How about a roll call?

Minnlady13 · Posted: Wed Feb 23, 2005 5:27 pm Post subject: Re: How about a roll call?

Bumping this back up to the top of the board. If you are new to this site, please add your name to our roll call post. Thanks, Lauri
_________________
Diagnosed 4/11/1996
Lumpectomy, 6 mm tumor
Neg. nodes
ER/PR+
33 rads
Tamoxifen, 5 yrs.
NED

FiddleDeDe · Posted: Mon Feb 28, 2005 11:24 am Post subject: Newbie

I am very new to all this. Does anyone have suggestions for really down to earth books/guides on breast cancer? I already have The Breast Book. Thanks!
_________________
Age 37
dx 1/31/05
IDC 8cm
nodes+, #?
Grade 3
ER/PR-/Her-2-
miscarriage 13 wks
chemo 2/22/05 TAC, every 3 wks
masectomy planned after chemo

AlaskaAngel · Posted: Mon Feb 28, 2005 1:26 pm Post subject: Books for bc

Dr. John Link, either Take Charge of Your Breast Cancer, or The Breast Cancer Survival Manual

Online forums are the best place of all for finding out what people go through and find out....

This forum is wonderful for asking the doctors questions. They can't always answer overnight because their lives are busy ones but they do care and get back as often as they can.

A.A.
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

AlaskaAngel · Posted: Mon Feb 28, 2005 1:36 pm Post subject: Books

John Link's books are good for people just starting out and trying to get organized in all of the confusion. But you are farther out than that.
By your bio you are probably interested in books that deal more with cancer in depth, current theories, personal experiences, diet, or alternative/complementary therapies... ?
A.A.

FiddleDeDe · Posted: Mon Feb 28, 2005 2:04 pm Post subject: Re: How about a roll call?

Thanks, A.A. Guess it's only been a few weeks, but I am starting to pick up on some of the lingo. What I'd like is a very practical guide to coping. I wish I'd known what an awful experience I was going to have with having the central line put into my arm. In hindsight, I wonder if the chest would have been better. Also I'm finding out on my own that my eyebrows are shedding and haven't noticed much loss on my head yet. This sort of stuff.
_________________
Age 37
dx 1/31/05
IDC 8cm
nodes+, #?
Grade 3
ER/PR-/Her-2-
miscarriage 13 wks
chemo 2/22/05 TAC, every 3 wks
masectomy planned after chemo

AlaskaAngel · Posted: Mon Feb 28, 2005 2:24 pm Post subject: Coping

I've seen posts from women with both kinds and it seems to be evenly divided with experiences good or bad. I still have mine as I use it for draws for a clinical trial (mine was chest) and I do like mine just fine, surprisingly.

I lost most of my eyebrows too and most of them came back. I touch them up here and there but that's easy.

Personally I did find online groups to be the best place for help with coping, but if you are up to it sometimes local in-person groups are good too. BCANS is one site I like online for coping. Lots of good people there.

When I was in Seattle once to see my surgeon I asked one online group for book suggestions for me to haul home because our local bookstore is... meager at best.. and I like to browse books rather than just order them. The response was wonderful. Here's some of them:

Coping:

Just Get Me Through This, by Deborah Cohen

For when you are discouraged:

The Anatomy of Hope, by Dr. Jerome Groopman

There is No Place Like Hope, by Vickie Girard

For Humor:

Bald in the Land of Big Hair

I have others if these don't do the trick...

A.A.

FiddleDeDe · Posted: Mon Feb 28, 2005 3:31 pm Post subject: Re: How about a roll call?

A.A., thanks for the wealth of info, this is great. I will try to learn more here and other forums. I am fortunate that I am fairly close to The Wellness Center in Santa Monica. Hope to go to an orientation tomorrow evening.
_________________
Age 37
dx 1/31/05
IDC 8cm
nodes+, #?
Grade 3
ER/PR-/Her-2-
miscarriage 13 wks
chemo 2/22/05 TAC, every 3 wks
masectomy planned after chemo

sgishelly · Posted: Mon Feb 28, 2005 4:27 pm Post subject: Re: How about a roll call?

FiddleDeDe,

I did notice my eyebrows coming out before my hair....mainly when I was plucking them...they came out really easy and didn't seem to grow back. Then my hair fell out shortly after that. As of now...I still have a few eyebrows and eyelashes but almost no hair. I've not had too much problem dealing with that....I just put on a hat and go...

As for a port....mine's in my chest and is working out very well.
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

FiddleDeDe · Posted: Mon Feb 28, 2005 4:45 pm Post subject: Re: How about a roll call?

Thanks for the info sgishelly. Did you loose hair on your arms, legs and other regions? Just wondering.
_________________
Age 37
dx 1/31/05
IDC 8cm
nodes+, #?
Grade 3
ER/PR-/Her-2-
miscarriage 13 wks
chemo 2/22/05 TAC, every 3 wks
masectomy planned after chemo

sgishelly · Posted: Mon Feb 28, 2005 4:53 pm Post subject: Re: How about a roll call?

