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Old 06-12-2018, 10:32 AM   #1
Lani
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Thumbs up hope for those with brain mets

PUBLIC RELEASE: 11-JUN-2018
A new therapy proves effective against brain metastasis
Silibinin reduces brain metastasis in mice and patients, according to a study led by researchers at the CNIO. This proof of concept opens up a new path for treating these secondary tumors in the brain

CENTRO NACIONAL DE INVESTIGACIONES ONCOLÓGICAS (CNIO)


A study published in Nature Medicine by a team led by Manuel Valiente, head of the Brain Metastasis Group at the Spanish National Cancer Research Centre (CNIO), shows that the administration of silibinin in patients with brain metastasis reduces lesions without causing any adverse effects. This preliminary trial provides proof of concept that this compound could be a new effective and safe alternative to treat brain metastasis.

"We have demonstrated, taking into account all the considerations relevant to a compassionate use trial such as ours, that we can successfully treat brain metastasis", highlights Valiente. "This treatment could also be valid for any type of brain metastasis, regardless of the primary tumour that generated it", he added.

One of the biggest challenges in oncology is brain metastasis. It is estimated that between 10% and 40% of primary tumours generate metastasis in the brain, a situation that worsens patient prognosis considerably. Few advances have been made in terms of treatment; currently, brain metastasis is still being treated with surgery and/or radiotherapy. In recent years, some alternatives have appeared in terms of targeted therapies or immunotherapy, but the percentage of patients who might benefit from these therapies is just 20% in the best-case scenario.

The tumour microenvironment as a critical factor in metastasis

The role of the cellular context (microenvironment) in which a tumour develops is becoming increasingly important, not only with a view to understanding how cancer cells grow but also so we can know how to attack them. In the brain, an inhospitable environment for any element that is foreign to it, the role of the microenvironment is as relevant as it is unknown.

Valiente and his group have been studying this aspect for years, focusing in particular on two elements. On the one hand, on a population of cells known as astrocytes, which respond to damage by entering into a reactive state and which are associated with metastasis. And on the other, on the STAT3 gene, which has already been proved to be involved with brain metastasis. As shown in this research, the activation of STAT3 is significant in a subpopulation of reactive astrocytes that are key to establishing a pro-metastatic environment.

When this gene is eliminated from the reactive astrocytes, the viability of brain metastasis is compromised. With this information on the table, Valiente's research group used a novel drug screening strategy developed by them called METPlatform. This tool is capable of analysing the relationship between hundreds of compounds and the metastatic cells found in the target organ simultaneously; in this case in the brain.

"This strategy allows us to assess experimental drugs as well as those that are already in use for other types of pathologies that might or might not be linked to cancer. We believe that by using METPlatform we can be more efficient in developing new therapeutic options, since we can study the metastatic cell growing in the organ being colonised", explained Valiente.

One of the compounds tested in this preparation was silibinin, whose anti-tumour potential had previously been established by Joaquim Bosch, Head of the Lung Cancer Unit at Catalonia's Cancer Institute (ICO) in Girona, and co-author of this study. "In 2016, we reported positive brain responses in two patients with no other treatment options who received silibinin, but we did not know how it worked. Thanks to this research, led by Valiente's group, we now understand how it acts at the level of the brain", said Bosch.

A new therapeutic concept with encouraging results

Following the good results obtained by blocking STAT3 with silibinin in mice, the authors established a cohort of 18 patients with lung cancer and brain metastasis for whom compassionate use to this drug was granted in combination with standard treatment. 75% of the patients reacted positively at the level of brain metastasis. Three patients (20%) displayed a total response, and 10 (55%) a partial response. Average survival rate was 15.5 months, whereas in the control group (composed of patients treated for this disease in the same institution during 2015-2016) it was four months.

"Our treatment mainly targets the brain environment that has been altered by metastasis. This is a new therapeutic concept", said Valiente. "We are also attacking an alteration that is only seen when there is brain metastasis, and which is necessary for its viability", he added.

"We have explored whether therapies targeting organ-specific survival mechanisms could be a novel approach to treat brain metastasis", explains Neibla Priego, first author of the study.

