Illinois ladies facing bc
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A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world. ~Lois Wyse0
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Hey hi everyone. I'm going to have another one of those days....have three things added in already and still in pj's. Double sigh here !!!! Guess that is ok as it will keep me out of trouble if I am lucky.
Laura..my California dentist removed my mercury fillings years ago. I thought it was standard now and that everyone would be "talked" into having the newer, supposedly safer ones put in place of the mercury ones. Do you hear another sigh...it's there. Glad your case is going so well and that Marina just lives down the way from you. That is truly great. It is a small world.
Thrilled too Marina that you are being "flooded" with some attention and hopefully will have the "best" help available.
Loved reading little life excerpts. Am learning a few things I never thought to ask.
Well, though I'd love to stay a little longer....best get it together and get out of here. Before you know it I am going to be neck deep into my day....and hope I timed it all right.
Warm hugs, Jackie
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Jackie - It's great you had them removed. I still have two and they worry me quite a bit. My dentist, happens to be somewhat Holistic. He explained the removal process. It's amazing. He said he and his assistant practically dress in hazmat "wear" complete with oxygen masks during the removal. His patients also wear an oxygen mask. He creates a sling like barrier "thing" in the back of the throat to prevent the mercury from being ingested. It's quite a procedure. I've read stories of people with Fibromyalgia, etc. whose symptoms were gone after the mercury was removed. As soon as I can, I want to have mine removed. He also has his patients take Chlorella before the appointment, because chlorella binds with heavy metals and prevents them from being absorbed by your system. And the day before, he suggests 3000 mg's of Vit C to boost the immune system to help block any stray vapor or ingestion.
Speaking of all this...where's DONNA?
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Hi again everyone - thanks for the good cheer & support, as always.
Marina - I'm not here often but I've read some of your posts. Just want to give my support & prayers to you; sounds like you've got a good team working with you - I wish you the very very best!
Blackjack - yep, rads are with Dr. B - he's so nice! Everyone in that office is nice - ooh and they have a big bowl of fruit & granola bars for patients to snack on in the waiting room
Wendy - can we please all go to that beach ? I don't care where the heck it is - let's go!
Sorry I'm not writing to everyone - I need to get my lazy butt dressed.
Also wondering how Ginny is doing!
Ohhh happy news - I'm taking another week off from work !! YAHOO!! DH & I figured out that we can swing it financially. It will be nice to start rads next week & not have to go to work.
Happy Valentines Day to all of you *sweethearts* - Juliet
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That was kinda fun reading about everyone and their lives.Marina, your abdomen may very well be hurting with all the stress of the port and the news. If the port is bothering you, then your whole body is reacting to that!
I am 61 and retired from teaching after a zillion of years, but I still work some days back at my school as a sub. My DH is a lawyer and says he will never retire which is probably a good thing for the marriage. I love him dearly but enough is enough! We both like to travel but haven't done too much of it recently as we can't be too far awy from the grandkids as we love them so much. I have to start planning that. I have two daughters, one married with two kids and the other pursuing a Masters in Child Dev. I love to write and am working (very slowly) on a young adult book. I doubt my book will be published, but I love writing it all the same. I was diagnosed three years ago with BC and there are still days I wonder if that actually happened as it all seems so surreal. It happened as I have the scars to prove it as like Laura, I was too chicken to do reconstruction. They say we have come so far nearing a cure, but sometimes I wonder. I know so many women with cancer. I love this discussion board and the people on it. They are my special friends. I will tell "real time" friends something said on these boards and they will ask, "Where do you know her from?" and I tell them a special friend in a group I belong to. That is more than enough about me. Take care! Susan
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Marina, University of Chicago is very well respected in cancer tx. Dr. Olopade is studying hormone negative bc there. She is Nigerian, and African women have a much higher rate of that type of bc. I'm hoping they can see you soonest. It is a little bit of a drive, but worth it. I used to do it frequently because my son attended UC, and lived in Hyde Park.
If you are no longer breast feeding, you could get something for sleep or anxiety from your doc if you want. It is a common problem after dx, and sometimes during tx, and they are used to it.
