Calling all TNs

99Sporty

I just went to that Gaila Fund site and ordered one too- so many beautiful choices!  Thanks for the tip.   I got a care package from the PA Breast Cancer Coalition that had a flyer for a scarf maker as well, I need to go back and take a look at that.  Thanks also for the tip on italian ice.. we have a place called Glaciar Flakes  with about a gazillion flavors- guess that gives me a good excuse to try a few.  Of course December 30th in PA is not the optimal time for icees, but what the heck!

I love hearing about the tumors that shrunk away to nothing during chemo!  I'm so hopeful that is my result as well.  I'm just ready to get started.  So even if the tumor shrinks away to nothing some of you still have had MX?  at this point my docs are still saying lumpectomy if it shinks even a little bit. 

Today I'll be doing some shopping and running around with my 3yr old.  Usually it is fun if it is just one of the kids.  I have 2 boys, 3 and 5..  together they are sometimes torture - but one at a time is usually a lot of fun.  I do not however look forward to traffic,rude 'holiday' shoppers and long lines

mitymuffin

Ladies, have you seen this study on survival after lumpectomys vs mastectomys? http://www.webmd.com/breast-cancer/news/20101217/breast-conserving-therapy-better-than-mastectomy

My favorite sentence says: "Still, both treatments work well, with about 93% of 62,770 women who had lumpectomy followed by radiation -- and 87% of 51,507 women who had a mastectomy -- alive more than four years after diagnosis." 

About Avastin: Maybe there is hope for it being approved for hormone-negative women, according to the articles I'm reading. Also I've read "Actually, the revocation is being considered under rules set up in the early 1990's, well before the new health care law " (New York Times)  though it is certainly money driven and I think the insurance companies just don't want to pay for it. 

MicheleS

hi eveyone! haven't been here in a while but you guys are always in my thoughts!

xxoo

mitymuffin

LauraJane, I love the descriptions of your new room colors. A new start for the New Year, and may it bring great health. I hope you are continuing to feel well.

laurajane

Thank-you Mitymuffin- Our hair is very similiar. I guess I need to change my pic too! You look so cute!

MicheleS- great to hear from you.

MBJ- The integrative doc I saw at Sloan Kettering told me to not take ANY antioxidants or Detoxifiers while on chemo. I did take them when I was on Taxol not during just days before and after. My head is spinning on what to do. I would love to take Milk Thistle which is in the Liver Tonic I was taking but now I just don't know what to do so I took his advise and have not taken anything other than what he suggested which is the Mataki D and a multi with no copper. he did say that after chemo I should bust my system like crazy. What did your integrative doc suggest while actually on chemo? I know you sent me that list but I couldn't understand what to take when?

Anonymous

LJ- my doc's advice was the same--- nothing during chemo or rads. Period. Remember, you are paying for this advice!

jenn3

I was told not to take supplements during treatment (chemo and rads).  From what I understand the chemo and radiation is in there killing all of the cancer cells (and some).  By taking supplements it stops or hinders the chemo and radiation from doing what it's suppose to do.

cmksocal

I was told not to take MEGA does of vitamins/supplements during treatment.  But the regular daily dose of vitamins, milk thistle etc was fine.

 Colleen

lrr4993

I was told that radiation and chemo work through oxidation.  Thus, taking antioxidants can cause them to not do what they are designed to do.  My doc said a multi vitamin and food level antioxidants are fine.  Just not the supplements that greatly increase the amounts in your system.

Not all supplements are antioxidants.  You may want to check with your doc about specific ones.  I really want to take folic acid for my hair, but am set to start rads after new years.  I have read that folic acid is not an antioxidant.  Going to check with my rad onco.  Hopefully I can take it during rads.  Really want my hair back ASAP!! 

Luah

mitymuffin:  Thanks for posting that study.  I know my BS said she considered Lx and rads to be a more aggressive treatment than Mx, even though many see it the opposite.  And I agree, the best news of all is the high percentage of women who are alive and well years later.

MicheleS

LJ- mine said nothing during but has been supportive of my CAM supplements now that I'm done.  (I take: aspirin, coQ10, boswellia, resveratrol, ecgc, curcumin, calcium, fish oil, and vit D.)

mitymuffin

Luah, That is an interesting statement by your BS. I too would have thought the opposite, but being someone who had a lumpectomy, I'm glad to hear it. 

RE: Supplements. I let the Sloan Kettering website be my guide on each one.  http://www.mskcc.org/mskcc/html/11570.cfm

riley702

double post - sorry!

riley702

So does MX with rads do even better? (hope, hope, since that's what I did). I'm very happy I got the Avastin right before they put the kibosh on that. Maybe it will help me down the line.

MonikaV

Hi Ladies,

How is everyone doing? I have some news to share. I got the results from my bone scan and no evidence of cancer!!!! Yay! My onc said that as of this right moment I am cancer free, but not to let that fool me because I am TN chances of recurrence are high.... I am aware of that but for now I am jumping for joy! 

Also if you noticed .... I have changed my profile picture. This professional photographer in my area lost her best friend to cancer ... So every year she invites cancer patients and give them a photo session for free. I was excited to see that my hair is growing faster than I thought. 

Have a great day ladies

laurajane

Wow! Monika what a great photo! You look beautiful and happy!

Lovelyface

Blindsided, MBJ & TifJ - thanks so much for the tips of taking Claritin, I will go take some right now, thank God I have some.  My cough is out of control, I finished the 8 or so antibiotics they gave me. I was certain it is a side effect of Taxol since the antibiotics didn't take care of it.  I have had a slight temperature all day today, just like 99.5 or something.  It says in the directions they gave me that it needs to be up to 100.5 then I should call them.  I hope the Claritin takes care of the cough and the temperature.  This is my second last Taxol, I am getting worried about the last one.  I have been feeling a lot of neuropathy this time and have been just lying down all the time.  I am giving myself at least 4 days of just lying down, doing nothing, but eating, lying and showering, that's it.  Tomorrow would be the 5th day, let's see how it goes.  Thanks all.

