You are here

"Invisible" tumor causing pleural effusion

LMighty
Posts: 14
Joined: Feb 2017

Hi everyone,

I am new to this forum. I am the caregiver to my dear 64 year old mom who has stage IV colorectal cancer. In July 2016 she suffered pleural effusion. Adenocarcinoma cells were found in the fluid but there was no visible tumor in her lungs even under PET scan.

She then underwent pleurodesis and then 6 rounds of Xelox + Avastin, was officially NED for around a month until today when the malignant pleural effusion came back. Still there was no visible tumor in the lungs at all. Our onc will be switching to Irinotecan + Avastin due to toxicity from Oxaliplatin previously.

I have heard that Irinotecan has much more adverse side effects than Oxaliplatin so I am really worried. What particularly frustrated me was that there were no visually detectable tumor in the lungs but the fluid keeps coming back.

I would really like to hear some advice or stories of suvivors with similar symptoms. Sometimes it feels like we are battling pleural effusion instead of cancer itself, but we are aware they are caused by cancer and cannot be ignored. I am constantly worrying that the "invisible" tumor will materialize suddenly. I start to think my mom may be closer to getting cured if there is a visible tumor and we can just get rid of it by resection. Cry

Any advice will be highly appreciated.

Trubrit's picture
Trubrit
Posts: 5192
Joined: Jan 2013

I am sorry to hear of your mum's diagnosis. It all sounds so terrible.  

There are several folks here on Irinotecan who can share their advice about it. I myself was on the FOLFOX, so cannot help. 

The forum is running a little slow, so stick with us. 

TRU

 

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

One of my first symptoms was a distended stomach that was actually fluid build-up.  The fluid eventually got through the diagphram and I had water around my lungs (Pleural effusion).  Luckily I had no cancer cells in the fluid.  My surgeon said that fluid buidl-up happens with peritoneal mets, similar to what happens with ovarian cancer.  Your mom may not have an invisible tumor but tumors in her peritoneum.  Has she had surgery? Does she have excess fluid in her abdomen? Has she had a recent CT Scan or PET Scan? Sometimes peritoneal mets can be small. When I was originally diagnosed I had mets to the omentum and ovaries in addition to the primary tumor in my colon.  Sorry to hear she's having such problems.  Traci

LMighty
Posts: 14
Joined: Feb 2017

We met the onc today to decide our next steps.

Unfortunately in terms of curability (if any), he said my mom's condition is less favorable than visible tumor because there is no localized resectable target. Still, we have the solution that is redoing pleurodesis, which will prevent pleural fluid from accumulating IF done perfectly. He also mentioned that a perfect pleurodesis would have sort of "preventive" benefit, as it eliminates space for malignant fluid accumulation which may lead to tumor development. It certainly does not mean that the disease won't progress in other ways, but we will take it if it at least means permanent or long-term elimination of pleural effusion.

The pleurodesis will be done in weeks once X-ray shows "sufficient" accumulation of fluid -- after the fluid is drained of course. We will then take a 2-month break starting today before she undergoes the coming rounds of Irinotecan + Avastin + Xeloda. Finger crossed the cancer does not progress during the break and the new drug works better than Oxaliplatin.  I try to be optimistic. It is really tough enjoying only one month of NED and having to watch her going through the ordeal again :(

@Traci, my mom's PET scan from early January was 99% clear, the 1% being "inactive pleural fluid" in her left lung, according to the report. If there were mets in other places, they are probably undetectable even with PET scan. The onc said today that the fluid was most likely an early sign of my mom's current condition, and indicated that the cancer does not fully respond to Oxaliplatin.  We had to stop using Oxaliplatin anyway due to the toxicity.

Thank you again for your kind words. I really appreciate that you took the time to read and respond.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I hope your Mom has a nice break from the chemo and removing the fluid does the trick.  Traci

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Lmighty, I received irinotecan in my chemotherapy. I know I recall the oxciliplatin the most as I still have neuropathy left over from that drug. I recall that nausea and diarreha were other symptoms but I don't know if that was from the irinotecan specifically or if it was from the other drugs in the cocktail. 

My opinion is that these drugs work in many cases and don't work as well in some cases. Unfortunately the doctors don't know why they work in one case and not in another. They are awaiting the invention of the Star Trek doctor's diagnostic thing-a-ma-jig. :-)

So our only option is to experiment and see if the drug will work or not. 

In my case we found one drug that had an amazing impact on the cancer. Erbitux. I'm not proposing that this drug would work in your mother's case. I am proposing that searching and trying different chemo might find a highly effective drug.

Praying for you and your mother as you battle together. She is truly blessed to have you at her side in this fight. Love and Light to you.

LMighty
Posts: 14
Joined: Feb 2017

Hi Phil, thanks a lot for your kind words. During the 6 months time my mom was on Oxaliplatin, the plerual effusion never came back, so it should be at least partially working. Sadly the fluid reaccumulated after only one month off from chemo. Our onc considered the cancer progressed although the symptoms did not necessarily worsen.

My mom is KRAS mutant so Erbitux is not an option. Still, thanks for the thought.

