 |
|
01-13-2013, 08:32 PM
|
#21
|
|
Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
|
Re: brain mets
Paul 40 mg weekly?, and steroids how much IT or IV. Going to Onc tommorow to talk about Ommaya placement. since the political entity at the hospital will do the IT chemo but no herceptin due to off label. so after all the run around I'm off the Nuerosurgeon for ommaya and then Dr office Onco nurses do the IT herceptin
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
|
|
|
|
01-13-2013, 08:49 PM
|
#22
|
|
Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
|
Re: brain mets
With Nina, we started at 40 mg and had them give typical steroids for methotrexate or gammaknife. We went four weeks at that dose, then went to 1.5 mg/kg weekly. If someone is at 70 kg (154 pounds) go to 1.5 x70 or 105 mg. Congrats on taking things into your own hands. You will sign the can not sue paper every time, but it sure beats the alternatives. Again, since I am not a doctor, this is what I would did for Nina. I cannot give you medical advice, only assist you in making a good judgement. Have them do MRI scans at monthly periods until there is nothing showing on the MRI scans. If they pull fluid, have them check glucose and protein. Then protein should spike and come down. The glucose should come up. No cancer cells should get protein and glucose to normal. Again, this is what happened with Nina.
|
|
|
|
|
01-13-2013, 09:26 PM
|
#23
|
|
Senior Member
Join Date: Apr 2011
Posts: 403
|
Re: brain mets
I know in Los Angeles UCLA does IT herceptin. I didn't know herceptin is off label. Maybe you can contact Genentech for patient assistance.
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
|
|
|
|
|
01-14-2013, 12:48 PM
|
#24
|
|
Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
|
Re: brain mets
Genentech is not supporting anything other than the Northwestern and Sloan Kettering work to determine whether IT Herceptin will hurt you at 10 mg, then 20 mg, then 30 mg, and finally 40 mg. They are not testing up to therapeutic dosing of 100 to 150 mg. MD Anderson wants to test at these dose ranges, but there is no drive by Genentech as they do not see the need. Off label treatment at the higher dosing still gets them drug to sell without paying for the high dose that is needed to be therapeutic. The drug does not get the brain and spine, that is why intrathecal treatment is needed. The drug metabolizes really fast in the spinal fluid, which is the reason for the high dose necessary. We pushed hard to have the cancer agree. I pulled every favor and every miracle I had to get Nina treated. I am trying to do the same for all the forum members that need the info, but my bag of tricks needs to be refilled. I am working on it. Nina is NED since October (really since April if you do not consider the two month's of "we don't know what this is" on the MRI scans). Time to help others.
Rolepaul (Superior is my new home town so should I change to SuperPaul?)
|
|
|
|
|
01-14-2013, 06:38 PM
|
#25
|
|
Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
|
Re: brain mets
Paul
So wonderful to hear from you and best of all, you are near a caring and loving family, and Nina is thriving!
Happy 2013 to you both!
Warmly
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
|
|
|
|
|
01-18-2013, 07:53 PM
|
#26
|
|
Senior Member
Join Date: Sep 2011
Posts: 93
|
Re: brain mets
Mom Update:
Just returned from Mayo clinic (7 hr car ride). Mom's bone mets are stable as well as nothing in liver. Her brain mets, post WBR, went from 8 to 4 lesions. Doing another MRI in 4 weeks to see if WBR has removed anymore tumors. Gamma Knife down the road......after WBR finishes it's job.
Good news.
Mom is still on flasodex and Herceptin for below neck treatment. Zometa to strengthen/heal bones.
Her oncologist told her there is not a "pill" or "chemo" that will go past the brain barrier. Is that what you all understand? She said there have been new studies done with something they thought worked, but did not.
Thanks for all the support and feedback.
Kim
|
|
|
|
|
01-19-2013, 01:08 AM
|
#27
|
|
Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
|
Re: brain mets
How wonderful your Mom has shown so much improvement! Please know that your Mom and you are in my prayers. Gods blessings to your family.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
|
|
|
|
|
01-19-2013, 12:34 PM
|
#28
|
|
Senior Member
Join Date: Oct 2007
Posts: 1,851
|
Re: brain mets
Kim,
Your mom can have a lot of hope. I had a brain met treated with targeted radiation in fall 2008, and all has been stable since then.