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Whether you're "spritual" or not, this young girl is AMAZING (make sure the volume is on)!
http://www.youtube.com/watch?v=rmm-0-Rdxo8&feature=player_embedded
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Got another wig... a bit funkier but similar to the one I bought online for $45 vs the 300 I paid today.. boy they sure take advantage of US!! At least I have insurance for now.. My hubby is adding me to his too now..
So, I've made another big decision.. I am not getting a liver biopsy on Monday.. Read about the risks of bleeding and chance of re-seeding the liver.. so why do that when we know what it is.. That way if the chemo shrinks it, it's confirmed.. Any thoughts?
Smerf, that in fact is the Doctor.. She is out of the country and back on Monday so I'll see what she says.. I will stop looking at on-line info.. and just pray for no more bad news.. as my husband says.. "WE HAVE TO CATCH A BREAK SOMEWHERE!!"..
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Hi, last Wednesday I renewed my driver's license and when asked if I wanted to donate organs, I said yes but that I was breast cancer survivor. I was then told I could not be an organ doner. Laura just pm'ed me and found that this is not necessarily true. I cannot believe I was told I could not by that woman! Anyway, I wanted to clarify this as I do not wish to promote incorrect information on such an important choice. No one would really want my old organs, anyway, but this seems like a big mistake for someone ito make when working with the public.
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Marina - I do not know much about Liver biopsies. But it's great that you have done the research and made the decision that's right for you. Based on what you posted, I would probably make the same decision. Three spots showed up on my Liver back at diagnosis time. I was told they are Hemangiomas. Perhaps you can ask your Dr. if there's a possibility that yours are "just" Hemangiomas as well. They didn't grow or shrink during chemo, which was a good sign. Good luck with your appt with Dr. Olapade. Try to remain optimistic. I bet your wigs are great...in several months your little one just might be pulling it off your head. Hang in there.
Susan - I really wish you would write a letter to Jessie White about your experience. He has done a great job promoting organ donation here in Illinois and I truly believe he would appreciate your input regarding your experience.
At present, throughout the U.S., there are over 100,000 people awaiting organs.
Here's the info I sent to Susan:
United Network of Organ Sharing http://www.unos.org/
Myth: Your history of medical illness means your organs or tissues are unfit for donation.
Fact: At the time of death, the appropriate medical professionals will review your medical and social histories to determine whether or not you can be a donor. With recent advances in transplantation, many more people than ever before can be donors. It's best to tell your family your wishes and sign up to be an organ and tissue donor on your driver's license or an official donor document.
I just sent an e-mail to the following - to verify the above and I will let you all know what his response is:
Brian Bush
Donate Life Illinois
Phone: 618-439-5030
Email: bbush@ilsos.net-----------------------------------------------------------------
I hope this isn't too morbid of a topic...but, my friend's daughter was on the waiting list. What they went through, with waiting and hoping and praying was quite sad. As it turned out, her twin sister was able to donate a Kidney to her. Both girls are doing great!
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Another huge day -- starting to wonder if I'm living right. Well, I'll just look at it like this....at least I can have these marathon days where I'm going for hours -- not always working hard the whole time, but doing things.
Marina...I'm very glad for you. Hope you will let your Dr. help with your decision about biopsy. You pretty much have made it I think --- and am glad that you heard from Laura and the spots on her liver. I felt from the minute you spoke about this that it might not be cancer in your liver at all. Also, sometimes ( though we do need to do some research ) too much reading can be problematic. There are so many problems to think about and so many side effects to everything and for many people very few of them I think actually happen. Has only been in the last few years that we have been "made aware" very much of se's. Dh and I listen to some of the ads on t.v. and just look at each other and shake our heads....feeling you would really HAVE to need this stuff to actually risk taking it. But hey....that was one of my first thoughts about chemo, since at first my initial diagnosis read that I probably would only have a couple weeks of rads -- one path report later and I was almost begging for the chemo.
Susan -=- so interesting about the organ donation. I have thought a time or two about it, but sorta wondered since I've got 30 more years to go -- will they be using donated organs then, or will they have found out how to "clone" organs etc. Well, we will see. I'll keep this thought filed for future handling.
Well, sweet friends....I'm not sure I'm making much sense and if I did accidentally....probably can't count on it for too much longer. I'll see you all later.
