Anyone Starting Chemo Jan. 2010?

mom2Bnegativex3

Ty, that is what I am waiting on now if to have rads or not. I will have my surgery in March. I am on the same treatment as you but Ihad tretment first before surgery. I will have surgery after my last A/C then I will have my for Taxols after surgery. They said tht they want to wait to do recon to see if anything is affected during surgery and then waiting for it afterwards. The bad thing is is that having chemo first who knows if I had node involvement or not. I really don;'t want rads because of the heart damage, it will diminish lung compacity and it may affect my asthma but then again I don't want to have teh cancer back. All three of my docs say no BUT we dont know if I had node involvment before chemo or not. My rad onc is looking up a study he has on the statistics on rads. Good luck I hope you come to a comfortable decision.

leta17

VegasDiva - I had my 2nd on Thursday and I too felt weepy and sad yesterday, day 4, I also didn't have much energy and that is a hard pill for me to swallow and I was sad....today, I am angry and ready to fight again...funny how each day brings something different.  Love the scarf!

I too cannot believe how many women are on this thread!!  At what point do 'they' call this an epidemic!!!  I won't get on my 'soap box' again, but we really need the research $ focused on prevention and cure....and not just more drugs....

Leta

hbrandle

I was wondering if anyone has experienced crusted eyes? I wake up every morning with my eyes crusted over. My eyes also water constantly. I still have some lashes but not all. Just wondered if anyone else has experienced this and what, if anything, you used as a remedy?

Thanks so much!1

mom2Bnegativex3

I to have to wash my eyes every morning. I THINK my lashes are getting thin but I know my eye brows are. How about anyone else?

Now I am scared. This is the first time ever since being told I had breast cancer. I had chemo before surgery all my scans came up neg but it seams like most of youhave had your surgeries before chemo. I won't know forsure if I had true node involvment since I did chemo first so I don't know if it was in there before surgery. It was budding up to my chest wall so does that mean if I don 't have radation it is going to come back in my chest wall if I don't have rads. I am scared to have the rads so I don't know what to do. THIS SUCKS!!!!!!!!!!!!!!!!!!!!!1

Issymom

hbrandle - My eyes are crusty ever morning and they water throughout the day.  It is not too bothersome during the day.  My nose is drippy too.  My onc nurse said it is the Cytoxan for me.

mom2Bnegative- This does suck.  Many people have chemo first then surgery if the tumor is big or they aren't sure they will be able to get clean margins.  I think many have SNB prior to chemo to see the lymph nodes but I also know women who have been able to see their bad nodes from the US or MRI.  Maybe they are pretty sure they were negative to begin with.  I will pray for wisdom for your doctors.

friscosmom

hbrandle - yep, crusty morning eyes here too, not too much watering during the day. I think my eyelashes and brows are thining, it's hard to tell but I've always had thick eyebrows and long lashes and they just don't seem as thick or long any more.

mom2Bnegativex3 - mine was very close to my chest wall too. My surgeon sent me to the onco before doing surgery as he was concerned it was too close to get clear margins. The onco ordered a breast MRI which determined they would have enough room. Based on that they decided to do surgery first then chemo, had they not had enough room for clear margins they were going to do chemo first, then surgery because the idea was that the mass would shrink enough during chemo to allow for the clean margins. I choose lumpectomy over mastectomy so I was in for rads either way but was told if I had chosen mast and they got clear margins and no lump nodes I wouldn't get rads.

 All that to say, doing chemo first, even though it's close to the chest wall there's a very good chance they won't have a problem getting clean margins since they are working on shrinking that bad boy before surgery. On the part about not knowing about the lymph nodes, I understand the anxiety. I did have lymph node involement and that's why I'm having chemo, they weren't going to order chemo otherwise, just rads. The point of my chemo is to knock out (hopefully!!) any of those nastly little cancer cells that may have traveled to other parts of the country so take comfort in your chemo that it's doing that job right now.

bbd

Nkrun-

Your commercial is running in the Boston area. It was on yesterday during the Sunday Morning show. The commercial and the pictures of you with your co-workers makes me think that you are lucky in your work. Is this a correct assumption? I am finding that BC has caused me to pause and reflect on what I do for work. I have seemed to wander through my career taking jobs as they present themselves, but not loving what I do. Certainly working for a paycheck is important but recent events seem to make me feel like life is passing me by. Do others feel this way? I know right now the goal has to be to get through treatment and then figure things out, but I think BC is giving me a wake-up call. I just don't know wake up to what 

