Before I answer you let me just let you know how it warms my heart that you take time to read and respond!
That's exactly what the onco said...that we can go back to alimta. The suggestion of Crizotinib is merely to get the schlep out of the way, should we have to go there at some stage. And yes, we lowered the tarceva to 100 mg since last month - also somethong the onco asked. Inbetween P also skipped maximum of three days as we tried to manage the rash, which is the worst side effect.
I'm glad your second opinion visit was a worthwhile experience. To address your question on the value of surgery for mesothelioma, it's done in some patients and MAY be helpful. In general, surgery is favored if there isn't mediastinal node involvement or extensive spread of the mesothelioma, though it isn't established that surgery is curative except in quite rare cases. There are certainly patients who can do well for years -- sometimes many, many years -- with mesothelioma, and many of them had surgery to remove the pleural lining (a pleurectomy) or entire lung with the pleural lining (extrapleural pneumonectomy). The question is whether they were going to do very well anyway, whether they undergo surgery or not, and the people offered surgery are just the selected subset who are healthiest, have the slowest growing and least bulky cancer -- in other words, being a good candidate for surgery may be the reason you do well, and the surgery may or may not actually improve the situation. Nevertheless, it's certainly feasible to do surgery for some patients with an early, non-bulky mesothelioma, but it's incredibly important to be evaluated by a surgeon with expertise in mesothelioma when considering such an idea.
Dr. Howard (Jack) West
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
Thank you so much for the detailed response dr West. I have also read (and am still busy reading) the information about mesothelioma on the site. I am foreve grateful. Thank you! Thank you!
I have some questions, please:
1. If the result of a lung function test indicates that a patient has 50% lung capacity, how does that affect the current treatment plan of the patient, I.e is additional treatment required to specifically address the issue of reduced lung capacity?
2. How reliable\significant are lung fuction tests for a lung cancer patient?
I would appreciate a response to these questions and am just adding some update notes:
We are still anxiously awaiting the results of the new lab review of P's biopsy tissue. Meanwhile, P has begun researching alternative treatments which includes the Budwig and Gerson treatments. I have my own (I daresay 'informed') opinion on these, and suffice to say I am not a believer. However, I guess it is my duty to support P in whatever he decides to do, and I am reluctantly trying to be supportive in this venture. At least we have an agreement that we will not in any way stop conventional treatment. It does worry me, however that these alternative treatments might interfere with the conventional (in our case, Tarceva) treatment. Any inputs of the possible interference please?
I think I'm losing my nerve.
Thank you for your attention.
The issues about lung function would likely be a consideration only in anticipation of potential surgery or radiation, since these are the interventions that lead to a loss of lung function. People with markedly reduced lung function may have some real functional compromises with radiation or surgery, so the doctors involved may recommend against these interventions if it looks like the risk might exceed the benefit.
As for the alternative therapies, I share your skepticism. My leading concern would be significant weight loss from strict diets, which we really prefer to not see, but there isn't enough actual research to say that it's harmful, helpful, or has no effect either way.
Thank you dr West. When radiation and surgery are not options at all, does it mean the patient has to live with the reduced lung capacity and, I presume, manage symptoms that arise as best as possible? Also, is there any truth that reduced lung capacity creates an enabling (reduced oxygen) environment for cancer to grow more rapidly. Please pardon me if these questions are silly.
Not silly. Yes, there's no clear best answer to what to do when lung function limits your option. You either accept higher risk and press on with treatment or, more often, don't treat and manage as best you can.
I don't know of any evidence that reduced lung capacity in and of itself facilitates cancer. I have actually never heard that suggested in the lung cancer world or teachings, so I suspect it's misinformation.
Thanks again dr West.
I have to arm myself with knowledge because many new issues are now arising as a result of P's search for alternative treatments. I need to keep the balance. He also visits Grace and has great respect for the valuable information to be found here. However, all these alternative treatments give quick fixes and, I guess,making them look very attractive.
The day before our second opinion oncologist visit, we went to see a pulmonologist. Amongst others, he ordered a lung function test and afterwards declared very non-chalantly that P has only 50% use of his lungs and that the picture looked bleak. This information was valuable but unfortunately he just left it at that and us in the cold. While the oncologist we saw the next day was very upbeat and discussing the many options available to us, I've only now realised that the Pulmonoligist's response remained with P.
Meanwhile, P has recently developed a slight pain in the middle of the chest and around the area (that's how I visualise it) where the malignancy is in his right lung. I was looking forward to the PET scan, which was supposed to be tomorrow, but which P asked me to postpone to next week because he wants to give opportunity for the alternative treatment to kick in....it apparently does, within 5 days.
I will update as we move along.
Just in case you haven't found these, the American Cancer Society has informative pages which discuss the Gerson and Budwig alternative therapies:
Omega -3/Budwig: http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryan...
<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>
Warmly appreciated, Jim.
We got the results of P's PET scan on Friday during our (2nd opinion) oncologist visit.
According to the PET scan there is no cancer progression. The cancer is still in the original spot of July 2012. Our oncologist says its more or less a cm of the pleural lining of the right lung affected, SUV 1,5 to 2,5. There is some activity in the lower left lung (new to us), very low, which our oncologist refers to as possibly a 'sympathy' response to the affected lung.
Oesophagus has a 4,6 suv. This is the area where P complains about..some pain. Many years back, he had a hernia operation which our oncologist thinks could be the reason...that there is some inflammation going on there.
Except for above mentioned, all is clear. Not even the hilar node showed up (hilar was never biopsied, only showed up on CT). Oncologist reckons whatever treatment P took, it must have worked. We obviously feel blessed. Ten months from original dx and no progression.
We have not yet received results of the biopsy review because the previous lab supplied the new lab with the slides only, and not the actual tissue. Onc ordered EFGR and KRAS testing. They also want to clear the issue of nsclc or mesothelioma.
Thank you for reading and the valuable information here that helps us be our own advocates.
That sounds very encouraging. Congratulations to both of you, and thank you for sharing the news.
Wonderful news, Delia! Thank you for updating us. Whatever else is going on, I hope your husband feels better soon. . .
Fantastic news, Delia! Thanks for letting us know so that the entire GRACE community can celebrate with you!
Delia, This is wonderful news. Congratulations!
I hope you this last a long long time.
Thank you for sharing our joy. Janine...loving this breather! Laya....finally got your name right and sooo embarrased that I kept calling you Layla. Perhaps my foggy brain!
Wonderful news! I'm very happy for you and your family and look forward to reading more reports similar to this one.
Excellent news Delia, I hope the good news keeps coming. --mikem
thanks Sherry and mikem!
"Ten months from original dx and no progression."
Well, next week, on 24 July, will mark one year since my husbands's diagnosis. What a ride!
I would like to give a brief update and pose two questions.
The last PET result showed stable disease. On one of those nights where I couldn't sleep (for no apparent reason, lol), I scrutinised the PET report and picked up a mention of lymphangitic carcinomatosis (sp??) And emphysmema something. Because I'm Cancergrace smart now ( lol), I searched and saw the many posts of these mentions oftentimes being 'soft calls' by radiologists, and coupled with the fact that our oncologist didn't mention this, as well as the fact that my husband really doesn't seem to have any worsening breathing or other symptoms, I have decided not to raise this as a problem anywhere yet..or for now, at least.
KRAS, EGFR and ALK negative, and stains show more towards adenocarcinoma than asbestos. I'm happy we had these done, even if the ALK- is disappointing. We continue with 100mg Tarceva. However, onco mentioned the PD-1 trials, which are not yet in SA...onco says maybe in next six months and would like to enroll hubby in the trial, when it becomes available here. When I search about this trial, is see that up until phase 2, 'requirements' are for a solid tumour. P does not have a solid tumour. Could someone please enlighten me about any new develpments, I.e whther this criteria might have changed by now, please.
FeistyD has included me in her emai group of the pd-1 trial and I'm learning a lot there too. So greatful.
My second question is about the Tarceva tx. Its been 8months on Tarceva. Things have remained stable all along. Hilar node completely gone on PET (was never biopsied, so just assumed cancer). The pleural lining situation has never changed, albeit those an increase in those reticular lung markings. In this situation, is it safe to assume Tarceva is indeed keeping things stable, as opposed to considering taking a treatment break, or trying a chemo that might ..
(Cont)...actually work to on the pleural lining. I have asked thos before, and was advised that stable is good and the circumstances do not normally warrant treatment change. I just wonder whether, in such a setting, the status quo remains and a rethink of treatment is sometimes an option.
I apologise in advance for the long post and hope I do not irritate with might appear as a repeat question (it isn't to me).
Thanks you always.
Hi Delia, So good to hear the scans are stable and the one year mark! I completely understand your statement about the question not being the same to you. Lung cancer is such a dauntingly complicated disease that one can't be sure your understanding is right. But yes, ;) it is the same question and I imagine the same answer applies thought I've not read back through the thread. As long as a treatment is working and side effects are manageable doctors really like to maintain status quo. However if your husband needs a break then a break may be in order as long as he is followed very closely. Changing to another drug especially if it's available anytime isn't normally done if all is stable.
It may be reasonable to move onto a trial drug when it's available just to have the chance at a promising new drug that may not be available otherwise.
As for the trial criteria, there are several PD 1 and PD L1 trials and they all have the own criteria. Many want measurable tumor (by CT) to enter the trial. In moving forward on any particular trial you would need to speak directly with the researchers in charge, but measuring is what the trials are all about.
About the soft calls on the PET report you're right again (and BTW excellent use of the Grace site!). As you probably read the doctors often warn about looking for trouble when there is already too much trouble on our plates. Again I understand your worries, I've been there. As I've moved through the last 4 years holding my breath, it's just one more thing I've tucked away (probably after questioning the onc at an appointment) until nothing further came of those soft calls.
It's good to hear from you and know you 2 are moving along with life, stable
Your husband is stable, that's wonderful news!!!!
I certainly understand how you feel asking a question even if it is a repeat. You can read and read and read but still need to ask when it pertains to your particular situation. It's a comfort to get an answer directed towards you.
And, I know it's easier said than done but, try not to worry about the "soft calls". If it wasn't brought to your attention then it must not be anything too concerning.
Best wishes to you and your husband,
"It’s a comfort to get an answer directed towards you." Indeed, Lisa, and thank you so much.
Janine, you have this ability to always say the right thing in just the right way. Thank you.
To add to the update: While I'm aware that CEA is not a reliable indicator, P's CEA at diagnosis was 10 and its 3,4 now.
Yes, we realise how very blessed we are and remain humbled with how things worked out for us so far. Janine, P tolerates Tarceva pretty well. The rash is the main side eFfect but we have it fairly well under control with the reduced dosage and also by skipping a few days.
I am very happy to hear that it has been one year. Hopefully I can answer some of your questions.
1. Many clinical trials require 'measurable disease' such as a solid nodule in the lung or liver or lymph nodes that must be of a certain size to determine if the drug in question is able to induce tumor shrinkage or stabilization.
2. In general, if there is no clear evidence of the tumor worsening on the scans and your husband is not having new symptoms that may be an indication of the tumor getting worse than usually the recommendation is to continue the current medication, especially if the side effects are minimal.
3. I would recommend seeing if there is a center that can perform additional gene testing such as RET, MET, HER2, BRAF or others (for example, hospitals that participate in the Lung Cancer Mutation Consortium which is looking at these genes and others in patients with lung adenocarcinoma). Although there are no FDA approved drugs for these genes yet in lung cancer, a positive test might make your husband eligible for a very promising clinical trial.
I hope this helps.
Robert. C. Doebele, MD, PhD
Thank you so much dr Doebele.
Unfortunately those gene testings are not done around here.
We are happy for now that things are stable and will be watching all spaces for other options. They way I see it, we still have several options available.
Thanks once again.
We are just back from our three monthly CT scan (with contrast) and our oncologist visit. Oncologists says basically stable and we were of course very happy once again. P is on tarceva for almost 12 months now, EGFR negative. Oncologist (and CT report) mentioned a new nodule 'along the right oblique fissure'), not seen before. Pleural effusion continuous to improve. The honeycomb\reticular markings have increased slightly and there are also new areas affected, still in only one lung (right).
On returning, I had a closer look at present and previous reports:
According to the PET of 3 months back, the two pulmonary nodules were not visible. CT with contrast on Friday past, shows these nodules are still there. In fact, previously (before the PET) it was said that the nodules had shrunk to 8mm, while Friday's CT report indicates that they measure 12,5 x 12.5mm. The new nodule is 17 x 15mm.
1. Do scans (or radiologists) sometimes make these kind of mistakes when they measure nodules?
2. Does it happen often that nodules do not show on a PET but show up in subsequent CT scans?
3. Our oncologist says the new nodule does not worry him much at this stage. I do note, however, that this new nodule shows up measuring larger than the other two ones of original dx. Is it standard procedure not to worry much at this stage - to wait and watch?
4. The radiologist report talks about 'background bibasal as well as peripheral interstitial disease'. Oncologist did not touch this topic. PET three months prior spoke of lymphangitic carcinomatosis (sp), which oncologist also did not touch on. My right mind tells me that certainly there is something there that warrants attention and my question then is what the typical treatment would be to prevent\control this seemingly increase in these markings.
5. With this background information, is it generally acceptable to continue Tarceva?
P is doing well. Eats well, sleeps well. Maintains weight. I must say though, tjat I have noticed an increase in SOB - not debilatating, but definately worse than before.
Thank you so much for taking time to read and respond to this.
Let me correct my OWN confusion in the previous post. I don't know how to edit a message posted, unfortunately.
I always confuse 'lymph nodes' with 'nodules' - please pardon this stupidity!
So, please ignore the questions about the pulmonary nodules. I will post again about hem when I have my head straightened out.
Ok, Delia. Try to clarify the situation first with his oncologist, and then if you can identify a specific question or two based on that, we'll be here. Just remember that we can't weigh in on the significance of subtle, questionable progression on scans we can't see in patients we don't really know.
Good to hear "basically stable"! :)
Thank you Lisa. Yes, we have learned over the last year how gOod 'stable' is and we are happy.
Dr West, I am still waiting on a response from our oncologist regarding the nodules\lymph node situation, so I shall not tread there for now. Just one question though, for now, please:
In a situation where, over a period of 8months there is persistent increase in reticular markings\honeycomb formation on the lung, is it standard procedure to watch and wait?
While I have read your statement that doctors should treat patients and not scans, and certainly my husband is really doing good, except maybe for MY observation of slight increased SOB, I cannot help but wonder whether the should be some treatment intervention here.
There's no standard in that situation, because you really can't measure progression in that setting the way you'd measure a mass getting larger vs. smaller. If it's just a matter of shades of gray/subtly increasing thickness of a reticulated pattern, it's kind of like a frog very slowly heating water (sadly, if they can't detect the change, they stay in until it boils, so we should try to do better). Things may be getting a little worse very gradually, but when to change plans (jump out of the water) is very subjective. In such a setting, I would likely use the variable of how the patient is doing as the critical criterion.
I hope that helps.
Thank you dr West
Wishing you all a wonderful 2014!
First the bad news: The original lymph nodes have grown bigger. Also the two pulmonary nodes -they almost doubled in size.
Our oncologist suggests going back on alimta and cisplatin (P had good response to it as a first line treatment), and we are hopeful that he will get the same, if not better, response.
The good news: our onco feels that, because P has had such a good response to his treatment so far, we can consider surgery, should the chemo regimen shrink these lesions significantly. He feels that P's cancer is either indolent, or P is just very sensitive to treatments. P is egfr - , yet he stayed stable on Tarceva for ±13 months. He feels that P has 'earned' a surgery consideration. This is of course an 'out of the box' approach that we are willing to take.
P is otherwise very healthy and has been asymptomatic since his diagnosis, 18 months ago. So...we will probably start the chemo in two weeks' time. Starting the B12 and folic acid from tomorrow.
Good luck with the upcoming chemo. I do believe that surgery or another local therapy like radiation is a reasonable consideration for some people with an indolent lung cancer, but I think it really only makes good sense if there is a single area that is far outpacing other areas of disease in its rate of progression.
By all means, see how things go, but please remember that surgery has significant risks, in terms of both quality of life and potential serious complications, and shouldn't be undertaken lightly in a situation in which it is truly unlikely to confer a significant benefit. I would say that if there are a handful of areas growing at a perceptible pace (which I might define as this: you can see a change in these areas on scans done less than 4-6 months apart), you're unlikely to do a patient any favors by doing a local therapy.
Update on my husband
So, after 4 alimta/cisplatin infusions, my husband's scan showed significant shrinkage. We had a 50% shrinkage of all the areas under attack: the RLL and several mediastinum and hilar lymphnodes. This is of course excellent news and we are happy.
However, it was less than we expected in order for surgery to continue and therefore he will go for another 2 of same chemo regimen (in fact, one done already and another to go at the end of this month).
Something else that is a concern to us: The RUL has doubled in size and now measures 2cm. This is the same nodule that showed shrinkage in the previous scan when everything else had grown. That was while my husbanf was still on Tarceva.
We are wondering whether anyone has had such an experience...that there is significant shrinkage in all but one nodule while on alimta/cisplatin. And we would like to know how it was handled. Our onc doesnt seem to worried about it. We are, especially since the scan report mentioned for the first time that the nodule is spiculated.
My husband is also experiencing an increase in SOB these past two weeks.
Would appreciate all input.
Congratulations on all the positive aspects of your scan report. It is not at all uncommon to have what is known as a "mixed response" in which some (in your case, most) of the areas of cancer are responding well to treatment, while one or more areas show signs of progression. It may be that the nodule which has grown is not sensitive to the current chemo, but was sensitive to Tarceva. In such circumstances, oncologists at times opt for a combination of chemo and Tarceva or in the case of one growing nodule surgery or radiation to that nodule. You may want to discuss these possibilities with your husband's oncologist.
There are two videos and a post by Dr. West on the subject of mixed responses and how to deal with them here: http://cancergrace.org/lung/tag/mixed-response/
It's hard to know what to make of the apparent mixed response and increasing shortness of breath, though the next scan should be informative.
If there is cancer progressing with a history of confirmed advanced disease, I'm afraid that it's quite likely that surgery will not be fruitful, the risk being extremely high that further disease will appear after surgery and that it would have not helped but would confer all of the challenges and risks of a surgery.
Please do keep us posted.
Thank you dr West and Jim. I will keep you updated.
Of course surgery is our first prize but we do understand those dynamics that you mention, dr West, and surgery will definitely be a very careful consideration, given those dynamics.
Latest results of my husband after 6 alimta/cisplatin: MRI (first since dx) Clean! CT and abdomen: Abdomen remains clean. 10% shrinkage of hilar and mediastinum nodes. RUL and RLL stable. Yayyy!!
He remains non-symptomatic - on 24 July 2014 this will be exactly 2years since dx.
We will have meetings with the surgeon during this coming week, and I guess a number of tests/investigations, to decide on the possibility of surgery.
I have a question please. Im thinking of the possibility that the surgeon advises against surgery. Typically, in this setting, what is the next course of action? My husband has had his last chemo just over a month ago.
Perhaps to add...
I think my concern of the SOB might have been an over call on my side. Anyway, its not obvious to me anymore and my husband thinks my observation of SOB is exaggerated. ..
So we saw the thoracic surgeon. He feels that my husband's case is an enigma. Because the only biopsy proven cancer is the pleural lining, he wonders whether the extensive interstitial disease, the rul and rll nodules and the hilar and mediastinum nodes are even cancer. He thinks it might be relatef to rheumatoid arthritis - my husband was diagnosed with ra in his early twenties. We have only learned now that ra can also cause ild.
He then referred us to a pulmonologist, who did a lung function test. 45% lung capacity. This coming week we will do a split perfusion scan - all still to ascertain whether my husband is fit for a right pneumactomy and of course quality of life afterwards. He did say that, while he will remain optimistic and while this is not the standard thing to do, that he will be completely honest with us once all results are in.
Surgeon hasnt mentioned bronchoscopy. He did say that a needle biopsy might not be effective to establish the cancer.
Im really a bit lost now and will just wait and see.
If surgery is ruled out, I wonder what treatment options remain? First line was alimta and cisplatin x 4, just over a year on tarceva and has now completed 6 x alimta and cisplatin.
Thanks for any responses.
I'm sorry I missed your post on July 5, but congratulations on such great scan results!
There are a number of options at this point. Since all of the cancer shrank or is stable, it is possible to adopt a "watch and wait" strategy, leaving all treatment options open until progression is seen. Another would be maintenance Alimta, since he seems to have responded well to it. Other than that, other standard chemo agents could be used. He hasn't had a taxane yet, so either Docetaxel (Taxotere), which is approved as a second line treatment, or Taxol (Paclitaxel) would be options. In addition, there are other drugs which are approved for first-line use that might be helpful, such as Gemcitabene or Navelbine. Finally, there are many clinical trials available which could be tried. Also, some oncologists would consider returning to Tarceva if he had a good response to it for an extended period. Any or all of these could be discussed with his oncologist.
I think I understand that it's hopeful that surgery can cure your husband of cancer? But at the same time surgery can create more problems than help? The data show an expected decrease in lung function from a pneumonectomy. Those working with him have the best idea on what can be expected. It sounds like he has a dedicated thoracic surgeon on the team and that's the most important person on his team who has the best understanding of how your husband may fair during and after surgery.
I don't know if this is part of what you're questioning but it's something to think about if surgery is thought to be too risky. The only way to know how your husband does without tx is, well stop all tx. This is often done in combination with a close eye so intervention starts when needed. Some oncs will keep close surveillance with CTs every 6 weeks and others up to 3 months while the patient and those living with and caring for keep a close eye on physical changes.
I can't say how much your last post sounds like my husband's, D, cancer history. I think you can get the gist from my sig that I often wonder if there was any other cancer besides the primary. It will be 5 years since surgery Aug 25 after which he completed tx that included 10 months of tarceva 6 cycles of doublets chest and spine radiation and gemzar in total 3 years of treatment. We both stop smoking for the last time just before his surgery. Today he's NED (no evidence of disease).
No matter what happens moving forward I've become an advocate of using as little tx as needed to remain stable. Our scientists and clinical researchers have given people with lung cancer more time to live life, enough to play the tx cards with finesse enough to make a world of difference. And the science is just getting better every day.
One other issue I'd like to raise is that it may be feasible to do a wedge resection, removing a small bit of lung tissue, often just as a minimally invasive surgery through a port, to clarify whether the interstitial markings are RA or cancer or something else. A pneumonectomy is a MAJOR surgery with very significant effects, and a right-sided pneumonectomy is more of a hit than a left-sided pneumonectomy, because the right lung is larger (the left lung has to make room for the heart).
We always want to "give the patient the benefit of the doubt", but if there's a way to get a better sense of the odds before undertaking a risky procedure, that's always wise. The last thing you'd want to do is pursue a pneumonectomy if it didn't appear it would be helpful.
Also, because the stakes are very high with the question of undertaking a right-sided pneumonectomy, if there's still any open question about its value, this would be a situation in which an additional expert opinion or two could be very helpful.
I wrote a very long response to each of the 3 responses above - and then my post disappeared
And there it happened again!! Lets try again...
The jury is out on the surgery: No surgery.
We will see our oncologist next week after a PET and other reports are in and discuss further.
Disappointed but not hopeless. We will continue to plant flowers because we believe in tomorrow.
I shall post more once next steps are clear.
PS : Today is exactly 2years since dx
....and it has always just been better than that day, 2 years back.