Warm hugs, Jackie
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Ladies:
I love country western music and I know you either love it or hate it. DH and I just went to see Crazy Heart and this was such a great film. We are going for the sound track tomorrow. The film was not lighthearted, so if you need something light, stay away. Jeff Bridges deserved that Golden Globe for his performance.
Have a great Sunday!
Susan
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Happy Valentines Day to all of my Dear Friends here. I have another question, I have not mentioned it because its been bothering me too much.
I have a lump on my bicep. I pointed it out to my onc about 6 months ago he said it was just muscle. Last week it seemed to be bigger and kinda sore. I went to my doc who sent me for an Ultra sound and xrays. She called and said they are not sure what it is but they see some kind of lesion on my bone. She informed my onc and is sending me for a bone scan. Now here I go again freaking out. I thought this was all over. Has any of you had anything like this. I had a PET scan in Oct. If it was cancer wouldnt it have shown up then. Does taht kind show up in PET scans. What else could it be
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Laundry Fairy where are you????
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Happy Heart's Day Everyone! Please spend it with those you love...even if you don't do anything special...just do it together! And may I also say....
A huge and very Happy Birthday to Susan!!!!!! Glad you liked your movie...I am not a fan of true country music but I do love the crossover stuff....anyone listen to "Before He Cheats" by Carrie Underwood? The lyrics are a hoot! And Susan...sitting here, watching "High Society" with Grace Kelly - gosh, she was beautiful!
Marina....I am glad you have done your reading and making decisions that you can live with. I did work for a gastro. for 11 years and he did lots of liver bx's....you are so right about the chance of bleeding - you must remain in the hospital overnight (or at least - you used to - who knows with ins. these days) but then...for those 11 years, we never had a pt bleed. Good luck tomorrow - I hope you can get an appt, or at least a review of your medical records and an opinion. Like I said before, I got all my wigs from wigs.com - but be careful re: the return policy. However - I did also buy some of the color sample wheels so if you need to borrow them, just ask! And this is why we have this forum - so we can freak out here. All of us have been somewhere in the journey so we really do get most of what you are feeling. Hang in there!
Budders...Oh great...something else to worry about. I really don't have an opinion one way or another as to what this could be but it could be lots of things so try not to freak out too much...one step at a time...baby steps...you'll get your answer. Maybe you have been doing too much laundry - wink-wink!!!! Hugs honey...let us know what's what, okay?
Laura...that's why I asked about organ donation. I knew that our organs are probably a no-go, but I thought the corneas might be used??? I have to see the opthal. on the 22nd so if I remember, I will ask him about that. I checked the phone lab result tree yesterday and there still wasn't anything recorded for me re: my D level but my pcp was off this weekend. I will check again tomorrow night and if still nothing, will call Tuesday. Ooops...I was supposed to check for that list, wasn't I! I AM a dork!!!!
Jackie...it's still cold up here but with the strronger sun in Feb the days are actually pleasant! I didn't even turn on my heat in the car. Even some of the snow has been melting! We are supposed to get a little bit tonight tho....
I wanted to go to Pheasant Run for the home show but it's like pulling teeth to get DH to do something like that so we really don't have anything planned...but we will NOT be going out for dinner! Too crowded!
OH...and Marina....DH is short for "dear husband" (or...dam* husband...depending on our moods!)
Have a lovely day everyone!
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HAPPY BIRTHDAY SUSAN !!!!! Hope you have a wonderful heartfelt day with your family and friends. I do like some country music, but wearing boots to dance in is another story. lol
HAPPY VALENTINE'S DAY TO ALL THE SWEETHEARTS HERE.
Laura..I did find the list and emailed it to you.
Wendy...Love the beach pic and yes we should be there now. Come on let's get going our chairs are waiting for us. lol
Marina..hope you get some answers soon. Waiting is always the hardest. I too had liver issues and opted out of a biopsy. We just wait and see for now and I am ok with that. Hang in there...
Buddy.. hoping your bone scan is ok. Hang in there.
Smerf...having fun in the snow. Hope you are having a good trip.
Rita...hope your driving home is not to bad. Be safe on the road.
Jackie....did you get lots of snow by you and how are your animals doing in this cold weather. My lab love the snow, He wants to be outside all day if I let him. He is all black so it is easy for me to see him in the snow.