Don't give up hope.
Joan
__________________
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!!
|
|
|
|
|
01-21-2013, 10:04 AM
|
#29
|
|
Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
|
Re: brain mets
If the radiation does not work, then they may suggest just hit each one with radiation separately. If that does not work, there is an opportunity to get intrathecal Herceptin. There are a number of patients treated this well, including my wife Nina. The results so far, when given in doses that are in the range of 1.5 mg/kg, are showing some positive results. Initial work done in 2008 seemed to have been overlooked. I am pushing this to be evaluated and there are some doctors willing to look at this again. Nina was treated at MD Anderson in Houston.
|
|
|
|
|
01-21-2013, 10:31 AM
|
#30
|
|
Senior Member
Join Date: Dec 2011
Posts: 585
|
Re: brain mets
Okay, I have a question. KG said her mother was told that is no pill or chemo that crosses the blood brain barrier. I was under the impression that Tykerb crossed the brain barrier? Was that incorrect? Im all done with the WBR, and waiting six weeks to get a brain scan to see what effect it has had. Still on the Herceptin, getting ready to start Tykerb. I actually thought that was why I was starting the Tykerb was that it crossed the blood brain barrier.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
|
|
|
|
|
01-21-2013, 10:43 AM
|
#31
|
|
Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
|
Re: brain mets
Tykerb and Xeloda do pass the BBB. Herceptin does not in therapeutic amounts. Gamma Knife and IMRT will continue to be a first line therapy as they are less costly and can provide an immediate response that is measurable in a month. Intrathecal Herceptin is not widely in place yet. It is costly and requires weekly visits. I think if the lesions are not kept under control with WBR and/or Tykerb/Xeloda, then the IT Herceptin is the path to go.
|
|
|
|
|
01-21-2013, 11:01 AM
|
#32
|
|
Senior Member
Join Date: Dec 2011
Posts: 585
|
Re: brain mets
Thank you, Paul. KG-I would definitely mention this to your mother's oncologist. My oncologist would like me to start Tykerb because it DOES cross the blood brain barrier. We need to attack these brain lesions with everything we can get our hands on. I am told that the Tykerb is quite tolerable with the Herceptin, although a lot of GI issues. Lots of prayers and positive thoughts your way. I hope your Mom is feeling better each day.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
|
|
|
|
|
01-21-2013, 12:13 PM
|
#33
|
|
Senior Member
Join Date: Sep 2011
Posts: 93
|
Re: brain mets
I will definitely be looking into this! She claimed new studies say it doesn't work. Maybe I misunderstood. Thanks for all the help and support. This is why this site is so important!
|
|
|
|
|
01-22-2013, 02:47 PM
|
#34
|
|
Senior Member
Join Date: Dec 2011
Posts: 585
|
Re: brain mets
I haven't read any recent studies, but I know there are quite a few ladies here on the combo of Herceptin and Tykerb. Can't hurt to discuss it. smiles
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
|
|
|
|
|
03-04-2013, 09:25 AM
|
#35
|
|
Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
|
Re: brain mets
Nina continues to show no sign of disease. She had the last MRI scans at the same time as Carols on 2/23 and 2/24. She is now at IT every four weeks and IV every three weeks done locally. The new health insurance did not even blink on the IT Herceptin. We moved into a new town home on 2/15 and have been spending every moment available working on it. The view is incredible, with 30 miles on 270 degrees of the view, with the North Denver lights, the plains, and the Rocky Mountains. Nina has had so many changes in the past 15 months that she is overwhelmed. We are 2.5 miles from her mother whom she sees daily, and she sees other relatives weekly. My job has me traveling a bit, and I went down to Houston the 2/22 to 2/25, but I am happy as well. I wish that the our happiness can spread to all that are reading this, but know that there are many difficult steps on the trail.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 05:17 AM.
|
Linear Mode
