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Old 05-20-2008, 07:58 AM   #1
KelliD.
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Red face Next leg of the journey

Hi all! Got the pathology back last week- total of 4/28+ lymph nodes. Went yesterday & got my drain tube out (OUCH!!!) & staples out. Now I'm awaiting PET scan to be scheduled & I go back to the onc next week(Wed.) to see when chemo starts. I'm alot weepier lately, like it's all sinking in since, hopefully, I'm done w/ surgery now. Went & got my hair cut short, thought it might make the inevitable easier. I guess I'm rambling, but just wanted to check in w/ everyone. Blessings, Kelli
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Kelli 40yrs. at dx 3-14-08, IDC, ILC,DCIS RB
Lumpectomy w/ snb 4-22-08 2/4+
ER+(5%) PR+(5%) Her2+(3+)
Axillary Node Dissection & Port Placement 5-08-08 2/24+(Total 4/28+)
4 dd AC/ 4 Taxol w/ Herceptin
Herceptin til July '09
Radiation 37 tx starting 10/20
Tamoxifan
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Old 05-20-2008, 08:16 AM   #2
Mary Anne in TX
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Kelli, you're getting ready to see just how brave and wonderful you really are! Losing our hair is not what we all wait our life for, but it is an adventure. It's our outward sign of the war going on inside! And more of us are winning the battles now! Stay determined and hopeful and lean into the love and wisdom this site provides! God Bless you, ma
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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 05-20-2008, 07:02 PM   #3
Joan M
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Hi Kelli,

I totally relate to how you feel.

I too was very weepy in the beginning, and went to get my hair cut short also.

I think it got easier as time went on.

At first, it's all such a shock.

You'll do fine.

Best, Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 05-20-2008, 09:28 PM   #4
sassy
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Hi Kelli,

A lot of people have been where you are, and are doing well now. We are here for you...stay in touch.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 05-20-2008, 10:38 PM   #5
Bill
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Hi Kelli! Like you said, "the next part of the journey"....You are a strong warrior or else you would not be here, plain and simple. Strength and perseverance has gotten you this far, and it will carry you the rest of the way. We are here for you if you need us. This goes for everyone. As a group, we have big ears for listening, and strong arms for hugging, and large shoulders for crying against, as you need. Praying for comfort and Peace for you all, Bill
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Old 05-21-2008, 09:11 AM   #6
CindyE
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So good to hear from you and don't worry about being weepy. We all go through times of being emotional during this journey. You are a fighter and I will be praying for you to have strength and courage as you face each new day. Take care and just take one day at a time,

Cindy
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Cindy

L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008

Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!



I am calling this my pink journey
Follow my journey into the pink at my blog here

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Old 05-21-2008, 05:09 PM   #7
Gerri
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Hi Kelli,

Waiting for the unknown is the hard part, afraid to start chemo but more afraid not to. Once you settle into a routine and know what to expect you will feel more at ease. We have all been there and understand your weepiness. Being diagnosed with cancer is a major reality check. Time will help you accept the reality and you will be amazed at the strength you will find within. I thought that losing my hair would be devastating beyond measure. I was amazed at how quickly I adapted to that bald head staring back at me from the mirror - not a pretty sight, but one I grew to accept.

Hang in there, you will do great.

All my best,
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault

Last edited by Gerri; 05-21-2008 at 07:10 PM..
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Old 05-21-2008, 05:30 PM   #8
chrisy
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Kelli,
the hair thing is hard - I mean, we all know its JUST HAIR...but...it's a visible sign of the battle that we'd rather not have to fight.

I like the way Mary Anne put it - you can have a visible reminder of how strong you are, how much of a fighter you are. I wish someone had said that to me at the time!

If you're not comfortable with the bald thing in public (I wasn't), cover it up - wig it, hat it, wrap it, or forget it. If you intend to wear hair, get a really good wig.

Believe it or not, you can also have fun with it. OK, maybe not as much fun as Disneyland...but some of the things that made it easier for me were going to the local cancer center where they have 'free' wigs...and getting a bunch of hair that was TOTALLY not me! I felt like a spy. It was fun walking up to people and having them not recognize me.
Even my husband passed me on the street and didn't know me. That was especially delicious because I was able to torture him over that for some time LOL. And it's really easy to apply sunscreen although you need a LOT more than before.

Basically, Kelli, you just do what you can. My priority was I wanted to be as comfortable as possible...for me that meant I just wore a baseball cap most of the time - even at work. I'd "wear hair" for special occasions, or when I wanted to be a spy.

Do what feels right for you...and keep your eyes on the (recovery) prize!

