My husband has mild ascites and right pleural effusion. These problems started when he was given 900 mg Alimta maintenance dose whereas he had only been having 750 mg for nine months. Due to deteriorating condition he had a pet ct scan which showed progression. So the alimta was discarded and Tarceva 150 mg started in September. He responded very well to the Tarceva and pet ct scan in November showed miliary nodules disappeared but progression on some bones and mediastinal nodes and persistent mild ascites and pleural effusion.
Our onc suggested biopsying the mediastinal lymph nodes and I remember Dr. West wondering why my husband should be put through this unnecessary pain. We however went ahead and did the mediastinal biopsy wich did not yield any results as the nodes which lit up on the scan were not found. This doctor carried out the procedure without referring to the pet scans at all. After the procedure he was very weakened.
He now has persistent stomach problems which may be due to the mild ascites combined with Tarceva. He is unable to eat due to a feeling of fullness and is consequently losing weight.
His pleural fluid was tapped and sent for mutation testing. This testing came back with a report of negative for EGFR and Alk.
When we met the onc with the test reports and complaints of stomach fullness, pain and inability to eat along with some breathlessness, the onc decided to change him to Gemcitabne Carboplatin palliative chemo. I asked whether a pet scan or ct can would first be ordered but he said tht would be unnecessary as the management would remain the same.
My questions are:
1. Can mutation testing from pleural fluid be relied upon ?
2. Just because he as some breathing problems and the pleural fluid is accumulating again and again does this mean Tarceva is not working?
3. What are the chances of Gemzar and Carboplatin combine working in this scenario?
Thank you once again for your interest.
Apra
Reply # - March 18, 2013, 10:27 AM
Reply To: Fourth line now
Hi Apra,
Pleural fluid can certainly be used to detect particular mutations; my wife's EGFR mutation was discovered that way. In your husband's context "relied upon" is a little trickier. Just because no cancer cells were found to have an EGFR mutation or ALK rearrangement, that doesn't rule out the possibility that cancer cells elsewhere in his body might have one of those mutations.
Even the question of whether Tarceva is "working" is not a simple one. It is possible that Tarceva was effective against some of his cancer cells but not others. If his latest PET/CT showed progression, Tarceva does not appear to have been controlling at least some of his cancer. As Dr. West has said:
"First, a significant minority of the time, people will show different results depending on whether one area of a cancer is biopsied or another, and it appears that people with multiple pulmonary nodules are even more likely to have molecular heterogeneity from one nodule to the next. This provides a ready explanation of how treatment can lead to shrinkage in some lesions as others remain stable or grow, and/or new lesions appear. Why is the response rate to EGFR TKIs in patients with an EGFR mutation 60 or 70% and not 100%? Perhaps because many of the 30-40% who don’t respond have growing lesions taht don’t have an EGFR mutation, or the sample that showed a mutation was a minority of the overall cancer that doesn’t truly represent most of the cancer’s biology." - http://cancergrace.org/lung/2012/08/02/heterogeneity-and-mixed-response/
When you're on your third line of treatment, the decision to move on to a different regimen is often based on the rate of progression. That's something that your husband's oncologist would need to assess, and it seems that perhaps he has concluded that the progression on the November scan, combined with worsening symptoms, warrants a change in treatment. Whether fourth line treatment will be effective is impossible to predict.
JimC
Forum moderator
Reply # - March 18, 2013, 11:12 AM
Reply To: Fourth line now
Thank you Jim. Yes I know 'relied upon' is a strong word. He is a never smoker with Adenocarcinoma of the lungs so we had hoped he would either be EGFR or Alk positive.
Our onc is no hat thorough a person. In India we do not have oncology nurses that are allowed to give any advice.
I just feel that a change of treatment without scans is so tardy. He says scans are only for academic purposes. He even forgets the treatment regimens we were on. They do not have a system where a patients information shows up on a computer screen. If we lose the paper that he wrote on, there's no way for them to find out what treatment we were on. This is happening in one of the most expensive hospitals in India.
