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Just started chemo... (my story)

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Nicole26 View Drop Down
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    Posted: Jan 24 2012 at 12:47pm
My name is Nicole and I was diagnosed on October 25, 2011 (2 months after my 26th birthday.) I had actually found the lump 3 months earlier but the ultrasound tech said it was nothing to worry about. 3 months later I realized it had grown so I had an open biopsy (open- bc I have implants). I was diagnosed with Stage 2 because of the size of my tumor. It's been an up & down roller coaster since. I had a lumpectomy and 1 lymph node removed and it all came back negative. I was very reluctant to do chemo since I had watched my Grandmother go through it when I was a teenager and knew how hard it was. After testing and realizing I was triple-negative, I was then told I needed to do chemo when one Dr actually compared my life expectancy to the Russian Roulet scene in the movie, The Deer Hunter. (Chemo being one bullet I'm removing from my gun) I then did a Pet Scan where a lymph node was flagged, removed, and was positive. My surgeon called me to tell me about my results and said it had pushed me to Stage 3. However, wherever I read, I'd still be considered Stage 2, but Stage 2b- since it was only one lymph node. Is that not correct? I'm thinking my surgeon might be confused and I see my oncologist tomorrow and was going to confrim with him. I'm now 2 weeks into my chemotherapy. I unforunately was sent to the ER 3 days after my first treatment because I caught a cold which then turned into bronchitis. I now have an inhaler I use every 6 hours. As far as other side effects, I was more nauseated the first 3 days, rather than AFTER the 3rd day (which I read a lot). I had a LOT of body aches, but I'm not sure if that was from my cold or chemo. My next treatment is this friday. I already bought my wig(s), so I'm prepared for my hair loss, but wondering exactly when it'll start? and will it be FULL hair loss? I'm doing this all by myself. I have no husband or boyfriend for that matter, and I live alone. My mother comes in for 3 days every treatment because she's lives 2.5 hours away. I'm wondering if I'm going to need more physical support than that as time goes on. I used to be a bartender, but thankfully my job relocated me to a desk job. I'm VERY independant and it's hard for me to think about being out of work especially since I've missed so much over the past few months. Will I be able to continue work during all of this? Today, I feel fine. I've been very positive and optimistic through all of this. I'm even setting up a photoshoot for each month to give me something to look forward to. One day out of the month where I get my make up done, wear a sexy wig, and feel beautiful still while going through all of this. I refuse to let this take my womanhood away from me. I'm so happy to have found a site that's directly related to my diagnosis. I feel like a lot of people in my life don't realize how serious TNBC is. I'm glad I'm somewhere that does. May God bless you all...
 
Nicole
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 1:20pm
Hi Nicole,

Thanks for sharing your story.  You are very young and I'm so sorry you are going through all of this.  You sound like a very strong and independent woman and I know this will help you in this battle.  What type of chemo are you getting?  Everyone experiences different side effects.  Some people find they can't work while others sail through it working full time. 

Regarding hair loss, mine started on day 15 following my first chemo.  You'll know when it's going to happen because your scalp will feel funny, almost achy feeling.  The hair will gradually fall out over the next few days once it starts.  I remember pulling on my hair each day to see if it was going to happen.  Then one day when I tugged, my hand had about 30 strands.  I kept pulling and more would come out.  That night we shaved my head (maybe 1/8" shaver setting).  Over the next few days in the shower I'd rub my scalp and more of it would come out until.  There will be some areas where you'll probably still have hair.  It reminded me of a newborn baby with little patches of hair, mostly around the baseline of the back of the head and by the ears.  The good news is your hair will grow back.

What type of antinausea meds are you taking?  Let your onc know you had more nausea.  They can try and adjust your meds so you don't experience it.  Are you getting Emend?  It works wonders.

Please keep us posted on how you're doing.  This forum is a great place for support and information.  You can openly express your feelings and vent.  We understand what you're going through.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 1:35pm
Hi 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
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nicole26 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 1:35pm
Donna,
 
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?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nicole26 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 1:39pm
Majjers,
 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.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 1:48pm
Nicole,
 
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
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 1:59pm
Nicole,

I remember them giving me several premeds like Benadryl, Ativan, Decadron and Emend to help with the side effects.  I never had Zofran, but I know others used it.  I hope your side effects stay minimal.  Sometimes you'll get several different nausea meds to try if one doesn't work. 