In spite of the positive results achieved, further trials must be conducted with this compound before it can be incorporated into clinical practice. Researchers have been trying to launch such trials for months, but so far they have not been able to secure the funding they need in order to do so. "This present research describes the first targeted therapy for brain metastasis that acts by attacking its tumour microenvironment. However, more data are needed before it can be incorporated into clinical practice. The 18 patients treated so far indicate that it would be feasible to administer this treatment and that it could be very relevant at a clinical level. Clinical trials, with silibinin or with drugs that act against this target, are crucial if we wish to make this new therapeutic option available to patients", concluded Bosch, head of the clinical study, and Valiente, research director.

Patients with brain metastasis have traditionally been excluded from clinical trials because of their poor prognosis. "It now appears that there is a move towards not excluding them given their growing importance in clinical practice. In this regard, we hope that with METPlatform we will be able to help build confidence so that new drugs can be evaluated on these patients", adds Valiente.

###

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.
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A new therapy proves effective against brain metastasis
CENTRO NACIONAL DE INVESTIGACIONES ONCOLÓGICAS (CNIO)
JOURNAL
Nature Medicine
FUNDER
Spanish Ministry of Economy, Industry and Competitiveness, Melanoma Research Alliance, Spanish Association Against Cancer, Spanish Society of Medical Oncology, Pfizer, Meda Pharma, Armangué Family, ''la Caixa'' Foundation, Fulbright Program
KEYWORDS


ORIGINAL SOURCE

https://www.cnio.es/ing/publicacione...ain-metastasis
RELATED JOURNAL ARTICLE

http://dx.doi.org/10.1038/s41591-018-0044-4
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Old 06-12-2018, 02:00 PM   #2
donocco
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Re: hope for those with brain mets

Silibinin is found in milk thistle. I thought so but checked it out to be sure. It seems you can purchase Silibinin at Amazon. Interesting. I think drugs like Jakafi (Ruxolotinib) and Xeljanz (Tofacitinib block stat 3 and these two drugs are associated with low neutrophil and low platelet counts and need careful monitoring. Milk thistle is relatively safe and of course sold OTC

Paul
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Old 06-14-2018, 03:39 PM   #3
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Re: hope for those with brain mets

Hello Donocco,
Do you think taking Milk Thistle as a preventative measure is worthwhile?
__________________
September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, IDC
December 2017: treatment by homeopathic physician
January 24 2018: lumps in neck (supraclavical nodes)
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver but inconclusive since I refused dye injection
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very large and grown into skin, agreed to try radiation
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff????
Febuary 15, 2018: first radiation treatment, cried like a baby
March 1, 2018: first Herceptin infusion, cried uncontrollably
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments
March 21, 2018: applied to John Hopkins for lymphedema vein bypass surgery
March 22, 2018: second Herceptin infusion, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
June 15, 2018 discontinue Capecitabine since NEAD
July 31, 2018 Johns Hopkins Plastic and Reconstructive Surgery for consult for Vein Bypass Surgery for lymphedema, surgeon determined I am good candidate and surgery scheduled for October 5th...
October 5, 2018: Lymphaticovenous Anastomosis at Johns Hopkins Hospital. Surgery was poorly done and failed miserably, the swelling is worst than before surgery.
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Old 06-14-2018, 09:59 PM   #4
donocco
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Re: hope for those with brain mets

Unclaimed

Id have to research this a bit but it might be. You have to speak with the oncologist first, but it might be an option. When I mentioned about Amazon selling the Silbininin I wasnt conciously telling people to buy it and take it. It might have sounded that way. I just found it interesting that the article neglected to mention exactly what silbinin is. To me it sounded like a drug in the pipeline like ONT-380 without the code designation. Im curious, did anyone on the board link Silbinin with Milk thistle?

I have no idea how effective Silbiniin is against preventing brain mets and will research this. But lets make believe its 100% effective. This is all fantasy now. Despite its "effectiveness" no drug company is going to research this as the product cant be pattened (spelling?)

