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Old 03-07-2015, 10:54 AM   #1
SoCalGal
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cancer is killing my spirit

I've been fighting depression for about a year or so. I don't take anti-'d's, historically they haven't worked for me. Instead, I force myself to forge ahead, stay focused on gratitude - keep my eye and my energy on what I DO HAVE, etc. I dance 2-3 nights a week, out for the evening, it is my escape into the world of social dancing. No one knows my history, I am just another person on the dance floor. It has been my savior, this space of happy music, body in motion.

My last few scans have not been great. BUT compared to others with stage 4 (which is how my doc views me, compared to others), I am doing well. Meanwhile, I feel more and more anxious, certain that this could be my last "healthy" year, meaning good quality of life...and now even that is questionable with my neck nerve problem.

I have been suffering with nerve pain from cervical c5-6. VERY DEBILITATING PAIN. Unrelated to cancer, or anything surgically fixable, this narrowing in my neck creates horrible nerve pain which remits in my arm/elbow and shoulder blade.

I'm supposed to have another epidural in just a couple of hours. Also very anxious about that, even though I had one a week ago, and have had then from time to time, it's like I just can't handle things any more - it's all too much for me to take. I have no strength - I am so tired.

I was supposed to add back in Avastin next week but found out that they have to hold it for two weeks following an epidural. Not even sure that it will work again on my lung mets, but wanted to at least try.

I am so tired of fighting everyday. I am beyond weary of this disease. It's been 8 years of stage four shit, but all together it's 19 years since I was first diagnosed. I am down, and tired and no one seems to understand this, least of all my (young adult) kids. It is so difficult to keep trying to re-create a life for myself.

I am just so weary of fighting this disease. I feel that, cell by cell, cancer is killing my spirit.
__________________
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka this better fu*king work
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Old 03-07-2015, 11:57 AM   #2
Donna H
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Re: cancer is killing my spirit

OMG, SoCalGal my heart breaks for you. I am close to my one year DX (this Friday) so I have no real idea what you have been going thru. I am sure you are sick of hearing "Be strong" or "Stay positive". People who have not gone thru this journey have no idea what it does to a person - both physically and mentally. I say laugh when you can and cry when you need to. Please know that everyone on this site is thinking good thoughts for you and sending you strength and encouragement. You are stronger than you realize. All my best -
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Old 03-07-2015, 01:50 PM   #3
Ceesun
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Re: cancer is killing my spirit

Flori, Please hold on and hang in there. You have so much spunk and spirit...I just love that. I know the road has been long and I guess as we age ( I suspect I am older than you...darn!) other non related to cancer issues set in to deal with, for me its the knee, but that is even harder when cancer is in the forefront of our lives. Give yourself a little time to be down and then try to kick it in gear. If you need some meds to take the edge off, go for it...you deserve to take care of mental/emotional self, too. I have been stage four for almost nine years now and especially today after the Adriana news I am in a total funk. But when I look around at my friends, even, there are people worse off dealing with illness. You may just be one of those outliers...and continue to do well! Best wishes always SoCal Gal! Keep those dancing shoes on and as you say...cuck fancer!! Hugs, Cathy aka Cee to Adriana and Ceese to Pink Girl....
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Old 03-07-2015, 02:05 PM   #4
jaykay
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Re: cancer is killing my spirit

Oh, Flori - I don't know what to say to you other than you are a shining light in this site of wonderfully strong women.

Re: your neck. Have you tried acupuncture? Worked better for my back than epidurals.

Thinking of you

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-07-2015, 02:55 PM   #5
tricia keegan
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Re: cancer is killing my spirit

Flori I'm not surprised you feel down and this is normal I think so don't feel bad, go with it and do something nice for you and know that tomorrow is another day and you'll be back fighting again although I'm sorry you have to. ((((hugs))))
__________________
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 03-07-2015, 03:32 PM   #6
europa
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Re: cancer is killing my spirit

Flori, I am so sorry this is becoming a struggle for you. Have you ever considered therapy? It worked well for me and still works well for me. I'm going through something right now related to Cancer and it has been too much to handle on my own, so I see a therapist once every two weeks and it really has helped
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy

www.mychemobag.org
www.facebook.com/mychemobag

7 YEARS NED
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Old 03-07-2015, 06:18 PM   #7
DianaMK
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Posts: 62
Re: cancer is killing my spirit

I'm sorry you are going thru this. You are an inspiration to all of us. You have gone thru so much. Living with cancer is bad enough but to have nerve pain too completely sucks. I pray you get some relief. Hang in there!
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 03-07-2015, 08:29 PM   #8
Pamelamary
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Re: cancer is killing my spirit

Flori, so sorry to hear you are feeling down - we are all dancing beside you!
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
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Old 03-07-2015, 10:32 PM   #9
StephN
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Re: cancer is killing my spirit

SoCalGal -
You are a wonder! I never know when my last healthy year will come and go either. I wish I had the time and energy to dance as much as you do. I do find that even certain music can soothe me when I am feeling on the ragged edge.
Movement creates energy. Stop and we drop.

