CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Oh, Iris...
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Iris: oh, unprintable! We'll be with you on the porch of the CT Inn, and in your pocket for all your tests....but you knew that.
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Iris ..I am shocked and so sorry to hear your news 🙁
Pepper ..Sorry to hear yours as well 🙁
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Scared, In your pocket for your CT tomorrow. Hope it shows that things are stable.
Pepper, Wow. It's odd when slow, lazy cancer is a good sign. Let us know what treatment plan you and your team develop.
Iris, In your pocket. I'm sorry. ((Hugs))
Gma, I'm glad your mammo is over. Hope your pain is subsiding. Gentle hugs. Love the group hug.
Cubbie, I understand what your doc is saying. My blood pressure is up every time I visit the doctor's lately, but more like 130/80. They write mine off to my stressful appointments. I hate having my arm squeezed by the pressure cuff.
I got a surprise of sorts in the mail yesterday. When I had my mammo, tomograph and failed stereotactic biopsy, I asked the radiologist to send me copies of his reports. Yesterday I received the requested reports with A HAND WRITTEN NOTE FROM THE RADIOLOGIST that further explained the medical speak in the reports, a few personal comments and so on. So surprised that he went through the effort to write the note.
I don't remember if I already posted about this (thanks chemobrain), but I talked to my boys about my scheduled excisional biopsy. I explained it as you all had suggested (just to make sure of what's there, I'm not too concerned and so on) and they seemed to handle it pretty well. Thanks, you are the best!
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Iris and pepper, so sorry to hear this. Big Hugs from CT's Official Hugger!
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Iris, that truly sucks--big hugs from all of us. Sort of a shock that what was first dx’ed as DCIS would metastasize w/o any clue over 9 years. Where in the abdomen are the mets? Hope they can be isolated and removed or zapped. Afinitor is a form of targeted therapy rather than chemo (and unlike Herceptin or Perjeta isn’t usually prescribed along with chemo). It and the exemestane (Aromasin) should "put the lid on the bubbling pot" and keep you going to spin class for quite awhile. (Interestingly, a "sister brand” of everolimus is used as an anti-rejection drug after organ transplant). Unlike chemotherapy, it identifies certain features unique to the cancer cells and keeps them from developing their own blood supply (angiogenesis) & rapidly dividing— and it spares your normal cells. But you will need to be careful about infection control.
Pepper, bummer that you have kidney cancer but thank goodness it’s not aggressive. Have they told you what’s next?
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thanks everyone, anyone here on the aromasin plus afinitor Combo? Seems the afinitor has some significant side effects
Saw on one of the boards that couple of folks actually took pill in a mouthful of marshmallows,that sounds gross but figure I will camouflage in some greek yougurt
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Iris and Pepper, so sorry to hear this news. Stinkin' ugly disease.
I hope that the treatments are kind and holds things at bay for a long, long time.
I dunno about putting pills in marshmallows--greek yogurt sounds like the way to go. Keep us posted!
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I will get screened next year but as of now, urulogist declared me NED for kidney.
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started back on the aromasin this morn
Have not the courage yet to do the afinitor, yeah my plan is to take with my yogurt and hoping to avoid the mouth sores
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Iris - so sorry to hear your news. Big hugs to you.
Pepper - NED is good! Sorry you have to deal with it.
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Just checked in after a day off the boards...So sorry to hear Iris! Hope the yogurt is a good way to get the pills down, and big hugs from me too!
XOXOX to all
Octogirl
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Iris - so sorry about your news...it sounds like your in good hands with your ONC...(((hugs))))..,.and glad you have a plan...and are already taking action....
Pepper - YAY on NED!!!
Cubby, Poppy and Octogirl - I can COMPLETELY relate to the fear of the Blood Pressure taking. I have such a phobia about it, myself, that I can't stand watching others get *their* BP taken. It makes me nervous just seeing it get done!!!
Thanks Everyone for being in my pocket today! I am a mess right now. Pretty much have been a mess of torturous anxiety for the past week. Last night was the worst...
Haven't had the CT - yet. But, will have in about an hour... My Onc acts like it's no big deal and most likely the nodule will still be the same. But, I feel like - then why am I having to do the CT?? The only answer I can think of is that there is a real possibility of the nodule being bigger or more nodules showing up....or some other incidental finding....I hate living like this.........
