Calling all TNs

TifJ

Thanks Heidi- finally found the cat! Have a great trip!

Titan

Ha ha on the eyesight..finding that darn cat...I have to be honest..it took me FOREVER to find that cat

Thanks everyone for taking the time to look at the pics...it was a very emotional time for myself and my hubby... once all the planning was done it was time to enjoy the moment...I think that is what we all need to do..just relax and enjoy...did having BC make me feel more emotion..maybe..I will never know...but I still cry seeing those pics and remembering..and having you all share with me...well..I can never ever forget that....love you all...really!  I seriously don't know what I would do without ALL of you.

Heidi..have fun in Iceland..you certainly keep us busy with your life...and that's a good thing!

Suze..first chemo was today right?  How did it go?  

mitymuffin

Titan, Its been wonderful to follow you through all the wedding plans, and then see the lovely pictures. My goodness, they do look young, but they are glowing with happiness.

riley702

Thanks for the help finding the cat. Love the 3D pic, too. Didn't they used to have similar ones in the Sunday paper, in the comics section? It works for me if I try to slightly cross my eyes and then let my focus go 'vague', not looking at any one spot. The 3D image usually just pops out at me then.

mags20487

never would have seen that darn cat without the hint...thanks Heidi..love those type of things.  Have the best time in Iceland sounds amazing!

Titan--I have told my daughter that she cannot get married and leave me.  I will let you know how that goes during the next few years ( she is 19)

Maggie

Sugar77

Heidi - I love those stereograms!  In the '90s, they were all the rage and I had one created when I worked at Westinghouse and put it in our employee newsletter. It was really cool and had logos (circle "Ws") that displayed when the employees saw it as 3D.  Have fun in Iceland

I finally saw the cat but only after my DH pointed it out.   

Good luck Suze with the trial.

Titan - thanks so much for sharing your daughter's photos with us.  What a lovely couple.  So young and in love! You look great...your dress was beautiful.

I hope everyone is having a good night.  I just got back from a jewellery party.  There was a wide variety of handmade designs and among the selection, there were items with breast cancer ribbon charms/pink coloring.  One of my friends asked why I wasn't buying any of the BC stuff. I said I had enough memories and didn't really need to be aware.  Instead, I commemorate new milestones with other "non breast cancer-branded" merchandise.  Hello Tiffany's...lol 

Lovelyface

Suze, I am reading your posts and keeping a close watch on your progress as must have started your chemo today.  Hope it went well.  I sure hope there is a kind nice woman behind that SS counter who approves your SSDI going back last year, so that you don't have to wait 5 months for benefits to start.  And your kids get something as well until they are 18.  That is what SSDI should be all about,  shouldn't it?  Best Wishes, and you Go Girl!

jazz3000

Suze - Tell me - Should we get ready for a digital Baby Shower or what?  LOL!  Hoping things went well for you today and things go smoothly with the coming weeks. I haven't read far enough back to find out what type of trial you're trying out but am interested in hearing about it. Wishing you well tonight and feeling all right.

MBJ

Ladies:  Sending you all lots of love and light-in the middle of the move so I will just try to catch up in a couple weeks or so!  Hugs to all of you!

Titan

MBJ...my dh is bringing  home some organic whole chickens...We have had these before and I thought they were a little tough/stringy.  Do you know how to make them that they aren't tough?

Babs37

Titan-  Season your chicken and put a cup of water in the bottom of the rotisserie pan and cook uncovered at 350 degrees for about 1h30 for a 4-5 pound chicken.

Suze35

Jazz - no baby showers, thank heavens!  I think I should be happy for that, lol?  The trial is a chemo+experimental biologic agent, randomized 2:1.  So some will start with just the chemo (Abraxane), and when/if they progress, they will then get the experimental drug with the Abraxane.  It is a large study - one of the few that is strictly for metastatic TN, and it was developed at UAB.

Thank you everyone for thinking of me.  I won't go into it too much, but I have been extremely disappointed with the utter unprofessional behavior on the part of some staff at Dana Farber.  To put it mildly, it was a clusterf**k.  And in the end, I got the single-agent arm for now - so Abraxane only.  Not my first choice, obviously, but everyone on this study eventually gets the experimental drug when they progress.  Just would have preferred not having to go through that step.

I FINALLY got my chemo at 7:00 last night.  This was after being there since 9:30 AM, my back was throbbing, and at 5:30 I was told "we can't find the drug."  What???  Thankfully, they managed to locate the drug.

Anyway, no side effects yet that I can tell from the Abraxane.  From what we talked about, it is a fairly well-tolerated chemo.  My doctor assured me that if I see any signs of progression, she will scan quickly and move me over to the Tig.  It is also encouraging that my chemo nurse told me my MO already had several more treatment plans lined up for me for down the line - so she is thinking ahead.

Trying to slowly wean off the steroids - they are really messing with me - and I'll know if I am seeing a response to the chemo or not by measuring my back pain.  The morphine will stop working or work better, depending.

Sugar - good for you for both supporting your friend, and explaining your reasons to her.  I'm sure she understood.

Lovelyface - I'm hoping to not have to wait either!  But at least I know my kids will benefit from my working hard in the past.  Every little bit will help my husband down the road.

Heidi - I love the 3-D pictures!  I have a great shark one somewhere...

Titan - the pictures are just lovely.  You must be so proud, and yet, it has to be hard.  You are doing a great job there.  As for chicken, I usually just crock pot the suckers. 

MBJ - can't wait to hear when you are finally settled!  I hope it is going smoothly for you.

Have a good day everyone!

Suze35

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! 

Anonymous

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:

Teka

bak94 and Suze 35, good news about Social Security.   Suze35, at least they got you started on treatment.

kathyrnn

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! 

mitymuffin

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.  

ksmatthews

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.

Luah

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.

LRM216

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. 

Suze35

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.

Titan

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...

Ka-cey

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!!  

Sugar77

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).

Babs37

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....

kathyrnn

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?

Anonymous

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.

http://albums.phanfare.com/isolated/yYYtMLGp/1/5310685

Suze35

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 .

MBJ

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.

MBJ

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!!!