Lung cancer inconclusive biopsy - 1249490

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costica
Lung cancer inconclusive biopsy - 1249490

My mother has just been diagnosed with lung cancer. She had an x-ray, CT-scan and had a biopsy taken, yet the results of the biopsy were not clear. Most likely the surgeon performing the biopsy did not get exactly to the location of the tumor.

She is in Romania and right now she does not know what actions to take. She is a bit reluctant to have a surgery only for taking a biopsy.

Needless to say that she has never smoked and she had none of the risks usually associated with lung cancer (so passive smoking is excluded).

I have only the images of the CT-scan. I don't know what other details to give and most importantly I don't know how to help her. We don't know what to do to obtain at least a diagnostic. I am getting desperate... Please advise, if possible!

I am located in Calgary, Canada, but my mom is in Romania.

Thank you!

catdander
Reply To: Lung cancer inconclusive biopsy

Hello Costica,
Welcome to Grace. I'm so sorry your mom is in this position. It isn't unusual to develop lung cancer without a smoking history. Unfortunately it also isn't unusual to not know that.

Again, it isn't unusual to have a non diagnostic biopsy. My husband has had 4. A PET scan would give more information. It will tell what kind of metabolic activity is happening inside the tumor in question. If it isn't active it isn't growing hence not worrisome for causing trouble and probably not cancer and could be watched. If it is active it could be inflammation or infection or cancer and she could try another biopsy. Even if it appears very much like cancer it's possible that it isn't cancer. Until there is tissue in hand there is no definitive dx of cancer.

Surgery would not be out of the question if it is thought that there are no other areas of concern (including MRI of brain) and her health was such that it made surgery feasible for curative intent.

These are all big questions that need to be addressed by her doctors.

I think a good way to help your mom is to learn as much about the dx process as possible, we have that information. Find out who to contact to discuss these options. Your mom may be able to find an advocate for her in the system in Romania. Or you may need to find that out.

More information to have would be the size, has it been watched if so, has it grown? What are the doctors there suggesting.

Below are 3 links to very good discussions about dx

http://cancergrace.org/lung/2011/12/07/yankelevitz-lung-nodules-podcast/
http://cancergrace.org/lung/2010/05/12/general-work-up-and-staging-of-lu...
http://cancergrace.org/lung/topic/differential-diagnosis-for-lung-diseases/

I hope this is helpful to get you started.
Janine
forum moderator

Dr West
Reply To: Lung cancer inconclusive biopsy

Yes, really the key is to get tissue that can make the diagnosis, however that can be done. That may be a bronchoscopy, or a CT-guided needle biopsy, but sometimes even a lung surgery is done to get tissue. The links Janine provided offer a good outline of the key issues.

All treatment plans follow the diagnosis that is made by the biopsy.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

They don't perform CT-guided biopsies there.

She had a liver biopsy. The outcome is below. I'm afraid that in non-technical terms it is simply "death".

Liver fragment with an extended area of infiltration of carcinoma, made of layers of cells with moderate nuclear pleomorphism, some with an Alcian-blue, positive, intracitoplasmatic mucous secretion; we remark tumor emboli in vessels.

Diagnosis: liver metastases of poorly differentiated pulmonary adenocarcinoma.

CEA >550, NSE 58.25, CRP 2.98.

catdander
Reply To: Lung cancer inconclusive biopsy

Costica, I'm so sorry you are so far away from your mom. It know it's very difficult to put it mildly. Stage 4 lung cancer isn't curable you're right about that but it is very treatable. Many members on this forum are living their lives in stage 4 or they have loved ones they care for who are stage 4. We work daily not to focus on cancer meaning "death" but earnestly work to focus on life. There are lots of things to hope for not all of which include living till we are 80. A dear Grace friend used to remind us we can always hope tomorrow will be a better day. I understand though that today is shocking. I think as you and your mom move forward the shock will wear off or you will learn to live with it, I'm not sure which, but she will move forward with treatment and symptom management and we can help with your understanding of that. And maybe we all we learn something (because we all have difficulty) about living with less depression.

What are the doctors suggesting? Do you have any specific questions, if so let us know. Be sure to use our library and search engine. Some browsers require you to log off before the search works. But it is worth it.

I probably overwhelm people with all the links I suggest reading but here are a few.
http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-therap...

