Shadow in chest is recurrence
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I am going to post on Vit D which I am sure you are all taking.
But look
https://clinicaltrials.gov/ct2/show/NCT02856503
Note that the recommended dose is 50,000 units weekly for a period of time peroperatively and looking at ViTD acting as targeted therapy (and I assume they are screened for renal disease - kidney stones would come to mind, hypercalcemia but that would be more common for calcitriol not ViD 3)
Anyway I was a little absent minded around my chemo time and downed a bottle ( or maybe two ) of 300.000 units yep - 10,000/ml thirty mls in the bottle - that brought my Vit d level in the 200s 267 to be precise. ( you can imagine Keith aka onc smirk) I have not had it tested for a few months but will again end October. It’s an old regimen - it was used in kids with rahitism in the late sixties together with a sea holiday and had good outcomes - granted growing bones.
Long and short of it - together with bone strengthening agents of your MO pleasure - denusomab seems to have it down here - Vit d 10,000 per day would more then reasonable.
I also take at an aspirin a day ( careful if prone to gastric ulcers choose a baby aspirin 100-150 - I think the US doses I have seen are 81 mg) (Celebrex blocks COX2, aspirin irreversibly blocks that whole pathway way above), Vit .C 2g/day high absorption form, turmeric, and a blood sugar stabilising agent - alpha lipoid acid by Thorne. There are lots of other immuno supportive Supp that might help - and a comprenhensive list at the bottom of a bestbird post on Exceptional survivors thread. I don't take metformin but it's on my list of things to prod my onc about. And it's a mixture from theothers but include some mushrooms, boswelia, ashwanda, green tea, resveratrol - this is more of a little from time to time.
Memorial Sloan K. Good first resource.
Rambling I know. 😊
(())
😊🌷
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I hate this fxxxxx disease.
Going to PM you all. Sunday night here. I'm going to bed early with a book, my cuddly jelly cat and my phone, so I can msg you all.
Liz x
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Just checking that I am receiving posts as thread has been quiet?
L
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Still here Liz. It’s been a busy week for me with work. Still processing from my last appointment.
How are you doing? Hopefully the cold is easing now.
Take care. Pat
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Hi Liz,
Hope you are ok! It's difficult to get yr head around this horrible disease. I too had a recurrence on the chest well following a lat dorsi procedure. I had surgery for same but was never given clearance due to, basically, the implant in the way! I had the implant removed but now have a grade 2 cancer in my pectoral muscle! Just started on aromasin and talk of chemo (tablet form) if it doesn't work!
I am so over all this worry. The Specialist mentioned surgery may be possible in the chest wall but a plastic surgeon wld need to be involved....hope you receive some other responses /information.
I am living in Australia now but originally from Glasgow, not too far from you!
Good luck - keep posting! X
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Hi Pat
I am fine thank you Pat. Thought of you every day. Just waiting for my check up with oncologist.
Love to you,
Liz x
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Hi Bonnie,
Great to hear from you and keep us posted on your treatment journey. We are a tight knit bunch on this thread and you will find we hold each other up whilst having virtual glasses of wine at the same time!
Love to all,
Liz x
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Hi Liz - I am back online after several days felled by flu and IV chemo. Today is my birthday - I will try a sip of something! Sending a hug to you, Ioana, Cive and sister Pat who has her hands full dealing with work and progression. Welcome Bonnie - hope aromasin works! I return to my office tomorrow. Hoping not to throw up. lol (())
Claire
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Happy birthday Claire! I hope you enjoy that sip or two! Sending gentle hugs. Pat
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Happy birthday Claire. Wish I was with you. Flu is rotten and knocks you back. My heavy cold was bad enough.
Another reason to celebrate guys- saw my oncologist yesterday and he told me that so I am being referred for the CORE trial. Need a PET first to determine if I am still oligometastic. Max number of lesions is 3.
I can't believe it. Really thought that ship had sailed.
Love to all,
Liz
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Fabulous news Liz. Any idea when?
Wishing everyone a lovely weekend. Definitely feel this is one of those thank god it’s Friday weekends. I’ll be glad for some quiet time.
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Happy Birthday Claire - I know that sip was a good one - hope you feel better soon!
Are you on regular antiemetics ?? Of course you are - ondansetron sublingual ? Dexamethasone?
ohh how I wish it was over a meal - will be champagne or a special Rose??
