Calling all TNs
Comments
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Well, some good news I guess - I was approved for my SSD back "pay" - so they did consider me not able to work from the start. I was checking my bank account today and voila!
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OK, dogs are boarded (
never had to do that before) and we are headed out. News at 11 (or whenever I get to it). Hopefully we will get to see the Northern Lights.Until then:
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Ladies, I'm in need of your collective wisdom!!!!!
I went for my pre-surgical visit today, and a follow-up with the onc. (I'm going to interject here that I am also at Dana-Farber, which is supposedly a world class center, but I'm feeling you Suze!! I've seen to many things here, that I'm not much impressed with either ((((HUGS SUZE))))
Over the last few months, I've listened and absorbed all kinds of information from the ladies here. I've heard you talk about "tumor markers" and all kind of follow up scans (and the anxiety they have caused you).
Today I finally talked with my onc. about what my follow up care will consist of. I asked about tumor markers....nope, they're not doing them. I asked about follow up scans. I was told that it is "not their standard of care to do ANY follow up scans". Apparently if I get a "symptom", they will investigate, but they do NO follow-up scans.
So NOT a happy camper right now!!! I'm not comfortable with waiting until some ache or pain gets bad enough that they investigate it.
So ladies, my question is, what has been your experience in your follow-up care? Am I being unreasonable, or is it reasonable to expect at some point they take a look and see if this monster has metasized??? (and hopefully before it gets a chance to spread to multiple sites!) I'm not talking about constant scans, but I don't much like the "wait till you feel like something is wrong" school of thought. My choices are to get a second opinion regarding follow-up care, or my primary is a sweetheart, and if I give him the symptoms, he'll probably give me the tests, lol.
As I said, I have much more faith in your judgement, then I do in the medical establishment right now. (Trust me, us nurses don't put much faith in the system).
Titan, saw the pictures.....you look Marvalous!
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Kathrynn, You are right that follow up care varies, and there is no one correct answer. My surgery and original oncologist were at Sloan Kettering, and like Dana Farber, they do not do tumor markers or follow up scans, unless there is a symptom. I was shocked, but have come to understand the wisdom of this. My treatment (using the chemo prescribed by Sloan Kettering) was in Asheville, and my oncologist there also does not do tumor markers or follow up scans, unless there is a symptom suggesting a need for a scan.
I'm sure you will get many opinions on this subject, and you have to decide how you want to play it. My doctors convinced me that scans cause unncecessary anxiety, and that there is no advantage to catching a metastisis before it is symptomatic. Many survivors live by the rule that if there is a pain or something strange that persists for longer than two weeks, tell your doctor.
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I was scheduled for a ct scan nxt month. That is all my dr had scheduled for a post treatment scan. I felt uneasy about this and called her office and asked if I could also do a bone scan and breast mri, so I could have peace of mind. She said no problem and got them scheduled the same day. Yeah I am nervous, but at the same time I wanna know too, before I feel something. I think all dr's should be williing to do what makes us feel at ease.
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Generally, scans are only done here if you are symptomatic. I didn't like it at first but I have come to learn the evidence behind it and see the wisdom of it. I think tumour markers are only considered useful for following metastatic patients.
That said, I had a full work-up before surgery: breast MRI, abdominal U/S, bone scan and chest Xray. That's pretty routine to check for mets prior to treatment.
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Mine uses tumor markers, but only as a "barometer" if they begin to rise above normal. She will then do scans to investigate, otherwise only scans if I have symptoms. Although, she did say if I ever personally feel the need for one, to just tell her and she will schedule it. I pray to God I NEVER need one - period. I am petrified of them! Only had them all prior to treatment to make sure this crap hadn't spread anyplace else.
Suze - sending you love and prayers that this will all be easy on you, and have the great outcome we all are anticipating.
LJ - sending love and prayers to you as well, and want you to know we are all thinking of you and hoping things are going well.
Heidi - a wonderful and safe trip to Iceland and back to us!
Titan - hope you are all healed by now and beginning to wind down from all the hoopla of the last months.
MBJ - Hope you have an easy and fun-filled move to your new home and state (are moves ever easy????). Looking forward to having you as a neighbor! (Ha!, I'm in GA, but you will be closer).
Hello and hugs to all you other fine ladies on this thread.
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Kathrynn - I totally blanked that you would be there, I'm so sorry I didn't give you my schedule! Not that I knew it anyway, what a mess! Once my schedule settles down, I'll let you know when I'll be there and hopefully we can meet up :-).
