Shadow in chest is recurrence
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hi Liz,
I hope this w/end is gentle on you...
Di ?
How did your appointment with your orthopod go?
😊
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Hi Liz, my follow up appointments went well. I got my stitches out and ball and chain removed (breast drain). Dr's said they can't believe how well I'm doing and adapting to one arm. My oncologist upped my gabepentine to 600mg 3x's a day for the phantom pain, still wants me on the oxycodone but will gradually cut down over several weeks and added tramadol. Dr said phantom pain is tricky to treat. He is hoping the pain gradually decreases over the next few months.
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DiV, I'm glad you are getting lots of painkillers. I believe the current thinking is to not skimp on these at the beginning, because you don't want to train those pain pathways to make a habit of it.
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SheylandPony hi, today has been a bad day. My scapula has been killing me. It started yesterday waiting for my dr appointments. My first appointment was at 1:30 didn't get in to see dr til 2:00. Sitting without something against my back sets it off. My next appointment was supposed to be at 2 but cause of 1st appointment running late didn't get to 2nd appointment til 3. By the time i got done and got home it was 4:30. That's too long for me without back support. Today i finally napped from 7-9:30pm i now feel a little better. I usually am up and about at home for about an hour then relax with my back pillows for an hour. That up and down rest time keeps my back from hurting. Dr said it hurts cause right under sxa6is where they removed parts of the ribs and repaired with mesh. Dr said the up a little then down a little is what he would have recommended too.
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Hi Di,
I am sorry you had a rough day. It is bound to happen in the first months when you are forced out of your routine.
Gutsy orthop on the Gabapentin - good on him - you will need to give it a few days to kick in.
In principle once your chest drain is out you should have less pleural irritation, breathe a little easier and maybe even nap better.
Here is a little summary of it - Shetlandpony gets it spot on.
http://www.tannlegetidende.no/i/2016/1/d2e1410
I sent it to you not for the anti-inflammatory soup - but for the LAST paragraph - patients with gutsy courageous attitudes (for lack of better words) and solid social support do better - and now it appears we are starting to understand why ? at molecular level.
It is a soul over matter truth. 😊
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Liz,
Last night I was baking - its simplest thing but I am not sure this is quite the forum for a recipe, you most definitely did not keep me up.
Happy Prof thinks so too - 😊, it's important.
Hope that headache is better.
I can feel your anxiety towards chemo from down here - maybe a little simpler (NOT easier just simpler) once you start - you will be on this train and you have to do what you have to get through it.
You know about the hugs!
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Hi
Diane- I am late replying to you because I have had a bad headache and an intermittent weak leg and have been very tearful following a detailed breakdown of all the possible chemo SE. Despite this the meeting in York with new onco was positive. There is a cancer care centre and Dr Proctor was a very caring, thorough onco. We felt treated as individuals not patient B.
Sorry to hear you have had some hard days especially having done well in the preceding days. I know how hard that can be- the constant highs and lows. Wild and Shetland- great advice for many of us on here. Thank you.
Ioana- wish I could taste your baking. Off out now but will PM you.
Liz x
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hello Liz,
Will you start after Easter?
Diane - how are you travelling?
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Hi
Best guess is 2 weeks to start. Have asked for PET scan result and brain scan over telephone.
Have just called BC nurse to see if she can advise me about the leg.
Wondering whether any one on brain mets forum could advise me.
Diane thinking of you- hope to hear an update soon
Liz x
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Jackboo09 I'm doing ok. Trying to get the phantom pain under control. Dr said it would take a while to get better and to hang in there. Dr upped my gabepentine to 600mg he said to give it a week and if needed he can up it more. Last few days have been beautiful here for spring been in the mid 70's and sunny. Got outside some with my furbabies until I started to hurt. Showers help alot with tbe scapula pain and eases the phantom pain some too. I've been taking 3 showers a day usually when I cant takeit any more. I need a hot tub lol....otherwise i'm doing good and adapting well to my situation.
Hugs & Prayers to all!
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Diane
Controlling pain and getting the correct dose of medication is not an instant quick fix unfortunately- so wish it was for you.
I remember post treatment feeling frustrated that the recovery process was slow and then there is the added dimension of emotional impact. From the sounds of it you are coping incredibly well. Getting outside, enjoying your pets and then retreating back when you need to and keep having those showers if it helps.
I am in the waiting zone and having sciatica type symptoms. Fortunately the headaches have eased. Going to walk today in an attempt to keep moving.
If anyone has experience of sciatica/ and or back/ leg pain and weakness I would be grateful for any advice. I have a history. Today I have some back aches and stiffness rather than just the jelly leg so I'm happier that the back is exhibiting more like sciatica and the leg issues are hopefully arising from nerve impinging rather from a brain met.
