Newly diagnosed stage 4 with pleural effusion

[Grower Elaine]

Hello, my name is Elaine. I’m 52. On June 11, I went to the emergency room because I thought I was having a heart attack. I was not having a heart attack. The x ray showed that my IVC filter had broken apart. I also had a pleural effusion. The pleural effusion was drained and biopsied. They found a tumor on my right lung. I was diagnosed with Stage 4 Lung Cancer with Malignant Pleural Effusion. 
My cancer spread to my pleural space, and is inoperable. My PDL 1 is over 90%, so I started Keytruda  and hopefully I’ll respond positively. I have a PleuRX catheter in place. That was a shi_ show, because the tube is resting on nerves, because I’m thin. It’s quite painful. 
I’m disabled because I can’t walk, and now I can’t get around on my crutches, or use my wheelchair. 
I’m pretty much overwhelmed. 
Thanks for listening. Peace and positive vibes to all. 

 

 

[LouT]

Hello Elaine,

Sorry you need to be here, but glad you found our forum.  I'm sorry to here about the discomfort you're going through.  My lung cancer resulted in a lobectomy last year and no chemo was recommended at that time, so I'm not able to provide any information about the type of therapy that you are undergoing, but there are many here who have seen all forms of therapy and I'm soon that they will get in touch with you soon.  

I can only tell you that there are folks here who were diagnosed at Stage 4 and went through many recurrences and are still here to talk about it.  So, please hang in there, never give up hope.  Therapies and procedures are changing at a rapid rate and for many LC can be treated as a chronic condition as opposed to the past.  You don't mention if you live alone or have family with you.  I hope the latter and that you have a support group.  If you didn't before, you do now.  The people here are wonderful and so many can answer any questions you may have from experience.  So please stay positive and take care of yourself as you go through this difficult journey.  

Lou

[BridgetO]

Hi Elaine, I concur with Lou in everything he says in his excellent reply. Like hi, I had a lobectomy and needed no further  treatment so far.. I do hope that folks here who've had more advanced cancers will reply to you. Let us know how we can support you.

Bridget O

[Grower Elaine]

 Thank you LouT and BridgetO. This has just been a whirlwind. June 11, I was me, after that, it’s been me with cancer. It’s not been an easy adjustment.
  I do have my sister, and she is a God send! The kids are grown, and are also amazing. I’m very lucky. My husband can be difficult, but that’s our dynamic, and he’s doing the best he can. I’m the glue that has held the family together, so we are all scrambling.                                           I’m trying to sort through the guilt and fear. I’m more afraid of letting my family down, than I am of the cancer. Guilt, seems to be the strongest emotion, thus far. 
I’m on a Keytruda study, and in a couple of weeks, I’ll be getting a chest ct to see if the tumor is shrinking. If it is, that means I’m responding positively to the Keytruda, and the pleural effusion would go away. Then I can get the chest tube out! That’s in a perfect world, but I live in this world, lol. So I believe my next infusion will be Keytruda and Chemo. Not sure what the name of the chemo is though. 
The Dr will go over all my tumor info next time I see him, so I’ll know more about that, soon. 
Thank you for listening.

[GaryG]

Hi Elaine: Sorry to see you here but you come to the right place. I was diagnosed with inoperable  lung cancer around the same time you were. This coming Thursday will be my second round of triplet  (Keytruda and 2 chemos). Needless to say I was devastated at first but after joining this forum I learned from the very caring and knowledgeable members that cancer is indeed beatable. I encourage you to read all the threads especially those written about chemo and Keytruda. You will find plenty of information to put you at ease. While treatment is not easy, there are plenty of new ways to cure cancer. I wish you the best.

[Grower Elaine]

Thank you all for responding to me. I just feel lost. 

[GaryG]

8 minutes ago, Grower Elaine said:

Thank you all for responding to me. I just feel lost. 

HI Elaine. Like you we were all lost at the beginning. We are here eager and willing to help. Just let us know how.  

