Has anyone started a forum for Chemo in Dec 2008?

Hello ladies,

I've been trying to catch up on the posts.... I think I am one of the lucky ones as far as the SEs goes. My taste buds haven't changed too terribly, at least not where "tastes" are concerned. I'm still able to drink pretty much anything. (non-alchoholic) Tea and cranberry-grape juice have worked well for me, along with chocolate milk!

For me, it's been more of a "texture" thing. I went to a Christmas party this weekend and stuff I normally love tasted like "mush" or "gritty." (Mini quiches and crab cakes were awful...didn't even touch the stuffed mushrooms. My friends have used the same caterers for years, so I know it had to be me!)

As for other SEs, I had been feeling great since Wednesday, but Saturday afternoon started feeling "blah" and tired again. Now, I'm starting to get light headed at times. I got extremely dizzy almost everytime I stood up yesterday. Anyone else with that happening? 

Oh and I agree about my hair feeling like "straw." Normally my hair is baby fine and very soft, but lately it feels coarse and is not "acting right." (Sticks up where it didn't before, etc.... ) Today is day 11 so I guess by Thursday the hair should be going, going, gone...

I hope everyone had as enjoyable a Monday as possible.

Cat

Cat, glad to hear your SEs aren't too bad. Not that my taste if off I do have a texture issue. I've always had texture problem, I've never likes beans because of the texture. But now I'm finding out things like a plain grilled cheese, can't do it, melted american cheese isn't agreeing with my texture buds!

Went for my grocery juice run, the girl at the register must I thought I was nuts! LOL! Spent $70 in juice, ice cream & popsicles  Tried my first one, didn't work. It was the pomegranate lemonade, I think the lemonade part is what didn't work. I'm sure going to be making my kids happy through all this, we NEVER have juice in the house, we're all water drinkers, so they'll be drinking all the "bad" stuff. I have to make some chocolate syrup, hey, if that's all that works, I'll sacrifice

Sherry thanks for posting about your hair.  I had to leave work early today because of my hair.  Still don't have it in me to really go short. However, this is really miserable how it is coming out. Your most recent post sounds happy.  I hope you had a great dinner.

Caroline I wish something could help your taste buds. 

I was sad about my WBC today.  I am 2 weeks out from my TC and it was 1.7.  I'm afraid I will not get TC next Monday.  I am way frustrated with my onc.  Also, I got my period today.  Is it ok to wear tampons? This was a junky day!

Thanks

mimi

Appears that our hair is falling out on schedule - DH and daughter are out this evening so I may try to get rid of most of it. My wig is uncomfortable, really uncomfortable, awfully uncomfortable, I may have to turn into a hat person. My sense of taste seems to be slowly coming back, or I am beginning to like the new taste of everything!

Mimi, my WBC was virtually zero last Friday, had lab work done again today. Onc just called and it is back to normal. I was shocked how quickly it came back..... so you may be OK as well. When do you do your next lab work?

Mary 

This is from Newsday issue from Dec 12,2008 

======================================================== 

Drug to strengthen bones may fight breast cancer

THE ASSOCIATED PRESS

December 12, 2008

SAN ANTONIO - New research adds fresh hope that a drug that strengthens bones might also fight breast cancer.

Women who were given the drug, Zometa, as part of their initial treatment had greater tumor shrinkage and were less likely to need radical surgery, according to a preliminary study reported yesterday at a cancer conference in Texas.

In June, doctors were stunned when a big study found that Zometa - given to prevent bone loss caused by certain cancer treatments - also greatly cut the risk that cancer would recur in women who developed the disease before menopause.

Cancer specialists are eagerly awaiting the final results of a second, ongoing study testing Zometa in 3,360 women who had breast cancer after menopause - a much more common situation.

Its leaders gave a mini-report yesterday on 205 participants who had chemotherapy to try to shrink tumors before surgery.

Those given infusions of Zometa along with chemo had a third more tumor shrinkage and as a result were less likely to need their whole breast removed versus just the lump, said study leader Dr. Robert Coleman of the University of Sheffield in England.

Eleven percent of Zometa takers had a complete response to treatment - no evidence of cancer in their breasts or lymph nodes - versus 6 percent of women given chemo alone.

Partial studies like this are not enough to change practice, but these results deserve further testing, said Dr. Eric Winer of the Dana-Farber Cancer Center in Boston. Such significant benefits from the bone drug before surgery "is not something I would have expected," he said. Winer had no role in the work or financial ties to any breast cancer drugmakers.

The study was sponsored by Zometa's maker, Novartis AG, and the study leader consults for the company. A Zometa infusion can run more than $1,200. In the study it was given every three weeks for four to six months.

================================================================== 

Is anybody taking this or even discussed with your onc about it?

