Shadow in chest is recurrence
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@ wrecks our immune system and being on IV chemo is no picnic either. So glad I made it into the office last week - I have a business party tomorrow and working Friday and Saturday.
Much love to all our dinner party ladies, my birthday sip was a margarita! I had leftover spaghetti tonight. 0 -
Di,
As you know, 😊....Botox ( botulinum toxin type A) is used for phantom limb pain.
For a long time it was thought that most of the pain was due to nerve endings being cut, forming neuromas and connections that are not lost ( hence mirror exercises etc) but as you know it is poorly treated and it may be that the mechanism behind it is not entirely elucidated.
Current thinking considers muscle damage and muscle contractures as part of the syndrome. This is where the treatment with Botox, and its new so good people looking after you!! can help - there are cases in the literature reporting very good outcomes. You need a fair bit of Botox ( multiple tens of units ) hence the cost. It gets injected into the trigger points of the stump. It can be repeated.
I can post the links but if you google Botox phantom limb pain the studies come up.
Let us know the outcome of your insurance 😊🌷🐣
Love the deck - 😊 Di keep fighting!! Botox seems a good option in some really tough cases, I think the tumour being wrapped around the brachial plexus made the dissection tough, so the more complex the surgery the more likely tissues get a bit crushed ...You are amazing!!
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Claire,
I love Margaritas!!!
Many moons ago I was trekking the far north around Darwin with a rather interesting Frenchman. It was full of mosquitos, I got so bitten that I could barely walk in thongs - Kakadu - but I had my heart set on adventure and sleeping in tents. Well at the point where I was medicating my bites with high dose oral prednisone ( I know....) The dashing Frenchman choose to take us to a local motel for a night. Well " Missy here, yourstruly" kind of lost it - motel rooms up north are far from picturesque - 😱😨😨 it was altogether ruining my outback experience. He called room service ordered three Margaritas and a scotch - lined them up for me 😊🍸 and the "sixties pool" at the Crocodile motel soon seemed heaven to me.
Hope you get over the naughty bugger it flu soon!!
(()) 🌷
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Di, the deck is beautiful, you must be very proud of it.
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Hi guys
Had HPtreatment and not feeling good on it. Tight chest and a bit breathless. 😟
Supposed to be having a scan tomorrow. Don't know why I feel like this today after no issues previously?
X
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Liz,
Sorry to hear you are having issues. All of these treatments are cumulative so it's not unusual to start having some problems. Make sure you let your oncologist know if it starts to impact you significantly. Could also be a bit of stress over the scan. Our minds work against us sometimes.
Xeloda has been pretty good to me but I'm on day 13 of 14 days "on" and have been feeling light headed, a bit breathless and my muscles are tired. I definitely feel like a fish swimming against the current today. Will be interesting to see how my blood is doing as I am likely getting close to the nadir. Hopefully hemoglobin is holding up.
Try to take it easy. Sending all positive thoughts for tomorrow's scan.
Pat
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And... to carry on the earlier conversation... this is why I have tall fences. Neighbour took this picture of "someone" helping themselves to my greenery.
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Pat,
I'm about to turn out my night light and sleep, but wanted to thank you for holding my hand.
Sorry you are having some unpleasant SE. We have each other and thank goodness we do.
Nite x
Liz
P.S fabulous garden
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ok Pat,
We are coming for breakfast - I will bring the eggs - omelettes or pancakes everyone??
😊🌷
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Pat - when I lived in Coldwater Canyon up in LA, I had killer deer eat all my precious roses - mainly the tops! I threatened to make venison chili, but found out that buying a mylar balloon at Party City scared most of those cloven varmints away. Please try one - we work too hard on our gardens.
(()) Claire
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Pancakes please and yes try the balloon idea!
Just woken up. Seize the day and all that...
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Pat,
Pancakes sound great to me, maybe pumpkin pancakes?
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I'm game as long as nobody wants any herbs. Stupid deer also mowed down my chives. They are not supposed to like pungent plants but apparently they have more refined palates in Victoria.
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Di,
Botox is made classically by Alergan, but also by Zimmerman.
(They have reps in different areas that would be worth contacting if your insurance is not playing game or in any case just to set up dialogue.)
Zimmerman is a German based company, good product but less known then Alergan - they may be interested in supplying at a lower price per unit.
In Australia the price per unit for medical use - severe migraines at neurologist is considerably lower (about a sixth of) the cosmetic charge.
😊🌷🐣
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Yep if we can just work our way through the bush the view would be much better..
Ok, ok that's more like it - I like a room with a view.
Liz - are you back at school - let us know how your Pet turns out when you can.
Pat - how is your right sided pain - when do you see your RO?
Claire - (()) hope you are enjoying your work get away 🍸
Di ((()))
Sydney - lots of rain, Chinese food on the harbour, coffee and pizza at Manly, Madame Butterly at the Opera (except that being end season it was playing at the Capitol Theatre) (went to the wrong venue...taxied across at 1900 with a 1930 start, got there just in time for a glass of champagne) then next day at Taronga - I am not one for Zoos but it is quite a pretty spot.
😊🌷
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Who doesn't like a giraffe?
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Here's the Pacific Ocean in Santa Monica where I worked this weekend.
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Thanks for the photos everyone. The pictures of Taronga Park bring back fond memories. While I am not in favor of pulling animals from the wild to stock zoos, as a biologist I have found myself visiting zoos in every region of the world (zoos and natural history museums are required stops). Taronga had special meaning to me though. My father was there during the war (navy) and loved it. Somewhere in the house we have an ancient guide that he brought back. So, when I was in Sydney it was a definite must see. I seem to recall it was raining then too!