There's a group for young breast cancer survivor's (under age 35).  There's a thread with some good information:

http://forum.tnbcfoundation.org/young-adults-breast-cancerall-stages_topic9513.html

Donna

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 2:16pm
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
< id="_npwlo" ="applicationpwlo" height="0">
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 2:30pm
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


< id="_npwlo" ="applicationpwlo" height="0">
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nicole26 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 2:34pm
Overwhelmed, I believed my node was also extremely small since they couldn't feel it when they pressed to search for it. I was also told that some of the lit area on my breast was also due to surgery. So it does sound like we have a very similar story.
 
Thank to those who suggested the link to young women with breast cancer, I'm going check it out now!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 4:25pm
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
< id="_npwlo" ="applicationpwlo" height="0">
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 11:31pm
Hi Nicole,

Welcome, but as other have said, so sorry you have a need to be here. As you are hearing, we all react very differently to the treatments. I was diagnosed at the end of April '11 at 46 yrs old. I did neoadjuvant chemo, then lumpectomy, just finished radiation today :) and next month will be entering a clinical trial.

I had Zofran with my AC treatments, while other docs aviod it because I think some folks have problems with it. I would say that it does cause constipation, so be aware of that and don't hesitate to throw some Miralax in your coffee or tea. You don't need to deal with that on top of what I refer to as 'chemo crummies'. On top of the Zofran, they gave me a seconday med, whose name escapes my chemo brain right now, that I could take in the event that I felt sick before it was time for me to take Zofran again. I also had Benadryl with premeds and that would knock me out so I always needed a driver to get me home. Fortunately, I didn't get the muscle aches but know that some women do. The sleep though...ugh...just ask for something.

I did stay working through my entire treatment without missing anything. I was certainly dragging butt some days, but I don't know that I would have felt any better staying home moping on my couch!I had all of my treatments on Friday (my day off)and at least had the weekend to lay low.

My hair started falling out exactly on day 15 like Donna said, and it ached before falling out. My eyelashes and eyebrows actually held on thru most of my Taxol before slowly giving up the ghost. I shaved my hair too and not all of it fell out completely, especially in the 'male pattern baldness' areas!

I was lucky enough to only have minor mouth problems, but my sense of taste was way off for months and smells could put me over the edge.

I think you are right about the staging and that might make a difference with how some docs choose to approach it. Don't be afraid to seek out a second opinion, only if it just confirms the first. We only get one shot at this game, so throw everything you can at it! You have found a group of women who are great advocates for themselves and those around them, very educated on fighting this beast, and the most compassionate people you could ever meet. There is something so reassuring about having people who so completely understand what you are going through.

Best of luck,
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 1:32am
Nicole,
 
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.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2012 at 1:39pm
Hi Nicole,
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
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nicole26 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2012 at 2:24pm
Traci, I'm so sorry for you unfortunate cicumstance. It sounds so painful. I actually have an extreme cough that was recently brought on, but they ran some chest x-rays on me in the ER, and they were clear. I'm on an inhaler, but i can't seem to shake this darn cough, so my doc put me on more antibiotics. I will pray for you. & Good luck.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 10:58am
Dear Nicole,
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 1:01pm
Hi Deb!

I'm so glad to hear that you finished your radiation. I'm amazed that you were able to work through all of the treatments thus far. I hope you do great on the clinical trial as well!

Best regards,
Wade
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 1:51pm
Dear Nicole,

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


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nicole26 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 3:34pm
Steve, I would love to read that book. Although, I do plan on wearing my wig majority of the time. I have a lace front and it seems pretty manageable, but we shall see. 

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? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 4:06pm
Nicole,

My eyebrows thinned, but I lost my eyelashes after I was finished with chemo.  Within a few weeks after I was done, I lost all my lashes.  Yuck!  They fell out, but grew back.  Nothing like being bald and no eyelashes.  So don't be surprised that you have your lashes during treatment and then when you're done, you lose them.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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