Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Just checked the threads, Carol went to 90mg in 6 weeks, then 100mg for another 8 weeks, on the 14th week MRI showed some new spots, then escalated to 150mg, then results started to show, with 3rd MRI 22 weeks after starting. So that is long!! Be patient Evlin, it is going to work.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario, Could I ask where Carol recived her IT treatments?

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

We are in Europe not US.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

MRI and CT scan this Tuesday, fingers crossed. Will post results as soon as I can.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

MRI and CT scan of yesterday:

Edema is stable just like it was two month ago.
All tumors gone except for 1 small one now measuring around 3 to 4mm diameter. There were 3 deep brain ones left 2 months ago.
All the tumors that were gone in the MRI of two months ago did not show up again in this new MRI.
Looks like we are getting closer and closer to clear all the brain from this metastatic cancer.
CT Scan came out good, there are no tumors or activity all around the whole body except for this last tiny deep brain tumor.
Thank God!

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario!
Thank God indeed!
I couldn't be happier for you, or your beautiful Carol!

Please give her all my best wishes!
Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario and Carol,
We have not abandoned you, just incredibly busy. Carol's progress is truly amazing and inspirational. I do not know what to say. I am trying to get doctors in the US to treat the same condition and getting roadblocked bad.

Wee know that Carol will show the same positive results Nina did. We have faith in the IT Herceptin and in both of you. Nina is issue free since October 2012, and really for the past 11 months. We hope all enjoy the benefits that the treatment can provide and look forward to hearing of better acceptance within the medical community.

Paul

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Depocyt is what my daughter is receiving IT and it cannot be mixed with Herceptin. Dr wanted to take her off Herceptin, but I feel it still can work now since the ommaya is in place. Maybe the LP did not give good perfusion. The Depocyt can b given every two weeks and then even farther apart later. The reason we had to go to it, is there was much progression and we needed to have some immediate relief. No obstrutions yet and that is good. So she is getting the Herceptin on alternate weeks.
The Depocyt is caustic and tends to inflame the tissues so steroids are also used. My daughter did have quite a reaction with the first treatment and was hospitalized to get it under control. The doctor then ordered more coverage of the steroids.
A VERY difficult nd trecherous path but we still have hope of knocking this down.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

The ability to decide on what path to take for treatment is difficult. I do not think that there has been a suitable dose to allow successful treatment at the 80 mg dosing. We did not see progress with Nina until there was 10 doses at 80 mg for 62 kg Nina. We actually saw additional improvement at 100 mg for 65 kg. This 1.5 mg/kg dosing was also important for Carol, Mario's wife. It does not occur in 2 weeks, but in 10-16 weeks. It should however, stop progression of the disease immediately. Any edema is probably due to the cancer cells dying. Do not give up. Depocyte is really hard on the brain. I am in the business of making these drugs, you want to use a monoclonal Antibody if at all possible.
Superior Paul

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hi Paul,
We sure did not want to go to this, but the doctor said it had increased along the spine all the way plus extra growths in the lumbar, thorax and several in the cerebellum. He said he was afraid it was going fast enough that it might get past his ability to handle it.
Hopefully we can keep adding the Herceptin and increase the herceptin as the doses of depocyt get further apart.
He said the herceptin with the topotecan was not working.
Thanks for the input.
Ev

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

My thoughts are with you and Susan. I think the dose was not strong enough for the Herceptin plus Topotecan, but the doctor is there and it is his job to be right.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Wish you luck Ev and Sue, thank Paul, I know you were so busy lately.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Last Thursday my wife had a seizure which was not strong, but could not go away. Had to take her to emergency and even with 20mg valium could not stop, well it took over 4 hours to control, but still she is having twitches in her hand, continuously. Looks like she has some damage now. A scan done yesterday resulted in that there are no brain hemorrhage and that no more tumors are visible except for the edema that she had. She is on 6mg steroids (dexametasone) and muscle relaxants (ativan and rivotril), plus 3000mg keppra and 300mg epanutin daily but still with these continuous twitches. Don't know what to do. Anyone has an idea?

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

i had stroke type symptons in 2010 that said was steroid related. prayers for continue healin Darita

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
Sending prayers too...hang in there.
Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
Not sure what to say about this. Our thoughts are with you and Carol. I wonder about the steroids issue as well. I think you are on the right track for treatment. I hope this is just a short setback.
Paul

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thanks all of you for the good wishes.
Fits nearly gone now, only slight ones once or twice a day, lasting less than a minute.
She is now on Keppra 2500mg daily, Epilim Chrono 800mg daily, Phenytoin 300mg (which should be reduced this week) and 9mg dexametasone.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Fits still on!!

Don't know what's wrong! neither do the docs!!

