Calling all TNs

Lovelyface,

I hear your heart cry --- you are not alone.  This time last year I was at the same point you are now... I had horrible SEs and was not ready to start Taxol.  I did 2 doses of Taxol and had very bad and unusual SEs so they switched me to Taxotere and had even worse SEs I'm sorry to say.  Some have great success... but I didn't.  The onc. decided to stop my treatments.  I really had to trust that God knew what was going on and rest in that. 

However, Dec. 1 will be 1 year from my last chemo and I am doing well. I even was able to get a haircut last week!!!  (Hurray for new hair!)    Some SEs do hang on and I was told recently to give myself a year to feel better.  I didn't do that, and last year - I over did a lot - even broke a rib (just from painting a cabinet).  One of the lasting Side Effects that they didn't warn me about was that bones can be weakened from the chemo!  A bone scan showed no bone cancer (which was my big worry) and I healed well, but definitely took life a bit easier after that. 

I just think some of us really have a harder time with the treatments than others.  But no matter what you are going through now, I can tell you that a year from now, it will begin to fade.  You'll remember, but you won't be experiencing the same things. 

I will say a prayer for you!

Vickilynn

Hi all found out I am on a lottery for the Parp. Drag. Yup just figured out how to add the smiley face! Kind of fun. They have decided to start the gem/carbo on Wed. Says it can't wait to win the lottery. Although I plan on winning the lottery soon. I guess it is undecided whether I am stage 3 or 4 Ha! with all of my positive lymphnodes they had assumed it had already mets. Well, my positive ass will not allow it. LOL. If I sound a little nuts it's because I am. The rollercoaster our docs, oncs,BS's put us on is enough to drive us all crazy don't you think? Still have my final drain, 3 weeks since surgery but I have to much fluid still 35-40 ML's a day. I'd rather keep my drain until it's time. There is plenty of time I try and believe. Still I had a great day. Today was a beautiful day and looking forward to tomorrow. Start the new landscape job tomorrow. A fun one using lots of cool rare plants. I hope everyone has a great evening.

Laura 

lovelyface- welcome to the boards and I'm sorry you had to find your way here... The women on these boards are wonderful and you will find that you are not alone in your emotional and physical symptoms.  The steriods and/or emotional roller coaster probably have you eating foods you wouldn't normally eat or more than usual.  I had terrible SE's from the chemo and it seemed I got every one there was to get.  I know you're having a tough time, but you will get through it.  (((hugs))).

Wow!  Titan, I echo what others have posted here--so sorry to hear about Pauldingmom (Lisa).  I will PM her.  I have a dear friend going throug it, too.  Cancer sucks.

LJ: That is correct:  Not stage 4!  That means there is hope.  Sorry there is a lottery for the Parps.  Is there anywhere else you can go to participate? 

Finally got to have my PT today.  4 1/2 months later.  Guess it's better then nothing.  Still fighting so that I can get  it until January.

Yes, Claire, I did!  I have a bit of swelling in the back--told my dr months ago and he said it was nothing.  She did a lot of stretching and measuring.  When she was done she wrapped me up and sent me home.  I go 2 x a week while they battle it out with MediCal.  It's great--loosens up what's tight.  I had a substitute today because the other PT called in sick and the one that I saw before is better at it and more experienced.  I go again this Thursday.  Just want to get full use of my arm again.

A smile for all of you this morning! I hope this doesn't offend anyone it sure made me smile when I read it this morning.

Chapter #1 A buddhist monk goes to a hotdog stand and asks the vendor "Make me one with everything"

Chapter #2 So the buddhist monk paid for the hotdog with a $20 and the vendor put it in the box. The monk says, "Hey, Man, where my change?" and the vendor says,"You should know Master...All change comes from within...".

Titan and Heidi:  I know exactly what you mean.  I've been in a funk this week too.  Just stressing over little aches and pains.  Always terrified the other shoe will drop.  So conscious of the fact that 1-3 years post diagnosis is our big risk period.  Feel like I'm entering a dark zone. Can't talk to DH about it - he just doesn't want to go to negative thoughts and, frankly, neither do I.  Wish I could switch it all off.  Really sucks.   

I don't know where you are located, but they are accepting enrollments, not lotto at Stanford RIGHT Now, and will take up to 80 are at 56.  call Meredith Mills 650-724-5223.  Parp #3 1-877-827-3222,  Randomization starting at UCSF, Julia 885-7331, Diane Davies  UCSF 353-7857 (all 415)

I-Spy trials 2.5 cent. needed call Julie, Phase 2.   I think this needs mets.

Sorry if this is reduntant or not right for you, but I wanted to give you some info I have received recently.  Good Luck! k

Lovelyface, are you taking emend, dexamethasone and prochlorper?  I also think Xanax or Lorazapam helps alot.    Hang in there, my thoughts are with you.

Yes, I take Emend, dexamethasone, Lorazapam and compazine.  Last AC, I did not take compazine as I think it made me feel even sicker.  Also did not take dexamethasone, also made me sicker.  Depended on Emend for 3 days and then Lorazapam, which made me go to sleep within 5 minutes of taking it.

Fighter_34 - I am crying right now, as your email has made me feel a little better. Ever since I heard about PauldingMom, I was freaking out.  I made an appointment with my Oncologist to see me sooner than Monday, as I have a million questions to ask him.  I did not have any node involvement, thank God.  Does anyone know anything about TN's who try to preserve their breasts versus having bilateral mastectomy.  I have done a lumpectomy but have issues in my right breast, which did not have cancer, but scary cells. They recommended yearly MRI's to check.

If anyone has information about how to decide on having bilaternal mastectomy - please give me info.  I feel good about my cancer breast which has clear margins and will have rads.......but what about the other one which has all these weird altered cells?  What to do? If one goes, they both go.  Like I said I have a million questions and I don't know where to get my answers.

Having TN,  what assurance is there that having bilateral mastectomy will prevent this from recurring somewhere else?  I am so confused.

My love to all you lovely souls!!!!!

This may sound a little morbid. I don't want it to, but I've been trying to figure out to explain what my BS said when the decision was lumpectomy or mx. If I opted for the lumpectomy, my chances for survival were no more or no less than if I opted for an mx. Because you will be checked very carefully every 3 months for the next couple of years, the chances of them finding the recurrence in your lumpectomy breast are high. At that time you would choose an mx, and have the same survival as one who opted for the mx right away. Did I explain that ok? Your choice of a lumpectomy didn't hurt you at all.

Grr

OK feeling blue too.  I was just told as I am (so far) node negative, that I can't get radiation if I have a masectomy. What?????????????? It increases my odds by an additional 10%.  Who made that decision.  Only radiation with lumpectomy. to equalize the odds.I am waiting results on my BRAC1-2 tests to decide about masectomy.  I was so concerned for you Lovelyface, it sucks that they can't find something more tolerable.   I called my docs to see if they have a triple neg support group and was told no, not enough of us.  What????  Thank God for this and can you try xanax?  K

Pinkpee- Thank-you. I completly forgot about the Xanax prescription I got last May. Thanks for reminding me. I was originally scheduled for radiation after my masectomy. I was told to have chemo first instead because of all of my positive lymphs. Now I am just kind of lost. I am going for a second opinion on Friday up in Indy. I pray it's a more caring onc. THe one I have now is so cold and non supportive to say the least. She has 10 minutes and if I have any questions they are basically to be saved for next time.