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Old 06-25-2012, 12:34 PM   #21
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

MRI results of today:
Thank God, no progression. Herceptin is working and there are no new tumors. And all present brain tumors are same size as two months ago, even with such a small dose of intrathecal herceptin. So on the way of getting destroyed, just as all the previous that did this. Next MRI in 6 weeks and we should find nothing left!!
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Old 06-25-2012, 12:36 PM   #22
KDR
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Yay! Sending warm love your way!
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 06-25-2012, 12:41 PM   #23
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Thanks Karen
God bless you.
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Old 06-25-2012, 02:36 PM   #24
Rolepaul
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,

As always, Nina and I are thinking of you and Carol. We are hoping for the same success as Nina had.

Paul
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Old 06-25-2012, 04:20 PM   #25
KDR
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Joan,
When you find out, let us know. It'd be interesting to see if your facility is working with the Chicago facility. If they aren't could you ask why?
Thanks
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 06-25-2012, 09:34 PM   #26
marvass
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Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

We were told that we could start at Chicago and then be transferred to Sloan Kettering after a few weeks. You have to try.
Thanks everyone.
Mario
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Old 06-26-2012, 09:10 AM   #27
KDR
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Posts: 1,580
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

What facility are you at in Chicago?
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 06-26-2012, 09:30 AM   #28
Rolepaul
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Location: Boulder Colorado as of January 2013
Posts: 385
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Chicago is Dr. Raizer at Northwestern. You can contact him through a google search. He is now at 30 mg twice per week in his study.
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Old 06-26-2012, 10:34 PM   #29
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Dose escalated to 90 mg IT herceptin together with 25 mg IT hydrocortisone (steroid) per week, as from this week. Should do the trick. Took first dose and still no side effects with this higher dose. Fingers crossed. Have to bear with me for another 6 weeks for results.
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Old 07-04-2012, 09:51 AM   #30
ehower
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,

First of all, thank you for your posts. I hope your wife is continuing to do well. I, too, have brain mets-her2neu breast cancer. I am supposed to start Tykerb and Xeloda but Xeloda is a chemotherapy drug and OH- I just don't want to do any chemo again if I can help it. So, my question is, while your wife is taking intrathecal Herceptin, is she also on any chemotherapy, or is it just the IT Herceptin that is so effective. Your posts have been a buoy for me and have offered me hope. Thank you! I hope you are both doing well.
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Old 07-04-2012, 03:36 PM   #31
Rolepaul
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Nina (my wife) had IT topotecan at the same time as IT Herceptin, but Carol (Mario's wife) only had straight IT Herceptin.
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Old 07-04-2012, 10:53 PM   #32
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi ehower,
No chemo, just IT and IV herceptin. Looks like it is the IT herceptin that does the best work for brain mets. Wish you luck.
Mario
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Old 07-05-2012, 12:55 PM   #33
ehower
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario and Paul, Thank you so much for getting back to me. Now, if I can find someone to administer it to me!!!!! That's my next search! Mario, How did you talk Carol's oncologist into doing it? Mine said no! I'm getting a 2nd opinion at the CTCA in Chicago but I'm in PA.

To both of you and your wives, I wish you the best. My thoughts are with all of you!!

Eileen
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Old 07-05-2012, 11:41 PM   #34
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Our oncologist suggested it himself when we told him that we where getting the trial. So it wasn't a problem.
But chicago are still recruiting and giving 30mg twice a week. Good luck eileen and may you find a way quickly.
Mario
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Old 07-11-2012, 12:08 AM   #35
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Quick update, last week dose escalated to 100 mg IT herceptin and 50 mg IT hydrocortisone per week (together with IV herceptin 6 mg per kilo every 3 weeks). Carol is feeling fine, no funny feelings anymore, just as if she is cured. She did not need any painkillers or oral steroids this week, just after 7 IT procedures. From outside everything is looking great, now have to wait another 4 weeks or maybe less (too eager to wait this long!!) for next MRI. Fingers crossed.

Will keep you posted.
Mario
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Old 07-11-2012, 05:56 AM   #36
Rolepaul
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Nina had some pain in her lower back for the past few weeks. Although MRI scans were not scheduled until the first week in August, Early spine and brain scans were run on Friday and Monday. The result was that no evidence of disease was found in either area. Looking at blood cells under a microscope, there are no abnormal ones seen. Tumor markers are down to non-disease population levels. Spinal tap glucose and protein are also at non-disease population levels. PET scan is clear. Bone scan is clear. Nina actually gave massages on Monday (She is both a RN and a massage therapist) to relieve boredom and have some additional funds. Her treatment was in Houston (where she lived with her brother) and my work is in Raleigh North Carolina. Every two weeks I go to visit, and she travels to visit other family members as well. Her income will help with the expenses that are incurred. She went from being at the hospital as much as four days a week early in treatment to now looking at once every two weeks, with IT and IV treatments on the same day. It has been tough on us mentally, physically, and financially; but I can tell you her quality of life has been very good.

