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07-14-2011, 10:46 AM
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#1
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Senior Member
Join Date: Feb 2011
Location: San Diego, CA
Posts: 133
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Bone Pain
I am new to this world and am in the early "freak out" day's of hypochondria. Every new sensation is the c invading something somewhere on me - I know this will go away in time.
My question - what does it feel like when you have spread to your bones? Is it an overall ache like I had during chemo? Kind of like coming down with the flu? Or is it a specific pain in a certain area? Or a pain only with pressure?
Sorry to be crazy - I am sure you all remember these early days.
__________________
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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07-14-2011, 02:45 PM
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#2
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Bone Pain
Deb,
I see you are still on Herceptin. I was very achy and had lots of joint pain while on it - I think this is pretty common.
Try not to worry too much - I know that's easy to say, but try. You can mention this to your onc. when you go for your next Herceptin infusion.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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07-15-2011, 06:05 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Bone Pain
The "T" part of your chemo also does this and it can bother you for quite a bit longer than you think.
__________________
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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07-15-2011, 02:28 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Bone Pain
Deb,
All of us on this board can relate to those "freak out" days as you call them. It's a very normal part of living in cancerland...but in time it will get better. That said I really have to agree with Becky. Most likely it's the Taxotere that's responsible for any aches or pains your having. I did TCH and it lingered quite a while after trt was finished.
I have bone mets to both hips and it is a more specific pain. Some of the pain does radiate to the entire hip area...but the main pain is in the hips itself.
Your body has been through alot...but given a little bit more time I think you will be very surprised at how good you will feel.
Chelee
__________________
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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07-15-2011, 02:35 PM
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#5
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Senior Member
Join Date: Feb 2011
Location: San Diego, CA
Posts: 133
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Re: Bone Pain
Thank you SO much for your feedback - I really appreciate it and have climbed off the ledge for awhile.
__________________
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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07-15-2011, 03:22 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Bone Pain
Deb,
Hang in there. Aches and pains will get better in time, and the constant worry will abate.
BTW--It isn't fair that you look THAT Fantastic BALD!
__________________
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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07-15-2011, 03:34 PM
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#7
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Senior Member
Join Date: Feb 2011
Location: San Diego, CA
Posts: 133
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Re: Bone Pain
Oh gosh - thank you so much - it seems I can't remember having hair (except clip on hair with wigs). I even dream with hair. I know that this too shall pass.
__________________
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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07-18-2011, 02:54 AM
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#8
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Senior Member
Join Date: Jan 2011
Posts: 40
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Re: Bone Pain
I'm fairly new at this, too, six months into treatment. I do have general overall bone aches with the treatment. I have bone mets in my spine and sacrum that are pretty heavy. Before diagnosis, I assumed it was my arthritis acting up for months. It was very specific to my lower back and totally different from the general bone aches. The day I got the news of the mets, in fact, I could barely sit at work, and I had to pace around. The pain was up there with having a kidney stone, and that thought actually crossed my mind, it was just in a different place than where I've had kidney stones! My scans show that I have a compression fracture in my spine from the cancer weakening the bones. Anyway, just thought I'd let you know that my pain associated with the mets has been very, very specific and unlike general bone aches! My smaller mets in my rib, sternum, and upper arm I haven't really felt anything. Glad youve talked yourself back from the ledge! I hear you, I feel like I peer over the ledge with fear every time I feel something new! This sure is a bumpy, sucky ride we're on! Glad we have the support of this forum to help keep things in check!
__________________
Krissi
12/27/10 - IDC, rt breast (approx. 15 cm), lymph nodes, age 36. 1/7/11 - stage 4 IDC, extensive liver mets, Bone mets (spine, sacrum, rib, sternum, upper arm), ER-/PR-, HER2+++; 1/12/11 - port, 1/17/11- startweekly Taxol/Herceptin, monthly Zometa
3/8/11- decrease in all tumors, bones healing. 3/11- 3 wks on/1 off Taxol/Herceptin, +Zometa
6/6/11 - decrease in all tumors, healing bones, 2-4 new liver lesions. 3 wks on/1 wk off Taxol/Carbo/Herceptin, +Zometa
7/29/11 - liver progression, others stable; 8/11-drop taxol/carbo, start Navelbine
12/11 - liver progression; begin AC, drop Herceptin;
1/12 - liver enzymes normal, 2/6 results show regression in liver, stable others, but 9 tiny brain mets (largest 7 mm). Begin 13 WBRs 2/6; 2/29-start Tykerb, 3/7, start Xeloda
5/2012- liver progression and regression, liver biopsy confirms HER2+++. drop Xeloda, start Herceptin, Tykerb, Zometa.
5/2012- brain MRI shows all lesions gone except 1, 2mm shrinking!
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