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New to Forum - Diagnosed January 2012


Peppermint

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Good morning all. Just wanted to take a moment to introduce myself. My name is Patty (Peppermint). I am a 42-year-old wife and mother of 3 (17, 12 & 12). I am a non-smoker diagnosed with Stage IV Lung Cancer in January 2012.

Don't know how or why I got this terrible disease. I don't smoke or drink, worked out 3-4 times a week (tae kwon do) and eat good too, except for those darn chocolate chip cookies. LOL

Anyway, I have been on chemo since Feb 22, 2012. Cisplatin first. I received 4 rounds of that and was then put on maintenance Alimta and Avastin. Been on that ever since. I have been kickin' cancer's dupa. My last visit on Sept 19th showed one troublemaker in my right lung.

My oncologist has suggested either going on a new chemo, Docetaxel or a trial of either Tarceva or Tarceva w MM-121. Since I am still really good in the fight, the trial didn't sit well with me.

I went for a second opinion and they have suggested perhaps just radiating this one spot and then trying the Tarceva. Having my first PET scan today so we will decide what direction soon.

Can anyone give me their take on these options. I know it is ultimately my decision, but I need to be around for a long time.

Thank you all. With Love, Patty

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HI Patty,

I know a few folks on Tarceva and it's worked well for them. One was stage 3B and has been cancer free now for over 5 years. There can be extreme side effects as well, but there are also medications that help with those. It is your decision and I know others with first-hand experience will be round soon to give you their personal experience.

I just wanted to extend a welcome to you and let you know that I am glad you found us- although I hate that you have to be here.

I wanted to let you know about our Ask the Experts, where you can ask medical oncologists questions

http://blog.lungevity.org/ask-the-experts/

I also wanted to let you know about our LifeLine support partner program where I can match you one on one with a survivor mentor for support. http://events.lungevity.org/site/PageNa ... eLine.html

Unfortunately we have a lot of members who have been diagnosed in their 30s and 40s who are incredible mentors and are inspiring as well.

Please keep posting and keep us updated on what road you decide to take. I look forward to getting to know you

KatieB

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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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Hi Patty,

I just wanted to say welcome to you. I don't really have any thoughts on your options for further treatment, but I know Tarceva has worked well for people here.

Hopefully others will weigh in and definately go to the Ask the Experts like Katie said.

Keep us posted on how you are doing and what you decide. And keep kicking that cancer dupa!

Cindy

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So nice to get some replies. Yay. Nice to meet all of you. Yes I have Adenocarcinoma. It was tested back in February for EGFR and it was not a match. However, there has been success in patients without the match as well. The second opinion doctors will be testing my tissues again. Both my current oncologist and the new one I just consulted with suggested Tarceva.

I live in Buffalo New York.

Obviously my children and husband are my life. I plan on living to be 100. My goal is to be on the Smucker's Jar. LOL I am pretty tough and am fighting this like a wild woman. However, I do have my moments of uncertainty.

I appreciate all your support and will be checking in.

Love to all.

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Hi Patty - I also wanted to welcome you to this club none of us ever wanted to belong to. It sounds like you are a fighter and have a positive attitude (in my opinion that's half the battle). Although we all have our "moments of uncertainty", there are many many stories of hope and success to focus on. The first time I was diagnosed with LC my youngest son was still in high school, and he is now 32 and due to have his third child next week. I think your goal of living to 100 is quite doable :)

Please come back often and let us know how you are doing. Everyone here is so supportive.

Diane

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Hi Patty

Welcome to this great site. I was diagnosed 5 years ago and joined here shortly after. This site was my lifeline. Members here are very educated on this sibject and are a great bunch for support.

I have read alot of Tarceva success stories. You have to be your own best advocate. You do sound like a fighter and don't settle for 99 if 100 is your goal. Take care.

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Welcome Patty:

I have not used Tarceva, but have heard of others having much success with it. If your oncologist is suggesting it, there must be a reason. You don't know until you try. Talk to your oncologist about the pros and cons of each treatment and ask for his or her opinion. Then make your choice. I try to educate myself as much as possible and they tease me at the treatment center I go to, about how many questions I ask and that I always ask to see a copy of my scan reports. I have learned a lot I did not know about my body since I have had lung cancer.

I am also stage 4 adenocarcinoma and have the ALK translocation, which made me a perfect candidate for the genetically targeted therapy, crizotinib (Xalkori). My first line treatment was infusion carboplatin/taxol which gave me extreme side effects and did not shrink my tumors so we only did 4 rounds. At that point, they did the genetic testing and found I had the ALK translocation. My oncologist called me at home and said,"Mrs. Gamble, I have some good news for you, you have the ALK gene mutation and Xalkori is just released outside of clinical trials for use." It was the first good news I had had in awhile. The drug was not available when I first started treatment in August 2011. We decided to wait 90 days after I finished infusion chemo. Even though I had no shrinkage of tumors, they had become stable and you keep your treatment options open for as long as you can. Less than 30 days after my last chemo, I started to get very sick again. In fact, I never really felt better, but got even worse.

