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Old 03-25-2011, 02:50 PM   #1
Rick Miron
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Brain Mets

A little over 3 weeks ago my wife (age 49) thought she was having a stroke and was rushed to the hospital only to find out she was having a seizure and had several brain mets. We have a 14 year old daughter who was also the only one with her at the time. This has been very traumatic for us. She had Her2+ breast cancer 3 years ago. She had a lumpectemy, the tumor was very small (stage 1), it had not gone to the lymph nodes. She followed up with chemo, Herceptin, and radiation. I never dreamed this would come back--but little did I know. It took me a week to get myself together and then started searching the web. Most of what I found was dismal to say the least. I am happy to have found this site as it has given me more hope. We live in Sebastapol, CA. She has just completed 15 days of WBRT. Her local oncologist has pretty much said not much else can be done. I am taking her to MD Anderson in Houston next week, and then coming back here and taking her to UCSF (not until 4-12), and then Stanford the day after that. Does anybody have an opinion on which is better? She has about 10 mets. Most small, 2 or 3 larger ones--the largest being 2.9cm. I am reading about the gamma knife. I get mixed messages. I hear that it can only be used if a few tumors exist, and then I hear that it can be used for 15 or more. Not sure what to believe. Her oncologist also told us chemo wasn't really an option but then I read that it is. Does anyone have any thoughts? I appreciate any and all feedback and I thank you in advance for it. Thsi site has given me new hope and optimism at a very difficult time. Thanks--Rick
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Old 03-25-2011, 03:13 PM   #2
chrisy
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Re: Brain Mets

HI Rick,

Well, that was not news you were expecting or wanting to hear. But the story is not necessarily as grim as has been painted for you so far.

There are many on this site who have been dealing well with brain mets, some for many years. There are options and you do need to get some input from top docs in that area of expertise.

All of the places you mention would be good choices for 2nd opinions. Several people have been treated at UCSF which is closest for you and is a major cancer center. If you are seeking MORE options, Dr. Keith Black at (I think at Cedars in LA area) is a top doc in this field.

You indicated that your wife has just completed 15 days of WBRT. Maybe I misread. But if I read that right, you would consider her "treated", and be watchful for recurrence but not do any additional "zapping" unless/until that happens. If I misread and she has NOT been treated, that's a lot of mets for targeted radiation but not necessarily out of the question - it's been done.

Having WBRT would likely preclude getting that (WBRT) again, if there is a recurrence. However, cyberknife or gamma knife or IMRT to target specific mets could still be an option. It's not necessarily a "this was the only chance" situation.

As far as systemic therapy, the issue is that herceptin and other large-molecule drugs do not pass the blood-brain barrier so are not so effective against brain mets. However Tykerb (another Her2 targeted therapy) does cross the BBB and can be very effective. It is usually given in combination with Xeloda. Brenda (posts her as hutchibk) has had good success with Tykerb/Xeloda and then also Herceptin in conjunction with IMRT targeted radiation to control brain mets for several years. There are also other chemos that can be effective.

I'm not one of the "experts" on board here, but as an interested observer I know that there are options.

Keep the faith
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 03-25-2011, 03:45 PM   #3
ljbm
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Re: Brain Mets

You are doing the right thing by taking her to MD Anderson-Houston. Travel can be a chore but it is well worth the effort. Their team does a great job in assisting with that. It is a healing place with a world-class team of doctors. I am a 3 1/2 year survivor thanks to God and MDA. I hope that things go well with you.
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Old 03-25-2011, 04:12 PM   #4
krisvell
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Re: Brain Mets

Rick,
I am very sorry to hear about your wife. Im going to share with you what I've learned in the last two months in the same journey that I am on. I found out I had a brain met on my brain stem 2.0cm; fairly large. My symptons were numb leg and then started seeing double vision. Since then, I've had two Gamma Knife treatments and have seen a 30% shrinkage in volume. So I am hopeful. I am feeling a little bit better everyday with some improvement in my vision.
With regard to systematic treatment, my oncolgist had 3 options;
1. wait and watch as they have not found cancer anywhere besides the one brain met.
2. Tykerb + Femara (already on)
3. Tykerb + Xeloda

She’s thinking #2 but wants to wait until I get a 2nd opinion.

Chrisy’s right Tykerb crosses the brain blood barrier. I’m not 100% sure but I think Xeloda does too.

I am going for a 2nd opinion on April 4th at Memorial Sloan Kettering (NY) and meeting with an Oncologist who deals a lot with brain mets. I sent an email to Musa at the brainmetssbc website and she gave me a few names. My oncologist helped me decide who to see.