Legally and morally the only thing I can tell you is to discuss this with your oncologist

Hope this answers your question, at least somewhat. Since we are talking about an OTC product the ultimate decision is up to the patient. If you are interested discuss this with the doctor.I will do some research on it. Its an interesting topic and brain mets are the most dreaded mets of many cancers

Paul
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Old 06-14-2018, 10:11 PM   #5
donocco
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Re: hope for those with brain mets

One thing I didnt mention. There are a lot of possible drug interactions between Herbs and medicines. Im sure you have heard of Ginko Biloba. It turns out that this herb activates the enzyme (enzyme induction) Cyp2C19 and can lead to subtherapeutic levels of phenobarbital
and I think Valproate, two anti-siezure drugs. There were reports of nursing home patients with seizures well controlled by anti-convulsant drugs who developed siezures after many years of seizure control within 14 days after starting Ginko for dementia symptoms. Their phenobarbital levels were subtherapeutic due to the enzyme induction due to the Ginko. Im curious what drugs fi any interact with Milk thistle
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Old 06-15-2018, 06:18 AM   #6
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Re: hope for those with brain mets

Hello Donocco,
Thank you for responding! I didn't think you were advocating or advising for the use of milk thistle. I thought it might be possible for something that may impact already present mets, to possibility deter them. Maybe?? I am very new to all of this, just began treatment in February, and I was already Stage 4. Just had a PET scan that came back NEAD so my oncologist is giving me a break from Capecitabine. I thought I could take the milk thistle during the time I'm off chemo as a safeguard, so to speak. I'm still on H&P. Brain mets arr indeed a constant source of anxiety and any possibility, especially an organic product, to thwart them is welcomed. Thank you again!!
Ana
__________________
September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, IDC
December 2017: treatment by homeopathic physician
January 24 2018: lumps in neck (supraclavical nodes)
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver but inconclusive since I refused dye injection
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very large and grown into skin, agreed to try radiation
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff????
Febuary 15, 2018: first radiation treatment, cried like a baby
March 1, 2018: first Herceptin infusion, cried uncontrollably
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments
March 21, 2018: applied to John Hopkins for lymphedema vein bypass surgery
March 22, 2018: second Herceptin infusion, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
June 15, 2018 discontinue Capecitabine since NEAD
July 31, 2018 Johns Hopkins Plastic and Reconstructive Surgery for consult for Vein Bypass Surgery for lymphedema, surgeon determined I am good candidate and surgery scheduled for October 5th...
October 5, 2018: Lymphaticovenous Anastomosis at Johns Hopkins Hospital. Surgery was poorly done and failed miserably, the swelling is worst than before surgery.
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Old 06-15-2018, 03:02 PM   #7
Lucy
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Re: hope for those with brain mets

Ana,

I scanned your history and didn't notice if you were hormone positive. But, if you're ER positive milk thistle should be avoided. Otherwise, like Paul said, just confirm with your oncologist that it's okay to take.
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Old 06-15-2018, 10:20 PM   #8
donocco
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Re: hope for those with brain mets

I just saw that myself about possible estrogen action. I wasnt gpong to anwer until I did some research. Its all confusing because it seems milk thistle is a weak estrogen which could actually be beneficial by blocking the effect of stronger estrogensBut so is Genistein found in soy very weak but this "weak estrogen can stimulate breast cancer growth in rats.
If it really does have a preventive action against brain mets the benefits might well outway the risks but I would hesitate to confirm this based on one study. Talk with the oncologist first. Herbs are complex because they contain many chemical constituants
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Old 06-16-2018, 01:46 PM   #9
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Wink Re: hope for those with brain mets

I couple of points. My tumor was er/pr negative. My cancer blazed into my liver big time soon after finishing radiation and first line treatments.

A friend who had gone through alcoholism mentioned that milk thistle is good for liver cleansing. I began taking it in 2002. I have continued to take it pretty regularly since that time.

My brain mets appeared at a time that I knew my liver has nearly regenerated after mets treatment. I let the Milk Thistle drop.

Later I realized that I feel better when I take the Milk Thistle (almost always used Jarrow 150 milligrams, one cap/day), so have taken it all these years.

This is the first I have heard that Silibinin could have any effect against brain mets. Such a coincidence that I never had any mets come back in brain or anyplace. My supplements, olive oil and good diet may well have contributed.
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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!
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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
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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
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7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
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Same news for 2016 and all of 2017.
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Old 06-16-2018, 09:18 PM   #10
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Re: hope for those with brain mets

This is a great thread. Can't wait to look into the milk thistle...
Thanks friends,
Flori
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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.
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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
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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 06-17-2018, 12:25 PM   #11
donocco
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Re: hope for those with brain mets

Ill do some research on the estrogenic effects of Milk thistle and try to determine how clinically significant these effects are. If you are on estrogenic blocking drugs like Tamoxifen, Evista or Faslodex these possible effects are likely to be minimized. Cant say for sure.