Thanks for your input.
I also would like to know whether Gemzar has a fluid retention habit. My husband's ascites and pleural effusions are creating too much water in his body.
Apra
Reply # - March 18, 2013, 01:11 PM
Reply To: Fourth line now
Hi Apra, I so hate to hear your husband is having so many difficulties. I wanted to mention the topic of platinum hypersensitivity. It will happen when someone is given platinum based treatments over 4 or 6 cycles. I know your husband has already had 9 or so. It's a very common discussion on Grace. Here is one. http://cancergrace.org/lung/topic/carboplatin-hypersensitivity-reaction/
I hope you can get an ALK testing. I know you have been trying.
I will ask Dr. Walko to comment on treatments that aren't normally worrisome for water retention.
My husband didn't have a problem with that when he was on Gemzer.
All best,
Janine
Reply # - March 18, 2013, 01:35 PM
Reply To: Fourth line now
Apra,
Gemcitabine (Gemzar) has definitely been associated with edema (13%-20% for general and peripheral edema). Most of these were mild and patients rarely had to d/c therapy based on the edema though. Edema is a side effect for many cancer agents including docetaxel (Taxotere), less with paclitaxel and vinorelbine.
Best wishes,
Dr. Walko
Reply # - March 18, 2013, 01:45 PM
Reply To: Fourth line now
Hi Apra:
Thank you for checking in. . .and I'm sorry to read of all the issues your husband has had to deal with recently. This is totally off-point here, but just out of curiosity, does your husbad's pathology report for the fluid they took out and tested mention that the fluid was of a certain color or milky in appearence, etc. . .The reason I ask is because while my Mom was on Alimta, the fluid that was drained was a milky pinkish color (you couldn't see through it), which pathology could not explain and it was NOT infection, etc. But, once Alimta was stopped, the fluid turned into a see-through pinkish color (which is a color they expected it to be). I always have wondered if the Alimta somehow was causing accumulation of that non-clear fluid in my Mom's right lung cavity since she did not have any fluid in that cavity prior to going on Alimta.
Anyway, just curious. . .
Wishing you both all the luck in the world and hoping your husband starts feeling better soon,
Laya
P.S. And, just to be clear, they never found any cancer cells in my mom's effusion.
Reply # - March 18, 2013, 09:23 PM
Reply To: Fourth line now
Janine,
Thanks for your reply. Alk testing was also done from the same pleural fluid given in a small bottle. I believe Pfizer is now doing the testing free but they do not accept pleural fluid but this hospital does the testing on pleural fluid and it came back negative. Thank you for that word about platinum. I will read the link.
Dr. Walko, what is your opinion on moing to a new therapy without having any scans to assess the situation. My hudband's lat scan was in November 2012 but our onc insists no scan. In about a few weeks back he saw the scan of November which was taken after two months on Tarceva and he was so happy and wanted us to continue on Tarceva upto May after which only we would have a scan. Then when my husband went to him with his stomach complaints like fullness and inability to eat he suddenly said we would change therapy. He assured my husband that this new injectable chemo would dry up the ascites immediately and my husband is hanging on that word and becoming unhappy with Tarceva.
I believe a more careful assessment should be made before such a major decision is taken. We are now going for an ultrasound of the ascites to see the amount as compared to ultra sound of Feb 26th 2013.
His problems of tiredness and inability to eat along with stomach pain and other aches and pains may be due to Tarceva also isn't it?
Laya, I am so happy to hear from you. I am very sorry about your mother. I came to know only now as I had nt been on the board for sometime, but so glad that you are still Irving your valuable input.
The colour of the pleural fluid was yellowish with red tinges. They called it hemorrhagic fluid colour. Yes, I believe alimta exacerbated his fluid.