Well just wanted to stop by for a quick hi. I have a very busy day today. I am having a Valentine's dinner tonoc for my friends. Serving heart shape pizzas. Yum Yum. Wishing you all a wonderful Sunday and Happy Valentine's Day to all.
Remember to be healthy...be happy.. enjoy life.
BJ
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Marina-don't be afraid to be a little P & P(pleasant but pushy) when you make that phone call tomorrow for your appointment. I worked in a very busy, over scheduled eye clinic for 13 yrs and t when patients could not get appts in a timely fashion they would have the referring doc call and that would usually work. Or ask to speak with the office nurse or the office manager. Don't be afraid to explain your needs. I am a believer that you, yourself must be your best advocate.
Good Luck and let us know how things turn out.
Happy Valentines day to everyone. Hug the ones you love!
Navy
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BUDDER - Hugs to you! I'm sorry you have this to be concerned about. Try not to freak. Although I know it's difficult. You know we'll help you through this. And yes...it IS always something. Please let us know what they say when you call tomorrow.
Carolyn and Marina - Hope you're having a calm weekend.
bj and Wendrew - Thanks Dorks! I got the list.
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HAPPY BIRTHDAY SUSAN!
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Happy - Happy - Happy Big V Day today. I'm sitting in my computer room watching this really pretty snowfall. I don't think a big accumulation is coming though they do say it will be with us all day. This my favorite kind of snowfall....gentle and steady, and easy to see. It's a light snow so will roll off the car easy. Denny is working today...so. It is wonderful to be the age I am and still feel such delight over a gentle white snow on a holiday that I don't really have to observe. All my days are holidays -- every day a chance to be kind to people and animals and try to grow in some way as a person. Could a person ask for more?
Susan...I'll be looking for that movie. I love country/western music and have for a long, long time. Saying that though....I have moods where I love piano music and one of my all time favorites to listen to is Zanfir. He plays the Pan Flute and that is very unlike most of the flute music you hear -- much richer in sound I think. Zanfir also makes many of his own flutes and even has a couple extra notes available on his. So I can easily listen to something other than C & W and enjoy.
Big Happy Birthday to you Susan -- wish I had some great graphics.
On another blog ( how many times do I type blob ) several people were using PhotoBucket and got a virus that traced back to it -- I don't think everyone gets it. I know you use Photobucket Wendy and everything has been ok.....so think it was something that snuck in that also got re-cleared out -- still I decided it would just be my luck so even with this new computer that is now obsolete due to Windows 7, I haven't tried to learn.
Dh put 7 on his computer -- I just don't get what the big deal really is with it. And some of the things I saw made it look harder to actually use.....I think for the home and old when we atarted computer user, I still like Vista the best of any. I have had no problems at all with it. There again when you don't do much ( oh please computer God ) what could go wrong.
Bj -- if I were a little closer -- your dinner party sounds such fun with heart-shaped pizza to eat. Hmm, the animals. I sometimes don't like the snow for them but the majority either have shelter -- most of the colonies have little houses full of straw to snuggle into when it is really cold or raining -- or snowing. One other group go behind a fence and since there are some houses there I think they have found an area to tuck themselves into when weather is rougher. Tried putting little houses out for the cats but the store removes them. I don't know if it is the store or the guys they send out to clean the area behind the store, but when least expected the houses disappear.
Buddy -- interesting that you are told for months that it is nothing -- and now it may be something. I too thought Pet scans would basically show everything -- that even some Docs didn't like to use them due to all the "false positives" that would often turn up. Well, my addled brain could think a lot that is not so. I will just pray it is a nothing as was first stated to you.
Hope you all have a marvelous day. I will be feeding the colonies later and helping Maggie today. A happy day in store for my part of the world. See you all later.
Hugs, Jackie
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Here is something amuzing for today :
I don't understand why Cupid was chosen to represent Valentine's Day. When I think about romance, the last thing on my mind is a short, chubby toddler coming at me with a weapon. ~Author Unknown
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Happy Birthday to you, Susan. I hope you have a great day!