I'm of mixed mind about scans - I got scanned a LOT, but that is because I was so high risk, and often had what I considered symptoms. In the end, it didn't matter - I had a "clear" abdominal CT scan 3 months before my awful PET scan. Short of scans every month, nothing would really have been caught sooner.
Tumor markers are something that work for some - and if they start testing them from the beginning, doctors can usually tell if they are reliable for you as an individual. They are better when used over time versus a snapshot of what is going on, more in telling about trends.
So it doesn't surprise me that DF doesn't typically do scans unless needed. But if you want scans, then I'm of the belief that you will be able to find a reason to get one *wink* if you can handle the stress. I hope that doesn't come off bad - sometimes we gotta do what we gotta do! My local MO was much more amenable to scans to be honest.
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I go to the Cleveland Clinic..nope..no scans etc..unless I request one..and no I haven't...see the onc every 3 months..and I'm poked and prodded and felt up for what seems like forever...He also asks about aches/pains/appetite/sleep issues/energy level.
Running..to me..is the ultimate test..I figure (and I may be wrong)..if I can run for 3 miles and feel good that I must be ok...I will be scared if some day..I run and I just can't finish...that will freak me out..I hope it doesn't happen.
I honestly think that having a scan..for me anyway...would take me back to the awful, terrible stress of being diagnosed, surgery and chemo..I just don't know if I could handle that again.
Of course on the other hand..it does seem that finding mets early has got to be better than finding them late...I just can't believe that it doesn't make a difference in time of survival...I don't understand this at all.
Heidi..you will miss your "kids"...!
And season that dang chicken with what?
And thanks for your comments on the wedding! I still have tears when I look at those pics..my poor DH looks like he is about ready to cry...and he never cries...he holds things in...I did my sobbing the night before..we had just gone to bed and I just laid there and made him hold me and I just sobbed about the fact that our baby was getting married...but hey..this is called LIVING..and I'm so glad we all are...it's hard to live in the present and not worry about the future....but we really have to do this...
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Hello Ladies
This past weekend was Canadian Thanksgiving and when I was contemplating everything that I was thankful for, all of you ladies came to mind and I decided that I had to stop lurking and stop in and say hello. I was diagnosed January 2010 and had surgery, chemo and finally radiation. How I wish I would have found this site at that time.
I am currently followed by a wonderful caring surgeon who sees me every 6 months. My family doc is always available and during our last visit when I asked her about scans, etc she said that only yearly mammograms were the standard and I guess I must have looked shocked because the next day her office called and said that she had thought about our discussion and decided that I should have another MRI in the spring of 2012.
To all of you ladies currently in treatment, my thoughts are with you.
Now I should go back and try and find that damn Cat!!
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Hi Ka-cey - welcome! I also celebrated Thanksgiving this past weekend and was so very thanksful for everything, too. Where are you located? I'm in Mississauga (near Toronto).
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Ok Titan, here's my recipe for bio chicken:(excuse my english terms, I'm french)
- Spread chicken with vegetable oil (2 table spoons)
-Season with Thyme and sea salt (2 table spoons of thyme)
-Put whole onion in the center of the chicken, inside
- Put in the rotisserie pan. Put 1 cup of water in bottom of pan (the water will keep the chicken moist and tender while cooking)
- Cook uncovered at 350f for 1h30. Then let rest for 5-10 min before surving
Meanwhile, take the cooking juice in the bottom of the pan to make some gravy. Put it in a casserole. Bring it to a boil. Then mix in corn starch in a little white wine (or water). Bring it to a boil. Add a little salt and pepper to your taste. And serve on chicken.
Voila.
Hope you like it. I too didn't like my bio chickens because of the texture. When I tried this recipe. Loved it.
Have a good day everyone. Off shopping with my sister today
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Thank you very much ladies. I'm more comfortable now that I've heard your experiences with follow-up.
I think I'll go with your "wink" theory Suze. When I approached my primary about possibly ordering an ultrasound partway thru chemo, even if I had to pay for it, he told me, "THEY are treating your cancer, I AM YOUR DOCTOR, and I'll order any damn tests that I feel you want or need!"
Suze, i figured you'd be having the day from hell your first day, so I didn't want to disturb you. We can meet up on a less stressful time.
Anyone heard from LJ?0 -
Hello ladies! We arrived safely in Iceland early this morning and currently I have been awake about 30 hours. Weirdly, the thought did cross my mind that if the plane went down you guys would never know what happened to me! How nuts is that?