Aromatase Inhibitors prevent Estrogen formation but don't block estrogen action so AIs probably wouldnt be protective. Its all kind of up in the air.

Paul
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Old 06-17-2018, 12:53 PM   #12
Lucy
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Re: hope for those with brain mets

Paul,

I don't know what you will find but I can say this - my tumor was so low ER positive that a few years ago it would've been treated as ER negative. But I was told that even a 1% ER positive tumor results in a recommendation of an AI now, so I was put on an AI. My liver enzymes numbers went through the roof on the AI and I asked about taking milk thistle to help with the liver enzymes and was told in no uncertain terms that I could not take it, even while on the AI and even with a very low ER positive tumor. Different doctors or studies may show something different but that is what I was told about it.
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Old 06-17-2018, 01:14 PM   #13
donocco
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Re: hope for those with brain mets

I did some quick research and even Dr Andrew Weil cautions against ER positive patients taking milk thistle. Other reports mention experiments with female mice given very high doses of milk thistle extract (2700mg/kg) way above what a human would take and the effects on prevention of breast cancer and apoptosis of breast cancer cells were postitive not negative.

You can avoid (apparently) the estrogenic effects of milk thistle by purchasing milk thistle seed extract rather than the plant.This assumes the plant is really harmful. Go to Amazon and type in milk thistle seed extract. Ill do some more research as it keeps my retired mind active.

Paul
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Old 06-17-2018, 02:25 PM   #14
donocco
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Re: hope for those with brain mets

Lucy

Because of the possible protective effect of milk Thistle against brain m ets this might prove to be an extensive topic. AIs have no antiestrogenic blocking effects at the receptor. They prevent estrogen formation from a weak androgen called androstenedione. I wonder what the doctor would have said if you were on an estrogen receptor blocking drug like Tamoxifen or Faslodex. Possibly the same thing. You have to follow the doctors orders. Unfortunately so much of this info is up in the air. Some of the reports contradict the others.
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Old 06-19-2018, 04:56 PM   #15
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Re: hope for those with brain mets

Hi Lucy,
My biopsy report says I am estrogen and progesterone receptor negative. I bought Milk Thistle Extract from the Vitamin Shoppe. I hate to swallow pills, so I'll only take it once a day (says you can take three times daily). Once the oncologist makes me go back on the Capecitabine ( eight pills a day...blah &#129314 I probably won't take it anymore. I thought I'd give it a try while I was on a chemo break.
Hope things are going well for you!!
__________________
September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, IDC
December 2017: treatment by homeopathic physician
January 24 2018: lumps in neck (supraclavical nodes)
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver but inconclusive since I refused dye injection
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very large and grown into skin, agreed to try radiation
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff????
Febuary 15, 2018: first radiation treatment, cried like a baby
March 1, 2018: first Herceptin infusion, cried uncontrollably
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments
March 21, 2018: applied to John Hopkins for lymphedema vein bypass surgery
March 22, 2018: second Herceptin infusion, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
June 15, 2018 discontinue Capecitabine since NEAD
July 31, 2018 Johns Hopkins Plastic and Reconstructive Surgery for consult for Vein Bypass Surgery for lymphedema, surgeon determined I am good candidate and surgery scheduled for October 5th...
October 5, 2018: Lymphaticovenous Anastomosis at Johns Hopkins Hospital. Surgery was poorly done and failed miserably, the swelling is worst than before surgery.
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Old 06-20-2018, 05:35 AM   #16
Joan M
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Re: hope for those with brain mets

Thanks for this post. Excellent information. I had a brain met in 2008 and have never had another. Not sure why.
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 06-21-2018, 11:16 AM   #17
StephN
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Location: Misty woods of WA State
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Re: hope for those with brain mets

Interesting further info from Donocco.

The Jarrow Milk Thistle I take is SEED extract.
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"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 06-21-2018, 01:09 PM   #18
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Re: hope for those with brain mets

Very interesting thread! And Paul? Can I just say that you ROCK!!! Thanks for saving your retired brain for us!
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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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