January 2012 chemo

Wig shopping FAIL. My partner and me, along with two of our good friends, just escaped from a salon supposedly specializing in wigs for women like us. I'm pretty sure the guy had been doing coke all night - he was so amped up. Also narcissistic. We got as far as trying on a couple of things when I saw my three compatriots leave the room to confer. I knew he was fired then. We left with a non-committal 'call you later after we decide,' and scooted out of there. 

For this experience to work, the product has to be good, but the person guiding you through has to be good, too. Or at least not on drugs:) Now back to square one.

Annie 

Annie, sorry you were tortured at the wig salon.  Did you get a recommendation from your health insurance carrier?  Mine provided an allowance for a "cranial prothesis" and gave me a list of 5 or 6 places I could go.  Another idea would be to ask at the oncologist's office -- they should have an idea of a good place.

I ordered a wig through the insurance -- it's pretty good quality, similiar to my own hair, but hot to wear -- so I ordered  2 cheap lightweight (and very different in color and style) wigs from tlcdirect.com from the American Cancer Society.  Maybe you can check that out as well. 

Peggy - I too am craving starchy carbs and some protein.  The 'white' food group goes down best - rice, pasta,mashed potatoes, bread or toast, crackers, etc.  For whatever reason, I've been wanting hamburgers.  This is new. Grilled cheese sounds real good right about now.

CharB22 - Do you get the neulasts shot?  That should help with the wbc.  I hope they figure out what is going on!

FLDREAMER -  Sounds like you had a fairly good first tx.  Hope you are still doing ok.  I love my port too!  I wasn't going to get one initially, but rethought that decision when a chemo nurse took a look at my veins. So far its been great!

Waitress - You might get to like the freedom of no hair.  My shower is so quick each morning! No shampoo, condition, rinse.  No shaving.  I barely get wet these days.  Nothing left to do. As for the steroids - I hate that feeling!  I get flushed and jittery.  After AC I will get taxol.  Apparently they will give twice as much dex during those txs.  I'm not looking forward to that.

Judy - I found myself an emotional wreck after surgery.  I was crying all the time.  Now, I'm a little better.  However, I do have the occasional cry session.  Last night I cried for a young man that I don't even know.  My daughter sent me a text as I was getting ready for bed.  She came upon a suicide scene as she was crossing campus.  I young man ended his own life right on a busy walkway in the center of campus.  I just broke down and cried for this sad young man and his family.

Annie - I was fortunate.  My wig lady was just what you would want when trying on wigs.  Sorry you didn't have the same experience.  There must be other wig shops to try.  Also, as Joyce mentioned, TLC has some inexpensive wigs online.  I ordered one. I'll let you know what the quality is like when it arrives.  I bought one on wigs.com but it was not very nice.  It did not look like the online picture.  Keep looking, you will find something that works.

Lumpynme - hang in there!  Feb 13 is right around the corner!

Janetanned - yup, got the Neulasta shot and even with that, my WBC is "extremely" low. Ugh. I think it might be kicking in though because my back is starting to hurt -- this is one week AFTER I got the shot.

I got my scarf from tlc.org today. I didn't think I would like a scarf - screams "cancer patient" to me, but I put it on because my head is getting cold. I've lost a lot of hair, but haven't shaved yet. I think I might just like this scarf after all.

CharB22 - I had not had any pain from the neulasta shot after the first tx.  However, last sat morning, one week after the 2nd shot, I woke up with a very strange pain in my lower back/hip region.  It was a pulsing deep pain that kept me awake.  I eventually took an oxy, which knocked the pain back so I could sleep.  I was a little achy all day sat, but not bad enough to take anything for it.  I asked my mo today when I went for tx#3 if it was due to the neulasta.  She said that it likely was related to the shot.  She said to expect pain (if you are going to have pain) on days 7-10 after the shot. 

While talking to the chemo nurse today, we got talking about ports and how they are for different people.  She asked if I was given the choice to have a port placed under my upper arm instead of on my chest.  She has seen a few and really liked how they were placed. I didn't realize this was an option.  Has anyone else had this option.