Carol and Nina took a chance on an inovative method of central nervous system treatment. The parts of the treatment were previously in place, however the borrowing of the pieces from other treatments was used to make a new treatment. I believe this should bring hope to those who have seen Her+ creep into the brain and/or spine. Both Mario and myself fought for our wives to get treatment that has made a difference in outcome. I hope this leads the way to other doctors accepting this as a way to retun patients to a normal life.

Mario and Carol are truly amazing. They came to the US to get treatment, as well as to France. The treatment that was done in Malta was the reason. After only 7 treatments to have the ability to be almost back to normal is exciting. This is so different from the vast majority of outcomes that there needs to be continued work beyond the Northwestern and France studies. I heard MD Anderson would like to run a multi-center clinical trial to get Intrathecal treatment for Herceptin positive patients with CNS involvement. If an Ommaya reservoir is placed, treatment literally takes less than fifteen minutes to complete. IV treatment for the whole body is another 30 to 60 minutes. Insurance coverage is a must, and we have had good luck with Anthem Blue Cross Blue Shield.

To all out there, do not give up hope. There are so many clinical trials, new drugs, new methods with older drugs, and people willing to share there stories. I inspire you to perspire. Go use the internet. You have a patient case load of one. If you need help with a consideration, ask your physician. If they do not want to take the time, move to another one. If you ask, they should investigate. If you ask for something, provide them with your reasons why. We gave seven cases histories for IT Herceptin that came from the internet. If you are unsure, get on a forum board like this one. Lani has one of the best points of contact with this subject matter in the world. Many of the ones on this site will tell you their results from a treatment pattern. You will also hear stories that tear your heart, as well as the success stories that give you hope. Carol and Nina should be the ones that let you know there are good outcomes even with the most dire predictions.

Never give up (Kevin Costner as Elliot Ness in the Untouchables)
I hate to lose (William Shatner as James T. Kirk in the Wrath of Khan)

Use this for inspiration.
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Old 07-11-2012, 06:13 AM   #37
Rolepaul
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

ehower,

Please have your physician contact Monica Loghin at MD Anderson in Houston Texas. She can give the doctor information about how it was administered for Nina, the clinical signs to look for, and the outcome that shows No Evidence of Disease in the brain, spine, or rest of the body. Then I would appeal to the next level within the administration. If that does not work, I would look at a major cancer center and ask them if they will try it (Clevela nd Clinic in the West, maybe Sloan Kettering in the East). The way to explain it is that Herceptin is the standard treatment for HER+ disease, intrathecal treatment is the standard for CNS involvement, and that the two together are the natural development (Reese's Peanut Butter cups concept). Both have been used for ten years, so there is adequate history on them separately. If you google search "Herceptin Brain" there is a case in Germany performed by a Spanish doctor which had exceptional results. Likewise, there was one in Japan, and a couple more that I was able to access. I only had four days to do research due to the deterioration in health that was occurring in Nina's case. Then do a "Compassionate Care" request. This is like a one person clinical trial. You will sign that you and your your family will not sue the doctors for any negative outcome. If they chose to you an Ommaya reservoir, there will be a short general anasthesia operation to place it. If you choose lumbar puncture, that surgical intervention is not needed. I would pick 40 mg for a couple of doses to determine if there is a negative reaction, and go to 1.333 mg/kg and stay there until the MRI shows no uptake in the area of the tumors.

Good data on what you are asking, with the ability for the doctor to contact others who have given treatment is important. I was able to send a message very high up in the organization that treated my wife. Mario had approval for the clinical studies for Carol. Sometimes all it takes is the physician knowing that you will do it with or without them to get approval.

Good luck and let me know if I can help.

Paul
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Old 07-11-2012, 09:34 PM   #38
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Thanks Paul

Mario
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Old 07-29-2012, 07:01 AM   #39
marvass
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Update:
Till now 10 IT herceptin procedures, started at 30mg and escalated to 100mg. Last 4 of 100mg together with 50mg IT hydrocortisone per week through lumbar puncture, no radiation or chemo. My wife is still doing fine, living a normal live. MRI to check if the brain lesions are all gone in about 2 weeks, will let you know results as soon as possible, but I can feel like I know what the results are going to be! Fingers crossed I'm right.
Mario
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Old 07-29-2012, 10:48 AM   #40
ehower
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,

I think you told me you were in NY. Is that true? I'm in PA and can't get my area doctor to do IT Herceptin. My lesion is on my right cranial nerve and I have double vision. I am undergoing radiation-- on day 2 out of 15. No luck so far. The docs don't know if my eye will ever recover. It's visibly misaligned and I'm struggling to perceive my world in a visual fashion. If you could let me know where you're going, maybe I could go there, too. My doc says there is only anecdotal success-- a patient here and a patient there. But your wife and Paul's wife might be in one of those antecdotal stories. I'd like to be anecdotal storie, too!!

Thanks for sharing the good news about your wife. I am very very happy for you. xoxo Eileen
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