Valerie Harper Treatment - 1259389

Hi Judy,

As long as a drug is FDA approved (for something), if he or she has good reason to suspect it may work a doctor can ethically prescribe it for a patient, even if it hasn't been approved for that specific disease or condition. And that's the same for varying dosages. For example, that's how the idea of pulsing Tarceva started...individual oncologists tried a new idea. The usual problem is insurance coverage; investigative regimens are usually not covered.

As far as applying it to other patients with lepto, I'm sure other doctors may consider it and it could gain some traction.

JimC
Forum moderator

It would be helpful, however, if the case were presented in a more systematic fashion than being suggested by a few passing camera shots. Also, because there are outlier cases for just about everything, it would be remarkably more compelling to see a uniform approach demonstrated as effective in more than a single anecdotal case. We don't know if another 999 patients tried this and did very poorly.

I haven't reviewed the details of her case, and I don't know if she was significantly symptomatic from leptomeningeal carcinomatosis (LMC), but I was at a meeting today in which all of the expert around the table agreed that we're seeing a lot of people's scans reported as demonstrating LMC that have no symptoms or very subtle symptoms that beg the question of whether there are many patients out there being said to have LMC based on an over-call. If she perked up from being bed-bound and dropping a lot of weight, that's far more compelling for a real reversal due to treatment vs. doing well after an over-called case of possible LMC.

I didn't see the interview, so perhaps someone can clarify whether her LMC was diagnosed based on cancer cells in her cerebrospinal fluid in the setting of a rapid decline that reversed on treatment, or whether she had MRI findings and no symptoms of LMC, which may actually be associated with doing very well with or without specific treatment for LMC.

-Dr. West

Lisa and I just watched the Valerie Harper interview. For the most part it focused on how she was dealing with her LMC diagnosis in January. There was very little information from a medical perspective. At no point was there any discussion of how LMC was diagnosed, although near the end of the program there were two close up screen shots of comparative brain MRIs. In the first (in a meeting with her oncologist), the two images were not comparable, so it was impossible to discern any change from one to the other. Later, her neuro-oncologist displayed two images. In the earlier scan, he pointed to an irregular white area which he described as a "mass", and pointed out that it was not visible in the latest scan. He said that she seemed to be getting close to "remission", but there was no discussion of LMC or how he could know whether there were cancer cells in the CSF at the time of the current consultation.

The specifics of her treatments were not revealed, although as Judy noted she was shown receiving an Alimta infusion, and the bag said 2000 mg, and at another point her oncologist was writing down a schedule of Tarceva doses, saying that on one particular date she would take 8 pills (listed as 150 mg on his note to her) and he indicated that they would be gradually increasing that.

At no point in the program was there any mention of any symptoms typical of LMC, except for some headaches which came and went on an irregular basis. (Apparently last December she was suffering from headaches, which led to the January diagnosis). She also mentioned that at one point she had lost five pounds, but then she began to gain weight which she attributed quite logically to the Decadron she was taking. Although in Ms. Harper's case I have only the limited information provided in the media, having witnessed the symptoms of LMC first-hand and read about those suffered by other GRACE members or their loved ones, an overcall seems entirely possible.

(continued)

They never mentioned CSF positivity. They did show two consecutive scans. They pointed to a "white area" that decreased in interval size in the brain. It looked more like brain mets than lepto to my very untrained eye.
She mentioned steroids (and weight gain) which might be helping her with her energy level.

The program was very nonspecific and cloudy in terms of real medical details, and I don't think she herself really gets it completely. But she does get that she is beyond a cure, and her attitude is terrific. She did go to Washington and work towards more awareness and funding specifically for lung cancer. They did say they thought this was progression of her lung cancer. So, better than the first bit of media output.

I'm with you guys, thinking that the lepto is an overcall, but I hope the show did some good. I thought it was well done.
Debra

Of course, no one expects accurate or in depth medical reporting in this context. The program's failings in that regard take nothing away from the fact that Ms. Harper, given a diagnosis of LMC (erroneously called a "very rare condition") with a bleak prognosis, has shown great strength and an admirably positive and hopeful attitude. In that she can be seen as an example to emulate, but there just isn't enough information to draw a conclusion that her treatment regimen has been effective against LMC.

JimC
Forum moderator

Wish I had said that. :-D You're so smart.
Debra

Debra,

I've been called a smart guy before, but it's usually not a compliment! lol

JimC
Forum moderator

You guys are funny. :wink:

Thanks for the edification. I agree that the show is an uplifting story. My concern with stories like this is that it leads to the overly generous conclusion that doing an unproven aggressive intervention is the cause for a miraculously great outcome that people will then demand without any meaningful evidence beyond an anecdotal report. Of course, the problem is that even a broken clock is right twice a day: sometimes it's just a coincidence that a person got an unproven aggressive intervention and also did well, even if that's despite and not because of the intervention (I see this all the time with people getting major surgery for a small, indolent lung cancer that looks like it might be a real threat in 30-40 years, but not likely before then).

I'm happy for Valerie Harper doing so well, regardless of the cause, but I take the role of disseminating information about cancer very seriously and feel that it's a disservice when mass media reach a huge audience but don't understand enough to really portray the complexity of a situation accurately. I don't mean to castigate the producers...it's just that even if they mean it to be a heartwarming puff piece, it can be harmful if it leads to dozens or hundreds of people to demand something that may actually be harmful, especially if some (?many) of these people actually just have LMC as an overcall.

-Dr. West

There are also articles out there that I have read that say she battled lung cancer and is now also battling brain cancer. I wish they would get the facts correct before they put this information out there.

