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Old 08-15-2016, 11:56 AM   #1
michka
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10 years and in trouble

Hi All. I was hoping to post a positive message for my 10th year on the cancer road but the report of my last liver MRI is not too good.
End of May, a MRI showed that the tumors in the liver had shrunk by 40% or for the smallest, not visible anymore after less than 2 months of returning on Kadcyla. But last week the MRI showed new tumors in the liver while the previous ones were almost all gone. And there may be a tumor on the L3 vertebra.
So the onc said, either Kadcyla stopped working, either you have 2 kinds of tumors and in order to know, a biopsy has to be done.
At this stage, he suggested nothing else and I must admit that I am not back on the boxing ring yet. My head is empty.
It is very very difficult if not impossible to get Pertuzumab is you are not using it as a first line metastatic treatment in France even if it did not exist 5 years ago. So I have to figure that out. I know I will find a way but it is really a stupid situation.

What do you think about some tumors growing and others disappearing at the same time in the same organ? Any hints?

Here is where I need your help: I will not escape a biopsy this time. But what should I ask for apart from HER2 or not, ER, PR? Where in the US do they do the best screening so I can contact them and understand what slides they need. If I do not ask and jump up and down to get exactly what I want analyzed, and slides to be exported they will do the minimum here. I would like to know if it would be interesting to get into a immunotherapy trial if I have the right characteristics for example.

I am sorry if this post is not very clear or cheery. Give me a few days to find my plan and I will be better.
....and please forgive my English. I have the feeling tonight that I cannot find the right words.

I still wanted to tell you all on this board that if I am still alive today after 10 years it is because two wonderful persons, Christine and Joe, decided to share knowledge but also love. Of course, we lost too many beautiful men and ladies and I remember their names, their pictures, their posts and mails and it hurts, but for the newcomers you have to know that most of the 10 year members are doing very very well, going on with their lives and that the treatments of today are so much better than the old ones. Last but not least: some members who are doing well even after being metastatic are still helping others on this board years after when they could just forget us. They helped me stand up and walk on the long road and still are. I love them.
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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 08-15-2016, 12:17 PM   #2
Carol Ann
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Re: 10 years and in trouble

Hi Michka,

I don't have any advice but just wanted you to know I am praying for you and I hope you find a new plan as soon as possible.

I believe the biggest and best cancer treatment centers here in the US are MD Andersen in Texas, Memorial Sloane Kettering in NYC, Johns Hopkins in Maryland ... and I know there is a large center in Seattle, WA but I do not know the name.

And your English is superb, always!

I am sure someone with more knowledge than I have will post soon!

Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-15-2016, 12:39 PM   #3
tricia keegan
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Re: 10 years and in trouble

I'm sorry to read your news Michka and wish I could help but I can only send my love and good wishes and know you'll get the advice you're looking for here and be ready to fight again as you always have. Your English is perfect btw! xx
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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 08-16-2016, 12:25 AM   #4
Pamelamary
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Re: 10 years and in trouble

Michka, I am so sorry to hear this. You have been one of those long term survivors who have given us hope over the years. I have no expert knowledge, but maybe you could get genetic testing done as well? We in Australia sometimes get this done in the U.S, but I am sure others will have more specific advice. I would also suggest at least one second opinion - sometimes a fresh view is needed.
Wishing you strength and hope..... Pam
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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.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 08-16-2016, 04:37 AM   #5
Mtngrl
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Re: 10 years and in trouble

Dear Michka,

You express yourself in English beautifully! I'm so sorry you're facing this.

I don't know what to make of new tumors growing in the same organ where old ones are shrinking. It doesn't make sense, does it? I've had that happen in my lungs, with some getting better and some staying the same or getting worse.

My oncologist here in Denver suggested I get a blood test from a company called Guardant. (http://www.guardanthealth.com/). The test finds circulating tumor DNA and identifies "amplifications" and mutations. The information we got back was interesting, but nothing we could act on at the moment. Of course it found the HER-2 amplification. I also have one or two others, plus one or two mutations. There are drugs in Phase 1 clinical trials for at least one of the mutations (PK-53). My oncologist said if they can figure that one out it will be a cure (and most cancers have PK-53).

There is a new drug similar to Tykerb being developed. There is also a new form of Anthracycline.

Others on the board have gotten good results from adding an old fashioned chemo drug to Herceptin. Once you get your biopsy results, you and your team can come up with a plan.

Thank you for being you, for lighting the path for others with stage IV. And it was so kind and thoughtful of you to emphasize that many 10 year survivors are doing well. I appreciate you!
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Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-16-2016, 07:38 AM   #6
jra40
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Re: 10 years and in trouble

I am so sorry to read your news Michka. You have been a long time warrior on this board and I am praying you will find a new treatment path to get you back to NED! I have no advice but just wanted you to know that I am thinking of you and hoping you find the resources you need.

Hugs! Jessica
__________________
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 08-17-2016, 09:57 AM   #7
SoCalGal
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Re: 10 years and in trouble

Hi Michka,
Sorry that you are going through this difficult news, hopefully once you catch your breath you will be able to continue to FIGHT for what you need!! I found this online, if you go to the link, there are links in the article to phone numbers and names of the researchers. This is a good place to contact, have a phone consult, and find out about sending your tissue there as well. Let me know how else I can help. xo xo Flori

https://www.mskcc.org/blog/powerful-...0-msk-patients

Summary (MEMORIAL SLOANE KETTERING)
MSK doctors have been using a powerful genetic sequencing test called MSK-IMPACT to analyze the tumor DNA of patients to learn about their cancer. The test allows doctors to detect mutations and other genetic changes present in tumors — information that can guide treatment choices and, in some cases, identify patients who are candidates for a cancer clinical trial. Recently pathologists at MSK reached a major milestone when they sequenced a tumor from the 10,000th patient.