In January 2012 they started me on the Xalkori. Within 2 weeks my daily vomiting stopped. I started to gain strength. I could drive a car again! Yay! It took a little time, but my left lung which had been totally collapsed by tumor started to fill with air. My adrenal tumor disappeared, the nodes in my right lung disappeared, my liver tumors stabilized and my bones, which were affected by the cancer, had started to try to fill in and heal. My out of control diabetes and blood pressure, were now able to be controlled. Except for some nerve pain, once in awhile from damage to my spine, and a some discomfort in ribs if I lift something too heavy, (perfect excuse to ask my husband for help), I am doing really well.

August 9, 2011 was my diagnosis. I am now a one year survivor. My daughter's wedding was Sept. 1st this year. Last holiday season before the Xalkori treatment, I was not sure if I would be able to be here to attend her wedding. It was in Columbus, OH and was BEAUTIFUL. My life is different than before, but I appreciate every single day. They tell me they can not cure me, my metastases are extensive, but the twice a day capsules I take today, have chased away the cancer for now. My oncologist is so pleased, and was amazed how well I responded to the treatment. I was only his second patient to use the drug.

I hope you will make the right choice for your treatment. Please keep us updated on your progress. This group here has become like family to me. They cheer me on when I get discouraged and revel in my triumphs. Like you, I was not a smoker and did not expect to get lung cancer. But, I do have it and it has changed me. It has made me more compassionate. It has made me appreciate my life more. It has gotten the best out of me. And I mean that in a positive way. It seems like in my life, that every thing happens for a reason. Sometimes that is hard to find, but if I believe that, it makes it possible to keep going forward.

My thoughts will be with you, and let us know how you are doing. I have found there is no thought or question too small to be asked on this site. We have been there, and understand.

Hugs,

Susan

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I am on the other side as a caregiver person now. tarceva has had a lot of success with members and it does have its share of Side effects. If you decide to get in on this trial thanks for being a pioneer in Lung Cancer Research!!

Welcome to the place no one wants to be but is happy they are here!!!!

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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):

http://www.oncbiz.com/blog/2012/06/2012-asco-annual-meeting-immediate-impact-on-clinical-practices-non-small-cell-lung-cancer-nsclc-renal-cell-carcinoma-rcc/

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)

http://health.usnews.com/best-hospitals/area/tx/university-of-texas-m.d.-anderson-cancer-center-6741945/cancer

or Sloan-Kettering (NYC)

http://health.usnews.com/best-hospitals/area/ny/memorial-sloan-kettering-cancer-center-6213060/cancer

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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The statements above are not made by a medical professional and are NOT meant to be taken as medical advice.

Sorry Craig but I have to state that. Your reply outlines specific actions for her to take and I need to be certain that she (and everyone else) know that this is a peer to peer support message board and medical advice is not being offered here.

Please consult your medical team and you may always visit Ask the Experts, where you can ask Dr. Jack West and other medical oncologists general treatment questions

http://blog.lungevity.org/ask-the-experts/

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Thank you for stating that, Katie. I was beginning to wonder if this advice was coming from a medical professional. It is important that those coming to LCSC go to their own medical professional or to the link you provided for medical advice. I am sure anyone's oncologist would not be happy to have their medical advice to their patient questioned by a lay person. Lung Cancer of any type is a serious medical condition and needs to be treated by professionals.

Susan

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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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Hi Craig,

we've met in person and have had some conversation so I know where your intentions are-- many others may not.

Some folks may feel that you are distributing medical information or advice quite aggressively, when I know you are passionate about informing people to advocate for themselves.

It may help to "soften" your delivery a little to let folks know that you are providing information from personal experience --maybe a starter post letting them know if they want more information to let you know- you can provide it, or direct them to a link or article, etc... and that you are trying to help others know about the different tests/mutations/treatments in hopes it will aid in their survival or at the very least ignite conversations with their doctors.

Just my perspective. I just had to be sure folks knew we were in no way endorsing or distributing medical advice!

Thanks everyone!!

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Craig - I haven't met you, but I understand your intentions. And while I agree with Katie about perhaps "softening' the delivery and making it clear you aren't a professional - as someone who lives in a small town with only a handful of "general" oncologists, I have to second what you have said and wish you had been around to say it to me four years ago.

When I was diagnosed for the second time 4 years ago, I didn't know there was anything like genetic testing for these various mutations. It was new then, but still being done in some of the larger cancer centers. I only heard about it in this group long after, and when I asked about having the some of my tumor tested was told there wasn't enough left. Don't know if that was true either. Where I live we are a long way from any major cancer center and I think things have to become pretty routine before they are considered standard care here.

I love my oncologist here, but I found the clinical trial I participated in entirely on my own and had to kind of convince her to refer me. She had never heard of it, and after I brought it to her attention referred several other lung cancer patients as well. If I were being diagnosed today, the first thing I would do would be to find the best (most up-to-date cutting edge) lung cancer specialist and get their opinion, and then get a second one. With some of these options, especially clinical trials, if you miss your window of opportunity that door can be closed entirely.

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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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