Positive discussion about TN

Scoobydoo

No from what I understand Phase 1 already started.  I may be able to get into Phase 2.  Again I am trying to get all the info I can and see what we can participate in.  I like all of you want to do whatever we can to increase our chances of beating this thing.

Anita

angelsabove

Anita,

Thanks so much. Yes maam that is the plan....BEAT THIS!!!! Just keep us posted and let us know.....

May God Bless Us All

NavyMom

Hi everyone!

Another positive negative chickie here.  I really love this group.  Very positve gals. A special hello to my new friend Scoobydoo.  I will start my chemo on Aug 18.  (TAC) one treatment every 3 weeks for a total of 6 treatments.  Anyone elso doing TAC?  Thanks in advance for anyinfo you can share. It is getting close and I am getting a little nervous.

Navy

jezza

Hey Tassiechick...I am originally from Tasmania as well.

Sending you a Private Message!

jezza

Indomitable1

NavyMom: I have had 4 of 6 TACs. Make sure you check out the Tips threads under Chemotherapy-Before, During and After. They've got some great tips. Days 2/3-4/5 are the worst for me and the fatigue may be cumulative -although my course has been confounded by a recent infecton near/at the port site. I have had to take Neupogen after each round. My insurance does not cover Neulasta. BTW, why did you choose TAC vs. AC/T?

And here! here! to making sure we beat this thing.

Glad to find other positive negatives! Thanks CarolinaChick.

carolinachick

It's so good to hear all the positive energy out there.  While none of us would have chosen this particular journey, there are blessings to be found along the way.  And the plan is for all of us to be around five years from now, talking about how good life is!

Debonthelake

That's my plan Carolina Chick and I'm sticking to it.  It feels wonderful to have my treatment behind me now.  That is except for the exercise and low fat diet of course.  But, I'm pretty motivated to keep that up so it's not a problem.  It feels great to have returned to a new normal.  Good luck all. Oh, I got my first hair cut today.  It was just a shape up and it's still really short but it's thick and it's a start.

carolinachick

I agree - I'm more motivated to eat well and exercise than ever, since that's the only "medicine" for us TN's.  Congrats on your haircut, Deb!  My hair is now about 1 inch long, and I'm looking forward to reaching my "first haircut" milestone soon!

Scoobydoo

Update:

I talked to the lady in charge of the BC TN vaccine trials and she told me they are about to start the trial to see what it does to the immune system.  She told me to contact her when I am a little more than halfway through chemo to see where they are in the trial.  She said they are extremely optimistic about this vaccine.  Right now they have enough people for this first trial, but she said by the time they start the 2nd phase I should be able to participate. 

I will keep all of you updated when they open the phase 2 trials so that if you want to particpate you can at least see if it is something you would qualify for.

Anita 

pinkdove10

Deb- congrats!!1 hope to be there soon

Anita- thanks for keeping us updated.  but i have my doubts that in India we would be having this kind trial going on.  my onco will be my best guide. keeping my fingers crossed

Uma

angelsabove

Anita,

Thanks for the update. Sounds good that she feels extremely optimistic. Let us just hope and pray.

tibet

hi Anita

My onc had tried to email Dr. Josef Baar but did not exceed. Is it possible that you give me the contact info of the nurse and I can ask my Onc to see if I can participate from Europe? I live in Europe. You can also Private Message me with the info if possible. Thanks. alex 

NavyMom

Hello everyone. Just taking a minute to check in and say Hi!

Indomitable:  My Onc said the stats for AC/T were about the same as TAC.  She recommended TAC and since I trust her judgement I went with TAC.  Had my first Tx on the 18th.  Having problems sleeping (?steroid SE)  and had fatigue on day 4 and 5.  Otherwise I feel pretty good.  Actually went out dancing (swing & ballroom) with DH last night!  Joints/back feeiling a bit achey today but going to yoga this morning anyway.  For me, exercise is like therapy.  Makes my body know its alive and helps to keep my mind positive.