Marina, oftentimes they won't do a biopsy on a liver if it appears to be too vascular. Case in point, my DH has a liver lesion, no cancer that we know of, but doc will not do biopsy because of the vascularity. Radiologists can make the dx of hemangioma by certain characteristics of the lesion on CT, but his does not have those present. So he has had another CT called triple phase, and an MRI. We are told to repeat it in a year because those were also inconclusiver, and that's it because his liver function tests and liver tumor marker are normal. I believe you have made a good informed decision with the info you have. It is true, as mentioned above, that you might get in quicker if your doc gives a call to Dr. Olipade's office. My DH did it for me.
It is true that once we have cancer we can't donate organs. The DMV woman was stating policy, and those are her instructions. I think you can call Gift of Hope, I think they are called now, and ask them about various organs, including corneas. Once in awhile an organ recipient does get cancer because they received an organ from a donor who was undiagnosed. I too was bummed out about this, but I understand. Age is no longer the barrier it once was. My cousin, who was 70 at the time, got a kidney from a 72 year old man. I recently attended a lecture on the subject, but I think my post is already too long! My cousin is doing great, by the way.
BJ...lots of shopping here in the mountains. I'm eating chocolate fudge from the Rocky Mountain Shop, and enjoying the view. See you soon!
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Susan, actually, I never checked with Jessie White, but was told at DMV that history of cancer precludes donation. I did not question it, because I know the docs don't want the chance of a random cancer cell being transplanted. It could be a cell that was not causing any harm to the donor, but may become active in the recipient. The doctors have to be so careful, legally speaking. The medical history of a donor is very carefully reviewed prior to any organ use.
Hey Wendy, no beach here, but a beautiful heated pool and hot tub ten steps from my door. It's a fun experience to be outside swimming even as it is snowing. Not to be negative about this gorgeous place, but it is a little wasteful in the energy department.
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Susan - Happy Birthday to you! I hope you get out and do something FUN!
Buddy - It seems odd that you'd have a bony lesion that you can feel from the outside of your bicep. Hopefully the bone scan will clarify things for you. Keep in mind... when I had my initial bone scan, they found a tumor within the neck of the femur. Pretty much all my docs were preparing me that it was mets. But I did do the biopsy because one radiologist said he didn't think it had a mets "look" to it. And it turned out to NOT be mets, but a different kind of bone tumor (mostly benign). So don't panic until and unless you absolutely have to!
Marina - Interesting about the liver biopsy. I'm glad you're doing your research and educating us as well. That specialized doctor they are setting you up with sounds interesting. I'm looking forward to hearing how your visit with her goes.
Laura - The last time I got my driver's license renewed, I just answered "yes" about organ donation and didn't volunteer anything else and they didn't ask. If it ever gets to where they actually are trying to exercise that option (yikes!) I'm sure (at least I HOPE) they'll go through the medical history and decide what they can and can't use at that time.
Smerf - I'm so jealous! But I'm glad you're having a nice vacation away.
Jackie - I have a Photobucket account, but I rarely use it except for video sharing. I use imageshack (imageshack.com) for almost all of my photo uploads. It's pretty user friends and I even added the imageshack toolbar on my Firefox screen, making it even easier. I've never had a problem with it.
BJ - I LOVE the idea of serving heart-shaped pizzas at a V.D. party. I'll have to put that on a list for next year. Also, thank you for the the insight and support. I am having an endoscopy done later this month and I'm glad to finally have it scheduled.
Wendy - I went to watch my niece at a dance competition yesterday at the DuPage expo center across from Pheasant Run. I saw the signs for the Home Show and debated going in for a bit. I wish we could have talked sooner about this, I would have loved to go with you today. My V.D. plans all involve doing laundry! *yawn*
We did go out to dinner last night though, to a place I highly recommend to any of the ladies in the area. It's called Montarra and it's in Algonquin. It only took about 25 min. to get there from my house. We took my parents there for their 50th anniversary last month and just LOVED it, so we went for our V.D. date last night. It's a really nice restaurant, somewhat upscale, but not stuffy in the least. Very friendly and efficient service, and a menu that is to die for. It's right on Randall Rd. just south of Algonquin Rd. You gotta love it when you enjoy every single thing, from appetizer to dessert, that is served.
