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Old 01-23-2007, 03:00 AM   #1
Brenda_D
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Starting chemo tomorrow

Hello everyone. I'm starting my first chemo tomorrow and am looking for advice. Do's and don't do's.
My Onc is starting me on Herceptin and Tamoxifen.
I have a port put in and got a couple lidocaine patches from my doctor, since the port area is still sore.

I was dx 12/12/06 with IDC with mets to bone. I had a lumpectomy with axial disection. I got clear margins and no axial node involvement. (yay!)
I do have inner mammary node involvement and several areas of bone mets, according to the Pet/CT scan and 3 doctors.
I am awake now because of bone pain. ugh.. and will talk to the onco about that too.

Any tips will be appreciated.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 01-23-2007, 06:45 AM   #2
Sheila
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Brenda

The first dose of Herceptin will be a loading dose and will take about 2 hours. You may feel achy and tired after the first dose, kind of like the flu for a day or so. After that, the side effects should be minimal. Everyone is different, I have been on Herceptin for 3 1/2 years, every 3 weeks. I drive myself 85 miles to the hospital, get my treatment, and sometimes go shopping on the way home. Occasionally I feel tired the first day, but not every time. The tamoxifen is an oral drug, and side effects should also be minimal. Any other chemo on the horizon? Good Luck. You will do fine
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"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 01-23-2007, 06:59 AM   #3
Brenda_D
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Thanks Sheila.
I'm hoping for a good first treatment. The problem is that I'm having a lot of pain in my back and legs at the moment, and I have no idea what it's related to. Maybe it will be gone tomorrow.

As far as future chemo, I don't know. He just said 4 treatments 3 weeks apart, then I guess testing to see how it's working. He said radiation in the future but didn't say how far out in the future.
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Old 01-23-2007, 07:17 AM   #4
Mary Anne in TX
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Good luck on your first treatment, Brenda. Those aches and pains make our mind worry us sometimes. "Treat" yourself to something fun like Sheila's shopping after treatment. I do, and it makes it so much easier. Sometimes, when weather is bad, it's just a walk in the mall or wherever it's dry. Sometimes it's a cup of hot tea to unwind and get back in charge of my mind and body.

Take care and God bless you.
ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 01-23-2007, 07:55 AM   #5
tousled1
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My only advise is to drink plenty of water both during and after your chemo. I've never taken Tamoxifen so I can't give you any advise there. For your port you should ask your oncologist for a prescription for Lidocaine cream. I use it before each Herceptin treatment. All you do is put a glob of it on the port and then cover the area with a small piece of plastic wrap. Using it I feel no pain when they stick the port. Good luck to you.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 01-23-2007, 08:43 AM   #6
SusanV
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Brenda,

Just wanted to wish you good luck with your chemo, and to also add because you will be seated in a chair for a few hours, and you are already dealing with back pain...speak up and ask for pillows to really make yourself comfortable for the infusion....putting your feet up may also alleviate pressure on your back.

Good luck !
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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Old 01-23-2007, 09:06 AM   #7
Linda_M
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Hi Brenda,

I hope your first treatment goes well for you. Everyone reacts differently to chemo and I hope you're one of the "lucky" ones.
Do you have anyone that will be going with you? Sometimes it can be a little daunting being alone for your first treatment. Also you might be in more pain in your bones from sitting so long, perhaps a friend can drive you so you can stretch out in the car on your return. Besides having a friend along makes the time go by quickly. You can always take a favorite book (sometimes the hospital magazines are pretty outdated!), and if you have an MP3 player or iPod, you can listen to your favorite music.

Again, good luck and (((((hugs)))))
__________________
dx 2000 IBC and 2 DCIS
Lumpdectomy
4 bouts AC Chemo
25 bouts Rad 5 Boost Rad
Lymph Node Neg
HR2+++
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Old 01-23-2007, 09:36 AM   #8
Brenda_D
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Thanks everyone. I did get a couple lidocaine patches for use before chemo. My doc said to put one on the night before and take it off about an hour before treatment.

The hospital called to see how I'm doing with the port. So far it's ok, except for being sore.
I did have a sore spot under my jaw the next day, and told them about that. I'll also tell the oncologist, in case it was a lymph node swelling. It's still a little sore today.
I plan to take some GatorAide with me to treatment, and my hubby is taking me this first time. He wants to be with me to see what's going on and how it's going to affect me.
He's a sweetie.
I am lucky that the onco comes to our little town once a week to an outpatient clinic here, and I'll get my treatments right here in town. It's only about a 5 minute drive to the clinic. I'll also be able to get my rads here in town too.
That means a lot to me, since travel would be a issue at this point in time.
Thanks agin for your input and well wishes. It makes me feel like going the first time won't be so bad now.

