It's just impossible, the oncologist has never looked at scans. That's why I wanted so much to get her into a trial, *any* clinical trial...
Well, a comment about similar situations is welcome. I read here that doctor West said that 1 cm is the maximum size for which a lymph node is considered normal. The report said "bilateral axillary adenopathy with a max diameter of 11 mm". Maybe only the left node is swollen, the one which previously had 13 mm? Argghh ... such a sloppy and unclear formulation.
We'd also need to know what clinical significance this would have. Tarceva must be continued, no question about that. The question is Gemzar, if such a finding, if it truly is progression, would warrant giving up Gemzar. I repeat, everything else is shrinking/disappearing. My mom is still PS0, thus a platinum combination is OK. Our preference is cis + alimta, with alimta bought from the pocket (because of the price, Tarceva and alimta are mutually exclusive).
If it's not possible to get this clarified in Romania and this issue is crucial, we must try a remote radiological opinion somewhere.
On May 7 you wrote, "The report said favorable evolution for all the lesions she had when she was diagnosed. However there are three new lesions:
- 2 new nodules in her right lung, 15 x 12 x 10 mm and 8 x 6 x 8 mm
- 1 enlarged left axillary lymph node (13 x 13 mm)."
Today you write, "The recent scan found that the lung lesions are gone, but mentioned “bilateral axillary adenopathy” of maximum 11 mm. Everything else is shrinking or even disappearing (the report mentions that some lymph nodes which appeared abnormal until this CT, now they look normal)."
Am I so off by thinking the - 1 enlarged left axillary lymph node (13 x 13 mm) from May and the bilateral axillary adenopathy of maximum 11 mm from today are the same thing?
It seems like a good report. What am I missing?
I'd be so happy to believe that they are the same thing ...
What does "bilateral axillary adenopathy" mean? I thought it means that there is an enlarged lymph node on the left, and an enlarged node on the right side.
If there is a single abnormal node on the left, which decreased from 13 mm last time to 11 mm, I agree that the report is perfect. However, if "bilateral" means that the lymph node on the right is also increased, that might hint progression...
Well now I'm not so sure the answer is obvious thus your mom's doctors would be the ones to define it. I thought of the bilateral phrasing as "being on the other side from the primary tumor", which becomes important if the cancer was otherwise curable. It's believed that once lung cancer moves from one lung to the next it is systemic and not curable. That's not at issue with your mom since she's had liver mets but radiologists writing the reports don't normally take that type of thing into account.
Hi costica, I'm sorry that you are having such confusion. I agree with Jim that the best solution would be to actually look at the images and see if there has been any change, or second best would be to call the radiologist and have him/her do it. You might want to ask the oncologist at least to do that if he can't look at the images himself.
Certainly I think the likeliest possibility is that everything is better and all the "bilateral axillary adenopathy" is simply the radiologist being more complete on this scan than the last. Usually if one side was now worse that would be commented on, and often nodes less than 10mm are not even mentioned even if they are there. If the left node was originally 13mm and now the largest is 11mm, then this seems consistent with the general improvement you describe. Depending on the radiologist "bilateral adenopathy" may or may not mean the nodes are abnormally enlarged, and even the measurements can vary quite a lot depending on where he puts the lines on the screen (not much difference from 9mm and 11mm for example).
In any case, this doesn't sound like there have been any changes significant enough to make a change in treatment. Hopefully the next set of scans will be more clear!
Thanks for your great answers!
It was easier than I thought, my mom actually called the radiologist directly, and this is his answer:
"on the previous CT the left axillary node had 13 mm and it was round. The right one was too small. Now the left one has 11 mm, it has an oval shape and in the middle it appears to be fat, so it is inflammatory. I wrote what I wrote on the report mainly as a checkpoint for myself for future scans. All lesions are shrinking, the treatment works".
So, it looks like excellent news!
Great news, costica! Congratulations on an excellent result, and I hope the treatment continues to work for a long, long time!
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
So So Happy to hear! May it last for a long long time!
By the way, my mom has had a severe/moderate rash from Tarceva and she tried everything, with not so much success. Last week she found a lotion prepared in the drugstore of her hospital, and it worked wonders. Here is the composition, for whoever might need an idea: chloramphenicol 1g, vitamin A, heparine 25.000 units, insulin (humulin R), zinc oxyde 5g, vasolanolin 100g. I was told that it is a cream normally prescribed to all patients in the hospital with dermatological problems.
