Leptomeningeal Metastases - Valerie Harper - 1258905

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belize2
Leptomeningeal Metastases - Valerie Harper - 1258905

Did anyone hear what chemo drugs Valerie Harper is taking It'?s amazing that she's still here and doing so well! I'm wondering if oncologists are administering whatever drug she's getting because I don't hear anything but a grim prognosis for this disease with survival in weeks. Obviously something is working for her

catdander
Reply To: Leptomeningeal Metastases – Valerie Harper

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!

sherrys
Reply To: Leptomeningeal Metastases – Valerie Harper

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

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

Thank you for posting the link. I am so furious at the doctors who treated my husband (or not), especially his arrogant ass of an oncologist who wouldn't give him chemo when he received the leptomeningeal metastases diagnosis. He forced us to waste time finding another doctor, pushing for immediate radiation which didn't do anything and delayed the chemo - it was a friggen fiasco and nothing eases my mind. This kind of story fuels the anger inside of me - don't get me wrong, I am very happy for anyone who receives treatment and does so well. I'm angry because this opportunity was never given to my husband when it should have. How do you ever get over something like this? It's been almost 9 months and I'm sick inside :(

Dr West
Reply To: Leptomeningeal Metastases – Valerie Harper

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

carrot
Reply To: Leptomeningeal Metastases – Valerie Harper

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.

catdander
Reply To: Leptomeningeal Metastases – Valerie Harper

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

Dr West
Reply To: Leptomeningeal Metastases – Valerie Harper

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

carrot
Reply To: Leptomeningeal Metastases – Valerie Harper

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.

carrot
Reply To: Leptomeningeal Metastases – Valerie Harper

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.

catdander
Reply To: Leptomeningeal Metastases – Valerie Harper

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

Dr West
Reply To: Leptomeningeal Metastases – Valerie Harper

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

Dr. West, thank you for your prompt response. I'm sorry but still am not clear as to how a patient becomes eligible for additional treatment so he has the opportunity to be the miracle patient who responds contrary to the statistics. Every patient out there wants to be this miracle patient. What is the criteria? Is this just at the discretion of a physician? Thank you

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

Dr. West, I wanted to mention after re-reading your response to me that I understand that there has been very little success treating LMC but if a physician isn't willing to try a treatment, how the heck are they going to know whether it will work? Not all patients respond to chemo the same way and if no physician was ever willing to say 'okay, let's try this and see what happens', you'd never have those patients like Valerie Harper surviving beyond the statistics, right? It is critical for physicians to try treatments. Everyone is trying to survive long enough that maybe a breakthrough treatment will be announced. In my personal situation, we don't even know for certain if my husband had LMC. They diagnosed with an MRI but no spinal fluid was drawn for confirmation. Radiation didn't do anything that we could tell and at the time my husband was suddenly unable to walk and he went to the ER, the neurologist on call said pinched nerves and surgery might help (huh?) In retrospect, I don't even know if the LMC diagnosis was correct. As I said before, this whole journey after first line chemo was an absolute fiasco and I keep thinking time will heal - but it doesn't. I get more and more upset every time I read about anybody surviving longer after getting the additional treatments my husband wanted but couldn't have because his doctor said 'no' and it's 100% because of one doctor who choreographed my husband's early demise. I'm starting to think my only way of getting over this is total isolation on some island in the middle of nowhere with no internet connection and no accessibility EVER to information on LC, especially SCLC. Sorry for the rant.

catdander
Reply To: Leptomeningeal Metastases – Valerie Harper

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

catdander
Reply To: Leptomeningeal Metastases – Valerie Harper

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?curr...

Dr West
Reply To: Leptomeningeal Metastases – Valerie Harper

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.)