Canadian Sandy's picture
Canadian Sandy
Posts: 629
Joined: Jul 2016

I don't want to scare you butt I spent 3 weeks in the hospital last August from 1 treatment of irinotecan..... diarrhea that they could not get rid of. Had iv for a week and a half. I am 75 years of age and I think the treatment was just to strong for me. BUTT the results were good.....at the moment I am cancer free. I also took xeloda and avastin. this is only my version and your mom may do well on it.

LMighty
Posts: 14
Joined: Feb 2017

Hi Sandy, thanks for your reply. I am sorry for what you have been through but also happy for you being NED now. I do understand that each individual can tolerate the same drug very differently, but of course tolerance does not mean bad response.

My mom was hospitalized due to all the fatigue and nausea caused by radiotherapy before. She did not spend any time in hospital though when she was on the notorious Oxaliplatin. I guess Irinotecan just has more "visible" side effects like hair loss and diarrhea. My mom had colostomy so it could be a bit easier for her to deal with the diarrhea.

LMighty
Posts: 14
Joined: Feb 2017

Hello friends,

i would like to give you an update on my mom:

- Pleurodesis for the left lung failed the second time. There was a faint shadowy area in left lung on X-ray. Our onc was quite certain it was tumour. First time it became visible so progression is implied. So no more chemo break now. We started chemo and wait for the fluid to naturally drain, assuming the chemo is working.

- Latest test result shows that my mom is KRAS wild type so the onc replaced Avastin with Erbitux. Xeloda is deemed ineffective so it was dropped. My mom started her first cycle of Irinotecan plus Erbitux a week ago. Tolerating it really well. No diarhhea at all with very manageable nausea, and some rash from Erbitux. 

- I would like a CT for accessing the exact size and location of the tumour but our onc advised against it. He said X-ray should be enough to access the effectiveness of chemo for now. I am a bit confused but maybe it's best to save it for after a few more chemo cycles.

-  I asked our onc a few times whether surgical resection of the tumor in pleural cavity (not on the lung itself) is possible. He said no, which is different from my research findings. So I am considering having second opinion at some point to seek possible treatment other than chemo. Other than surgery, maybe radiation? I am aware it would not be curative but hoping it at least resolve the recurrent effusion. My mom is having a hoarse voice caused by the effusion and it's sometimes depressing, constantly reminding her of the cancer.

I have been following the recent posts and I know that some among us have experienced setbacks. I believe we can beat this dreadful disease together. Stay strong.

Trubrit's picture
Trubrit
Posts: 5192
Joined: Jan 2013

I can't say I've heard of anyone being followed with an Xray. Most of us have CT scans and PET scans. Have you thought about getting a second opinoin?  Thats the route I would take. 

TRU

LMighty
Posts: 14
Joined: Feb 2017

Hi Trubrit,

That's what I thought too. I will bring up the topic again next time we meet the onc.

My mom's last PET scan was done in January. Next one would be around July as our onc recommended doing a PET scan every 6 months.

LMighty
Posts: 14
Joined: Feb 2017

Btw that was how he followed my mom's progress before -- X-ray after each Xelox injections, when the tumour could not be detected by scans, even PET scans. Purpose was to see if fluid reaccumulates.

Trubrit's picture
Trubrit
Posts: 5192
Joined: Jan 2013

A PET scan in January is good. You don't want too many of those.  Still, I'm not sure why not a CT scan; even though too many of those isn't good for a body. 

I wish your mum all the best and hope she joins those of us who are NED. 

TRU

LMighty
Posts: 14
Joined: Feb 2017

Thank you Trubrit. I decided to contact the surgeon who was in charge of the resection after my mom's stage I diagnosis five years ago. For now I would like a surgeon's point of view instead of another oncologist. I hope it will be the start of our counter attack!

LMighty
Posts: 14
Joined: Feb 2017

Thank you Trubrit. I decided to contact the surgeon who was in charge of the resection after my mom's stage I diagnosis five years ago. For now I would like a surgeon's point of view instead of another oncologist. I hope it will be the start of our counter attack!

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Second opinions are usually  good idea.  sorry to hear your mom is still having problems.  Good luck with the surgeon.  Traci

LMighty
Posts: 14
Joined: Feb 2017

Thank you Traci. Good luck to you as well.

Update: The surgeon told me surgery is not impossible but whether to perform one depends on many factors. Pleural effusion implies that the cancer cells are "all over the place" so it may not be "worth it" to resect even small nodules considering the risk, unless there is definite benefit, like debulking significant tumour mass. It is best to stick to the current attack plan that is finishing a few more rounds of chemo and see what appears on the PET scan afterwards. 

Regarding CT scan, he said yes we can do one but CT scan does not tell whether a mass is malignant. X-ray should be enough for now to tell if the chemo is working. So it seems a CT scan would not change the current plan anyway.

Shortly I may also see another surgeon who was also involved before to get one more opinion. At least for now I am a bit relieved that there still exists options other than chemo. 

Subscribe to Comments for ""Invisible" tumor causing pleural effusion"