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02-19-2010, 06:00 AM
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#1
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Senior Member
Join Date: Apr 2008
Posts: 69
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Hair Issues
At the risk of sounding rather silly, I have a question about my hair. After completing the chemo regimen detailed in my profile my hair has still not fully returned. I lost it all during chemo. Ithas come back very thin and wispy. I think is is thinning more now. I've been off chemo for about a year and off Herceptin since May. Any suggestions folks? Thanks
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)
Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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02-19-2010, 10:51 AM
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#2
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Re: Hair Issues
wow it didn't take my hair that long to come back in. are you taking anything else that might be causing it?
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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02-19-2010, 10:56 AM
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#3
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Senior Member
Join Date: Apr 2008
Posts: 69
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Re: Hair Issues
Juanita,
I'm not taking anything other than some herbal suuplements--fish oil, olive oil and Vitamin D.
Brenda
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)
Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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02-19-2010, 11:00 AM
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#4
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Re: Hair Issues
hopefully one of the others will have a suggestion when they see this. sorry i can't help! good luck!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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02-19-2010, 12:02 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Hair Issues
My hair was very slow to return all over. I worried because female hair loss runs in my family (after menopause) and I was young and firmly in chemopause and had a scheduled ooph to boot.
It did end up coming back okay. It is not as thick as before but it covers my head nicely with no bald or very thin areas. I keep it on the shorter side now cuz I think it would look too straggly if long.
Does menopausal female hair loss run in your family? It might and the chemo hair loss may have accelerated the event. See a dermatologist and see if a Rogaine type product may help you out. It helps my mom alot (a bc survivor who did not need chemo but is on Arimidex which would make her postmenopausal hair loss worse - if you saw her after a Rogaine type product you'd never know there were some bare spots).
I am just thinking out loud here but you might have something else going on.
__________________
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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02-19-2010, 12:18 PM
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#6
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: Hair Issues
Brenda,
You are not alone. There was an abstract and a poster on this subject presented at the San Antonio Breast Conference in December 2009: http://her2support.org/vbulletin/sho...eferrerid=1173
Hopeful |
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02-19-2010, 10:41 PM
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#7
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Hair Issues
Brenda,
Ever since my first breast cancer surgery and chemo in 2003, I've been wearing a wig in the 'professional' or 'formal' setting. My hair has thined even more after another 6 doses of chemo in 2007. Part of the reason could be genetic - my father's hair has been very, very thin as far back as I could remember (I was born when he was 45)
I've got many compliment on my hair - people who haven't seen me for a while would say very nice thing about my 'hair'. I would then let my friends know that it is a wig. [Probably should follow my late Mother-in-law's advice: "Just say 'Thank you.'"
I use a very thin, small silk hankerchief inside of the wig. Silk absorbs oil and moisture very well and I have very, very oily skin.
__________________
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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02-20-2010, 10:36 AM
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#8
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Hair Issues
Hi Brenda,
I agree with Becky that you should see a dermatologist and, preferably, one that specializes in hair loss. Many women normally experience hair thinning as they get older and, as Becky said, if menopausal hair loss runs in your family you may experience more thinning than "typical". Rogaine type products can be very successful for women so I would not delay getting a consultation with a dermatologist as well as letting your internist and oncologist know you are doing that.
Best wishes,
Karen
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02-20-2010, 12:16 PM
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#9
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Hair Issues
Brenda,
I feel your pain. My hair grew in very fine, but good coverage in the back. The very front and temples the hair was sparse. Used to having extremely thick hair, it distressed me.
In the last few months the curls all grew out and it was very straight and baby fine. I started Rogaine for women Christmas eve and I see all sorts of tiny fine hairs coming in on the side that was the thinnest. I just bought it off the shelf $35 for a 3 month supply.
It did seem that it got thinner too. I do know that hairs fall out before others replace them. Maybe thicker hairs are on the way!
I finished Taxotere 9/08 and it has taken a long time to get to where I feel more comfortable with my slowly thickening hair. A watched pot never boils, lol.
Good luck,
Elizabeth
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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02-20-2010, 01:09 PM
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#10
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Hair Issues
To Brenda and Elizabeth,
The products you can obtain from a dermatologist will generally be "stronger" than those you can obtain over the counter (particularly the women's over the counter products). Plus, some dermatologists may suggest that you be on more than one product (e.g., one to prevent further loss, another for new growth). Also, a dermatologist can make sure than you will not be given a product that might include hormones you should not have .
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02-21-2010, 03:44 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Re: Hair Issues
Big changes here, too. Used to have very thick naural curly hair. I would estimate that only 1/2 of the hair came back, and it is quite straight. So different than what I had been used to. Actually I don't mind the new look, as thick curyly hair can be hard to magage, too. It's just a big adjustment. There is one area in the back...maybe it is colic...but I try to keep that area covered (by combing) so there is not a crooked bare spot in that place!
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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02-22-2010, 06:30 AM
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#12
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Senior Member
Join Date: Apr 2008
Posts: 69
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Re: Hair Issues
Thanks Ladies, I appreciate all of your advice!
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)
Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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02-22-2010, 12:20 PM
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#13
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Hair Issues
mine is much thinner now. Just glad to have it! lol
__________________
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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02-22-2010, 02:25 PM
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#14
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Hair Issues
I posted "Chemotherapy Permanent Hair Loss" in the Her2group thread a number of months ago. You may want to search and read the replies. I have since connected with other women around the world who have experienced permanent hair loss after taking Taxotere. It is not common but Dr. Slamon confirmed for me that it does happen. If anyone from this site wants to connect with others with this problem, please visit http://www.aheadofourtime.org/. Although I am not happy about it, at least I know that it is permanent and can move on from there.
I sincerely hope you have a different long term outcome than me. |
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02-24-2010, 04:50 PM
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#15
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Hair Issues
I was at group accupunture yesterday and as usual the hair discussion started. One friend went to dermatology and she tried the men's strength minoxidil and had no luck. Another friend tried laser to stimulate hair growth on her scalp. She said the thinness wasn't chemo related.
Mine is growing in slightly with the Women's Rogaine. And I have a self-hypnosis that helps with image problems with "disfigurement". Both helped.
But I looked better with the wig, lol.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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02-24-2010, 11:55 PM
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#16
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Hair Issues
Perhaps try Nioxin Follicle Booster scalp treatment, twice a day it recommends... it has helped me grow mine back faster the 3 times I have had to, and now on Tykerb (which makes it very thin) it helps it come in just a little bit thicker.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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02-25-2010, 12:29 AM
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#17
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: Hair Issues
hot topic...my hair used to be soft curls. Now it's straight and thin. Didn't know it was another lovely Tykerb benefit. I'm going to try the scalp treatments and see if it gets me more hair  My eyebrows are also very thin.
__________________
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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