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Dr West
Reply To: Leptomeningeal Metastases – Valerie Harper

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

JimC
Reply To: Leptomeningeal Metastases – Valerie Harper

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)

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

JimC
Reply To: Leptomeningeal Metastases – Valerie Harper

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

neilb
Reply To: Leptomeningeal Metastases – Valerie Harper

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

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

I am very thankful to all of you who have provided information and your thoughts on treatment. Obviously, I have a lot of frustration over the treatment and so many regrets about not handling things differently. I understand about quality of life vs. quantity and that there are all kinds of variables and also that the biology of cancer is different. Since they don't test for any specifics with regard to SCLC there's no targeted therapy. I understand that's why patients can all respond differently to a treatment - no one knows what is going to work until you try. This is where my frustration comes in. My husbands doctors could barely read protocol, let alone even attempt to think "outside the box". So, as briefly as possible, I'll summarize what happened with him. What I will tell you is that even when he was diagnosed with SCLC, he was walking every day in the park 1-2 miles. This continued throughout chemo which he tolerated beautifully and throughout radiation. He stopped walking when he lost his ability to a month before he died. Up until then his ECOG was 0-1 all throughout.

Jan. 2012 - chest cold and coughing - 2 rounds of antibiotics not working. X-ray ordered and shows mass.

Feb. 2012 - CT follows and then bronchoscopy confirming SCLC. Typical scans, bone, pelvis and brain all show NO metastases so we think limited (yippee!). Right before chemo, oncologist decides quite unexpectedly to do a PET scan. Bone mets everywhere (in retrospect, was it really bone mets or arthritis - no biopsy). Jim never had any bone pain or anything indication of problems elsewhere.

Mar. 2012 - Chemo starts - carbo/etoposide. 6 cycles. half-way through, doc does scan and tumor shrinking. Completes chemo June 28 - tumor shrunk by about 60% so partial responder. Jim tolerated chemo beautifully - barely any side effects and continued walking in park daily, sometimes up to 4 miles. He asked to have 2 more cycles of chemo because he feels great. She says no

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

Second part - Sorry for length and I'm backing up in time a bit cause I forgot some things.

May 2012 - oncologist starts with monthly zometta shots.

June 2012 - CT scan after chemo shows bone mets improved and nothing else showing up. We also check into Seneca Valley clinical trial and go for initial visit after big hassle with his uncooperative oncologist who gives wrong medical info to trial coordinator and then tells him to go to PCP for referral.

July 2012 - visit with new onc because original onc on maternity leave. He takes my husband OFF zometta. (Huh?, in restrospect, this should have been a clue as to how this onc would treat him)

Aug 2012 - 15 PCI treatments - these are worse than chemo for my husband. Mild headaches are relieved with plain old aspirin but he keeps walking every day.

Sept 2012 - need CT scan for clinical trial - shows progression. Tumor 7.5 cm so stupid oncologist says no chemo. Radiologist calls and said "remember when I talked about salvage radiation? Now is the time". Radiologist knew chemo was the way to go cause medical notes say he asked but bc onc won't help, he's backed into a corner so he says ok. My husband's symptoms were not as bad when he wsa initially diagnosed and chemo would have helped him.

Oct 2012 - thoracic radiation ends, my husband has some hip pain. Radiologist orders scan. Leptomeningeal diagnosis and they tell him weeks to live. Onc says I'm not giving any more chemo and basically abandons all treatment - he never did anything but take my husband off medicine or deny treatment. I don't like to use the word 'hate' but that's what my feeling is towards him. Worse physician ever. So what do they recommend, spinal radiation but they can't do the entire spine because he already had thoracic radiation which goes through to the spine so lumbar is all that's available. They say 'call hospice'. He does but sounds so good, the woman says "are you sure you're supposed to be calling?

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

Sorry, you can ban me from this site afterwards.

Oct 2012 - mid to end - 10 lumbar radiation treatments. Can't do entire spine bc of thoracic radiation? Confirms that he shd have had chemo, not thoracic rad. We ask about chemi and onc says I'm not treating you anymore, go get a 2nd opinion. He abandons Jim.

Nov 2012 - Jim is having some leg weakness which gets worse and he can't walk by Nov. 17. Decides to pursue chemo with another onc - yes, time wasted finding someone, going for visit and now trmt has to wait til radiation effects are over so nothing til Dec.

