For Older People with Sense
Comments
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Sorry to hear about your infection AmyJo.....3jays told me to stay out of the dirt that I could get psuedomonis that way....but do I listen , heck no....just love digging in the dirt, was out there tonight in fact. One of my friends called and wanted to know if I wrote the onco at MDA yet and I said no, I was out in the yard and she laughed. Anyway, I did get around to writing him and told him what is going on. He still says Xeloda and said he would be surprised if it does not work for me....said my onco must have had a bad experience with it. At this stage do I really care if I get hand foot syndrome?....I don't think I do....I just want the tumors in my liver to shrink. He said since I am on anticoagulants it would probably keep me out of any clinical trials, but he will see me any time I want to come back to TX. I am just going to tell Dr.Cody I want to do Xeloda. Oh, he also said he didn't think a biospy would make much difference and that he is sure my Her2- status would not change to +.
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hi gals... Marybe; i hope you can get Dr. Cody to listen, and if he doesn't ..well, another opinion, or MDA is in order, IMHO..
the visit to endo surgeon went kinda well today. they listened, which is what i really wanted..
they, however (there's 2!!gonna see me) decided since i do badly with surgeries, they wanna try to shrink it; so, back on the synthroid, and we'll see...
they wanted me back Sept. 23rd(sound familiar) BUT, Murs gonna try to work out 1 week later. I wanna go see Mecca!!! all this depends on wether the synthyroid works, or not...we'll have to wait, and see. so not what i wanted to hear..
interesting, though.. they are the premeir spec. in thyroids, and they've NEVER come across bc mets to thyroids.. they've practiced 30 yrs between them, so i think i'll be in good odds. gonna just go with it.
if their thinking is correct, they're going to stabalize me with the pills, and reck liver/kidneys/ TSH levels in sept. then, we'll see if it still needs to be done. they're thinking of radiation(pill) to kill mass 1st, then surgery as the last resort...
it sounds like a good plan, and you know, when a plan is in place, you ALWAYS feel better...thanks for all the love and support ladies, it really does help...3jays
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3jays, I can imagine the relief you feel just having a plan in place! I've been worried about you.
I am so jealous of all of you getting together in Sept but there's no plan now for a visit to the U.S. at that time so.....
Appts tomorrow with the BS and the PS - planning for my prophy mast and bilat DIEP is going ahead. It will probably be late fall.
Leah
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wow, Leah.. BIG plans a foot.. will be crossing my fingers for good drs. appt.. as long as you keep moving ahead..
thank you for your concern; you're right. im feeling much relieved, and hoping all works out, so i can make Sept.. it looks like the dodo birds heading off a cliff (no offense meant to my siters here) but, in spite of everyone's problems, we keep moving forward in a line, just trying to make it sept.
we'll plan for you, whenever you DO make the states!!for sure,, there's plenty of us out here, just ask Chrissy b.hahaha.3jays
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Leah, hoping all your appointments go well! Thinking of you!
Yay 3jays!!!! Sounds like you are on the march forward at last!!!!! That really is great news and hoping the pills get you feeling good and shrinks the thyroid back.
Things are moving forward, got my travel insurance approved today......cross another one off the list!!!
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Leah, I hope your appointments went well today. Let us know when you do get to the states and we will make a point of meeting.
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3jays, glad you're back on the Synthroid cause I know you were pissed having to go off it when you just got on it!! I hope it does what it's supposed to do.....
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3jays, glad you finally have a plan! Leah, did you say when you're having your mastectomy? Best wishes to you with your plan.
Not much of a day--most exciting event was that the car has no emergency brake. And we just came back from a long trip pulling a trailer! Gary doesn't think the e-brake was working on the whole trip! As is obvious, we made it back.
Love to all,
Dragon (lynda)
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Dragon that sounds kinda scary.
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Oh Lynda, glad you made it back but that's scary!
