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Old 01-13-2010, 10:54 AM   #1
RosaGneco
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Unhappy How can I keep my mother positive?

My mother was diagnosed with breast cancer caused by the HER2 gene just a few months ago (Nov 09). The doctors removed the lump in a partial mastectomy and immediately started her on Herceptin and chemo. It's only been two weeks since her first chemo and she is doing horrible- to say the least. She can barely see, can't stand and canít keep anything down- not even water. She telling everyone that she will never go back to the doctors because they are going to kill her before the cancer does with all the meds. She's loosing her hair already and is extremely depressed. It is extremely hard on the rest of us too.

Does anyone have any advice on how to keep her going on with treatments and how to keep her positive? It's hard for her to listen to us when we beg her to continue treatments or when we tell her to keep her head up because we have never been through anything like what she is going through. She feels we dont understand. Maybe if someone who has been through this can give some words of encouragement/ advice she would be more willing to listen.

Sincerely,
Loving and Scared Daughter
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Old 01-13-2010, 12:59 PM   #2
chrisy
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Re: How can I keep my mother positive?

Rosa,
First of all, there is much to be hopeful for. Do not lose heart, and do not let your mom, either. True, you "don't understand" - nobody who hasn't been through this can, really. But that doesn't mean you have nothing useful to offer.

You have come to a good place for support - there are many many people here who are actively in the fight, many who have already completed therapy, and others who, like you, are trying to offer support to loved ones.

I wonder if you can clarify a couple of things.

First, I'm troubled by the side effects you describe. It seems pretty extreme. Are these related to your mom's treatment? My assumption is yes, as your mom was treated with lumpectomy and you have not said anything about evidence of other issues.

Everyone responds to treatment differently in terms of side effects. What chemo is your mom taking? Some are tougher than others. But they do work well on Her2+ cancer, and with the Herceptin this type of cancer (which used to be a poor prognosis) is now very treatable and has a favorable prognosis!

Regardless of what combo she is on she should discuss these immediately with her doctor or oncology nurse - there are lots of meds that can prevent or manage a lot of the side effects of treament. When I had chemo, I had several "premeds" to prevent nausea, infusion reactions, etc.

I also had additional meds to take home, with instructions to take at the first sign of problems as it is easier to get under control before it's out of control so to speak.

It is not fun, but most chemos these days are definitely "doable". Help is available and although I can understand her feelings, the doctor is trying to kill any stray cancer, NOT kill the patient! Expect/demand that the doctor works with your mom to mitigate the side effects.

The whole idea of dealing with cancer, and having chemo, is quite depressing in itself. If you also feel totally crappy from the treatment, it can make you feel like what's the point. BUT, people do get through it, and your mom can too. She needs some support in managing the side effects for sure.

I know you will get many encouraging responses from people who are doing it, and have done it.

Cancer suck, but life is still good - and worth fighting for.

Do not lose heart,
chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-13-2010, 09:42 PM   #3
ElaineM
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Wink Re: How can I keep my mother positive?

You have come to a good place on the internet for her2 positive patients.
There are many, many people here who are doing, have done and will have chemotherapy for her2 breast cancer.
You or your mother should talk to her doctor and/or nurses about her concerns and side effects. Help can be offered for almost every possible side effect. It may be hard for doctors to determine which side effects a person may experience before the person actually starts the treatment, but most of them are more than willing to help with side effects after they know which side effects a person is experiencing. Some cancer centers can direct patients to other kinds of help too.
Good luck. Tell your mother to hang in there. She has many friends here.
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Old 01-13-2010, 10:52 PM   #4
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Re: How can I keep my mother positive?

None of the side effects that you described can be attributed to Herceptin.

Is your Mom taking other drugs along with the Herceptin?

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Old 01-14-2010, 06:54 AM   #5
Becky
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Re: How can I keep my mother positive?

I would also like to add that not only are there pre-infusion anti nausea drugs and post infusion anti nausea pills, some of her "side effects" can just be from extreme stress. Stress of diagnosis, surgery and then treatment (and perhaps radiation in the future). The emotional toll can be quite devastating for many patients and they can also cause or exaserbate these symptoms.

You mother should also discuss this with her medical team as anti-anxiety drugs or other medications may be useful.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-14-2010, 07:57 AM   #6
RosaGneco
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Re: How can I keep my mother positive?

