November 2009-Starting Chemo

Melinda ~ yes this will be my last AC !  I have heard the Taxol causes neuropathy in the hands and feet as well as bone/joint pain that some say can be pretty bad.  And yes I will be on Taxol X's 4 for my next cocktail.

Funny about the blush ~ my scalp is so white, and my face looks so tan.  Makes me think of the toy I played with when I was little.  It was the man's face, then it had dark magnetic shavings and you had the pen you would drag the shaving onto his face and head.  That is what I look like.  In a scarf I look like a fortune teller, nothing on my head I look like Mrs. Clean, and with a wig on well heck I don't know what I look like.... someone's dead cat is sleeping on my head?!  LOL

Oh the joys of BC! 

Alicia   These boards are such a lifesaver.  My friends have been so understanding, co workers unbelievable, family terrific and DH ... has shown me an innerstrength neither he nor I knew he possessed.  It took me a loooong time to finally let go and lean on him.   BUT, the women I have met here help the most.  We laugh, cry and commiserate together as someone not going through this cannot.

Hello to everyone.  I have been trying to concentrate on work so not been on the board.  Such a lot to catch up with.

Cytoxin (funny I just noticed that toxin is part of the name), I get it over 60 minutes.  Everyone who gets headaches should request that.  My onc nurse offered that the first time and then said I could speed it up if I wanted.  I am happy to go more slowly and not risk another SE.

Someone mentioned smelling like chemicals.  I absolutely think I smell; certainly everything coming out of me smells like chemicals.  I was thinking of starting a list of things I won't miss about chemo and the smells would definitely be part of it.

I too start Taxol in January -- dense dose.  I am a little worried about the bone pain and neuropathy.  But I won't miss the fatigue.

So many of us on this board have teenagers.  I am wondering how everyone is managing Christmas (or Hanukkah).  My 14 year old is trying to be understanding, but she is young so she is inconsistent.  One minute she is fine and the next she is desperate to get the tree up.  I am also a single parent so I don't have anyone to fall back on.  I am most worried about the shoppiing; I hate shopping at good times and it doesn't seem to be anything I can delegate to someone else. 

Hope everyone has a good day today.

Shelley

Hi Deb   Welcome to the November board!

Toya  never heard of those SE before. I like the no dusting part, but I'm not going along with the 'no hot drinks' one. I need my tea to keep me warm!

Melinda  I definitely still have rough stubble. The sides and back of my head are quite smooth, but the top of my head is still very rough. I've been thinking that its because I've only had the one treatment so far. The rest of my body is normal"ish". My underarm and leg hair hasn't grown back since the last time I shaved, but my whosawhatsee (never heard that one before!) is thinning but not gone. Becca  never had any tingling other than on my head.

Michele  $2 for your Neupogen? I'm moving to Ottawa! 

This weekend is super busy.. I'm so grateful to be feeling well. My son has 2 hockey games, my daughter has her end of year gymnastics show, putting up the xmas tree, and a Danish Christmas celebration at a friend's tonight. Not to mention laundry, vacuuming, and general clean up. I'd better get moving!!

Cafelovr and Mommy2two

My husband went online and found the package insert for Cytoxan:

Stability:
Reconstituted solutions of cyclophosphamide are stable for 24 hours at room temperature, or for 6 days if refrigerated^{01}. If bacteriostatic water for injection is not used for reconstitution, it is recommended that the solution be used promptly (preferably within 6 hours).

He's more anal than I and at this point has much more energy.  I would have waited to ask on Tuesday but he got worried and had to know something right away.  He's satisfied - I'm still going to mention it on Tuesday.

Sue

Hi, Ladies!  Life has been busy, so I apologize for being so quiet...We are lighting our Hanukkah candles by the light of our Christmas tree; December is jus tone long holiday at our house.  Happy Hanukkah to all my fellow warriors who celebrate!