Barbara

hbrandle

Don't be scared....I have all my treatments before surgerry...I start my Taxol tomorrow. I will let you know how it goes. :-). :

jrlegal

MSLG:  How did you get the voucher for the free wig? Do you just call the American Cancer Society and tell them where you live and they select the wig shop?

youngmomof3

Finally had my port study today to see why the damn thing hasn't worked since it was put in 1/12. Brought my mom because they told me to make sure I had someone there to drive me home and also wasn't allowed to eat or drink anything after midnight in case they needed to fix the port and give me anesthesia. Needless to say once I am told that I can't eat I suddenly am starving and fixated on food so it was a very long morning because my appt wasn't until 12:30. At my appt. the nurse was able to get fluid to go in and draw blood out but both did not go as easily as they should. They injected a dye into my port and using the x-ray machine the Interventional Radiologist was able to watch the dye flow through the port and into my body. He said that the port looks like it works but that the tubing in it is a little too short & that this is why it is giving the nurses a hard time every week. Gave me the okay to use it for chemo but that they probably won't be able to use it to draw blood which was one of the advantages of having the darn thing. The doctor told me he could replace the one I have in a simple surgery so i will talk it over with my oncologist on Thursday. The nurse, the technicians, and the doctor all asked who put it in and when I said a surgeon they all rolled their eyes and gave me a look like "Oh now we know why it isn't working". They all told me that they see alot of people with port issues when surgeons put them in. Apparently Interventional Radiologists put them in all of the time and use the x-ray machine to guide them along which makes the placement and size of the tube more accurate. This would have been wonderful information to have BEFORE I had surgery! Anyway, at least I know that it does partly work and that if I do decide to have it replaced the procedure and recovery won't be as bad as the first time. Oh yeah, and since they didn't need to use anesthesia today I starved myself for nothing:)

mom2Bnegative: I am also doing chemo before surgery. I was initially scheduled for a lumpectomy 1/5 but they found a 2nd lump and after a breast MRI, they also detected several small spots that could have been cancer cells so I decided to go with a bx mas. My surgeon & onc decided that the most aggressive and immediate route for me was chemo first.I think this was partly b/c I am Her2+ and grade 3 and also b/c I was having serious anxiety about the time it was taking to get things moving. I was diagnosed 12/11 and didn't even start chemo still 1/21 and that seemed like way too long to let these cancer cells try to find their way into other parts of my body. I did have SNL biopsy done and there was no node involvement. I asked my surgeon her honest opinion on my doing chemo first and she said if I was her sister she would recommend chemo first given my case which made me feel much better.

For all of you that are feeling crappy this week remember that this time next week you will be feeling better. I have been enjoying feeling good this past week; doing what i normally do...taking care of the kids, cleaning,cooking, going to work but know it will be coming to an end as my next chemo is on Thursday. I am so anxious about it and dread sitting there all day worrying about what is to come. Oddly another part of me is looking forward to getting #2 under my belt. Does anyone else feel this way?

My hair is really shedding now. I am not sure who is shedding more, me or my dog. I am afraid to run my fingers through my hair b/c I am worried that more will come out. For those of you that have lost it, do you have a sense of feeling free?Empowered? I am hoping for one of these feelings and not just complete saddness. Everytime I look in the mirror I wonder how much longer I will be looking at myself with hair. Had my DH take pictures of me with the kids tonight b/c I wanted to have a few recent ones while I still had my hair. God this is all so surreal. How did we get here? Sometimes I feel like this is not my life, that I am a spectator watching all of this happen from the sidelines. Or that it is all just a bad dream and that one of these days I am going to wake up relieved. Oh how I wish this were the case. 

friscosmom

youngmomof3 - interesting information about the port and surgeons. Mine was put in by the same surgeon that did my lumpectomy. However he and my onco have a tight working relationship and he does lumpectomies/mastectomies and ports on a regular basis so thankfully I guess I had one that knew what he was doing, I've not had any problems yet (knocking on wood). One thing I found out about my port at my last treatment is that since I have a Power Port they can not draw blood from it. I assumed the did my draws for my bloodwork from my veins just because that was their preference but apparently the Power Port is not designed for that. Hum...