First of all, I want to thank everyone so much. Your encouraging words are priceless. I really hope that when I pass on all your messages, she hears the positivity I hear.

To answer some of your questions-

"First, I'm troubled by the side effects you describe. It seems pretty extreme. Are these related to your mom's treatment? My assumption is yes, as your mom was treated with lumpectomy and you have not said anything about evidence of other issues. Are these related to your mom's treatment?"
--Yes, the side effects are related to the lumpectomy treatment. The doctors say her side effects are indeed extreme but have yet to be able to stabilize her and make the side effects more "doable".

"What chemo is your mom taking? "
-- Something called Carboplatin, Taxotere or Docetaxel.

"Is your Mom taking other drugs along with the Herceptin?"
-- Yes, I wish I could tell name them all. She is on a slew of different medications. Many are to counteract all her negative side effects. One is an anti-anxiety. There are literally 15 + bottles of meds.
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Old 01-16-2010, 05:01 PM   #7
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Re: How can I keep my mother positive?

Someone - most likely her oncologist - need to look at all the meds and evaluate them. Unless she's diabetic or with other chronic illnesses, there is no reason for her to be having that many 'bottles' of meds for breast cancer treatment.

Sounded to me that she might benefit from getting some counseling from a professional. Someone who is well trained in dealing with cancer patients and related issues. A counselor knows how to 'listen' and allow the patient to get their anxiety 'out'.

But usually a close friend or close relative who has good relationship with her will have similar or even better result than going to a doctor's office. Is there a local cancer support group available? What about her family doctor? Oncologists sometimes can be hard to communicate with.

My Mother became very irrational when she was faced with the treatment of Non-Hodgkins Lymphoma 11 years ago. It took a lot of persuation (including my flying a couple of thousands miles to see her at home) to get her to have the surgery. She went through chemo and radiation and is now a healthy 86-year-old.

Be sure to let your Mom know that Her2 breast cancer is now the most treatable one because of Herceptin. Discard any statistic you might find that is dated before 2007 when Herceptin became widely available. All the women on this Board are testamonies to the effectiveness of the treatment. Ask your Mom to join us (or at least glance through the messages on the Board.) Many of us have survived; she can, too.

ps. Cook some plain rice soup with just water and rice and perhaps some sweet patato cubes. Starch can be partially absorbed by our saliver, thus easier on our stomach. The soup part will also provide much needed fluid. All other food (bread, meat, fruit...etc) can be made into a 'shake' and drink down slowly. Good nutrition provides energy we need to fight the cancer. Be sure to let her know we are all her sisters in this battle.
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NICU 4.4 LB
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Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
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Irrtbl bowel 1'09
Colonoscopy 313
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hptc hemangioma
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GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Last edited by Jackie07; 01-19-2010 at 07:04 PM..
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Old 01-20-2010, 04:16 PM   #8
jgneco
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Re: How can I keep my mother positive?

I am Rosa's mother and I am sorry to worry her so much. I have always been a caretaker and now I am depending on husband to care for me.
I was diagnosed with Breast Cancer in Nov 09. I have her2 (neg estro. & pro.)level 3. I was a healthy 54 year old woman who used to work out daily and ate right.
I have no one in my family with cancer, so it too me a long time to accept the fact that I had cancer. I had one chemo which almost killed me. I was bedridden for 10 days and could not keep anything down. I lost 10 pounds in 6 days and had a fever and a constant headache.
I will go tomorrow for the second chemo round and I am terrified. When I communicated the problems to my doctor and other cancer patients that I met, I found out that the anti-nausau (ONDANSETRON) was giving me a migrate headaches and pain medication, OXYCODOND medication got me very sick.
I was throwing up and had diarrhea for 4 days.
I went to the hospital and got hydrated and felt better for one day.
Then I had a fever because I had a some type of infection. The doctor gave me antibiotic (CIPROFLOXACIN-HCL) which gave me a immediately reaction. I started shaking and could not stop my body from shaking. I also started thinking of suicide. The doctor was called and allegery medication was given to me. I was also given anxiety medication to calm me down.
Yesterday, I got a power port put in because I ran out of veins. That should make my Chemo easier.
I was a strong single mother who raised three children, who are successful and good human being. I struggled all my life but this is a struggle that I have no control of.
I thank you all that responded to my daughter's concern. I will try Chemo again because my love ones have convince me. I just hope that I don't die from treatments...

