Nicole

What a curve ball you have been thrown!  I am so sad you have had to join our group but happy that you found your own lump and took charge.  I agree with you, I think you would be Stage 2b but the Onc will confirm.  When your hair starts falling out, it can be a pain to deal with so I would recommend getting it clippered like Donna said and just go for the wig.  Most of mine came out between 2-4 weeks. I was able to continue working both times (I am battling recurrence as we speak) but did need a day or two here and there to get some extra rest.  Rest is really important.

 

You will find so much support, caring and love in this forum plus tons of wisdom so come back often and let us know how you're doing!

 

God bless, keep fighting~

Traci

 

First, thanks for your response and warm welcoming. Yes, I hear I'm "young" almost TOO much. It actually concerns me on how much I do hear it because I feel like if people weren't so oblivious on someone my age having breast cancer, they may have not blown me off when I first found the lump. Hopefully after all of this, I can make an awareness for other young women. I feel like majority of young women under 35 (even under 40) don't check themselves the way they should because they also think they're "too young". It's my goal to make it a point to have women of ALL ages be cautious of their bodies. I know I'm doing ACT, I believe I started with the C one. I'm honestly not sure, bc i think they switched up the original order after my lymph nose came back positive. I'll ask my doctor tomorrow. For nausea they gave me a fluid drip of zofran the day after my treatment when i went for my neulasta shot. The ER also gave my a fluid drip and I'm prescribed zofran which i was talking religiously while nauseated but stopped about a week ago when i was feeling better. I'll start back up the day of my chemo. Is Emend better? Should I ask to be prescribed that instead?

 Thanks for your response. my hair is SUPER long (roughly 18") I was actually wanting to shave it all before it starts falling so I can donate it. I actually set an appt for mon. My hairdresser set it up on that date so we can be alone. How many years before your recurrence? And did it just come back as breast or has it located to another area of your body? I'm so sorry to hear that. I fear that more than what I'm going through now.  

 

I am very sorry that this has happened to you, Cancer does truly SUCK. All Cancer sucks no matter what kind btw.

TNBC is very scarey for sure, but there are plenty of people here that have survived for years with all stages of disease. A lot of those people are here, some are gone and moving on with there lives.

 

I am going to try to remember some of your questions here, so if I don't get them all I am sorry.

You do not mention the Chemo treatment that you are on. Don't know if it much matters in regards to hair.

I did AC/T, my hair started thining by the second treatment. I chose to have my hair cut really short at first since it was just thinning. Then I one day said to myself, it hurt more to see it on my pillow and the lint roller then if I was to shave. So I did, and no regrets. It's only hair and it grows back.

 

There are a lot of side effects that can happen with chemo, among them is sleep disturbances. Gee as if we are suppose to be able to sleep under these cicumstances isn't hard enough. Don't be afraid to ask to doctors for something to help you. I asked for Xanax as it didn't seem to make me feel too groggy in the morning. Ativan is another one good for the anxiety, I took that b4 each treatment after about the 3rd one. Seemed as time went on I got more uncomfortable with the whole thing.

 

Do take all the anti-nausea meds that the docs perscribe, if they don't seem to be working or you are having problems with them please let the doc know so they can switch them.

I would suspect the aches were from chemo and not your cold. I had heard about taking Claritin for the 3 days prior to treatment would help and it did make it a lot easier. Glutamine was also a positive thing with the aches, just mixed it in my juice and it was o.k.

 

Mouth care is extremely important too. I had both ACT mouth wash for drymouth and sensitive mouth. Everything in there got so sore.

 

Lots of people are able to continue working, although they might be tired or dragging. Helps to try to continue doing what you used to, so you don't feel totaly robbed.

Listen to your body and rest when it needs it.

It's great that mom is spending a few days each treatment with you. It's alright to be fiercly independant, but recognize it when you need help too. Evedryone reacts differently to this, some sail through some don't. If anyone  offers to come and clean or cook, or give rides and stay during treatment.....graciously accept the offers.

 

I am sure some more people be responding soon, with a wealth of information.

There is also a thread on this site for young people diagnosed that was just started the other day. Maybe someone more computer savvy will post it for you here.

Your not alone dearheart, there are some really great supportive survivors and family members here. Sorry you have to be here Nicole. If you feel something whether physically or spiritually, there is always someone to share that very same feeling here.