Apra
Reply # - March 18, 2013, 09:43 PM
Reply To: Fourth line now
Apra,
I'm sorry to hear about your husband's recent difficulties.
The most standard approach is to definitely repeat scans before switching treatments, both to assess/confirm progression but also to establish a new benchmark before starting the next therapy. Because we use repeat scans to judge whether a treatment is effective or not, we need to know where we are when we start a new treatment in order to determine whether there has been improvement, stability, or worsening when we compare the baseline to the next scan on a treatment.
If there are cancer cells in the pleural fluid, mutation testing can be done on this, and it is typically reliable and successful. Obviously, if there are no cancer cells in the fluid, you can't detect mutations from the pleural fluid.
It's hard to give any meaningful numbers about the probability of any chemotherapy working in the fourth line setting, since there is essentially no research with results to guide us. Relatively few people with advanced NSCLC are candidates for fourth line treatment, and there has been close to no research on this subgroup. In general, the results tend to become worse with subsequent lines of treatment, and the benefits of chemotherapy aren't demonstrated after the second line setting.
Good luck.
-Dr. West
Reply # - March 19, 2013, 05:42 AM
Reply To: Fourth line now
Apra,
I was going to defer to Dr. West on your question anyway so I'm glad that he jumped in.
I'm sorry for the challenges you are facing, I'm sure it is very frustrating.
Hope things turn around soon,
Dr. Walko
Reply # - March 19, 2013, 06:56 AM
Reply To: Fourth line now
Thank you Dr. West and Dr. Walko,
Just because he has mild ascites and cannot eat because of this feeling of fullness in the stomach and he has aches and pains here and there should we change therapy?
The onc says we can get a pet ct scan at our own wish.
So frustrated at this turn of events. The more desperate we become, the less help we are getting. :/
Thank you for being there. Your replies have comforted us. We will wade into the unknown world of fourth line after a pets can. In the meantime he is taking Tramadol, it is an opioid. I hope it is okay to take it twice a day.
Apra
Reply # - March 19, 2013, 07:03 AM
Reply To: Fourth line now
Apra,
Tramadol is a drug I consider to have opioid and non-opioid properties. It does work in some of the same ways that opioids work but also works in other ways.
Usually the drug is started at 50 mg up to every 6 hours (4 times per day) for the immediate release form. The extended release (designated as ER or XR on the pill bottle) is for once daily use only. If you are using the immediate release form, twice daily is reasonable, though I would defer to your physician for official recommendations.
Best wishes,
Dr. Walko
Reply # - March 19, 2013, 09:31 AM
Reply To: Fourth line now
Dr. Walko,
Thank you for your kind input. The Tramadol we are having is a green colour capsule 50 mg. it was written TDS for five days but we have been taking it intermittently as it seems to control the pain best. So afraid of these pain killers but so grateful for them also. He was prescribed this tablet when he was discharged from hospital following mediastinoscopy.
Apra
Reply # - March 19, 2013, 11:45 AM
Reply To: Fourth line now
Hi Apra. I'm just a patient, but I wanted to jump in and say that I take tramadol daily and it works very well for me, but I do also take a stool softener, as it can cause constipation. With all of his other concerns, you don't want to add that, believe me!
Debra
Reply # - March 19, 2013, 03:22 PM
Reply To: Fourth line now
Thank you for your kind words, Apra...
And, very interesting about the yellowish fluid that was blood-tinged (exactly the color of my Mom's fluid while she was on Alimta). The color changed after Alimta was discontinued (to a clear blood-tinged fluid). My mom had a very hard time with Alimta (in terms of fatigue and appetite). I believe my Mom's docs referred to the clear blood-tinged fluid as "serosanguinous fluid." I often have wondered if the accumulation of this yellowish/pinkish milky fluid in her right lung cavity had anything to do with Alimta - - like the Alimta was not totally leaving her body and just sitting there causing cumulative side-effects. Of course, this is a non-medical non-scientific guess on my part. . .