Last edited by jgneco; 01-20-2010 at 04:21 PM.. Reason: mistake
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Old 01-20-2010, 04:43 PM   #9
Jackie07
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Re: How can I keep my mother positive?

Hi Rosa's Mother,

It's so good to hear from you. I'm glad you are going to resume the treatment. Hopefully your doctor has got everything figured out and will give you the right meds this time.

A port really helps. I'd had several surgeries before my breast cancer, so the surgeon installed the port during my lumpectomy in 2003. After the 2nd (or 3rd?) chemo using the port, I was having too much pain when the needle went into my port (even after taking a deep breath and then holding my breath - so one of the technician brought me a cream to put on the port to numb it and the next several rounds of chemo I put the cream on before I was headed to the hospital because it takes 25-30 minutes to take effect.

I'm mentioning this just to emphasize again that there's solution for everything and a chemo patient in modern time is not supposed to 'suffer' from needless pain. There are good anti-nausea medicine also. Be sure to ask for it when you need it.

Isn't it wonderful to have a wonderful daughter like Rosa? Be sure to tell her how much we admire her devotion and love to you... and please keep us updated.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 01-20-2010 at 04:52 PM..
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Old 01-21-2010, 04:25 AM   #10
jgneco
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Re: How can I keep my mother positive?

Jackie, you sound like an amazing woman. Thank you for you positive feedback.
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Old 01-21-2010, 06:46 PM   #11
RosaGneco
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Re: How can I keep my mother positive?

I am so grateful that my mom will continue Chemo/ Herceptin!!!!! Reading all your posts bring tears to my eyes. This whole ordeal has been very stressful and reading all your responses as well as the other posts give me lots of hope. Mom I love u so much and we need you here! There is so much to live for! All your strength so far has made all of us so proud. I hope that hearing everyone's stories bring you some more strength. To anyone out there who has gone through this- I'm sure my mom would love to talk to you over the phone one-on-one. I think talking to others who have gone through this will help her tremendously.
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Old 01-21-2010, 10:05 PM   #12
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Re: How can I keep my mother positive?

Hi Rosa and Rosa's mother,

I wanted to share my story with you with hope it will bring you some peace of mind. You can read my information below but it seems we have some things in common.

I also had no breast cancer in my family and was in shock when I found out I not only had breast cancer, but it was HER2. I also have a wonderful daughter who has been with me as I take this journey and fight this battle.

I am currently on chemo (Taxotere, Carboplatin and Herceptin). I was diagnosed in May of 09 and will have my 6th and final chemo next Thursday. In the beginning I experienced some of the same side effects you have mentioned.

Although I've never thrown up I have struggled with nausea each time and each time my onc added an additional drug to help with that along with medications for the extreme abdominal pain I experienced.

Currently, I take Emend-you take one of these an hour before your chemo, and then one a day for the next 2 days. I also have patches I wear behind my ear, Ondansetron (which you mentioned) and also have a script for Dronabinol. The last drug I listed was given to me after my 4th treatment because I will still having some problems with nausea. When I have chemo I take all of these as prescribed.

It is so important to take them even if you don't feel like you need them. I had a physical therapy appt this week and had stopped taking my nausea meds because I thought I was "out of the woods" by this time. Boy was I wrong. I came so close to getting sick on my way to PT that my husband had to go in and tell them I was not able to come in. I went straight home, put the patch behind my ear and started back on my nausea meds.

After my 1st treatment I started running a fever and had to have the antibiotics by IV and had a mild reaction to the drug. I insisted they continue so they gave me a lot of Benadryl and slowed how fast the drug went in and I was able to finish the IV. They determined that the sutures from my mastectomy did not dissolve properly, and after they removed those I didn't have a problem with the fever any longer.

This has not been an easy journey but I'm still here and kicking. The chemo did not kill me. We all respond to it differently but I wanted you to know that I completely understand what you are going through. I was so afraid in the beginning but the fear has subsided over time.

I started taking an anti-depressant early in my treatment and have found it to be very helpful. There is no shame in asking for this. Dealing with bc causes so much anxiety and there is no need to suffer with that too when there are drugs that can help. Of course that is a personal choice, but wanted you to know that I opted to do that.

