Leptomeningeal Metastases - Valerie Harper - 1258905

Hi belize2, thanks for sharing the great news. I tracked back to the original post and found this, the most accurate discussion on the situation, a video with Ms Harper and her doctor.

http://www.today.com/video/today/52872968#52872968

I don't know that anyone could give a better explanation of what's going on than her doctor and Ms Harper. He says that the response is very rare and is still only a matter of time. She's receiving chemo as a standard care and drinks tea and has acupuncture on the alternative side. I don't think you can look at it as what she's doing that others aren't but more that the cancer is responding better than other's who have had similar treatment.

It's like my husband who is defying the odds with NED. I wouldn't suggest he or I or the doctors are doing anything out of the ordinary. We are very lucky still and no one deserves the luck more or less than the other person.

I'm very happy for Ms Harper that she gets this extra time but I'm also glad that she is putting it into the public eye.

Watch the video y'all, she's an inspiration!

Wow, that's really inspiring. Thanks for sharing the link.

Belize2,

I understand your anger, but as was shared in the story, her situation is remarkable. There is no standard treatment for leptomeningeal carcinomatosis (LMC) in lung cancer, and the majority of oncologists, both general oncologists and lung cancer specialists alike, have had little or no success in treating it, when it has been tried. The idea of not treating it in your husband was not, I believe, intended to deprive him of opportunities. The fact is that there are remarkable outlier cases of everything, and I have even seen patients who have been called as having LMC who happened to do well for months or a year or more without any specific treatment against the LMC. In fact, now that people are getting very high resolution MRI scans far more often, we're seeing a LOT of patients called out as having LMC, and I and many other lung cancer docs have concluded that some of these are just over-calls, or at least that the disease can follow a more variable course.

I'm afraid that there's likely to be nothing that I or anyone can say or do that will mitigate your anger, but I would be extremely wary about taking anything offered by the mass media at face value. Not necessarily that it's meant to be manipulative (though a good story wouldn't necessarily let the truth get in the way), but the fact is that the people who do these stories don't know ANYTHING about medicine. Starting with the comment that LMC is very rare, that's actually not an accurate statement, so I would not presume that Valerie Harper is doing well because she's on a miraculous treatment for LMC -- I suspect whatever she's doing is something that has been studied and found to be not very effective in a much larger number of people with LMC from lung cancer. But some patients will just happen to do very well, perhaps because there's such a tendency to call LMC on scans now that it doesn't always follow the expected path of the clinical version of the complication.

-Dr. West

Nearly every article I read on leptomeningeal metastasis mentions 4-6 week survival without treatment. My son seems to be another outlier case for both his primary cancer and the LMC. He was diagnosed with LMC in January this year, and has had no treatment for it. His primary cancer is osteosarcoma of the spine, which has now metastased to multiple spots on his spine, ribs, pelvis and both legs. The primary cancer in his case is described by his doctors as slow-growing and 'smouldering'. The prognosis for spinal osteosarcoma is much worse than that for osteosarcoma of the limbs. But my son is now well past 5years since diagnosis. We are very grateful to still have him here despite the dire prognosis of both the osteosarcoma and the LMC.

Hi carrot, thanks for sharing your story and wow'z congratulations for your son and you!
Janine

Bear in mind also that there can be differences in the behavior of LMC depending on the behavior of the underlying cancer.

One thing I say over and over again here is that anything is possible with a particular case and particular cancer, so I don't mean to imply that there should be an absolute dogma. However, I think it's more of an error to read about every extreme outlier case and operate as if that should be expected. This would be like reading about a big lottery winner and presuming that's a good life plan for making enough money to live for the rest of your life. How many thousands or millions of non-lottery winners weren't written about in the paper? How many thousands of people with LMC who didn't live for years aren't writing in here now with their story?

All sorts of things are possible, but we can't guide our expectations based on that.

-Dr. West

Thanks, Janine. To clarify, my son has undergone multiple chemos, radiation and surgeries over the years for his primary cancer. He was NED for a year or so back in 2009, but since mid-2010, all treatment has been aimed at local control of specific tumour sites. The LMC has not been treated because of the prevalence of non-LMC tumours. His situation continues to worsen and he has now been paralysed since mid-February. BUT - we do still have him here all these years later, despite expectations.

Thanks, Dr West, our messages crossed. Yes, I agree that one should never treat on the basis of the rosiest of expectations. It is only in retrospect that we can realise how much our son has exceeded the odds.

carrot, I can't imagine what your family has gone through in the years since your son's diagnosis. I didn't expect that it has been anything short of devastating. My husband has been through a rather difficult bout with his cancer which has left him emaciated and in not an insignificant amount of pain. However he has spent the last 5 days on the roof doing repairs in what seems like the first consecutive days without rain in months. He's been NED for almost 1 1/2 years and without treatment for over a year. My message is one of happiness for for having your dear son as I am happy to have my dear husband.

