Anyone with Stage IV Adeno/BAC on Tarceva+Avastin?

I meant to post this specifically under Stage IV, so I am re-posting:

Is there anyone out there with my mom's diagnosis who can share their experience with Tarceva/Avastin (or Tarceva alone)? My mom's diagnosis is Stage IV Adenocarcinoma with Bronchioalveolar features (she has a mix of Adeno and BAC). She did 5 rounds of Carboplatin/Taxol (adding Avastin as of round 3) and had good results (shrinkage in the multiple nodules throughout both lungs) as of the first follow-up CT. But since there was some growth in one of the lung nodules in the 2nd follow-up CT, the oncologist cut short the Carbo/Taxol (did only 5 rounds instead of the initially planned 6 rounds) and has put her on Tarceva/Avastin. The good news is that she tested positive for the EGFR 21 genetic mutation -- which means she should respond well to Tarceva. We hope, we hope!

I'm seeking some help in understanding how the Tarceva/Avastin helps with her particular diagnosis where there is a "mix" of 2 types of cancer. It's my understanding that the Adenocarcinoma is the "faster growing" cancer (which the Carbo/Taxol was supposed to attack). The Tarceva (again, from my limited understanding) is more targeted towards the Bronchioalveolar cancer (the slower growing cancer). So my main questions are these: 1. Does the Tarceva target the "Adeno" element, or is it only effective with the Bronchioalveolar element? 2. The oncologist seemed to waiver on whether to do Tarceva alone or Tarceva/Avastin together (he said the studies for Tarceva + Avastin for people who have the EGFR 21 mutation are not yet complete/conclusive) So is there anyone out there who's had experience with any particular regimen (Tarceva on its own or Tarceva + Avastin)? 3. Is there anyone who's got my mom's diagnosis who's had good results with Tarceva or Tarceva/Avastin?

My mom's diagnosis with this Adeno-BAC mix seems to be particularly troubling. So I'm seeking any and all insight I can gain from anyone out there who's having a parallel experience. Any feedback would be greatly appreciated. Thank you so, so very much!

Best,
Isabelle

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Isabelle,

My mom has adenocarcinoma stage 4, bilateral on both lungs, and mets to the bones and spine. If you follow my past discussions you can read how much I've commented on Tarceva.

I support it, for it gave my mom four months more to live then estimated. She started sometimes in early February till ten days ago it improved her health by a milestone. Her only problem was that her liver count went up and her Dr. gave her a break, which I don't think we should have taken a break. And she should have been more aggressive possibly persued Avastin along with it.

We couldn't make her take one more chemo infusion for she too failed Carbo/taxol/Gemzar one cycle( 4 sessions) . Her side effects were deadly from chemo. She ended up being hospitalized three times from shortness of breath and fluid in her lungs. Then when she had her CT scan her ca did not improve either, infact they progressed.

Then when she started Tarceva we noticed great improvement in her within a week. She started cooking, walking, and was more sociable. She had some light side effects. She had those nasty rashes on her cheeks lips and tongue, which she kept them under control. Some diahrea once a week which Immodium helped alot. And fungus on her feet rash like, which we bathed her feet in warm water and white vinegar twice a day for few minutes and see them disappear. So the benefits outweighed the cons. And another thing Tarceva is much milder then standard chemo.

And most importantly her blood count lmproved and her tumor mark improved.

Good Luck.

Lena

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My mom doesn't have BAC features and so far as I know does not have the mutation. THat said, Avastin and Tarceva are supposed to be better together than either alone. In my mom's case standard chemos did not work and at last scan (may 23) she was stable with this cocktail (she'd been getting it since late october or early november). She has another scan on tuesday so we'll see. In terms of side effects she has the usual: rash, diarrhea, cracked fingers/feet etc. And also hair loss onthe sides of her head. She also tires very easily, but then again she has only one lung.

I hope your mom has great success with it.

Katie

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Hi all! My wife has had wonderful results with the Tarceva alone. She was almost gone when diagnosed with Stage IV exactly as your mother was, on Jan 11, 2007. Today she is able to shop, do housework and pick the kids up from school. The Tarceva made the nodules in her lungs completely go away and she had surgery to stop the accumulation of fluid in her lungs. When went to the beach June 23-29 and she felt great.

