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Old 08-06-2011, 10:14 PM   #1
hippynelli84
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help me help her

Hi everyone,

My name is nelli and my mother recently found out she has breast cancer. it is HER2 estrogen postive grade 3 in left breast, in right breast her2 estrogen and progesterone positive grade 3. i have no idea what this means.
She has already had surgery to remove the tumors.
her dr is suggesting Taxotere, Carboplatin + Herceptin (every three weeks for 6 cycles) 18 weeks
Herceptin (every week for a year)
Femarin Pill for 5 years.
Radiation after the 18 weeks of Chemo for 6 1/2 weeks on both breasts.

I have no idea what we are all doing here. My brother and i are estranged, i just started to develop a good relationship with my mom and dad.
From what i hear cancer treatment is hardcore to say the LEAST, and im pretty sure my mom and my dad are going to need me, and i just want to be prepared....can you help me a lil?
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Old 08-07-2011, 05:38 AM   #2
chekmark
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Location: Doylestown, ohio
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Re: help me help her

This is alot to absorb at first and so much to understand but once you start getting a clearer picture it becomes easier. I had exactly the same treatment but with no radiation. I have 6 herceptins to go (mine are every 3 weeks). The chemo will be the hardest part for her from my experience but very doable. It will be over before you know it. The herceptin is pretty easy I really have no side effects to complain about except some acne and joint pain. Herceptin has changed the outcome for all of us her2 sisters and she will be fine. You did not mention what stage she is or if she had a lumpectomy or a mastectomy. I am assuming lumpectomy since she will be getting radiation. Support is important and there will be down days but she will get through this. I remember thinking that I could not put one foot in front of the other and move forward but I did and I managed to work thru it all. I think the physical part was worse for me than the side effects of chemo. Going to work that first day with my wig on was hard but I had to tell myself that it was just as hard for my co workers to see me for the first time as well. Cancer treatment is not as hardcore as it used to be. She needs to tell the docs/nurses about anything unusal and they will work out all the kinks to make it as easy as possible for her. Stay strong and before you know it it will all be behind you. Becky and Bonnie are very informative and give great and encouraging advice. Hopefully they will both chime in. God bless you for being there for her. Good luck and keep us posted.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 08-07-2011, 01:00 PM   #3
hippynelli84
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Re: help me help her

oh she is stage 1 grade 3...but thank you so much for your kind words
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Old 08-07-2011, 01:14 PM   #4
Elizabethtx
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Re: help me help her

Hang in there! I am so proud that you are willing and able to help your mom. She will need you! The protocol (treatment plan) is standard. The Taxotere/Carbo will be the hard part. She will lose her hair, cause nail problems, slight nausea, possible neuropathy in her extremities. This sounds bad a first glance, but is much easier than other treatments. She will need someone to take her to treatments. Be ready to take care of little things, round up meals, cleaning, etc. Those are the things you just don't have the energy for! Once she is on just Herceptin she will recover quickly! I had to take off work during the first round of treatment but was fine during Herceptin. No real side effects. I see you are working on your relationship...let this be the time you both heal. You helping and her receiving your help! Blessings to you both!
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011








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Old 08-08-2011, 10:37 AM   #5
Deb33
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Re: help me help her

I finished my TCH protocol in June. The Oncologists are very good at handling side effects now. I have posted all of the little things that I did to make my experience more tolerable throughout the site and dont' want to bore everyone. If you want to email me directly, I'll reiterate those for you.

When I was diagnosed in Feb, EVERYONE I spoke to in the medical profession told me how lucky I was to be HER2+. That we have the most options available to us and an amazing success rate.

Its normal to be completely overwhelmed and freaked out. That part actually gets better. Just let your mom know she isn't alone in this and that you are there to support her.
__________________
11/19/10 Identified swollen lymph node
1/24/11 Mammogram showed microcalcifications - no mass
2/4/11 Diagnosed ER/PR- HER2+++
2/23/11 Began TCH protocol every 21 days 6x
5/23/11 Ultrasound of originally diseased lymph node shows normal
7/25/11 Lymph node dissection - 8 of 14 show disease
7/29/11 Double mastectomy with reconstruction (expanders)
8/29/11 Begin follow up chemo - Adriamycin 4 treatments every 2 weeks and Xeloda. Self inject Nupogen shots
1/6/12 6 weeks of Radiation finished
2/13/12 Last Herceptin/remove port
3/27/12 PET/Brain Scan NED :)
8/15/12 Final reconstruction - hello nipples, good bye expanders
9/14/12 Rejected implant/infection. Implant removed
5/6/13 Latissumis Dorsi surgery left side with expander

PS - my photo was taken 5 days after my double mastectomy surgery and 6 weeks after my TCH was completed
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Old 08-08-2011, 11:32 AM   #6
snolan
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Re: help me help her

