Pulsed Erlotinib treatment for potential metastasis to the spinal fluid - 1255336

beefcrab
Posts:4

Hi all, thank you for making this website available. As a passive observer it has been an incredible resource to have when going through such a situation. I am now in need for some advice for my mother’s situation.

My mother’s profile
• Age: 65
• 2010 – diagnosed with Lung Adenocarcinoma, stage 4, bone met to the t6 spine.

Treatment:
• Palliative radiotherapy to the lungs and t6 spine (localised radiotherapy)
• Tested for EGFR mutation. Result: POSITIVE
• Was administered for Tarceva and has shown great response to the treatment. CT scans have revealed that there is no change/growth to the T6 spinal bone met (scan performed in 2013).

September 2012 – February 2013
She has been experiencing chronic headaches. Over time the pain has slowly escalated and as of right now she is on morphine, currently being tritated to work out the optimal dose. Over the course of those months, the oncologist could not determine the cause of these headaches, initial brain MRI shows that there shouldn not be anything cancerous that would induce such chronic pain. The scan in February however revealed that there are new nodules in the lungs and a small single nodule in the brain. They have determined that the growth of these new lesions is slow, she is still on tarceva despite the growth.

Story continues in next post:

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Reply # - April 2, 2013, 03:40 PM

beefcrab
Posts: 4

February 2010 – Now
Last week she experienced a fall where she lost sensation to her legs. This happened twice and was admitted to hospital. The oncologist mentioned that based on the symptoms she has been experiencing, the cancer may have spread to the spinal fluid thus affecting her CNS. A MRI is being done to confirm this and the results are pending. She has been put on Dexamethasone to reduce inflammation and swelling, this is at the same time she was put on the tritated morphine regime. Her pain is now relatively well managed but it is hard to say whether it is due to the Steroids or the morphine.

My Two Concerns:
The standard treatment is WBR and radiotherapy to the spine, the oncologist mentioned that the MRI may not pick up the contrast to determine that it is spinal fluid metastasis. My concern is that they are still planning to go ahead with the WBR and spinal treatment even if the MRI cannot confirm this. This concern may be muted if the MRI does come back as positive but this also leads to the next concern…

With mum being EGFR positive and with the fairly recent discussions and publications of “Pulsed” erlotinib, my mother seems like a sensible candidate to try pulsed erlotinib treatment before committing to WBR and spinal therapy if it is confirmed that the cancer has spread to the spinal fluid. This is in New Zealand where we have a fantastic public health system, however pulsed erlotinib is definitely not standard treatment here.

How can I bring this approach up to the oncologist without getting shot down completely? Previously we had a discussion of whether mum should continue tarceva despite the slow progression of the lungs. We were sitting on the side that she should continue (playing it safe to avoid disease flare), but his professional opinion is that there is no point in continuing.

Reply # - April 2, 2013, 04:28 PM

JimC
Posts: 2753

Hi Hector,

I'm sorry to hear of your mum's symptoms. As you can see from my profile below, my wife's cancer spread to her spinal fluid (leptomeningeal carcinomatosis), leading to a host of neurological symptoms. That spread was initially suspected on a brain MRI, but the only definitive diagnostic test for LC is a spinal tap in which the spinal fluid is withdrawn and tested for the presence of cancer cells. But even a negative result on one tap isn't enough to rule LC out; that takes three negative taps before it's concluded that there is no LC. In my wife's case, the suspicious MRI combined with her symptoms was enough to make the diagnosis.

If your mum is already taking the standard 150 mg/day dose of Tarceva, switching to a pulsed regimen should not be a problem...it's the same number of pills, just taken at a different frequency (600 mg every four days). The idea is to increase the concentration of the drug which reaches the spinal fluid. You can read about this regimen here:

http://cancergrace.org/lung/2010/01/31/an-effective-treatment-for-some-…

http://cancergrace.org/lung/tag/pulsed-tarceva/

http://cancergrace.org/topic/is-pulsed-dose-tarceva-still-an-option#pos…

Perhaps if you bring this information to the attention of your mum's oncologist he will be more receptive to the idea. Even if not, there is nothing to stop you from switching to the pulsed dosing schedule on your own, even if changing your dosage is not something that is usually recommended.

Best wishes for success with the treatment chosen.