Very sorry to hear about your neck pain. Pain can be so hard to deal with if it is ongoing and nothing in sight to help it. Keep looking for a way to get some relief. I am having a problem with advancing neuropathy of my feet which is precluding me from even long walks with my hubby. I went to a specialist and I am going to try a different class of drug that is less expensive.

Feel free to vent all you need to. We hear you and hug you!
__________________
"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 03-07-2015, 10:37 PM   #10
sassy
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Re: cancer is killing my spirit

Flori,

Please know that even though your children and probably lots of others around you don't understand the weight of this disease (how can those who haven't walked this path understand?), WE understand and you are not alone.

Maybe antidepressants might be worth a try again. They have helped me through rough patches on more than one occasion. Perhaps one you have not tried before would be effective.

You are one of the strongest survivors I know-you kick butt.

Keep on kicking.

Holding you in my thoughts and prayers and sending positive thoughts.
__________________
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
13 YEARS NED!
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Old 03-07-2015, 10:49 PM   #11
waterdreamer
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Location: Thousand Oaks, California.
Posts: 199
Re: cancer is killing my spirit

Have you thought about getting a portable far infrared sauna, it will help detox your body, and weaken the cancer. It should also relieve your pain. I just purchased the Clearlight Curve - I will let you know how it goes. It has virtually no EMF's and I have always found heat to be helpful for bone pain. I am not doing any chemo. I will do radiation if I get anymore brain mets, but I am juicing, supplementing and eating healthy. Hang in there, you have come this far - what do you want for yourself? What are your dreams? Dreams are so important, dare to dream.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 03-07-2015, 11:13 PM   #12
Jackie07
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Location: "Love never fails."
Posts: 5,801
Re: cancer is killing my spirit

I hear you, Flori.

I've been having neck issues as well. They are caused by the stupid brain tumors (Central Neurocytomas - unrelated to BC) near the thalamus. I have to be careful when I bend or turn my neck ... Those doctors never informed me about the little ones near the Thalamus (We had GKRS the three bigger ones in the vast space above it in 2001.)

No, I haven't been able to dance for ages ... (Nor singing - it was 15 years ago when I last sang in the choir; 24 years ago when I did a solo part in one of the church concerts.)

But I do enjoy chatting on Facebook with my family/friends and online communicating with my fellow cancer fighters.

Gripe whenever you feel like it. We understand. We are on the same boat.
__________________
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

"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

Last edited by Jackie07; 03-07-2015 at 11:20 PM..
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Old 03-07-2015, 11:51 PM   #13
yanyan
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Posts: 403
Re: cancer is killing my spirit

I too hear you Flori. Lucky enough that I'm still here after 4 years and I know no days has been easy dealing with recurrence. I feel your frustration, depression anger and moments of peace and joy when we are in remission even if just one day - one day when we don't have to think of this. Fern has given some good advice on healthy diet and lifestyle which we all can benefit from. And I like you going out to dance- do something that makes you happy! Lots of hugs to you !!
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 03-08-2015, 02:08 AM   #14
michka
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Re: cancer is killing my spirit

Dear Flori, I understand how you feel. You certainly didn't need this neck pain. Pain knocks anybody down. I hope you can find a solution because it is so important that you continue to dance. Hugs.
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 03-08-2015, 07:01 AM   #15
rhondalea
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Re: cancer is killing my spirit

I'm so sorry to hear about the issues you're experiencing, Flori. It sounds as if it's more the nerve pain than the cancer that's killing your spirit. Nothing will make a person lose hope faster than unrelenting pain.

I have never found a benefit from antidepressants (although I've only tried two that were prescribed temporarily to relieve hypothyroid-induced depression until my blood levels came up), but there are other options. You might want to ask about Deplin. For some, it can be amazing. It is a medical food, and it does not work the same way as antidepressants do. Another option might be a mild stimulant at a low dose, because that will address the neurotransmitter (norepinephrine) that SSRIs don't touch.

