CraiginPA
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Posts posted by CraiginPA
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Sublime219,
I'll second dianew's suggestion of seeing a pulmonologist. If it were me, I'd push for a biopsy if it were possible and I wasn't too frail to handle the procedure.
More specifically, if the biopsy is of things that are accessible from within the lungs, then I'd try to get a bronchoscopy biopsy (if the nodes can be reached that way) done a a medical center where they can target the cancer do EBUS (endobronchial ultrasound) & camera guidance rather than just fluoroscopy (x-ray) in order to have much better targeting. It made an difference to my diagnosis.
Best hopes,
Craig in PA
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FYI -- I have updated my long comment at
viewtopic.php?p=430112#p430112
to include some URL link citations and some other edits.
Best hopes,
Craig in PA
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Thanks, Katie.
I do try to be very diligent to never provide "medical advice," just relevant medical information and sometimes a recommendation for how to seek the best medical advice.
"Medical advice" would be telling someone how to treat or not treat a medical condition without involving a medical professional or in contradiction to instructions from a medical professional. At least that's the way I see it; is that fair?
"Medical information" would be factual information that would be used to prepare for and then discussed in conversations with licensed medical professionals so the patient can be sure they do discuss important things and understand what's being discussed during a short, infrequent, or stressful office visit with their doctor. That's part of what patient advocates do.
If you ever see me offer "medical advice" instead of factual "medical information" and opinion, please do bring the errant statement to my attention and I'll be glad to correct it promptly. I don't think I offered any "medical advice" in my earlier comment, but I do appreciate your need to make that clear.
Best hopes,
Craig
P.S. It's unfortunate that we have to become a little educated on our own behalf, but occasionally it makes a difference. I was told a very sad example of that a few days ago, but it's better to talk about the up-side.
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No worries, Katie & CurlySue.
FWIW, I can provide citations for any factual statement about research I've made, if you need any, either published research or statements made by expert oncologists.
Of course where I'm offering an opinion, that's just my opinion. For example, I am definitely biased in favor of things that have proven valuable to me, and given my bad experience with "local" doctors who were ignorant and would've made me worse off, you can understand why I'd feel its important to get 2nd opinions from experts. (The hard part is knowing which specific area of expertise will be worthwhile, because there's no such thing as an expert in every research area all at once. For example, there'd be different top experts for the different experimental immunotherapy approaches ranging from vaccines to anti-PD-1 drugs, just as there are different experts for EGFR-driven cancer vs. ALK or ROS1.)
Best hopes,
Craig
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(updated to add some citations & reword some things.)
Peppermint Patty,
Since you are negative for EGFR I think you'll want to have your doctor explain why the trial of a drug for EGFR would be your next best bet. If I remember the research studies correctly, Tarceva has something like a 15%-20% chance of being useful for an non-EGFR lung cancer.
http://www.ncbi.nlm.nih.gov/pubmed/22000696
That's definitely a bet worth trying at some point and maybe now is a good time in your situation (especially since you can get it with the MM-121 booster that I think is supposed to extend duration of effectiveness in people with EGFR). But it might be worth asking whether there could be anything with better odds. I think even chemo has better odds at least initially, and if you had a drug-targetable driving mutation that would offer much better odds.
Given your age and never-smoker status, your adenocarcinoma has a good chance (about 50%) of having a driving mutation that is likely to benefit (e.g., 85%-95% odds) from a drug targeted to the one driving your cancer. As you probably know, since you are negative for EGFR and have adenocarinoma, you should be tested for ALK. If that fails the rare ROS1 mutation is probably worth testing (given you are a never-smoker), and maybe even a new one, RET, might be worth considering testing next.
(Note: A person almost always has only one driving mutation, at least initially, so testing stops with the first positive match. And the more you rule out, the higher your odds of having one of the others you haven't tested yet.)
Normally oncologists would test for the not-so-useful-yet KRAS mutation before very rare ones like ROS1 and RET, especially since KRAS can be tested locally and having that ones rules out having some other rare one, but as you can see in this chart in this presentation, in a never-smoker even ROS1 is more common than KRAS:
BTW, don't settle for vague statements like "you've been tested" that don't say which mutations you were tested for. Until the driving mutation of your cancer is known you'll be better off knowing which specific ones were tested so that when new ones are found to be useful you'll know whether or not you've been tested for it.
For example, few oncologists knew about the usefulness of ROS1 a few months ago (and it's still only tested well by a couple of labs like MGH in Boston and U. Colorado, though more will sooner or later). Presentations by Dr. Alice Shaw at the big ASCO conference for oncologists (30,000+ attendees) in June has started to change that.
http://chicago2012.asco.org/ASCODailyNews/Abstract7508.aspx
You can see the tide changing on that here (see 3rd & 4th graph):
Now I hear RET is the new rare kid on the block that few oncologists will know about (even though there are drugs for that Rx-able or in clinical trials, ones previously successful for RET in other kinds of cancer). So at least in a never-smoker, it smart to know if these rare ones were tested.
