Treatment for Leptomeningeal Carcinomatosis

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March 21, 2012 at 4:56 pm  #7944    


Heelo. Im new to the forum. My father was diagnosed with nsclc back in 11/09. Since then, he has responded well to first line of tx. (Taxol, carboplatin, Avastin). Recently he underwent VATS surgery for a new tumor in his lung and after telling his doctor about some symptoms he has been having (numbness of lips and face, uneasy gait) he had an MRI that showed multiple brain mets and possible leptomeningeal carcinomatosis. He just finished 10 tx of WBR. Nausea, fatigue, and headaches could be side effects from the tx or symptoms of the disease. Hard to be sure. My issue is where do we go from here? His genetic tests show Tarceva would be a tx option, however i read about pulsed doses of tarceva on this site that both Dr. Weiss and Dr. West have tried with patients who have LC….how can I get my father to receive this tx? Will most doctors agree with trying this or does he have to find a clinical trial? Im so nervous and afraid his symptonpms will progress in the two weeks of waiting after his wbr…want to start something for him asap… any advice would help at this point…
Thank you tons,

March 22, 2012 at 11:06 pm  #8031    
GRACE Webmaster
GRACE Webmaster

This post had a corrupted forum header. It should be fixed now and allow replies.


March 23, 2012 at 4:45 am  #8048    
Dr West
Dr West

Dammit, this is now the third time I’ve tried to reply, so let’s hope this works after Mark’s fix.

Pulsed Tarceva (erlotinib) is just the same amount of full strength (150 mg daily) tablets as is given standardly, but given as four tablets once every four days instead. To my knowledge, it isn’t the subject of any significant clinical trial right now, and its availability would be based on just a prescription for regular Tarceva, as it would be written for many people with a previously treated advanced NSCLC as an FDA-approved treatment for that setting, but either specifically prescribed as 600 mg by mouth once every four days, or perhaps written in the standard daily format but with oral instruction for the patient to take it on a four tablets once every four days basis.

I should just clarify that while Dr. Weiss and I have each seen some success with it, as have several of our colleagues who know about and have tried this approach, it isn’t considered a clear standard or well-established treatment. Rather, I’d consider it an appealing possibility in a situation in which the treatment options have tended to be all too limited.

Good luck.

-Dr. West

March 23, 2012 at 6:56 am  #8056    

certain spring

Hallo Heather, I also tried to reply. I’m sorry your father has been through so much. WBR can be an effective treatment as I know from personal experience. Hopefully it will relieve at least some of his symptoms.
I also wanted to say, please don’t torture yourself about the time interval. Radiation to the brain goes on working for weeks, so your father is – in effect – having ongoing treatment. Very best to you and your father.

49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

March 23, 2012 at 12:33 pm  #8061    

Dr. Weiss

I also replied, but my post went zappo. Any rate, the upshot of my longer post is in line with Dr. West’s thinking. For patients with leptomeningeal disease, pulse dose tarceva is promising, but very far from textbook or even well validated. I also recommended considering a 2nd opinion, unless already done.

March 24, 2012 at 6:27 am  #8080    


Thank you all so much for your replies and help. We are getting two opinions…one from Sloan Kettering so I feel as if we are doing whatever we can. He also sees a holistic doctor and that has helped in the past we believe. He does everything right for himself. He is open to anything to live longer…

I just need to get a hold of ALL of his records so i can get them to the various offices before his appointments…quite honestly, the logistics of paperwork and reports have been the most frustrating part of this process. I’m seeing first hand how fractured our health care system is. But necessity is the mother of invention and i gphave a few ideas!

Again, I cant thank you enough for your support and input…this is an invaluable site.


March 24, 2012 at 6:53 am  #8081    


Also, I understand the idea behind the Tarceva…and the pulsed doses…and that it may not be an option (or at least the best option) for my dad right now…especially if no alteration is detected in the egfr.