Pat - I will sit down and write a Ioana PM - but good to hear Xeloda is treating you well so far - and yes the scans are ok considering ....and please stop moving furniture if you can - best not to injure yourself - seriously though, it would be a not so good move!
I have fantasies about your rose fireplace screen.
I am thinking of taking up golf. Went to my first golf shop today and looked at sets - I am across the street from a golf course and have been for four years.
Hello Bonnie7 - I am in Australia too. I am exMelbourne now living on the Gold Coast. I can not see your journey as your history does not show up - but two things off the bat:
- for a surgical approach you would need a team thoracic/plastics opinion - the thoracic guys would take the tumour out if accessible and the plastics guys would reconstruct
- from memory - Zarovka posted she had pec muscle invasion - you can see her signature although not included in that - my impression from her posts was that she has good local control
Liz - well 😊🌷 you know I think it's great news - hugs aplenty - enjoy your time off.
November gets busy around here...
Hugs to one and All,
😊🌷🐣
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Bonnie - Zarovka just posted on the Bone mets thread and she noted that Ibrance/Letrozole got rid of her pec inv primary
Ibrance is not available in Australia under Medicare but it is under a trial - I think Leapfrog (Perth) has it under trial.
😊🌷
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Please don't be shy - PM and ask - both very helpful from their posts - it's the great thing about this Community - lots of info - it makes me smile - it's ultimately all about being women 🙄🍷
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Scan is Fri 3rd of Nov. I need this PET to be eligible. I presume I will have the treatment before Xmas.
Rest up Ioana. You sound like you've had a busy week.
L
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Shouts to Pat and Claire, let us know how the Zeloda treats you Pat and take a sip for me Claire. Contrats to you Liz on the chance to join a trial. Fingers crossed the PET is whatever you need.
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Ioana, you always make me laugh. Me move furniture?
They say a leopard never changes it's spots... It's really, really hard for me to remember that, perhaps, I can't be quite as self-sufficient as I have always been. It comes from not having a significant other in my life. If I don't do it... who will? But you will be pleased to know that I called on the neighbour and his friends to move the oak secretary bookcase. That one was beyond me... (I did try thought...)
Anxious to know what the sip was Claire. I'm starting to contemplate tonight's menu. Definitely something red...
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A smile for the weekend... A picture of Sadie trying to get me to play. How can I resist that?
And Ioana, one shot of my house in the back garden - this is why the antiques that are running amok!
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Brilliant spot Pat - gosh how I love roses!!
And Sadie - ahhh - beautiful.
It's a bit tropical down under but plenty of oak to move around, so Pat 😊 always welcome to drop in on us - I even have it on the terrace and it holds up well.
I made this for friends who came to lunch and though of Claire - it's yummy with a rose.
And then Liz - who asked for recipes a while back.
Liz,
It's the simplest recipe 1 egg, 1 tablespoon of sugar, 1/2 tablespoon of canola oil, 1 tablespoon of self raising flour, vanilla essence and fruit of choice (or cocoa and walnuts) multiply ratio by 4/6/8/12 as you need.
So six eggs six tablespoons and/or half tablespoons...
Beat sugar and egg yolk until creamy white, add oil and flour and fold. Beat egg whites sepately until stiff. Fold in and add fruit or nuts/cocoa.
Bake preheated 180 C for 30-40 minutes.
And it keeps ...packs well in lunch boxes. 😊🌷🐣
Ok I am going to have the mods after me...
LIz - you are never very far from my thoughts - absolutely chuffed atthis opportunity coming up.
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Ahh Pat - not sure, see.. I think you love it - 😉 The furniture moving...and I sort of get that.
I don't have a significant other because I ENJOY moving the furniture ( and fast please, and in tempo)
I don't always feel like that while doing it but deep down I know I am comfortable that way...enough to cope with the inconvenience of "travelling" alone. Sometimes I think WTHeck but mostly I think WOW.
Where is Di to ask me WHERE am I going? And she would be so right! No idea, making it up as I go along...
I am sooohhoping Claire will smile at this.
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Smiling and hungry!
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Pat- your house, roses and Sadie are adorable! Ioana- thank you for the recipe. I have strawberries in too!
Moving furniture- strangely therapeutic I think.
