I am back here after a long break.
Mom was diagnosed with adenocarcinoma of the lungs in September of 2011 at age 77. She was treated for pneumonia for 5 months, had 11 thoracentesis procedures and no one suspected cancer as there were no tumors, no nodules just fluid. The ER doc ordered a biopsy of the fluid that was drained and it was determined she had stage 4 lung cancer.
Mom has been on alimta since then after a short trial with Tarveva. She usually goes almost a year with no symptoms until the cancer reoccurs. It always manifests itself as fluid in the lungs which is suspected to be pneumonia. In November 2015, she was admitted to the hospital for shortness of breath, treated with lasix and sent home. After two more such hospital stays, it was determined her cancer was back. She was put on Alimta and within a week was breathing better and finished her once in 3 weeks x 6 sessions with alimta last April.
Mom started to have breathlessness again three weeks ago and her PCP thought it could be pneumonia. He put her on amoxicillin after a chest x-ray. Her onc said the X-ray showed no sign of cancer (her last CT was in October and was clear). This past week, mom's breathlessness has worsened, after 2 more visits to the PCP, she had to be taken to the ER yesterday. They have been treating her with lasix and have started her on erythromycin and rocephin. They did get a CT this morning. There is not enough fluid "settled at the base" for them to do a tap. The X-ray showed the lungs to be "plump" with fluid (one doc said), another said it shows "condensation." The onc reviewed the CT and doesn't think there is progression to re-start chemo. Mom has been hospitalized, they might let her go home tomorrow depending on how she is but her breathlessness has not improved.
I am writing here to ask if there is any test or any other way to determine that her cancer is back. That is the only way they will put her back on Alimta.
Thanks so much.
Bee
Reply # - January 29, 2017, 06:47 AM
Hi Bee,
Hi Bee,
I'm sorry to hear of your mom's apparent recurrence. At times the pleural fluid collects in small pockets rather than one large collection, making it difficult to drain. If the the pleural fluid can't be biopsied, then perhaps a liquid biopsy could be performed to see if cancer cells appear. It's not quite as accurate as a tissue biopsy, but when tissue is not available it's a reasonable option.
JimC
Forum moderator
Reply # - January 29, 2017, 07:10 AM
Hi Jim,
Hi Jim,
Thank you so much for the response.
Mom was diagnosed by a liquid biopsy the very first time 5 plus years ago :( I asked for that yesterday and the doc said it would be too difficult to do as there is no settling of the liquid just condensation. I googled condensation of the lung and my layman' s understanding is that it is "wet", the other doc used the word "plump" so I am assuming he meant the lung is heavy or swollen with fluid but they have no way of getting a liquid sample?
I got a copy of the CT results after I wrote the question here and the CT report says there are new findings - effusion in the upper and lower right lobe as well as in the minor fissure. I remember asking the onc two weeks ago if they could do a liquid biopsy (before the CT) and the doc indicated since mom's right lung is already partially collapsed (acletasis?), she didn't want to risk it.
I am worried as they have mom on two strong antibiotics, erthyromycin and rocephin for the pneumonia they are treating. The internist told me he is not sure it is pneumonia but absent all other causes, they are treating for it. I am at my wit's end as I know (silly as that may sound) that it is the cancer that is back.
Thanks so much and if you can think of any other way of determining that this is cancer, please let me know so I can ask the docs about it.
Regards,
Bee
Reply # - January 29, 2017, 10:07 AM
Hi Bee,
Hi Bee,
I'm sorry I didn't make my response clearer. When I mentioned a liquid biopsy I was referring not to the testing of drained pleural fluid, but rather to the relatively new process of testing a blood sample for evidence of cancer cells. You can view a podcast/read a transcript discussing this procedure here: http://cancergrace.org/lung/2016/01/20/gcvl_lu_blood-based_mutation_tes…
JimC
Forum moderator
Reply # - January 29, 2017, 12:25 PM
Thanks so much, Jim. I
Thanks so much, Jim. I watched the video and asked the attending if those blood tests could be performed. He said he had not heard of either of them and would have to defer to the oncologist. I paged the onc but unfortunately she is not available to the phone. I am wondering if an MRI would help? Or can an outside lab do the test? Will check around on the latter.
Thanks so much again.