Again, i cannot thank you enough!

April 18, 2012 at 8:31 am  #9135    



I am new to this forum. The site is informative and inspiring.

My mother is currently in stage IV LC with leptomeningeal spread, diagnosed originally at IIIB in 2009, non smoker, age 59. In the time between 2009 and now, she has had a lung resection, chemotherary with carbaplatin and docetaxil.

She has an EGFR mutation but not the one specific where the Tarceva studies have been done on.

She went into a clinical trial for Tarceva as a “preventative from reoccurrence”, but was taken off when her cancer metastisized to her pelvis. It was at the time that we discovered that she was getting placebo. This was in Nov 2011.

She was admitted to the hospital over 6 weeks ago (3/6/2012) as she started having a rapid decline in cognitive function, was tired all the time, couldn’t walk well, complained of dizziness, nausea, vomiting, and dramatic weight loss.

She started having seizures and was put into a drug induced coma. The doctors realized that she had hydrocephalus so she got a shunt, is on a tracheostomy, and a feeding tube.

She is currently getting intrathecal chemotherapy with MX. The radiation oncologists refuse to give her WBR.

Her doctor has only had two patients like her and I feel he is hesitant to try things due to lack of experience.

I have read about pulse tarceva and there are two amounts – 600mg/every 4 days or 1500mg/once a week. Are there any studies/ results/ anecdotal suggestions where one dosage yielded better results than the other? Also, would there be significant benefit to do WBR with intrathecal chemotherapy? I have read that the combination of both yields better outcomes. What complications should we look out for on the pulse tarceva?

Thank you very much

April 18, 2012 at 10:14 am  #9139    

Dr. Weiss

First, a focus on comfort should be considered first in patients with leptomeningeal carcinomatosis–there is no proven effective therapy and, with the exception of pulse-dose tarceva for patients with sensitizing EGFR mutations, I wouldn’t claim that there is even a promising idea for therapy.

I am not aware of any comparisons between the two tarceva regimens. In my practice, when I do consider this, I use the 600mg Q4D regimen, but that’s more based on experience than any passionate belief that one is superior to the other. I suspect that in the vast majority of situations where one of them would work, the other one would be equally likely to work also.

The major side effects of pulse dose tarceva are similar to daily tarceva, with rash and diarrhea being most common.

We typically avoid intrathecal chemo and radiation at the same time. When we employ both, typically they are done sequentially.

April 18, 2012 at 10:39 am  #9140    


Thank you so much for your quick reply.

My mom is unable to talk now as she has a tracheostomy but she doesn’t seem to in any pain. She usually grimaces if she is having some pain (ie. if we squeeze her toes).

We really do not want to give up on her and I know she would really love to see her second grandchild (6 months pregnant). She still has moments of clarity and communicates through signals and trying to write.

Have there been any studies on poly (ADP-ribose) polymerase (PARP) inhibitors or Lucanix?
I’ve also read about Celebrex /Tarceva combo and Tamoxifen/Tarceva- any information on that?

I sincerely that you for any information and your time.

April 18, 2012 at 3:14 pm  #9147    

certain spring

twong, I am terribly sorry to hear about your mother. The experience with the clinical trial sounds very tough, and now this. Whatever happens, please don’t feel you are “giving up on her” – anyone can tell that you are deeply concerned and committed to taking the best possible care of her. Best wishes to you and your mother.

49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

April 18, 2012 at 8:56 pm  #9156    
Dr West
Dr West

There’s really not a meaningful amount of information about any of the other novel approaches you mentioned, and I would consider none to be more promising than pulsed Tarceva, which is also not one that is so well established that it has become any kind of standard.

I would reiterate that leptomeningeal carcinomatosis represents cancer at its most aggressive and cruel, as well as frustrating for our great difficulty in fighting its ability to progress. I do think that it is often very appropriate to focus on a person’s comfort; this is not the same as giving up on someone and can often be the most help to offer a person in an unfair fight.

