January 2013 chemo group

SherylB, 

Same here - I read about Claritin on the Triple Positive thread and then elsewhere on the threads.  I'm so grateful for this knowledge exchange here and can't imagine going through this without it. Of course, I'm also grateful for the camaraderie!  My husband and I are basically on our own out here (we're hermits) so the interaction with others who are going through this so helpful. 

I hope the rest of your day goes well and hoping the adjusted cocktail is a winner!

Many thanks for the feedback Lee, Sheryl, and others, about my descent into late afternoon/early evening gloom. I hope that with the time change  and warmer weather it will subside! I have great respect for the unconscious and I'm certain that the continuing process of coping with BC diagnosis, surgery, chemo, etc. is rumbling along despite my decision to focus on the present most of the time. Looking forward to sitting on the deck in the late afternoon/early evening light this spring and summer with my giant water bottle and my laptop ---> open to these posts!

Always grateful for the inspiration, advice, progress reports, and laughs, Martha - who now has a Marine hairstyle courtesy of 2 rounds of AC - a salt and pepper colored buzz on the top and bald on the sides - but that could change tomorrow !! 

My hair started to shed today (exactly 14 days after my first TC), so I just got it shaved.

Feeling depressed

Just shaved what was left of mine tonight. I initially cut it really short with the scissors, then used the clippers to get it to 1 inch. That lasted for 2 days. It was so itchy & messy that i could not stand it anymore. I used the clippers to get it down to about 1/8 th inch & then shaved. It feels so much better now. I was a wreck on Tuesday when it started coming out but not tonight-i'm shocked at myself as I thought it would be a repeat of Tuesday. I think we are stronger than we give ourselves credit for sometimes. Positive thoughts your ways ladies!

chgogemini- I'm so sorry you are having a hard time with your hair. I had my DH use his clippers at a #1. I left it like that for a bit then told him to go to a #0. It was really hard to stare at myself in the mirror at first. This was the hardest thing ever. Please remember that it will grow back. I knew I had to do something to take control of my hair fall out. That's why I had him buzz it. Hugs to you honey...

Nicole503, I talked to my MO about Glutamine and she advised me that the jury was out on whether or not it does anything to protect against neuropathy.  That in itself is not sufficient reason not to take it.  However, single amino acids apparently can be tough on the liver when some of the liver enzymes are elevated.  Apparently the taxanes elevate liver enzymes quite commonly, those being AST and ALT.  So, I would talk to the MO about taking Glutamine.  It has a lot of positives for it, but if your chemo regimen messes with the your liver enzymes, that’s something to be aware of.

Kingboo and Melibt, I had the 6 mg dose of neulasta the day after chemo.  On day 11 or 12, I thought I had a fever.  I was feeling off all day.  Wasn’t eating or drinking enough.  Took my temp and I thought it was 100.8.  Called the MO and was to the ER.  Didn’t have a temp in the ER, but my heart rate was really elevated.  The ekg’ed me, put me on monitors, drew blood, then two sets of blood cultures and gave me 2 liters of IV fluids.  My white count was at 22,000.  My MO told me that when our white counts go high we feel sick even when we’re not.  The next time I had chemo, the MO cut the dose of Neulasta in half.  No problems with fevers or feeling disinterested in food and drink.

Kiwikid, so nice to hear from you again.  We are both Holly’s.  I’m glad you’re back to work.  How’s it going?  If I recall you were a bit worried about heading back to work.  Thanks for hopping back in even if only for a moment or two here and there.  Every time I hear that "Fix You" song, I break down in tears because I just want my lungs fixed.  Love ya, Bella.

Smethot, I lost almost all of my hair.  Some of it seems to be growing and it looks really weird.  I’ll try to take a shot of the pattern of growth as best I can.  I’m having TC x 4.  My hair started coming out in droves on day 12.  I pulled most of it out, but a patch of long straggly hair in the back.  The next morning I cut the long hair so I had a boy’s cut.  The next day I had my husband buzz my head.  Apparently, because I had chemo and radiation for Hodgkin’s in 1985 and then 1987-88, my Hodgkin’s MO and my current MO agreed that I should get 60 mg/m2 of Taxotere instead of the standard 75 mg/m2.  That might account for the residual hair and some regrowth.  Now, there’s another thing to worry about.  Will 60 mg be enough to kill whatever little bastards might be left behind?   You go, girl, on those minimal SEs!  My medical team is at University of Chicago.  My MO is also a molecular biologist and professor at the university.  I came to her with a list of supplements and vitamins and minerals I was taking.  She was fine with all of them.  However she is not a big fan of single amino acids.  Especially if liver enzymes are elevated.  So, I would advise talking to your MO about carnitine or glutamine before you take it and after you’ve had blood work to confirm no elevated enzymes.  Also, I’ve had no constipation or diarrhea since my chemo started. I’ve even taken Percocet during both previous cycles and still wasn’t constipated.  I’m taking a TruNature chewable probiotic.

LeeA, I think taxotere and taxol are taxanes and come from Yew trees. And there's some older research that studied the benefits of giving taxotere and taxol in doses every three weeks and in doses weekly.  The risk of early recurrence seemed to be reduced for taxotere takers at the three week schedule while the overall survival seemed better for the weekly taxol takers. But that study was from 2005.  Who knows now.  I'm too tired to do any more research.  However, the bottom line is that taxanes seem to be far superior to the previous poisons of choice.  

Hi everyone,

I am going to be the first to post my transformation at Shannon’s suggestion from long blonde hair to mouse brown wig.   How do you post photos?  I need to provide a URL which is confusing me.

J 

7:30 a.m. Read chgogemini and kingboo post about losing hair and shaving heads. Sent big cyberhugs along with the hope that they feel more comfortable soon. Like today.