JimC
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Reply # - April 2, 2013, 08:22 PM

Dr West
Posts: 4735

I'm sorry your mother is facing this dilemma. I would just underscore that pulsed Tarceva, while an idea that has gained a bit of traction, isn't so overwhelmingly effective or commonly used that it is anything close to a standard of care in this situation -- at least not yet. Still, as Jim noted, it's still the same number of pills in the same month period, so some oncologists may be more inclined to accept this unfamiliar approach when it doesn't entail a novel treatment or even net increase in dose. Finally, it may help to bring some of the posts from other oncologists such as the ones by myself and Dr. Weiss -- many times, doctors are more receptive to the input of other physicians, especially if the other docs have an expertise in the field, when there isn't a clear standard approach to pursue.

Good luck.

-Dr. West

Reply # - April 3, 2013, 06:26 AM

dr. weiss
Posts: 206

Pulsed dose erlotinib for EGFR mutated NSCLC to the spinal fluid (otherwise known as leptomeningeal disease or LMD) is absolutely not yet a proven standard of care. However, I have personally seen it work well in both improving quality of life and duration of life in this situation and I am aware, in addition to the published case series, of at least another dozen patients for whom the approach has had some efficacy. It's not a terribly toxic or risky thing to do, so once LMD has been proven, I routinely consider it in practice.

Reply # - April 3, 2013, 10:56 PM

beefcrab
Posts: 4

Thank you all for the replies. The MRI report came back today and it showed no evidence of LMD. However it has been agreed among the specialists that based on the symptoms, the fact the steroids are working and the initial LP result showing minute traces of cancerous cells, that my mother has LMD.

WBR is still the recommended course of action. However they do not object to pulse tarceva to be administered alongside with it. Dr West and Dr Weiss, for the patients that you know who have tried pulse tarceva for LMD. Would you recommend wbr alongside pulse erlotinib?

It has been difficult to accept her diagnosis since her neurological cognition has not deteriorated but the picture that has been painted has made it too big dismiss.

Reply # - April 4, 2013, 03:54 PM

Dr West
Posts: 4735

I don't believe that there is enough experience with pulsed Tarceva and concurrent WBR in this situation to make that kind of recommendation (it's very possible it has never been tried in a single patient before), and I wouldn't feel comfortable making any kind of medical recommendation like that for someone who isn't my patient. I also suspect that Dr. Weiss would be disinclined to offer a direct suggestion of how to proceed, and even if he were inclined to, I wouldn't want him to do it on GRACE, for legal reasons. I hope you understand the predicament.

Good luck.

-Dr. West

Reply # - April 5, 2013, 12:02 AM

laya d.
Posts: 714

Docs:

This is the first time I recall reading a recommendation for whole brain radiation in the context of metastatic LMC from lung cancer. Am I mistaken about this or is WBR generally prescribed in the US for this complication?

Laya

Reply # - April 5, 2013, 12:45 AM

certain spring
Posts: 762

Hallo Laya - in fact the use of WBR in leptomeningeal disease has been mentioned here before, in December. It was news to me too. Dr West wrote:
"Just as a small point of clarification, WBR is certainly an approach that is tried in some people with leptomeningeal carcinomatosis, but it’s not a therapy that has enjoyed clear success in that setting, in contrast with its indication in treatment of multifocal brain metastases."
http://cancergrace.org/topic/is-pulsed-dose-tarceva-still-an-option
I got the impression that it is absolutely not standard in the US.
Hector, if it's at all encouraging, there is some evidence that for people with the EGFR mutation, Tarceva and radiation interact in a good way when given for brain mets:
http://www.ncbi.nlm.nih.gov/pubmed/22167408
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3098020/
I'd like to point out that leptomeningeal disease is difficult to diagnose (going by my own experience and what several GRACE doctors have said over the years). It's obviously very encouraging that your mother has no neurological symptoms. I hope the radiation helps with the spine. All best.

Reply # - April 5, 2013, 06:36 PM

Dr West
Posts: 4735

Just to corroborate, certain spring is correct on all counts. WBR is definitely not standard for LMC, though it's sometimes done, and LMC is also notoriously difficult to diagnose conclusively. Ambiguity of imaging and clinical findings is more the rule than the exception.