Chris
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Chris in Scotts Valley
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 05-21-2008, 08:50 PM   #9
Bill
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Kelli! Been thinking about you. I hope you have felt the thoughts and prayers wrapped around you. Please let us know how we can help. Love and prayers for you, Bill
(ps to Chrisy- been thinking of a suitable nickname for you, it's hard to beat "Chrisy", though, but now you have me thinking......"spy", "the Mole", or maybe...."Secret Squirrel")
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Old 05-21-2008, 10:29 PM   #10
Jean
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Dear Kelli,
Of course you feel weepy, that is normal....you mind and body have been through a shock and it takes time for your mind to truly accept, cope and deal with all these new events that are happening to you.

Be patient with yourself - if you feel weepy, then allow yourself a good weep or two...we have all been there
and won the T shirt.

Just remember if the chemo is doing that to your hair...well, it is also doing a job on the cancer.

All good wishes,
Jean
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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 05-21-2008, 11:37 PM   #11
harrie
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Kelli,
If the mood strikes, allow yourself that weepy time or even a big sobby cry or scream in your pillow. Good release.
We will all be there for you as you enter your chemo fight.
Just to let you know I have a very good friend here who was in her early 40s with stage 2 bc. She had her chemo, it's been 10 yrs now and she is doing absolutely perfect...NED.
Before I started chemo, I looked at her and just knew, if she could do it, and be like she is now, so can I!
We will all be there for you.
Aloha,
Maryanne
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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 05-22-2008, 12:17 AM   #12
madubois63
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Kelli - You are more than enough allowed to weep. One thing I found that really helped me was to go to to the beach (I live on Long Island, but you can go to a state park, the middle of the woods, a desert, whatever...) and scream in to the wind. Don't care what anyone else thinks. This is your pain and you need to deal with it and get over it. Remember pain is just a thing to deal with. Do not let it take you over!! If you need to discuss something for your nerves (ex: ativan) or something a little more long term (zoloft or something similar) Do not ignore this. Your body and mind are going through a lot of changes and sometimes a little boost can really help. After fighting for my life, I felt like killing myself?? I didn't understand it, but the drastic hormonal changes were making me suicidal. After 2 weeks on Zoloft, I was me again and I wasn't crying at everything.

The haircut was a good thing. I like Chris think getting a few "fun" wigs are a good thing. Call American Cancer society to see where the closest and next meeting of "Look Good Feel Better" is. They teach you things you need to know about skin, nail, scalp, and wig car. They give free wigs and you gt to go home with a big box of free makeup (Mary Kay, Avon, Clinique, Revlon...). If you've had a relapse, you can go again. Check out "HeavenlyHats" on the internet. They will send you a free box of hats and scarves. It' all new stuff and some of it is designer and it's fun to get a surprise in the mail!! I personally liked wearing "newsie" type hats, and you can put pins in the brim of the hat. You can get them at Target or Walmart pretty inexpensively. When wearing your wig, do NOT go anywhere near a hot oven or a bbq. I melted my bangs making fries for the kids.

Try to remember that loosing you hair is showing that the chemo is working. Oh, also stay away for swarms of mosquitos. Whenthey get in the wig, it can be awful (yes this did happen to me). Always keep and extra kerchief in the car of you pocketbook.

When you know for sure what chemo's you will be taking, let us know. If you are taking Adriomycin, bring a frozen drink with you. while they are injecting the stuff, drink the smoothie. Keeping your mouth frozen will help keep you from getting mouth sores. No matter what what chemo you get, drink LOTS of water!!!! Add crystal light if you have to, but get a lot of water. It really helps, That's all for now, Good luck and keep asking questions, venting and fighting!!!
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 05-22-2008, 08:05 AM   #13
KelliD.
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Smile

Hey everyone! Thanks you SO much for your support & encouraging words!!! I can't begin to tell you what a comfort they bring me during my occasional "freak outs" !! LOL I will keep you informed!! Hugs & Blessings, Kelli
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Kelli 40yrs. at dx 3-14-08, IDC, ILC,DCIS RB
Lumpectomy w/ snb 4-22-08 2/4+
ER+(5%) PR+(5%) Her2+(3+)
Axillary Node Dissection & Port Placement 5-08-08 2/24+(Total 4/28+)
4 dd AC/ 4 Taxol w/ Herceptin
Herceptin til July '09
Radiation 37 tx starting 10/20
Tamoxifan
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Old 05-22-2008, 01:06 PM   #14
BethC
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Posts: 98
Kelly, it will get better once you get started - it is so hard waiting. Good luck to you!

Love,
Beth
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DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08

Married 16 years!
3 kids - daughter (10), twin sons (7)
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