Starting Chemo February 2009?

Last night was the worst night as far as getting any sleep.  I saw the clock as it was 1 am, 2 am, 3 am and then 5 am.  I finally got up since I was laying in bed not able to get any sleep at all.

The Lortab 7.5 mg and 2 benedryl didn't help one bit!  It is a wonder that I am not a total biatch today but I think that is only because I got to be around my horse yesterday and then again today.

At least I am no longer nauseated - that is until I get poisoned again on Wednesday.

I need to get my hubby to sign us up for a membership at the community center - I need to start walking and because there are so many steep hills in my neighborhood I am scared to go walking by myself and then run out of steam.  Besides I need to be able to carry water with me and that is a PITA when you are walking around.  I am ticked off that I have gained 13 lbs so far and if I don't start on a regular walking program I am going to get as big as a house and then I won't have clothes to fit.  I am already wearing my "fat" clothes. 

On a bright side I am getting more comfortable with the "bald" head - I am at least taking off my wig and showing my friends but I won't go out in public like that and I still wear a cap when I am at home.  Thankfully I don't scare myself anymore when I look into a mirror

I sweat, and probably stink! I think smelling is better than risking Deodorant, even though the BC/Deodorant link is sketchy. What about face creams and such? I have been using sparse amounts of Baby Oil, I have heard most moisturisers contain unlisted estrogen, and they all seem to have parabens too....so much to worry about.

jancie - so sorry you aren't sleeping...is it the steroids, or worry? I would certainly recommend walking every day when you are up to it - exercise also cuts the risk of recurrance by 50%!

My head was prickly when I first buzzed it, I guess enough has fallen out now that it isn't bothering me. I don't have that shiny bald look though....

thanks Denali for that tip as I am guessing I am about 2 weeks out from losing my eyebrows.

I use Secret deodarant - strong enough for a man but made for a woman   Didn't realize there was an issue - I don't have any open wounds.  I didn't use it much after my SNB until that healed up but I can't go around smelling.

Kerry - I don't know what it is with the sleeping.  I was doing fine before I started chemo and then everything went to heck really fast.  The ambien no longer worked and then valium quit working.  So I got a third prescription that is supposed to work but isn't.  I know that it is hard for me to shut off my brain but I don't necessarily worry per se.  There are nights like probably tonight where I will be so utterly exhausted from lack of sleep that it won't be an issue.  I am taking 2 mg of steroids for 3 days after treatment.  I haven't taken any steroids in 7 days you would think it wouldn't be having an impact on me.  I am meeting with my oncologist on Wednesday and believe me we will be discussing this issue.

My scalp is still sore today from the tiny pricklies!  I will be glad when they are gone! 

I will let you know if I can't sleep tonight - I will be back here posting

Jancie & Michele--Thanks for the suggestions.  I plan on going to Wal-mart EARLY tomorrow.  A couple of weeks ago I was in there at a "peak" time and suddenly realized I was in the middle of so many people who were coughing, sneezing--not a smart move.  I looked for deodorant that wasn't an anti-persperant, but couldn't find anything. 

KerryMac, at the LGFB class I attended, we were given an Avon moisturizer--I really like it.  I'll check on the specific name tomorrow-- Right now I can't overcome the gravity that keeps my butt plastered to my recliner.   Helen 

Helen

Look Girls - Fresh Meat - Jenn is aboard with us! 

Jenn - don't mind me - I am the one that is so sleep deprived I am starting to (darn chemo brain - can't think of the word) hallucinate - nope that wasn't the word.  Let's see - I got maybe 3 hours of sleep last night and here it is 11 pm and I can't sleep and I have to be up by 8:30 a.m. to get ready for church.  Thankfully there is a couch in the women's bathroom so I think I am going to bring my pillow along with the blanket I always have with me and take a nap if I can.

Looks like you are one day ahead of me.  I finish my A/C on April 1st and then go on to Taxol x4.  Oh my gosh - I just saw the date you were diagnosed, 2 days after me!  I got diagnosed on December 30th.  I haven't had surgery yet though - mine will be after chemo.

I don't know what TX #3 will do to me, one thing for sure I am going to be drinking lots of water.  I fell down really bad on that this last treatment and I think that is why I stayed nauseated for 8 days.  I also have chemo fog so I tend to repeat myself

Kat4pink - how are you feeling????????  Check in with us!!!!!!