Have a great week everybody.

Navy

carolinachick

Navy - It sounds like you're handling the chemo very well.  I was only able to walk during chemo, but found that the fresh air helped energize me and clear my mind. 

I hope everyone is doing well!

jmcoop

Hi, I was just diagnosed with 8mm idc and small amount of dcis.  MRI showed no other tumors and the other breast is clean.  I am grade 1, stage 1, well differentiated, which is apparently unusual with a TN dx. I still need to have the lumpectomy and sentinel node biopsy.  The TN scares me after everything I have read about it, but I have 2 kids, 12 and 8, and need to beat this thing.  Also, my doctor doesn't seem that concerned about the tn since the tumor is a grade 1.  I would love to have someone to help keep me positive, and vice versa, since it is hard to keep your mind from going to the worst case scenario!

Indomitable1

jmcoop- sorry about the dx but it is great that the BC is at such an early stage. Keep reading the things in the TN threads (low fat diet, this, etc) to try to make sure that you've got this thing beat. I know what you mean about wanting to be here for your kids. Mine are 23, 15, 11, and 8.

Navy-thanks for the info. My onc and Dr. Olopade at Univ of Chicago said the most important things were to get the adriamycin/taxane and cyclophosphamide on board. Glad to hear that you're tolerating it so well.

fmakj

Hi All!

JM - The best thing that you can do is to keep to your regular activities!  I know it is hard and in the middle of nowhere you will be hit with panic attacks! We were all there at some point (and some of us still are)!  I try really hard to be as positive as possible. It really wasn't what I was expecting this summer, but I choose to believe that this is but a small bump in the road! I am nearing the end of my radiation txs # 22 of 30 down. My onc was against chemo for me - even though almost everyone that I come in contact with with TN has had chemo - so will have to trust him on this! This site is wonderful and can be scary at the same time (I thought TN was a GOOD thing!!).  But these ladies will help you through the tough times!  I have 3 daughters - 18, 15 & 13 - and am planning on being around for their weddings and children!!  Take care.

Be Well All!

chinablue

Hi Ladies,

Looks like I am a TN.  I am going to see my oncologist on Monday to find out what he says about treatment.  My breast surgeon told me after he went over the path report that he thought I would most likely get 8 dose dense treatments of AC/T, but he was not so sure about radiation. I have started wrapping my head around the chemo, but I am worried about the radiation.  I have had a unilateral mast with diep reconstruction.  I am concerned the radiation will ruin my foob. 

Is there a standard protocol for TN?  

DX 7/1/09, IDC, DCIS, 3.3 cm, Stage II, Grade 3, 4/24 nodes, ER-/PR-, HER2- 

angelsabove

Chinablue,

I am not sure if there is a (set) protocol. I had my surgery first and am currently in treatment now. I was started on 12 weekly taxol which I will do #12 on Monday. Then I believe I will do 4 of fec once every three weeks. I will do radiation after that. I am sorry u had to join this club, but there is lots of great information here and I am learning lots of love and support. Oh yea...I did not have roconstruction yet. I chose a double mastectomy.....I know my plastic surgeon said that immediate reconstruction was a risk for infection. I was  VERY large breasted prior to diagnosis and he said that large breasted women tend to have lots of fluid which could lead to infection....SO I will do that later.....

May God Bless Us All

chinablue

Angelsabove - What was it like to take taxol?

chinablue

OK ladies, I am confused by the types of treatments out there.  Anyone know more about when the following treatments are prescribed:  FEC, AC/T, Taxol, TAC. 

angelsabove

chinablue,

I did Taxol pretty well. It did make me tired. I had the infusion on Mondays. The day of the infusion I was really sleepy due to the benadryl given. They did have to give me extra benadryl and steroids because the 2nd infusion I broke out in hives on my left arm. The day after which was Tuesdays I was LOADED with energy. I assume that was from the (double) dose of steroids. Wed. Started to feel tired and ached. Thursdays have been yukky.....Taxol seems to make you feel kind of like you have the flu. With the aches in the body. I also felt as though I had something stuck in my throat. My Onc. said that it was acid reflux caused by taxol. Told me to take Pepsid or something for acid reflux. I have not had much nauseau.