I will definately bring up my back and leg pain too.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 01-23-2007, 09:45 AM   #9
KRISS
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I'm sure you do fine. I just had my second yesterday and my feelings during the day were much lighter than the first time. Just wanted you to know it's OK to be scared and sad. I know I cried as they were hooking me up the first time. The nurse was so supportive and told me these were not the first tears that room had seen. So don't feel ashamed if that's what you want to do. Good luck to you. I'm sure will come through with flying colors. Kriss
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DX IDC AT 42 12/7/06
2.2CM STAGE I GRADE 2
NODE NEG
PARTIAL 12/18/06
HER2+ /ER+(75%) PR+(5%)
4 DD AC CHEMO STARTING 1/10/07
4 DD Taxol Starting 3/5/07
1year weekly Herceptin starting 3/5/07
finished 2/18/08
changed to every 3 weeks 4/23/07
completed 33 radiation treatments 7/6/07
TAH and BSO 9/24/07
start Femarra 10/8/07
Started Neritinib trial 12/14/09
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Old 01-23-2007, 11:48 AM   #10
StephN
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Wink Welcome

Treatment for breast cancer can be pretty hard, but you say you are getting Herceptin and Tamoxifin. If this is correct, the Tamox is a hormone suppressor that you take in pill form. The Herceptin is a targeted therapy that is not a "hard" chemo and should not make you sick. You will probably have chills due to a little fever the first night, but after that it does not happen. These drugs do not cause nausea or blood counts to drop, except in rare cases.

A couple of questions. Is your Herceptin a one week or 3 week dose?
Where are your bone mets? This can be some cause of the pain.

If you have bone mets, a normal treatment for them is ZOMETA or other bone strengthener. Maybe you should ask what is being done for those bone mets. Also, very often bone mets are radiated with very closely targeted beams and this had good effect.

You are new, but the above questions could be very important in the overall picture. Hang in here and we will help you along the way.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-23-2007, 12:33 PM   #11
Brenda_D
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Hi StephN. My onc said 4 treatments 3 weeks apart to start out. Rads will come later on.
From what I've read Herceptin and Tamoxifen are a couple of treatments that have some of the lesser side effects, and for that I'm greatful.
The doc asked about my heart health (no known problems) and told me I wouldn't have to worry about nausea, they will give anti-nausea meds ahead of treatment. He did say I'd lose my hair about 2 to 3 weeks into treatment.
He may have other drugs planned for the future, but he hasn't told me anything else yet.
According to my Pet/CT scan, the mets are in the inner mammary node chain, my shoulder, lumbar spine, and hip area.
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Old 01-23-2007, 01:43 PM   #12
doh2pa
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Hi Brenda,

First of all I want to mirror everyone else here and say you will do fine. It's scary at first, but you will get through it. We are all pulling for you.

I wanted to question whether you had heard your onc correctly. Tamoxifen or Herceptin should not make you nauseous or loose your hair. Are you sure you are not getting Taxol or Taxotere?? They will cause hair loss and nausea is possible but a lot of women (I was one) just had mild stomach upset, not real nausea.

Good luck!
Donna
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 01-23-2007, 02:17 PM   #13
Jean
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Brenda,

Thinking of you and wishing you well. The first treatment is not easy
as Kriss said, the unknown is the worst part. Hopefully you will do well
and as you already know everyone is here to help you with any questions.

Sending you all good wishes,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-23-2007, 02:31 PM   #14
Brenda_D
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I wondered that myself, Donna. I tend to think he was speaking in terms of future treatment, but I will find out for sure tomorrow.
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12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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Old 01-23-2007, 04:40 PM   #15
Sheila
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Brenda

When you said 4 treatments 3 weeks apart, that sounds to me like chemo first then the Herceptin and tamoxifen....you need to ask what type of treatment so you will know more what to expect...usually chemo is first then the Herceptin.
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 01-23-2007, 05:09 PM   #16
Brenda_D
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I will know more tomorrow, and I'll post after I get back home, if I feel up to it.
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Old 01-23-2007, 07:30 PM   #17
bashmaz
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probably Taxol

Hi - I add my best wishes for your first treatment. I noticed that you are ER- and PR-, so this would mean you wouldn't be getting Tamoxifen as it is a hormone suppressor for ER/PR+ve cancer.
As it's been shown that Herceptin works better when used in conjunction with Taxol (or Taxotere), I have to think you'll be getting one of these (and they do cause hair loss, or at least lots of thining!)

Best Wishes
Marianne (I'm almost 5 years out from my initial surgery and treatment:ER/PR- and Her2+++!)
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Old 01-23-2007, 08:00 PM   #18
Mary Jo
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Brenda - Sending lots of love, hugs and support your way. I remember being scared of my first chemo too BUT it all went well and I'm sure it will for you also.

God give you His peace Brenda,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 01-23-2007, 10:04 PM   #19
Bev
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My best guess too is you'll be doing taxol and herceptin. Taxol is harder than tamox, but easier than AC. It's the premeds that made me feel loopy. Once you find out for sure what meds you are doing, find out about the drugs by clicking search and entering drug name on the little purple bar above.

You'll be OK! Best wishes, BB
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Old 01-23-2007, 11:24 PM   #20
Catherine
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Hi Brenda,

You'll feel much better after tomorrow is behind you. If you really do get a chemo drug tomorrow, ask which one it is. Have them write it down for you. If it is chemo, ask your oncologist or the nurses if they have a handout you can take home. It tells you what to watch out for. Call your doctor if you have any of the symptoms you are to watch for. One is a high fever. I had 8 rounds of chemo and never got a high fever.....and most people DO NOT. My point is that as a precaution you know what to look for when you get home and you know who and where to call. I only had to call once in 16 weeks. I was so sore from Taxol that they gave me a steroid over the phone on a Friday night. I am so glad your husband is going with you. Support and another pair of ears is very important. Drink lots of water. Have a variety of snacks on hand in case you get sick from chemo. I liked chocolate boost, jello and popsicles.

All the best, we are all on your side, Catherine
__________________
Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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