Hugs and best wishes to all
Liz x
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Liz - Good morning from cloudy California. I looked for you ladies on the beach last night so we could share some Sauvignon Blanc and maybe a cracker. lol Please come anytime. I am wondering about your scans. What did the report say? Please know we are all rooting for you. I think an anxiety med might help too. Diane - you are so brave and strong. I need a hot tub too - one with a rail so my sometimes shaky legs won't slip. Got my scan yesterday, this Ibrance run may end soon for me per my onc - 17 rounds has been ok. We are looking at Afinator if anyone has any experience, please pm me.
(()) Claire
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Hi Claire
I thought California was always sunny! Ha! Here in UK we have just had our first decent sunny weekend of the year. It's hilarious because everyone rushes to have a BBQ and people get caught out by sunburn!
I'm still holding onto that glass of wine!
Finally got a chemo start date: Thur 28 Apr. Pet scan this week and a brain scan also ( no date yet)
What scan have you just had? I am due to start the THP regime.
Diane- we are all hoping you improve day by day. I have this image of you running in from a garden for lots of showers! How have you been today?
Liz
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JackBoo & DiV,
"If anyone has experience of sciatica/ and or back/ leg pain and weakness I would be grateful for any advice." ---no I have not BUT I would like to make sure you both are aware of the possible relief you might be able to get from a TENS machine. I recently have discovered this gadget and the included booklet mentioned sciatica among other things. I know some ppl have a lot of success, finding "pain relief" using TENS machine. I purchased one but not finding the magic, for whatever reason.
Around here, many years ago you'd need to see PT to get a TENS tx. Now there are "cheap" TENS machines for sale on amazon. Perhaps it's best to see a skilled PT to get lined out initially? I don't know. This is pretty much a "non drug" way to manage pain; uses electrical impulses. I think it's worth a shot. My MO said it's fine for me to use it. I'll keep trying from time to time to see if I can figure out a way to make it work for me.
HTH!!
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I don't have personal experience of sciatica, but both my sister and brother do. They now both swear by an inversion table.
HTH,
LisaAlissa
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hello Claire,
I am sorry you may be coming to the end of the Ibrance - there is much more I wish I could say/do.
Di,
Let us know how you are travelling - particularly on the days you don't want to - keep coming to us.
Liz,
Be extra kind to yourself this week 😊
Ok - between the California clouds and the sunny Doncaster...😉
A very gifted lady ( you might remember her she teaches English ) told me one night
" hope springs eternal my friend"
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ohh and there is a lady GmaFoley who posts on A peaceful retreat for contemplation - the most stunning photography - particularly of Oregon and bird life
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Hi Liz and Ioana - today I am tempting you with some gingerbread from my Danube Xmas cruise to Vienna a few months ago. I think it will pair well with a little rose or pinot noir. I have always liked chocolate with red wine too - flavour enhancement. I'm off on Good Friday and planning my Baltic cruise airfare since Regent screwed it up wanting me to fly LAX:MONTREAL:ZURICH:STOCKHOLM. lol They will now meet the lovely lawyer in myself and reroute me. Di - have a lovely Easter too. So glad we ladies are here to rally Liz. Waiting to hear more on your PET and brain scans. Rest easy gentle ladies and "walk in beauty" a la Lord Byron.
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Hi ladies
Just had CT brain scan and it was clear. Do relieved but exhausted. Will post on other threads and PM but utterly shattered.
Still have terrible headache. Waiting for antibiotics as sinus suspected. Hope this might give others some comfort.
PET scan tomorrow.
Love
Liz x
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Great news Liz!
Happy you got it done before the Easter w/end.
Hope the antibiotics kick in soon😊
Claire
I am from the Gold Coast - originally from Melbourne - moved up about three years ago for the lifestyle.
Brilliant photo - love it - love Vienna - what a clever idea to do a Danube cruise around Christmas - I will pm and ask about it!
And St Petersburg sounds divine- the Winter palace - I have never been but my ancestors come from a little town just above it😊
Diane,
I am a rather stubborn girl who keeps repeating herself ❤️- apparently not a sign of high intelligence - but who really cares...- so here it is again - if you get a break from the garden - how are you travelling??
Update on my rads skin - starting to brilliantly peel - good sign of healing underneath - hopefully I will have a decent shower soon ... I love water so for me...
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Liz - please keep us posted on your PET - it will show where any uptake is located, etc. Glad brain is clear, I just knew you would do well! Get some rest and post later. Ioana - I have been to Melbourne (home of 4 seasons in one day) and the Gold Coast - GC is much better! Hope you are faring well, albeit peeling. I am very excited to see the Hermitage+ Gold room, Faberge museum with the Romanov eggs and attending a private reception in Catherine's Palace. Will share pics. Reset my air travel to LAX:LONDON:STOCKHOLM. Very good flights now using miles for biz class. I wish I could see Liz in Heathrow, but will wave from my plane and toast everyone in the UK. (())
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Wildplaces hi, sorry i didn't respondto question aboyt traveling. I don't understand the question. If your talking about just everyday getting around my boyfriend takes me or my parents until i get car converted and learn to drive again. If you are referring to vacation in Florida in October we are flying. Great news on skin healing.