 I have one more on Monday. That will be #12. I am worried about the ones I get after that. I too get really confused about all the regimens. I will see my Dr. on Monday prior to my last infusion of Taxol. That is when she will explain what I will do next. I am almost certain her nurse told me FEC. I do remember nurse mentioning the (E) part was easier on the heart than the (A)

 Maybe someone else will come along and explain that to us better. I am not real sure. They did tell me that you could get mouth sores with taxol. I was very fortunate and did not get those. I do have LOTS of hot flashes. They said the chemo will send you into menopause.

May God Bless Us All

cwrightrn

Chinablue--to answer your question: FEC stands for 5FU, Epirubicin, cytoxan; ACT stands for adriamycin, cytoxan, taxotere (or taxol) and TAC is the same as the prior just a different order.  Hope that helps......there is a homemade mouth rinse that helps with mouth sores (salt/baking soda/water) and glutamine (over the counter powder) that helps with myalgias/neuralgias which are a HUGE side effect of the taxane drugs.  Hang in there....

chinablue

Why is it so important to test for BRACA1 or BRACA2?  

What is a CT scan?

Can a PET scan really see any or all the cancer a person might have? 

chinablue

Ooops I just searched this website and found out about PET and CT scans.

carolinachick

Chinablue - If you have a family history or were diagnosed at a young age then it is important to have the BRCA test.  A positive test can change the course of treatment and follow-up, since that would indicate a higher chance of recurrence, as well as a possible increase in the chance of ovarian cancer.

In terms of mouth sores, I found Biotene toothpaste and mouthwash to be a great help.  I made it throught taxotere and cytoxan treatments without any mouth problems.

chinablue

Hmm!  My doctor suggested that I get the BRCA test, but he said it would not change my course of treatment (AC/T, radiation).  

carolinachick

It may change your long-term treatment in terms of follow-up.  Also, if you are BRCA-1 positive you may want to have your ovaries removed.  I had a lumpectomy, and would have had a blm if my test had been positive (it wasn't).  Since you've had a blm, a positive test probably wouldn't change your current treatment.

Brie

Hello Ladies,

First time posting here. I am 44 years old. No bc in family hx. I had a benign brain tumor removed 6 years ago. Felt great and thought I had my quota of health problems. Then on July 27, 2009 dx with triple negative bc. PET scan came back with no node involvement. Brca1 & Brca2 negative. I am receiving neoadjuvant chemo then need mast (left breast) and rads. I had port surgery on Aug 19th. My first chemo treatment was Aug 27th. So far so good. No reaction during treatment. Only experienced a few SE a couple days after treatment. Next treatment (TAC 6Xevery 3 wks) Sept 17th.

bar62

Newbie here.

Hi everyone,

Does anyone have trouble with fatigue more  than 2 months out from Radiation? I was doing well with my energy levels, until my final  8 booster treatments. I had a week off for burn recovery after my third booster using a   Cream provided by my Radiation Oncologist, Aquafor over the cream,  and Vaseline gauze dsgs over the Aquafor 24/7 x 7days. I healed completely.

Total treatments  34 including the  boosters  with the last 8 delivering 20 more rads than my previous  26 treatments. Perhaps that's the culprit.

I was so much more energetic after my chemotherapy. I received  4 dose-dense A/C treatments  and 2  courses of  Taxol   instead of four  due to  severe neuropathy and edema.  I'm left with a glue like feeling which still lingers in my joints and  chemo brain; no complaints there, but I would like to feel more energetic.:)

 back soon,

 Any information will be appreciated v.v.v. much 

Take care and I hope everyone had a relaxing Labor Day. 

mina