Calling all TNs

rily - as per my point above, I had my onc appt. today.  My doctor told me that I've now reached a milestone because I finished chemo almost one year ago. Hang in there! 

Hi riley702

Just today I also found out that I am weakly progesterone positive 5% (not 2% as was previously told).  A re-test is still in the works, but the prior addendum reads at 5%.  At what percentage can one become hormone positive?  I still consider myself a 99% TN, but was a little happier that maybe the aridimex I have been prescribed is worth taking.

I finished Taxol on 28th December, so it has been 16 days today.  Has anyone experienced a strange sort of sensation on their skin 1.5 - 2 weeks after treatment?  I can't even explain well, but it feels like every now and then, I have these feelings on my skin in areas, where the goosepumps or something gets activated.  The nurse said that it is not neuropathy as that will only be on fingers and feet, toes, etc.  She said it could be my hormones, which is scary.  It is as if my body is defending itself from something.  I am wondering - since the chemo drugs works on our skin, hair, nails, etc., maybe the skin layers are getting back to normal or something.  Has anyone experienced such strange sensations? It happens on my calves, shoulders, arms several times during the day.

Riley - are you taking any anti-hormone therapy for your weakly positive ER+?

Lovelyface, I started my 5 years of Tamoxifen on Jan. 1. My medical oncologist was a bit dismissive of my questions about being weakly positive, saying "if you're positive, you're positive, and should take it (the Tamoxifen)." I talked it over with my surgeon, because he's easier to talk to, and he said that generally, tumors that are between 3-5% hormone-receptor positive do benefit enough from the Tamoxifen to outweigh the SEs, and urged me to go ahead and take it. He said if I have bad SEs, I could decide if it was worth it to me to keep taking it. So far, I haven't noticed any SEs.

It IS a little odd that my surgeon is the warm, fuzzy one, and my medical onc is great but can be a bit prickly about being questioned.

ETA: I still consider myself a TN, too!

I got my final path report when I went for my surgical follow-up. Nothing really new in it... just a more descriptive analysis of what I already knew.

Me too, I am blank most of the time.  I do have chemo brain, as if menopause wasn't enough to destroy my memory.

MBJ - maybe you are right, maybe it is the hair follicles in the skin which is trying to sprout, that's why I have those sensations.

riley702 - How nice that you started your Tamoxifen on Jan 1st.  This way it will be so easy to remember when you count your years - every new year will feel good as the old one passes.

I will be starting Aridimex pretty soon.  I had heard that there was no generic, but I just picked mine from CVS and there was a generic for this.  I just paid my usual $5 copy.  I was very happy about it as I had expected to pay large sums of money for this prescription.

I just came back from doing a CBC, Oncology panel including tumor markers.  I am a little nervous what if those tumor markers are off, of the baseline?  I heard these tests are not really 100% true indicators, and that they could be off for other reasons as well.  I think I will get the results via mail next week sometime.

Is this the one you meant?http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html 

Becky

Lovelyface:  You will start growing hair in the places you don't want it first before growing hair on your head, so I am thinking this must be it.   You are on your way!  I am glad that the new drug won't be a financial burdern.  From what I understand about the cancer markers they are just one small way to try and detect cacer and they aren't very reliable--Better to keep track of how you are feeling,making sure no other lumps appear, and keeping very in tune with what your body is doing.  They ran all sorts of test on me prior to me finding a lump and I showed nothing at all!

titan:  Chemopause/menopause--call it what you want it just stinks!

congrats on your good checkup Sugar...I had my ultrasound and mammo. and they were good.  The lump on my scar is either fat or fluid, BS took a little out today and will send if for analysis but thinks it looks ok.   I have developed lymphedema... not too bad, but it is there.   I have an app't next month with and LE therapist.... the gift that keeps on giving.... geeeez

Hi! ebann,

Today, BP 177/102, and was put on a diuretic, but able to have Avastin treatment.   High blood pressure is a likely side effect of Avastin, according to Clinical Trail E5103.   Always something.

My blood pressure is always in a normal to optimal rage but yesterday I checked it myself at the grocery store on my way home from my checkup.  It was very high...higher than I've ever seen.  At the end of getting my groceries, I stopped over to the pharmacy and checked it again. It was still elevated but not as high.  When I was pregnant, the doctor wrote "white coat" on my file.  My BP has a tendency to go up when it comes to checkups and stuff.  Nervous nelly here!

Throwing in my 2 cents in just when u think u know everything the ball drops.

I was told TC (taxtoxere(?) and cyctoxin) was the best thing going for us TN's. I am just confused because I don't see all of us taking the same amount of treatment some take 4 and others take 6 so it's hard to predict progress.

Onc told me that we will be the first group of TN with the most survivors. So that's something to smile about. Focus on getting to the three yr. mark and re-claim your health! We can do.

sugar77- my heart beats fast everytime I see the DOCTOR now!!  

I had IDC & DCIS both in the same breast, and had a total of 8 treatments, 4 AC/Cytoxin and 4 Taxol.

Mine was invasive and I had four rounds of TC.