[Grower Elaine]

I’m not even sure how anyone can help. But you taking the time to respond, is very kind. I’m just kind of lost. I’ve never smoked cigarettes. I’m 52, and now I’ve got a chest tube. My cancer team wants me to get a porta cath to make it easier to give blood. I’m overwhelmed. And the Keytruda is causing thrush, constant profuse sweating, and of course the occasional bouts of diarrhea. One day life was normal, then I was diagnosed with lung cancer. I’ve lost 20 pounds, and I’m trying to keep it together, but I’m floundering.

[Tom Galli]

Elaine,

Unfortunately, I understand normal to not!

I’ve not had Keyteuda but understand chemo side effects, all too well. What do your doctors say about your weight loss? You mentioned a study, are you still in the study? What were the results of your last scan. 

Stay the course. 

Tom

[LouT]

Elaine,

You are not alone.  While every journey through this disease is different they are have some things in common; life changes, fear enters, doubt about the future, physical and emotional discomfort/pain and a feeling of loneliness.  But, as I said, you are not alone.  You can share here anytime and someone from the group will be here to answer.  Stay strong and hold on...things will get better.

Lou

[Sabacat]

Elaine, 

You are definitely not alone.  It can be a scary and frustrating journey, but there are many folks here who have navigated it successfully, which gives the rest of us hope.   A port may make your life easier - my girlfriend, who survived breast cancer in her 30s and ovarian in her late 50s, refuses to give hers up!   How long have you been on the Keytruda?  If long enough for scans, does it look like you are responding to it? 

Susan 

[GaryG]

Hi Elaine: Let me add my voice to my friends who spoke before me. The past is past and the only thing that matters now is what lies forward and what we can do about it. Fear and concerns are normal  but what's not normal is not to overcome them. You are now in a good place where you can overcome your cancer and we are here to help you. Let's start with the port. I had mine done last week and just yesterday it was used for blood test, CT scan dye and infusion and I was poked only one time only. So having the port is well worth it. As for as loosing weight the doctor can give you medication to help you eat. If you look at my posts in chemotherapy section I named the meds given to me and they helped 100%.  You can also find suggestions on all side effects posted here by other patients from Keytruda to different Chemos. Bottom line it is time to be hopeful and fight cancer because the alternatives are worse. Best of luck.

[Rower Michelle]

Hi Elaine,

I was a 51 never smoker when diagnosed with Stage IV lung cancer and pleural effusion.  My weight dropped like a rock- 15lbs too.  It’s all so overwhelming for me knowing what to expect and what questions to ask. Knowledge is power. 
There are a number of very good YouTube programs about immunotherapy from the Go2Foundation. 
 

The early days are a blur for all of us and it’s important as a never smoker to know if your medical team sent the biopsy out for something called comprehensive  biomarker testing (also called next generation sequencing or molecular testing all means the same thing).  It’s possible to have a high PDL-1 & a biomarker.  
 

You’re doing the right thing, talk to us about anything and we will support you. 
Michelle 

[zara1305]

I am so sorry to hear you are going through all this. Cancer is something that seems to hit us all with no warning. I found this place here and have been given so much support by those with so much knowledge having been through so much. Draw from their strength.   This is not an easy journey but we will make it!

[Judy M2]

Elaine, I can assure you that we have felt the same way you do now. I also went from being healthy one day to very sick. It's a shock, and until your symptoms clear up, it's hard to feel positive or optimistic. 

So, get the port. It makes everything so much easier. Your oncologist can give you meds for thrush and appetite. Please report all symptoms to your chemo nurse. 

Everyone has good advice and it's essential that you get your biomarker testing. 

My adenocarcinoma was also inoperable. I went through chemo and radiation, which caused serious side effects and I almost died in February. But I've come out the other side from those dark times, regained my weight and strength, and my cancer is stable thanks to targeted therapy for my EGFR mutation. Once you start to feel better, your mindset will change. For me, it was a combination of feeling better and this site, learning that there are so many survivors of advanced stage lung cancer. 

Please hang in there with your treatment. You will get through these rough days. I didn't know about this site/community when I was going through my difficulties. But you have us and we're pulling for you.