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Iris .. You have been on my mind constantly...I hope you are going O.K , and have no side effects from the medication (( hugs ))
Scared ..Thinking of you and hoping your scan goes well with great results .
Cubbie ..Yep ..I hate , hate having my blood pressure taken too ..If I spot a doctor a mile away it goes through the roof ..I take mine at home and it's fine ..
Pepper that is great news ..
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Had to share my sea of fog photo - someone told me it looked like a cream pie. This is what my view was from my front porch this morning. Thought it is a good time to remember to breathe...
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Scared, in your pocket! Prayers for finding no change or the nodule gone. (((((((((((((((Iris)))))))))))))))) Oh my gosh, from DCIS? How is this possible? My prayers continue to be with you hon. For helping prevent mouth sores which I am very prone to I take this daily sublingual vitamin B complex Vitamin B 12 with Folic Acid and B6. It is something my dentist recommended and I don't get mouth sores anymore except for the rare occasion I bite my own gums and they heal quick!
(((Pepper))) I am thankful it is slow growing and that you are NED. I am very sorry you had to lose a kidney. I hope your genetic testing does NOT come back with anything so you don't have to worry about your children.
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There’s actually a documented phenomenon known as “white coat hypertension:” just the anxiety of a health professional taking your BP (and fear of being scolded if it’s high) can make it soar, especially the systolic (top number). Me, I have “scale hypertension:” I make sure I get weighed first (and chided if I gained) before I get my BP taken. At my last MO visit, I did the BP first, and it was 145/66, when my systolic’s usually 115-130! Years ago, I participated in a biofeedback study—just thinking about my hands getting warm and relaxed brought my BP down!
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cubbie,the bp is what we call the white coat effect. Try sitting and taking ten deep breaths like you would in yoga before they take it. My husband has this issue and the breathing helps.
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scared67 I too had a nodule, discovered during rads, and my once told me that if they scanned everybody 90 percent would have nodules and the majority would be non cancer related. You can get them from having bronchitis, or pneumonia. Two years later and four ct. scans and there been no change bbc.co and my once said no more scans! I pray yours will be the same! The odds are in your favor!
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edited to correct auto correct lol
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Oh yes, I definitely have white coat syndrome but do find deep breathing helps bring it down.
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(((Iris))) I hope the yogurt helps. Does the magic mouthwash used with Adriamycin work with Afinitor?
Scared- I am also on the 3 month CT schedule. First was a 5 mm node in lung, then it was joined by a couple 3 mm nodes. I am still on watch and wait. These will be followed for 2.5 years. Nothing is large enough for biopsy or pet scan...so just waiting....
My scans, Prolia and mammo are coming up on the 7th. I will be meeting up with a Stage IV sister as she flies in for her monthly visit on that day. Makes it a little easier having a "girl's day." A mutual friend, a lymphoma survivor of 16 years, will be meeting us for lunch.
Molly - I am happy to see Wyatt was doing better!
Pepper - congrats on NED!
Octo -
Gma -
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Thanks Beachbaby and Robin....it helps to know I'm not alone in the lung nodule limbo...btw...Robin I love the little video of "Elaine"...huge Seinfeld fan!!!!
Ok - so - I just got an email from my ONC "CT scan looks good!" Whew....I can finally breathe! Thanks everyone for listening to me go crazy over this! :-)
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robin, i know they gave, me a fancy mouth wash but not sure if it is same as the one you are referring to, sort of think it IS.
Oh well, exiting Friday night did a load of wash, sock was caught in the door, water leaked all over the floor mess to clean up
My exciting life huh
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Scared, that is fantastic news!
Iris, that just shouldn't happen. odd.
Gma, beautiful photo. hope you are feeling better today.
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Thanks Poppy - A little better each day - it really inflamed the underarm scars but I am dealing.
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well fun, started the aromasin, yeap aches return and hard time getting to sleep, guess this is what it is. Tougher on this body this time as 9 years older
Have not started the afinitor as only have a xsample, apparently it will come from a specialty Pharr and they will call to set up delivery but gonna wait till I hear from them or at least Monday
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Iris, I am on exemestane. Are you taking any supplements? I do better taking vitamin D3, calcium, magnesium and zinc combination along with K2.
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molly, i do take calcium plus d, a b complex and a multi vitamin
One of them has zinc and magnesium
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