BTW, an oddity recently found in one study was that in some patients chemo eradicated EGFR-driven cancer leaving behind active cancer that tests negative for EGFR, yet some of these patients remained sensitive to the EGFR inhibitor drug Tarceva nonetheless. I wouldn't put much faith in that yet, but it might be something to keep in mind if a person's mutation test used a post-chemo biopsy sample and tested negative for all the others. It might explain why some people without any identifiable mutation benefit from Tarceva anyway.
http://jco.ascopubs.org/content/early/2012/07/23/JCO.2011.39.3744
I'm sorry to be so direct, but ever since I found I had a drug-targetable driving mutation I've been passionate about finding Stage IV lung cancer patients who could benefit similarly if only they were tested, and you fit the profile of someone with a decent chance. You're a young never-smoker with stage IV adenocarcinoma who has already been found to not have the EGFR mutation. In my obviously-biased opinion as a patient who has been through this but knows a little about the odds, your odds of having a useful driving mutation might make it worth seeing one of best research oncologists in the "newer" mutations like ALK, ROS1, and RET. For ALK (and maybe ROS1), Dr. Alice Shaw (MGH, Boston) and Dr. Ross Camidge (U.Colorado, Denver) have done the best research lately. I don't know the best expert for RET but Alice told me a few days ago that they've started testing for it in their lab. So given you are in Buffalo NY (btw, I was born there), you might consider getting a 2nd opinion from Dr. Shaw. (If you are too far away, your oncologist would probably send your biopsy samples to one of those two labs for a ROS1 test if you needed that test, unless there is some other lab I don't know about that started doing ROS1 testing recently. It might save time to have ALK and ROS1 tests done at the same lab.)
FWIW, Dr. Shaw's research saved my life. I wanted to know which mutation was driving my cancer, and I didn't care if there wasn't any drug for it yet. My 2nd opinion oncologist in Philadelphia (who became my new "local" oncologist despite being 75 miles away) told me to go to her instead going to the tops-in-cancer-overall MDAnderson (Houston)
or Sloan-Kettering (NYC)
I was thinking of going to. When I met Dr. Shaw she knew I fit the profile for ALK or ROS1 (per her research). Given I already had an tentative "negative" on my ALK test, she followed a hunch and tested my biopsy for the rare ROS1 mutation first -- and she was right! Better yet, she had started a trial of Xalkori (crizotinib) for that just a few months before, so I became one of the first dozen patients in the world to try this drug for ROS1-driven lung cancer, a drug already proven for ALK and starting to show good results for ROS1. It's been working beautifully for me for a year now -- no significant side effects, dramatic shrinkage, and from the 2nd day my cancer symptoms were virtually gone. (Drug resistance could emerge any time now, but she's got a couple of other very good 2nd generation drugs lined up to try next.) If I hadn't taken the initiative and seen an expert in what I turned out to have, I'd be a year closer to my grave today.
Like I've said, RET might be the next new one after ALK and ROS1. There are also others in clinical trials like MET and BRAF. And for really curious patients like me, if those better individual tests don't pinpoint the right one, MGH (and a few other labs around the country, too) can screen for more than 100+ possible mutations using a panel assay, although only a handful look promising for being useful at this point.
I've said enough. I just want to make sure that if you happen to have one of these rare lucky driving mutations, you find out early enough to take advantage of it.
P.S. -- BTW, there also other avenues of interesting experimental research that don't depend on a driving mutation. Odds of benefit might be lower or less reliable than other options today, but some look promising for a portion of patients and further improvements and pre-screening criteria might improve their odds, hopefully within our lifetimes.
Best hopes,
Craig in PA
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I'm so sorry you're facing this, Peppermint Patty.
What specific type of lung cancer is it? Given the drugs you've mentioned, could it be adenocarcinoma? (Don't say NSCLC -- that's just a category; the specific type makes a different to treatment options.)
If it's adenocarcinoma, has it been tested to determine the cancer's driving mutation?
- Is it EGFR (in which case Tarceva would be likely to help for a while)?
- Or ALK or ROS1 (in which case Xalkori would be likely to help for a while)?
- Or RET (also some drugs for that, via trials using drugs for that that had been used for other kinds of cancer)?
- Or the not-so-useful-yet KRAS (which is rare in never-smokers like you; there's even some trials of drugs for that and a couple of them might help a portion of patients for a while).
Given a trial of Tarceva + MM-121 was suggested, could it be that your cancer is EGFR-driven?
What part of the country are you in?
