HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 07-29-2012, 12:11 PM   #41
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Yes we were in NY till 3 months ago but had to travel back to Europe to get the treatment done at our homeland, by our oncologist here, since I could not find anywhere in the states except the chicago trial, and this was taking time. Thanks for the good wishes. I think Paul can help you out to be another antecdotal. Just get in touch. Good luck Eileen and don't give up, fight for IT till you get IT. As far as I know, all that tried IT got cured.
Mario
marvass is offline   Reply With Quote
Old 07-29-2012, 12:29 PM   #42
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Eileen,
I'm in PA too. I've heard rumblings that there may be a trial site in Pittsburgh opening up in Aug. Boy, I hope that's true! Pittsburgh would be VERY do-able for me...I have family near there.

I'm due to have gammaknife on Aug 10th...then I'll go from there.

Best of everything to you! and Nina and Carol too, of course!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
NEDenise is offline   Reply With Quote
Old 07-29-2012, 12:33 PM   #43
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Thanks denise for the wishes to Carol and Nina, and for the wonderful news of this trial. Wish you a quick recovery.
Mario
marvass is offline   Reply With Quote
Old 07-29-2012, 12:35 PM   #44
schoonder
Senior Member
 
Join Date: Jul 2008
Posts: 185
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Searching clinicaltrials.gov with intrathecal and trastuzumab as search key provided this as the only link to stateside trial.
Don't know how much "anecdotal" data from this evaluation has been published, if any, I hope that it was all positive.
Details of trial and contact particulars can be found at:
http://www.clinicaltrials.gov/ct2/sh...tuzumab&rank=1

Hope this little bit of info was helpful.
schoonder is offline   Reply With Quote
Old 07-29-2012, 12:38 PM   #45
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Those are the two trails going on at the moment since last year, one in Chicago and the other in France. A lot of talking is going on at the moment that new trials are going to start soon, but still there is nothing new listed in the trials sites. Thanks schoonder
Mario
marvass is offline   Reply With Quote
Old 07-29-2012, 12:44 PM   #46
ehower
Member
 
Join Date: Jul 2012
Posts: 13
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Thanks, Denise!!!! I wish you the very best. xo Eileen I'll let you know what happens with me!
ehower is offline   Reply With Quote
Old 07-29-2012, 12:45 PM   #47
ehower
Member
 
Join Date: Jul 2012
Posts: 13
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Thanks, Mario. You're giving me a reason to hold on....

Eileen
ehower is offline   Reply With Quote
Old 07-29-2012, 05:24 PM   #48
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

So glad to hear the good news. May it always be so.
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.
KDR is offline   Reply With Quote
Old 07-29-2012, 11:24 PM   #49
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

http://www.brainmetsbc.org/index.php?q=node/44
__________________
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."
hutchibk is offline   Reply With Quote
Old 07-30-2012, 08:02 PM   #50
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 385
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

That website is not very comforting. I read it a few hours after we found out about the disease going from the brain to the spinal nerves. All it did was inspire me. Based on that work, both Carol and Nina should have given up. Neither did. Things are moving faster than many of our knowledge leaders can keep up with. I do not agree with the articles assessment, but respect the author's interpretation of the most frequent result.

You can stay in the box, go out side the box, or stand on the box so your voice carries louder. Guess which I am?
Rolepaul is offline   Reply With Quote
Old 07-31-2012, 04:19 AM   #51
ehower
Member
 
Join Date: Jul 2012
Posts: 13
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

I agree. I was very depressed after I read this article....
ehower is offline   Reply With Quote
Old 07-31-2012, 04:22 AM   #52
ehower
Member
 
Join Date: Jul 2012
Posts: 13
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Paul- or anybody out there.... My cancer has spread to the 6th cranial nerve which controls vision. I now have severe double vision and am cross-eyed. Very difficult to handle emotionally. I am going through radiation to try to stop the progression but it's not repairing the double vision. I have talked to my doctors about intrathecal herceptin but have gotten nowhere. I know I can't travel to France or IL to get the treatment. I'm going to try one last time with my oncologist on Thursday to see if he can contact the doctor at MD Anderson. I've fared through this whole cancer ordeal so well, but this has really got the better of me. Thanks for your encouragement. I need it so much...

Blessings,

Eileen
ehower is offline   Reply With Quote
Old 07-31-2012, 05:05 AM   #53
Pray
Senior Member
 
Join Date: Apr 2011
Location: Michigan
Posts: 1,158
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Eileen, My heart goes out to you. I am hopeing and praying all will go well for you. I don't know your whole story but if this helps the have been lists recently that here of people who will supply you with airfare and hotels to get you where you need to be to get the help you need. Gods blessings to you and your family, you are quite the fighter! Hope springs eternal!
__________________
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
Pray is offline   Reply With Quote
Old 07-31-2012, 06:34 AM   #54
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Eileen,
I'm so sorry to hear about your vision. One of my lesions is in the "vision center" of my brain too...and I'm dreading the side effects that may ensue.

