 |
02-20-2008, 11:31 AM
|
#1
|
|
Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
|
still here
Hi everyone, I've been following your posts and thinking about all of you and just thought I'd give a little update. I had a scan 2 months ago and it was t-riff! Virtually no cancer activity anywhere, which I think I posted. My 3 week chemistries continue to look perfect i.e. as far as blood work goes my organs are functioning very well. I'm scheduled for scans at the end of march and continue to take 5 tykerb a day and about 4 xeloda every day one week on and one week off.
In some ways though I feel as though I'm falling apart. I had 2 different strains of influenza almost back to back and a minor cold. I've had a yeast infection (probably due to the Minocycline for the tykerb rash) and 3 periods in 2 months. The other thing is that while all my blood work has been good, my platelets have continued to drop. They are not at a dangerous level as of 3 weeks ago and I'm getting more blood work with my every 6 week zometa on Thursday. I have no symptoms of thrombocytapenia (sp?), but I'm concerned. My onc thinks that maybe it is just being on xeloda/tykerb since last May that has contributed to that. What do you guys think? The other concern is that it is a sign of liver disease, but she said that my blood tests (ALT, AST, Alk phos, bilirubin, albumin) would be reflecting that and they are not. Or, of course, there is always leukemia, but I have no other symptoms.
I also have been having right side rib pain which concerns me and I can't tell if it is muscular, skeletal or visceral. My sister said if it was the liver and was causing pain my blood work would not look so good and my scan was only 2 months ago and there was nothing to worry about. Also the external exam reveals no signs of distention in the liver.
My boyfriend, yes that is going very well , said he talked to 3 people yesterday who have had the crud that is going around who complained of rib/side pain on the same side.
I'm hoping that the periods are frquent simply because I'm perimenopausal. I just have so many more variables than "normal" people so I'm always worried. I have a well woman visit tomorrow and am hoping to have an FSH either there or at the cancer center to check those levels.
And I'm always worried about the little bit of scarring in my liver from the cancer in the past. It is basically cirrhosis, but she says it is minimal.
If any of you have any advice/thoughts on the low platelets, frequent periods, rib pain, bloodwork, cirrhosis etc., I would value it tremendously.
Life is good and I want it to stay that way (duh). I have a boyfriend who loves me and treats me fabulously with whom I have a lot of fun. I have 2 beautiful children who are blossoming (and challenging of course). My oldest got into the jr high/high school of choice that we were hoping for for next year. I love working at the bakery everyday with my sister and the amazing people there (man we have a lot of fun). My friends are awesome and beginning new things in their lives that are exciting. My family continues to be wonderful and really fun. My house looks like Bagdhad which drives me crazy, but sometimes you just have to have a fort in your family room for a week.
I could really use some smart thoughts on some of these things and I know this is the best place for those.
In the mean time I pray for all of us and our loved ones and for the researchers and doctors working hard on our behalf. I was happy to see that the Herceptin DM1 trial is going so well for several of you and that there is a trial location in Denver. My doc's office is doing a trial of Iressa and Arimidex or Fulvestrant and Iressa-anyone know anything about that combination? I am also still curious about Bavarian Nordic's trial of the MVA-BN- Her2 vaccine that is in California and trials with Nexavar (sorafenib). I'm also alwyas thinking about the newer radiation techniques for the liver (RFA, Cyber knife, SIR spheres, etc.). Again any thoughts are welcome.
So in love with all of you and life in general,
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
|
|
|
|
02-20-2008, 12:24 PM
|
#2
|
|
Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
|
Hey Joy
Making a latte right now to celebrate your update. So happy things are going better for you Sweetie. I also heard the word 'LOVE' and that makes me smile right from my toes. I think of you often and there are times while making a latte I rejoice having you in my life. Hope you feel 110% better with each passing day. Lots of Love and hugs>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
|
|
|
|
|
02-20-2008, 12:37 PM
|
#3
|
|
Senior Member
Join Date: Aug 2006
Location: So California
Posts: 223
|
Thanks for the update
Thanks for the update Joy. You are one of the persons I have come to know and love thru this website. I celebrate your successes with you! Congrats on the new boyfriend. He sounds like a great guy.
Lisa
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
|
|
|
|
|
02-20-2008, 01:17 PM
|
#4
|
|
Senior Member
Join Date: Aug 2006
Posts: 3,380
|
Joy,
You have been in my thoughts and it is good to hear from you. I wish I had some answers to your questions, but I don't. Just wanted to say keep up the good work.
Hopeful
|
|
|
|
|
02-20-2008, 01:40 PM
|
#5
|
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
Joy
It is truly a JOY to read your posts, you are always upbeat and positive....looking at the glass FULL instead of half full....it sounds like you are living true happiness, and you so deserve it. It is always great to read your posts.
