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02-05-2014, 12:37 PM
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#1
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Senior Member
Join Date: Dec 2012
Location: Attica, IN
Posts: 371
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Pain is exhausting and a crying again. Help...
Today we had more snow and my boss said don't come to work the roads are shut down.
My onc did the hormone test and it says I am post menopausal and retest in two months. He switched me to arimidex.
I am past the point of thinking of a reoccurance it's this pain. I feel like I am trying everything; tens machine, alpha lipoic acid vitamin, pain meds, and now they added neurotoin which I did that faithful for a week (maybe not long enough).
I scheduled a 2nd appt for a second opinion with Dr. Kathy Miller for today but can't go because of snow. Rescheduled for feb 20th.
I think is this neuropathy? Sometimes I think yes maybe so and then I think maybe it's not. The top of my ankle bone where it meets your foot hurts really bad and when I flex it back and forth it pops. My hands hurt on the palm below my thumb. I go and do to try and take my mind off of it but it wakes me up at night too, so I don't ever sleep all night despite taking an ambien. I just feel like I want to cut my hands and feet off for relief. Like pulling a tooth out...oh and my toes are always ice cold ( but they don't hurt) it's the ankle bone.
I read about neuropathy and it doesn't feel like bees stinging me. Tingly and numb.....it hurts and it's driving me crazy. I don't know how people do continuous treatment because if I did reoccur I just think this isn't the life I want. And I know every ones different, and I admire everyone that's tough and can keep doing it, and I don't know how you do.
Today, I am just tired in every way. And I think has anyone had this pain like this ?
As usual thanks for letting me vent.....
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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02-05-2014, 01:09 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Pain is exhausting and a crying again. Help...
Hi Linn,
Sorry for all your pain but I'm fairly certain this is not neoropathy but something else, my friend had similar symptoms and in her case it was Reynards disease, I hope you get answers soon and would definately seek another opinion.
__________________
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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02-05-2014, 02:11 PM
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#3
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Pain is exhausting and a crying again. Help...
nope.. doesn't sound like neuropathy or mets pain to me.. Good to hear you're getting a second opinion. Hope you get relief soon.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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02-05-2014, 03:10 PM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Pain is exhausting and a crying again. Help...
Lynn,
What you've described sounds like the problem hubby's youngest niece has. You
might want to get it checked out by a specialist. (And hopefully your appointment on February 20th will shed some light.) She had gone to several and finally ruled out bunch scary stuff and is now doing fine with pain medication.
Hope you will feel better soon.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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02-05-2014, 03:59 PM
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#5
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Senior Member
Join Date: Dec 2012
Location: Attica, IN
Posts: 371
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Re: Pain is exhausting and a crying again. Help...
I never had this until treatment for cancer, and I have struggled with it for several months now. I talked about it on this board.....and if you read back they did echogram?
I have noticed going out in the cold weather makes it worse. So back a circulation problem but isn't that what neuropathy pretty much is....I even tried to be preventative and where two pairs of socks.
I think will I ever feel normal or before cancer again?
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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02-05-2014, 05:38 PM
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#6
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Pain is exhausting and a crying again. Help...
Chrys,
Go see an acupuncturist. I swear by them. I've had pain 10/10 after taking pain meds, and the acupuncture treatments nipped it in the bud.
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02-05-2014, 08:06 PM
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#7
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Senior Member
Join Date: Dec 2012
Location: Attica, IN
Posts: 371
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Re: Pain is exhausting and a crying again. Help...
Really, I will do that! and at one time years ago a chiropractor's office did that. Is that the type of place you go still? I never did it, but I saw in one of his rooms he did.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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02-05-2014, 09:51 PM
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#8
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Pain is exhausting and a crying again. Help...
Sorry to hear you are having so much pain. I started acupuncture a couple months ago and I'm having awesome results with pain management! It can't hurt to try-that was my attitude and I'm so glad at did!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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02-05-2014, 10:58 PM
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#9
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Senior Member
Join Date: Jun 2010
Location: TN
Posts: 83
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Re: Pain is exhausting and a crying again. Help...
linn,
I'm sorry you're in so much pain. My daughter has Reynaud's and it does have similar symptoms to what you're experiencing. I can relate to the feeling that every ache and pain is scary as it immediately triggers dark thoughts.
Dr. Kathy Miller is my doctor. As a matter of fact, I have my 6-month appointment tomorrow afternoon. I'm in the Indy area (although my info. still says TN.) If you would like to grab a cup of coffee when you're here on the 20th, just PM me. I'd be happy to meet a fellow traveler.
__________________
DX 5/17/10 IDC & DCIS
BMX 6/3/10-Stage 1, 0/2 nodes
ER+/PR-, Her2+
Chemo 7/8/10-10/21/10
FEC X 3, T X 3, Herceptin weekly for 9wks
Start Arimidex for 5 yrs-11/22/10
12/16/10 NED!!!!!
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02-06-2014, 12:58 AM
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#10
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Pain is exhausting and a crying again. Help...
