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Tagged: harper, leptomeningeal carcinomatosis
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| Author | Posts |
| March 6, 2013 at 9:00 am #1254512 | |
 laya d. |
It sadly is being reported that Actress Valerie Harper has “terminal brain cancer,” i.e., leptomeningeal carcinomatosis. At the very bottom of the article, however, it states that Ms. Harper was diagnosed with lung cancer in 2009. The way this article reads to a regular person, it seems as though Ms. Harper has suffered from two separate types of cancer – - rather than lung cancer having unfortunately spread to the outer layer of her brain. For whatever reason, this sloppy reporting made me a little upset today. Here’s the article: http://todayentertainment.today.com/_news/2013/03/06/17208312-valerie-harper-tvs-rhoda-diagnosed-with-terminal-brain-cancer?lite 1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken. |
| March 6, 2013 at 9:29 am #1254513 | |
 catdander forum moderator |
That’s very sad. My mom and I were great fans of Rhoda and Mary back in the day. At any rate very sad to know. Love you Laya! catdander’s husband: |
| March 6, 2013 at 11:44 am #1254516 | |
 marisa93 |
Very sad news indeed as we all know what cancer is capapble of. Laya, it bothers Jim the same way to read “sloppy reporting”. And Janine, you are so right that denial is a “wonderful thing”! I’m sure some of that helped me to get through Mark’s illness. I do like to take any opportunity I find to educate people now though about the differences of seperate cancers versus spread. Take care everyone, Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace |
| March 6, 2013 at 1:10 pm #1254518 | |
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catdander forum moderator |
I just read the link Laya posted. That makes me so annoyed its down right wrong. Not just confusing like my previous sentence. I’m impressed with Ms Harpers wish to bring her illness public so to educate the public. That’s a brave move. catdander’s husband: |
| March 6, 2013 at 2:14 pm #1254520 | |
 Dr West |
I read the same thing this morning and thought about tweeting about it with a clarification. I suspect it’s sloppy reporting, as it’s typical for people to think that a lung cancer metastatic to bone is “bone cancer”, etc. I wouldn’t presume that it’s an attempt to minimize the diagnosis of lung cancer. I don’t know if we should be reassured that it’s just journalistic ignorance, but I suspect that’s the genesis for the inaccuracy of reporting. -Dr. West Howard (Jack) West, MD Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor. |
| March 7, 2013 at 9:55 am #1254529 | |
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laya d. |
Well. . .Dr. West just advised that Tori Whitney from TV’s “Inside Edition” just contacted him and they’re interested in doing education on leptomeningeal carcinomatosis in the context of Valerie Harper’s diagnosis. They want to be accurate about what it is, so they are learning about it from GRACE (hurray). Tori also wants to speak with people who have this complication or were close with people who did. So, Dr. West has asked that if any of our members fall into these categories, and they are comfortable speaking to a reporter, to please call Tori at 212-817-5544. They’re hoping to do this story ASAP. Laya 1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken. |
| March 7, 2013 at 10:11 am #1254530 | |
 dbrock |
Thanks Laya! I was racing to note the same thing on this thread. As an aside, I spoke with her also and she is very nice, easy to talk to. And in my mind, the more we talk about these things – as hard as they are – the more recognition they get, and the closer we get to funding research, as well as helping with well-deserved recognition for this wonderful website. So if you are comfortable with giving your story, please give her a call. Operations Manager for GRACE. I came to GRACE after my best friend was diagnosed with lung cancer. She passed on July 31, 2010, after she showed all of us how to live. She lives on in her family and friends, and we all hold her memory close. |
| March 7, 2013 at 10:50 am #1254531 | |
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catdander forum moderator |
OK, I’ve just become a big fan of Inside Edition. Not because they will probably note Grace in the piece (though as Denise said good for Grace) but because they want to be accurate. It’s time to get lung cancer out of the closet. I’m going to look for a post or maybe it was a comment on a blog post. It was a conversation about how many people don’t want it be known that they have lung cancer because of the stigmatism that goes along with. So instead of saying so and so has lung cancer they say so and so has cancer. It’s been shown that this doesn’t happen with other cancers. Come on, we know there are lots of things people do everyday that can cause death so why should it be that smoking, one of the most addictive habits known, and lung cancer get swept under the rug. Not to mention all of those who never smoked. Does anyone know the comments I’m talking about? It included a resource with a list of examples, famous people written up about their cancer with the word lung left out. catdander’s husband: |
| March 7, 2013 at 10:59 am #1254532 | |
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catdander forum moderator |
OK, that was easy enough I answered my own question. Dr. West wrote a blog post on the subject when Paul Newman Died. The list is in the comment section. catdander’s husband: |