Now we are back at home in the Tennessee Valley and she is not feeling as well, the air here is heavy and we sit in a valley with stagnant air. I'm also starting to get worried about her because the rash has subsided a little bit, she's not broke out near as bad as she was 4 weeks ago. My wife was too far gone to try chemo, so the onc. told us the Tarceva was her only hope. The lung Dr. gave her 3 months to live on Jan. 11. She is 46 and a life long nonsmoker.

I only wonder how long my good luck will last....

Anyone out there know how long the Tarceva keeps working? Send me a message.

Thanks,
bob

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Bob,

My husband responded well to Tarceva and was on it for two years. His lung nodules grew slightly over a 3 -5 month period so we decided to be aggressive and try Alimta and Avastin. But the drs were willing to stay on Tarceva and just add Avastin. They are actually going to put him back on Tarceva with possible Avastin when the chemo cycles finish. So we're not done with it yet. Good luck to you and your wife, it sounds as if your luck will hold for a long, long time. Also, the rash tends to come and go so don't worry, just enjoy the time when it subsides.

by the way, yesterday at chemo, the dr. told us he wasn't worried about what treatments we will do next because there are so many new things to try! Five years ago when dx, we hadn't even heard of Tarceva yet or Avastin or Alimta!

Julie

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Thank you all for your feedback. It's just so interesting to me -- It seems that the Tarceva + Avastin combination is something that is being used. And yet it's not "officially" medically proven to be an effective combo, and therefore insurance will not cover it. Which is extremely frustrating. Has anyone else experienced this dilemma as well?

Isabelle

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My mom took a different path but has used the same ingredients - I think some of my information might be helpful.

My mom was Dx lat eFeb, 2006 w/ Stage IV Lung Cancer, Brain Mets, and a pleural effusion (they drained a few liters).

A few weeks after the Plerual Effusion they started Radiation on her brain, and since she was a non smoker started her on Tarceva. My mom was tested for the Mutation which she had. After she completed her radiation treatment she had her first scans which showed good results for the brain mets, but also, a great response in the lungs (primary tumor went from 4X6cm to 1.8X2.1). Doctor decided to keep her on Tarceva.

This path went well until February 2007. It was clear my mom was getting a little weaker, and we feared that the Cancer cells were becoming resistant to Tarceva. test results confirmed this as the Tumor size grew to 3.5X 2.1. There was also increased metastic activity as measured by a PET scan.

My mom was going to enter a trial for HKI-272. She was approved and we were on our way. BUT then things got real bad. Part of the HKI-272 trial required she discontinue Tarceva for two weeks. When she did this the Cancer "flashed". To make things worse a pulmonary embolism developed (cancer causes blod clots) landing her in the hospital. Her doctors recommended that she not go on the study, and instead go for Chemotherapy - she also WENT back on Tarceva.

***Here is my opinion which doctors have said is plausible. When she went off the Tarceva the Cancer came back with a vegence. While It was clear that Tarceva couldn't hold things back on its own, it was also clear that Tarceva was still working.***

In early March my mom started Chemotherapy - Taxol and Carbo Platinum - We also decided (against one Oncologists advice but concurrent with another) to go with Avastin. The reason why Avastin was not recommended was because of my mom's Brain mets. To mitigate against this risk the doctor ran a CT scan on her head right before her chemo to ensure there was no activity upstairs. This was confirmed. A day after my mom's third scan her results showed significant improvement. Her Primary tumor was back to 2.1 X 2.2 CM.

*** A few points to consider - MY mom is STILL on Tarceva. Tarceva is a great drug, it works everybit as good as chemo but with far less side-effects. The only problem is the mutation. HKI-272 is supposed to deal with the mutation, so I would keep my eye on that. Even though my mom did not go through with the study, we are not ruling it out if /when the cancer starts to grow again. HKI-272 is the next step in Tarceva drugs, I would get your ducks in line now.