Going into the life of cancer it's difficult not to want to treat as if you may win the lottery (using Dr. West's analogy). I think with luck we get time and experience to appreciate the moments when our loved ones feel good and are living life even if that means not treating.

I'm thrilled to get to live my life with my husband, for however long. If, when we have to make decisions about treatment I hope we'll be strong enough to keep the balance in favor of my husband's well being.

There's no doubt we have to make complicated decisions in cancer treatment. Unfortunately this is coupled with the urgency, real or not we feel in implementing a plan. Together us laypeople are left not having a good understanding of what's happening leaving us with the great fear that everything that should be done isn't being done. We are all lucky to have found Grace and I'm lucky to have had the time to learn and digest enough information that I feel prepared (intellectually) for what may come. Because that's really only a small part of the cancer puzzle.

I've run on enough,
Janine

For the record, I feel it's always a little off to say that anyone dealing with a cancer has won a lottery, and I don't think it's quite right to say something like "if you're going to have cancer, you're lucky to have this kind!".

I realize that having an outlier cancer is just a little less crappy and shouldn't really be likened to the good fortune of winning the lottery.

-Dr. West

belize, I'm very sorry for the direction your grief has gone. I'm a firm believer in letting people grieve their own way. And since you've put this out there for all to read I'm guessing you really are looking for answers. And I, being one to handle my husband's cancer with as much reason and understanding as I can get (along with antidepressants and chocolate) have a very different view of your husband's care. Let me explain.

I know I'm lucky to have my husband here today and that makes me not in your position. But I have witnessed a good share of death and dying, including uncomfortable decisions we made for my mom that help with the peace I feel about her going.
I can only imagine the pain of losing a husband. My mom lost my dad and I'll never forget the long nights I listened to her cry and times I tried to comfort her. I won't pretend to know what decisions I'd really make or how I'd feel about the decisions my husband and his doctor would agree upon. But...

Your understanding of the situation has several pitfalls. First of all treatments and drugs are tested in clinical trials for how helpful their likely to be compared to how harmful they may be (the goal here being longevity with quality of life). The reason there haven't been trials or if so they haven't turned into standard treatment is they are most often more harmful than helpful. Most likely the reason your husband's doc wouldn't treat.

The reason my husband is NED isn't because he's getting better treatment than others. It's because of the biology of his cancer. The reason Ms Harper is doing better than most is perhaps she doesn't have lepto or if she does it's acting much more indolently than most any others, or it's more responsive to chemo than others. But you're right there's not info out there to pinpoint the answer. She's lucky.

to be continued

I just saw your second to your last post. Doctors take an oath part of which promises to do no harm. Or something like that. The fact is treating lepto at least as far as it being lung cancer is there is more chance of doing harm than the chance of doing good. That's about as simple as it gets.

The decisions are at the discretion of the doctor and hopefully the patient. What insurance or the health system will pay is usually determined by what has been shown to be helpful though usually through research sometimes through what the doctor suggest as long as she/he has a rep of making good decisions. Note that lung cancer is notoriously underfunded in research and almost entirely up the the drug developers to fund their own research.

There comes a time when treating with anticancer drugs causes more harm than good. I believe this is an individual spot. A balance that each doctor refers to when making treatment plans. There comes a time when comfort care alone is best. It seems like it's a moving target that a doctor and patient collaborate on. Too there is a time when a doctor hopefully won't treat for the good of the patient.

I'll leave you with this very unique article written by a doctor/writer for the New Yorker a year or so ago. It may be helpful. It's entitled "Letting Go"
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?cur…

Yes, as Janine noted the "first rule of medicine" is primum non nocere, which basically means, "first, do no harm". It is a recognition that for the first several centuries and, probably more accurately, millenia of some form of medicine, doctors flailed around with almost no effective treatment and just confabulated treatments that were occasionally beneficial, often completely ineffective, and all too often potentially harmful. Since the human body can heal itself often without the meddling detrimental input from well-meaning (or potentially just profit-driven) doctors with inadequate treatments, the first rule of medicine to avoid doing harmful treatments remains a critical central tenet.

Medicine turned a major corner with the introduction of penicillin and other antibiotics, followed by dialysis, organ transplants, cardiac bypass surgery, and many other developments, and by the 50s and 60s, medicine was being promoted by the media and the medical community as the miraculous deliverers of a cure for nearly everything soon. This was kind of the overly optimistic view that spawned the ideas shown in the Jetsons cartoons that we'll be flying cars and have robots serving us all dinner by now. Medicine has been about as successful as that utopian view -- definitely progress, but far from able to cure everything, even though there's a widespread overly simplistic view by many people that we should definitely be able to cure everything by now, since we put a man on the moon, etc. But putting a man on the moon was a cakewalk compared to curing cancer.