She is on 2000mg keppra, Epilum Chrono 2000mg, Phenytoin 300mg and still having slight fits 3 to 4 times a day, lasting a minute or less. Every time she moves slightly without cooling her head. But how come when the cancer is gone! Maybe scars from the past.
Strange and the brain cannot be explained.
Treatment of IT herceptin and IT hydrocotisone and Tykerb has been stopped for 4 weeks now.
Hope nothing goes bad.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

has she been evaluated by the neurology department? changes in MRI? What does Her EEG show?

Prayers for peace and healing

darita

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
Praying for you both daily. Is Carol able to be at home, or is she better monitored in hospital? How is she 'feeling' otherwise?

I imagine this is harder on you, than it is on her. My heart goes out to you.
Sending love and positive thoughts to you both across the many miles.
Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Last MRI showed positive results, but she had decreased steroids and this must have increased slightly the edema. Neorology specialist still not seen, trying to do it ASAP, in the mean time she is increasing the steroids again to try and stabilize to start again intrathecal. Thanks Denise and Darita.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

keep us posted , prayers and good thoughts for healing and answers.

Darita

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

The last complication that we had was a pulminary embolism!!
My wife is recovering from a very heavy one which nearly killed her last week, but now is stable and nearly cleared. What else can happen to her, God only knows. With this cancer you solve one problem and another props up very soon.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario and Paul,
Haven't seen an update from either of you for a while.
What news of your beautiful wives?

Sending love and prayers...hoping to hear from ou both soon!
Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hi Denise,
My wife is still doing quite well, but had some brain hemorrhage which resulted in restricted movement of her right arm. Claxane has been reduced after 6 weeks from the PE, it is now down to 40mg per day. Otherwise cancer is under control, edema is still present so most probably it will soon be irradiated locally to kill any remaining cancerous cells. She had restarted IT herceptin 4 weeks ago at 150mg again, after an absence of 7 weeks.

Will keep you posted.

Thanks for asking, Denise, how are you doing?

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario
So glad to read your update! Any idea from docs whether restricted movement in Carol's arm is likely to resolve over time? Is she right handed? All things considered, it sounds like she made out pretty well. Have the seizures resolved?

I'm doing well! Started Avastin to shrink the radiation necrosis...and so far, so good. It seems to be working. KNOCK WOOD! - Don't want to tempt the fates!
For the first time since January I've been able to start weaning from the decadron without the SEs coming back! As of yesterday, I'm down to 4mg/day. I haven't been on that low a dose since...well...I think it must have been last September...right after the GammaKnife. So, I bet you can guess...I'm thrilled with this progress!

All the best to both of you!
Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Great to hear you are doing so well.

Carol is right handed, but there is hope of full recovery, since this was only a contained hemorrhage, cause a small stroke. This needs about three more weeks to clear. IT herceptin is on hold from this week, till this is resolved.
Her seizures have stopped completely.

Wish you luck.
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

I am glad she is doing better, prayers to her and recovering her movements. God bless and prayers to you both.

Darita

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Carol had a WBRT last month due to the edema she had which could not go away with the herceptin. She is now recovering from the stroke she had, rehab exercises everyday. Intrathecal is on hold but we will soon restart it. No fits and recovery is a bit slow.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
I wish things were a little easier for Carol. You must both be emotionally exhausted.

Does WBRT stand for whole brain radiation? If so, how does that help with edema? We've been trying Avastin to reduce my edema (caused by radiation necrosis) but no one has ever mentioned WBR.

You're both in my prayers... hoping for easier days ahead
Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

My wife had a second stroke 5 weeks ago, but now recovery is going fast. She is close to start standing again. Understanding everything and communicating quite well.

Intrathecal herceptin is still on hold, only IV herceptin. Steroids are down to 2mg daily, with no fits recently.

She is doing physiotherapy, OT and speech therapy daily and hope to get her out from the rehab center by end of next month, to come home again after 4 months.

My advise is that intrathecal herceptin works but not on big lesions or a large edema. Radiation is needed on these before IT herceptin clears them completely. On 6 mm tumors IT herceptin works for sure but on a 2 cm edema it does not.

So any of you think that you can get away without doing radiation, think twice. The brain is such a delicate organ and you cannot risk to play with tumors in it for a long time. Strokes are a big risk to life besides that quality of life is reduced even after recovery.

My wife was advised to do radiation since October of last year but resisted it till 2 months ago. But I think it would have been much better if she did it before. 14 months with the edema in her brain were too long.

Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario,
You are both in my prayers every day. I know you're taking good care of Carol...please don't forget to look after yourself as well.

Praying, as always, for easier days ahead.
Denise

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Mario and Carol,
Our thoughts are with you and we are glad that progress is finally occuring at a faster rate. I am sorry that the IT Herceptin was not as as effective as it was with Nina. Toptecan was added at 0.4 mg with the IT Herceptin and that might have made the difference for our family. We have followed your struggles and hope that there is continued progress.