Webbie - I am going to ask for Lunesta - why not try it?  Nothing else has worked.  Do you realize how much money I could make if I sold my sleep aids on the street?  Between the Ambien and then the new prescription - I am swimming in sleepy medication that just doesn't work!

The last anti-nausea pills they gave me - the ones I had the allergic reaction to - Zofan or something like that, I am going to give them back to Target Pharmacy and have them dispose of the drugs because I am tired of getting these looks everytime I go in there with more narcotic prescriptions and nausea prescriptions.  Maybe they won't look at me weird if I hand them the bottle and tell them - I am allergic to these - get rid of them and at the same time give them paperwork for more narcotics

I am going to head upstairs and see if I can sleep.  I have to move my cat who decided to curl up on my pillows that I stacked up since I put fresh sheets on the bed.  Of course she is going to protest quite loudly.  She will then move to the foot of the bed and guard the bed so that Abbey my dog will be too scared to jump up into bed with me as my border terrier who weighs 32 lbs is scared of my 11 lb cat who owns the house.  My husband and I are merely guests here.

So, Kristine, what did you think of BSG on Friday? Building up to a huge finale next weekend. I can't believe it is nearly done. And of course I have Tx #4 next Friday, hopefully I will be in a fit starte to watch it!

Webbie - sorry it is hitting you so hard. Two weeks is not much recovery time, I am grateful I have the extra week to feel normal again.  BUT, #4 under your belt means you are nearly done, so hang in there and focus on the end point.

Jenn - welcome! Great that you have found us, it has made going through this so much easier for me. And everyone knows how you are feeling. So venting/ranting is totally allowed!

So, my husband and I are taking advantage of my Mother being here and having a day out today. Lunch, then a Matinee Show (Jersey Boys, not sure if anyone has seen it??) then a drink or two before heading home to put the kids in bed. Going to try NOT to think about the whole cancer thing for the entire time. Bet I can't though!! The sun is already shining, I am feeling pretty normal, so I am going to try and just enjoy the day. Hope everyone else has a good one too.

Thanks for the words of welcome ladies.  A little more about myself.  I live in CT and have four kids and I am a teacher.  I am going for treatment in NYC at MSK.  When I shaved my head my girls took part and helped.  I think they are getting used to seeing my bald head so thank goodness I don't have to wear a wig when in the house.  They are so uncomfortable.  We have a big old yellow lab and are currently dogsitting another one for a friend so the house as you can imagine is pretty active.  Today the plan is to get through the day and not yell at anyone I am getting a little cranky because I have not slept well in weeks.

Jenn 

Jancie - you poor thing! I can't imagine being so sleep deprived! I don't remember - did you try Ativan yet? It worked wonders for me. I hope your oncologist can get to the bottom of your sleeplessness, so that you don't have to go on like this.

Jenn - Welcome! You and I are neighbors - I live in Newtown, CT - what part of CT are you in? I'm also being treated at MSK. Who are your Breast Surgeon and Plastic Surgeon? Mine are Dr. Sacchini and Dr. Mehrara.

Sorry you're having such a hard time, Webbie. The idea of getting chemo again when you still haven't recovered from the last tx is scary. Just keep resting and hydrating, and it WILL be over soon.

As far as the deodorant thing goes, I err on the side of using the natural stuff, which tends to be deodorant without antiperspirant. The Kiss My Face brand works well for me, but you definitely still feel the sweat, which takes some getting used to!  Also, you have to go to a health food store to find it.

I'm struggling with how depressing it feels to know that on these bad days, for at least a week following chemo, I can only plan to sleep, sleep, sleep. It makes it hard to control my negative thoughts. Anyone else struggling with this?  Maybe it's because I planned it so that my ex has my girls each weekend following my treatment, and it's just too many days stretching out alone.

Well, I'm checking in again....from the hospital    I went into ER last night, because I've been having a weird pain under my ribs on the left side....felt like a stabbing gas pain, for 2 days. 

So they do tests, send me home saying I'm fine, then call me back and say, oops, you have a pulmonary embolisum (sp?), get back up here!  So I am getting blood thinners, and antibiotics since they also think I may have early pneumonia (which I don't, I feel fine).  The blood clot could be caused by many different things, my mom started getting them when I was very young, so not even sure this is cancer-related, although for some reason cancer patients are more prone to get them.  I've never been treated for one before.  , more to worry about.