We always appreciate finding new ways to control rashes. I know it can be a individualized remedy so it's good to get new recipes for those who follow.
Thanks so much costica!
My mom is doing fine, Tarceva + Gemzar, she had 9 infusions with Gemzar (one every three weeks).
She is due to have a CT soon, however she had a cold recently and she has been coughing for two weeks. It's not a bad cough, it was worse, now she is healing. Unfortunately she needs a CT scan until early December in order to have Tarceva re-approved. On the other hand, she doesn't want to undergo a useless CT.
I'd have two questions:
1. If a patient has a CT when he has a cold, is it possible that the results of the CT to be unreliable for treatment decisions (because of the infection due to the cold)?
2. If the patient coughs when undergoing the CT, will this affect significantly the image that is produced?
It's possible that whatever is causing her cough could appear on a CT, but it's just as likely that it won't, or that it will not look like progression of her cancer on the scan. If she needs the scan to continue treatment, I don't think it would make sense to forgo the scan due to concerns about a possible scan finding that may not occur.
A patient does need to lie still during a CT, but the technician should be able to work around a couple of coughs here and there.
I see that many links don't work.
Also, on the main page, how can I see the earlier articles? The last post I can access right now is "cancer ouija boards", but I know that dr. West discussed a study about Tarceva and chemo, for instance. I just cannot find it anymore.
If you run across a broken link, let us know specifically and we'll see about fixing it.
If you want to run backwards chronologically through the recent home page posts, click on "Focused Cancer Info" (just below the search box) and choose (in your example) "Lung Cancer". The most recent posts on that subject will be shown, and at the bottom left of that list you can click on "Older posts" to get the next most recent posts. If the topic you're looking for is not recent, you may need to search for it.
My mom had a CT, although she is still coughing.
1. of the many lesions she had at diagnosis (about 5), only one remained, in her liver, significantly shrunk, stationary in the last 3 scans.
2. compared to the previous CT, there is a new ground glass opacity (12x8 mm) in the right lobe. The radiologist doesn't mention anything solid inside.
3. enlarged lymph nodes (largest 21x10 mm), with fat in the center.
The conclusion was "favourable evolution, needs follow-up to clarify the ground glass".
Her blood work is normal, she has some small problems with hemoglobin, latest values (at 3 weeks intervals) 11.6 -> 10.7 -> 10.6 -> 10.9.
I read here about ground glass, yet I found mainly information about initial diagnosis, not a diagnosed metastatic LC. My mom is on Tarceva + Gemzar, and she must decide now if she will have Tarceva for another 6 months. If she gives up Tarceva now, it is forever. I am aware of the Impress trial. I'd have these questions.
1. If the patient is absolutely fine (PS 0), do you modify your treatment because of a ground glass opacity? The patient had a cold recently, and she is still coughing.
2. Given that a patient had Carbo+Taxol, Tarceva, and Gemzar, are there any other better treatments (of course, not AZD9291 or CO-1686, which are out of reach)? The patient would be able to tolerate and is willing to try Cis+Alimta, but that would be "the last bullet".
Thanks a lot!
In response to your first question, usually a treatment plan would not be modified without clear proof of significant progression. Ground glass opacities can progress very slowly, so it is not unusual to stay the course if the scan evidence of progressing cancer is meager.
As far as a "better" chemo regimen, the best one is the one that is effective. Of the approved treatments, neither pemetrexed (Alimta) nor doctaxel (Taxotere) has been tried, so those are certainly viable options with the greatest track record as second-line treatments. In most circumstances (although exceptions can be made), a patients does not return to a platinum doublet due to the effect platinum agents have on bone marrow function; more commonly, a single agent is used.
I really agree with Jim here. It's important to note that particularly with regard to interpreting the significance of new findings on scans, these issues are a matter of judgment, and that's supposed to be what an oncologist managing the patient's care should be doing.
In terms of subsequent treatment options, both Alimta (pemetrexed) and Taxotere (docetaxel) have a proven benefit in patients who have received prior chemotherapy.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Well, supposed, but ...
I think I read today everything related to "ground glass" here. Most of the topics deal with a ground glass opacity in the setting of scans for healthy people, and doctors said that the most likely cause is infection or inflammation. Do you say that, when you already have metastatic cancer, the most likely cause of a ground glass opacity is in fact cancer? My mom had a recent bad cold.