Updated list:

Texas357                1-Dec        FEC+Taxotere

mimiwhite                1-Dec         4xTC

gts                          1- Dec 

meb                        1-Dec         4xAC+4XTaxol 

Colleen1960             2-Dec        CMF

mmliv                      2-Dec        4xTC

msbusdriver             2-Dec        4xTC

LindaBusEd             2-Dec        TAC 

vtmama                   2- Dec       4xTaxol+C 

shan1171                2-Dec        6xTAC 

Brenny                    3-Dec        4xTC

zuffa                        3-Dec        6xTAC

Lindy58                    3-Dec      4xTC  

Catrenae                  4-Dec        4xAC+12xTaxol

Lainey64                  4-Dec        4xAC+4xTaxol

CindaD                     4-Dec        4xTC

BreastCancerDiva      4-Dec        4xFEC+4xTaxotere

lisasayers                 5-Dec        4xTC

simvog                      5-Dec        4xFAC+4xTaxol

cebula                      8 Dec        6xTC

sdavis                      9-Dec        6xTC

berrypathc               9-Dec        6xTC 

ptjen                       9- Dec           4xTC     

ShondaE           #2  9-Dec              AC 

Meg511                   10-Dec            6xTCH

Firni                         10-Dec           6xTC 

Lindy58                     10-Dec       1xTC+3xAC 

Colleen1960             #2 12-Dec        CMF  

ddlatt                       15-Dec            4xTC                              

horsercn                   16-Dec          4xAC+12 Taxol+Herceptin 

apfuentes                 16 Dec             4xTC 

busqueen                 16- Dec           4xAC+4xTaxol 

iktracey                    16-Dec                 4xTC 

Texas357                #2 16/17-Dec        FEC+Taxotere 

Kranie                      17- Dec                6xTC 

lLisainVA                 #2-17 Dec              4xTCH 

Lainey64                  #2 18-Dec          4xAC+4xTaxol 

momof4stars             18-Dec?           FEC+Taxotere

ENFENETEE            19-Dec             4xTC 

mimiwhite              #2- 22 Dec            4xTC

colleen1960            #3 22-Dec             CMF 

LindaBusEd           #2 23-Dec              TAC  

mmliv                     #2 23-Dec              4xTC 

msbusdriver           #2 23-Dec               4xTC 

Brenny                 #2 - 24-Dec               4xTC 

lisasayers             #2 26-Dec                 4xTC

simvog                  #2 -29 Dec          4xFAC+4xTaxol  

cebula                   #2 - 29 Dec               6xTC 

CindaD                  #2 - 29 Dec               4xTC

DrDecker                 29 Dec                   4xTC

Firni                       #2 -30-Dec              6xTC 

berrypathc              #2 30-Dec               6xTC  

sdavis                    #2-30-Dec        6xTC

ptjen                      #2-31-Dec               4xTC

Lindy58                  #2 -31-Dec               4xTC   

Bkokie                     4xTC 

msbusdriver: so sorry about the hair loss.  I will be singing the same tune in a few weeks, right about New Years.  Woo hoo, ringing in the new year in style.

I must revisit this issue: We should really start "Bald is the new Basic Black" campaign.

Who's with me??

I have had my cryfest today - ALL DAY!  I have produced enough tears and snot to scare a kindergarten teacher on the first day of school.

I even started packing a little bag to runaway from home and avoid the damn chemo tomorrow. Then I remembered that we are broke, as my disability insurance "lost" my claim packet my doctor faxed to them on Dec. 5th!!! Just found out that kicker today.  So I personally refaxed it all and called to verify receipt - it apparently takes 24 hours for it to get in the system and 5 business days to process and cut a check. We were expecting a check this week...

Good thing I have a part time embroidery business and can make some of the gifts to cut costs.

There are some things that shouldn't be allowed when dealing with cancer:

1. 1.  Stupid, well meaning people
2. 2. Getting your period
3. 3.  Insurance companies that suck
4. 4.  Weight gain - what's this whole "cancer thin" thing about? I am probably the most "healthy/fat" cancer patient I know. I have already gained 10 pounds and only started the steroids today.
5. 5. Have children and our loved ones be afraid we will die

Ladies, feel free to add on to the list

mimiwhite, about the tampons, I was wondering the same thing. I did use them, wasn't going to put myself through first few days of chemo & pads! LOL! But, got mine on day 4 when my blod count was still good. If yours are so low, you might want to call & check, or make sure you change more often. I have no idea if a low immune system puts you at higher risk for toxic shock syndrome or whatever it is that tampons cause.

apfuentes, sorry about that Got mine on day 4, doesn't change anything besides adding extra unneccesary discomforts & side effects! If you're like me, the worse is before & day of, so by tomorrow you should be feeling better. If you're lucky chemo will hit and mess with your system to prevent them from coming back until treatment is over One of the rare bonuses of chemo! Good luck tomorrow!