Thanks everyone for this conversation. It gives all those that did not watch the show a good summary plus an objective commentary.
While diagnosis of LMC based on brain MRI images only without confirmation from spinal tap is difficult and error prone, may I ask if similar brain mets diagnosis based on scan images only could as likely to overcall?
NJ

No, but my question would be whether they were treated with systemic therapy alone or also gamma knife or whole brain radiation therapy, in which case the local therapy would be extremely likely to improve the brain metastases. Even if no radiation was given, we actually know that some systemic therapies, including both EGFR inhibitors and chemo, can lead to responses of brain metastases -- I've actually written posts about both EGFR inhibitors and chemo for brain mets in the past.

-Dr. West

In the spring, prior to start of tx, Valerie and her docs (Dr Natale & the neuro-oncologist) were on the show The Doctors. At that time she stated she had symptoms similar to a stroke, where her face went numb and she couldn't feel anything/control facial muscles - during a rehearsal in NY. She also experienced a sensation as if wearing a tight belt or band around her waist. Those symptoms led to getting MRI's and other imaging. I don't recall mention of lumbar punctures and unfortunately I've deleted the recording :( I recall a fairly detailed explanation by Dr Natale of what LMC is, using a diagram to show the meninges. However, since it's tv and supposed to be hopeful, they didn't go into why tx so often fails and what sort of multi-pronged therapies might be used to treat her.

What I've always found baffling is how they came up with the "three months to live" thing with LMC. We all know how quickly it can take someone (a month seems more realistic).

So yeah, 8 Tarceva tablets per pulse (time intervals not mentioned) alternated w/"mega doses" of Alimta (2000mg, time intervals unknown). And she's laid out for at least three days after each cycle. Plus the Chinese herbal tea her acupuncturist prescribes. More power to her, and am impressed she went to Congress to kick them in the butt diplomatically!

Jazz

Thanks for the far more detailed perspective! That sounds more suggestive of real LMC.

-Dr. West

I really wish I had seen the Valerie Harper show on TV because I am sort of mistified somewhat by what I read on the internet be her supposal remission. She surely must be an over-call or an outlier, so in some respects it may be giving false hope to others dx with LMC. As some of you may recall from my previous posts my wife who has metastatic NSCLC/EFGR + started having headaches in May and a spinal puncture revealed LMC. She was told at the time it could be weeks or months. Around the same time as the headaches she was having gait and balance issues, memory and cognitive decline, incontinence, nausea and fatigue. We immediately started pulsing 1500 mg of Tarceva and did see some improvement. By the middle of July her symptoms were gradually increasing again so we went all out (beyond FDA recommendations) and began pulsing 900 mg twice weekly and added Alimta every 3 weeks along with folic acid daily and dexamethasone before anf after the infusion. We had several weeks of stability but by August her neurological symptoms increased considerably - notable difficulty swallowing and extreme weakness and fatigue. Now it's September and she has been hospitalized since Sept 13 declining rapidly. Friday Sept 20 she was scheduled to go home on Hospice but she had a seizure, is unable to eat or drink unconscious except for occasionally opening her eyes for a few moments. With some luck I will take her to a dedicated Hospice center tomorrow. Her IV will be discontinued and we will shower her with love and affection for as long as possible. She has fought this for 5 months but LMC has finally gotten the best of her, our family and friends.

Maybe Beth represents the other extreme of what LMC can do, but somehow, as horrible as this has been, I really think it is more typical of what LMC is about. Her oncologist told her that she did much better than some of his other patients. I am happy for Valerie. She should consider herself a very lucky girl. Bob

Bob, my heart is aching. What a difficult time. You will be in my thoughts. You and your wife are inspiring with your courage and your loving and realistic attitude. Please know you have many supporters here.
Debra

Bob,

Like Debra, my heart just aches for you as well. Your wife's symptoms sound very similar to those of my wife, so I understand just how difficult this is for you. My thoughts, as well as those of your entire GRACE family, will be with you at this time. My hope is for peace and comfort for you, your wife, and your family.

JimC
Forum moderator

Bob, I admire your fortitude and the love you have for Beth. It is indeed heartbreaking when we try and try, and they get worse no matter what we do. My prayers are with you both.

Holly

Bob, I'm so sorry to hear about Beth and what this cruel disease has done to her and to your family. You will continue to be in my thoughts.

For those of us who missed the Valerie Harper interview in March on The Doctors, here is the youtube video clip:

The Doctors: "Valerie Harper talks about her battle with terminal brain cancer", 42 minutes. http://www.youtube.com/watch?v=iBCdUaom6Po

In my earlier post, I posted the youtube interview with Valerie Harper:
The Doctors: "Valerie Harper talks about her battle with terminal brain cancer", 42 minutes. http://www.youtube.com/watch?v=iBCdUaom6Po

The following two video segments contain medical descriptions of what Valerie Harper has and the treatment she's undergoing: 17:20-22:15 and 32:10-37:30

I agree with Dr West, it is difficult to make any conclusions without more information. It is very unusual to have sudden LMC over 4 years after curative treatment for lung cancer.
In hindsight, one might wonder if her symptoms and imaging were due to a temporary inflammatory or viral process, like encephalitis. These non-cancerous processes can cause inflammation in the meninges on MRI, which can potentially be interpreted as a cancer. Without a tissue or fluid biopsy, we may never know.
Nonetheless, I think it is an uplifting story and shows that there is room for hope, no matter how grim the situation. God bless her, and hope she continues to be free of cancer.

Bob,

I am very sorry to hear of your wife's rapid decline. All I can do is wish peace and comfort in this difficult time...

Lisa