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Old 05-28-2011, 06:02 AM   #1
Sheila
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Neupogen & Neulasta Bone Pain YIKES!!!!!

Just wondering what any of you did for bone pain (if you had it) while on these drugs...I am on both to maintain my white counts for the Halaven.....which by the way, my last CEA was down from 16.4 to 2.1 (below normal ) which is a YEAHHHHHHHHHHHHHHHHHHHH
On the down side, this drug has trashed my white cells like no other...I have been on Neupogen for 2 months and added Neulasta to the mix over a month ago....truly, my hipbones are so sore I feel like I have no padding....I have dropped some wait, but from a side view, I still have plenty of junk in my trunk.
I have tried Extra strength Tylenol...no help, and Ibuprophen...some help....just wondering if there is something else I havent thought of...it truly is a pain in the a**....and the femur, and the arms!
Feeling stronger every day since my episode last month...thinking about shopping, which is something I haven't wanted to do in a while, thats always a good marker for me!
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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
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Old 05-28-2011, 08:35 AM   #2
Colleen007
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Hi Sheila,

I have been on Neupogen and Neulasta for awhile...the pain will lessen over time (or maybe I just got used to it??). Meanwhile, I used Ibuprofen...you can get a prescription for 600 or 800mg tablets (you can also just come up with those amounts by taking multiple pills out of the bottle you can buy at the drugstore). Even as the pain improves, I was told to not skip the next dose...that helped to stay ahead of the pain.

Hope this helps and I hope you feel better. Great news on the Halaven - I love seeing that your markers dropped.
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Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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Old 05-28-2011, 11:19 AM   #3
ElaineM
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Wink Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

First of all congratulations on the tumor markers !! I am so happy for you !! Terrific News !!!!!!!!!!
You, Pam and TriciaK are our Halaven trail blazzers for sure !!
I never needed those drugs for white blood counts, because I have been working with a naturopathic physician who has helped keep my blood counts reasonable the last 12 1/2 years.
I am not sure what to do about the bone pain either, because I never needed anything for pain related to cancer treatment.
I wonder if adding some calcium, vitamin D and magnesium and eating healthy food for the the bones and bone marrow where blood cells are made would strengthen the bones and bone marrow enough to eliminate the pain?
Do you want to talk to a nutritionist, naturopathic physician or integrative medicine M.D. about that?
Another idea would be to use pain patches on the areas that hurt like Salonpas, or other patches with menthol or heat. The patches can be found at many pharmacies. However one cannot use them for more than 6-8 hours at a time. Occassionally I simply apply a little Vicks (same ingredients as the patches) and use a heating pad set on low or medium on a painful area for a few minutes to reduce occassional pain from osteoarthritis.
Warm or hot showers help for muscle related pain too.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 05-28-2011, 12:00 PM   #4
StephN
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Holy hatracks, Batman! Your latest CEA number is almost as low as mine!!! That deserves a big round of standing applause.

I had severe pain in my hips and lower back with the white count boosters. Was worst first week or so then the neurontin kicked in. I also used the heating pad to help me fall asleep.

I may have had vicodone for a few days, but that could have also been with Taxotere.

Don't lose too much weight, you need a little extra to run on while under treatment.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 05-28-2011, 01:11 PM   #5
sassy
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Sheila, I like those numbers!!!

Most of my pain was in the sternum and hips. I used darvoset for a time, then switched to neurontin which also helped with hot flashes and other issues I was having.

Of course Retail Therapy may be the best!
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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 05-28-2011, 04:07 PM   #6
JennyB
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Sheila,

I had lots of bone pain whilst on Taxotere followed be Neulasta shots I made sure i took 4 hourly pain meds for the first week or so after treatment - panadiene and whinged a lot to my husband. Shopping sounds like a healthier option!!

Jenny xx
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 05-28-2011, 05:28 PM   #7
tricia keegan
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Sheila I was on neulasta but did'nt know to expect bone pain so assumed it was part and parcel of the chemo drugs so just put upn with it !!!

I hope you get through it okay and find a drug to ease the pain!! xx
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 05-28-2011, 06:39 PM   #8
Chelee
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Shelia,
First of all...big congratulations on your TM'ers dropping! That is great news! If you are going to pay a price like bone pain from Neulasta--it's nice to know it's not all for nothing. It's so nice to know this Halaven bomb is working so well for so many of our members. Yeah.

I had never heard of anyone being on both Neupogen AND Neulasta? I see Colleen has been on both too...so I learned something new today. If Halaven has trashed your counts that bad I can only imagine what it's done to those nasty little buggers. (Gone!)