| March 7, 2013 at 11:36 am #1254533 | |
 double trouble |
After I had read Laya’s post about this story, I was watching NBC Nightly News with MY Brian Williams (I watch him every night right before PBS News Hour). They reported that Valerie Harper said she had a very rare brain cancer, and that she had battled lung cancer in 2009. During the report they just couldn’t resist the opportunity to show a photo of her with a cigarette in her mouth. I was crushed. I won’t fault them so much for reporting the story the way it was given to them, but showing that photo was a cheap shot, and that kind of thing really only serves to undermine the efforts of the lung cancer community to raise awareness and funding for research. http://www.nbcnews.com/video/nightly-news/51074361/#51074361 I’ve read the speculation above about why they may have chosen to report it this way, and thought that maybe Ms. Harper or her publicists prefer not to deal with the fallout from admitting to lung cancer. If that is the case, what a shame that is. With her celebrity, she has the opportunity to shine a light on lung cancer and could shout out the statistics that people need to hear in order to understand the magnitude of the need for funding and research. Not to mention her opportunity to honor the staggering number of people who get struck down by this devastating disease. I’m so happy to hear that Ms. Whitney wants to accurately report the story. I hope she is able to do so in a way that will make the need for heightened awareness the focus. And I also hope that Dr. West and GRACE are represented with the dignity they deserve. With much love and respect, 09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib |
| March 7, 2013 at 1:57 pm #1254537 | |
|
double trouble |
I found this article by People, further explaining Ms. Harper’s disease… But as the television icon, 73, reveals in this week’s PEOPLE, she is now fighting cancer again – and this time it is an even more formidable foe. On Jan. 15 she received a diagnosis of leptomeningeal carcinomatosis, a rare condition that occurs when cancer cells spread into the fluid-filled membrane – known as the meninges – surrounding the brain. The incurable disease, which accounts for less than 2% of all cancers, “comes on quickly and progresses quickly,” says Harper’s oncologist, Dr. Ronald Natale, director of the Lung Cancer Research Program at Cedars-Sinai Medical Center in Los Angeles. It can prove fatal in as few as three months. “This is a really complicated condition,” says Dr. Jeremy Rudnick, Harper’s neuro-oncologist. “The spinal fluid is a collection of fluid that’s being circulated [through the brain] kind of like a sink. The fluid itself is growing cancer cells so they are multiplying in there. Those cells start to coat the brain.” Because of the difficulty of getting chemotherapy drugs into the meninges, there are “limitations” in treating the condition, says Dr. Rudnick. “You have a train that’s moving 100 miles per hour, and what we’re doing is slowing down the train to five or 10 miles per hour [using chemotherapy drugs],” says Dr. Rudnick. The first symptoms of the disease often include seizures, blurry vision and severe headaches, along with “a belt-like sensation” across the midsection, says Dr. Rudnick. Harper first started experiencing the strange sensation last August, but an initial round of tests did not detect the condition. After experiencing numbness in her jaw during rehearsals for her one-woman show Looped on Jan. 11, Harper was hospitalized for more tests. 09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib |
| March 7, 2013 at 10:04 pm #1254542 | |
|
double trouble |
A third spinal tap finally revealed cancer cells had spread into her spinal fluid. Although Harper is undergoing chemotherapy to try and slow the disease’s progress, she is realistic about her odds. Ultimately, “the total burden of cancer gets to such a high volume that the body sort of begins to shut down,” says Dr. Natale. By sharing her diagnosis, Harper hopes to shed light on the rare condition. Receiving the news initially, “I was stunned,” she says. “And in the next minute I thought, ‘This could draw more attention to cancer research.’ I think there’s an opportunity to help people.” They just don’t want to call this lung cancer.I think that’s a shame. Debra 09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib |
| March 9, 2013 at 11:30 am #1254575 | |
 aunttootsie001 |
Wishing her the Best! Hopefully the Chemo can successfully extend her life with hopes of not to much loss of quality of Life! God Bless Her! Changed MD Dr’s 06/11 New MD ordered XRay because of chronic cough. X-ray showed a Mass LLL 06/30/11Pet Scan confirmed Mass (lymph Nodes didn’t light up) 07/19/11 Needle Biopsy Adenocarcinoma Stage 1a or 1b 08/10/11 scheduled Surgery (Canceled because of uninary infection) 08/29/11 lobectomy total lower Left Lobe removed + 6 Lymph nodes 10/20/11 first Chemo 11/10/11. 01/12 rads x 30 finished Mar 7. 10/12 reacurance PF. 11/28/12 start Xalkori 250mg/ reduced 200mg |
| March 9, 2013 at 4:55 pm #1254580 | |
 JimC Forum Moderator |
