Calling all TNs

((((Suze)))

Thinking of you, too, Susan, and sending you all the positive energy I can muster! 

Suze: So good to hear from you - I'm only sorry it wasn't better news with respect to the clinical trial. I've seen some positive stuff about halaven - fingers and toes and everything else crossed for you. Healing vibes, warm hugs... 

Good morning all!

First, let me say that I've been enjoying the lighter side of our TN thread this past week  - I'm so glad we have this place to talk about some of these more, *ahem,* intimate issues.

bak - great news on getting surgery over and done!  I'm keeping fingers crossed for your pathology report, you'll get that today, right?

Heidi - MacFry (I probably got his name wrong, lol) looks all ready to go for Christmas .  Have him send some of that enthusiasm my way!!

~~~~

So unfortunately, the clinical trial did nothing for me.  We knew it was a bit of a gamble - I am resistant to Taxol, which is all Abraxane really is, but I did hope the experimental drug would be helpful.  I chose to do it now, knowing that I would be risking some progression - better at the start of the treatment was my thought.  But boy, this damn cancer moves fast!  I am very glad I did not let the standard 8 weeks go before a scan each time - as I've had "moderate" progression all around.

Both my MO in town and my MO at Dana Farber are very enthusiastic about Halaven - it is well-tolerated, and shows a lot of promise for resistant tumors.  Our goal is to get my disease under control - obviously for as long as possible - and then when I do have progression, I can look for another clinical trial.  Right now there are some new Parp inhibitors (separate from the ones we all know) that we are keeping an eye on for the future.  I also have a few more standard chemo choices - 4 or so - that we can try. 

Physically it just sucks because I am starting to get really bloated around the mid-section, ugh, and my cough is rough.  Morphine keeps it under control, but also keeps me in a state of perpetual fatigue, and so all the things I'm trying to get done - photo albums, cross stitch, letters, get pushed to the side.  It is a tough catch-22. 

On a positive note - while we just don't know what this chemo will do, based on the recent studies we are hopeful it will knock the cancer back and bring me some physical relief.  My doctors seem to think it will - so I am going to go with that .

I'm still fighting this like a girl, and will do my best not to disappear on you guys!  Have a great day everyone!

Susan

Hi Suze, thinking of you, lots of love.

I am so nervous.  Had a 6 month PT/CT Scan yesterday.  The Contrast gave me the runs, but otherwise the test was uneventful.  Find out the results on Tuesday afternoon.  Please keep me in your prayers.  All of my TN sisters are in my daily prayers.  God Bless one and all.

((((Suze))))

Ksteve - many many many of us are on the no scans without symptoms schedule. My onc just does a bllod draw before each appointment. I was on a 3 monthly schedule and now on 6 months.

Guygirl - will be thinking of you. I had a CT scan before tx only and had the same problem with the contrast. I barely made it back to the house before it all came flushing out. I was literally running up the stairs to get to the bathroom!! Why the heck don't they tell you this might happen. I only live 5 minutes from the hospital - imagine if that had happened in the car.

Lisa - emotionally, I found this time before tx the hardest.

I don't post very often - I'm leading a pretty boring life, but read every day and feel like an old timer on this thread. I am down to a handful of threads in my favs, and this is the only one where there is ALWAYS activity.

Lisajcj,

I'm sorry you have to join us, but you will find some wonderful friends here. I have researched and tried to learn as much as I can about my disease and gone for second and third opinions when I felt unsure. My sister has been a tremendous support to me as well as my grown daughter.  I have used distraction as a positive coping tool -I play Mahjong and Angry Birds on my phone, sew cat beds, read books, and watch movies or some TV shows!)  and relax to some guided meditations (check out Bellaruth Naperstak on line - free download. I have also taken advantage of the free counseling at the hospital.

bak- I'd go with "both"!

Bak, great news!!

Suze, oh I am sending you love and strong thoughts.You are a brave and wonderful woman.

I've been having back pains, in the ribs,  for about two months, and lately, freaking out because the pains are still present. Today, I finally went to my GP and he put his finger where it hurts in my back, and said he thinks it is connective tissue not bone. I was hugely relieved, but we are not totally out of the woods. I'm going to try Celebrex for a week and if that doesn't make the pain vanish I'll have to suck it up and do a bone scan.  

Jazz thanks

Bak, congrats

Suze....sending you good thoughts for a turnaround response with the Halavan.  I like the positive attitude from both you and your Drs.

Bak....wow, what a terrible mistake, but YEAH for your results.  I am still available for any Tomo discussion.  I am in Seattle so could meet you for coffee?  The drains are the worst.  I hope you get yours out soon!

My MO believes in scans and I like that.  The scanxiety is terrible, but hearing good news makes it worth it.  Each and every twinge would probably make me ask for one anyway so nice to know I have a schedule for them (every 3 months for the first couple years).

My tumor did hurt as well.  Not at first, but right before diagnosis every arm movement that brushed over it sent a throbbing pain down my arm.  At least that's how I remember it.  It seems so long ago.  Treatment or cancer, which one messes up your perspective of time more?   

To all the newest members of the family.  Welcome......:)

I just had one week off of treatment and it was great.  Good energy and my cold finally went away.  Back at it this Thursday.  The good news is I only have one more month and I'm done. Now if we can just make this one stick.  I would like to be done for a nice long while!

I hope everyone is enjoying some festive spirit! 

Inmate-would love to meet for coffee! Still kinda lazy right now from surgery, but I will be up to it soon!

Bernie Ellen-Sorry about having to go through scanxiety. We are here waiting for results with you, with fingers and toes crossed!

Thanks for all the congrats! I don't think it has totally set in yet, but my bs and mo were practically doing back flips! They were very upset with the mixup but they reassured me that the lab retested everything and matched up the cell types and such.

My mo also does blood work, they told me that it was just to check wbc.  My mo told me that with TNBC the tumor markers are not accurate.

Suze35 praying for you that your new meds will kick cancers ass!

This board has been so busy, so congrats to the ones with good news and hugs to the ones who need them.