In deciding what treatment to use most nsclc tissue is being tested for markers 2 of which EGFR and ALK have approved drugs to use against. Your mom's liver biopsy tissue can prob be used. This is a primer on the subject. http://cancergrace.org/lung/2010/10/10/overview-of-molecular-markers-in-...

Just an FYI, There are some very promising studies being done on drugs in Romania. This is a search result of trials being offered in Romania from clinicaltrials.gov http://www.clinicaltrials.gov/ct2/results?term=nsclc&recr=Open&cntry1=EU...

Janine
forum moderator

Dr West
Reply To: Lung cancer inconclusive biopsy

The biopsy shows a lung cancer that has spread to the liver. This confirms both the diagnosis and stage, so from here it is possible to move forward with a treatment plan. We'd be happy to try to comment on any specific questions you might have after learning what the doctors are suggesting.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: Lung cancer inconclusive biopsy

Hi Costica. I am sorry about your mother and the distance between you. It makes it harder when you are not on the spot - I think people actually worry more if they're in another country and can't see the person with cancer close up.
The liver is a common place for lung cancer to spread to. It's true that someone whose cancer has spread to the liver is ultimately going to die, but that doesn't need to be imminent. I have seen people on GRACE with liver metastases live active lives for longer than you would expect.
I thought the link Janine provided was useful, as it shows that clinical trials aren't always in Bucharest but also in TImisoara and Sibiu, for instance (you need to click on the tab for "Geographical locations" to see where the clinical trials are being conducted).
Very best to you and your mother.

costica
Reply To: Lung cancer inconclusive biopsy

We don't know anything about a possible palliative treatment, her doctors could not be found this week. We don't even know if they can test for EGFR mutation or they just give out a generic chemo.

For now I'm just wondering what is the median survival for this poorly differentiated adenocarcinoma. The only thing I could find is that the evolution is worse than well differentiated cancers.

I don't know what I'd do if I were near her. Right now, whenever I'm not busy with my work, I cry. I understand very well that all the hopes my mother had are now gone. I could go to see her, of course, but she says she'd hate the situation when I come home and she stays in the hospital...

Thanks for your help! I will post what I know. Right now this is all the information her doctors have. She had a brain CT scan which came out normally. For now.

Dr West
Reply To: Lung cancer inconclusive biopsy

In the US, the general recommendation now is to do EGFR mutation and ALK rearrangement testing for all patients with a non-squamous advanced NSCLC, if there is enough tissue available to do such testing. If there isn't sufficient tissue available, it's certainly a debatable point whether to pursue an extra biopsy just to do molecular marker testing -- many oncologists would only recommend additional testing if the patient has a reasonably high probability of having one of these mutations, which tend to be more commonly seen in those with a limited or no smoking history, an adenocarcinoma, and better differentiated cancers. However, this isn't to say that other people can't have one of these mutations, so it's still reasonable to check for a mutation in a pretty broad population.

I'm sorry for all she and your whole family are going through.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

The doctors suggested lung biopsy even with surgery, saying that the liver biopsy does not identify correctly the type of lung cancer. They also want to use bevacizumab.

There is a lab which tests for EGFR in her city (I don't know if they test for ALK). Iressa is available in Romania, but the government does not pay for it (in other words, for most doctors in Romania, Iressa does not exist). We could buy it, of course, but it is very hard to go with a different treatment route than the one suggested by the doctors...

certain spring
Reply To: Lung cancer inconclusive biopsy

Of course. Everyone here will understand that.
But the test is nothing like as expensive as the treatment. And if your mother did have the EGFR mutation, she could perhaps go on one of the clinical trials Janine linked to, where she would get Tarceva (similar to Iressa) for free. I realise all this depends on her situation and where she lives, but if you can find a sympathetic doctor who would help by ordering the test, it might be worth a try.
Bevacizumab is also known as Avastin, just in case that helps. It is quite a common chemotherapy drug that cuts off the blood supply to the cancer.

Dr West
Reply To: Lung cancer inconclusive biopsy

I suspect that they didn't get enough information from the liver biopsy... otherwise, you can do all of the same molecular testing from a good liver biopsy that you can do from a biopsy directly from lung tissue.

The plan that is outlined sounds reasonable. EGFR testing is the more readily available test, and ALK testing can be more challenging. Besides being a relatively newly identified molecular marker, the population with an ALK rearrangement is smaller -- about 3-4% of people with NSCLC.