Swanny

All - thanks for the congrats on finishing rads.

mitymuffin:  I did get tired the last week to week and 1/2.  Couple of nights I went to bed at 8:30.  Last week I started walking slower around work which to me is a sign of me being tired.  They say to watch the skin closely for the week after finishing because I could still have problems - and of course still use the salve.  If after a week, no problems then they say I should not have any problems.  For me rads were so much easier than chemo. 

Next week is see the BS and the Onc for my follow ups.  Mamo and Pap in March.

Hope everyone is enjoying the holidays.  It is cold 14 degrees outside. 

laurajane

Swanny- congratulations on finishing your rads. I'm so glad it was easier on you.

kelben

congrats. Monika and Swanny, thats a real nice Christmas present. 

I will be getting my first mammo. since surgery.  Only one to do now so thats a postive.  being TN, what will they treat me with if they find something?

ChrissyMH

Hi MicheleS and all,

Michele - I couldn't help but notice that we have nearly identical pathologies.  I was diagnosed on Oct. 12, 2010, with 1.5cm Stage I, Grade 3, 0/7 nodes, ER-/PR-/HER2-.  I had a lumpectomy.  I had my first of 4 TC infusions on Dec. 3rd.  My second will be Dec. 23rd, followed on the 24th by an injection of Neulasta because my WBC count fell lower by Dec. 16 than it was on Dec. 9.  I have had severe bone and soft tissue pain, mouth ulcer, and now painfully cracked skin around a couple of fingers and am nearly 95% bald.  I am immobilized with fear for the future - being TN and having no relatives with BC, and having run 5-6 miles per day for the last 30 years and 4 months.  It appears that you've survived two years - wonderful!  Any information or advice that you would be willing to share with me about your experience pre-, during and following this chemo-nightmare would be truly appreciated.

Take care.

MBJ

Amy:  I hope chemo kills all of your cancer, but unfortunately, the cancer can come back, hence the need for surgery as well.  Best of luck and have fun Christmas shopping--it can get pretty crazy out there this time of year.

MBJ

Swanny:  Congrats on being done.  Take it easy and give your body some time to heal.

Laurajane:  My Onc and Integrative Dr. told me nothing the day before or for 2 to 5 days total during chemo but then everything was fine after this.  I now some Oncs say nothing at all, however, my dr's told me chemo only does it's job for about 72 hours and then it is just waste in the body and you are trying to get it out of you as quickly as possible.  Do what feels right to you and your body.  I had some of the best doctors in the country who are triple negative specialists and my onc has over 37 years experience!  I was lucky to have them as they are also some of the moste expensive doctors in the country, too.

Lovelface:  I hope that the Claritin works for you.  Keep a close eye on your temperature, and at any sign of it going any higher, get yourself to the hospital!  Hugs.

MBJ

Monika:   I'm doing the Happy Dance!!!!!! Wahoooooo!!!!!

laurajane

MBJ - Thank-you. What was recommended that you take to remove the excess? Since my chemo schedule is day1 then day 8 and then one week off. I dread having to go back again this Tuesday. 

mitymuffin

Swanny,  Thanks for the words on your experience. I'm glad to know I'm not alone in the fatigue.

ChrissyMH, I'm sorry you have to go through this right at Christmas. I hope you have some supportive family and/or friends. Its a tough road but most of us on this board have been through it.  Just take it day by day. I posted this link the other day, but I'm posting it again just for you. Take heart: http://www.webmd.com/breast-cancer/news/20101217/breast-conserving-therapy-better-than-mastectomy   Notice the part where the study says

" Still, both treatments work well, with about 93% of 62,770 women who had lumpectomy followed by radiation -- and 87% of 51,507 women who had a mastectomy -- alive more than four years after diagnosis."

Claire82

I wouldn't use this one study to make my decision. I think talking to all the doctors involved and using their experience to make your decision is best. There are so many varibles to these studies.

MicheleS

Hi ChrissyMH! Welcome!  I was treated a bit differently than you but I will echo what Claire alluded to above... there are so many ways to go about treatment, you need to do what you and your MD feel comfortable with... It feels surreal that are asking me for insight.  I feel like I was diagnosed just yesterday!!  Sometimes I think that chemo is like childbirth.  It is so haaaaard and painful while you are going through it but then you forget.  I *know* that I was really, really sick but, honestly, I can't really put all of the details together.  And, that's OK.  With that said, I worked throughout (sort of) and was able to take care of my kids/family.  I know that right now, everything may seem overwhelming to you, but it gets better.  You'll even wake up 1 morning and cancer won't be the 1st thing you think of! Really!  Finally, the stats may seem bad (especially when you read about how much better they are for ER+) but most of us will be just fine. 

xxoo

Claire82

I feel the stats are with us TNS girls. When we hit 5 years - we are better off than them

Notice i said WHEN... not IF

Titan

Agree Claire!   Although this is just one study...it is good to know for those that had a lumpectomy and for the women that may question their decision..that this study gives them a basis for knowing that they made an OK decision..I had a lumpectomy (on the advice of my doctors)...I KNOW that a lump and rads equal a masectomy..but sometimes..reading on here..I questioned my decision...

It truly is a personal decision...but even so you want to know you made the right choice...it's good to know that either a lump/rads or masectomy .whatever you choose is the right one FOR YOU and quite possibly the same results as for as reocurrence...I like that! 

Oh..and Monika..tell us who that guy is with you..pretty cute!