An update to Laya’s post: On Thursday evening I called Tori Whitney and left a message telling her that I would be willing to talk to her about my wife’s leptomeningeal carcinomatosis (LC), but she must have already gathered whatever information she was seeking since I did not receive a call back. I didn’t see the broadcast program, but on their website Inside Edition posted the story of a breast cancer patient who had developed LC a year ago. On the plus side, the article states that “Valerie Harper’s brain cancer is believed to have resulted from her lung cancer”; on the down side they persist in calling it “brain cancer”. Also, for further information about the disease they provide a link to the Chris Elliott Fund, an organization which seeks funds for research on Glioblastoma Brain Tumors, certainly a worthy cause but not the lung cancer which afflicts Valerie Harper and desperately needs research funding. You can read the story here: http://www.insideedition.com/headlines/5958-brain-cancer-survivor-offers-hope-for-valerie-harper JimC Wife 51 never smoker 7/08-Dx NSCLC pleural eff |
| March 9, 2013 at 7:57 pm #1254591 | |
|
Dr West |
Yes, they even told Laya they’d be dispatching a film crew to speak with her at her office in SoCal…then didn’t show up. I’m not sure if their incorrect terminology and links are due to willful ignorance or just misinformation (despite attempted outreach and education by you, me, Laya, Denise, and potentially others), but neither is great. I guess the take home point is that you can’t look to mainstream entertainment media for reliable health care information. -Dr. West Howard (Jack) West, MD Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor. |
| March 10, 2013 at 2:05 pm #1254614 | |
 njliu |
I guess that accurate reporting is not high on the list of purpose in the journalistic industry today. What they wanted most is the commercial success of viewership. Selling hope is the best way and the search was to put forward a survivor to share a success story. Afterall we live in a world that prizes hope, regardless of false or realistic. Wife, 54, non-smoker, Asian. 10/11: Persistent cough and loss of voice, dx Stage 3B Adenocarcinoma, EGFR Exon 19+ 11/11: Started Iressa. 02/12: CT Scan shows 50% reduction in primary tumor. 02/12: Reduce dose on Iressa by 50% due to side effects. 06/12 PET and Brain MRI stable. 12/12 PET Scan stable, Brain MRI shows multifocal brain mets, and possible Leptomeningeal Carcinomatosis. Spinal MRI shows no mets. 10 session WBR. Revert to full dosed Iressa. Tolerable side effects. |
| March 10, 2013 at 2:38 pm #1254616 | |
 Jazz |
Sadly, the days of accurate and intelligent reporting seems to have gone the way of the newspaper. Entertainment reporting, while largely fluff, doesn’t seem to care about accuracy or intelligence – in the end, it’s really more tabloid-oriented. “Brain cancer” is inaccurate but “dramatic” – even if we know that LC is much more dramatic and complex than “brain cancer”. But one can see the reporter’s eyes glaze over at the attempts to explain the difference. Complexity is often the enemy of entertainment – and as NJ says, hope is what sells, realistic or not. My best friend’s husband is a cameraman on Inside Edition. I might speak to him about it, and while he would agree wholeheartedly at the inaccuracy and the need for correction, he’ll probably say it’s part of the whole dumbing down process that entertainment TV specializes in and they’ve probably moved on to another celebrity’s health crisis… Jazz Dx 6/06 Stage IV Adeno. EGFR+ (exon 19 del), T790m+. Rand trial 2cyc Carbo/Doce/Avastin + 2 w/Gem; Bev. + placebo maint. 8/06-4/07. Study unblinded; Alimta + Tarceva 5/07 – 2/09. NED to 8/09. Tarceva 150 9/09-5/11, SBRT/XRS to lung & spine met 2/11. UCD Trial MK2206 (AKT inhibitor) + Tarceva 5 – 12/11. Afatinib+cetuximab trial @U of CO 2/12 -2/13. LL collapsed. Brain MRI 7/26 – clear. 12/12 CT mild prog. 1/29/13 PET – PD. Start Carbo-Gem-Tarceva then move to Plan B: CO-1686 or MK-3475 @UCLA …? |
| March 11, 2013 at 9:50 am #1254628 | |
|
laya d. |
Well. . .at least they are not calling it “brain cancer” anymore – - at least not in this latest article: http://todayentertainment.today.com/_news/2013/03/11/17267626-valerie-harper-on-cancer-im-not-dying-until-i-do?lite But there is no mention of lung cancer anywhere in the article either. They just keep saying its lepto – - which is correct terminology – - but to the average reader, there is no correlation with Ms. Harper’s lung cancer. Aaarghhh! So frustrating. . . Laya 1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken. |
| March 11, 2013 at 12:38 pm #1254631 | |
|
double trouble |
I think we should bombard the media with comments and requests for corrections. But that’s just me. 09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib |
| March 11, 2013 at 1:02 pm #1254633 | |
 Follansbee |
I did hear a doctor say on CNN yesterday give a pretty lengthy and apparently accurate explanation of her “brain cancer”. He said that it was leptomeningeal, affected the lining of her brain, and was caused by a metastisis of the cancer cells from her lung cancer. This doctor was introduced as a friend of hers. I didn’t catch his name. follansbee Husband 75 y, 04/11: dx Stage IV adenoc, LUL, RUL, mediastinum. Neg for KRAS, EGFR. 05/11+ : Carbo/alimta/avastin, two cycles. CT 06/11: majority of bilateral pulmonary nodules and mediastinal lymph nodes decreased in size. 07/11: 4th Carbo/alimta/avastin, well tolerated, ps excellent. On alimta/avastin maintenance. 02/12 Switched to alimta only maintenance due to dx of congestive heart failure. 3/12 Back on Alimta/avastin. 2/13 On Avasin only due to recurrent Pseudomonas infections. 3/13 – on oxygen due to SOB. |
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