I can't speak to how to obtain treatments outside of the health care system in Romania -- I know there are significant differences from place to place, and I'm sure it can be challenging if treatments aren't regularly available.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

She had today a perfusion with paclitaxel + carboplatin. I also guess the plan is to add avastin to subsequent sessions, if this treatment plan will go on.

On the other hand they will also test for the EGFR mutation on the liver biopsy. The doctors don't know if the lab can test for ALK as well. Apparently testing for EGFR takes 2 weeks or so.

The result above is all the information from the liver biopsy. I guess it would have been better to see a better differentiated cancer.

catdander
Reply To: Lung cancer inconclusive biopsy

I hope your mom does well with her treatments. Be sure to tell her to do exactly what the doctors and nurses say about taking her nausea meds on time.

Yes, to test for EGFR the tissue has to be sent to a special lab and takes a week or 2. If you are interested let me point back to my post of Nov. 2,
"In deciding what treatment to use most nsclc tissue is being tested for markers 2 of which EGFR and ALK have approved drugs to use against. Your mom’s liver biopsy tissue can prob be used. This is a primer on the subject. http://cancergrace.org/lung/2010/10/10/overview-of-molecular-markers-in-... "

Dr West
Reply To: Lung cancer inconclusive biopsy

Yes, it's somewhat more encouraging to see a better differentiated cancer, but that's just one variable among many. The most important variable is how responsive the cancer is to treatment and how well a person tolerates the therapy. For those variables, you just need to start treatment and see how things go.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

Her biopsy has not yet been sent fro EGFR, they said that first they need to do some immunohistochemistry tests and then they will do EGFR. So we expect the results for EGFR mid-December. It's also a question if the tissue sample will be good enough until then for the test.

My mother had 3 simultaneous biopsies of the liver, one biopsy hit the diaphragm. She had some pains a few days after. She wouldn't be so happy having another biopsy so soon.

Romania ... actually there is a clinical trial in her city which tests tarceva as a second-line agent in EGFR-positive people, so this test can be done. It can also be done at a private lab in the city. But of course, if doctors want to do it.

catdander
Reply To: Lung cancer inconclusive biopsy

Just an fyi if you haven't already thought about it. If your mom inters into a trial like you noted above the trial would pay for the drugs, who pays and who can afford such costs is often a problem with new drugs.

Dr West
Reply To: Lung cancer inconclusive biopsy

You don't need to worry that the tissue will "go bad" in the time before testing for EGFR mutations. As long as there's enough tumor tissue to use for testing, it's preserved in paraffin wax and should be fine whether testing is done right after the biopsy, a month later, or 3 years later.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

We can afford to buy iressa or tarceva, even with no support from the insurance. This issue was never raised by her doctors.

It becomes apparent though that the doctors insist that my mother should take chemotherapy and they refuse/ignore that EGFR test. And if they want, they can perform it and say that the result came out negative... who can check them?

I may be wrong, but I was using this thing as source of information:

http://www.cancer.gov/cancertopics/pdq/treatment/non-small-cell-lung/hea...

And to me it looks clear that, if you have EGFR mutation, you can use gefitinib on the first line, instead of chemotherapy. What's the point then going through the horrors of chemotherapy??

Dr West
Reply To: Lung cancer inconclusive biopsy

There is a pretty clear consensus in the lung cancer community that an EGFR tyrosine kinase inhibitor like Iressa (gefitinib) or Tarceva (erlotinib) is quite likely to be more effective than first line chemo in someone who has an EGFR mutation. However, that's in a minority of patients, and those without an EGFR mutation are generally better served by receiving standard chemotherapy as their first line treatment. In the US, the recommendation is to do EGFR mutation testing for patients with an advanced non-squamous NSCLC, but if we don't know someone has an EGFR mutation, chemotherapy is the generally preferred treatment approach. There is no evidence that patients with an EGFR mutation do worse by getting an EGFR inhibitor like Tarceva as second line treatment after chemo, but those without an EGFR mutation do worse if they get first line Tarceva instead of chemo.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

That EGFR test is available, it doesn't cost too much (400$), yet the doctors refuse to do it or to release the biopsy material.

From what I read, the fact that she has never smoked a cigarette and the adenocarcinoma could suggest a significant probability of EGFR mutation.