I know exactly what you mean about sometimes feeling like a spectator, I feel that way quite often, like this is not my life, this is not happening to me.

mslrg

Vegas Diva--I also got my franceluxe scarf on Saturday. Yes it is beautiful and soft, and yes it's slippery. I got he black and white zebra stripes one.

Issymom-sorry you're not feeling well. Hopefully in the next few days you'll start to gain a little strength and start to feel more like yourself--before the next infusion.  I am feeling good, but can't entirely enjoy it because Friday will be here in 4 days, and I'm back in the chemo chair again!

I was able to work in the yard today and finished my vegetable garden. I planted tomatoes, cabbage, leeks, onions, broccoli, cauliflower, lettuce, parsley, spinach, peas, and Swiss chard. I then did more weed whacking, pruned fruit trees and came in to assemble a dresser we bought at Ikea. The dresser's not done yet, but I will finish it tomorrow because I'm tired now. Off to take a hot bath. Hope you all had a great day!

nursemary66

Haven't been on in ages. I've had 10 days of feeling almost normal...that is if being bald is normal!!! One of the worst SE is the horrid taste of food..bitter and over sweet. Ketchsup makes me gag! The only things I can drink are plain iced tea and ginger ale. As an eye nurse, one of the side effects of Taxotere can be that the tear ducts get blocked.so if you are having lots of tearing you may need to see an ophthalmologist. do  have it checked. I've lost all of the hair on my head and NONE on my body??!! Crazy.This time after my second session was much better. BUt my Onc uses Neupogen instead of Neulasta. It worked this time and my white counts didn't drop. I did have to give myself the shots..one every day for 6 days..ulp! My next session is Wed. the 17th. I still have meltdowns but bless my hisband he still thinks I am sexy. And I am taking Effexor which helps a lot. I haven't gotten a wigbut I did make a "bang" out of my own hair. Just glued and sewed my hair that was cut off to a head band..it looks great!  I am so lucky to live in Portland..we are having rain,but 50 degrees!  I still feel like this whole ting is surreal..not really me that it is happening to. Good luck all of you ladies..WE CAN Kick Butt

Issymom

I just got back from Look Good Feel Good.  I got an amazing bag of makeup, moisturizer, and cleanser.  I highly recommend it.  We did talk about the scarfs being slippery (my headwrap is not slippery because my head is so big and the stubble is like velcro).  Anyway, someone said they got a terry clothe cap to go under the scarves.  It keeps it from slipping and adds a little volume under scarf.  You can buy them from TLC.

hbrandle - I am interested in hearing how Taxol goes as opposed to AC.  I am about 3 weeks behind you and am so looking forward to a good change.  My onc says it will be a cake walk in comparison.  I so hope so.

pagowens

Hi All,

I wore my Franceluxe scarf for the first time on Valentines Day.  I got sent the Zebra Scarf as well.  I had purchased from TLC a black lace and white lace night hat - which are soft, very close to the head and very pretty.  I put the black lace headcap on first and then the zebra scarf.  Not only did it look great and didn't slip around at all  - it matched my zebra hood jump suit that I wore.  So going out to lunch with my DH and Grandson was a great joy.  And, the first time I didn't wear my wig in public.  Plus I don't think I looked like a pirate!  LOL!

I get my 3rd AC tomorrow.  Not looking forward to it because although I've been through 2 both were very different experiences.  I feel like I'm on a rollercoaster ride.  You get into the station at #1 AC - with some anticipation and dread -- the coaster takes off and you experience some steep hills and valleys - all different sizes and types - and not enjoyable.  Finally, the coaster begins to wind down and the ride becomes more stable - you're greatly relieved....only to pull into the station again and take off on another ride.  You know some of the hills and valleys but the ride has shifted and the peaks and valleys are different.  You'd like to get off, but the damn coaster doesn't stop yet.

I'm hoping Taxol is more tame like the teacups ride than the roller coaster.  Since it's 12 weeks, weekly, for me, it better not be the wild mouse.

And, I love amusement parks.

