Options available?Is there a standard? - 1264680

dazedandconfused
Posts:15

What if any options would be standard for treatment at this point?Is it common practice or standard of care to wait three months at this point?Thank you in advance for any information you may offer.Are there treatments available at this point?

Dx- 7/14/213 stage iv nscl brain met and hilar.RESTAGED after craniotomy showed no adenocarcinoma showed lesion in brain pathology to be stage 1 gliaal neuronal .8/13 lobectomy rul and #10 lymph node malignancy.RESTAGED LUNG TO stage 2A 10/13 4 rounds cisplatin/Alimta 25 daily concurrent radiation.Three month mri brain clear.three month lung ned 5/20/14 six month mri brain showed brain met.5/14 srs on lesion in brain..Scheduled for additional scans lung in SEPT .and brain July /14.

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Reply # - June 29, 2014, 11:00 AM

Dr West
Posts: 4735

There's no clear standard for how to manage lung cancer that has demonstrated a brain metastasis that was treated with SRS. It's possible to give further chemo, whether additional Alimta (pemetrexed) or switching to a treatment commonly used in second line, such as Taxotere (docetaxel) or possibly Tarceva (erlotinib). However, many people would favor observation alone if there's no evidence of disease outside of the brain. Whole brain radiation might also be considered, but wouldn't be widely favored.

Good luck.
-Dr. West

Reply # - October 30, 2014, 06:42 PM

dazedandconfused
Posts: 15

Hello, Well we went with the observation alone. I have now developed 2 new mets, one on the cerebellum and the other in the parietal. I will be having srs .Whole brain radiation has now been suggested by my oncologist as well as neuro. I prefer to wait until the bitter end where srs would not be an option due to the number of mets. Temodar has also been suggested to try to treat mets. My neuro said chemo my oncologist did not. I have not found any encouraging info regarding the use of temodar. Any info on the temodar or possibly any other standard treatments that may be available would be really appreciated.Thanks All !

Reply # - October 30, 2014, 06:46 PM

dazedandconfused
Posts: 15

Hello Again, I'm sorry I failed to mention that my ct of thorax/ab Sept 28 showed NED.

Reply # - October 30, 2014, 07:16 PM

JimC
Posts: 2753

Hello,

Dr. West had this to say about the use of Temodar for brain metastases:

"Temodar (temazolamide) is commonly used for primary brain cancers but isn't routinely used for metastases from lung or other cancers at this time. It's being studied, and I think it's a very understandable, reasonable treatment, but because I'm a lung cancer specialist, I don't have a vast experience with it: it's usually associated with decreased blood counts and some fatigue, but probably similarly well-tolerated as Alimta (pemetrexed)." - http://cancergrace.org/forums/index.php?topic=10773.msg87177#msg87177

In the same thread, Dr. Weiss stated his opinion:

"Temodar does have some early-stage data in lung cancer and at least one oncologist that I respect very much does reach for it sometimes for patients with lung cancer and brain mets, but it is not a standard therapy.

The idea that standard chemo never works for brain mets is increasingly being challenged, although radiation remains the primary therapy, when possible.

Respectfully, I have a different perspective on the tolerability of temodar relative to alimta. Alimta is one of the best tolerated chemo drugs that we have. Temodar isn't a terrible drug, but it does cause more fatigue and nausea that alimta in the average patient."

JimC
Forum moderator

Reply # - October 30, 2014, 07:28 PM

dazedandconfused
Posts: 15

Hi Jim, Thank you for the information. I am truly just at a loss as to what can be done, if anything, other
than what I mentioned. I'm very upset that chemo is not being offered as I am willing to, of course, try anything with the hopes of prolonging survival. Well thank you again! :cry:

Reply # - October 30, 2014, 07:58 PM

Dr West
Posts: 4735

I don't really have anything to add to Jim's comments. I am not a fan of Temodar in this setting and would say that there's very weak evidence for it.

