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Old 06-14-2017, 05:28 PM   #21
phil
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Posts: 393
Re: Good and Bad News

SOOOOOO Good to hear from you - lots of good advice here . Fern's drug co. Puma , is giving more compassionate use than most ( all ? ) small co.'s for neratinib , and deserves our Stage IV praise. Perhaps they would like to bring more compassion to Europe ...Cascadian that makes tucatinib doesn't seem as Stage IV friendly , even though they use us for the testing . I believe the times are changing - more compassion is coming . ask for it .
I am sending Blessings your way
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Old 06-26-2017, 09:25 PM   #22
StephN
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Unhappy Re: Good and Bad News

Amy, thanks for mentioning me. I did not have nearly the complicated decision facing our dear Michka. Mine was a simple "let's get them with gamma knife," and we did.

Michka and I met in Paris in 2011 for lunch. Michka, you have been an amazing advocate and crusader for your own health through all of the intervening years. I believe you will figure this one out as well!
__________________
"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 06-27-2017, 11:50 AM   #23
Mtngrl
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Re: Good and Bad News

Steph--

Thank you for being so gracious about me bandying your name about without really knowing what I was talking about. You're a class act. And you're a wonderful support group member.

Love, prayers, and blessings for us all, especially Michka.

Amy
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Old 06-27-2017, 02:32 PM   #24
StephN
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Re: Good and Bad News

Amy, I know you are here with good intentions like the rest of us! And if my longevity is helpful to others, I will stay as long as possible. I guess I was really saying that other than longevity, my case and Michka's don't have a lot in common as her cancer is more chameleon-like than mine.You and she have that in common - trying to have a next step or alternatives ahead of the game.

Lani has come up with some cutting edge info, which I hope will yield a path for you, dear Michka.
__________________
"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 06-28-2017, 05:46 PM   #25
Lani
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Question Re: Good and Bad News

It has been almost 2 weeks since Michka posted. Anyone know if she is
ok?

Lani
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Old 06-29-2017, 06:52 AM   #26
Hopeful
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Re: Good and Bad News

Lani,

I checked in the Members section of the board, and it says her last visit to the site was June 26, 2017, so she has been here, just not posting.

Hopeful
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Old 06-29-2017, 09:05 AM   #27
Lani
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Re: Good and Bad News

thanks for checking!
Lani
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Old 06-29-2017, 07:15 PM   #28
Mtngrl
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Re: Good and Bad News

Prayers and warm wishes for our dear friend Michka.

Amy
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Old 07-01-2017, 10:19 AM   #29
Laurel
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Re: Good and Bad News

Ditto Amy, Lani and Hopeful!!!

Praying you are conserving strength for your newest battle protocol and will stop by soon to let us know how you are doing! We hold you close in our hearts, dear Michka!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 07-09-2017, 08:40 PM   #30
SoCalGal
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Posts: 1,607
Re: Good and Bad News

Michka,
Sending love. Prayers, strength.
Keep fighting.
xo xo xo
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 07-19-2017, 02:27 AM   #31
Paula O
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Posts: 954
Re: Good and Bad News

Michka, We are rooting for you. I'm sorry you are going through this. I wish you weren't. If you were my neighbor I would be knocking on your door today with a bouquet from my flower garden, dinner for your family, and an offer to clean your house or to do something you need done. I bet lots of people here wish they were there with you to help you in practical ways during this difficult time. Please know our hearts are with you and we are thinking of you. How is your family doing through all this rough stuff? If you feel like talking we're here for ya. I am lifting you in prayer right now. (((Hugs))),Paula
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Old 11-27-2017, 12:48 PM   #32
StephN
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Location: Misty woods of WA State
Posts: 4,128
Question Re: Good and Bad News

Hello everyone,

I am thinking a lot about Michka. Has anyone heard from her? Maybe I have missed a post somewhere.

Sending strong positive wishes and hugs for healing to you, Michka.
__________________
"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 11-28-2017, 07:12 AM   #33
Hopeful
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Re: Good and Bad News

Steph,

If you go to the Members List portion of the site, you can look up any member and the date they last visited the site (which is not the same as posting, just means the person logged in). Her last visit to this site was August 18th.