So today I have been on a very windy bike ride with Richard but it lessened the 'guilt' a little over a nice glass of Sauvignon blanc.
Jack did his shift at the shoe shop, came home and got ready to go to a Halloween party.
Lucy is with her 'boyfriend'- first one and she is reluctant to say much. However, his mum (Harvey) feeds her well and drives her home at night and so I am relatively happy. Haven't met the young man as yet but it is very early days.
Cameron has had a job interview and played tennis yesterday.
We are all going out for Sunday lunch tomorrow which I am looking forward to.
I am sleeping and eating well and despite major aches from the Letrozole, trying to exercise every day.
The news about the CORE trial was totally unexpected. I am pleased and terrified at the same time. My QOL is important and I am just getting my life back, but in no way will I turn my back on a possible treatment option. I will do whatever I need to.
I am enjoying being at home. Visiting family and planning to go to Chatsworth estate next week. Will send a photo.
I love you all dearly. Claire- did you enjoy your birthday? Cive- thanks for your good wishes.
Happy weekend to all. X
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Good for you Liz. A nice bike ride is the best way to justify a nice glass of SV. It was a glorious autumn day in Victoria today. Crispness in the air but I was in just a shirt while working in the garden, tidying things up a bit, cleaning the bird feeder and trying to adapt it to fend off a pair of determined jays who thought they had found easy street. They’re beautiful and fun to watch as they natter at you but I would need to mortgage my home to keep them in seed.
The flowers in the photo are actually rhododendrons as this is a photo from May or June. Here is a picture of a lovely but enthusiastic rose which I am trying to train over an arbor. As you may have guessed, I have a ridiculously large garden. I have little self-control when it comes to plants and so the garden kept growing literally and figuratively. Not much useful other than a few apple trees (Cox’s Orange Pippins primarily) and some runner beans but i find I lose myself when I am working out there so I love it.
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Lovely meal tonight. I made a beef stew and sticky toffee pudding for dessert. Diet next week!!
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Hi to all! Sorry I haven't posted lately alot going on. My mom has been having health issues. She had a pet scan on the 25th and scan revealed a spot on her lung. She will have a biopsy as soon as it's scheduled. Been busy getting stuff done here before winter. Last week was gorgeous so i stained my deck. Terry (boyfriend) took down my old privacy fence. Rented uhaul to take old fence to dump then to pick up new fence. While i was staining in between i helped Terry set poles for new fence. Started putting up new fence got 4 sections up then weather changed and it has been cold (with some sleet and snow flakes). Today I finished cleaning up rest of the yard. We went to winterize sprinkler system but something is wrong with it. Terry's friend does sprinkler systems so he will look at it this week.
Liz Great news on Core trial! I'm right there with you holding your hand for whatever you want for scan results. Congratulations on becoming an aunt! Thanks for PM'ing me. Your always in my thoughts.
Pat I'm so sorry to hear Anastrozole failed. Keep your head up lots of people are thriving on Xeloda. Please keep us posted on your treatment. Your in my prayers!
Wildplaces you made me laugh with comment "where are you going"..lol
Claire Happy Belated Birthday! Great news on Pleural issues clearing up. Great news also on brief return to office. Wishing you the best on upcoming Pet scan!
Bonnie hi! So sorry about recurrence. I had recurrence too to chest wall. Unfortunately my tumor wrapped around my brachial plexus due to that I had to have my arm amputated (not that this is anyway your circumstances) but just wanted to say i had chest wall reconstruction. If you have any questions PM me. I'm doing good except for soreness still in my chest and phantom pain from amputation. There is nothing I won't attempt to try to do. All of my Dr's are amazed at my abilities and strength to fight including me sometimes.
Going to end this now cuz it's getting way too long!
Love you all Diane
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Hi Di
Great to hear from you. I was very sorry to learn of your mother's health concerns. You must be very concerned at a time when you are still adjusting to your own post treatment life.
We are all here to support you and continue to be hugely impressed by your spirit. You have refused to let this thing beat you and shown incredible spirit.
I will reply to your PM tomorrow as I have my HP treatment. I am currently on a half term break from my teaching job. I have a stack of essays to mark and yet will lose a whole day tomorrow and an other on Fri when I have my PET scan.
Anything we can do to keep up that normality is a good thing in my book. Distraction is a powerful weapon- I find anyway.
Will talk some more on your operation issue. You have made the right decision I feel though. Take good care of yourself.....