Does your oncologist specialize exclusively in lung cancer? (Those that do have a better chance at keeping up with the breaking research. Given your doctor has already suggested a trial that might help extend the benefit of Tarceva in EGFR-driven cancer, I'm suspecting that he/she does specialize in lung cancer.)
Best hopes,
Craig in PA
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Ana (anaperiodista),
What specific type of NSCLC is it? Adencarcinoma? Squamous cell? Large cell? something else?
The type of NSCLC affects treatment options and the usefulness of certain test. For example, most NSCLC should be tested to determine if it's driven by an EGFR mutation, but if that's not the one then the odds of there being an already-useful rarer one depend on the type. (The other in squamous tend to be more experimental; adenocarcinoma has ALK and ROS1, and maybe more experimental ones.) Both adeno & squamous have a chance of the no-so-useful-yet KRAS, but if she is very frail then experimental treatments might not be a practical option.
Where are you located? Is she seeing an oncologist who specializes exculsively in lung cancer? It's hard for a general oncologist to keep up with the research details for lung cancer.
Best hopes,
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No, curlysue50, was was not criticizing you, I was just defensively clarifying what I meant to make it clear that you didn't need to be defensive like your opening sentence had looked.
Since you've now clarified what you meant, I've withdrawn that clarification comment since it doesn't seem necessary afterall.
Best hopes,
Craig
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(unnecessary comment withdrawn by author)
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George (EsseFortis),
Could you could help me understand what is confusing about my reply?
Yes, NET's (neuroendorcine tumors) & carcinoids can be considered a NSCLC (non-small cell lung cancer, i.e., anything other than small-cell), but as you already know they are also different from other NSCLC's or SCLC's in some ways, and treatment options can be a little different. So even though you may want to learn about things common to NSCLC including NET's, it is to your advantage to understand your specific type better and join conversations with people who have the same *specific* type of lung cancer you have.
For example, there is a treatment originated in Germany (and I think there's a clinical trial of it somewhere in the USA) that targets NET's; other NSCLC's don't have that option. On the other hand, I don't know if drug-targetable mutations like EGFR, ALK, and ROS1 occur in NET's (they aren't in SCLC and odds vary even within the NSCLC types).
If you click on the link I provided, you'll be able to go to a category of discussions within the inspire.com lung cancer forum that focuses specifically on NET's/carcinoids -- people with the same specific type of lung cancer you have, people who will more precisely understand your situation and be able to share their experience and knowledge about that with you. (Most of that forum will require you join inspire.com and it's lung cancer forum. BTW, you will want to go into your personal/privacy settings there and turn off all commercial contact/inquiries or else drug companies might annoy you with surveys, etc.)
Best hopes,
Craig
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Besides asking the wonderful people here questions that occur to you, let me suggest that not many know a lot about carcinoids, but you'll find a number of people dealing with that here:
http://www.inspire.com/groups/lung-cancer-survivors/topics/neuroendocrine-nets-carcinoid-tumors/
(Sorry to suggest a different site for specialized support, but you probably need to hook up with other people who follow that and experimental treatment options more closely than people with other kinds like me.)
MD Anderson is considered #1 in the USA for cancer in general, but what you probably need most is the #1 expert you can find in carcinoids/NET's and I don't know who or where that is.
Best hopes,
Craig
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kmelinda,
I'm sorry to hear about that complicated situation.
I'm not sure it matters to anything I could suggest, but I'm a little confused that you say the lung cancer is only in the pleura and nowhere else, but then you say the tumor is located in his left lung where the bronchial enters (left mainstream).
Re: pleural effusion, there is a procedure called TALC that sometimes can stop or reduce the building up fluid in the pleura in order to allow easier breathing.
Re: squamous cell lung cancer, there are a number of possible driving mutations that could be the one driving the cancerous behavior. One that might be useful, if it is the one, is an EGFR mutation. Is his cancer being tested for that?
Besides EGFR, there are other mutations that might possibly be useful in experimental trials, but I'm not sure if he'd meet the other eligibility requirements. (e.g., FGFR, PIK3CA, KRAS, PDGFR, DDR2, NRAS, though I would guess that DDR2 might be the most promising of those, followed by FGFR, and the others might not be very useful yet).
FYI - Oncologists who specialize exclusively in lung cancer will probably know lung cancer best, so you might want to at least get a 2nd opinion from one if your main oncologist doesn't specialize like that. It's impossible to keep fully up to date on every kind of cancer and see patients of every kind.
Best hopes,
Craig
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Maria,
Is your Dad's cancer driven by the EGFR mutation? If so, which specific variant? (Some specific ones are known to be resistant to Tarceva, but usually Tarceva works.)
If the cancer isn't driven by the EGFR mutation, there's still a chance Tarceva might work, but it's not a large chance.