But the pain is what needs to be addressed, so it might be best to find a doctor who specializes in pain mitigation. This link is to the US page of the World Institute of Pain, but you can access all their information from links at the top of the page. I don't see anything local to you, but if you contact them, they should be able to help you find a local practitioner or center:

http://www.worldinstituteofpain.org/...ction-USA.html

And again, I'm just so sorry that you're having to deal with this, but I have hope that if you are able to control the nerve pain, you will have reason to be more optimistic.

rl
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 03-08-2015, 10:23 AM   #16
SoCalGal
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Re: cancer is killing my spirit

Rhondalea, you're right -the pain IS messing me up, more than the cancer in the sense that the cancer is a silent killer right now.

I got the second epidural yesterday, he actually said that there are bony spurs that could be helped with surgery if it comes to that. Although he was very optimistic that the epidural will calm the nerve and I'll have a good result. He is an anesthesiologist, did the procedure a different way than the doc last week, and went into another area as well c5-6 and c6,7. At least I have a plan to be followed so I am feeling less like disposable garbage. This guy is a gem, so finding a good doctor (rather than the head of cedars pain management clinic, who is perhaps a good dr but that office is impossible, they are bitchy and it takes two days to get a callback) also helped with my high anxiety.

Im going to see a shrink to support me for awhile - even though I hate to spend the money on that, for now I don't thnk I have a choice.

I felt so much better just from posting yesterday.

Reading all your words does give me such valuable support, plus ideas to consider.

As much as I hate to add in more drugs to my daily swallow, I am going to revisit options with my doc if only for the short term.

Meanwhile as a friend suggested, aleve can be good for a few days since I am on Avastin hold for two more weeks. (Although for some, naproxen can be a depressant). I've not been in this dark of a depression, my sadness is usually more grief related, comes and goes, something I live with. And my method of coping usually is very action oriented. I am simply exhausted and overwhelmed, isolated and frightened. These feelings are so dark, the stay in bed, I-am-so-tired-kind. Big departure from my usual "girl with a plan A,B and often plan C". A girl who created and facilitates art expression programs to help others on their cancer journey. Maybe it's my time to float in darkness for awhile, maybe I am just sick of this journey or maybe this will allow me to better understand others in this place. Who knows?

Thank you all for your kindness and support, including those who reached out via PM. I AM FILLED WITH GRATITUDE FROM YOUR SUPPORT. (And thank you to the Druthers for creating and continuing this board).

"Sticks and stones can break your bones but words cannot harm you" is NOT true. WORDS ARE SO POWERFUL. Thank you all for yours.
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Old 03-08-2015, 11:41 AM   #17
BonnieR
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Re: cancer is killing my spirit

Our dear Flori! It sounds as though you are getting back on top of things and feeling more hopeful. Having a respite from pain is everything! I'm dealing with spine and hip pain and finally got relief in recent days via PT. I cannot believe what a difference it made in my QOL and outlook
I like Aleve a lot too!
I think having someone to talk to is a wonderful thing and can be real support. Perhaps help you find a suitable antidepressant
Please try to remember that this is transient and you'll find the right combination
As the saying goes, when you're going thru hell, keep going
Keep the faith. You, of all people, do that on a daily basis
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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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Old 03-08-2015, 02:05 PM   #18
Lani
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Re: cancer is killing my spirit

be a bit careful with assuming it is ok to take aleve if you are off avastin.

THe effect NSAIDs has on platelets which promotes bleeding is prolonged (which is why they ask one to d/c nsaids early prior to surgery)

They may want you off them 7-10 days before surgery, or they may not want you to risk additional chance of bleeding at all

As always, best to ask your doctor

Here are a link about a non medication treatment for depression--will never get a clinical trial on this as there is no $$$$ in it:

Chronotherapy for Depression: Rapid, Large, Stable Effect
www.medscape.com/viewarticle/840191
Medscape
Feb 23, 2015 - A chronotherapeutic intervention combining sleep deprivation (wake therapy), bright-light therapy, and sleep scheduling may have lasting ...
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Old 03-08-2015, 02:35 PM   #19
BonnieR
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Re: cancer is killing my spirit

Lani, thanks for pointing that out about Aleve. I'm grateful for the really knowledgable like you who share with us!
Keep the faith
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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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Old 03-08-2015, 05:07 PM   #20
caya
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Re: cancer is killing my spirit

Sorry to read about your pains issues and depression too Flori girl! You are only human, of course this el crappo disease is going to take its toll on you, especially after 19 frigging years (and 8 of them at stage 4).

I also hope you consider revisiting taking some kind of antidepressant, something might work this time. I hope so, for your sake.

Bitch and cry and moan as much as you want - that's what we are here for. It ain't called the HER2 Support Group for nothing...

xoxo

all the best
caya
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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
12 Years NED!!
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