It didn't help that the ride was very bumpy.... so, with that in mind, I'm emailing the Executrix of our Wills and letting her know where "stuff" is before we get back on that d*mn plane!
Here's a link to a few pics I took today during a 4+ mile walk around Iceland's capital. I need to take a nap now but hubby is snoring like a wart hog so I don't know what I'll do. Later tonight we'll go down to the pool/hot tub/sauna area and soak. I need to pace myself because my knee really got a good work-out today and it has to behave itself for all the activities we are doing up here.
Check it out. Nothing too special but always love to share. The terrain looks like a lunar scape around here. Hopefully I'll get some good photos of it on the glacier walk or during our ride.
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Heidi - how beautiful! Oh, Iceland looks so lovely. Take it easy on that knee - I think a nice soak later in the day sounds great :-).
Kathrynn - you'll find your groove and what you are comfortable with in terms of scans. I like your PCP, he sounds like he's really on your side. We'll definitely meet up soon :-). I heard from LJ a few days ago - she is hanging in there. Hopefully she'll come along and give us a wonderful update.
Babs - that sounds so good! I'll have to try that recipe. Yum, I'm hungry.
So I have not noticed ANY SE's from the Abraxane - but I think the steroids I'm taking are helping with that maybe? Still feeling a bit loopy, disconnected, and off, but a bit better today - I've been tapering the roids, and am on day 3 of a downgrade. I'll drop a little more in a few days. Hope to be weaned in another week or so.
Good thing today - having family night dinner with my BFF - pizza, lots of kids running around having fun, and wine. Yes darnit, wine! I'm not driving
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Just a quick check in:
titan: Sometimes the quality is not equal on organic-I have a few bad ones from Trader Joes. Whole Foods though expensive carries Mary's Organic Chickens and these are devine. I am hoping to use a local source though. Guess it depends on what they feed them! I heavily salt a whole chicken, inside and out, season on top with thyme or rosemary, tope with a little butter fat and roast at 450 for 15 minutes, then 400 for the last 45-yummy.
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Heidi: I have a friend who just returned from Iceland and she says it's just magical! Have fun-great pics!
Laurajane: Thinking of you and I will be there by the 27th! Hugs!!!
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When I saw my ONC this morning, I asked her...."So when we're all done with this treatment, how do we know it worked?" Her answer was very reassuring (NOT)..."We don't". Frankly, that scares the crap out of me but I guess I'll have to learn to deal with it like so many of you ladies have! I am part of the Denosumab clinical trial which means I'll get annual bone scans and CT scans for 5 years which provides some reassurance.
Heidi, glad you arrived safely. Iceland looks beautiful!0 -
Suze, I had high doses of abraxane 110 mg instaed of the typical 80 weekly. My first six treatments went very smoothly, didn't feel like I was on chemo. After the 7th or 8th I started to really feel it and now am exhausted. I forget, are you doing the every 3 weeks or weekly for the trial? 2 more left for me and no more avastin until way after surgery. sounds like they are going to keep me on something after the surgery and rads. Might be avastin and tomaxifien because I have 3% er positive and my doc has the thinking that it helps if you have any positivity at all.
Needed some humor the other day and got some! my hubby was outside working and heard a commotion in the chicken coop, one of the chickens was screaming and just being super noisey. My hubby ran into the coop and all the chickens ran out, but what was left was a HUGE egg! He brough it in to show me and I couldn't believe how big it is! I will have to take pictures and post it. It won't properly fit in an egg carton, it will get squahed. Probably could make a 3 egg omelet out of it!
One of my hens, all of which are organic (no peticides or herbicides used in our yard for probaably over 5 years) fed organic feed and have a huge run plus get to free range when we are out there, is eating some of the eggs. My husband says if he finds out which one is doing this we are having chicken for dinner! I said noooooooo! Hope to not figure out which one is doing it! Hasn't done it for the past few days!
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I was really down and not feeling well when I went in for chemo yesterday and wound up with the lady that always has problems with my port. Nobody else has had a problem. Well after about 30 minutes she got it working and and when my nurse came out and got me I started to cry. I just couldn't deal with it yesterday. She was so nice. Took my hubby and me into the room and spoke with us for about an hour, just about life, dealing with cancer and such. She says she gets really down sometimes seeing what patients go through and she told me it would get better. She said to have her put in the port access from now on, just go back and get her. I don't know why such a little thing sends me over the edge, but the other gals just stick it in and it works, I don't get it. She was my angel of the day, how can someone I really barely know be so compassionate and kind to us? I really have a top notch medical team, never once have I felt rushed. I told her I feel like a wimp and that I should be doing more and feeling better and then that is when she told me that the doc has me on a huge dose of abraxane that they don't usually give to anyone, but since I am strong he wanted to hit me hard to get everytning, as studies have shown higher doses to be beneficial in cases like mine. she said she could lower it and I said no, lets just finish it off strong, I can take it.
