Calling all TNs

Just a really quick note to say my CAT scan showed that I am stable and I get to continue on the trial drug for 8 more weeks.  The logistics today at Dana Farber were not good...I'll explain tomorrow when I have more time.

Hugs to all!

Luv RV - Fantastic news on being stable, but confused about logistics?  Hope that trial is kicking ass. 

Thinking of you!

Heather

Painting - love the birds. What is the normal range for CA15-3? I think my blood draw is next week but won't get the results until I meet with MO on the 17th.

S1ssy - welcome! You'll find excellent information and support here.

Quick story - I work with a woman who recently had plastic surgery to remove her neck waddle (sp?) and to pull some of her facial skin tighter. She was complaining about a dime-sized spot of numbness and some stiffness in her neck. She also mentioned an area around her neck that has been hypersensitive. I tried really, really hard to muster some sympathy for her...couldn't do it. I had to bite my tongue!

Luv - great news!

Bak - I'm scheduled for an ooph on 11/20. I'm not anxious yet other than wondering whether cancer has already started there. I can't wait to have them out - and a double bonus, the TEs are coming out too! What date is your surgery?

OK, so as Paul Harvey used to say, "and now, for the rest of the story"...

We got to Dana Farber at 8:35 - the drive in was quick and easy from my friend's house in Milton, MA, and she came with me so I'd have company.  We go up to the 9th floor of the Cancer Center building (which I'll call the Yawkey) to check in and have labs drawn.  Well, we sit there for a while then they call me to tell me that 1) the nurse is late and 2) they don't have the lab orders.  And I had to be at Radiology (the lower level of the Dana building next door) at 9:20 to pick up the contrast drinks.  So we trudged off to Radiology, checked in there, waited a little, got the contrast drinks, then headed back to the 9th floor of Yawkey.  Got the labs done, I'm drinking my cocktails, and we head back again to Radiology to await my CAT scan, which was scheduled for 10:50.  They take me at about 11:15, do the CAT scan, then we head back up to Yawkey 9 for my Noon appointment with my doc. 

Just one little thing someone forgot...that scan has to be read and someone has to generate a report.  And I'm probably not the most important patient waiting for results.  So we wait, and we wait, and wait some more.  At 1:15 the clinical trial nurse comes out and tells us it could be another 1 - 1.5 hours before the scan report was ready, so we should go get some lunch.  Well, that's fine except we had figured to be out of there by then and had a lunch date with a friend who works at BU Med Center.  So we cancelled her, went to the DF cafeteria and grabbed lunch.  We returned back to Yawkey 9 about 2:45.  And we waited, and we waited, and we waited some more.  At about 4:15 after seeing the waiting room empty out twice, someone said, "we haven't forgotten about you."  Finally, at 4:45, the clinical nurse came out, she had the report and told me I was stable so I'd be able to continue on the clinical trial drug.  So they took me back to the exam room, took care of that business, then I had to go down to the pharmacy and get my drugs, and then go down and claim my car.  In the meantime, my friend decided she'd take public transportation back to Milton so I wouldn't have to fight the insane traffic going back then drive to Acton, where I was heading to go out with my daughter. 

So I left DF at about 5:20 and drove to Acton.  The traffic was insane - commuter traffic time on a holiday weekend.  I got to my daughter's at about 6:45.  And the good news was that I had ignored the advice of my friend to take the Mass Pike.  Turns out there was a 45 minute delay on that route.  By the time I arrived, I was tired, hungry and cranky...but stable! 

And I get to stay on the trial drug for at least 9 more weeks!  My next scan will be in 8 weeks and I'll go back a week later for the doctor appointment.  This same day stuff is not a good idea.  They did it because they knew I was leaving Sunday and I needed more of the drugs before I left.  But I should have suggested that I have the scan on Thursday.  I would rather have gone two days in a row than be stuck there the whole day. 

But, it's all good because I'm stable.

S1SSY - I have had diabetes for 11 years and underwent DD AC/T last summer.  The steroids can be a huge challenge for maintaining control of your glucose.  But it is possible (I did this) to take a small dose of steroids (5 mg) on treatment day ONLY and use other drugs to control side effects.  Feel free to PM me if you would like some details. 