Hugs to everyone.  We shall get through this together.  Maybe like childbirth - later on you kinda forget the pain and only experience the joy of life?

Brother, I must be in metaphor land today!  That's enough from me.

Pat

11tyBillion

Thank you youngmomof3 for writing about the choice between having the surgeon, versus the Interventional radiology folks putting in ports! I had no idea what made them different, but I had a GREAT experience having my port put in my Interventional Rad too!

When I first visited the Chemo nurses (before my chemo started) they asked me about whether or not I was thinking about getting a port.  When I said yes, she immediately asked me who was going to do the surgery.  My husband and I had no idea that there was a choice, so we both just shrugged.  She looked through my charts and told us that the same Dr. that did my MBX would be the one to do it ... Appaerntly, my BMX Dr., wanted to install the port the DAY BEFORE chemo started (!?!), and the interventional Rad folks would want me to come in 2 weeks before chemo started so I would have time to heal.  OMG.  On that alone I was ready to make a decision (I did NOT want to have major surgery the day before my first chemo), but the look on her face when she told us this was one of those exchanges I will never forget.  It was like she was talking really cautiously, like she wanted to tell us something but couldn't, she "led us" in the direction to having Interventional Rad do it.   I am eternally grateful to her for that!   The Interventional Rad folks REALLY good at what they do, my incision is barely visible, and my port works very well.  Until now, I had no idea what they did differently than the BMX surgeons!  From that point forward, I now ask the chemo nurses their opinion when it comes to this kind of stuff, because those women see this crap EVERY DAY.  Those chemo nurses are SHARP and they REALLY know their stuff!

Oh ladies, I am getting anxious about tomorrow.  I know it is my last round of A/C, and I am starting to have all sorts of antipatory nausea about it ... but now I am getting all nervous about the following  Taxol treatments, and "what if's" on the reactions and all.  I have been staying FAR AWAY from the Taxol board topics, because reading about some members adverse reactions to it, scares the crap out of me.  Someone told me that Taxol is a "cakewalk" when compared to A/C ... yeah, well, I will just have to wait and see on that, because it seems that everyone reacts so differently to this stuff!

mslrg

JR Legal--The ACS called me after I contacted them about Look Good/Feel Beter and one of the services they offered was a call from a b/c survivor. She asked me how everything was going, including hoar loss issues. I told her about the difficulties I was having with my wig, and that I thought I sould have got a short one because I live in California and it will get hot soon. She told the guy who first contacted me and he called me back. He asked me which wig shop I got my first wig from, and it happened to be one of the shops that they have an  agreement with. You can choose a free, gently-used, donated wig, or get a $75.00 voucher towards a new wig. I didn't think I'd be into a used one, but they sanitize them and I actually liked the first of 3 wigs I tried on. I would start with their toll free number and go from there. Good luck.

youngmomof3

Friscomom & 11tybillion: so glad to hear your experiences went better than mine. Apparently surgeons do the procedure differently going in through a different location and leaving a larger scar. but i guess it really just depends on the surgeon that you have. I really like my surgeon but am not happy about the port issue. still plan to use her for bi-lat mx.  Just sounds interventional radiologists like  do them more often but since I was already having lymph nodes removed with the surgeon she put the port in as well. I never even heard of interventional radiologists so had no idea they were an option. Friscosmom I also have a power port and nobody mentioned that you can't draw blood from it. def going to have to ask that question. 11tybillion, try not to worry too much about the Taxol and I agree that sometimes reading too much info can scare the crap out of you. Just take it day by day.

mslrg: so jealous that you are able to to do stuff outside b/c here on the east coast we keep getting hit with the snow. i am so sick of this darn snow. enjoy your nice weather and please try to send some this way. good luck with your veggie garden.I also called the local ACS about the look good/feel better but haven't heard back from them yet.you are a wealth of resources info so thx so much.

Pagowens: love the rollercoaster analogy. completely agree that you just never seem to know what is coming next and lord knows I wish this darn ride would stop soon. Here's hoping it is like childbirth and that you forget all of the pain and just enjoy the wonderful end results...life:)

VegasDiva

I was starting to feel a bit better yesterday when suddenly at 6pm I started to get horrible abdominal cramps.  On a scale of 1 to 10 they were a 12.  I was so cold I was shaking uncontrollably yet at the same time I felt like I was on fire and sweating profusly.   I was extremely nautious and thought I was going to pass out.  I was so scared, I called my BF and asked him to hurry home.  By the time he got home an hour later I was feeling slightly better.  By 10pm the entire episode had passed and I was up watching the Olympics. 