Bee
Reply # - January 29, 2017, 02:19 PM
Hi Bee,
Hi Bee,
I'm sorry your mom is having such a difficult time. I only have a couple of thoughts that I'd address with the onc if it I were in your shoes. As Jim said a liquid/blood biopsy can be done and may need to be independently of the hospital's lab. It's not a standard of practice because it's not yet proven to be superior to tissue biopsy so may not be available where she is. NSCLC usually has a related tumor but it's not always the case. Sometimes there's cancer and symptoms without a primary tumor. I wonder with your mom's history of not having a primary but having malignant PE with symptoms where alimta was effective if that would be reason enough to use alimta now. This time without confirmation since the fluid can't be drained.
If she doesn't respond to antibiotics, which usually happens pretty quickly, then her onc may well be able to make have an exception made. The onc may have good reason to believe it's not cancer though. But you're right to be suspicious. Elderly adults often have quite indolent cancers that may be metastatic (which is what malignant PE is now classified as) and treatable long term. It sounds as though your mom might fit into this unusual set of circumstances. I hope you get this sorted out. Keep us posted.
All best,
Janine
Reply # - February 18, 2017, 03:29 PM
Hi Janine,
Hi Janine,
Sorry for the late reply. I asked for an echo to make sure it was CHF as they insisted it was and to please do a thoracentesis to make sure it was not cancer. Mom had a thoracentesis and the biopsy of the fluid showed cancer. She also had an echocardiogram done last Thursday which was "normal for her age" according to the cardiologist. The only fluid visible on the echo was in the pleura. So my suspicion was right as her heart fails due to fluid overload everytime the cancer is back. Mom had her Alimta 2 weeks ago and is scheduled for another infusion this Wednesday. Her breathing has improved but usually with the Alimta she is remarkably better even after one session, not so this time so that is worrisome :( Keeping my fingers crossed, it works again.
So glad to see your husband has remained NED. Met a friend yesterday whose mother remained NED for 7 1/2 years after being initially treated for a Stage 4 diagnosis. That gave hope.
Thank you for writing.
Take care!
Bee
Reply # - February 18, 2017, 03:40 PM
Janine,
Janine,
Quick question, can you direct me to any reading on the indolent cancers in the elderly especially malignant pleural effusion?
Thanks so much!
Bee
Reply # - February 18, 2017, 07:04 PM
Hi Bee,
Hi Bee,
There are a few lucky ones who remain NED and I'm happy to provide a proof and hope. :) I hope your mom responds to alimta.
http://cancergrace.org/lung/2011/10/03/lilenbaum-on-lc-in-elderly/
this is a results page from a search, http://cancergrace.org/search-results?q=frail%20and%20elderly
There are links to a series of short videos on pleural effusions below the post. http://cancergrace.org/lung/2007/03/17/intro-to-pleural-effusions/
This link specifies BAC type adeno but it pertains to any indolent stage IV cancer (BAC is just a subtype that most often takes on a very indolent growth pattern). http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/
Here's to good hopes and outcomes. Keep us posted.
All best,
Janine
Reply # - February 18, 2017, 07:16 PM
Knock on wood!
Knock on wood!
Thanks so much, Janine. I now have reading material for the weekend, all set :)
I have been googling and came across Dr.West's presentation, will read and watch the rest. Thank you for taking the trouble to find these articles and videos.
Have a wonderful rest of the weekend!
Bee
Reply # - February 19, 2017, 04:28 AM
She's been through alot and I
She's been through alot and I hope they find out what's going on soon. It sounds like she's not in the US.
Did they ever test for mutations since she has adeno? Has her cancer been found anywhere else other than the pleura, meaning does she have any tumors anywhere? I'm surprised from reading your post that a
pleurodesis hadn't ever been recommended. This would've sealed up the lining of the lung to prevent further fluid build-up. Not sure if it's a possibility now but worth asking her onc about. Let us know how she's doing!
Take care, Judy
Reply # - February 19, 2017, 09:07 AM
Hi Judy, good to hear from
Hi Judy, good to hear from you! and your excellent suggestions.
Reply # - February 19, 2017, 06:03 PM
Thank you Janine. I stop in
Thank you Janine. I stop in every day and read posts and as you see, sometimes respond. I'm doing well and everything worked out so far. Take care, Judy
Reply # - February 19, 2017, 06:04 PM
Hi Judy!