3jaysthis sounds like a good plan, and glad you're getting back on the synthroid. Surely you and Mur can work it out for a later appointment. You gotta go to Mecca!
Leah, hope all went well for you today.
Nancy, hope the broken toe isn't too painful and that you heal soon.
AmyJo, hope the antibiotics make short work of your infection. You've got places to go, girl, and almost time to welcome the new grandchild.
Marybe, I'm sure you'll be seeing Dr. Cody when he returns and hope you can make him listen to you. How did the cortisone shot work?
Nothing much happening here, except the miserable heat and no rain to cool it off any. I dread to see the water bill!
Kathy
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Leah - praying for you as you proceed with all your surgeries and plans. Do let us know when you can come to the states and we will have a big gathering for you when you get here.
3jays - so glad they finally listened to you and now have a plan in place. I do hope you can make it to mecca. Hope the synthriod does the job it is supposed to do for you so there won't be any need for radiation.
My infection seems to be clearing up and I promise to stay out of the yard at least for a while. It is too hot to even go outside now anyway. We really do need some rain and cooler weather. Our water bill will look like the national debt!!! Not really but it will be considerably higher than usual. Three weeks and we are headed to CA to meet our newest grandbaby. I have my next treatment on the day the baby is due, Aug 2nd, and I will have to wait 4 days before heading there to be sure I am strong enough to get there.
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Hello everyone,
Things have been very busy and crazy trying to get ready for my surgery, which is tomorrow. I will arrrive at the hospital at 8:00 am, get an injection of the radioactive dye for the sentinal nodes at 9:00 and the surgery will start at 11:00. I have only read a few posts and did see Marybe's post about her liver mets. I am so sorry. Hugs and prayers to you.
I worked a half a day today and much to my surprise, a very large group of coworkers and friends presented me with a basket full of things for me and my girls. There was even some of the Pink Lady pockets for the drains! There were gift certificates for home cooked meals from different individuals, books, puzzles and much more. One of the directors had asked us to prepare a list of our favorite things and the gifts were based very much on that list. I truly felt support and genuine caring.
It will probably be several days before I am able to post again, but wanted to check in with you all. I will be thinking of you all as I enter this phase of my treatment. God Bless!
Phyllis
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I'm happy you have a large support group around you momoftwo - you certainly have one here!! Our thoughts & prayers will be with you tomorrow.
Martha
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MomOf Two: will be saying prayers for you.. we're all there, hiding in the stupid hosp gown..ck and see.......3jays
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Phyllis, prayers going up for you! Take care.
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Phyllis, Will be thinking of you today and sending my prayers. How nice of them to give you that basketful of goodies. They didn't have those pockets when I had my mastectomy, but my friend Lee loved them.
3jays....really hope the synthroid gets things going in the right direction and you start feeling stronger every day.
Amyjo....you are becoming one traveling fool, aren't you? That is what I want to do once I get this SS thing underway, but I tell you just looking at the paperwork yesterday was overwhelming and made me want to go bury my head....much the same way I feel at taxtime. If I had to take any sort of a written test at this stage of my life, I would fail it for sure because it is like things get all scrambled in my head and I feel like the walls are closing in and my brain will explode.
Thanks to all for your good wishes and commiserating with me on the CAT scan results. In my usual fashion, I am once again fine.....or I should say, not worrying about it and busy with other things. The onc at MDA thinks Xeloda will work for me so just have to hope my onco goes along with that. Given the outlandish tumor marker # and the results of the CAT scan, I don't see how he can even argue the halaven is working.
The cortisone shot is helping I think...he showed me two exercises to do so that it won't lock up. I was taking lasix on top of my HCTZ yesterday (cardio doc said I could do this) because my ankles and feet were just so swollen so last night I was getting a lot of cramps and spasms....I keep tonic water by my bed. Drinking that stuff always reminds me of Sue Ellen Ewing....no wait, she drank Club Soda, right? Remember Dallas? Oh yeh, I am back to normal...here I go rambling. Life goes on.