The other point is Avastin. Based on my research, Avastin appears to make cancer therapy better. If its wtih Chemo or Tarceva, I think the Avastin (which thins the blood) allows for anti-cancer agents to work better.

Another drug to consider down the round is Nexavar. Its similar to Tarceva, but also different because it attacks the cancer cells via different pathways.

The good news is that you are responding to a line of therapy, once you respond, chances are better you will respond ot the next. If your real lucky you may respond 100% to Tarceva. There is a person I have corresponded with Ernie, who drove his cancer into remission with Tarceva.

Good Luck and G-d Bless.

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Iwagman:
Thank you for forwarding all this information. I'm curious -- your mom's cancer -- is it Adeno? Bronchioalveolar? A mix like my mom's? I'll definitely look into the HKI-272 situation and "get my ducks in a row," as you suggested. Again -- I so much appreciate your help.

Best,
Isabelle

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My mom was diagnosed with Adenocarcinoma. I think the key here is that your mom's cancer has the EGFR mutation. Because of this, its quite possible that she will respond a long time (in fact years) to Tarceva. This was the case with my mom who got a solid year out of Tarceva without any other chemo agent. My hope is that the time your mom needs HKI-272 , it would have been approved. The one negative on HKI-272, and this is pure speculation, is I have not heard anything reported on how the drug is doing. The Recent ASCO (american society of clinical oncology) conference has not reported anything (either positive and negative). In 2006, the Phase I study presentation done at ASCO showed reasons for optimism. Keep in mind (as you probably already know) Doctors tend to be cautious in reporting good news.

Good Luck

Larry

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Larry:
Thank you for your reply. I am indeed extremely hopeful that my mom will respond well to the Tarceva given that she has the Exon 21 mutation. Unlike your mom, my mom's dx (Adenocarcinoma w/ Bronchioalveolar features) does make me less certain of how the Tarceva will "target" the nodules, given the "mix" of cancers. That's what concerns me most -- and seems most "foggy" -- the lack of medical information on how Tarceva works when "targeting" Adeno WITH BAC. Do you have any particular insight on that? Or any suggestions on where I might find more data? If so, please let me know. Thank you so much.

And yes -- hopefully by the time my mom needs to move on to a new drug like HKI-272, it will be approved. But may her need for it be in the far distant future... hope, hope!

Isabelle

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I.m still trying to understand what to expect from Tarceva. My husband Sonny has ncslc . , stage 4 . working on 3 months worth of tarceva . small rash on his nose . loose bowel movements . from time to time I think we just have to take 1 day at a time . and pray for the best .............. Nancy

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Is your mom old enough for medicare? Because they are covering this combination for my mom. THe docs in FLA told her they wouldn't give her the combination (avastin costs about $30,000 - not a typo - per infusion) because medicare wouldn't cover it in this instance. SHe had already been getting this combo in Chicago so we thought this was weird and FOUR hours of talking to various beaurocrats in the Medicare office and it was approved again. In fact, they kind of wondered why I was wasting their time talking about it.

All of which is to say keep trying to find a way to get it if your docs think it's a good idea. ALSO, there are some clincial trials evaluating this combination so maybe you could get into one of those and then the drug companies/hospitals pick up the tab.

Katie

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Katie:
Thank you so much for writing. I have a question -- Do you happen to know if your mom tested positive for the EGFR Exon 21 mutation? That seems to be one of the complicating factors in getting my mom "approved" for the Tarceva + Avastin. Apparently, there are studies that prove that Avastin added to Tarceva greatly improves effectiveness of the Tarceva for patients who do NOT have the Exon 21 mutation. But we're being told the studies are not yet conclusive for whether or not Avastin added to Tarceva greatly increases effectiveness of the Tarceva in the instances of patients who DO have the Exon 21 mutation. Please let me know if you know whether your mom was an EGFR Exon 21 "yes" or "no," and how that affected your conversations with Medicare in terms of getting the Avastin approved. Thanks!