Hi Mary,

I hope your cold gets better real soon!  And I am happy to hear about your WBC up. 

My next lab is 12/22 before my 2nd TC.  I have a cold, but no fever.  Thank you for sharing about your hair.  I feel like I went 3 steps backwards in the past few days.  I was just sad that my WBC was 1.7, and had only went up 200 in a week.  I just don't know how it will go up that much next week.  I am eating protein, veggies, drinking non-caf.  I think it needs to be at least 2.1, but since communication in my onc department is awful, I don't know.  I feel like I am in the dark bumping into walls when I communicate with them. 

I am so "emo."  I am sure it is my period.  I was hoping not to have it, because of the ER+.

Dr. Decker thanks for your support.

Carol, how sweet is your husband?  My gosh what a sensitive man.

I wish everyone high WBC.  You know, I am focused on WBC, than the half of hair left on my scalp.  I just feel like this will never end.  Bye, Mimi

I had to go home from work early yesterday because I was so fatiqued.  I'm feeling better this morning and back at work but it's still early.  It usually hits me around the the afternoon.  My appetite seems ok today but I woke up with some soreness in my throat.  I'm have a bit of the sniffles too but it seems like all of us are getting that.  Hot tea and coffee are going down fine at the moment so I'm having a cup of black tea.  I'm hoping the caffeine will give me a little boost.

Speaking of periods, I mentioned before that mine was heavier than usual this time.  I used tampons. I wondered if it was safe or not but I wasn't going the pad route.  I'm going to ask my Onc about it on Thursday.  Another question to add to my list! 

I hope everyone is doing good today.  

Hugs, Elaine 

LisaS, thanks for the uplifting story, I needed that this AM.

Mimi, It's probably a good idea to stay away from tampons with a low WBC, I think I read somewhere about the possibility of tearing the lining of your vagina and getting an infection (sorry if that is to personal, I'm a nurse and will talk about any body part to any person!) I did use tampons with my period, which was the day after chemo! Yuck!  Also, just keep washing those hands, that's the best defense against germs, and don't share any utensils or drinks.

MSBusDriver, I was glad to hear your hair posts, I'm a little less scared about my impending baldness this week.....just a little.

IKTracey, LOL on your posts, you sounded like me just a few days ago, A friend had to give me an attitude adjustment, which I seem to need on a regular basis now!  I'd like to add

6. Having to listen to other people's horror stories of how they knew someone who died an excrutiating, painful death from cancer. Then they start to cry and you have to comfort THEM. What's up with that?

By the way, my insurance company won't pay for a wig, they said it's medically UNNECCESARY. Ha! I gave that poor rep an ear full!

To the ladies who are starting today, good luck, you'll be fine.  All of you Diva's Rock!

Cinda

I just got back from the doctor (PCP) and she said that I don't have an ear infection, a little red though so to call her if it gets worse. So I'm trying sudafed as the onc nurse suggestion with a nasal spray. I hope this does the trick. Now, while I was at the doc. I asked her if anyone is sick, who should wear the mask? me or the sick person? Hubby & I were disagreeing over this. Doc says the sick person (this sounds bad! LOL). In my case, my children are the sick one I did have a hard time putting the mask on my 5 year old, but he's ok with it now. Since it's so much cheaper to buy them online, she handed me 5 goody bags, each containing 1 mask, a small tissue box & a small bottle of hand sanitizer  I'll be ordering pink masks for myself, and green for hubby & the kids, a little more fun than the regular blue.

I'll definately share my nutrition findings after my appointment.

Cinda, what a bummer about the wig! Have you tried a wig bank? You can usually get a free one there.

Has anyone found a good sleeping pill that works ALL night? I haven't had a full good night of sleep since I started chemo. I'm on day 9. Really.. since I had my port installed, which was a few days prior to that. I manage about 8 hours of interrupted sleep every night. I'm scared to take a nap for fear of not sleeping that night. I don't like to take Benadryl, while it knocks me out, I only sleep for 6 hours, then wake-up & toss and the next day I feel dizzy druged up.  Maybe I should just give up on sleep until rads are over then spend the weekend in a hotel sleeping all by myself! LOL!

Caroline, I was taking Tylenol PM and then I ran out so I've been taking Benedryl.  I really hate having to take all this extra stuff.  What is everyone else taking?  A friend gave me a couple of Xanax and I took one of those  a week or so ago and I slept really good!

I don't know if my inability to sleep is mental or physical.  I have no problem snoozing on the sofa but as soon as I get in bed I lay there wide awake. 

Cinda, that stinks about your wig!!  I submitted my claim and am waiting to hear if they'll approve it.  Unbelievable!!