Tx #3 really did its work on me, but I started to feel much better yesterday. So far every tx has been just a little different in some way, wish I knew why. This time it has been more fatigue, a sore tongue, more of that "all over crappy" feeling and more ringing in my ears. Ah, well, just one more to go!  One little bit of good news is that they decided to move tx #4 from Christmas Eve to Dec.23, since most of the staff will be off the 24th. So I will be done one day sooner.

Someone asked about hair -- I never did shave all the way down, so I have always had stubble, but now it is starting to grow back a bit! Woo Hoo! I actually have little tufts in front of my ears that are around1/2 inch long, but very very fine. Leg and pit hair is still there but sparse and slow-growing -- I have shaved maybe twice and haven't really needed to. I really miss my nose hairs -- my nose is totally dry and sore. ( Funny, I would NEVER have imagined typing the words "I miss my nose hairs" in a sentence!)

DH and I went to his office party last night. I had thought about wearing a wig, since I had not seen his coworkers since I lost my hair, but he asked me not to.  He doesn't wan't me to be uncomfortable, and is perfectly happy with me in scarves and hats.  So comfort and my sweet DH won out. I found a lovely hand-dyed silk scarf at the gift shop where I work (an art education center), tied it over a stretchy black turban and off we went. I actually felt like a normal human being -- sometimes I forget about the whole hair thing and am surprised when I catch myself in a mirror and remember I'm bald! I am still figuring out where to wear a wig and where to go comfy -- is anyone wearing mostly wigs?  How does everyone decide? I am certainly not bold enough to go bald in public yet, but if anyone is, you go warrior!

 My onc will be away for my last treatment, so I am seeing him Thursday to check in --strange to think this part of the battle is coming to a close. Then on to rads and, as they say, "dancing with NED"!!!!

 Hugs to all --

Pam

JustmeAlicia,

Sometimes he's cute and sometime's he a pain.  But he's been mine for 29 years and I don't have the energy to train a new one  so I guess I'll keep him!

Someone wrote about putting on blush - I put on foundation and blush this afternoon and I had no idea where to stop.  I finally figured out that if my hat covered the starting/stopping point it really didn't matter. This is going to take some getting used to.

Sue

I am on day 5 after my #3 TX and it sucks as usual...but looking forward to switching to Taxol after New Year's.  So happy to read that many of you have heard it is an easier road.  Glad also to read all the posts re: hair as I was wondering where everyone was.  My DH cut my hair really close and it is just hanging out there for now - I wear a sleep cap so that I don't stick to the pillow.  I actually stopped shaving when I got my diagnosis so that I could look forward to at least something small in this process, but the leg hair has decided to be stubborn, so I might have to break down and shave at some point here. 

I have 3 kids under 10, so we are celebrating the holidays next weekend, before #4.  Making them wait for Santa would be too much torture in addition to everything else. 

SharaD: I am so sorry to hear about the tummy troubles.  I hope the plumbing gets under control soon. 

I hope everyone has a relatively relaxing and normal Sunday. 

SharaD - your last post made me smile from ear to ear. Thanks for the chuckle!

hey sisters

i am back in internet land which also means hospital land (thaland) after three wonderful weeks back in Yangon in a peaceful and healing enviironment (our wee home there)  aaaah.  

We left yesterday to come abc for todays chemo - No 3 our of 8, and I an glad to announce that it is behind me now .  I need a sicky face icon, and a fuzzy headed icon before I will be allowed the happy smiley icon i think,

Now just gearing up for the groundhog days again.........

hugs and warm wishes to you all

Hey hey.  So glad to hear from you, Cindy, and that you are recovering from all you have been through.  Sorry to hear the vein-thing, though.  I got on the internet yesterday to check out "How to tie headwraps" and saw the idea of tying a scarf on the side.  A great idea.  I thought that look was awesome and looks "elegant."