Isabelle

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My mom had an EGFR test done a little over a year ago. She did not test positive. I'm not sure if they looked at exon 19, 21 or both or more... She had such a bad rash/reaction that she was kind of on again off again for about 6 weeks with Tarceva alone. We then realized that she had a big intestinal mass (that I think was there from the beginning because something lit up in the initial staging PET at that same exact location but was explained away as pooling of contrast medium because it's such a weird place for LC to go. So after that we decided NOT to continue Tarceva. After that was removed surgically mets were discovered in the adrenals so something needed to be done. We had the sample removed from the intestine sent to Rational THerapeutics in CA and they tested a bunch of chemos on it (the docs at MDA and Rush weren't in favor of the testing) and they said essentially nothing would work and that "erlotonib was not active." My mom tried cisplatin/navelbine because they said it was the best option. It knocked her off her feet, she was essentially in bed for a month and then once it finally wore off (she managed 3 cycles 3 weeks apart) she was practically skipping into her CT scan. The unfortunate part was that this cocktail allowed the mets inthe adrenals to grow. We had lots of discussions between docs in Chicago and Houston about what to do. THe doc in Chicago said that other conventional chemos were unlikely to offer much benefit and that he suggested Avastin & Tarceva, explaining that he thought she hadn't really ever given the tarceva a chance to really do its thing since she was on & off of it so much. He said tests showed that Avastin & Tarceva had been shown to be much more effective together than either one seperately.

All that is background to tell you that no one at Rush or Medicare ever asked about the test they just put her on the protocol and got on with it.

My mom has a scan on Tuesday so we'll see how it continues to work, we're all nervous as usual.
kk

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Katie:
Thanks for getting back to me. I appreciate it so very much! I'll relay this information to my mom so she can see if her oncologist can get things going in the right direction. If Medicare is willing to simply put her on the Tarceva/Avastin regimen without asking about whether she's positive or negative for the Exon 21 mutation, that would be great! Because if it's not approved by insurance, it's going to be extremely difficult to pay for. As you well know! And as you also know... all too well... we just want the best for our moms. So any drug combination that might help -- that's what we're going for!

Let me know how your mom's scan goes on Tuesday. I'm sending positive, positive, positive thoughts!

Best,
Isabelle

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Hi

Praying for your husband. Keep your collective chins up.

I was diagnosed w/non small cell carcenoma June 2000. Had uuper lobectomy. Clean until 11/05. Resection 4/06 of 7ml nodule. nsc again. 3-4 other 2ml nodules in lung. Watched/wait till 10/06. At that time "numerous" 2-3 ml nodules found on CAT. On Tarceva since 11/06. Rashes on face at first. Now those have diminished 98%. Some hair loss and medium to heavy rashes on thighs.
Feel strong. No cancer symptoms. Eat like a horse.

Any reason he is not on chemo? One oncologist reco'd chemo..said Tarceva wasn't a bad idea..jusr preferred chemo. My present oncologist said why put you thru the rigors of chemo. Right now I have no change in my pathology.
You may rspond to my E-mail @ dallowsgary@aol.com.
Thinking of you both.

Gary

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My mom does not have the BAC symptoms. I'm not a doctor but my guess is that since the BAC corrolation is based on features (as opposed to the actual type of cancer) this wouldn't change your mom's likely response to Tarceva.

There are two ways in which you will know Tarceva is working.

1. Is the most obvious - Mom is feeling better. When my mom went for her first CT scan after being on tarceva for about 6 weeks, I told her flat out that the scans are going to reveal a large amount of shrinkage. Sure enough the cancer shrunk from 4X6 to 2.0X2.2

At this point I can tell how my mom is doing just by the way she looks and speaks. (I imagine doctors can do the same thing). This is not to say my mom just took the drug and it was a cake walk. She has the runs, and basically needs to eat the most boring foods in the world (or pay the price), when she first took the drug she also got the rash (a clinical sign the drug may be working). In fact the rash in combination with her Whole brain radiation, caused some real discomforts. Thankfully a dermatologist recommended some products that to reducee he discomfort.

As I stated before, the pathology of your mom's cancer is a strong indicator that she will do well. Having the EGFR mutation corrolates best to response. My guess is that your mom will have a significant response. My prayers are that she responds well to Tarceva for many many years.