Linn, sometimes other things happen to us that are not necessarily cancer related. Which I think is a bum deal! Anyway, as others said, these symptoms could be Reynauds
But if it's neuropathy, you need to give the Neutontin more time
Sounds like a second opinion is in order
Meanwhile, keep the faith
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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02-06-2014, 06:25 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Pain is exhausting and a crying again. Help...
Well, you did just start Arimidex and that causes alot of joint pain for some people. You can test the theory by calling your onc and stop for a few days, see if it goes away. If it does, ask your onc to try another AI such as Aromosin or Femara. Its good you're getting it checked out as it could be something else but it may be this.
__________________
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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02-06-2014, 08:41 AM
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#12
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Pain is exhausting and a crying again. Help...
Hello Beauty,
I jumped into your skin for a moment. Concerning pain, I think the most likely culprit is neuropathy. Acupuncture works for many. I'd give it a go. I suffer from ever-present neuropathy, and when it flares up, I check my sugar intake. Bingo! Usually, I have slipped in that area.
I also would recommend doing something extremely personally fulfilling to take the edge off. Take an art class, yoga class, organize a party for a special occasion you make up. Feeling extremely tired is normal among us, and you've also have additional challenges, so I'd add a consult with a psychologist, as challenges breed fatigue. Perhaps he/she can act as a conduit to help you sort your challenges out.
Force a smile, exercise and get that second opinion.
A cancer diagnosis really warps our sense of selves, our futures and our overall well-being. I think you are on the right track.
Warmly
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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02-07-2014, 06:17 AM
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#13
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Senior Member
Join Date: Jul 2013
Posts: 260
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Re: Pain is exhausting and a crying again. Help...
Hi Linn,
You could have multiple things going on here. I'm sorry your are having so much pain. Usually neuropathy should have at least some numbness associated with it. It may feel cold and can be painful, especially if anything is resting on your skin.
Nerve damage from nerve compression (eg carpal tunnel syndrome in your wrist, or nerve compression in your foot) can cause pain. It is not uncommon.
Raynaud's causes pain and cold and burning feelings, with changes in skin color and is often episodic. The cold can really stir this up.
Diagnosis is based on the history and examination by your doctor and sometimes nerve studies. It can be hard if multiple things are happening at once. Try to note if there is any thing that makes the symptoms worse or temporarily better - it can be a clue to the cause.
The ankle could be a secondary problem - possibly joint damage or arthritis. It's easy to damage your joints if you've got neuropathy.
I agree that acupuncture may be helpful and that Neurontin may take awhile to kick in. I'm attaching a link to Raynaud's syndrome in case helps. http://www.nhlbi.nih.gov/health/heal...opics/raynaud/
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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02-07-2014, 02:36 PM
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#14
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Pain is exhausting and a crying again. Help...
Hi,
A friend on mine was on tamoxifen for 5 years and said it was worse the remedy than the possibility of a recurrence,
But she did it. Then seven years later, she found she had developed cancer this time in her other breast. This time around and because of her age she opted for a double mastectomy, which in the first place her doctor had recommended, but husband did not want to. Argh...
Present time, she's doing fabulous. Just thought I would share my friend's story with you. Hang in there.
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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02-08-2014, 12:43 AM
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#15
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Senior Member
Join Date: Dec 2012
Location: Attica, IN
Posts: 371
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Re: Pain is exhausting and a crying again. Help...
I found out today that my blood work on b12 was a little lows but b6 was okay so a multivitamin to take, the biggest deal is I am very vitamin D deficient they want me at 30,and I am at 14. So he is going to call me in a high powered vitamin D pill to take 1 a week for 12 weeks,,,,,I guess that effects your joints/bones with pain. So I hope that's the kicker and helps me. I already have taken a multivitamin, omegaplex vitamin, alpha lipoic acid, and probiotics. So was surprised but maybe it could help. I hope so. ��
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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02-08-2014, 08:41 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Pain is exhausting and a crying again. Help...
Exposure to sunlight could help with your vitamin D level, and it personally helps my emotional health. Taking a walk in the sunshine, even on a cold day could give you a boost.
__________________
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!
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02-08-2014, 09:04 PM
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#17
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Member
Join Date: Mar 2012
Posts: 18
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Re: Pain is exhausting and a crying again. Help...
I have and had the same pain, so far with all 3 AI. My mom and I researched and found that it AI Sid effects and I have added Turmric to my green smoothies and borage oil, it has subsided and most days at least tolerable. The only other options are to come off of the AI or live on pain meds.... no thank you onc. Hang in there
__________________
Diagnosis: Nov 4, 2011
IDC 5+cm tumor Left Breast
Stage: IIB/III (3 SN+, 3 LN+)
Her2+++
Mastectomy Nov 22, 2011
Dec 15 2011 Begin FEC x 4
Mar 8,2012 1st of 12 weekly Taxol/Herceptin
Rad's 36 zaps July 1st-August 16, 2013
Herceptin April 8 2012-March 1st 2013
Not recommended for Reconstruction April 24, 2103
Found 6 Tumors in Ovary and Uterus=Hysterectomy March 8, 2013
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