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Old 06-10-2012, 07:56 PM   #21
Rolepaul
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Ommaya does not need any other protection than you normally do. They put the Ommaya into the head and it is just like a vaccine when they give the treatment. It is the same Herceptin as used via IV. They use 5 mls of sterile saline or water for injection to dissolve the amount of material targeted. Please contact me via private message and I will give you the contact information at MD Anderson and they will take your doctor's call to let you know what was done for Nina. All I want to tell you is that this will take a compassionate care protocol at the hospital there. I will do everything I can to help you.

Paul
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Old 06-11-2012, 07:23 AM   #22
Rolepaul
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

By the way, yes you can still wear an ATV helmet. I did not read that carefully. You probably need to give it a few days to heal up from surgery, maybe cut just a bit of padding if there is any interference, but I think you should be okay.

Please contact Dr. Raizer at Northwestern on how he is formulating the Herceptin if you cannot get in touch with MD Anderson. See me a Private Message for contact information for me, MD Anderson, and Dr. Raizer.
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Old 06-11-2012, 08:00 AM   #23
calisa71
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I am in touch with Shanu modi at msk. Sent her some info from md Anderson. If Shanu and Amal could speak that could help. I am a established pt with mskcc.
Lisa

Shanu Modis email is modis@ mskcc.org.
646-888-5243
__________________
Dx in 1998 - 27 yrs old
Triple positive
1.1 cm tumor with DCIS. Mastectomy ACT followed by Tamoxifen
Recurred 2000 to lymph nodes in axilla and bones
Rads- more chemo plus one year of Herceptin
Recurred to more bones- lots of rads to bones
32 or more different chemo combos since 2001
Found to be ER-/PR-
Brain met 2007- 5 more to follow all treated with gamma knife latest one 3 cm on brain stem treated April 25
5/1/12 irinotecan,tykerb,Herceptin,xgeva
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Old 06-11-2012, 12:13 PM   #24
dchips1
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

pertuzumub has the same molecular weight as herceptin, would be interesting if we could add or use this in altering treatments with herceptin intrathecal therapy?

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.


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Old 06-11-2012, 01:20 PM   #25
calisa71
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Darita. Is the cancer in your csf or just spine(bone)?
__________________
Dx in 1998 - 27 yrs old
Triple positive
1.1 cm tumor with DCIS. Mastectomy ACT followed by Tamoxifen
Recurred 2000 to lymph nodes in axilla and bones
Rads- more chemo plus one year of Herceptin
Recurred to more bones- lots of rads to bones
32 or more different chemo combos since 2001
Found to be ER-/PR-
Brain met 2007- 5 more to follow all treated with gamma knife latest one 3 cm on brain stem treated April 25
5/1/12 irinotecan,tykerb,Herceptin,xgeva
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Old 06-11-2012, 11:36 PM   #26
dchips1
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Both of the lesions are inside the spinal canal and sitting on a nerve or two. In the thoracic area t3-4 and t-8. I have had 20 rounds of radiation to both the areas.

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.


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Old 08-02-2012, 05:56 PM   #27
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

My daughter is in the Chicago trial. Just had her first treatment. How long does it take to know if the medicine is working?
Thanks for any info.
Ev
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Old 08-02-2012, 07:02 PM   #28
KDR
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Calisa71,
I am Dr. Modi's patient. Are you treated on Fridays? (I've been there so long, so often, surely I must have seen you). You can PM me.
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.
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Old 08-02-2012, 07:18 PM   #29
hutchibk
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

If I am not misreading this (which I could be...), I believe that intrathecal Herceptin is available at every clinic as an approved treatment, as long as your Onc is doing it and insurance covers it.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 08-03-2012, 07:07 AM   #30
Rolepaul
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

The is a likelihood that she will have nausea and vomiting with the first treatment. That would be the best indicator it is working as it means the cancer cells have been destroyed. First MRI from now will show it is working otherwise. What was the dose? Please post what happens.
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Old 08-03-2012, 02:01 PM   #31
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

My daughter is receiving 10 mg two times a week for the first month in the Chicago trial. She is getting herceptin only IT- no other additive. She also gets Herceptin IV - along with Tykerb that she has been on prior.
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Old 01-23-2013, 01:28 PM   #32
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Finally very good news! Daughter was feeling better after two injections of the higher dose 60 mg, and had a couple really good days last week. Now we have found out the cytology results from last week's draw shows degenerating mastastases type cells in the sample. They draw samples each week during the treatment.

Now the doctor has scheduled 80 mg for the next treatment. He said the degenerating cells shows we are finally getting somewhere.

I am elated that he seems agreeable to upping the dose of herceptin IT to where it needs to go to get rid of the cancer cells.
She is still taking Tykerb but carefully as it does cause some stomach upset. she is also still getting the herceptin and Perjeta in the vein port.

She gets her new Ommaya next week so maybe even better perfusion and less painful sticks. Keep your fingers crossed that his Ommaya port installation and healing goes well this time. They will be installing it in the same well healed area as the one that became infected and abscessed.

This was a GOOD day! May everyone here have some good days too.

Ev
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Old 01-23-2013, 02:35 PM   #33
Rolepaul
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I have tears in my eyes. I was so frustrated with the doctor. The goal is 1.5 mg/kg of body weight. Your daughter is truly exceptional, as are you. Never give up. Hate to lose.
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Old 01-23-2013, 03:17 PM   #34
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Thanks, Paul,

You have been a great help to many others - my daughter and myself- during this troubling time. 80 mg will be getting very close to the 1.5 mg per kg for my daugher, Susan, as she has lost so much weight and is now at about 120 lbs. I am feeling that we have won this doctor over finally and if we need to go higher he will do it for us.
I am breathing a big sigh of relief today as now she has a chance.

Ev
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Old 01-23-2013, 04:34 PM   #35
Rolepaul
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

They should see improvement in the MRI scans in the next eight weeks. I would hope she is clear of lesions by mid-May. Have them make sure to give steroids if there is dizziness or nausea when they bump the dose. I let some people meeting in NY tomorrow know about this. Patients need this option and doctors need to know about this type of result. You owe me a soda when we meet. I prefer Coke Zero, no ice.
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Old 01-24-2013, 12:50 PM   #36
Rolepaul
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Keep up the good news. Evlin, Please PM with the doctor treating Susan as Monica Botero wants to see the center and get similar treatment.
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Old 01-24-2013, 07:13 PM   #37
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

an extra note here- this physician may not take other patients. he is doing this cautiously in consult with other MD Anderson physicians.
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Old 01-25-2013, 12:52 AM   #38
marvass
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

So glad for you Evlin, I am so happy for you. Once you keep pushing you get what you wish for, and sure Susan will be cured! Wish you luck with the new ommaya.
Mario
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Old 01-25-2013, 11:45 AM   #39
MonicaB
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I thank you all those who fight the good fight. As more patients are taken care of with good results, I don't understand why they are not taking other patients. I'm one of them in need of a chance
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Old 01-25-2013, 09:23 PM   #40
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Monica, I sent you a private message. I think compassionate coverage will become more available soon.
More physicians will be more comfortable about doing the Herceptin IT therapy.
Some day it will probably be approved for first line treatment for brain and spinal cord mets with the Her2 diagnoses.

Ev
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