It truly is a surreal roller coaster ride, but I just want to get off.

Does anyone else have any sores in their "neather regions"??  I had 2 on my arms after tx 2 and now I have like 3 down there and it is uncomfortable.

I'm glad to have off today.  I am enjoying looking at the gently falling snow.  I put food out for the birds so the cats and I are enjoying watching them through the glass doors.

agbmom

Did anybody NOT shave their head? My hair is falling out in clumps, but I still have more hair than scalp showing. It's Day 19 for me.  I'm picking up my wig tomorrow, but what if I just let the hair run its course? 

georgiabirdgirl

Hey all.  I've been laying low for awhile and just reading all the posts.  I've finished 3 of 4 AC treatments and I just hope and pray that Taxol is a cake walk.  I could use a break.  Funny about all the  port talk, because I spent yesterday at the hospital finding out that my port has caused a blood clot that goes from my chest into my underarm.  I kept complaining of shoulder pain, but after the last infusion the pain was much worse and it wasn't the regular neulasta pain.  Now, I have to give myself shots in the stomach and take blood thinners for 3 months.  GREAT!  This roller coaster ride is starting to get OLD!  I just keep telling myself that I can endure anything that's temporary.  We had a beautiful snowfall here - big deal for Atlanta- and I actually felt good enough to play with the kids outside on Saturday.  What a beautiful thing!  But, I paid the price and spent all of Sunday in bed.  Spent a completely useless few hours at work yesterday, before the hospital.  Now, I'm at home and I'm starting to perk up a little today. 

By the way, I had my port put in by my surgeon.  Not sure if it's just bad luck or bad placement that caused the clot, but interesting that no one ever mentioned an interventional radiologist.  Mine is a power port and they do draw blood from it.  Not sure what the difference is.  I'm starting to get scared about what happens next- after chemo.  I am going to get the BMX and was hoping to avoid rads.  My eyebrows are thinning, but still there.  My eyes are constanly watery, along with my nose.  My fingernails are dark and have white spots.  Nausea isn't too bad.  I know that this is a marathon.  I just need to figure out a way to speed up these bad days.  Take care everyone.

michelle_nj

I also started to wonder if this poison is working.
I'm Day 5, #3AC and I still have more than 50% of my hair. And the body hair is still there, maybe thinner, but there. I just have nausea and more nausea.

Hope everybody will feel better today!

mom2Bnegativex3

ITA, Pagowens. It is like a rollercoaster but boy am I ready for #4. I am more nausated this time but my meds keep it at bay.

Georgia girl, I am soo sorry. You don't deserve any of that.The weird thing is they do not draw blood from my port though. Just through the arm. My eyebrows are thinning too but I look at it this way at least i don't have to worry about my unibrow! lol My nose drips on my second week.
It is sometimes hard to watch TV cause of my eyes too.I don't wnt rads either. Although I want this SH*T to be gone I have to wait for surgery. I will have my last of 4 AC's and then will go for surgery 3 weeks after then go for my 4 Ts. My tumor is all gone so that is good but I am so worried it will came back in my chest wall.

Agbmom, I didn't shave my head. I have thinning spots everwhere. I can still pull off a hat with my real hair though. It is thin but at this point I don't care. I wore MOLLY my full wig yeasterday to go get labs and even there at the cancer center I was starred at, WTF. I feel like I am not true to myself If I wear it. I don't wear it on chemo days 'cause it is not comfortable.

Yikes, Vegas diva, that sounds scary. I wonder what tht was. Glad it is gone though.

I know what you mean, Ty! I want this over but scared about the Taxol part. I am glad i get the 6 week break for surgery. I just wsnt to feel normal. I know surgery won't be normal  but I just feel icky. Don't worry you will be ok. We are strong!

Great attitude, Maryanne. so cool about the bang. I live in kansas and it is not even 30. I want spring so bad.