It's simply not feasible to try everything a patient might decide they want to try just to see if it works. For one thing, the health care system can't afford to do completely unproven treatments that patients are only eager to receive when someone else pays for them. Beyond that, it's still not a doctor's obligation to do therapies more likely to harm than help someone.

(cont.)

At the end of the day, I don't want to deny someone a treatment just because of a questionable call on imaging. I'm saying that if someone has something being noted to look like LMC and they've also got the symptoms and clinical decline that match with that diagnosis, it's very reasonable to conclude you're dealing with LMC. On the other hand, if a scan report mentions a concern about LMC in someone doing very well, I don't presume that the person necessarily has it. Even if we find cancer cells in the cerebrospinal fluid, it's not clear what to do with this information. An asymptomatic patient doing very well may continue to do well for a long time after that, whether they receive aggressive treatment or not. They may even go from being asymptomatic and doing well to being destroyed by a treatment of unknown/unproven benefit that ends up hurting them, shortening their survival and given only to treat a lab or imaging finding.

It's possible that Valerie Harper is doing well because of the treatment she's getting for LMC, but it's also quite possible that her diagnosis of LMC was based on an overcall from an imaging result or that she just happens to have a very indolent disease that is an outlier.

Again, I'm afraid that there's nothing that anyone can do or say that will mitigate your anger, but that doesn't mean that we can realistically do every treatment any patient might decide they want, whether backed by evidence or not, just to ensure that they don't miss any remote opportunity.

-Dr. West

belize2,

I'm very sorry about your husband's passing, and I understand your anger. Having lost my wife to NSCLC, in part due to LMC, I understand what it is like to lose your life partner.

I don't know the details of your husband's cancer progression, but in my wife's case not only did she develop LMC and recurrent brain metastases, but the cancer was progressing elsewhere in her body, particularly in the liver and bones. As a result, we were faced with the question of which to treat - disease in the central nervous system or the rest of the body. Treatments which might help control the disease in one area were very unlikely to help in the other. Our oncologist, with whom we had great confidence, recommended no further treatment. My wife did not want to cease treatments, and since the symptoms of LMC were getting worse quickly, we opted to try pulsed Tarceva. That regimen caused only further misery for her and had no effect on her CNS symptoms, while of course the cancer continued to progress in other parts of her body.

Unfortunately for most patients with LMC or rapidly progressing cancer elsewhere in the body (or in her case, both), treatment at that point is very rarely helpful and usually only makes their final days more difficult. In fact, in my wife's case she was relieved when we ceased treatment, and even though that came only a few days before she passed, those final days were more comfortable for her. If we had an opportunity to make that decision again, without hesitation I can say that my choice would be to cease treatment.

(continued)

Had we treated the cancer in her liver and bones instead, it is possible that she might have lived a bit longer. But one of the consequences of that would have been a further deterioration in the CNS. That would have been terrible, because her progressing LMC symptoms caused both of us a great deal of pain and heartache.

I realize that part of your anger is due to the fact that you do not feel you had the opportunity to make such a decision. All I can say is that in such a situation, with full knowledge of the facts and the consequences of the choice made, it is a very difficult decision and always subject to second-guessing after the fact. The very small chance of success of further treatment must be weighed against the damage caused by that treatment, and the effect it will have on those final days.

Every situation is different, so I can't say that further chemo should not have been tried. All I can do is offer my own perspective and hope that it helps your understanding.

My sincere condolences and wishes for peace and comfort for you and your family.

JimC
Forum moderator

Jim: I wish GRACE had a "like" button you could click on comments!
Best,
Neil

No banning necessary belize2. Many of us on this site are heartbroken for our own reasons and for reasons related to what other members of our GRACE family have gone through or are going through. I'm very very sorry that you have lost your husband and that you have lived through this nightmare. Lung cancer is an incredibly cruel disease.

Be well,
Laya

I'm truly sorry about what you're going through, but our purpose here isn't to provide commentary on the detailed management of someone who isn't our patient. I wouldn't want any of the GRACE faculty to get into the details of management of someone in this setting.

-Dr. West

belize2,

I understand your anger and frustration and grief. I'm sorry, but no one here can tell you whether your husband received appropriate treatment. In my wife's case, we thought her oncologist was absolutely wonderful, not just in terms of technical expertise but in his caring manner and willingness to listen. Nevertheless, almost two years after her passing there are times I still second guess some of our treatment choices, even though at the time we were doing the best we could. But over time, I have also come to realize that I need to accept that things were going to happen the way they happened and that I am unable to change the course of events. It is without doubt an extremely difficult process.