I know about the standard options, can you comment about having two platinums? Most articles on this site about that are pretty old, now patients live longer. Does it look bad to have 3 cycles of a doublet and then, 2 years after, to have another doublet? This question is not related to the recent CT scan, my mom doesn't think that the findings are so bad to try a platinum.
Here is what Dr. West has said about repeated a platinum doublet:
"[P]latinum tends to be associated with cumulative side effects and an increasing risk of a hypersensitivity reaction, and trials of second-line doublets vs. single agent therapy have shown that doublets are pretty consistently associated with a higher response rate, more side effects, and no improvement in overall survival compared with a single agent." - http://cancergrace.org/forums/index.php?topic=10677.msg86251#msg86251
In the same thread, Dr. Weiss elaborated on when exceptions might be made, although he is discussing repeating the same doublet:
"In a patient who tolerates a platinum doublet (platinum + partner drug) very well and has a good response that lasts a long time (at least six months, ideally at least approaching a year) I do consider restarting both drugs again (same platinum doublet). This situation is fairly rare, but if 4 cycles of a regimen can control disease for a year without any maintenance, then I consider the possible benefits of repeating the doublet potentially greater than the risks of additional side effects of 2 drugs and hypersensitivity potential."
The point is that in the Dr. Weiss example, the patient had a good, long-lasting response to the platinum doublet. In your mother's case, that can't be said since she transitioned to Tarceva quickly after finishing her first-line chemo doublet.
As Dr. West said, both the interpretation of the scans and selection of a treatment regimen are questions of judgment for your mother's doctors. Whether the general preference against repeating platinum should be disregarded is a question for those with the best knowledge of her situation.
There are certainly individual circumstances in which the general rule about going back to a platinum doublet can be broken as part of a thoughtful plan. Honestly, just about all good oncologists will use evidence but also don't adhere to rules slavishly, because there is such variability in the circumstances for individual patients. Particularly in a patient with a good performance status who tolerated doublet therapy well and has gone a good while since prior chemotherapy, I'd consider it, but I'd say I've used that approach in something like 1-2% of my patients...not most, to be sure.
As for interpreting a ground glass opacity (GGO), it depends on whether their cancer has looked like a GGO before. If not, and it has been really just solid, a new GGO has a very good chance of being a benign unrelated process. In contrast, someone with a cancer that manifests as GGOs is highly likely to have a new GGO be part of the same cancer process.
It is the first time a GGO has ever appeared on scans.
I have another question. What do you know about the schedule/dosage of Gemzar? My mom had like 8 rounds of it, one every three weeks. She wants to suggest to her doctor to have a round every four weeks, she is a bit worried that her hemoglobin is too small (10.9), and, if she will need a more aggressive treatment, she might not be able to tolerate it. Is there any data showing that Gemzar every four weeks is less effective than the schedule with once every three weeks?
There are various dosing schedules used with Gemzar, including three weeks on, one week off and two weeks on, one week off, and there is no evidence that one is better or worse than the other. If your mother is getting a dose every three weeks, there is nothing to say that changing to once every four weeks is less effective. Dosing schedules often need to be modified due to low blood counts, so it's certainly something worth discussing with her oncologist.
Yes, as Jim noted, gemcitabine (Gemzar) is most commonly given on 2 or occasionally 3 consecutive weeks followed by a week off. However, I have sometimes given it on an every other week basis. Giving it just once every 3 or 4 weeks is not really studied and isn't typical at all.
I would otherwise just say that a hemoglobin in the 10 range is very much expected while on chemo and doesn't preclude continuing on chemo without any significant change.
Does anyone know if it is possible to identify if Tarceva is counterfeit? Some prosecutors discovered a huge network in Romania and in Europe who were selling counterfeit cancer drugs through official distributors (major chains of brick-and-mortar pharmacies). Thanks.
I don't know that there is any way a consumer would be able to identify counterfeit Tarceva. Probably the best you can do is to purchase the drug from a reputable pharmacy (although if the reports you cite are accurate even that is not foolproof).
You could ask the pharmacy where you purchase yours if they're think this might be a problem for them and then ask if an assay was done. Take care, Judy
I will just add that all pills/capsules have a unique identifier so that we can always identify the medication based on color, shape and ID code imprinted on it. For Tarceva (erlotinib) made in the US (because there are some legitimate generics available in other countries), it is round, white tablet with the dosage strength (25, 100 or 150) printed on it along with the letter T or the word "Tarceva". If you ever have any questions about the integrity of it though, you can always ask the pharmacist.