Liz
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Dear Diane,
Good to hear from you.
I am sorry you are having to shoulder the burden of your Mum upcoming tests as you are trying to get on with things yourself.
My mother was diagnosed with breast cancer 9 months before me - she is fine - 2cm HR positive no nodes, on AI which knock her for 6 joint wise and because she requested a BMX with an axillary clearance on the cancer side ( she to is medical so no point trying to discuss the size of the surgery with her) has some residual pain, not lymphoedema, breast pain....So yes life, one day at a time ...😊🌷🐣
But good to see you get outside.
This my modest patch - of which I am super proud:
Now have a good laugh ...but I did prep the ground
(())
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Looks like a great patch. As I mentioned in either a post or PM, I don't grow anything useful beyond some apples and runner beans. Mind you, part of the reason is that it's darn difficult to get anything through to harvest. I did chuckle over the fencing, wondering what you were keeping out but then remembered the chooks. In my garden you have to think much taller. In addition to marauding jays (eating all the feed at the bird feeder) I contend with voracious deer, eating just about everything. (The fawns are the worst... adults tend to be more discriminating but the fawns will try anything once.) And then there are raccoons - cute but often aggressive. Oh.. and rats. Last year they ate all my tomatoes so I gave up.
Wonderful to hear from you Di. I'm also sorry to hear about the health concerns of you mother. I know how worrying it can be. My mom is 86. She's doing well but has had both knees replaced in the last year. It was definitely a challenge in April while I was also dealing with treatments and the never ending appointments.
Hugs. Pat
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Liz, Loana & Pat thank you all you the kind encouraging words. You ladies are amazing. No matter what is thrown at us we pick ourselves up and deal with it. To me it shows character. It shows a lot of what we have been through. It shows that obstacles are always going to come in life but it is how you bounce back from it. My battle scars from breast cancer is something that I see every day and have bounced back from. If I could just get rid of this phantom pain even for just a few months I'd jump for joy. My therapist mentioned Botox said that it would make my amputated arm straighten out. It feels like it's bent at the elbow and almost laying on belly. When I saw my oncologist friday he too mentioned Botox and said same thing. I told both my therapist and oncologist that when I see the surgeon in December that I was going to ask surgeon if when he took my arm if it was bent. They both laughed and i have to admit i laughed too. But honestly think about it maybe that's the last position my brain remembers. Back to Botox I plan on inquiring about it. I know oncologist said it depends if insurance covers it if not it is very expensive.
Attaching some pics. 1st pic is me on deck
shortly after surgery in march. Next 2 pics are after staining deck and starting new fence.
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Hi all wanted to share this. Sorry it wouldn't let me share link.
CLEVELAND, Ohio - About one in every eight women will develop breast cancer at some point in their lives.
Dr. Vincent Tuohy with the Lerner Research Institute at the Cleveland Clinic is working on a vaccine that could possibly make preventing breast cancer as easy as getting a shot.
Dr. Tuohy has been working on developing this breast cancer vaccine since 2002 by genetically modifying mice to get triple-negative breast cancer by the time they are ten months old. His research team vaccinates the mice at 2 months old and waits to see if the mice develop breast cancer by ten months.
"They didn't show any breast tumors (when they turned 10 months old)," he said. "We were very pleased with those results."
He got the promising results seven years ago, but says he received lots of push back and skepticism.
"It was a new idea, a little too new," he said. "A little too far out of the box."
But Dr. Tuohy kept going, attributing his tenacity with what he calls stubbornness, something he says he got from his parents.
His vaccine contains a special protein to prevent triple-negative breast cancer, which can be hereditary and is the deadliest form of breast cancer.
His unique take is to tackle the cancer defensively, instead of offensively.
"The way we deal with cancer, we wait for it to happen," said Tuohy. "Then, we beat the daylights out of it with surgery and chemotherapy and immunotherapy and hormone therapy and radiation therapy."
His passion and tenacity paid off. Just last month, the Department of Defense awarded him a $6 million grant to hold human clinical trials.
While Dr. Tuohy is overjoyed by the news, his journey is far from over.
"This is the first attempt that we have at preventing just one form of breast cancer," he said. "There are other forms of breast cancer that I think need to be prevented."
In addition, Tuohy is working on developing a vaccine for ovarian cancer.
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