On a more serious note... I think I'm going to start Lexapro today. I've been resistant to starting any of the anti-depressant/anxiety meds, but it's come to that point (almost 5 years out) that I think it's worth giving them at least a trial run. Maybe it's just the winter blues, but I just don't feel "happy" enough of the time anymore. I don't want to waste any more of my days going through the motions and not feeling the happiness that I really should considering all the positive stuff that I really DO have in my life. Dwelling on the negative is something I am tired of suppressing all the time. I don't know if Lexapro is the answer, but one of the ones that seems to have a lot of success with few, if any, serious side-effects. So, what the hell? I'll give it a shot and add it to the pill box for a few months.
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Thanks, everyone! I am having the most wonderful birthday! We went to dinner last night and the movie. My son-in-law's grandfather died so he and my dd and the babies had to go to Boston. We are celebrating next weekend with them. My sweet second daughter is coming over and we are watching "Wizard of Oz' because we are hopelessly in love with that movie! Paul gave me my soundtrack for Crazy Heart and I am wearing my silver-studded boots, listening to the tunes and pretending for one day I am a cowgirl (a sixty-two year old one at that)! Paul is making dinner, and yes, Laura and Wendy, it is smashed potatoes again. He has a roast going and yum I cannot wait! He is taking Wednesday off and we are going to the auto show. So ladies, life is darn sweet here for this girl. Kater and Wendy, I loved the lyrics! Talk about sweet revenge. I also love Underwood.
On a more serious side, Marina thoughts will be with you tomorrow. Your tenacity amazes me.
Rene, good move to change what is not working for you. I hope the meds help. I took antidepressants for chronic nightmares of all things. Has something to do with serotonin and probably, for me an overactive imagination. I am off pills now, but they got me through a tough time.
Have fun! Susan
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Heart shaped pizza, dinner out, swimming while it's snowing...lots of great ways to spend the weekend.
Irene - Good luck with the Lexa. I hope you get some relief soon.
Jackie - Today's quote...GOOD point! lol
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As for the organ "thing"...hopefully I'll hear back from Brian Bush with Donate Life Illinois. He seems to be the expert that will answer our questions.
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Hi ladies - Happy Valentine's Day and Happy Birthday to Susan!
I haven't read the thread in a few days and so I was shocked to come back and find out the bad news about Marina. And Buddy!
Marina - you are in my thoughts and prayers. You do sound like a fighter so keep fighting! You are deserving of a break! Good luck getting an appt with the Dr. Sounds like you have a great team behind you.
Buddy - I too thought pet scans showed everything. You are in my thoughts as well.
Not much new with me. Had a nice relaxing weekend at home and am enjoying watching the Olympics. How about that Apolo! My sister and her family were there at that event. She said they were jumping out of their skin!
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Rene Thanks for the positive news. I dont think???the lump has anything to do with the lesion. I think the lesion appeared when xraying my arm .. She said first she would address this lesion then later she will look into what the lump is. Could this just be osteo from chemo and arimidex. But I had a bone density last month it did nt say anyhting about my arm only my hip having osteo. I wasa really hoping that the Clean pet scan 3 months agao would make me worry free. Now I am reading bone cancer might not show on a PET. Cant imagine what a lesion on the bone could be.
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HAPPY VALENTINE'S DAY!!!
Happy Birthday to Susan!
Buddy hope that everything works positively for you. Sending you a big hug.
Marina, I've been reading your posts and hope that you are doing ok. My heart goes out to you and you are in my prayers. Hopefully, the dr from U of C will have some good news for you.
Had a nice restful weekend. Have my bone scan and CT scan scheduled for next week Thursday. Dr.'s office is supposed to work on getting insurance to pay for the 2nd MRI. Just found out that the insurance company never paid for the first MRI because the first MRI facility never responded to questions they had. I'll have to look into this. And so the insurance drama begins......LOL
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Well, my oncologist called and agreed with my decision to forgo the biopsy. I am so relieved because I thought maybe I was missing something... Basically he said that it's only to be 100% sure.. but the CT was pretty certain.. and it won't change the treatment.. So we will repeat the CT in a few months to make sure the "beast" is getting tamed!! Can't be a coincidence that the name of my Dr is the same as the Chinese year when my DH was born.. and I was the ONLY one who succeeded in taming him!!
HAPPY BIRTHDAY SUSAN... what a great day to have a B-Day, when everyone else is celebrating such a nice day!!
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