Please understand that although we can't engage in the second guessing of your husband's care, this is a caring community of fellow travelers who will support you in any other way we can.

JimC
Forum moderator

Belize2,

I appreciate that you are angry, but I wouldn't want people to have the mistaken impression that your perspective should be uncontested. I have no personal stake in your husband's care. I did not lose money or profit from anything that happened.

It is completely untrue that most patients with SCLC get 5 lines of therapy -- almost none do, and it is completely wrong for you to conclude that they did well BECAUSE they received 5 lines of therapy. Anyone with a SCLC who is still doing well after 3-4 lines of prior therapy has a remarkably unusual course of disease and has a form of SCLC that is so indolent it doesn't represent typical SCLC.

I can guarantee that whatever trial you're referring to that suggested a benefit from radiation for extensive SCLC was not a large phase III trial with people who have SCLC widely metastatic to liver, bone, and brain. In other words, you're looking at a trial of unusual, selected patients who didn't have the usual degree of spread of SCLC. It also wasn't a trial large enough to say that, when comparing two groups of similar patients, the ones who received radiation did significantly better than those who did not.

There is a very real increased toxicity from concurrent chemo/radiation. It is very possible to die from it -- about 5-7% of people even in clinical trials of concurrent chemo/radiation in curable stage III NSCLC die from the treatment. Far, far more develop serious, miserable short or long-term side effects from it. That is regrettable but arguably justifiable when there's a chance for cure. It is NOT something that should be cavalierly done just because a patient decides they want extremely aggressive treatment that is of dubious benefit.

You may decide you want coronary artery bypass surgery just because you want one, but that doesn't mean a doctor needs to do it or society should pay for it.

-Dr. West

Whether the diagnosis is extensive stage SCLC or metastatic NSCLC, radiation tends to be used only to address an immediate need such as reduction of pain or situations in which a tumor is pressing on a vital structure. Since the cancer has spread throughout the body, local therapy such as surgery or radiation causes a patient negative effects such as pain without addressing the overall problem of the cancer cells present elsewhere. In general, experience has shown that it does not improve survival. Since a combination of radiation and chemo tends to be very debilitating, the net effect is to diminish quality of life without adding to its length.

There is a GRACE FAQ on this subject here: http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

I understand your anger and your grief, but posting complaints about the care your husband received is beyond the purpose for which GRACE was created.

JimC
Forum moderator

Belize2

My wife passed last month from LMC which resulted from NSCLC and she was EGFR + so she was able to pulse dose Taeceva which has been shown to penetrate the blood-brain barrier. In spite of everything we did which included pulsing beyond recommended dosages she died 5 months after the dx. I too was angry, but my anger was directed toward the insurance company who would not approve or pay for dosages beyond 30 tablets per month. We were using 48.

I know little about SCLC except it tends to be very agressive and I do not believe it responds to Tarceva or other targeted therapies that pierce the blood-brain barrier. It appears to me, and I am purely a layman who has experienced first hand the ravages of LMC, that your onc had no chemotherapy to offer your husband that had been proven in trials or thru past practice to reach the cancer in the CNS. Following this logic any chemo that he or she may have prescribed may merely have been for the sake of just doing something and sometimes that can do more harm than good.

I feel terrible for you having lost your spouse. I know how aweful that feels. I am also worried for you because your anger is unresolved and if not treated can result in serious depression and other physical ailments.

Forget Valerie Harper and the other outliers. I don't know the stats but the vast majority of people dx with LMC do not survive. Celebrate that your husband was able to take his walks and have some quality of life darn close to the end. Try to put aside your anger and channel your emotions into something positive. I know it's easier said than done but if you do not you are in danger of making yourself sick.

I pray that you ultimately find some peace and happiness.

Bob

Bob, you're a very strong and caring man to come online and help others going through the same terrible ordeals you went through with you good wife. She was very lucky to have you.
Janine

Revisiting this topic, and just wanted to update my son's status; he passed away in Feb. 2014, 13 months after his LMC diagnosis and nearly 6 years after his osteosarcoma diagnosis.

carrot,

I am very sorry to hear of your beloved son's passing. I'm certain that he was comforted by your love and support, and I am glad that you had as much time with him as you did after his diagnosis. I wish you peace and comfort.

JimC
Forum moderator

Carrot

I am very sorry to learn of your son's passing. He sure put up a brave fight and serves as an inspiration for so many others. :Please accept my sincerest condolences.

Bob

Thanks JimC and Bob. Today is his 2nd anniversary of passing. His story is here http://wheresbrennan.wordpress.com