The hair on my legs just seemed to stop growing. It's kind of nice not having to shave my legs but once every couple of weeks!! The hair on my arms is still hanging in there...which seems kind of odd to me. My eyebrows and eyelashes have thinned out quite a bit but are not totally gone yet. And yes...on the other regions...
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

marybeth · Posted: Mon Feb 28, 2005 8:41 pm Post subject: Re: How about a roll call?

Hi - Next up! I'm MB and live in Syracuse NY (expecting the Nor'easter - a foot of snow tonigth to add to the 107" we already have OH YEA)....
Was dx 12/28/04 just after my 51st birthday. My tremendously supportive husband and I have one son, 12 years old.. Expected Stage 1 due to tiny 6mm tumor and lumpectomy performed 1/5. After 3 tries for a clear margin with no luck, Dr removed 5 lymph nodes rather than just the sentinal and originally showed all clean. Subsequent path report showed microscropic cancer cells in one lymph node so left simple mastectomy on 1/14 and full round of chemo expected and now considered Stage II with that lymph node involvement. 4 A/C, 4 Taxol, tamoxofin 5 yrs expected. I am hoping to tolerate chemo well, freaking out about losing my hair, but have wig in the wings waiting for it's call, and am thinking of shaving it once I start to 'shed'. I am keeping my positive outlook and have a sense of humor that helps..... I am learning a lot my first time on this forum and thank you all for the anticipated support! MB
_________________
Dx 12/28/04 at age 51
DCIS and ductal carcinoma invasive
6mm tumor
lumpectomy 1/5/05 unsuccessful margins
left mastectomy 1/14/05
1 +/5 lymph nodes
Chemo started 3/15 AC, then Taxol
Herceptin 6 rounds/stopped b/c of low EF
Armimidex
right prophylactic mastectomy 2/17/06
Implants 1/07, final w/tatto 9/07

FiddleDeDe · Posted: Tue Mar 01, 2005 1:31 am Post subject: Re: How about a roll call?

Welcome Marybeth. Just one word of caution. I had my port put in a week ago and just had a 102.2 fever break a little while ago. If you get aftercare instructions make sure every person who touches your port reads them. I thought I would be insulting my oncologist's nurses by during more than mildly insisting they keep this thing sterile. So keep it super clean so you have a pleasant experience with your port.
_________________
Age 37
dx 1/31/05
IDC 8cm
nodes+, #?
Grade 3
ER/PR-/Her-2-
miscarriage 13 wks
chemo 2/22/05 TAC, every 3 wks
masectomy planned after chemo

marybeth · Posted: Tue Mar 01, 2005 8:04 am Post subject: Re: How about a roll call?

Thank you for the advise! I do hear that ports can get easily infected but that they are a great alternative to the constant IV.... I see from your signature that you started chemo 2/22 -- how did it go and are you feeling well considering at all? MB
_________________
Dx 12/28/04 at age 51
DCIS and ductal carcinoma invasive
6mm tumor
lumpectomy 1/5/05 unsuccessful margins
left mastectomy 1/14/05
1 +/5 lymph nodes
Chemo started 3/15 AC, then Taxol
Herceptin 6 rounds/stopped b/c of low EF
Armimidex
right prophylactic mastectomy 2/17/06
Implants 1/07, final w/tatto 9/07

sgishelly · Posted: Tue Mar 01, 2005 11:08 am Post subject: Re: How about a roll call?

I had my port put in on Jan 13. I've had no problems at all with it. I did have nausea the day after my port surgery...I think the surgery had something to do with that....but other than that, no problems. When I go in for chemo, having the port makes everthing easier. Only one stick and it's not bad at all. They can draw blood through my port as well as give the chemo through it....and they don't have to hunt for veins!! Plus the chemo nurse told me that the chemo goes in faster with the port.
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

FiddleDeDe · Posted: Tue Mar 01, 2005 11:28 am Post subject: Re: How about a roll call?

Marybeth, I did have my first round on the 22nd. Had a triple cocktail of Docetaxel (Taxotere), Adriamcycin and Cytoxan. It took over 4 hours because it was my first time and they go slow to make sure there are no reactions.

First I had just fluids, then anti-nausea medications. I think the last thing was the Taxotere and that gave me a mild headache. I invited a group of friends to hang out and have a chemo party. It made the time go easier.

The next day, my oncologist had me come back for interveneous fluids. The day after that my anti-nausea drugs wore off and I had a little nausea and took some Compazine.

It went better than I thought. I'm having some problems now but I'm pretty sure it's due to complications with my port and not from the chemo.

Good luck on your first time.
_________________
Age 37
dx 1/31/05
IDC 8cm
nodes+, #?
Grade 3
ER/PR-/Her-2-
miscarriage 13 wks
chemo 2/22/05 TAC, every 3 wks
masectomy planned after chemo

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