7:45 a.m. Decided to shave away what remained of my Marine cut that, as I suspected, almost but not quite disappeared last night and then took a long shower.

8:00 a.m. Read Shannon's post and doubled over laughing. New word for the day = divot.

LeeA,

So far so good on the SEs just super tired. My hgb and hct are low down from 12.9 to 10.5 since I started so fatigue will come along with it. Going for my nuelasta in a couple of hours and really just want to sleep. The trip to the MO office is an hour each way and then I can hibernate for the rest of the day.

Hugs, Sheryl

I'm climbing out of the last A/C rabbit hole and starting to almost feel human.   I am really excited about returning to work on Monday.  I will work from home due to the immune system, but man, I am so looking forward to the insanity, absurdity and chaos known as 'work' and I swear that I am going to remember to feel grateful everytime something stupid happens because it means I am surviving!

Nicole - So glad the first date with Taxol went smoothly.  They plan to load me up with Benedryl and steroids the first time, so I suspect I won't be as clear-headed as you were.  My MO prefers to go in prepared for the worst, I guess.  If I don't have a problem, they will lighten up on the pre-meds in the future.

Oliverhog - If I continue to have fevers with high white cell counts,  I may suggest they reduce my Neulasta dosage.  I am glad you mentioned it.  Sometimes,  it just feels like my immune system is in overdrive.  It is good that we can share these experiences and help each other out.  Hope you are feeling better soon.

Hope everyone is able to have wonderfully good moments this weekend.

Forest, that's a great idea, but is chemo hair safe for the little bird babies? Ijs

Hi everyone,

Being brave and posting my transformation! Thanks for the image tip Lee.  No idea if it's going to show up.  It might take me a few goes!

Hre's the link too:  http://i.imgur.com/VFT9EWO.jpg

I have had long hair for the past 10 years which has gotten blonder and blonder to hide the greys (my profile pic is a sentimental one of me breastfeeding my first child 4.5 years ago when it was still brown). I went from long blonde to pixie, then to # 2 buzz (with a wholelotta grey), and now to patchy mish-mash.  I think I look like a hard-core lesbian with the buzz cut and a few family members also kindly brought this to my attention.  My head fortunately is an OK shape and my ears snug to my head. My Mum pointed out a birth mark on my head she hasn’t seen since I was a baby! My kids don’t bat an eyelid as I transform from nude nut to brown blow-wave.  Bless their cotton socks….

My wig I am told (but who knows if people are being truthful) is convincing.  I am doing FEC (similar to AC) and my hair started falling out in clumps on day 12 post treatment.  Losing it is depressing and terrible but I am getting used to it (and the wig).  I felt very self-conscious wearing the wig out for the first couple of weeks.  I am sure people thought me a terrorist or mentally ill– no eye contact and very brief conversations with people in shops etc.  I tell anyone if given the opportunity (except complete strangers) that it is a wig.  It makes me feel better.  I figure if I point it out first, they won’t feel awkward (because I assume they’ve noticed it), but my rationale is pretty dumb.   My wig is comfy (except for on these schtinkinly hot summer days and windy beach walks!) and the brand is Ellen Wille.  It can be parted on either side and you can see scalp through the front plate (it has been designed to be see-through at the part-line).  I chose a colour pretty close to my original hair colour as I wanted to be less conspicuous.  Today I wore it shopping all day and forgot it was on my head.  The people I feel weirdest about wearing it around are acquaintances – the people you don’t necessarily want to tell your whole breast cancer story to. Some of the mums at my son’s kinder have noticed that my hair is different, others haven’t said anything (too polite or completely haven’t registered).

I don’t like not having hair but am getting used to it.  My features feel triple the size on my face.  I am thus far hanging on to eyelashes and eyebrows but suspect they will go too.  I will find these the hardest to lose.  My eyes have been my defining feature my whole life and without my lashes and dominant eyebrows, I worry I will feel disconnected.  Let’s see.  No point counting chickens.

LeeA and SherylB, the Claratin seems to have helped this round.  No bone pains at all.  I took it one day prior to the shot and 6 post.  Thanks for the tip.  My onc also didn’t know about it.  News mustn’t have travelled via carrier pigeon to Australia yet  Yesterday I had a freakish amount of energy so made the most of exercising and getting housework done.  This time last round, I was doubled over with pelvic pain.

Oliverhog, thanks for being the font of information.  Were your tests OK?  

Nicole503, I also take a swathe of supplements and Co-Q-10 is one of them. Somewhat controversially I am taking anti-oxidants during my chemo. There are 2 schools of thought on them and I have decided to take them with my Onc’s approval.  She is OK with anything as long as it’s not intravenous!  Talk about a wide realm of possibilities!!  A bit scary.  Hope49, I  am with you on the discrepancy of info out there.  For me the supplements don’t help much with the post chemo 5 DAYS OF DARKNESS but they are helping with my overall energy levels.  I plan to take glutamine when I start Taxotere in a little over a month.

Bryona, we miss you!!  Hope you are well enough to post again soon. 

Martha323, I rollercoaster a lot at the moment.  When you think that most of us have gone from being healthy (well we thought we were) to boob removal, radiotherapy and chemo all in the space of a couple of months, I think we’re allowed to feel a bit bleak from time to time!  My problem at the moment is brutal honesty and knowing when to temper it.  I have ZERO tolerance for effers (pinched your word Mandy) and want to tell people exactly what I think of their bad form.  I am trying to moderate my desire to tell whingers about first world problems to STFU and for some reason I feel like a bit of a moral crusader right now. I have no tolerance for bullying or people being mean to others. My lips are sore from biting down on them 

Ciao for now,

Jubby xox