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Old 11-20-2007, 06:38 AM   #1
Believe51
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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
Unhappy ~White Count At 900!! Uggh!!

Despite the disciplined measures to eat and supplement, Hubby's white cells are at 900!! Today we will be of to get a dose of Neulasta to hopefully keep him on his regime timewise. You would think that one would feel weak with numbers that low but not My Oak. I just thought I would write, especially for our newbies who read such signatures as his, to help them to keep the faith. Although the Taxotere did work and almost achieved NED, he knew when it stopped working. He knew the Tykerb/Xeloda combination NEVER worked and that it made his numbers skyrocket. But he has said that he feels that this combo IS working!! Now no one knows for sure right now but I have to go by his feelings since they have always shined through for everything since the before we started this journey (he knew he was direly ill and an IBC dx almost always starts at stage 3B & above).

So friends, although this low count is disturbing to me, we were aware this may happen. We were ready and now we will fight back for that too. And to all our Newbies, I usually write more frequently to each and every one and if I have missed you Welcome!! Count our blessings and fight the best way we can. Sending love and hope>>Believe51

PS: Wanted to let you know he is taking all of his vitties like a good boy. Thank you My Supplement Gurus!! LOL!
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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!!
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Old 11-20-2007, 08:46 AM   #2
PinkGirl
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Thumbs up Hi

Hi Believe
I am very happy that Ed feels that this combo is working. When my blood would go very low, my onc said it was because the chemo was "working".

Just my 2 cents again (don't want to start any controversy). I had two docs and 2 oncs who told me that the chemo was going to wipe out my white cells regardless of what I ate or how I supplemented. They said if I ate well and took supplements that the chemo would just "gobble" that up along with everything else.

I felt absolutely fine when my white cells were low. It was when my red cells were low that I couldn't lift my head off the pillow. We must have a different way of measuring up here across the border. A normal white cell count is anything over 6 or 7. I went to 0.8..........they called me bubble girl. I just had to wait, and within about ten days, the counts came back up.

Just my 2 cents
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 11-20-2007, 09:10 AM   #3
tousled1
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I'm with you PinkGirl -- I felt/feel like **** when my red count is low. Right now I'm lucky if my hemoglobin gets up to 9.7! Absolutely no energy. All my counts are low now. With the white counts when they get low you must worry about infection.
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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 11-20-2007, 10:06 AM   #4
hutchibk
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WBC that low means that you are in your 'nadir' (the point in your treatment when the counts fall to their lowest point, before they hopefully start to rise again on their own, http://www.chemocare.com/whatis/what_is_nadir.asp).

And that you are neutropenic... (meaning neutrophils are lower than 2000 and you are extra susceptible to infections, especially food borne illnesses.... http://www.nhlcyberfamily.org/neutropenic.htm)

I know you know all of this Marie - I was posting it for any newbies who might benefit from this thread...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 11-20-2007, 11:41 AM   #5
nitewind
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Just thinking of you and your Mighty Oak, Marie and wanted to let you know that you are always in my prayers. He's been good at knowing what's working and what's not so he's probably right on this one too.
Love to you both
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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