I honestly do not have much gardening to do now.....and my seeds are sprouting....gerber daisies and cosmos.....I am excited. Have a good day everyone.
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Marybe, I'm sure glad you are at ease with all that is going on. I take lasix everyday as part of my meds for high blood pressure so I'm surprised that your doc didn't have you on them before if your legs are so swollen. For the cramps I take magnesium which tends to stop all the spasms as well. Don't particularly like tonic water and I find the magnesium is cheaper any way....lol.
When your garden blooms you'll have to take some pic's and share so we can all see the product of your labours.....it sounds lovely!!!
3jays sure hope that synthroid is starting to kick in!!!
Phyllis, good thoughts are following you to theatre. Hope your recovery is swift and as pain free as possible!
Love n hugs to all. Chrissy
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Chrissy....since I got cramps with the lasix before and the potassium they had was messing up my levels, I started taking the HCTZ and it actually seemed to work better for the edema, but the last week or so....fat city....I think this beastly heat has a lot to do with it. I will take some garden pics....it's a work in progress.
Maya, Thank you for the candle.....lovely.
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I take HCTZ every day, full pill, but still seem to retain fluid too! Is lasix an OTC or by prescription only? I know how much 24 hours of urine weighs as I've had that test many times (retaining all urine in a bottle for 24 hours) so even a little bit of retention can add 10 pounds!!!!
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Barbe, in Aus it's Px only, I don't know about over there. My doc gives me Px for 100 pills at a time and so far I'm only taking one a day so a bottle does me ages. I think I've lost about five pound of fluid since I've started to take them......even my wedding ring is loose again!!!...lol
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Chrissy, were you on HCTZ too? Or is this new to you. I wonder if I should ask to switch meds...?
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No Barbe I've not used HCTZ only the Lasix although I've used that on and off for many years but now it's not a matter of do I need one, it is part of the meds routine for the blood pressure. For that I used to take Micardis 40mg and Noten 40mg but after my last surgery, they couldn't get my blood pressure down so my Micardis was doubled to 80mg and a lasix was added so I've been on that regime for about four months now and it seems to have bought it down to a more acceptable level.
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I've been taking BP meds for 18 1/2 YEARS!!!!!! I've been as high as 214/112 while on meds. It's just crazy. At one point it was taking 5 pills a day just to keep it in a high/normal range. Now I take 3 pills a day out of 18 for my BP. Whew!
Right now I know I'm retaining too much fluid. I can't even close my hand into a fist!
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OMG Barbe, have you spoken to your doc about this? I know hot weather doesn't help that's one reason I hate summer, but if you can't form a fist that's a real problem! When I said my BP was good, I meant like you, the high normal range....lol....funny what we concider good nowadays isn't it?
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Phyllis, prayers going up for you and hoping your surgery goes well. Most of us are veterans of some kind of similar event and can offer a lot of support. Just let everyone around you take care of you and don't do too much too soon.
Love,
Dragon
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I am in and out the door..love the new photo Crissy, it is a good place
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Barbe, The HCTZ I get is actually combined in with a BP med....what I take is Triamterine/ HCTZ, but I DO NOT have high BP. I told my doc this when she lst prescribed the pill and said it is a very mild BP med and I have not bottomed out or anything so guess it it mild. Maybe the combo would be good for you since you do have high BP, Barb. Lasix is a RX....the problem with it is that it does deplete you potassium so that is why they prescribe potassium along with it. I developed this edema thing when I was on abraxane.....now it is a once in awhile thing and I will say I think the extremely high temps and humidity are adding to the problem.
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Did someone want to see pics of my garden? Even if you didn't here they
are.....
the columbine just seeds itself all over the place and some of those other flowers have become rather invasive, but it makes for sort of a wild free look. 0 -
OoohMarybe. Gorgeous!
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