If the cancer isn't driven by EGFR, then it means it might be driven by something different, like ALK for which there's a usually-effective inhibitor drug that would (like Tarceva for EGFR) likely work for a number of months.
So, which specific type of cancer is it, adenocarcinoma? And which specific mutations have been tested? EGFR? ALK? KRAS? anything else? What were the results of those?
Also, is there a smoking history? (That can affect the odds of certain driving mutations.)
Best hopes,
Craig in PA
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Maria,
I sort of see the logic then. I don't know the odds of it working. It depends on whether the pazopanib is correctly addressing whatever make the Avastin (bevacizumab) ineffective.
Given Avastin was used, I'd guess it is an adenocarcinoma, is that right? Have tests of driving mutations been done, e.g., EGFR, ALK, KRAS? (I'm wondering if there might be some other drug with much higher odds of working well.)
Best hopes,
Craig
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In those two trials it seems like it is intended to deal with progression after Avastin (bevacizumab). Had he tried that before and progressed?
Or is it a different trial where maybe it's being tested as an alternative that might be better in some way?
Best hopes,
Craig
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Pazopanib
That seems to be an inhibitor of vascular endothelial growth factor receptor (VEGF receptor) and platelet-derived growth factor receptor (PDGFR). Have you found that you've got one of those driving the cancer?
I think Avastin also targets VEGFR, too.
I think about 4% or 5% of squamous cell carcinoma has a PDGFR issue. Was the cancer tested to determine if it has an PDGFR mutation (or amplification or up-regulation)?
Best hopes,
Craig
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span/sapna (sapnathakur),
What specific type of lung cancer is it?
Adenocarcinoma? Squamous cell? Large cell? Small cell? something else? (Note: non-small cell lung cancer [NSCLC] is a category, not a specific type.) The specific type is important to determining drug options and odds of certain tests being useful.Best hopes,
Craig
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I'm sorry to hear that, Kurt (NucksCelts). It sounds like his time had come far earlier than anyone expected. I imagine that might be especially hard on you and the rest of his family, not giving you all enough time to adjust to the prognosis.
Though he wasn't able to stay longer, at least he no longer has to struggle against this disease. Now it's time for you and the rest of his family to heal from the ordeal and adapt to his absence.
Best hopes,
Craig
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Sorry to hear of that difficult news, ywmeku.
What specific type of lung cancer is it? Adenocarcinoma? Squamous cell? Large cell? Small cell? something else? (BTW, "non-small cell lung cancer" is just a category, which isn't useful enough.)
Best hopes,
Craig
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Can you be more specific about what kind of non-small cell lung cancer (NSCLC) it is? Adenocarcinoma? Squamous cell? Large cell? something else? (NSCLC is a category, not a specific type.)
Can you tell us if any tests of the "driving mutation" have been done, like for EGFR or any of several others?
Best hopes,
Craig in PA
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Sounds like you've had good diagnostic work and have a good treatment plan. I hope it all goes well.
Best hopes,
Craig
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Probably so, but we focus on lung cancer here so it's hard for us to know what is done for brain cancers like glioblastoma or neuroblastoma.
Best hopes,
Craig
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Kurt (NucksCelts),
NSCLC (non-small cell lung cancer) is a pretty broad category. If you have clearance to hear his medical info, if you call your oncologist's office any nurse there can probably tell you which specific type it is. (If they know its a NSCLC they'd know which specific type or at least would have narrowed it down to a couple.)
NSCLC is worth testing for its driving mutation. It should at least be tested for an EGFR mutation since Tarceva usually (not always) works for that. Depending on the type, ALK and others might be worth testing. Any nurse in your oncologist's office can probably tell you over the phone which "mutation" (molecular rearrangement) tests were done and can probably repeat to you any results. (KRAS isn't so useful, but others might be.)
Best hopes,
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paldridge,
How are things currently? Was the specific type of lung cancer determined? (Adenocarcinoma? Squamous cell? Large cell? Small cell? something else?) Were any specific gene tests done? (Those don't apply to all types.)
Best hopes,
Craig
Adenocarcinoma? Squamous cell? Large cell? Small cell? something else? (Note: non-small cell lung cancer [NSCLC] is a category, not a specific type.) The specific type is important to determining drug options and odds of certain tests being useful.
NSCLC: 3 months in, more diagnosis, changing plan of attack
in NSCLC GROUP
Posted
Her doctors at Jeff should have covered most of this question already, but may I ask if her cancer was tested to determine which one mutation is driving her cancer? Some aren't so useful yet (like KRAS), but others have high odds of being inhibited with a drug for a number of months (specifically EGFR, ALK, or ROS1, although there are some others emerging in the research that may be useful like RET). Never-smokers have better odds of being driven by a useful mutation.
Best hopes,
Craig in PA