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Yeah, I think it was like having a fifteen pound baby! All hens are doing ok though! They sure let you know whe nthey are laying an egg, especially a big one. I di think I know which one, as she tends to lay pale green eggs and this one is very pale green and huge! She is a big girl though.
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How quickly do they harden? I have found eggs right after they are laid and they are hard, although I don't squeze them! I know they are soft inside the hen, but they must harden quickly. Makes sense though, as if they were hard while being pushed out they would crack! It's an interesting process, I need to read up on it again!
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I'm a little over the pink too. I happily cracked my eggs, that had a freaking pink ribbon stamped on them!
I had my port removed Wed. And he cleaned up my mx dog ears. I am wrapped up, but it feels like the buldge under my arm, is reduced. Can't wait to have a shower tomorrow!0 -
Thanks for the pictures, Heidi, that's the closest I'll ever get to Iceland! Hope you have a wonderful time and your flight home is as smooth as ice.
Never knew that about the eggs hardening only after they are hatched. Yes, of course, it does make sense, but I truthfully never realized that. Interesting.
I have those stupid eggs too, with the pink ribbon on them! I thought it was only on the egg carton, laughed when I saw it stamped on each egg too!
Suze - glad to hear it's going well with no horrible side effects. Hope it stays that way.
MBJ - Again, wishing you a move as smooth as I wish Heidi's flight home to be.
To all the rest of the wonderful ladies - wishing you all a good weekend.
LJ - love and prayers - buckets of them.
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SOmetimes the teenagers lay huge eggs, as this hen is still pretty young, about 7 or 8 months old, It is when the double yolkers happen. Have you ever seen a triple yolker? I wonder about this one! I had a necropsy done on a hen that died and the vet said that she had several eggs in her., I did not ask her at what stage, but I thought they only devloped 1 egg at a time. Maybe she was eggbound? But the vet said the cause of death was an injury to her liver and she had bled out:(. Poor thing, I had no idea she was injured, nothing showed on the outside. I bet one of my goaties head butted her:(
Should i stamp pink ribbons on my organic eggs I sell? JK!
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OMG..you guys were totally freaking me out about pink stamped eggs..I had to go and check my eggs in the fridge..they were just eggs.
You guys "crack" me up...
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Sugar77 - I'm out West, Calgary.
Heidi - I loved your pictures. Please keep them coming.
Suze35 - You are amazing. I hope you have a wonderful pizza party with your family and friends.
Michelleo13 - I had a similar response from my ONC. I hadn't informed my ONC that I had started to see a Naturopath and during my last visit with the ONC I asked for a requisition for some blood work that the Naturopath had requested. Well that set him off big time - he told me that everything that could be done for me was done and that if the cancer were to reoccur it would be too late and then he promptly slammed the door leaving my husband & I stunned. At first I was devastated, but I disliked him so much that I used his words as incentive to exercise daily, use food as medicine and not dwell on his words and make each and everyday count.
Bak94 - Thank you for the education, I love that you love your animals so much. We have 3 dogs and I find them to be a constant source of entertainment.
Titan - Thank you for starting this thread (I think that is what it is called).
LJ - Hugs
To all of you wonderful ladies, I hope you all have a great weekend.
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Teka:
Whenever I see my Primary Care doc, gyno or breast surgeon (she does all my breast MRIs, mammos and US of breasts), I just always ask that my onc be copied on everything. I guess if I had to see anyone else, I would just do the same.
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Ka-Cey if my dr acted like that and then slammed the door and walked out, that would be my LAST visit with he/she. That is totally rude and uncalled for. My dr, nurses, tech's have all been so sweet and kind to me. We r on a first name basis lol. I wouldnt dare want to see anyone else.
Pray for a lady in my town, she told me yesterday that she had just been diagnosed with DCIS this week. So sad!
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Ka- cey - I am floored that you were treated so badly. Even if he should disagree with your going to a Naturopath; he should have respected your decision. I hope you can educate him, on the errors of his ways, on your way out.
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