My 3rd AC was my hardest, I didn't leave my couch for days on end.  My heart was racing alot again, which really bothers me the most.  I'm supposed to have my last AC on Tues, but not sure what they'll do now.  My onc will probably come see me tomorrow.

buddy1:  I put lemon in my water my first tx and loved it, but haven't liked it since!  Weird how tastes change.  Now I'm not drinking as much water either, since it makes me nauseous without the lemon.

susan13:  my sinuses have been bad this time, too.  They didn't bother me the first 2 tx's, but I've been waking up with such dryness, and a headache.  I'm gonna buy some saline spray and see if it helps.

web:  I know how you feel, I can see a curb being hard to climb on my bad days, too.  I really hope you feel better soon.  Hang in there, the end is in sight, you can do this!!!  I'm sorry, that doesn't really help, but I really do hope you get a good day soon.

I'm gonna rest, didn't get much sleep in the hospital (darned learning hospital, someone is in my room every other minute, honestly).  The food here stinks, and I will be glad to go home tomorrow.

Hugs to all

Judy

i put chap stick on the inside of my nose for dry sinus... the saline solution is a little caustic for me.. or aquaphor.. just rolling it in with a cute tip.

i am trying to ignore that the inside of my mouth is falling out cell by cell and my neuropathy.. i am drinking enough glutamine powder.  remember to check for thrush.. that yucky white stuff that coats your tongue.  i have a prescription that kills if readily - i find i use less than they recommend and let it stick around inside my mouth for a longer while.. using it at the very first sign of 'infection'.

took a rest today.

hugs to all.

Well i had my 2nd A/C treatment on Thursday.  Been feeling nauseas and weak.  But so far not quite as bad as my first treatment.  But my problem last time were all my blood counts were low the following Thursday and I was very weak.  I was suppose to work this weekend but had to call in and I am suppose to work in the morning but not sure if I can or not will have to see how I feel in the morning.  I don't have to go in till 12 if I am able to.  I hope everyone is feeling okay.  I can't wait too get all this over with. I still have 2 more A/C and 4 T.  I also will start herceptin when I start second part of chemo, then surgery (still not sure if lumpectomy or mastectomy)  have to see how chemo works.  But I am leaning to toward the mastecetomy.  Any thoughts and which is better.  Then I have to have radiation after the surgery.  I also will do the herceptin once a week for a year.  It feels like this is a never ending story.  How have you all gotten through.??

 I also have a hard time drinking plain water.  About the only thing that taste good the first couple of days to me are ginger ale or sprite.  They keep me from feeling too nauseas.  I am not taking the Emend this time so I haven't had the headaches and as much as the fog as before.  Don't know if its because of the emend or because my first time I had to get use to all the new drugs in my system.. Never been a medicine taker unless sick.  Which hasn't been much other than taking Thyroid medicine. 

Well I have propably bored you all so I am going to close for now and try to go to bed.  Hope you all have a good night.

Forgot to add that I got my Buff head covering the other day. I basically twisted it to look like a cap although it looked a little puffy on top. I like the design but will have to play with it a bit more to get the best look. I'm happy to have it because most of my hats are heavier and won't be too good for the warmer weather. I love the weekends for many reasons but BC-wise I love not wearing my wig. Monday coming up and back to the wig .

stillme - guess what I woke up to this morning too! I thought I would be done with it too, have even thought I was having mild hot flashes....Oh, well, guess some part of my body is still working. I have an Onc appt tomorrow (need prescription for more decasone before starting the Taxatore) so will ask her what is normal....

Stillme...

I also heard that I would go through chemopause.  I thought GREAT, I am 49 years old, my tubes are tied, don't want children, can't have children so might as well get menopause over with.  I have been perimenopausal for years now dealing with hot flashes (mostly at night). 

Treatment #1 - start my period 5 days later - lasts for 5 days

Treatment #2 (my treatments are every other week) - Start period 8 days later and still going and VERY HEAVY.

Treatment #3 - is this Wednesday

So basically my system is all screwed up!  Instead of hot flashes, I now get the chills. I went 11 days in between periods this time and I was always so regular on a 28 day cycle.