Rachelvk--help me--where is the dealing with treatment? i'm not seeing it and want to read your letter!

thx!

Last weekend my head was extremely itchy.  Now since Wednesday I have gone from being itchy to my scalp being actually painful to touch and the dreaded hair falling out has started.  I have an appointment on Tuesday with my hairdresser after infusion #2 (always multitasking) to see if we will just cut off a few inches (if there is anything still left by then) or if it will all have to go.  I knew it was going to happen but when it starts it just hits hard.

lumpy - here's the link. It's under the Help Me Get Through Treatment and titled "A Letter to my Friends.."

http://community.breastcancer.org/forum/6/topic/782068?page=1#idx_20 

Annie - Sorry you had that bad wig experience. There are some good places out there that really do a good job, but I guess you have to search sometimes.

CharB22 - It's out of the Princeton area (89.1 or online at wwfm.org). We're 24/7 classical. Also, if you need a recommendation for a good place for wigs, PM me - I ordered my wig the other day at a place in East Brunswick and was pretty impressed with the help I got - though I already knew what wig. But when I asked about shampoos and other things - which they sell - she said I was fine using Pantene. When an employee doesn't try to sell you something, that says something to me. 

rachelvk  thank you!

Hi all,

have been reading for the past 14 days but not well enough long enough to post,

 I am now day 12 after second infusion and I gotta say it has been hell. Sorry no other word for it.

 I too hate being bald and I want the party to be over and to go some where else to play , any where but here, every day I think I don't know about fronting up for 3rd go , 

Thanks Janetanned for asking about my knee. The xray showed arthritis which I knew , so next step is to get my Rhuemy to give me a referral to get a MRI. Referal from her means no cost , from my GP cost is $350-500 Australian,

So will be doing that soon, as knee is getting more painful all the time.

 But lets see.. since last infusion  I have had

thrush all through mouth.. Nilstat oral drops were the only thing that worked

cracked lips at corners (ongoing) got script from gp for Kenalog optic ear ointment  ) had tried everything else

sore scratchy eyes continually .. using terra tears eye gel at night and systane lubricant eye drops during the day( I don't know if they are just Australia brands but they are pretty basic stuff here)

severe headaches and feeling like my head is in a vice all the time (can't do much about this cause I am on MSContin 120mg a day for Fibromyalgia)

Fatigue that you could cut through with a very very big knife

Got hthe thrush under control, now have dry mouth 24/7 swilling the Biotene like there is no tomorrow

Haven't seen family (other that hubby) for over a week  because I don't want to pick up anything and I can't cope with any one in the house, just talking on the phone is a killer with my mouth sooo sore, we all txt through the day. and play words with friends on the iphone , takes my mind of stuff.

They drop of food and books etc I feel like I'm marooned on an island

Cry every night at 6pm as my hubby walks through the door... I then go to bed and eat tea and watch more tele in there. He comes in every half haf hour to check on me.. I know this might sound strange to some but he works 6 days a week and I figure he needs some quiet down time with out me going on and on about how sh@t I feel. 

yesterday I ralised I was suffering from finger neuropathy in my fingers.. oh joy.. I feel like what ever is on any list i'm going to get it and yes I know there is 2 big ones starting with V and D ( don't wanr to jinx my self by saying or writing the words out loud  LOL.  

 Oncologist says getting everything is because I have Fibromyalgia and with that you have low immune system anyway so getting this poison in my body just means I get to feel like a truck is running over and over me all day every day

ok thats it ,will stop whining now, I'm sure some one ,some where is doing it harder than me .. I have good family and hubby to help get me through this rotten trip.

Hopefully next week things  will be sorta ok before we get on the train again.

PS.

Watching the news on tele, headlines here are some states in Australia are looking at banning sun tanning saloons over the next few years.. hopefully the laws will be passed and no other young girls will go to them with the idea of getting a tan and and then finding out they have skin melanonas and possibly looking at a death sentence.

bye for now all Lynne 

Ely - I wish I had been given the arm option for port placement! While mine has been ok, I too had BMX followed by DIEP reconstruction and am sort of tired of all the scars.  However, I just thought of something.  Maybe it wasn't an option for me since I really can't use my left arm for any surgery since I had AND on the left side.  Is your port on the left?  Maybe that doesn't matter? Oh well, what is done is done.