Had to chime in on a couple of things...a wig-person who has dealt with bc patients for years said to continue shampooing and conditioning your head, as if hair is still there (yea, weird), as your scalp can become so dry, it cracks.  The only place bald on my head is at the nape of my neck and bald patches on the sides.  The top still has lots of stubble, so I've been buzzing that to keep it more comfy than long stubble.  My onc PA said if I haven't lost all my hair before the Taxol, that the Taxol will make the rest fall out.  Pube hair has thinned out, and that started well before anywhere else. (Loved the chia-pet reference, as that is exactly what the undies looked like!)   Hair elsewhere has just stopped growing.  Wish the facial peach-fuzz would drop off!!  Like menopause, it just never does what you want...prior to the bc, I grew facial hair and the head-hair thinned:  A total injustice.

I am not brave enough venture out with the stubble showing, much less later when the "shine" is showing, though I'm envious of those who are that brave.  I wear my wig every time I go out the door; however, my wig is very comfortable and looks natural, something I see other women don't have.  I did tell my daughter the other night, when I put my wig on before her boyfriend came over, that I have to do what makes me feel comfortable about my looks, whether that means wearing a do-rag, scarf, going bare, or wearing the wig.   I do find myself wearing more eye make-up with the scarves.  And sometimes, I even forget about the head, too, until I look in a mirror and for a second, wonder who that is looking back.  This, too, shall pass, though not fast enough.

And since I see that several of us will be having our last A/C this week, mouse6694, Alicia, Sue, LVLinda, Kim, Shel (YIPPEE!!!), my onc PA  also said that the SE's of Taxol are much less, however the possibilities she then went over were scary to me, though almost all could be treated with meds, she said.  If the SE of tingling and numbness gets bad, ie travels up my wrists, to let them know, as they have meds to take care of it and the potential for it to be permanent is there.  Said  the SE are definitely cumulative (though they haven't been for me with the A/C so far) and that the first couple TX would not be bad, as your body is still thinking "A/C."  She also mentioned  fatigue (def. cumulative), joint pain (take tyl./advil), constipation (again, or still.  oh, goody), nail changes such as lines on the nails, brittleness, or the nail even lifting off the nail bed, and hypersensitivity during the TX or that evening, causing flushing and anxiety (can take benedryl).  Nausea is still a possibility, but nowhere near what it is with the A/C.   I see that there are only about 3 of us that will be getting it every week instead of every 2 or 3.  Interesting, I thought..

Alicia: I, too, start with the pre-TX jitters the day before and really have them the morning of.  That's when the Ativan I have is useful.

Happy Sunday and hoping everyone has a SE-free day.  Nette

Alicia, I am enjoying my daughter tremendously.  When she was young, I never understood those moms who just lived for the day their kids came home from college, esp. those with daughters.  Now, I can hardly contain myself when I know she'll be home.     We are very close and I can almost read her every thought.  She is, and has always been, wise beyond her years, naive in a good way, and is more emotional and caring than I could ever hope to be.   (She also knits, crochets, bakes, and makes jewelry:  none of which I do.)  Thanks for remembering she was here.  Good luck tomorrow.  Nette

Update : I did my 3rd A/C treatment Friday ,  I screwed up on my appt time, signed in at desk . Nurse called me in for blood work, and I still do NOT like my Port...It took her 4 times to get blood to draw ....I had to lay back in chair, then stand up, relax, breath deep, finally 4th try she got it...I thought it was to be easier having the port? Then on to my Vitals ..Nurse says "Honey what time do you think your appt is ? " I said 9...well its not until 1:30...She says "I wonder if the front desk was going to let you sit there until 1:30 to see my Oncologist! " ...so My hubby and I went christmas shopping then came back..I talked to my Oncologist about the Neulasta shot being given same day as chemo...and she said it would not cause me any SE from doing it same day .  I guess it depends on the oncologist as my Chemo nurse told me that one Oncologist never lets his patients have it same day...So down 3 One more to go.....This time less SE, I can eat and things dont taste as bad ..I dont have the nausea feeling this time like the first two...I am just sore today from the Neulasta shot...Hubby helped me make pumpkin Chocolate chip bread for the holidays....Im going in Hot tub and then watch Giants vs Eagles..They did let me schedule my last a/c for the 28th of Dec. instead of Dec 24th...Im so glad.....My surgery is for Jan 12th....