 

United together,

Natalie

Nicole,

I am so sorry you are going through this.  I am not sure if I am understanding your pet scan right, but it sounds similar to my situation.  I had a pet scan about 10 days after my mastectomy and SN surgery.  They removed just one node which was negative the day of the surgery, but had one microscopic cell when tested further.  The cell was small enough that my SN was still considered negative (it was .17mm and a node is considered neg until that cell is .20mm).  My onc showed me my pet scan, which was technically positive.  The area where the SN was, was lit like a Christmas tree. It was lit between the two markers placed to indicate where the SN was.  He felt the area was lit because of surgery inflammation and not because the surgeon had missed a positive node.  I saw the markers and the lit area, and that is what I believe. My tumor was large, so I started at 2b.  I choose to believe that is the stage I was, although I know I was very close to 3a. 

Is it possible the lit area from scan is actually inflammation from surgery.  I was told (and I recall seeing it on this site) that PET scans are not as reliable right after surgery and for several months following radiation. BTW, my uterus was also brightly lit.  It was because I had one of my last periods while that scan was done. So, the pet scan does show more than cancer.

Chemo is different for everyone.  My first cycle was the most difficult.  I seemed to manage it better once I was more proactive.  While I was less nauseous with the last five treatments, I did get more tired with each one.  I was surprised to find that the fatigue does continue past chemo, but it is more manageable.  Just let yourself rest as much as possible.  Also, a friend of mine who had bc years me told me to resist the urge to volunteer for anything for two years.  Just take care of yourself.  I am nearly two years out and I am pretty much back to normal (keep in mind I had a trial drug for a year and then started reconstruction which was a process that keep me from being back to normal sooner).

Good luck to you.  Just do chemo one cycle at a time.  You may think you can't make it through, but you will one day be looking back on it.

God Bless you as you go through this.

Lori

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Nicole,

A couple more things.  Did anyone suggest taking Claritin the day before, day of and day after your neulasta shot?  I did, and never got the bone pain so many talk of.  I did have the body aches with each treatment, but they only lasted a day.  It felt like I had the flu.  I took some pain medication and tried to sleep through them.  I had chemo on Monday and found I was sickest Wed night through Friday.  I was really nauseous the first treatment, and I think I let myself get dehydrated.  I asked for fluids, which I got when I went in for the shot.  I also took the anti-nausea meds around the clock (zofran and lorazipam).  So, very little nausea beyond that first treatment.

I did get mouth sores the first time around.  I rinsed with Mugard (which I got from my onc nurse) several times a day for the first several days following chemo.  My mouth was tender those last five treatments, but no mouth sores.  I think you can also do your own rinse, with 8 ozs. water, 1 tsp baking soda and 1 tsp salt. Just swish and coat your mouth with it.

I drank a lot of Ensure during those days after chemo.  I just couldn't stomach a whole lot, plus I couldn't take much spice.  I never knew what would sound good to me.  It was difficult when people would ask what they could bring, and I really didn't know what to say.  What sounded and tasted good one day made me sick at the thought of it the next.  Just go with what you can eat.

Again, good luck to you.  So sorry you had to find us, but the ladies here will help you get through this.

Lori

 

Thank to those who suggested the link to young women with breast cancer, I'm going check it out now!

Nicole,

When my onc told me of the technically positive PET scan, he said his treatment plan wouldn't change even if it was a positive node (which I believe it wasn't).  I was going to do chemo anyway.  The rad onc may have done more based on the scan.  She was aggressive with the radiation because I was TNBC, and because there was no way to tell for sure if the node was lit because of surgery or because there was actually cancer. I was okay with that.  I wanted to throw everything possible at this, and while I could have done chemo differently, it was an aggressive course of treatment.  

How large was your tumor?  

Lori

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I worked all thru tx. So I think it is very do-able. But I only had 4 tx's of AC. I know another woman that had 4 AC and then taxol and she too worked completely thru tx. Like you, zofran was my anti nausea med. I pretty well sailed thru tx. I would have it on Monday morning and be ready for my normal Wed.- Sat. work schedule. I am a hairdresser, so did cut back on the amount of "heads" I was able to do. I would do 2 in a row, take a break, then 1 or 2 more, break again etc. I needed the breaks to regroup and keep energy going. Somehow I found the chemo very draining of energy. I did accupuncture as complimentary to maintain energy levels. I was a single parent, so did have to come home from work and "parent." [ daughters 9 & 13] I managed fine. A friend took me to chemo. Other friends made dinner for my daughters and I the days of chemo. Everyone responds to chemo differently. Hopefully you'll have an easy time and be able to manage it all with independence. It is possible.  Keep us posted.