Dec 2012 - chemo on the 4th and 11th. Week of 11th, Jim talks but sometimes words don't make sense. Dec 12th, we watch a movie and he starts to tear up and says how sad the situation is. Dec. 13th, he feelsl like he's going crazy and doesn't want to take any more meds (thankfully, very little pain). Finally takes 1 xanac and better. Dec. 14th home health comes and he's chatty and fine. Dec. 15th aide comes so I can run errands. Jim has him write down his 20 favorite Beatles songs and asks if he wants to play guitar sometime. Watch tv in evening and he has a glazed look in his eyes but the love he has for me comes through bc he reaches over and gives me a kiss :) Dec. 16, watch Bears game and Jim sleeps almost the entire time, little food and water. Dec. 17th terminal restlessness during the middle of the night and morning (I have no idea what's going on). Call hospice, they come, finally he settles down and passes away at 5:45. I am stunned with the rapid progression.

That's my summary - do any of you agree with this treatment? Radiation screwed up everything - if he'd been given chemo we would have been happy that onc was trying. I just want the onc to explain why what they did was the best for Jim

laya d.
Reply To: Leptomeningeal Metastases – Valerie Harper

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

Dr West
Reply To: Leptomeningeal Metastases – Valerie Harper

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

JimC
Reply To: Leptomeningeal Metastases – Valerie Harper

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

Thank you all again or your input and advice. More counseling is in order for me so I can let go of all of this, the memories of which haunt me all the time and it's emotionally exhausting. This has been a life altering journey that has taught me at lot, good and bad. To all of you fighting LC, do your own research for the type of LC you have, read this website and inspire.com and remember you will always be your own best advocate. 100% of people with LC don't fit the statistics so keep the faith and demand treatment for as long as there is treatment available and you can handle it and want it. Best of luck to all of you

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

OK, I've read all the responses which I appreciate. I don't expect anyone, least of all the moderators, to second guess a physician's treatment recommendation. I already know my husband's treatment was crappy without anyone confirming for me. I've waited and waited for time to pass to see if I feel the same and I do. What I've also realized is that treatment for the 2 SCLC stages comes down to physician attitude. Same chemo for both stages with the only difference that for ext. stage they don't do concurrent radiation and I ask myself why? There was a clinical trial done that showed extended survival for ext. stage SCLC when given chemo/concurrent radiation just like they do for limited stage so I'm baffled as to why this isn't standard protocol. Given the grim prognosis, makes no sense to me that an oncologist wouldn't pull out all the stops and do both regardless of staging - maybe one of the moderators can explain the rationale behind saving radiation for ext. stage SCLC patients - save for what? I even asked my husband's radiologist about doing both based on this trial and he said "oh not, let's save radiation for later". Big Mistake!.
Bottom line, a physician shouldn't make unilateral decisions about treatment without patient discussion or deny add'l lines of chemo when add'l chemo is protocol and given by a majority of physicians plus patient tolerates well and wants. Please explain how an oncologist is "doing no harm" by refusing to give a second line of chemo when many patients receive up to 5 lines? Are these oncologists considered quacks by their peers? They shouldn't be - their patients are still alive. My husband's oncologist was playing God and manipulating treatment to reach his intended timeframe for survival which was easy. No treatment = quicker death. My husband's oncologist would have given his relatives more than one line of chemo.

belize2
Reply To: Leptomeningeal Metastases – Valerie Harper

Also, he had great insurance. I'm under the impression that people with Medicare/Medicaid are subject to different protocol when it comes to treatment which I never realized until recently - sad.

Dr West
Reply To: Leptomeningeal Metastases – Valerie Harper

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

JimC
Reply To: Leptomeningeal Metastases – Valerie Harper

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-metas...

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bobradinsky
Reply To: Leptomeningeal Metastases – Valerie Harper

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

catdander
Reply To: Leptomeningeal Metastases – Valerie Harper

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

carrot
Revisiting this topic, and

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.

JimC
carrot,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bobradinsky
Carrot

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

carrot
Thanks JimC and Bob. Today is

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