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Larry:
Thank you for your note today. It made my day start off with a smile and great hope. My mom's first follow-up scan since starting on Tarceva is in about 5 weeks. Like your mom, my mom has already encountered "the rash." It broke out in full glory on her face, and she's been working on ways to reduce the sensitivity. But the oncologist (like you said) informed her that this is a sign that the medication is "doing it's thing"!

I believe you are absolutely right -- The best indicator as to how our moms are doing is how they're feeling. My mom feels GREAT. She keeps saying, "If only my insides were doing as well as I feel on the outside." And my answer back to her is -- "You ARE as good as you feel."

I'm extremely hopeful about the Tarceva. And thank you for clarifying about the BAC being a "feature" of the cancer. I suppose BAC refers more to the fact that the nodules are multi-focal. It sounds like your mom's adenocarcinoma is focused on one single lesion, as opposed to many.

I wish you and your mom all the best. It sounds like the Tarceva is doing wonderful things for her -- and may that continue to be so! Again -- thank you so, so much for all your feedback. It has helped a great deal.

Best,
Isabelle

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Hello Isabelle:

Just wanted to mention some information about Tarceva+ Avastin vs. chemotherapy to help provide a perspective.

Chemo can be considered like a shotgun blast - it hits the target (cancer) and lots of other normal cells too (it had trouble hitting only the right target, like Vice President Chaney does). Tarceva + Avastin are better targeted drugs that work on genes that control and regulate cellular processes.

Tarceva inhibits a mutant gene that is involved cell signaling/ communicate. As a result of this mutation, cancer cells get the wrong signals and proliferate abnormally and the cancer cells don't respond to the usual signal to die so they continue to live. This is one of many factors that contribute to tumor formation.

Avastin inhibits a different type of gene mutation that affects cell regulation and control - that is, the gene that causes growths to become vascularized and therefore grow faster because they have a better blood supply (tumor angiogenesis).

Sometimes chemo works with lung cancer, but sometimes it doesn't because one of the problems at a genetic level is that, depending and your particular genetic makeup, cancer cells tend to have problems with processes that normal cells don't have trouble with (i.e., with proliferation, differentiation, metastasis, responsivity to chemotherapy, dying (apoptosis), etc.). Some cancers get hit by chemo and don't stay knocked off.

Similarly, Tarceva and Avastin, don't even start working with some cancers, but not with others (primary resistance). In addition, these targeted drugs can start working for a time and then stop working after that(secondary resistance) because there are other genes that limit them (a K-RAS mutation, for example, can stop Tarceva from inhibiting the EGFR mutation). BTW, one of the possible (not fully confirmed) findings is that the more rash with Tarceva, the better it must be working.

One good feature of Tarceva and Avastin is that they may be better targeted and better tolerated than chemo and deal with two different aspects of tumor development. But which drug regimen of chemo and/or targeted drugs is best for a particular person varies widely - no one regimen fits all.

Me, I still struggling with how to pay for my Tarceva and whether or not to take it. And, I don't have either answer yet. This stuff isn't simple.

Regards and my best to your mom,

David

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David:
Thank you for all the feedback and for taking the time to explain what you know. I know you're right -- there's no one regimen that fits all. And to some extent it's simply a "try and see" game. So here's hoping for good things!

I wish you all the best --

Isabelle

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My recollection at my diagnosis was that bronchoaveolar was a TYPE of andenocarcinoma, not that they are two different cancers. So hopefully the "mixture" factor is not an issue. This is something I found on eMedicine:

"Adenocarcinoma is the most common histologic subtype, manifesting as a scar carcinoma. This is the subtype observed most commonly in persons who do not smoke. This type may manifest as multifocal tumors in a bronchoalveolar form. Bronchoalveolar carcinoma is a distinct subtype of adenocarcinoma..."

Also, it sounds like there isn't a perfect formula for whom the Tarceva works. I know that they have the stats worked out, but it sounds like there are cases of every type for whom Tarceva can work. I'm on it now (with Avastin), so I am sure hoping it will work (will be scanned in a few weeks). I love having predictability (and control) too, but I'm really starting to understand how little the stats mean to me as an individual.

Take good care and prayers for your family,

--Stephanie

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