I'm wondering now what would be the risk of taking iressa along with carboplatin and paclitaxel.

certain spring
Reply To: Lung cancer inconclusive biopsy

I understand your dilemma and I am not a doctor but I am sure a doctor here will confirm that one should never mix drugs except under a doctor's supervision.
I thought what Dr West said was reassuring for your mother:
"There is no evidence that patients with an EGFR mutation do worse by getting an EGFR inhibitor like Tarceva as second line treatment after chemo, but those without an EGFR mutation do worse if they get first line Tarceva instead of chemo."
On the other hand, I also understand why your mother might not want to have chemotherapy. Does she not own her biopsy material by law?
My guess is that there is someone somewhere in Romania who would order EGFR testing for you. What Janine and I are suggesting is that you might wish to contact one of the clinical trial investigators in a trial involving Tarceva or Iressa. This could be done now or after she has finished her chemotherapy. Then the test would need to be done as part of the trial. Best of luck.

Dr West
Reply To: Lung cancer inconclusive biopsy

There are studies that show that it is feasible to give chemotherapy together with Iressa or Tarceva, and patients with an EGFR mutation generally do well with that. However, there is no evidence that the combination is better than doing these approaches sequentially. I certainly appreciate your predicament, but we can't make medical recommendations that are based on the social issues in Romania.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

Thanks a lot for your replies! You are so kind and helpful!

What can I say? I'm desolated that the doctors chose a treatment with many more side effects and worse results (if she is EGFR positive).

No, nobody will order EGFR for her at this point. The doctor who is treating her is the director of the hospital in that city and he is involved in all the clinical trials happening there (he may be even PI).

I'd want to ask about avastin (bevacizumab). I saw studies which say that in women it has no effect on average. This drug needs special approval because it is so expensive, but in Romania it often happens that the Ministry of Health approves the drugs like 2 years after the death of the patient. We thought that we might try to buy the drug ourselves ...

certain spring
Reply To: Lung cancer inconclusive biopsy

I don't think it necessarily means worse results even if your mother is EGFR positive. Quoting Dr West again (from earlier in your thread):
"There is no evidence that patients with an EGFR mutation do worse by getting an EGFR inhibitor like Tarceva as second line treatment after chemo, but those without an EGFR mutation do worse if they get first line Tarceva instead of chemo."
How is your mother finding the carboplatin/paclitaxel combination so far?
I've never seen anything to say that avastin doesn't work in women. But Dr West recently wrote a post about a trial which looked at adding avastin to carbo/paclitaxel. The researchers concluded that this triple combination did not help prolong life for people over 70. So I think it might be an issue of age rather than gender. Here's his post:
http://cancergrace.org/lung/2012/04/26/zhu-jama-avastin/
I'm sure if you were with your mother you would not feel quite so desolate. It is very hard to be the one who is far away.

costica
Reply To: Lung cancer inconclusive biopsy

about Avastin and women:

http://www.nejm.org/doi/full/10.1056/NEJMoa061884

http://theoncologist.alphamedpress.org/content/12/6/713.full

The first is a 2006 study with 2000+ citations, the second is a FDA drug approval summary which says "Although a consistent effect was observed across most subgroups, in an exploratory analysis, evidence of a survival benefit was not observed in women (HR, 0.99; 95% confidence interval, 0.79–1.25)".

She still has peripheral neuropathy and she had pains in the bones and muscles. And of course, she's waiting for her hair to fall ...

If I'd be with my mother I guess I'd cry each time I see her. She was hoping that one day I will have children and she will see her grandchildren. Now this is clearly over. And many other things ...

certain spring
Reply To: Lung cancer inconclusive biopsy

I apologise if I am wrong. I am sure Dr West will be knowledgeable about the issue of Avastin and gender - if you search the site you'll see that he was writing about this in 2006, when the NEJM article you cited was published.
I'm sorry it is so hard. But you have your mother now. The future will take care of itself.

catdander
Reply To: Lung cancer inconclusive biopsy

Certain Spring is right. On all counts. The info on avastin still stands. I'm very sorry your mom is so sick. We are all in this situation in some way. And speaking as a person who has lived and worried about her husband for the past 3 years I can safely say as difficult as it is for me it is more difficult for the person with cancer than the person who loves them.
this may be helpful, http://cancergrace.org/lung/2012/04/26/zhu-jama-avastin/#more-9468
I hope you continue your cancer education by using our search engine, cancer info links and FAQs.