I had pretty bad bone pain from the Neulasta...but not with the Neupogen. What helped me with the bone pain from Neulasta and Taxotere was Norco. You might ask your onc for a script of Norco and take Ibuprofen as needed...it does help. Ask for Norco over Vicoden--Vicoden has Tylenol in it which is hard on the liver. When it comes to the Neulasta/bone pain you might get surprised. When I did TCH the first 2 times I had Neulasta the bone pain was bad but after that it was barely noticable. I've seen lots of other women say the same thing. So hang in there...maybe you will luck out too. Hope the pain gets better. If not...ask for some meds till it does.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 05-29-2011, 07:33 AM   #9
Becky
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

I took daily Leukine and not Neulasta or Neupogen but Leukine causes the bone pain too. Mine was primarily my sternum (bad - thought I was having a heart attack or something) and my long bones.

I took nothing because I wanted to monitor the pain but for the legs - walking around and staying mobile helped. I felt the first day of shots was the worst day. The subsequent 9 days of shots were not so bad.

I think if ibuprofen works for you, stick with it (it is my OTC pain reliever of choice).

I am thinking of you Sheila. It looks like with your markers, you are going in the right direction.

Love and hugs
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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 18 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 05-29-2011, 09:00 AM   #10
chrisy
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

wow sheila, great news on the tm's - I'm with Chelee on that! I don't have any input on the bone pain, but I've seen you on retail therapy and know you always respons favorable to that

Take care, my friend!
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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 05-29-2011, 11:51 AM   #11
SoCalGal
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Yay on not making a mark with the markers - love that news. RE the bone pain - the only thing I can think of (besides pain pills - xtra strength tylenol then two hours later a couple advil if you are allowed) is a hot bath right before bed. Floating in a hot bath helps me quite a bit with aches, pains and just to relax.
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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.
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Old 05-29-2011, 01:09 PM   #12
Deb33
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

For whatever reason, my Oncologist has us take Clariton for the 1st 8 days of our chemo treatment - one of the weird side effects is it helps with the bone pain. Good Luck.
__________________
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 05-29-2011, 04:08 PM   #13
Elizabethtx
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

I only took neulasta, but had pretty severe bone pain, arms, hips, legs. I did find after the second shot it was not as bad. So, I would think the body gets used to it. Congrats on the numbers! It looks like the ticket!
__________________
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 05-30-2011, 04:53 AM   #14
Mary Jo
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Oh I remember the pain of Neulasta. Usually about 20 hours after the fact......OUCH......it hurt so bad. I, too, took Ibuprofen and although I can't say it helped much, after a day or two things were better. On a positive, it did was it was suppose to do and it always kept me on my bi-weekly chemo schedule.

Hope the pain lessens Sheila and I'm sooooo happy your CEA number is normal. Yep, that is a HUGE YEAHHHHHHH.

Blessings and much love,

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

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Old 06-03-2011, 10:34 AM   #15
Ellie F
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Hi Sheila
I also had terrible hip and lower back pain with neulasta. my onc recommended taking ibuprofen 6 hourly and paracetamol 4 hourly for 48 hours after the injection.
Great news otherwise!
Ellie
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Old 06-08-2011, 12:44 AM   #16
Joan M
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Sheila,

Great CEA number. Wow. I too had trouble with my white counts, even on Taxol.

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 06-08-2011, 08:28 AM   #17
Margerie
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

totally unscientific.... but much anecdotal evidence that taking an OTC Claritin the morning of your neulasta injection and then 3-5 days afterward can really improve bone pain symptoms. The advice was too late for me (ugghhh that pain was really awful) but I told my mother about it when she was having chemotherapy and she never had ANY pain from her neulasta treatments.

Just a thought, and if you try it, I hope it helps!!!!
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 09-05-2011, 02:30 AM   #18
darcy22
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

I had my last Neulasta shot in June -it's now SEPTEMBER and my back and shoulders are in so much pain - STILL! THe Oncologist says it's not from the Neulasta, but the pain is the exact same as the day after i got the shot - Is this happening o ANYONE else? HELP!
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Old 03-22-2012, 11:12 AM   #19
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

Neupogen gave me very bad bone pain, so bad that I woke up one night unable to move, but I found that plain panado, if taken regularly as pain management worked. don't skip doses though, and don't let the pain get to an unmanagable level. The issue I am struggling with is that it is two weeks after last dose of neupogen and I am still getting joing and bone pain. Not as bad as during the injections, but enough to make me concerned. Has anyone on neupogen experienced that?
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Old 03-22-2012, 05:46 PM   #20
Vicki revised
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Re: Neupogen & Neulasta Bone Pain YIKES!!!!!

I called Neulasta the "hell shot". First time it was worse than being in labor--in my hips and back. Heating pad, Lortab, aleve. Then another patient told me to take Zertec 2 days before next shot and to take pain meds morning of the shot--the difference was unbelievable! I've been told by so many nurses pain is manageble if headed off in advance. I believe it. Procrit not as bad.
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Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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