I was dx in May, 2007 and found recurrence in June, 2011.  Ya, just when I thought I had this thing beat.

 

I was coughing uncontrollably for several weeks, thinking since I had just moved from FL to TX there was something I was allergic to.  Finally, after 3 doctor visits a chest xray revealed a mass in my left lung.  Biopsy confirmed it's the TNBC that decided to take up residence in my lung so I'm doing Taxol/Avastin every other week for as long as I can handle it. 

 

You will get through this, you are young and it was caught early.  God is on your side too.

 

Blessings,

Traci

My hair started falling out on Day 15. I was at work and had gone to the rest room. I was washing my hands and dried them. I pulled my fingers through my hair to try to "fluff" it. (I was born with thin hair so I am always trying to give it more volume.) Anyway, a little tuft of it floated through the air and fell to the floor. I was shocked. I thought it would all just fall out on the spot. But it doesn't happen like that. It's a gradual process, with more and more each day. At first, you can't even tell because you have enough hair left over and it still seems full. Eventually thin spots and then bald spots appear. I was most surprised that it "hurt" when my hair was coming out. If I was outside and the wind blew...the little bit of movement of the breeze against my hair caused my scalp to "ache". I felt the same thing when I laid my head on my pillow or leaned back in a recliner chair.

By about 4 weeks, too much had fallen out and it was hard to constantly be picking it off the pillow, etc. I went to have my head shaved. I went by myself. I was so embarrassed for my hairdresser to see my head. (I had started to wear scarves by then.) But she was SO kind and understanding and she gave me tissues because I cried the whole time she shaved my head.

I didn't wear wigs. I had my chemo done over the Summer, and it gets to be in the 90's, sometimes up to 100 where I live. I didn't think I'd be able to handle wearing a wig through the heat. So I had all kinds of hats and scarves, which I eventually learned to tie correctly.

I worked all through my chemo and radiation treatments. My job was very understanding and supportive and they pretty much allowed me to work when I wanted.  My usual schedule was four 10-hour days. I would work those on Sunday through Wednesday during the week I was having chemo. I would receive chemo on Thursday, go back to the office on Friday for the Neupogen injection, then be off also on Sat, Sun, Mon and Tue. Then I'd work Wednesday through Saturday during the 2nd week to get my 40 hours in.  During the 3rd Week, I'd go back to my usual schedule. When another chemo treatment came due, I'd revert back to working my hours in the beginning of the week, so I'd have 6 days off in a row for chemo.  This worked well for me.

I was fortunate to not have nausea. I was pretreated with oral Dexamethasone starting a couple of days before chemo and also as an IV infusion before the chemo was infused. I was given an infusion of Aloxi before the chemo to prevent nausea. I felt pretty good the day of Chemo. It would hit me the next day....the tiredness and overall achiness, mostly in all my bones (which they said was primarily due to the Neupogen).

I would also recommend that you remember that your resistance is down while on chemo. So if someone has a cold or is sick..they simply cannot come to visit you. Wash your hands and be diligent about exposure to others when you do have to go out, like to the store or something. I am not saying to become a hermit - just be careful.

One day during that Summer, I helped my sons while they were doing yard work outside. My help consisted of using the weed-eater along the edge of the garage. That was all I did. I must have stirred up some poison ivy, because I contracted a doozy of a case. I had never had poison ivy ever. The only body part that didn't have a rash was the bottoms of my feet. Handling that rash was the only time I had to take off work, because I was so itchy and miserable. (Oooo, I shudder now just remembering.)

I hope your antibiotics work soon. Take care. I want to know how you are doing.

welcome to our wonderful family. And I am sorry you have need to be here but glad you found us.