Hopeful
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Old 11-29-2017, 06:54 AM   #34
jra40
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Location: Pittsburgh, PA.
Posts: 260
Re: Good and Bad News

Thinking of you Michka, sending healing prayers and hugs your way
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 12-03-2017, 04:01 PM   #35
Laurel
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Posts: 2,005
Re: Good and Bad News

Someone here on the site was in contact with Michka. I cannot recall now whom it was. Andi BB?

Michka, we are thinking of you and praying you are doing well. Please pop in to let us know how you are.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 12-06-2017, 11:14 PM   #36
StephN
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Location: Misty woods of WA State
Posts: 4,128
Re: Good and Bad News

Hi Laurel,

Our own AndiBB has been MIA herself. Heart issues I understand. Hope she will recover and participate here when she is able.

Michka has been reached out to, but no reply that I know about. Just have to keep hoping she is working her latest problem and will reappear here.
__________________
"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 06-12-2018, 08:18 AM   #37
Ais4Abbott
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Posts: 15
Re: Good and Bad News

Hi again Waterdreamer, Thank you for posting on one of my old posts. I found your last post. I hope you are still with us. Did you ever try the cannabis oil? Did you ever try the Rick Simpson cannabis oil directions of using 1 gram of cannabis oil a day? I live in Texas so I don't know anyone that has. He made it sound very real. He made it sound like it could bring one back from the brink of death. It sounds like you needed something like that. I just hope more than anything that you are ok, though. Love you. I personally would have tried a good strong THC, whole plant oil if I lived in CA. However, I was in Los Angeles on January 2nd 2018 and the store I went into, made the choices look harder. It was very crowded that day, and it was closing time, I was going home that week, and wasn't going to take anything like that across the border.
__________________
2007 DX DCIS ER-/PR-/Her2+
2007 3x lumpectomy, radiation
2010 DX DCIS ER-/PR-/Her2+
Mastectomy
Tram Flap - 1) wish I could delete that.
2)Interested if anyone did this, and then got implants. 3)Ruined stomach muscle. (Appreciate info about fixing this).
Recommend New Orleans instead of MD Anderson for all surgery.
12/17/2010 TCH 6x/3wks Herceptin 3/wks til 11/17/11.
12/23/2010 Lost Hair - 10/5/2011 Wig free - 4/14/2013 Long Hair again.
Severe nail detachment-(Past) 10/2011 - toenails still trying to grow back. 4/14/2013 - Normal toenails & fingernails.
Severe neuropathy (upper thighs/upper arms) - taser sensation - (in the past), light touch finger or toes = burning. Sock free (still). Can bend knees and ankles, now. Dr. stopped Docetaxel after 5th, due to possible permanent nerve damage. (now in hands/fingers, feet/toes - pain, interested in help). 4/14/2013 - Neuropathy much less. Nerve damage is permanent in fingers & toes, hands & feet. Toekini ($10) from CVS pharmacy works great for my CIPN - feet at night. Nothing can touch my toes without burning me. I can not braid hair - fingertips do not work right.
Severe constipation - (made worse by drinking small swallow of water with Senecot instead of a full glass of water - caused concrete type blockage of bowels - drink lots of water with it!)-(Past)
Severe Reflux - (great medicine available for this) - Carafate (past)
4/14/2013 Much happier now. Smiling a lot. Started working in the yard again, but must wear toeless sandals. Blessed. Best wishes & Blessings to you all. Has anyone had success with Rick Simpson Oil in curing HER2? Very interested in hearing details. I live in Texas and do not know anyone that has tried it. We can not use it here.
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Old 06-16-2018, 02:05 PM   #38
StephN
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Location: Misty woods of WA State
Posts: 4,128
Re: Good and Bad News

Bad news, Abbott.

Both our Michka and Waterdreamer have crossed the bridge from this life.

Good luck with searching out further info on cannabis.
__________________
"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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