I have a port and like Jackie, I have a cream that I rub on the area before I go for chemo and barely feel the needle stick. I put the cream on really thick and use Glad cling wrap (cut off the amount you need) to put over the area so it does not rub off or get on my clothes. That stuff sticks to your skin really well just like it does when you put it over a bowl.

Everyone has given you wonderful advice and I hope sharing my experiences with you and the fact that I'm almost done will give you the inspiration you need. You CAN do this.

Make sure you contact your onc with any new side effects--don't wait until you go back to the doctor. Even though I don't need all of the medication I have each time I have something on hand that I can take if I need it.

I don't have any hair either but you know what? It's kind of a relief for me to not have to deal with hair right now! I have wigs, hats and scarves if I choose to wear them. My hair is already growing back and looks kind of like peach fuzz at the moment. Don't get me wrong, I want my hair back and it will come back. I don't miss shaving my legs either!

Keep the faith and don't give up. This is the best place you can be. The folks here are the best and they've helped me in so many ways during my treatment.

Come back and ask any questions you have. Don't give up--you are obviously a strong woman and you can beat this

As a fellow survivor tells me all the time, "I'm sending warm fuzzies your way".
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
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Old 02-21-2010, 11:39 PM   #13
harrie
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Re: How can I keep my mother positive?

Hello Rosa and Rosa's mom,
It sounds like you are having side effects from the meds, many of which are used to counter the chemo side effects. Keep your med team posted on what you are going thru and I bet you will find the right combo to make your chemo tx much more doable for you. I had 2 of your 3 chemo meds and did very well and I was your same age. There are many meds out there to help make your life tolerable and manageable, and I am sure they will find the one that works very well for you.
Please keep in mind this is all temporary and before you know it, it will all be behind you.
This chemo regiment you are on is not all that fun, but it should be tolerable and manageable and not extremely unbearable. Hang in there and keep communicating with your oncological team there.
Plus, keep us all posted on your side effects. Guarantee there will be several of us that was there and can give you some good pointers.
Maryanne
ps....love the pic of your family! Which one is you?
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 02-22-2010, 07:13 PM   #14
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Re: How can I keep my mother positive?

All of your posts and encouraging words are helping me prepare for beginning treatments. Stage One IDC clear nodes and margins 1.7 cm lumpectomy 2 wks ago Her2 ++( 5.8 )ER and PR 10% + each....poorly differentiated. Mar 1st I meet with radiologist, oncologist and surgeon as a team to see what the next step will be. The chemo is the only thing that scares me, like Rosa's mother I fear it will kill me instead of the cancer. I am learning about what questions to ask and how to advocate for myself through all of your posts. Thanks so much to all of you.
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No family history of BC. History of cysts -left breast lump felt @ 1/1 had mammo and ultrasound 1/18, biopsy 1/22, dx IDC, Her2 +, ER and PR 10% each, 1.7 cm poorly differentiated. Lumpectomy 2/9 sentinel nodes clear, 6 biopsied all negative, margins clear. Meeting with oncologist, radiologist, and surgeon on 3/1 for initial consult.
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Old 02-22-2010, 11:17 PM   #15
harrie
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Re: How can I keep my mother positive?

I had a similar diagnosis to yours. After the dx, chemo also was the one thing that scared me too. I REALLY wanted to avoid chemo, BUT the good part is that it was not nearly like what I expected AND I am back to 100% AND I am glad that I did it.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 02-23-2010, 08:09 AM   #16
grammytotheboys
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Re: How can I keep my mother positive?

Thanks for the encouragement..believe me I need all that I can get! The bottom line is that I want to live a nice long life and watch my grandchildren graduate from high school and get married. Since the oldest is only two I have quite a few years to go. I also have rheumatoid arthritis which is pretty stable and has been well controlled so I am not a stranger to medication and/or side effects. But this is so different and the stakes are so much greater I am overwhelmed. I live alone (divorced) and have been unemployed since September '09 which doesn't help things either. What I do have is a group of good friends and my children and a sister who will be there for me.

I appreciate every realistic and positive story I read. Thanks again. Linda
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No family history of BC. History of cysts -left breast lump felt @ 1/1 had mammo and ultrasound 1/18, biopsy 1/22, dx IDC, Her2 +, ER and PR 10% each, 1.7 cm poorly differentiated. Lumpectomy 2/9 sentinel nodes clear, 6 biopsied all negative, margins clear. Meeting with oncologist, radiologist, and surgeon on 3/1 for initial consult.
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