 Liz - I take Ativan for 5 days after chemo to help with the nausea but it doesn't help me sleep.  He only prescribed 1 mg - wondering if I should double dose myself on it?  How much are you taking at a time?

My negative thoughts are always "I am going to go through all of this chemo crap and probably get cancer again".  I am pissed there are no guarantees NO MATTER what course you take in this fight against BC.

I am not going to worry about deodarants, etc.  I am just going for "moderation" these days.  I think about all of the women that supposedly were doing the "right thing" and they are getting BC.  Women that exercised regularly, ate the right foods, never smoked, did the organic thing, didn't overdo the caffeine.....they get cancer.  I figure there will always be studies out there that you shouldn't do this or that and if you listen to some of them it tells you that you should never eat any animal based products so basically become a vegan.  Nope, not going to happen.  God intended for us to eat meat, he provided it to us and I am going to eat meat!  I guess what I am saying is if I took each and every one of the studies seriously then I would never eat anything but plants, drink nothing but water and never bath with soap, which means I couldn't use laundry detergent - I think you get my drift.

Susan13 - sorry you are having such a hard time!  From what I have read, the A/C will make you lose all of your hair.  The taxol or taxotere will just thin out your hair so you could lose up to 50% of your hair on those chemo drugs.  Of course if you do A/C first then it really doesn't matter because you don't have hair going into taxol.  I am hoping my hair starts growing back while I am doing my Taxol regimen.

Judy - Gosh that must have been so scarey!  How are you doing now?

Sue From FL - I would think they would want you to wait in between treatments.  I say this because I had my SNB, they had me wait 3 weeks before starting Chemo.  Once I am done with Chemo I am to wait 3 weeks before Surgery.  After Surgery I am to wait 3 weeks before starting radiation.  They want your body to get strong again after each type of treatment.  I can't think of any reason why you couldn't wait a month between chemo and radiation if that is what you want to do.

Apple - I use aquaphor also but I use a Q tip not a "cute" tip - just giving you a rash of crap first thing in the morning because I like you.   Where do you get the Glutamine powder?

Diane - I am on the same chemo treatment all for the purpose of shrinking my tumor so I could have a lumpectomy.  There is no change in risk factor if you do a masectomy or a lumpectomy/radiation.  Neither procedure reduces your risk of getting BC again or cancer in another area of your body.  Since my risk factor can't be reduced by doing a masectomy - I am definately opting for a lumpectomy.  One of the factors that women consider when chosing one procedure over the other is the radiation treatments.  It is easy if you live close to the hospital because you have to do rads for 5 to 6 weeks straight - 5 days a week.  For those like Kat4Pink tht lives 3.5 hour drive from the cancer center, radiation is not feasible unless she moved temporarily during treatment to an apartment close to the cancer center.

I think the chemo fog comes and goes.  I don't think it has anything to do with emend, it is a SE of chemo.  Emend is supposed to be the wonder drug for nausea.    I also drink a ton of ginger ale but I found out when I was really nauseated that a coke would really settle my stomach quicker than anything.  I still drink my ginger ale because I really like it.

Susan13 - I don't have thrush nor do I have a coating on my tongue but I have certainly lost most of my taste buds.  I am finding it really difficult to cook since I spice everything to taste and lately I have been overdoing it a little bit on the spices according to my hubby.  I want to only eat spicy foods like Mexican food, Indian food, etc. because at least I can taste them somewhat.  So how long is this SE supposed to last?

Hey ladies,  

I am trying to gear up for #3 AC tomorrow.  I slept a little better last night thank goodness.

Elizzim- my drs at sloane are onc-Robson and surgeon was Montgomery and PS is Cordiero

Heading down to NYC tomorrow I think I need to buy a sleeping cap my head gets cold.  Today I am going to a support group for the first time.  Unfortunately I will not be able to attend it more often as I am going to return to work next week for the rest of the school year.  I teach 4th grade. I am nervous about having enough energy for my all boy classroom.  But I think the distraction of working will be good. I also am going to start PT for my arm where the nodes were removed I want to be able to have full movement when all this crap is over.  I am reading that some of you have symptoms from the Neulasta shot I am lucky that does not bother me but I am wondering about side effects from the next set of drugs that will start in April Taxol and Herceptin.  

Have to go pick up the twins from preschool. have a good day everyone.

I will try and post my diagnosis in my closing how do I do that?