OK ladies, the plane leaves tomorrow around 1 p.m. for LA, and then we leave on Thursday for Hawaii.   So....ALOHA!!!

Luv - Congratulations on being stable! I was feeling exhausted at the events of your day, wow! you persevered.

Bak - Lots of good wishes on your upcoming ovarian surgery.  I had read a prior post of yours, my dad's birthday fell on your mom's anniversary date of Oct. 3rd (I think it was your post).  My dad died as well, so when you wrote about your mom, I was also sad on that day.

Sissy - So sorry you have to join us.  Yes, it is shocking how quickly TN grows.  Good luck with the results of the tumor board.

Journey - Good wishes on your surgery as well.  I can imagine the anxiety.

Dawn - Good to hear you are going to the beach, enjoying yourself.  Water is very healing.

I am a little anxious this weekend.  Have had a headache behind my eyes for so many weeks.  Feel a lumpy (cancer side) breast for the last couple days.  But I just had my tumor markers and they were really very low.  Also had a brain MRI in April 2012, which was good, there was nothing to suggest anything.  I am hoping rather than going for another round of check-ups, just to relax and hope all these are just passing clouds.  Could a tumor come up in the brain just in 5 months after the MRI?

Ladies, see how I have issues after scans?  Brain MRI in April, headache in August.  I am very sensitive.

I have a 3 day weekend, we have Columbus day off on Monday.  Yea!!!!! planning to relax.  Can't drive around here much, there are a million events in San Francisco this weekend, traffic is supposed to be a nightmare.  So I am staying in doors, can't get stuck in traffic.

Happy Holidays Michelle.

Lovely... sorry to hear about your anxiety.   Does that ever go away i wonder.  Hope you can find some happy this weekend.

To all US Sisters - enjoy your Monday off

To all Canadian Sisters - enjoy your Monday off.

And if you are not fortunate enough to have Monday off... hope you can enjoy it anyway.

LuvRVing, I have been wondering how in the world we diabetics could handle steroids. My provider wouldn't even give me any when I had a massive allergic reaction and my throat swelled for three days. Thank you for the info, and I will get back to you for more input. BTW, are you on Glucophage? That's my only med for my DM, and I see it too is being studied for use in TN control.

Aloha Luv! I hope you have a wonderful exciting restful relaxing debauched whatever you need it to be holiday in Hawaii!!

Painting, wow I really love your cranky birds! 

Hi S1ssy, sorry/happy you are here with us.

BAK thinking of you today and hoping all goes well.

Karen hope you are feeling ok today.  Thinking of you lots.

Sissy welcome

How come in America and Canda you get so many public holidays!! not fair girls I want one   

Karen have you ever come across this beautiful little cottage in your area

Hey Annie.   They are adding one more bank holiday (stat day) to British Columbia next year... Family Day.  Great isn't it?

What a beautiful cottage.

Karen that cottage is in Asheville, North Carolina.  So lovely.  Glad to know you are keeping on keeping on, good girl. Your danish visitors will help take your mind off it a bit.  Just love the vision of you running through the market screaming lol  but don't overdue it cleaning up the river. 

Tazzy do you have to rub it in about the (extra) holidays lol.  You lucky girl.  I think I will come and live in Canada.

Hope sorry to hear that chemo knocking you out but hopefully working.  Hope your doc can get the depression under control.  Its funny but I have been depressed, just down and intermittently tearful for no real reason, since the diagnosis.  I wonder if its because I don't have any control over it and will just have to take what it gives.  Cancer Sux.   Thinking of you and sending warm hugs. 

Where is that Kathy lately.  At the casino or hiding from mum no doubt.   

Have a good day ladies.  Keep your chins up (stupid saying isn't it).  Annie      

Hi ladies, just popping in to say hello.  I hope everyone is having the best day possible.  Today is Canadian Thanksgiving and I'm stuffed. Lots of turkey, mashed potatoes...and veggies!  I'm thankful for the people in my life and that includes all the wonderful women on this board.   

Sugar - that sounds so good!