Liz so happy to hear that your scan came back clear . Great news. I'm in your pocket during petscan. Hope you get rid of headache soon and sinus problem.
Prayers and hugs to all!
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Diane,
No no no no....my fault.
English really is my third language - I meant "how are you?" ( "traveling" being the metaphor for how are your days going...). But I like a practical down to earth person who takes me literally.
You don't have to post a lot - but please come with us from time to time.
I do NOT know what you are going through but I have seen it from the end of the bed ( another metaphor - what is with me today... - meaning I have had patients with it). It's as tough as it gets, and those words are not enough.
Ioana
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Ioana, Claire, Diane
Hi ladies,
I have finally got some relief- physical and mental. Yesterday aft I cracked and got my second GP appointment of the day. Up to the hospital and CT brain scan ordered. Sitting waiting for that result was beyond scary because I was told they would have to admit me if it was mets.
The report came back clear and they didn't even give antibiotics- all stress related. Doesn't this just go to show how devastating this disease is on our minds. My head felt like it was in a vice!!
Got home 4 hours later, took a lorazepam and ate some Chinese food- not much and napped. Then bed and for once slept straight through! This has been a valuable lesson because I was convinced there was an issue.
Today is PET. 5.5 weeks on from last CT and so I expect it may have moved. I can feel a swelling on my left jaw but my outlook now will just have to be that the drugs are ready, the appointment is in place and it will be attacked. I still believe I am in a relatively good position despite the Stage 4. I recognise there could be more to report though.
So I'm off to get some breakfast before a 6 hour fast and trip to yet another hospital- St James' in Leeds. Then that is it- Easter weekend!
Ioana-,you are providing such great posts and support. You live in a beautiful place.
Claire- wow how exciting to travel. Pity you can't detour up to see me from Heathrow!
Diana- we will stay with you. Hang on in there. I will PM you when I have a bit more time.
Liz x
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Wishing everyone a Happy Easter week/end!
I baked bread - oddly enough the multigrain was spot on and the plain dough played out ...but it's home made and tasty and very tasty 😉.
I have a half cheese barrel round of English Stilton ( after two year of living in Paris it holds firm my favourite cheese - that and a piece of honestly made grain bread, and ....a the wine for me an old cab Sav but I have been tempted into an occasional port ) delivered and a soft Brie like version we make locally - King Island triple bay cheese - it comes in a long roll. The French make Vacheron which when in season is my preferred soft cheese but impossible to get out still....
We will have wine and a crazy Russain menu.
(Claire - Domaine A Cab Sav 2006 and maybe the Bellwether Cab Sav 🍷)
And yes we made red Easter Eggs!!!
Hope you are all close to your family!!!
Hugs to all aplenty
Ioana
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'Na zdorovie.' Cheers to your Russian Easter eggs, fine wine, cheese and homemade bread. Could you please just move Australia a little closer to us so we may share some of your bounty? Tomorrow I'm having a honey baked ham and Chateau Miraval rose (take that Angelina). Happy Easter and hoping for good scans Liz!
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and to you too Claire 😊 I will pm you on the languages
Hoping everyone has a peaceful week!!
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Hi ladies
How are you doing? I have been spending time with hubby, kids, although teenagers do their own thing, walking in the rain, eating chocolate and watching a drama DVD about Queen Victoria!
Hope you guys have had fun.
Back to patient land this week. Going to ask my onco about running hormone therapy concurrently with chemo as a joint attack. Need more info on this. He said it would happen post THP.
Dreading PET scan result despite positive CT 6 weeks ago. Err ...
Love to all, has Diane posted? Just jumped to end of this thread...
Liz x
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Hi Liz,
Apart from the confusion on my travelling question - I have not heard from Di.
Good to hear you are having family time 😊
There is no reason why the PET Scan should bring up any new info, the combo CT/bone scan is of generally of higher sensitivity/specificity so I believe you have every reason to breathe easy. Although a nice tool PET/CT scan can have false positives ( it will probably report on the lining of your endometrium and if you have sinusitis that will show up too). Rest - I think you will be right.
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Hi Ioana
Thanks for your reassuring post. I wI'll PM Diane.
Just because I have BC does not mean other things will not occur. This lymph node on jawline is raised, a bit painful and came up suddenly but I still think the dreadful headache was sinus AND anxiety.
So many on here with other symptoms that cause major anxiety.
Taking your advice and exercising every day and doing fun stuff.
Liz x
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