My daughter goes to Temple University in Philly.  There have been a number of hold ups,sexual assults and one murder near the campus over the past year. It is not a good neighborhood. But she was right on the scene, walking to meet a friend, when this event occurred. She was so upset. He did it in broad daylight in a very popular gathering place for students. Just so sad!  I can't imagine how the family is dealing with this.

Hotlyn - I'm so so sorry you are getting hit with everything.  You really need to pamper yourself as much as you can during the bad days.  Keep thinking that there is an end to this torture.  Your treatment will come to an end and you will experience a new normal some day soon.  In the meantime rest and take your meds,   ((((Hotlyn))))

Wavewhisperer - I just finished my scrambled eggs and bagel!  Its all about the white, tan and yellow foods for a few days.  I'm just glad that I can keep everything down.  Maybe grilled cheese tonight! Although, I am making chicken soup this afternoon.  That is sort of the right color.

Well, it's been one week since I had my head shaved and I've had to come to grips with the dizzying array of options to cover the noggin. The look I am going for with scarves is the "Grace Kelly zipping around in a convertible in Monaco". The look I seem to have is more" Fiddler on the Roof".

I used to always quote Billy Cyrstal as Fernando on Saturday Night Live-"It's more important to look good than to feel good". No longer! Right now I am so glad that I actually feel good! My next treatment (#3) is Tuesday, so I'm holding on tight to this feeling.

Good weekend everyone!

NCbeachgal and Momof2inME:  I had borrowed some oblong scarves from my mother (circa 1960's) but have found they're not wide enough to cover the entire back of my head.  I had heard about Beaubeau's from another poster a while ago, and broke down and bought three of them on Tuesday night - they were on my doorstep on Friday morning, just in time for the Big Shave.  I, for one, am in love with them.  I have tried a wig, and really can't stand it for longer than a brief moment.  I have some great cloche-type hates that'll be fun.  But the Beaubeau's almost make me feel like I have a little hair to play with, they're pre-tied, they're colorful, and I feel pretty in them.  If you're interested, you can find them at 4women.com 

First, I want to thank you all for the recommendations on Claritan. I had heard a little about it before my 1st treatment but when I asked my oncologist about it, she said she hadn't heard about it. So I didn't try it with my first Neulasta and boy, was I in pain for several days. So I did for my 2nd and either the Claritan or the fact that the 2nd one isn't as bad did the trick. Either way, I am so very greatful for all of your posts.

So I had my 2nd AC last Thurs, Jan 26. The first 3 days post treatment were incredibly easier than my first treatment. My husband and I both were relieved and thought that those SE's were actually doable. BUT then Monday came. I went back to work for a full day and was exhausted and feeling awful. Tuesday was worse and I only made it half a day. Wound up in the ER on Tues night/Wed morning with a 102 fever. After tests, they determined my white blood was on the low end of normal and sent me home. On Thurs, with fever still persisting, I had my counts retested and then was admitted to the hospital immediately. Been here since then on antiobiotics. Counts dropped more on Friday. Back up a little today but not enough so I will be here at least 1-2 more nights. Tough with 21 month told twins at home. Our schedule was ridiculous before cancer.

Anyway, I don't appear to have any serious infections. So it seems just a bad cold which my whole family got obviously hit me hardest. And the best part is that my oncologist said its unlikely they'll postpone #3 which is coming this Thurs. I don't know what to do about work. I just can't be out this much so I guess I have to consider disability.

So anyway, everyone at work is sick-there seems to be something going around. I know you all know already but stay on top of your hand sanitizer and take caution when going out. Although my oncologist says people rarely end up on the hospital like this, It can happen, so take care of yourselves!

I also loved the Grace Kelly/Fiddler quote. That's me, too. Haven't used scarves, except when my hair was thinning and I didn't want to shed all over at work.

Good luck finding hats and other things. I've started to like the turbany things with the little knot up i in the front. I actually wore one at work the other day and felt comfortable - and got a lot of compliments.