2011 seems to be an epidemic of brain mets on this site... There's a lot of new posts. There's also a lot of ladies who are successfully dealing with this. (founder-Christine Druher,StephN Courtney L, Kavvy, Hutchibk (Brenda), Kiwigirl, Joan M, Virginia, Barbara H., Pam and others that I probably forgot about). They are all giving me hope and I hope they do for you and your wife.

A few things that were really a big help to me were:
- reading the Brain Mets threads on this site. I just did a search and learned a ton.
- http://www.brainmetsbc.org/ - Just dedicated to bc brain mets. Karla told me about this. That’s where I found Drs for a 2nd opinion. I send an email to Musa and she gave me two top docs in NY and Boston that were close to where I live. Although Chrisy mentioned Dr. Keith Black whos the rock star for Brain stuff.
- http://mbcnetwork.org/ - Metastatic Breast Cancer Network. Great resource.
Sending your wife and family hugs, prayers and love,
Kris......
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 03-25-2011, 07:03 PM   #5
Elizabethtx
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Re: Brain Mets

My heart goes out to you and your family. I can not offer any brain met advice except research and don't give up. I am 47 and have a 13 year old, so am very close to your wife's situation. I know it must be a shock and can empathize with the fear and worry you must have. Certainly by three years out you must have been feeling very comfortable and then this happens. As you can see on this site many others are dealing with all kinds of metastasis and doing very well. You have come to the right place, you will receive lots of advice, care and support here! My prayers for peace for you.
Elizabeth
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Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011








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Old 03-30-2011, 07:34 PM   #6
joyce lutz
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Re: Brain Mets

My daughter is to receive LINAC (SRS) next month. She has several brain mets and they are zapping them in 2 separate sessions. She had WBR in June of 2010 but they didn't shrink all that much and there has been a bit of progression lately thus the SRS surgery. I'd advise getting 2nd opinions for future treatment and what to treat with as well. Best of luck to your wife.
Joyce
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Old 03-31-2011, 02:19 PM   #7
Becky
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Re: Brain Mets

As far as true chemotherapies are concerned, Xeloda and Temodar cross the blood brain barrier.

Tykerb (a targeted Her2 therapy) does too but it is an immunotherapy.
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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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Old 03-31-2011, 03:26 PM   #8
SoCalGal
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Re: Brain Mets

Has she had a pet/ct? Is there any other areas of "interest"? I think springing into action and seeking additional opinions is good. I like the idea of some kind of therapy in addition to the rads. I am also (like Chrisy) unclear on your post but it seems that your wife has been treated with the WBRT, so at this point it is good to get a game plan moving forward. Stay focused and don't loose faith!!
__________________
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 03-31-2011, 09:08 PM   #9
Joan M
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Re: Brain Mets

Rick,

It seems that your wife has already started the treatment process with WBR, if I'm reading your post correctly. I would agree on a second opinion for follow up, as the WBR was just the beginning of the process to keep your wife's brain mets under control.

As mentioned, several chemo drugs do cross the BBB like Xeloda and Temodar, as well as the targeted antibody Tykerb (similar to Herceptin), which attacks HER2+ breast cancer via a pathway different from Herceptin.

Your wife can be given a combination of these drugs, and I would also ask the doctors whether she can take Herceptin again and possibly a combination of Herceptin and Tykerb. Studies have shown that the combination works well, even though it seems that some doctors are reluctant to give these two drugs together. So, the WBR is not the only treatment for brain mets.

It's also important to find out whether you wife has mets anywhere else, as this will affect a doctor's choice of drugs and drug combinations.

As Chrissy mentioned, if all the mets do not go away or if some of them come back after the WBR, your wife has other options with targeted radiation treatments to zap individual mets.

I had one brain met. It was 2.6 cm and treated with surgery and then 5 shots of IMRT. That was in October 2008.

I'm wishing your wife success in her treatments. Keep the faith. There are other options.

Joan
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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 03-31-2011, 11:08 PM   #10
Lani
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Re: Brain Mets

A kind thoughtful radiation oncologist at UCSF who specializes in brain mets from breast cancer is Penny Sneed, MD

A Stanford neurosurgeon developed the cyberknife and they seem to still be in the forefront with its use so your plan to visit both facilities after MDA seems a good one.

In southern California , Keith Black, has a lot of experience and it seems several of the ladies here have been treated by him, but with so much expertise in No. California, I wouldn't think it likely you really would have to look further.
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