-Dr. West

Reply # - October 30, 2014, 08:27 PM

dazedandconfused
Posts: 15

Hi Dr. West, Thanks so much for replying. Temodar doesn't appear to be of much use from what I have read as well. It is a tough situation to be in.

Reply # - October 31, 2014, 12:12 PM

Dr West
Posts: 4735

I'm sorry for that. I wish we knew more about what should be the right way to proceed.

-Dr. West

Reply # - October 31, 2014, 01:49 PM

dazedandconfused
Posts: 15

Hi Dr. West, Thanks again for taking the time to respond it is really appreciated. I will keep on keepin on :lol: :-D

Reply # - December 31, 2014, 12:18 PM

dazedandconfused
Posts: 15

Hello and happy new year!

I just wanted to post an update. November 2 I received stereotactic to the tumor in the cerebellum. Two days later the tumor was surgically removed.The surgery was pretty tough and I had nausea and vomiting.
The pathology of the tumor came back as pulmonary in origin adenocarcinoma.I also developed a pseudomeningocele which was resutured twice and drained for cytology. Results showed no leptomenegial and no meningitis.
Followed up with oncologist in December and was prescribed Temodar three weeks on one week off 140 mg.My ins. company promptly denied coverage for it.
I received a voice mail from my oncologist that ct of chest is ned and since I am NED right this moment will wait and watch.
Are there any treatments available that may prove helpful ?I am searching the trials as well. Any suggestions would be very much appreciated.

Reply # - December 31, 2014, 12:42 PM

dazedandconfused
Posts: 15

Hi! My apologies ,you previously answered this for me! I am just very confused that temodar was offered but was denied by the ins. company but no other chemo or treatment offered hmmmm..........

Reply # - December 31, 2014, 07:00 PM

JimC
Posts: 2753

Hi,

Often when stage IV lung cancer treatment produces NED scans, no further treatment is recommended because there really isn't any way to determine whether that treatment is helping - there's nothing to measure on scans. In addition, there are a finite number of regimens available, and oncologists prefer to maximize the benefit of each. As Dr. West is fond of saying, the treatment of lung cancer is a "marathon, not a sprint." As he's said:

"It becomes a balance of trying to give good anti-cancer treatment while also trying to preserve a patient’s ability to continue on therapy — essentially trying to not overdo it early because you’re going for endurance. More and more, we’re trying to think of treatment for advanced disease as less a sprint than a longer-distance race, if not a marathon, so you need to pace yourself." - http://cancergrace.org/topic/update-on-mom#post-1248696

So it really isn't a surprise that no further treatment is being recommended at this time.

JimC
Forum moderator

Reply # - January 1, 2015, 09:27 AM

dazedandconfused
Posts: 15

Hi Jim and Judy,
Thanks for responding to my post. Jim what you have said makes sense .I am thankful for everything that has been done for me this far. I guess I am just having difficulty adjusting to this new way of life. I will try to focus more on the positive outcomes of my treatment.
Judy thank you for the link. I have printed out the application and faxed it to my onc. Doing that certainly made me feel less helpless.
Hoping for a long marathon for us all and a bright new year. Thanks again!

Reply # - January 1, 2015, 12:12 PM

Dr West
Posts: 4735

Yes, Temodar in this situation is a reasonable consideration, but there's no clear, established role for it, and it's not approved in this setting. It's therefore not especially surprising that it isn't being covered.

There is no clear answer to the question of what to do in this situation, and I think many thoughtful oncologists would not be inclined to recommend any further therapy, or at least would question whether there is a good probability that Temodar will be significantly beneficial. Often an insurance company will reverse a denial if the oncologist speaks with someone there directly and can make a clear and compelling case for it. If not, it's fair to question why a treatment should actually be recommended.

Good luck.