Dr West
Reply To: Lung cancer inconclusive biopsy

The question of Avastin (bevacizumab) in women is based on a subset analysis of women and men separately from the ECOG 4599 trial, which happened to show that the significant benefit wasn't seen in women but was seen in men. This is widely considered to be at least a very questionable conclusion, very possibly (probably?) just a random finding that isn't real at all. There is little or no biologically plausible explanation for Avastin working in men but not women, except perhaps for the possibility that more women benefited from enough subsequent therapies in second line and later that the beneficial effect in women washed out with follow up. In fact, since women did get a very clear improvement in response rate and progression-free survival but not overall survival from Avastin, that does appear to be the only explanation -- they did benefit when they were on it, but it didn't make enough of a difference to affect overall survival in the long run.

And that would be my main conclusion: Avastin isn't so impressively valuable that it is something incredibly critical in the treatment plan. If it were that good, it would have been shown to improve overall survival in some other trials after ECOG 4599, but it has failed to do so. I wouldn't want to tell you what to do, but I personally wouldn't consider it a remotely good use of the money it would cost to pay for out of pocket.

If the medical care in Romania is completely unacceptable, do you have the means to move her out of there? I think that might be a better use of the money that you'd otherwise be spending on Avastin.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

Please do not hesitate to give advices! All of you helped a lot!

Many Romanians go for treatment to Vienna, paying everything from their pockets. For me it would be a language barrier also, but the big issue is that apparently there is no treatment. Either in Austria or in Romania the treatment options are quite restricted and it's more of an issue of luck - as you said earlier, you've got to start the treatment and see how it goes. My mother would be very reluctant to go to another country, alone in a hospital; I was thinking about this if surgery would have been an option.

Well, there are exceptions to the medical system in Romania, there are some good and dedicated doctors, but yes, overall it's quite bad.

Things have changed a bit. Apparently the doctors were not very sure about the initial diagnostic and that's why they required additional testing. Now that diagnostic was confirmed and they have sent out the tissue for EGFR test. They said however that the sample that's left might be a bit small.

Please feel free to suggest other options which might not be possible to pursue in Romania.

and thanks a lot!!!

costica
Reply To: Lung cancer inconclusive biopsy

So, thanks to your advices, my mother was tested for EGFR mutation and the result is positive. She is scheduled to have the second round of chemo tomorrow, as it takes about a month until Tarceva gets approved for her. Iressa may also be available.

On another hand, Tarceva/Iressa are not that expensive and we could buy them ourselves.

I'd really like to know what you would recommend in US (or another country where there are no restriction on the availability of drugs).

Chemo she had carboplatin and paclitaxel, but apparently they also have cisplatin combinations available. My mother had some side effects from carboplatin, such as significant pain and peripheral neuropathy 3-4 days after having chemotherapy.

Thank you!

certain spring
Reply To: Lung cancer inconclusive biopsy

Oh that is great news. How did you get the test done, after the opposition from her doctors?
Tarceva and Iressa are similar - Iressa is widely used in Asia, whereas Tarceva is the drug they use in the US. Here in the UK, both are used. They belong to a category of drugs called TKIs - tyrosine kinase inhibitors. One of the GRACE doctors will be able to explain the differences between Iressa (gefitinib) and Tarceva (erlotinib), but from my understanding either drug could be helpful for your mother.
Would she consider one of the clinical trials we mentioned earlier, in which case she could get it free while staying in Romania?

costica
Reply To: Lung cancer inconclusive biopsy

Apparently the doctors wanted first to perform an IHC test because they wanted to confirm the "poorly differentiated" diagnosis and then go with avastin. My mother insisted on EGFR based on the info she received from here.

The clinical trials I think test Traceva as second-line.

In any case, the situation now is that they are filling the file, the national state insurance approves it in about a month, in the meantime my mother is scheduled to have 2 more sessions of chemo. I was wondering if it would be better to stop chemo now and buy Iressa/Tarceva ourselves (that is affordable compared with avastin for instance).

catdander
Reply To: Lung cancer inconclusive biopsy

This quote to you from Dr. West is from Nov 12, " ...but if we don’t know someone has an EGFR mutation, chemotherapy is the generally preferred treatment approach. There is no evidence that patients with an EGFR mutation do worse by getting an EGFR inhibitor like Tarceva as second line treatment after chemo,..."