-Dr. West

April 19, 2012 at 6:55 am  #9176    


Thank you everyone for your responses. This site has brought me a lot of comfort, knowledge, reality, yet hope.

My mother doesn’t seem to be in any pain or suffering now, from what I can tell, just mostly sleepy. She has been bedridden in the hospital for 6 weeks though. She is getting IT MX but she seems to be tolerating it very well. She will get very tired right after her treatment but will come back around 3-4 days later. She has already had 2 weeks (4 doses) and is scheduled for 2 more weeks. The doctors don’t think it’s helping very much but based on my observation, she is able to stay awake, look at pictures, watch TV, follow simple commands, smile at people, and try to write. This is a marked improvement compared to her drug induced coma 4 weeks prior.

We have asked her oncologist about the pulse tarceva but he has never heard of it. I am wondering if she would suffer or be in any other pain if she were to start that regimen. Aside from cancer, my mother doesnt have any other health conditions (liver, kidneys, heart, lung all working fine).

I want her to be comfortable but she is a fighter and I know she would sacrifice and do anything for her family.

Thank you again.

April 19, 2012 at 9:10 am  #9179    


I had spoken to the doctors about doing pulse tarceva but they are unwilling to try.
She is getting intrathecal MX and they say that it is working because her cytology has come back negative. She also had a CT scan of her upper body on 4/18/2012 and they say that it has come back clear.

They were previously giving her IT MX 2x per week but want to cut down to 1x per week as a maintenance. I have read that IT MX is “works best” at 2x/week. She has been refused whole brain radiation.

The doctors also say that they have read that even Tarceva at 150mg daily dose can cross the blood brain barrier. This is contrary to what I have read and that is why there is reasoning for pulse Tarceva at 600mg/ every 4 days.

I am curious to know if anyone else has read that Tarceva can cross the BBB at 150mg doses?

Also, if her chemotherapy is “working”, would there be any rationale to do pulse Tarceva as well – she still has a lesion in her pelvis?

Please, any responses would be helpful.

April 19, 2012 at 11:36 am  #9187    

Dr. Weiss

Tarceva at standard dosing (150) indeed can cross the BBB and often see cancer control in the parenchyma (meat) of the brain at 150. However, the CSF (cerebrospinal fluid, where leptomeningeal disease happens) is harder for drugs to reach. The pulse regimen is based on the dose required to get tarceva into this space.

April 19, 2012 at 11:50 am  #9189    


Thank you Dr. Weiss.

Would there be any rationale to doing pulse Tarceva along with intrathecal chemo? Her doctors think chemo is working because her CSF cytology has come back negative.

April 19, 2012 at 12:12 pm  #9192    


Would there be any harm or “overtreatment” if she were to get pulse Tarceva along with intrathecal chemo?

April 19, 2012 at 12:37 pm  #9194    
catdander forum moderator
catdander forum moderator

Each of those treatments can be very difficult for the patient. I don’t think both would be offered someone who can’t communicate those wishes personally. I might be mistaken though.

I’m so sorry what your mom and family are going through and I know you want what’s best for her. Take care,

April 19, 2012 at 12:44 pm  #9197    


Thank you Janine.

My mom is currently getting intrathecal methotrexate. She seems to be tolerating it well, even her oncologist agreed. Other than being tired and sleepy after a treatment, she seems to really come around after 3-4 days. My concern is that the IT MTX isn’t really doing the job. Thats why I was wondering if we should consider combining pulse Tarceva with the chemo.

If the combination of both would make her miserable or suffer, then I would not want to put her through that.

April 19, 2012 at 12:52 pm  #9199    
catdander forum moderator
catdander forum moderator

Of course and I really am speaking without even knowing particulars about the 2 drugs given this way. And you’re really here to find out what the specialist think (it’s why I came to Grace).
Best to your mom,

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