I finished by TCH in Dec. As stated above it is very doable. You will find the infusion nurses are very helpful, they create a very relaxing enviornment during treatment. I would bring music to listen to as the benadryl she gets will make her very sleepy. Like everyone stated the time leading up to treatment seems the most over whelming but once you get started it will fly by. One of those things you have to experience before you understand. You and your mom will have a new normal with appointments and treatments, these too get less as time goes on. This past year for me has flown by. I get my last Herceptin treatment Aug 26th and it seems like this last one is taking forever to get here. Hope everything goes smoothly, keep us posted as this is a great sight to vent your frustrations or fears. We are all here to give you and your mom as much good support as possible. Good luck.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 08-10-2011, 11:10 PM   #7
Jackie07
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Re: help me help her

Hi,

8 years ago, I was also diagnosed with a stage I (cancer has not spread from the breast), Grade 3 (cancer cells look very different from normal cells and are fast-growing). In the back page of the booklet (by ACS? Komen?)given by the cancer center staff, I found many toll-free numbers and called many of them for free pamphlets/booklets... etc., anything I could get my hands on.

For many weeks, I continued to find 'treasures' in my mailbox. I found that experience heart-warming (that there are so many people/organizations care about me) and empowering (that the breast cancer community is full of survivors who are living and thriving.)

My church friends delivered food to me regularly while I was undergoing treatment. (They knew I was not a very good cook, and my husband only knows how to make tuna fish sandwich/ham sandwich which is not a 'hot meal' that cancer patients should be eating. (Chinese have some special guidelines regarding meal preparation for different kinds of patients besides the general rules: No raw food, no preserved food, no sea food.) Most of the meals were cooked with a lot of liquid for extra fluid and easy digesting...

It's also a general understanding that the patient should not be exposed to sad or unpleasant news/situation. This fits the modern neuroimmunology concept that 'positive thinking' (as well as exercise) increases the release of endorphin which helps improve the mood and wound healing.

Not an easy task - my 2nd Sister was here help take care of me in 2007 and almost wrecked my marriage (because she and my husband were having cultural clashes and were both totally 'stressed out'! So be sure to keep yourself in good shape and have your own support system while supporting your Mom.

Sending y'all good vibes.
__________________
Jackie07
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

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Last edited by Jackie07; 08-11-2011 at 05:19 PM..
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Old 08-11-2011, 12:50 PM   #8
BonnieR
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Re: help me help her

How wonderful that you are participating in your mother's treatment. You are a blessing! And this may be an opportunity to bring the family closer together. Cancer has a way of reminding us what really matters in life.
On the practical side, I see your mother and I have alot in common. I had the same chemo regieme. As others have said, it is not as hardcore as the old days. But certainly not a walk in the park, either. But they have lots of medications to relieve side effects. And not everyone has the same side effects. But we all get pretty fatigued. Esp around the 3rd day after chemo. Very achey. Maybe nauseous. No appetite. So it is good to see that she has easy to eat food in the house. Cheese, yogurt..high dense calories. Ensure drinks.
During treatment itself she should dress very comfortably and in warm clothes. The rooms are usually chilly. Bring reading material and snacks, water. My treatment room provided sandwich lunches. You can stay with her during the chemo but she may doze off due to the pre-meds (benedryl) that are given to avoid any allergic reactions. Really, it goes smoothly although it sounds scary!
Check out the American Cancer Society website for all kinds of good, valid information. They even take phone calls.
Gather a team. The doctors, social workers, family, friends. When people ask how they can help, tell them! Maybe bring mom a dinner, shop for her, visit with her, housecleaning....
Important to have someone go to appts with her with a list of questions and concerns. And to HEAR the answers and write them down! She is probably shell shocked right now.
That is enough for now! Just start gathering information from legitimate sources.
You have come to a great site for help and support.
Keep the faith.
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 09-29-2011, 01:51 PM   #9
stefanie s
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Re: help me help her

It must be scary not knowing what to expect since you have been estranged from you mother for some time. The good thing is that you are there with her now as she goes through her breast cancer treatment. The good thing with modern times is that you can find a wealth of information on forums like this. I am in your shoes. I am new to all this and have been trying to read up as much as possible to understand the whole process. Keep your spirits up, and I am certain your mother is glad to have a relationship with you now more than ever. You are her support system and everyone is here for you.
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Old 09-30-2011, 06:12 AM   #10
NEDenise
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Re: help me help her

Welcome!
I have been where you are. Before my own diagnosis, my mom had lung cancer, and I helped care for her, went with her for appointments and treatments.
Having you to lean on, will be such a comfort to her. I agree with Bonnie...cancer has a way of putting life into the proper perspective. I wish you, and you mom all the best.
Please, keep us posted.
Ask any question you want.
Ask for support, when you're feeling down, confused, worn out.
There are friends here to help almost 24/7!!
Stay strong!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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