Hey Mr. Lrg, on my paper when my wbc are low they tell me not to garden or be around plants?? I am so gld you can get out and do something but wear jammies, eat and try to keep you hat from falling off, (ahh that is what I am doing, lol)

Wow Issymom! I have got to get a hold of this place. Sounds like a score for you!! I went to the website but couldn't find it.

Youngmom, thanks for the reply. That makes me feel better.

Leta it is crazy how one day can be one way and the next is so much different.

as this is my 3rd off treatmentweek I get sooo grumpy. I mean like cussing, don't speak to me kinda grumpy. It is like pms every two weeks. I am just thankful that we dont' have our periods cause that is just not fair. Today is better then yeasterday. One freak out in 3 months not bad. It just got to be to overwhelming. Stay strong ladies we will get though this together!!

agbmom

michelle_nj - Are you doing dose dense?  I'm at day 19, but have only had 1 infusion because I'm doing it every 3 weeks. My second infusion is this Thursday.  I have had no zero nausea.  My oncologist told me you don't have to be sick for the chemo to work,  I guess the hair will go though. Most people shave because it becomes unmanageable, but I guess if you don't shave, some could hang on.

agbmom

mom2bnegativex3 - Thanks for the response!!  I had super thick hair and I'd say more than 50% has fallen out, but it's tempting to just keep what remains for like you say, a bit poking out of a hat.  I will start wearing my wig tomorrow all the same.

I was super grouchy last week because I actually did get my period.  What a shocker that was.

11tyBillion

I was SUPER grouchy too, after my 3rd treatment.  It seemed as though either I was crying because I felt so bad, OR I was trying to tear someone's head off.  Honestly, I don't know how my husband is putting up with my mood swings!  This is so much worse than PMS ... I wonder if we are having these swings because of the effects of the chemo on our ovaries?

VegasDiva

agbmom  I didn't shave my head.  I just let what happened, happen.  I cut my hair about ear length and just comb it straight back like gordon gekko.  My thought is, whatever is left is a head start on it growing back.  I did go through one period of a couple of days where my scalp felt weird, but that too passed.

11tyBillion I was crying uncontrollably over the weekend.  I just couldn't help it.  I just kept kept thanking my BF for helping me and telling him I understand how hard it is to be a caregiver.

I think we are having these mood swings because of the chemo.  I had a total hysterectomy 6 yrs ago and I've been past this stuff.

I emailed my RN about my episode last night.  He called me immediately.  He was going to speak to my onc and find out if she wanted to see me.  I told him I was not up to driving to the hospital and had no one to take me.  He said I should have gone to the ER, but I didn't want to.  I was too sick to go!!  LOL

Anonymous

bbd,

You are correct is assuming that I'm extremely lucky in my work. Sometime have to pinch myself to make sure it is for real. Believe me, I was in your boat a few years ago. I jumped ship  with my former long time secure employer to be with a company with values and in the part of the country that appeals to me. It was a huge risk that paid off tremendously. My coworkers are a big part of making this whole cancer sh*t show bearable.

KAJDerby

Had my 2nd ac a week ago and am finally feeling ok.  I have been reading, but not posting.  I am not dose dense so I feel a little behind all of you.  I hate this ac and PAGOWENS I LOVED your analogy of the rollercoaster.  You should write that in a journal or something.  It would be great for newly diagnosed people.  A rollercoaster is exactly what this feels like.

Georgiabirdgirl - so sorry about the clot.  Can't imagine how distressful that would be!

Vegasdiva - hang in there.  I have the chills, sweats, and nausea everytime on the 1st day of treatment.

youngmomof3 - How frustrating about your port study.  My breast surgeon did my port and used an us and xray.  He did a great job.  In Okinawa your cancer surgeon does all the surgeries. 

There are days that I can't even look at the words "Breast Cancer" without feeling like throwing up.  My hair is almost all gone.  My husband was away on a business trip.  When he left I had the stubble from when he shaved my head.  When He got home I only had a few little strands standing on end!  Big change for him.  I love my free scarf and I use a hat liner under it to keep it from turning around on my head.

Praying for everyone through this difficult time. 

agbmom

VegasDiva: Thanks for responding!! I had to Google Gordon Gekko.  I think I'll skip the shaving too, if I can stand it.