These are other online MBC (metastatic breast cancer) groups, you might be able to post a question and see what comes back, or research what is already posted:

MBCproject Working Group

https://www.facebook.com/MetastaticBreastCancerNetwork/
__________________
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 08-17-2016, 05:17 PM   #8
caya
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Re: 10 years and in trouble

Bonjour cher Michka,

I can only offer my support to you, I hope you find the answers you need to keep fighting.

Your English est tres bonne!

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 08-18-2016, 08:10 AM   #9
bluequest
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Re: 10 years and in trouble

Hi Mischka,
I am treated for metastats in liver and have had 8 treatments of Docetaxel/Pertuzumab/Herceptin and just 6 weeks ago went to only Pertuzumab/Herceptin.
I am from the Netherlands and know that my onc and the Clinic in Apeldoorn are great with repect to Her2neu patients. Maybe Holland is an option for you to do 'business'. It is a lot closer. Also we have the ALV-clinic in Amsterdam that do second opinions and such. Let me know if you need names and telephone-numbers. Keep strong!!
Kind regards,
Claudia
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Old 08-18-2016, 08:15 AM   #10
Lien
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Re: 10 years and in trouble

Hi Michka,

Sorry to hear you have some progression in your liver and perhaps spine. You might also want ti look into trials in the Netherlands, England and Germany. I can help you with the first and perhaps with Germany. Please send me a personal message if I can be of assistance, as I don't always read all the messages on this board and I'm leaving for a short holiday on Saturday.

I have a friend in the UK who might be able to research options for you. Her husband is a pathologist. Just let me know.

Love

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 08-18-2016, 02:55 PM   #11
agness
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Re: 10 years and in trouble

I'm very sorry for your progression news Mishka. In the absence of digging very deep know that excess copper in your system is stored in the brain and liver -- and copper/zinc dysregulation is at play in most breast cancer patients. HER2 particularly seems to have an affinity for low zinc and elevated copper, as does TNBC.

Can you get them to test your serum zinc and copper and ceruloplasim levels? Those are what my naturopathic oncologist has been tracking for me. When HER2 disease escapes radiation for instance, they are finding that it is doing so using the copper pathway -- so we really want to shut that down if there is something there. I did this in my body by taking extra zinc piccolineate which boosted my zinc levels and chelated out the excess copper (which was sky high when I was first diagnosed). This stuff isn't "standard of care" but it is scientifically based, even if mainstream oncology ignores it.

I agree that you are demonstrating a mutation of your original BC, and really one wants to know what they heck it is. Liver biopsies are frightening but usually they go without a hitch. Since you have been strongly ER+ it seems likely that the cell line could have mutated in that direction but really data is going to be more valuable.

The liver does have an amazing regenerative ability as an organ so the trick will be to figure out what is going on with this mutation and to shut it down.

There are some different therapies to consider in treating the liver: chemo, radiation, and interventional radiology (using ablative techniques). I'm not familiar with the medical system there but I have learned from experience that you have to be talking to the right person with the right background -- pressing to speak to specialists if needed -- to find out what your real options are. A surgeon might say cut it out, an MO would likely look at chemo options, an RO would say give it rads. An interventional radiologist though might say let's freeze the sucker -- but since these are developing practices and IR is a "newer" discipline, your docs might not go there on their own. You might need to seek private consultations which could be more expensive -- but standard of care isn't necessarily better and, sorry to say but I've been thinking about this a lot since my brain mets were found last year, not being here is a LOT more expensive.

Ask me questions and I will answer to the best of my ability or I will go look for more info for you.

Hugs,

Ann
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 08-18-2016, 06:29 PM   #12
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 474
Re: 10 years and in trouble

Mishka

Agness is 100% correct. A doctor from the University of Michigan in 2000 started treating advanced cancer patients with a copper chelator called Ammonium Tetrathiomolybdate in the year 2000. He got some long tem remissions.

Cancer is very dependent on copper. Lets say a woman has a lumpectomy and chemo. There are still cancer cells and stem cells left. They start to split by cell division.
At first oxygen simply diffuses along the small tumour. Once the cancer reaches a size of one million cells this is no longer effective and the cancer gets a too low oxygen tension to support it. Certain Hypoxic proteins emerge and these proteins stimulate other proteins and ultimately you ger Vascular Endothelial Growth Factor protein to induce the production of blood vessels for the cancer. Many of these proteins are copper dependent including Vascular Endothelial growth factor.

Brewer used the Ammonium Tetrathiomolybdate, 20mg six times a day for months to lower the copper level by 80%. With 20% of the base copper level left you have enough copper to support life but not enough to support making blood vessels for the tumour.

He would measure the copper level by measuring the copper binding protein called Ceruloplasmin. A normal Ceruloplasmin level might be 35mg per 100cc seum. Brewer tried to get this level down to about 7mg % using the copper chelator.

A physician named Linda Vadhat is doing this with some triple negative breast cancer patients and some have remained NED for years.

Look up Ammonium Tetrathiomolybdate or TM on the internet. There are compounding pharmacies that specialize in making up the 20mg capsules as the chemical is unstable and has to be specially made. The cost now is about 6 dollars a capsule and you have to take one capsule 6 times a day for 4 to six months. However once you get the copper level (ceruloplasmin level) down to 20% of normal you can keep it down by taking 50mg elemental Zinc three times a day and zinc salts are cheap.
When you take zinc three times a day a protein called Metalothionein forms in the intestine and this prevents copper absorbtion keeping the copper level down. It is well worth a try.

Paul
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