A couple of things-

There is a marvelous book called Turning Heads that a friend of mine wrote. Pictures of about 50 women who have lost their hair due to chemo and their stories. I think this inspirational book could have been subtitled “Yes my hair is gone, but I am here.” Hard to describe it. It is a lovely book. My friend, the author, Jackson Hunsicker is a breast cancer survivor and I think she did a marvelous job. I would be happy to send you a book at no charge just please send me a PM with your address...I will send you a PM so you can just reply. I will not give your address to anyone. If anyone else could use a book, also at no charge, please let me know. I think I have about four left.

I am assuming (always dangerous to do) that you have met with a Certified Genetic Counselor and have tested for the BRCA mutation? You should, if you haven’t.

Please stay in touch and you shall be in my prayers,

Steve

Nancy, thank you so much for your story. You seem so strong and I hope to be just as strong as you throughout all of this. I just came home from my 2nd treatment. 

My next question is about eyelashes and eyebrows. My first chemo nurse said I should be fine, but the nurse I had today said "if there's hair, you'll prob lose it" Wondering if thats the same for everyone? 

 

I was diagnosed with TNBC Stage 2a (2 positive axillary lymph nodes) in Feb. 2011 at age 53. My B/Surgeon actually gave me this horrible news a few days before my B/Day - 2/24. Anyway, I completed the standard treatment - surgery, chemo, radiation therapy from April 1st to Nov. 14, 2011. Yes, I lost hair everywhere there was hair on my body - if you know what I mean! You only read/see in the magazines about hair loss on the head, nobody says anything about other body parts. Needless to say, my experience was an eye opener for me, but all in all, it was the LEAST of my worries during treatment. I prayed fervently that every single cancer cell in any corner of my body should be crushed and "fall off" as every strand of hair everywhere was falling off! So Nicole, I wish you well with your treatment and will keep you in my prayers.

 

Vikkie    

Yes, I lost all my hair. My eyebrows and eyelashes didn't go until 3 weeks after my chemo ended. What a surprise!

I think for me the most surprising thing was losing the hair in my nose. Weird as that sounds! I don't know if it was chemo or what, but I had just a tiny bit of nasal drip ...just a tiny bit. I had to carry a tissue with me all the time to dab at my nose. Wasn't running, just a little wet. Then I figured out the hair was gone, which I guess is what would have kept that from happening. (ok - eeewww)

I really took advantage of not having to shave my legs!

 

Good luck on your journey, we're here for you.

Kay

 

David

Today? well my lashes and brows still coming in and i have about an inch on top of my head and shorter around the sides.

The hair is super dooper soft and its original color =]

Probably going to get to looking pretty freaky, kinda like Albert Einstein.... LOL

 

 

ACS has "Look Good, Feel Better" classes taught by licensed cosmetologist that show you how to do make up, wigs and scarves for women going thru chemo. It is no charge and comes with a very nice make up kit that cosmetic companies have donated their products for.

 

Otherwise, look in the resource area on this site for tips for doing eye lashes, liner and eyebrows.

The first time I finished chemo the end of October.  It was a good 4 months before I could go without a scarf or wig.  It was very short, but I had enough to feel comfortable going without a headcover.  Mine came in very curly and lots of white in it.  Not grey hair, but white.   The hairdresser had to color it twice to get it to take.  I had the hardest time controlling the curls.  I'd straighten it and put hairspray on, but just a little humidity and it was back to curls again.  It looked like a real bad perm.  Once it grew out, my hair was back to my normal color and texture.

After reading about the others talking about not shaving, nose hairs, etc. it brought back all those memories.  I forgot about no nose hair!  It was weird not to have any hair on the body, but I sure did enjoy not having to shave.  That was one side effect I hoped would remain.  I guess we can't pick and choose, sigh.

Kirby, where on the site can u find that make up kit??

So sorry to hear about your diagnosis, but I'm glad you found the people on this site - they helped me a bunch.

I found my wife's head beautiful when bald. Honest! It was so smooth and - I don't know how to express it exactly, but I found it gorgeous. Anyway, that's my two cents.

I hope your treatment goes well for you, and all your tumors melt away.

Best regards,

Wade

Here's a link to the Look Good Feel Better Programs.  There is a place at the bottom of the page to enter your zip code.  It will show you where and when the programs are offered in your area.  The programs may fill up quickly so you want to sign up early.

http://lookgoodfeelbetter.org/programs/programs-for-women - http://lookgoodfeelbetter.org/programs/programs-for-women

Donna

 

Good Luck!