Paul and Nina

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Paul, you did local radiation before starting IT herceptin, we did not. On small tumors it worked but not on the 2cm edema. Otherwise IT herceptin cleared over 10 tumors of 7mm or less.

Topotecan might have helped too, but I think that not doing radiation on the edema for such a lengthy period was a big mistake and Carol paid the price! But it looks as though the radiation now cleared the edema for we are at 1mg steroid only going to zero this week. Next follows an MRI and most probably we restart IT herceptin by end of next month.

Thanks for all your help and support Paul and wish you and Nina all the best.

Thank you Denise for you support.

Regards
Mario

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hi,
I just joined and am fascinated. I have HER2+ leptomeningeal and probably brain mets, just discovered, very early. I've been able to put together Carol's story from Mario and have scattered useful tidbits from Paul but would love a nutshell diagnosis, treatment, result, prognosis timeline history of Nina. And Mario, Evlin, any details you can provide that would help persuade my doctor to try IT Herceptin? I sincerely hope everyone is continuing to enjoy relatively (it's all relative now isn't it?) good health. I don't have any edema and would like to go straight to IT Herc and skip WBRT but maybe you wouldn't agree? It's just that after being the hairless wonder, it came back curly, and I have this fabulous goofy hairdo that I'm loathe to lose. I hope you're still out there listening.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

kaiulanis,
This is a tough situation to be in. As Mario indicated, I think zapping the tumors locally and then introducing the Intrathecal Herceptin is probably the best method to do things. The results have been very promising so far.
I would have your doctor talk to Dr. Amal Melhem-Bertrandt at the Breast Cancer Center for MD Anderson Cancer Center in Houston Texas. There is ongoing work to show that IT Herceptin does remove the tumors in the brain and spine, but only when the Herceptin levels are higher than is being used for the Clinical Trial by Dr. Razier at Northwestern Hospital in Chicago (and Sloan Kettering in New York). I would ask for a Compassionate Use (or Compassionate Care) protocol to be started. This is done by having the doctor go to the Internal Review Board of the hospital. Once it passes there, the doctor goes to the drug company (Genentech/Roche in San Francisco) and they approve it, followed by the insurance company. Typically the IRB is the tough place, as Genentech and the insurance company will both approve this treatment. Start at 40 mg per week for four weeks, then go to 1.3 mg/kg of body weight. This will seem high, but clearing of the drug from the spinal fluid is very quick, with a half life of 36 hours or so. They can then follow the tumors being broken down in MRI scans every four weeks, follow the spinal fluid protein and glucose, and by the symptoms becoming less pronounced (walking, headaches, etc.). Let me know if I can do any more.
Paul

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Thank you you're the best! Unfortunately, or fortunately, I don't have any symptoms. I just figured my chances are better starting it earlier since it's apparently inevitable. Do the wheels have to be falling off the jalopy before they'll consider it, d'ya think? Pitching my doctor today. Thanks again for your help and all your trail-blazing. I hope your darling Nina is doing okay? Is she still doing maintenance IT Herceptin? NED? SE-free? I'm sure my doctor will ask.

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Nina is doing great. We went to once per two weeks for six months and are now at once per four weeks for the past year. She also does IV Herceptin once every three weeks.
NED in MRI scans, PET scan, no cancer cells in the Spinal fluid, with the protein and glucose in the normal range for the spinal fluid. There were no side effects, and steroids were not necessary. We hit the tumors in the spine with radiation before the first IT treatment, but no rad since then.
Nina walks 5 miles per day. She is on the computer, reading books, and helps her mother with her daily activities. She is able to drive, get on the plane to Houston for IT treatment, and make critical decisions on her own. She is looking at restarting work with either RN or Massage Therapy, as she has license in both. There is some pain in the lower back, legs, and some ankle areas, but this is minimal. In other words, she is normal.
I wish you have the same luck. We were very persuasive and knowledgeable, which certainly helped.

Paul

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Yay!!!! So so very happy to hear that she and you are doing well. I know what a hard journey this is. PS I'm from Telluride.

Kaiulani

Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
 

Hi Kaiulani and Paul,

Carol is still doing great, now she can talk very well and she is standing at last, even though she had 3 strokes this summer.
From the experience with the mistakes we did with my wife, I would irradiate the tumors and start IT herceptin as fast as possible, the more you delay the bigger are the chances of complications like my wife had. She has not done any intrathecal for the past 6 months and still all MRIs she did lately showed no signs of any tumors at all. Wish you luck. 1.5mg per kilo of IT Herceptin once weekly together with 50mg hydrocortisone seem to work on patients that Herceptin worked everywhere else except their brain.

Paul I am so glad Nina is still doing fine, good luck.
Mario