Hi Judy!
How are you? Glad to hear from you! And happy to see you are doing well :)
We are in the U.S., and pleurodesis was never suggested as the initial diagnosis was persistent pneumonia and mom was referred to an infectious disease specialist. By the time the cancer diagnosis was made, the tarceva even though it did not do much for the cancer did completely take care of the effusion. She was tested for mutations, has none.
The second time the malignant pleural effusion occurred after the initial onset in April/May of 2011 (the cancer diagnosis came in September 2011) was January 2016 when mom was on an Alimta break. The same thing happened then, ER thought she was having pneumonia and heart failure, her onc was on vacation, and after almost a week in the hospital, Alimta was re-started on an out-patient basis and she recovered right away. This time though, she still has pressure on exertion and when she lays flat. Hope the second infusion of Alimta will take care of that.
And no, the docs have never tried to check if mom's cancer is anywhere else. She has never had a PET scan, onc told us that a PET scan was pretty useless as the diagnosis was Stage IV and there could not be a cure hence the goal was to keep mom symptom free and give her the maximum time possible. The CT does look at her liver and spleen every single time she has a scan and the scans have always come out clear except for the lungs. When the fluid abates, there are nodules visible in the lungs that get bigger and smaller each time but no tumor as such according to the onc. She has a lymph node that is enlarged but that too shrinks in size every time she is NED.
If the effusion does not resolve, I will definitely bring up pluerodesis with the onc. The onc was not in favor of pleurodesis initially in 2011, the doc felt then that the risk outweighed the benefit.
Thank you so much again for your suggestions. This forum is a heaven sent.
Have a lovely rest of the weekend!
Bee
Reply # - February 19, 2017, 06:10 PM
You say she has no mutations
You say she has no mutations but was on Tarceva and it helped the effusion, how strange though it's been shown to work for EGFR negative patients, just not very long. I've never heard of not ever doing a PET scan, did she have a brain MRI? I would definitely think of getting a second opinion at a research hospital treating cancer patients. The pleurodesis could've been done the second time she had the effusion to hopefully keep it from coming back again. Hope all goes well for her. Take care, Judy
Reply # - February 19, 2017, 11:38 PM
Hi Judy,
Hi Judy,
No, mom has never had a brain MRI either. Mom had a consult at a research hospital before starting on Alimta. The doc there advised that she be put on on a combo (carboplatin with Alimta) but mom's onc felt because of her age, she would not be able to tolerate the combo. The Tarceva she was put on even before being tested for the EGFR mutation.
What do a brain MRI and PET scan do in terms of treatment options? Mom has gone NED with Alimta every time, so we have been playing ostrich and not pursuing other options in the hopes that Alimta will keep working as she tolerates it very well. But this last stay in the hospital and the doc's insistence on no chemo, did scare us. The no tap was also a little disconcerting though when the tap was eventually done and the fluid was blood red, the decision to do chemo was made right away.
Thank you again so much for the insight.
Bee
Reply # - February 20, 2017, 07:40 AM
Having those two scans will
Having those two scans will get you to a complete diagnosis. Though having an effusion automatically makes you stage IV, knowing the cancer load before starting tx is preferable by most onc I know. Does she have other health issues adding to treatment decisions? Age should not be the only factor. I'd definitely get another opinion. The good news is that alimta continues to work when she needs it.
Take care, Judy
Reply # - February 21, 2017, 03:51 PM
Hi Judy, I tried to see if I
Hi Judy, I tried to see if I could send you a private message but not sure how to do it so am writing here again. Does one see the onc everytime before a chemo session? Mom used to but I was told she didn't need to see the onc before her session tomorrow, she didn't last time either but she had just seen the onc a few days before at the hospital. As mom is having breathing difficulties still and I have a couple of other questions, I would like her to see the onc tomorrow but not sure if that is standard procedure.
Thanks for any feedback, deeply appreciate it.
Bee
Reply # - February 21, 2017, 06:38 PM
Hi Bee,
Hi Bee,
In my experience, we didn't see my wife's oncologist at the time of each chemo infusion, but every other infusion. On the other hand, if you have questions you need to ask your oncologist, you should contact his or her staff prior to the infusion, and perhaps either the oncologist or a member of his/her staff will drop in before or during the infusion to discuss your questions.
JimC
Forum moderator