Once a treatment is started a person usually stays with that line of treatment. And as quoted above there is no evidence that a person does any less well having EGFR inhibitor 2nd line instead of first. Regardless your mom will most likely receive both at some point.

As for the "horrors" of chemo, most people find chemo quite doable. There are meds that mitigate most of the side effects that are unpleasant, such as nausea and vomiting. Make sure she keeps the cancer center apprised of side effects and take their directions such a timing of nausea pills verbatim it makes all the difference. She will experience fatigue most likely. If her blood counts drop too low the doctors will allow for that but they usually raise again before the next treatment.

Hoping for the best,
Janine
forum moderator

Dr West
Reply To: Lung cancer inconclusive biopsy

As Janine noted, there's really no evidence that people with an EGFR mutation who get an EGFR tyrosine kinase inhibitor as second line therapy or maintenance therapy do worse than those who get it earlier. There is certainly no established, "best" way to go, but I think many and perhaps most lung cancer specialists would favor sticking with chemo long enough to clarify its value before rushing into an EGFR inhibitor, as long as we can be confident that the EGFR inhibitor will be given in a timely way when it's needed.

Please also note that it's hard for me to understand what doing EGFR immunohistochemistry testing is going to add if someone has a positive test for an activating EGFR mutation.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

Thanks for the replies!

No, they are not doing EGFR ihc testing, they did IHC testing to confirm the initial diagnosis of poorly differentiated adenocarcinoma. After performing that, they sent the tissue sample to another lab to test for EGFR mutation.

Janine, the horrific side effect is the loss of hair. It's like a constant reminder that ... She did not have nausea or vomiting, but had pains in her legs and hands for a few days -- serious enough that she could not sleep during the night.

certain spring
Reply To: Lung cancer inconclusive biopsy

Well, if she moves to Tarceva or Iressa for second-line, her hair may grow back. I lost all my hair from radiotherapy and it came back. I still think the EGFR result is excellent news.

costica
Reply To: Lung cancer inconclusive biopsy

"most lung cancer specialists would favor sticking with chemo long enough to clarify its value"

May I ask how do you proceed? After how many rounds of chemo you require or recommend imaging in order to evaluate progress? I have read here that tumor markers (like CEA) are not so reliable for evaluations, so I guessed that imaging must be the only way. Of course, I may be wrong and unaware of other methods of evaluation.

Dr West
Reply To: Lung cancer inconclusive biopsy

Typically, we repeat scans after 2-3 cycles of chemo. In the US, it's more commonly two cycles, and in many other parts of the world, particularly Europe, going three cycles between scans is quite common.

You're right that serum tumor markers like CEA are not considered to be a reliable indicator of the effect of treatment.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: Lung cancer inconclusive biopsy

My husband has gotten scans consistently every 3 months throughout treatment.

This isn't to keep you from asking questions on the forum but to add to your knowledge base,
I want to encourage you to use our FAQ and search engine. The link below is a post that explains treatment assessment with several options for further reading in green live links at the end of the post.

http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-r...

Best for your mom,
Janine

costica
Reply To: Lung cancer inconclusive biopsy

What do you recommend for preventing/alleviating numbness and pains in legs and hands (I guess it's called peripheral neuropathy)? I have read a few articles here on Grace, but I couldn't find my way through them, there were some concerns about drugs interfering with the chemotherapy.

catdander
Reply To: Lung cancer inconclusive biopsy

Grace can't recommend treatments but can give information. What is it you don't understand about an article. If you highlight and copy the portion you're not sure about and add you questions we will be able to help you get it figured out.

Janine

costica
Reply To: Lung cancer inconclusive biopsy

Well, I was looking here:

http://cancergrace.org/cancer-treatments/2009/10/11/prevention-treatment...

and here:

http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2010/022310/page6

and I don't know which of the drugs/supplements mentioned are thought to be the safe (not interfering with chemo). Some things like B6 + B12 or the alpha lipoic acid would be readily available, but I wanted to hear what others say about the impact of these onto chemo. I am aware that this is a shady area and it is impossible to have clear, definite answers.

Thanks.

Dr West
Reply To: Lung cancer inconclusive biopsy

The concern isn't so much that they interfere with the chemo, but rather that nothing we know of is especially effective against this except stopping the offending agent causing the neuropathy.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

Nothing new. She had her third round of chemo and she will have a CT-scan after January 1st. The main reason was that they just set up a new CT device. She has the option of taking Tarceva or have the 4th round of chemo.