Christine M. Walko, PharmD, BCOP, FCCP
Personalized Medicine Specialist
Moffitt Cancer Center, Tampa, FL
Does anyone have any updates about AZD 9291 for acquired resistance? To my surprise, I found out that AZ launched a phase 3 study to compare their drug against Tarceva or Iressa in the first line. Would this hint that the results in the clinical trials they were running for acquired resistance are not so good, and thus they put up the effort to launch a new study, in the first line? :(
I wouldn't assume that it's failing in the acquired resistance context, I think launching this trial just indicates that they are seeking evidence that AZD 9291 is actually more effective that Tarceva or Iressa in the first line setting. If so, it could be approved for initial treatment (a much larger market than the acquired-resistance group) and possibly supplant those drugs in that context.
Hi Costica, I will just second what Jim said. There is no reason to think AZD9291 will not be effective in EGFR mutation+ NSCLC with acquired resistance (AR), specifically with T790M+ AR, based on what we know publically. Doing a first-line trial in patients without AR is simply the company trying to get an additional approved indication for their drug, and is very much a business decision. And it may end being more effective than erlotinib and delay or prevent AR, although that question is still completely up in the air, so I think it makes sense to test it. I would not read anything ominous into this!
My mom had a CT scan on May 15 and the results are fantastic. A single spot on the liver which has been stationary for more than a year now, and really nothing else (well, there are some micronodules of about 3 mm, but I guess those are normal).
I only hope that the brain is OK...
150mg Tarceva + half the doze of Gemzar. She is still tolerating the treatment, although the side effects have begun to pile up.
Great news, costica! Thanks for sharing such a good report, as we always enjoy hearing positive news. Wishing your mom continued success with this regimen.
My mother had a scan late in December, the results are stationary. She continues on a (too high) dose of Tarceva and Gemzar every three weeks.
I don't have any burning questions now. I would have some questions about new agents/some videos that were posted on this site lately, but I got the understanding that these things are no longer discussed in detail. And, tagrisso and/or liquid biopsies for T790M are not yet available in Romania, even if paying from the pocket.
Thanks for your help!
It's good to hear your mom's stable. I hope she isn't experiencing overwhelming side effects. 150mg tarceva is the standard dose. There's no dose suggestion for combo of tarceva with chemo and isn't being used very often. Our faculty are putting most of their efforts into blog posts and most recently video discussions. We have quite a library of info on 3rd generation drugs like tagrisso and tests for t790m. There's also a lot of info about options being used and favored for 1st gen tki like tarceva and iressa when it no longer works for a couple of places but otherwise keeps cancer at bay. This link is to our egfr blogs and videos in chronologic order. Most recently focus has been on acquired resistance so there's a lot on that up front. http://cancergrace.org/lung/category/lung-cancer/general-lung-cancer-iss...
I hope your mom does well for a long time.
Well, her side effects are bad. She knows everything what was written on this site, examples of clinical practices and doses used by top doctors. She chooses to stay on the standard dose for fear of brain mets - those would be a tremendous problem in her country.
As for the second part of your answer, I benefited a lot from the countless discussions between doctors and patients. Some blog posts were great (an example: http://cancergrace.org/lung/2013/01/23/acquired-resistance-algorithm/ ). I benefited much less from the video discussions. And I remember at least two cases when the videos hinted at some publication, but I was not able to find it despite trying *really* hard. One can no longer ask questions related to the videos - this would have solved it, as I am sure the author of the video could have replied immediately with the exact source. So, unfortunately, for me it looks that the site took a serious step back. :(
As you know you are welcome to post those questions on the forum and refer to the video by pasting the link. We have changed the way in which we use our faculty of oncology specialists. They are all practicing oncologists with the typical load of their own patients and research obligations. They participate on Grace with no or sometimes very little monetary exchange for their input. We are trying to use their time as wisely as possible. I do know how different it is to have Jim and me answer the questions we can and paste quotes from other discussions. We do have our faculty on hand to field questions we aren't able to answer. I think above all for most every question there is a bookful of input possible and when I started using Grace there were 3 specialists at any given day/week answering questions and discussions among them often emerged. That was an earth shattering find for me when my husband was so sick. I wish we could still have the forums move in that way. Alas, it proved unsustainable and I know it's missed. If you have productive suggestions we are more than happy to hear them. This is a new frontier and always happy for input.