Valerie Harper Treatment

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September 20, 2013 at 1:26 pm  #1259389    

cards7up

Though I didn’t see the interview last night others have and questioned the treatment. It showed the IV bag of alimta at 2000mg and also mentioned that she took Tarceva. In a previous interview, her doctors stated that her treatment is experimental. How can they treat one person experimentally with this treatment, doesn’t it have to be approved as in a clinical trial? I would love to know how her energy is so high after having received that amount of alimta. I had normal weight appropriate carbo/alimta and the fatigue for me was overwhelming.
I’m happy she’s doing so well and I do understand that her lepto is only in the brain and not the spine. Does this treatment sound like something that might get approved for others with lepto?
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

September 20, 2013 at 3:29 pm  #1259390    
JimC Forum Moderator
JimC Forum Moderator

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 20, 2013 at 4:07 pm  #1259392    
Dr West
Dr West

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

September 20, 2013 at 5:57 pm  #1259394    
JimC Forum Moderator
JimC Forum Moderator

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)


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 20, 2013 at 6:04 pm  #1259395    

double trouble

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

September 20, 2013 at 6:05 pm  #1259396    
JimC Forum Moderator
JimC Forum Moderator

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 20, 2013 at 6:27 pm  #1259397    

double trouble

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

September 20, 2013 at 6:32 pm  #1259398    
JimC Forum Moderator
JimC Forum Moderator

Debra,

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

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 20, 2013 at 7:13 pm  #1259400    
Dr West
Dr West

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

September 21, 2013 at 6:48 am  #1259406    

cards7up

You’re funny too Dr. West! A clock is right at least twice a day! LOL! That was my feeling too, that this was more of an over call then actual LMC. It never mentions in the meninges but did say not in the spinal fluid. So this was disconcerting. I agree with you Dr. West, they’re making a media circus out of something that affects so many others who are looking for help. Thanks all for your great responses. Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

September 21, 2013 at 5:58 pm  #1259411    

Sherry

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.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

September 21, 2013 at 6:24 pm  #1259412    

njliu

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


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 Iressa, great response. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor, 10/13 focal radiation, 1/14 PET Scan:Tumor Resolution, continue Iressa, 6/14 PET shows flare up at same primary. 9/14 CT stable/MRI reappearance of brain mets, 4/15 stable brain mets, 5/15 increase in SUV and slight pleural effusion. 6/15 Afatinib + Cetuximab

September 22, 2013 at 9:17 am  #1259418    
Dr West
Dr West

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

September 22, 2013 at 11:53 pm  #1259423    

Jazz

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


Non-smoker, Dx 6/06 Stage IV Adeno. EGFR+ (exon 19 del), T790m+. Trial: 2cyc Carbo/Doce/Avastin + 2 w/Gem 8 – 12/06; Avastin maint. 1 – 4/07. Alimta + Tarceva 5/07 – 2/09. NED to 8/09. Tarceva 150 9/09-5/11, SBRT/XRS to lung & spine met 2/11. Trial MK2206 (AKT inhibitor) + Tarceva 5 – 12/11. Afatinib+cetuximab trial 2/12 -2/13. LL collapsed. 1/13 PET – new bone & adrenal mets. 4 cyc Carbo-Gem-Tarceva 5/13. Brain MRI 10/13 – clear. Lost Dad to LC 5/13.Anti-PDL1@Angeles Clinic?

September 23, 2013 at 7:32 pm  #1259434    
Dr West
Dr West

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

-Dr. West

September 23, 2013 at 10:37 pm  #1259442    

bob4beth

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


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

September 24, 2013 at 4:29 am  #1259443    

double trouble

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

September 24, 2013 at 4:36 am  #1259445    
JimC Forum Moderator
JimC Forum Moderator

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


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 24, 2013 at 4:56 am  #1259448    

cards7up

Bob, I am so sorry to hear about Beth. Wishing you all comfort during this trying time. Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

September 24, 2013 at 5:46 am  #1259449    

chebird

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


- Husband: 7/11, 8+ cm Pancoast into T1, T2 and 3 ribs. – Fall 2011 chem/rads, partial response with tumor shrinking to 5.5 cm. – EGFR + Tarceva started 10/11 – 1/12- 4/13 Happy with NED – 4/13 intradural mets to spine and head. – 5/13-7/13 radiation to lower half of spine and 2 spots in head. Uncontrolled pain. – Mom: VATS for 1a 7/09. Mets to liver. stage 1V 7/13. Chemo. – Step-mom: dx 11/12 squamous stage 111. chem/rads.
9/27/13 Dx multiple LMC tumors throughout spine

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