-Dr. West

Reply # - January 30, 2015, 04:03 PM

dazedandconfused
Posts: 15

Dr. West, Thank you for taking the time to respond , I had called my oncologists office on Dec. 31 to see if they received the fax I sent regarding Merck and obtaining the Temodar. I was dumbfounded by the reply I received from the nurse who stated 1. We knew you wouldn't get the Temodar 2. There is nothing the Dr. can give you. 3. You do not qualify for any trials. 4. This is not coming from me but the Dr. HUH?
I was just calling to see if you received the fax...........
I was so freaked out by the conversation that I drove all the way to MD Anderson in Texas (2k miles round trip), for a second opinion.
The oncologist I met with there advised against taking the Temador because he felt the risk was far greater than any known benefit in the prevention of nsclc brain mets. That was fine with me because my insurance wouldn't cover it.
Do most oncologists tell their patients when they prescribe something that is not fda approved for treatment of the patients disease? I had no clue until insurance denied for not standard of care and coming online .
I received my Temodar through a donation and it arrived on Tuesday. If I could find one study or trial that showed any miniscule response I would certainly start taking it. I am still looking.
I am starting to feel very insecure with the center I am with as my original oncologist as well as both radiologists resigned and left.
Thank you for listening to me ramble. You all have been a tremendous help to myself and so many others. Please know it is appreciated. Debra

Reply # - January 31, 2015, 01:06 PM

cards7up
Posts: 635

I'm sorry and I shouldn't have provided that link to you. I thought you still had brain mets as you said Temodar was recommended to you. And my thinking was that it was recommended by your doctor. If not, then I definitely would not have recommended it to try to stop a recurrence. I'm not sure where you got the Temodar, but I would never take a prescription drug unless it's given by the doctor so you can be followed appropriately. Most onc would not prescribe something they know is not FDA approved unless they worked directly with your insurance to get approval. I think the majority has already said they wouldn't take it and I'm with the majority. Wishing you the best. Take care, Judy

Reply # - January 31, 2015, 01:55 PM

dazedandconfused
Posts: 15

Hi Judy,The Temodar was by prescription from my current oncologist. I sought a second opinion at MD Anderson because this seemed extremely odd and not standard of care to me either. I went back to my oncologist on Thursday and the oncologist told me again to take it. Md Anderson told me not to.I won't take it. I really do not know what my oncologist is thinking???It was NEVER explained to me,by my oncologist, that it was not approved by the FDA and she did not get it through Blue Cross because it is not standard of care . I am really upset over this whole thing.I did not get any answers last week from oncologist.
I think it is time to switch oncologists.Thank you for your help. Again this was by prescription from my oncologist at the cancer center I have been at since diagnosis in 2013. I didn't ask for any chemo she just prescribed it after my last surgery.

Reply # - January 31, 2015, 02:04 PM

dazedandconfused
Posts: 15

Judy,Thank you again for taking the time to help me. I do not understand why she prescribed Temodar either. :cry:

Reply # - January 31, 2015, 02:23 PM

dazedandconfused
Posts: 15

Hi Again. Just to be clear the money for the pharmacy to be paid for the prescription of Temador was donated.Sorry if it seemed that the temodar was donated.

Reply # - February 13, 2015, 04:47 PM

dazedandconfused
Posts: 15

hello, Just when I thought I could not be more confused... I am. I just found out that I do still have one brain met that has not been treated. I have been trying to find trials I have found a trial for nsclc with asymptomatic untreated brain mets. The only issue for my exclusion would be the size of the met. Trial requires 5 mm ,no greater than 20 mm. My mri w/wo contrast only states tiny frontal met unchanged from previous mri. .I have tried to get information concerning what size but don't have an answer to date. I have read that in order for the met to be seen on the mri it would have to be 1/8 " which would be 3.175 mm ?? I have no idea if that is accurate .I hope this makes sense to someone .I find it hard to believe I am trying to figure out what size tiny is. Maybe tiny is not measurable? I hate to make an out of state trip for an interview and not qualify for that reason. I know this all sounds probably as ridiculous as it feels. Any suggestions very welcomed.
Debra

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