__________________
"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
|
|
|
|
|
02-20-2008, 03:35 PM
|
#6
|
|
Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
|
Congratulations on all the wondeful things going on in your life. I am hoping with all of my heart that your life continues this way. By the way, how did you find that boyfriend?
|
|
|
|
|
02-20-2008, 05:41 PM
|
#7
|
|
Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
|
Great news and great update Joy. I had the flu also, influenza A and was I sick. The cough finally subsided but it took 4 weeks. I was really laid up for 2 weeks. So much for this year's flu shot helping. This is the first year I have had the flu and I have been taking the flu shots since I started my career in dental hygiene 35 years ago. Retired for 5 years now. Keep up the good work Joy.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
|
|
|
|
|
02-20-2008, 05:42 PM
|
#8
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
So glad to hear that things are going well for you and your family! One comment...I had very frequent periods for about 18 months before they quit altogether...and very heavy too...I had always been very regular, light, no muss no fuss...not for the last 18 months though!!! Sounds like that is what is going on for you!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
|
|
02-20-2008, 05:46 PM
|
#9
|
|
Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
|
Yea! for all the good, and fingers crossed that the not-so-good will resolve soon. Its good to hear from you. Keep in touch and keep on enJOYing life!
__________________
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.......
14 YEARS NED!
|
|
|
|
|
02-20-2008, 06:32 PM
|
#10
|
|
Senior Member
Join Date: Oct 2005
Posts: 476
|
I was thinking how long we haven't heard from you Joy. It is nice to know that you are, not only doing okay, but fabulously well. Good for you!
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
|
|
|
|
|
02-20-2008, 09:54 PM
|
#11
|
|
Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
|
Joy, great to hear from you and especially that you are suffering from the flu and other interesting things rather than,well, other more interesting things.
I think I might know somebody on the BN vaccine trial - I'll check if it is who I think it is and if you want I do have a phone number.
Not much help I'm afraid on the other stuff...
__________________
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
|
|
|
|
|
02-20-2008, 10:13 PM
|
#12
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
JOY...I don't really know info on the chemo questions but I just wanted to say hello and good to hear from you and YEA! on the boyfriend. I am happy for you! LUV is good for us I cannot believe that it is coming up on a year since the hilarious posts about the tykerb tigers and diarrhea divas...and I remember the posting about remodeling your bathroom into a library in prep and all the toilet jokes. lol!
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
|
|
|
|
|
02-20-2008, 10:29 PM
|
#13
|
|
Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
|
Glad to hear from you.
I think your sis is right. I know someone with liver disease, Hep C, and other than test results, she feels no pain.
I had crime scene periods before chemo (periomenopausal) and often. It may be worthwhile to pursue Lupron to make them go away. Has it's drawbacks but.. radical periods get old.
Nice to hear from you, Bev
|
|
|
|
|
02-20-2008, 10:58 PM
|
#14
|
|
Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
|
Joy, it was nice to see an update on how you are doing, I've missed your up beat posts. I'm so glad you have a special friend to share your life with. I'm sorry, I'm no help about the chemo. Just great to see your smiling pic on here!
|
|
|
|
|
02-21-2008, 02:22 PM
|
#15
|
|
Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
|
Joy always a pleasure to hear from you. Congrat on the good scan results!! that's great. However sorry that you have some unexplained pain and therefore worries and aout the illness tho. But really I am so happy that you have a boyfriend this is great and glad your life is good, and the way I see it, it will be like that for a long long long time.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
|
|
|
|
|
02-21-2008, 04:10 PM
|
#16
|
|
Senior Member
Join Date: Nov 2007
Posts: 210
|
joy.. i have literature on tykerb.. i will try to do some reading tonight... if i recall .. it may have some thrombocytopenic problems.. the first time your scans dont come back perfect.. talk to your doctor about trastuzumab-dm1 trial.. all the girls here are kicking booty in that trial..
run to live..
|
|
|
|
|
02-21-2008, 06:09 PM
|
#17
|
|
Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
|
Joy, it made my day to see your wonderful smile and hear of the JOY in your life! There will always be worries and concerns for us as you well know, but cherish the joyful moments. I pray they may increase and continue for you! I have found in my many years of fighting BC that we notice and stress over so many things, some worth our concern and some we should ignore. It is so hard, and we do need to be alert, but sometimes we just need to let go after we have done all we can. I have this quote framed on my office wall (and I try hard to heed it!):
Do not be overly concerned with what will happen tomorrow. The same loving Father who cares for you today will take care of you tomorrow and every day.
Either he will shield you from suffering or he will give you unfailing strength to bear it.
Be at peace then and put aside all anxious thoughts and imaginings.
Frances DeSalas
1567-1622
That said, I might add that I also agree with all the wonderful people on this board who often remind us to be our own health advocate, to stay on top of it all, and insist on our concerns and needs being met, not ignored.
Sometimes if you aren't making waves, you aren't kicking hard enough! Please let us hear from you more often. We care a lot about you, rejoice in your good news and empathise and pray about your concerns. Hugs, Tricia
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 10:12 PM.
|
Linear Mode