See a radiation onc today although I am not sure if she will discuss my sciatica issue. I was part of a clinical trial when originally diagnosed and this is the last follow up visit. Thursday I find out if my blood is holding up enough for round two of Madame X. Friday will receive the oral bone strengthener Clodronate from the Cancer Agency pharmacy. Hopefully few side effects from that one!
Wishing you all a good week.
Pat
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What wonderful photos and shared memories.
Pat- hoping your bloods are good to go.
Claire- stunning photo. Treasured views.
Ioana- great research on Botox for Di
Cive- shared love of giraffes, especially youngsters. I live very close to a wildlife park. There are rescued lions there from Romania. They had spent their lives on concrete and took a while to adjust to grass!
No news yet on Pet. Job good. Fatigue is better. Family driving me mad:feeling taken for granted.
Never done this before but considering disappearing to a spa hotel- just me and a book!
With love to you all,
Liz x
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Ooh Liz... You must! Do you want us to help you pick one? You deserve a little pampering. And don't forget some nice wine to go with the book!
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greetings dear Liz and co
With family in the land of Myanmar on the road to Mandalay
Calm wishes for your treatments xo Bright
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Hi All. The thread has been pretty quiet so I thought would provide an update. The next week is filled with appointments for me. Tomorrow the Cancer Agency GP and blood work to see if I am good to go for round two of Madame X. (Feeling a bit spacey so wondering if my blood is holding up. We'll see!) Friday I go to the Cancer Agency pharmacy presumably for the Xeloda and also for the bisphosphonate. Next Wednesday a CT scan in preparation for rads. Interestingly, I had forgotten that the Cancer Agency has CT scanners - it's odd that they don't use them for general diagnostics, only for radiation related treatments. Thursday is radiation. They're keeping me busy.
Hopefully the radiation won't cause any significant side effects. Apparently I may have some digestive issues due to the proximity to my bowels. (Oh joy.) I actually think the sciatica is a bit better, not gone but better. Maybe that's a sign that the Xeloda is working. Let's hope so.
Hope you are all well. It's a bitterly cold day in Victoria (well... cold for us, no snow but we're not used to it). Thinking of those of you in warmer climates!
Pat
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Hello All,
I know everyone is waiting on scans, tests and results of some kind...
((())) borrowed from Claire
😊🌷🐣
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Bright - thank you for the photo - your travels make me smile and teach me lots...
And I am still thinking of that eight egg sponge cake...
Liz - I certainly noticed the sticky pudding dinner 😊 and I know you are waiting for results.
Pat - you are thinking about the rads - I still read the Ibrance thread - hmmm - no idea.
Claire - beautiful beautiful beach
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Tomorrow will be one week since PET. Despite being assured of a phone call, have heard nothing tonight.
Liz
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No news is good news Liz! But understand the frustration. You may have to poke.
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hey Liz,
You are right to be grhhhh - it should take 2-3 days allowing for chaining of radiologist etc.
It looks like when it comes to imaging it's a slow department in terms of organization...
That escape sounded bliss - ahhh room service, spa and books 😊🍒on top
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Hi all! Weather is changing here. Expect 1st snow tomorrow. Not much but still snow. Not ready for the cold. Spent past week cleaning up yard. Did leaves again today. Did my neighbors yard also she bought a one way ticket to florida to spend time with her daughter. My mom gets her biopsy monday so walking on egg shells. I have access to her records and her blood levels are low. Her pescans results say spot on lung is not indicative of cancer but more infection. So i'll be with you ladies waiting on results.
Loana thank you so much for the botox info. I saved it and will inquire if insurance doesn't cover it. Funny you should post giraffes. I live a mile from the Cleveland Zoo and we just welcomed a baby giraffe a few months ago.
Liz yes take some much needed pampering for yourself. You deserve it!
Pat hoping everything goes well on 2nd treatment of X. Also praying no side effects from X or radiation.
Lalady love the beach pic. No place in the world i'd rather be. I can totally forget everything walking the beach.
Bright 55 OMG that picture is gorgeous. Love that kind of architecture. Makes me think of Princesses and Prince's.
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Sooo... met with a different oncologist today. My MO must be away again - he did indicate the last time we met that someone else would see me but I thought it would be a GP or the NP as is often the case when you are in the middle of chemo. Appointment was fine. Of course we didn’t have the rapport that has built between my MO and I so it was a bit uncomfortable.
One issue that came up was the bisphosphanate which my regular onc has recommended. I don’t see how this medication is going to work for me quite frankly, particularly while I am on Xeloda. I need to take it on an empty stomach, one hour before eating. The onc indicated that really, the only time we have a truly empty stomach is in the morning. To me this seems like doing the glucose fast every day for the rest of my life. How stupid is this when I also have to take Xeloda on a full stomach at breakfast and dinner? Apparently the problem is that it has a very low absorption rate and with food it is essentially zero.
Alternative is an IV infusion once a month. I will speak to the pharmacist tomorrow but if they believe that the only time to take it is in the morning (i.e. two to three hours after eating will not be effective) then I will likely pass on it. I don’t need to deal with the side effects of a medication that is doing me little good. I choose the IV....
Almost the weekend for means it is a three day weekend here. My blood was great today so start Madame X again on Saturday. Then may do an imitation of a slug for a couple of days....
🙃
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Pat, glad to hear you are doing ok on madame X, at least blood work wise. Hopefully it's killing the little cancer bugs too!
Liz, waiting is the pits.
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