Her analyses are normal except GGT (showing though a decreasing trend) and LDH (500 in october, 400 in november, 287 now, while the normal range is 135 - 214 U/L). I know LDH is called "low diagnosis help".

EGFR: no mutation in 19, L858R in exon 21, nothing in 20.

Is it standard to do a MRI to look for bone mets? She had none until now.

Well, here is a problem in the medical system there: the doctors across different branches do not collaborate. That is why for example, the thoracic surgeon to whom she was referred for biopsy wanted to perform surgery (yes, my mother was scheduled to have surgery, attempting to either remove the tumor, or, if not possible, to take a sample). For the thoracic surgeon success = clear lungs. It just doesn't matter for him if mets appear after that in many areas of the body, from his point of view he cured the cancer in the lung. He did what he was supposed to do.

certain spring
Reply To: Lung cancer inconclusive biopsy

That mutation in exon 21 is a good one to have - it is one of the most common, and it makes your mother a good candidate for Tarceva. The various mutations are explained by Dr Pennell here:
http://cancergrace.org/lung/2009/03/20/np-egfr-muts-demystified/
and Dr West writes here about exon 19 and 21 deletions:
http://cancergrace.org/lung/2011/01/15/are-there-significant-differences...
I think you are doing very well in negotiating the healthcare system, with all its drawbacks!
It might help the doctors to be able to see a forum signature, as described here:
http://cancergrace.org/topic/grace-tips-set-your-forum-signature

costica
Reply To: Lung cancer inconclusive biopsy

Well Certain Spring, I could try to go with her outside the country, but, as far as I understand from this site, she receives the best treatment that is currently known (true, there are some judgement calls like "cisplatin or carbo", but I think these are not significant and nobody can say beforehand "this is better").

Yes, I hate when the drawbacks are due to humans: it was not about resources and money, just the humans. It was so hard to test for EGFR first and use Tarceva as first line?

certain spring
Reply To: Lung cancer inconclusive biopsy

You've done brilliantly for your mother. I wish someone had done for me what you have done for her.

Dr West
Reply To: Lung cancer inconclusive biopsy

I completely agree that if she's getting the best treatment (with appropriate minimization of very debatable small points like cisplatin or carboplatin, or whether the drug the platinum is paired with is a taxane or Alimta or gemcitabine, etc.), there isn't a clear incentive to travel extensively. That said, it's good for you to have a solid understanding of the basic approaches in order to help navigate the system and avoid treatments, such as surgery in advanced lung cancer, that would provide no clear benefit but might be recommended for questionable reasons.

It isn't typical to do MRI scans looking for bone metastases just for surveillance. We'd sometimes do an MRI if someone is describing new back or hip pain, for instance, and has a history of a cancer that could very possibly spread to the bone, but it isn't standard to just do MRI scans to survey for metastases in someone without pain or other localizing signs.

The exon 21 mutation is, as you've now learned, an activating mutation associated with a good probability of a response to an EGFR tyrosine kinase inhibitor like Tarceva (erlotinib) or Iressa (gefitinib). There's certainly an incentive to ensure that it's given, but it would be very reasonable to defer that until after first line treatment has been completed, particularly if there are indicators that she's doing better.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

costica
Reply To: Lung cancer inconclusive biopsy

Tarceva may be difficult to find -- except on the black market, where you don't know what you buy.

I'd like to know if normally you leave a gap of a few weeks beween the moment you end with chemo and the moment you start erlotinib?

Speaking about clinical trials and the difficulty of finding Tarceva: in her city, there is a clinical trial studying Tarceva (but I guess that first line)

http://www.clinicaltrials.gov/ct2/show/NCT01153984?term=nsclc&recr=Open&...

Dr West
Reply To: Lung cancer inconclusive biopsy

Yes, it looks like that trial is meant to be evaluating patients receiving Tarceva (erlotinib) as a first line therapy.

Outside of a clinical trial, you don't necessarily need to wait to start Tarceva. Usually we make a decision about the next treatment after someone is already a few weeks out from the last chemo and would potentially be due for more right at the time of a decision to make a change, so I'd say it's most typical that people haven't just received chemo in the last few days before someone starts an EGFR inhibitor.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

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