Anyway, continued best of luck to you and your husband. . .and looking forward to some continued (hopefully positive) updates from you...
All My Best,
Laya
Reply # - March 19, 2013, 04:28 PM
Reply To: Fourth line now
Apra,
Your question about whether to change treatments is really asking us to give medical recommendations that are illegal for us to provide. I'm sorry to say that this is where it's necessary to work with doctors who have a direct role in your husband's care. Unfortunately, it's just not possible for us to get into making medical recommendations for people who aren't our patients.
Good luck.
-Dr. West
Reply # - March 20, 2013, 05:17 AM
Reply To: Fourth line now
Dear Apra,
I am not a doctor, so please take my words with utmost caution. But did anyone check your husband for the evidence of a gastric cancer?
This feeling of being full after having eaten only few spoons can be associated with gastric cancer too and my mother's oncologist has told us that it is not uncommon that lung cancer patients develop or have gastric cancer in parallel.
This is probably not your husband's case, but I know this feeling of helplessness and therefore, maybe this is something worth looking into before starting a new treatment.
Best hopes,
Meli
Reply # - March 20, 2013, 12:04 PM
Reply To: Fourth line now
Debra, thanks for piping in with that word about Tramadol. It works fo my husband too. Today the onc said it is alright to take upto three times a da the 50mg immediate release one. I'm glad there are others here who take this med.
Dr. West,
I am so sorry. I did not know that I was asking about changing treatment regiments. I just went through my previous posts carefully and i think you might be referring to the post of 18th March where i had asked Dr. Walko's opinion about moving on to a new regimen of treatment without first having a scan. I was not asking her whether my husband should move on to a new treatment, I am sorry. My query regarding scanlessly shifting to a new treatment was already answered very satisfactorily in general by you. So I have no more queries on this point. Thank you.
Laya, I am always encouraged by your letters. I hope I will be able to share better news next time.
Meli60, thank you for your concern. I am sure you did not mean to scare me but I am scared now with a new fear. I will look into this though in this case i think knowing will not help me much. Anyway I leave everything to God, may His perfect will be done. I am happy your mother is doing well. May the good days continue.
Thankful for this community.
Apra
Reply # - March 20, 2013, 10:54 PM
Reply To: Fourth line now
Dr. West,
I am so sorry. Just saw my post of March 19th. Yes, I did ask that taboo question directly. Thank you for reminding me.
Today he is having a whole body pet scan. Will update you about the report.
Apra
Reply # - March 22, 2013, 08:09 AM
Reply To: Fourth line now
Dear Apra,
I am so sorry if my post has scared you, it was definately not meant to!!! I just wanted to share our experience, I am sorry if it came across in a bad way - not being native in English makes it sometimes difficult for me to express the thoughts in the right manner. My mom is going actually through rough times herself (liver lesions have significantly progressed, while the main tumor seems stable), and she will have a liver biopsy done soon. Among others because the oncologists said that "we have to see what that is, could be another cancer too from somewhere else, e.g. gastric - not so uncommon". I just wanted to share this information, because I heard it for the first time there.
I am really sorry again - I am for sure no doctor, so I am sure your husband will be fine! Please forgive me and don't give up - have hope!
Warm regards,
Meli
Reply # - March 22, 2013, 09:16 AM
Reply To: Fourth line now
Meli80,
Please don't be sorry. That was a legitimate concern. But so far the ultrasounds and pet scan do not point to n lesions in he stomach area so I hop we are good for now.
I am so sorry about your mother. This is a bad journey. The doctors at Grace give us the strength to continue because they take all our silly question seriously. The things that our Onc's don't tell us or ont want to be bothered wih are clarifiedby the Cancergrace doctors.
I hope and pray your mom will find relief and respond to h chemos hat are bing iven and ht her doctor will continue to b equally concerned for her well bing as you are.
Apra