If you don't mind my asking...where are you being treated currently? If you'd rather not post publicly, PM me. I'm wondering if you might not be near enough to one of our major cancer centers in PA to get a consult. Heck, depending on where you live in this great big state...you might even be closer to one of the other "majors" in a neighboring state.

Loyalty and trust are important...but sometimes that second opinion is the one that makes the difference. In our current situation...time is definitely of the essence! Wait and see? ...that's not an option.

Praying for you, and sending love through cyber space!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
NEDenise is offline   Reply With Quote
Old 07-31-2012, 07:01 AM   #55
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 385
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

I am trying to help Eileen, Denise, and Ashley. This is getting frustrating. Is it time to get some push in the media? I made a first inquiry, now I need to move it up to the next level. How about getting some push from the group here with your DC politicians to get some movement? The doctors want to do it, the patients need it, but the paperwork to do it is tremendous. MD Anderson wants to get a multi-center study going, so I am going to be there on Friday to do the necessary part from the patient's side to get this going. I have a VP at Genentech/Roche that I might need the help of this group to put some pressure on. I will give him one more chance to do the right thing, then we group up or move it up a rung. Genentech/Roche made a lot of positive points with Pertuzumab approval, lets give them a shot to do the same with this approved drug and an approved method. I have to see what it takes to move this from "Compassionate Care, off label use" to "New indication". I still have a contact or two that I have not used yet. I heard Ashley in Nashville got approval. Time to lawyer on a few more doctors. The time to do IT Herceptin is now, not two to five years from now.

Ants can get elephants to move. This just have to act together. Lets be Ants.
Never give up.
I hate to lose.
Rolepaul is offline   Reply With Quote
Old 07-31-2012, 09:27 AM   #56
ehower
Member
 
Join Date: Jul 2012
Posts: 13
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi, Denise,

I'm in Bloomsburg, PA and being treated at Geisinger Medical Ctr. I like everybody there very much, but I'm feeling like my situation (with leptomenegeal disease, double vision, etc.) is impelling me to look toward IT Herceptin. Paul, you're an honest-to-goodness go-getter, and I can't thank you enough for all your work and dedication. Thank you.
Eileen
ehower is offline   Reply With Quote
Old 07-31-2012, 12:03 PM   #57
marvass
Senior Member
 
Join Date: May 2012
Posts: 103
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hey Paul, I don't know how to thank u enough!!
Denise, Ashley and Eileen, I did dedicate 3 weeks full time 24/7 running around, asking everyone to help me. At first I found all doors closed, but with a good fighting spirit I finished up able to do IT herceptin in 3 places, Chicago, France and my homeland, while my wife was still in NY. It was a hard 3 weeks, and every day I felt stronger. And with Paul's help I would have had MD Anderson soon. If I didn't succeed I would have tried California too. But then we choose our homeland and immediately started in a few days the first procedure. If you want IT I'm sure you can get it and if you don't find in the states you have to find anywhere in this universe. After all you have a right to get it once it is there and it is curing people. So be strong. Wish you all a very quick recovery.
Thanks Karen for the good wishes and for your help, Brenda and Denise
Mario
marvass is offline   Reply With Quote
Old 07-31-2012, 12:28 PM   #58
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 385
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,
Drink a toast of champagne for me with Carol. Happy Anniversary! The next ones will be even sweeter. Here's to good MRI scans for Carol next week.

I will do any magic I can to help, particularly with HER+ brain mets. I do not like being told no, and neither did Mario. Save your life or help a family member save theirs by investigating, making a choice on treatment, and going forward. I am backing Intrathecal Herceptin for Brain/LMD/Spinal nerve mets until a better choice comes along.

I think I am getting on the back of the dragon in South San Francisco. They are trying to see who I am through some of their contacts, but none of those who know me are saying anything. Let's see if I can get in the saddle and steer the dragon the way I want. I will let you know more soon.
Paul
Rolepaul is offline   Reply With Quote
Old 07-31-2012, 01:33 PM   #59
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,033
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

RIDE 'EM cowboy Paul!!!

Let us know what we can do as a group.
__________________
"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 half of 2017. Boring ...
StephN is offline   Reply With Quote
Old 07-31-2012, 05:08 PM   #60
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Paul,
I'm with Steph and Eileen...THANK YOU for all you're doing! And please...if there's something we can do, as a group, or even as individuals...I know I'm on board, and I bet a lot of our friends here would be willing to help too.

Eileen,
Geisinger has a good rep. I know at least one of the docs who treated my mom, at Fox Chase, is there now. But sadly...it's not where the IT Herceptin trials are...so it sucks either way.

Happy Anniversary Mario and Carol! And many, many more!

Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
NEDenise is offline   Reply With Quote
Reply

Tags
brain lesions, clinics it herceptin, doctor it herceptin, intrathecal herceptin, it herceptin

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 07:32 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2017, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter