I also thanked you for the very informative responses.
I'm sorry both for the decision against surgery and for the difficulty you had in responding to the posts. It's maddening to take the time and mental energy to provide a thoughtful comment and then have it vaporized. It's happened to me, though thankfully only rarely.
As for the recommendation against surgery, it would be worse to undergo that surgery only to have it cause harm and not help. I don't know if that's any comfort, but the key is really whether the intervention would offer a realistic probability of helping: if not, offering a treatment likely to be futile is no favor.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
This might be long. Please bear with me.
Following many lung tests and a diagnosis of interstitial lung disease we had a consult with our oncologist this past monday. Onc says they have never seen such high rheumatoid arthritis markers in a patient, especially after hubby has just finished chemo recently. Apparently chemo is also some anti inflammatory of some sorts against RA..or something of the kind. So, its highly likely that ild is as a result of RA. Biopsy to confirm is not recommended...too high a risk, based on the condition of the lungs at this time. Chemo break and work with rheumatologist and pulmonologist. We ask onc if nodules in rll and rul, as well as lymph nodes in mediastinum and hilar are even cancer because they were never biopsied. Onco agrees that they might be a result of ild. Thoracic surgeon brought this up when we consulted with him.
A little history: only biopsy ever was the pleural lining at dx because of the pleural effusion and this was positive for nsclc adeno, metastatic. No primary tumor ever showed PLUS cancer in plural lining never showed on any scan.
My personal concern, which I know you cannot answer, is: does hubby even have cancer? And I know this is far fetched, because we had a 2nd laboratory test the same tissue and got same results. Im thinking of having this tissue tested by a 3rd laboratory. ..or am I getting cookoo?
Any thoughts, please? Is there a proof that RA causes lung cancer? Are there similar cases? What are other investigations to consider?
Hubby is doing well.
Thanks for any inputs.
I'd think there are no answers but I'll ask for comments from a specialist. If cancer cells were seen by 2 labs then I can't imagine both are wrong. My understanding is once under a microscope it's pretty cut and dry if they see cancer though the type is sometimes in question.
It's good to know your husband is doing well.
A primary tumor is often not seen on the scans and tumor in the lining of the lung (pleura) can be difficult to see on scans (it may just show up as a thicker grey line). RA and other inflammatory processes are associated with a higher risk of lung cancer. The pathology is the gold standard for diagnosis.
Its been a while since i last posted. Been a difficult time- our only child, passed away a few days after his 20th birthday.
Thanks Jim and dr Doebele for the last responses. Since this last time, my husband has been diagnosed with mixed connective tissue disease. Its thought that its not RA, as he was diagnosed when he was 19. I shall not bore you with these details. Point is, the ild probably stems from there.
My husband remains basically (barring some sob)asymptomatic and there is general consent that none of the specialists will treat until symptoms appear. However, he tested positive in a blood test for TB last month and is presently on meds for it. Onco tested him when he spoke of the sob in our last consult. This consult, by the way, showed stable, after 4 months of a chemo break. Still on chemo break.
Onco has applied for afitanib - i think compassionate use because it will be free. My question: while my husband did well on tarceva for 12 months, he is egfr-. Im wondering if afatinib will benefit him in such a situation.
Another question: my husband had 4× alimta and cisplatin as a first line (70% shrinkage - then we asked for switch to tarceva), then tarceva as maintenance and then 6x alimta and cisplatin upon progression. Silly question - is he considered as having had 3 lines of treatment already and, what would be the next treatment that a patient in his situation would get should there be progression?
Thanks and blessings,
Hi Delia, Am I right in understanding there is no imaging evidence of cancer in your husband? If so I hope you'll read this blog post by Dr. West. It describes how he treats only as needed. It's titled for slow growing BAC but he makes clear that it's the approach he takes on any slow growing lung cancer starting at the second paragraph under the algorithm,
"Finally, I’ll say that this concept isn’t or shouldn’t be unique to multifocal BAC. There are other slow-growing cancers, and if I see someone with a slow growing mesothelioma or invasive lung cancer or bladder cancer or prostate cancer, the question of whether there is clinically significant progression should come up. Though there are many people who absolutely need all of the aggressive anti-cancer treatment they can get, we treat lots of people with more therapy than is there best interests: part of that is a cultural bias among patients and doctors that we must go in, guns blazing, to meet our enemy full force. Part is that the incentives, in the US health care system at least, is to give the most care that is defensible and will be paid for.
"I don’t know if most people in this situation can accept remaining untreated for months or years at a time, even knowing that they have an indolent cancer. But I would advise people to think about some of these slower-growing cancers like diabetes, high cholesterol, or obesity. They represent a chronic risk to survival over years and often decades, but most people don’t lose sleep over obesity or their cholesterol levels and don’t rush into a triple bypass done 10 years before it might be needed just because a paper might show that people who undergo a prophylactic cardiac bypass 10 years before they would have had a clinical issue are still doing well 3 years after the surgery." http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/
Hi Janine. Im answering and will go back to reading the rest of your response just now.
Pleura biopsy at diagnosis was positive for nsclc adeno. Presently, ild and rll and rul nodules that are presumed to be cancer.
Hope that makes sense.
I've asked a specialist to comment.
I'm so sorry about the loss of your son. He was so very young and I cannot imagine. Please accept my condolences and hopes for good moments.
With much respect,
Thanks Janine. Needless to say, we are shattered.
The info you provided sounds pretty much applicable to my husband's case. Its 2 years and 5 months since diagnosis and still confined to original areas. Only progression was 12 months after tarceva - 46% increase that responded to the alimta and cisplatin and has since remained stable.
My question is basically to educate myself for future purposes - a bit over the top planning ahead, i guess.
Delia, I am so sorry for the loss of your son. My thoughts and prayers are with you.
I'm so sorry about the loss of your son. Regarding lines of therapy, I'm not sure that it matters that much what you call this. In my mind, I'd call that two lines of therapy since only two regimens were used. But, if a patient of mine were trying to get on a trial that required 3 prior lines of treatment, I wouldn't mind calling this three lines. Your more practical question was what next, if needed if the cancer grows again. First, when there's a lot of smoke in the air, careful multidisciplinary conversation can be helpful. Stated another way, a lot of expert eyes might be needed to make a best estimate of whether spots that are growing are cancer or something else. If truly cancer, there are many options available to the patient without EGFR mutation who has received cis/alimta and erlotinib. First, comprehensive molecular characterization to look for ALK, ROS1 and other changes might be sought on existing biopsy tissue to look for other actionable molecular changes (sorry if that's already been done; 9 pages of posts are a lot to skim through!) Next, there are many active FDA approved agents such as gemcitabine, taxol or docetaxel. There are many promising clinical trials such as immunotherapy trials. Finally, if a lot of time passed before the cancer grew again, we often consider repeating a treatment that worked well in the past. I don't tend to use cisplatin for metastatic cancer, but pemetrexed + carboplatin would be very similar with less side effects.
Thanks Sherry. Warmly appreciated.
Thanks dr Weiss and sorry that i sent you on a chase for our history. Clinical trials in SA are hard to come by but im happy that we have a fair amount of options available. I appreciate your time.
Delia, I know what it means to have options not to mention the hope that you may not need to use them. So congrats it’s a biggy :) .
Please don't worry too much about Dr. Weiss needing to read through all these pages. I asked him specifically for that reason, he was magnificent when I was asking for info about my husband back in 09 and 10 and beyond. Today he's the vice president of our Board, I don’t ask him to comment often enough so I felt alright about putting this on him.
We can make it easier for everybody though: Instead of one thread for your husband you can keep this one for updates so members, friends and family have a place to go for updates and words of hope and encouragement. Then when you have a specific question begin a new thread just about that. The docs and those with info to share can read your signature and you can add pertinent info and questions in the title and body of the thread. That way those answering have only the info needed and those with similar inquiries can find info for themselves. Plus I feel more able to ask one of our faculty to join and not leave it to Dr. West to do it. The person who I think does this best is Debra aka double trouble. She often pastes links from her update (new new plan) thread to the question thread to keep the update thread in the know. It also weeds out most all but pertinent info from the question thread and leaves everyone comfortable to be personal on the update thread. It's a win win win... situation.
This is all so new we have to carve out the workings as we go. Please, no worries. We have enough of those. :wink:
I am so sorry--I did not mean to imply that I minded skimming your history or that you sent me on a chase. I realize how it could have been ready that way, so I'm sorry; I really meant to excuse myself if I had missed some detail. I'm even sorrier to hear that trial options are limited--there is some very promising stuff that's not yet formally approved anywhere. That said, with how well some of these trials are going, this new stuff should be approved relatively quickly. Any rate, please do post again if any of us can help with more info.
Anyone who goes back a year or more knows how absolutely dedicated you are to Grace, to our cause of educating laypeople. We just don't see your face around the forums as much which makes me think I may need to call on you more often. ;)
Thank you a million times,
My husband passed away on 27 July 2015, 3 days after the 3rd anniversary of the day of his diagnosis.
He had been in hospital with lung infection for 5 weeks, had fluid drained 3x and ultimately a drain put in (catheter??). I watched him dwindle before my eyes and this plays off in my mind all the time. He was so brave and so dignified in accepting his fate. Onco mentioned possible lymphangitic carcinomatosis but of course, given his condition it was never confirmed. Doesnt matter now anyway because nothing can fill the void.
Thanks for all the advice and info we got here
I am so sorry to hear that this awful disease has taken your beloved husband from you. I completely understand when you describe the void that has been left, but I hope that over time the circumstances of his illness and passing will fade somewhat, leaving you with fond memories of the joyful years you spent together.
Wishing you peaces and comfort,
<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>