feeling that one's done poorly on a practice can sometimes destroy one's confidence and we do not want that! So I'm crossing my fingers for them, too.
I hope you had decent weather for your long walk today. Sometimes that's the best way to process these blows.
Ioana, how cool that you're using Mepitel. I would have loved to have had it available when I had RT - all the research on it sounded most encouraging. In the end, I couldn't obtain it but my skin did great anyway - I truly over-stressed about radiation. But the thing about RT is that it's so individual and variable - you never know (for sure) how you'll do or how you'll feel from one day to the next. It's something of the cancer experience in a nutshell, isn't it? When do you finish?
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Hi Hopeful,
Thank you for your post. So wonderful to know people are thinking of me. I'm in a lot of distress and have a GP appointment tomorrow to get some anxiety meds. It is the location of this thing- I think it's in an internal mammary node and I'm so very scared, despite the docs saying lots of treatment options and " years" I'm in the dark at the moment and of course that is making it worse.
The boys did well today: English Literature, Chemistry and a maths paper.
Much love
Liz x
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Dear Liz - Hooray for your sons! I'm sure that gave all of you a lift. However, you are going through an extremely trying, distressful situation and bits of good news pierce but don't remove that heavy veil of fear, uncertainty and anxiety. I think anti-anxiety medications are almost a necessity in your predicament and wish you'd had them sooner. It doesn't sound as though you got much solid information from your appt. yesterday, which is really disappointing. It probably would have helped both you and your husband. I think that once you know what the actual facts are you'll be in better shape but you're dealing with a lot of uncertainty and a rather unusual situation and that's very draining. All I can say is that, until you know what the findings mean, you have too many scenarios for your mind to process. Thus, you can't make any headway in sorting things out and getting on with grappling with the issues. (Do cling to the good news and milk it for all it's worth.)
It's a horrible place to be stuck and I do hope you'll be able to move through it and on to the next step soon. In the meantime, I'm sending support. I wish I could do more.
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Hopeful,
Yep all wrapped up - I will let you know how it turns out - apparently the two weeks after you finish are the worst. So far so good - I have no expectations and I am managing - two weeks to go:)
Liz,
I think of anti-anxiety medication in acute settings as a brain filter - the thing you use to quiet down the unnecessary waves so you can think straight. Like all tools powerful when used with skill.
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Hi Hopeful
I am just waking up after an average night sleep. I did wake at 4am and check in with Ioana! All these miles between us and yet the support brings us closer.
My children do provide a welcome distraction from all this. Apart from that, I am needed. On my walk yesterday my son Jack was texting me over his lunch break. The English exam was at 1pm so he was bombarding me with questions about Macbeth and a Keats poem. Escaping into Literature removes me from the everyday, albeit briefly. My boss sent me a lovely text with some reading suggestions. He doesn't know the full extent of this yet.
I hope today brings not only what this is but some hope to treat it quickly, I am feeling some intermittent pain in the area and that worries me. I do hope they will act quickly. The system here is that all cases of newly diagnosed patients are discussed every Wed morning between 10-12. If my results don't show up till 2pm ( same time as my appointment) then I will only have the breast consultant's opinion, not the whole team.
Anyway I will keep posting and an ending warm wishes to you.
Liz x
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jackboo, I remember helping my son with research for his high school papers. It helps keeping your mind thinking about things other than cancer. I read twice you were dreading chemo and hair loss. If I have do chemo in the future I am going to cold cap to save my hair. I do not want to look or feel sick.
Did you find out it the recurrence is in the chest wall? I think that is still local and treatable.
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Hi Meow
Good to hear from you. I find out my results today hopefully, pending a further delay. There is a 29mm shadow in my chest. An A&E doctor did a recent X-ray and I heard her say inter mammary node. I have found a 2010 article about a woman who had it removed. So far though my breast consultant has said- stage 4, highly likely to be inoperable. I had rads in 2011 so that may not be an option, hence my keeness to explore surgery. All this is conjecture of course. I am pessimistic, tend to look at the worst case scenario and I have some throbbing pain now. I hope to report back better news.
In the meantime keep the exam revision questions coming Jack- your mum needs other things to think about!
Best wishes
Liz x
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Oh and I may reconsider cold cap. My feeling is that I dont want the extra fuss and I have no idea if it actually works, last time I completely dismissed it but may be more open to it this time.
I am a teacher and may have to return to the classroom wearing a wig. Saving my hair in that sense sounds appealing.
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Hi Liz,
That would be unlikely...
The histopath slides should be through by now, particularly if you had an appointment postponed.
Still anything is possible and does happen - let's pray that common sense prevails and that all new patients for the previous week get discussed.
I think by the end of the day much will be sorted - not all, but a good chunk of it.
(One more thing - metastasis is used by many to imply stage 4 - in fact it is spread outside the initial organ (breast) by lymph or blood.
So if you are stage 2/3 but have axillary lymph node/supraclavicular or internal mammary involvement - the nodes will be reported as having metastatic disease.)
Good to hear you are spending time with the boys.
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Hi everyone,
Diagnosed this aft. I meet with oncologist next Thur. Getting second opinion on surgery route.
er positive. Not conclusive for Her 2 but they presume it is.
Lost
Liz x
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Hi Liz,
I'm so sorry that the mets have been confirmed. I had hoped that they were wrong for your sake. This is a very tough time for you but I think you are doing all you can by exploring your options. Once you see your oncologist you will know more. Unfortunately, the waiting is the worst part of this whole thing.
Please know that I am thinking of you and hope you have a clear plan of attack soon.
Pat
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Dear Liz,
I am sorry to hear your news.
Spend time with those who love you this week/end.
Here we are all thinking of you,
Ioana
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Hi Liz,
Thinking of you!:)
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Hi Ioana
Ah thank you. I have just been discussing a clinical trial for Ibrance with another lady on here. Not sure if I'll qualify or not- my biopsy being inconclusive and my premenopausal status could be barriers to treatment,
I'm hoping to be offered hormonal treatment at first because if it's chemo, won't that be exhausting options too early?
Also been reading about s thermostatic procedure that targets the tumour and sets off an immunological response. Have also now received Bestbirds guide!
Have you finished rads now?
Liz
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Liz- Holding you in the light.
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Falconer,
Thank you...
I am waiting a treatment plan and tonight feeling despondent. I don't know what to expect, we all don't know to expect. This is such an individual disease.
I have read so my inspiring posts but also all the stories of progression. I feel like I am about to start on a hideous journey of illness.
Sorry- dark times
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Hi Liz,
If you are looking into hyperthermia - might be worth trying to PM zarovka.
I seem to remember she posted on it - VERY eloquent.
(Whether it's chemo type or antihormonals pivots on what they will think this is MOST responsive to. Chemo at stage 4 has to have thrown in it "long term good prognosis ..." minimise cancer burden or progression not responding - which you do not have.
To my mind it rests with the histopath...
I would be very interested in what the oncology opinion is)
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Ohh the rads - no - 9 to go...
But the Wesley machine playing up - I have ended up back on the Coast - long story about second opinions (how two elderly esteemed colleagues can have different opinions on the same data baffles me no end but it is what it is - and this one I wasn't even seeking it came for free as part of a different conversation) took me to Brisbane - so less travel.
All good:)
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