-Dr. West

Reply # - May 21, 2013, 08:09 PM

Dr West
Posts: 4735

There is no standard of care for cancer in the spinal fluid in the setting of lung cancer. The most common course of action is likely a focus on symptom management and no specific anti-cancer treatment, since no therapy has an established value. Radiation is sometimes done, chemotherapy like methotrexate is sometimes given intrathecally (directly into the cerebrospinal fluid), sometimes chemo drugs are given IV or by mouth in hopes of getting into the brain, or patients may receive a targeted therapy like Tarceva (erlotinib) that can have activity in the brain -- but none of these is considered a standard of care.

-Dr. West

Reply # - May 22, 2013, 05:37 AM

chebird
Posts: 104

Thanks Dr. West,

I was afraid of that.

Vicente's oncologist and neurosurgeon are pretty sure it's there due to the location of the tumor :( The oncologist was going to do more homework to see what could be done. He talked about doing intrathecally chemo using methotretrexate, but said he didn't think it worked for lc. He said pulsed Tarceva woudn't work since that's where the progression is (already on Tarceva for egfr+).

So I guess now we need to think of QOL.

I know you can't comment on personal cases, but I will update on what is done for the sake of medical curiosity.

Blessings,

Holly

Reply # - May 22, 2013, 11:44 AM

catdander
Posts:

Hi Holly, I'm so sad to hear this news. From what I gather from reading all these posts on Grace is that pulsed tarceva is an option, though not a "standard tx" for lepto for those who are EGFR +. It's taken differently from daily doses of 150mg and so is thought to reach to the spinal fluid. Dr. Weiss describes it here,
http://cancergrace.org/lung/tag/pulsed-tarceva/

Keeping you and Vicente in my thoughts,
Janine

Reply # - May 23, 2013, 05:21 AM

chebird
Posts: 104

Thanks Layla and Jim.

I am sorry about what both of you went through. You are saints to still be here helping.

Here's the situation. He has no signs of anything wrong with CNS. The only cancer we know of is the intradural tumor at T9. The oncologist wants to be aggressive because he says it has to be in the fluid. I'm going to show the Dr the article written by Dr. Weise (SP?) about the pulsed Tarceva.

I can't find any information on preventing this except for pulsed Tarceva which the Dr won't do. We are going to Banner MD Anderson for a 2nd opinion in a few weeks.

Apparently people who have been dx with lepto are dx due to symptoms first, so this is different. He's had pain from the T12 tumor which was removed since last year. Maybe this DID get there via blood.

Blessings,

Holly

Reply # - May 23, 2013, 02:50 PM

beefcrab
Posts: 4

Very sorry to hear about your situation chebird.

My mother passed away 3 weeks ago due to Lepto spread. At the time of writing this topic her condition was pretty good aside from the fact that she had difficulty walking. Two weeks afterwards, her headaches intensified and started experiencing seizures, it was clear that she was experiencing neurological decline. When it got to that point pulsed tarceva was just too late to administer and keeping her comfortable became the primary focus.

When discussing pulse tarceva with the medical team, they were not opposed to it(some say that it can complement with WBR). However it was not something they would medically endorse as a stand alone treatment given the fact she could have had lepto for months due to her headaches since September last year, which would indicate that the spread in the CNS is not sensitive to erlotinib.

I guess another way to approach the doctors is to ask if there is any harm in trying this given the situation. The doctors did not stop us from trying pulsed Tarceva, my mother just decided not to take it immediately because of the influence from other members of family (we are a Chinese family who hold string beliefs in traditional herbal medicine and strangely enough... Vitamin C).

Stay strong Holly, but more importantly look after yourself and treasure these moments with Vicente.

Reply # - May 23, 2013, 06:57 PM

chebird
Posts: 104

Thank you, Hector.

I am so sorry about your mom. This lepto appears to take people quickly.

Vicente's oncologist's nurse called today and said there is nothing more that he can do for him. Vicente has excellent performance status; his only issue is nerve damage from the tumor at T12.

I made an appt with the oncologist anyway for this Tuesday. I am going to bring the articles on pulsed Tarceva that I found here. It would be better than no treatment.

We also have an appt at Banner Anderson on 6/6 for a 2nd opinion. I just can't accept that nothing can be done when he feels fine. What a nightmare.

Blessings,

Holly

Reply # - May 23, 2013, 07:59 PM

Dr West
Posts: 4735

At this point, it's all just a matter of best judgment, since we can't point to actual solid evidence. We rely on a rationale, a case report or two, a careful look at options or lack of alternative options, style/interpretation from the doc, and patient/caregiver input about risk aversion, etc.

Good luck with the second opinion.

-Dr. West

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