Update on my sister's diagnosis of Stage IV NSC adenocarcinoma with pleural effusion

[2020CURE]

Good morning all,

My 85 year old sister had a video assisted thorascoscopy on March 7th after having a malignant pleural effusion drained once before. An extensive tumor at the base of the left pleural space was discovered with bleeding into her diaphragm - they removed the spleen, repaired her diaphragm and sent tissue samples once again to pathology for molecular analysis (the first time around they weren't able to collect enough samples). Her left lung was greatly reduced in size due to the pleural effusion compressing it.

Today is the 19th of March and we still have no results on the molecular analysis for hopefully identifying a targeted therapy. Can't believe it is taking so long. She is now in a wheel chair at home with 24 hour care. She is very scared, has lost her appetite and feels nauseous all the time and just doesn't feel good. We don't want her to give up. She cannot start any treatment until the results of the genetic test to identify possible markers. Is it normal for it to take such a long time for these results?

Any feedback will be greatly appreciated!

God bless!

[FtB_Peggy]

Good morning, I am so sorry to hear all that your sister has been through. Please make sure her doctors know how she is feeling so they can help. The analysis can take anywhere from days to 3 weeks, depending on various factors, but when you call about her symptoms you could ask them when you can expect to hear. Holding you both in my thoughts.

[2020CURE in reply to FtB_Peggy]

Thank you so much Peggy!

[JeanE41]

Good morning Mitchell 740. Yes, the testing for genetic markers can take this long. It took between 2 and 3 weeks to hear back on mine. I think being the caregiver is harder than being the patient. I hope you get news soon and a treatment plan is started. Hang in there and take care of yourself.

Jean

[2020CURE in reply to JeanE41]

Thank you Jean for your reply! You’re right, the caregiver’s waiting can be very tough.

[Yogamama72]

My prayers are with you, hopefully you get some answers very soon. Take care of yourself during this process too.

[2020CURE in reply to Yogamama72]

Thank you so much!

[Denzie Moderator Volunteer]

While you are waiting for the results your sister may benefit from a prescription for Marinol or Megace. They will help with the nausea and increase her appetite. She’s going to need every ounce of weight she has to help cope with chemo.

Another possibility is if you live in a state that allows medical marijuana. There are tinctures you can add to what she will eat. Edibles are slower to work their way into her system but my understanding is they work very well.

This is not a time to focus on a healthy diet either. If she’ll eat ice cream let her have it 3times a day.

[2020CURE in reply to Denzie]

Thank you Denzie. I totally agree with you and we’re trying to make her eat. I know she’s on a nausea medication so another med for appetite is a great idea. We’ve already been told that she’s not a candidate for chemo since during her VATS surgery they ended up removing her damaged spleen and tried to fix her diaphragm which was all compressed from the pleural effusion. She’s 85, 20 years older than me and like a second mom. My niece, her daughter, has basically moved down here with us to help with her care - so we’ve all become a team. My sister has been very independent living by herself, driving, going to the gym, etc and now she’s depressed without her freedom and we don’t want her to give up. Thanks again for your support it is so appreciated!! Hugs!!!

[anrean in reply to 2020CURE]

Dear Mitchell,

Feeling depressed because your life has changed so very much is normal. You might want to talk to her doc about an antidepressant to help. Lots of us have used them so please don't feel like this is an odd choice. I often wonder why docs don't pick up on the depression and/or anxiety and prescribe something to help instead of letting us suffer through the emotional upheaval until we figure it out ourselves!

Yes, being the caregiver is hard - I am glad your niece is there to help. Remember to take time for yourselves so that you can remain strong for your sister.

Holding all of you in my prayers

Lauri-Anne

[2020CURE in reply to anrean]

Thank you so much Laurie-Anne. An antidepressant is definitely not odd and is a really good point. I will bring it up with my niece. Thank you for all your prayers! Love this group!

Betty

[PegD]

I can only tell you that my genomic test results took almost 8 weeks because the first cell line was damaged in sequencing and we had to send a second sample. This was a rare occurrence. The good news is that my cancer remained stable during that time. Everyone has given you great advice. I added acupuncture to help with my side effects and general well being which I continue with every week. I believe it has helped tremendously. Wishing you all the best.

[2020CURE in reply to PegD]

Thank you PegD so much.... what an incredible group! Betty

[GMC1]

As a caregiver, I found when my husband was not good, neither was I. My daughter asked my doctor if he would prescribe some Valium for me to take on "down" days. He did give me a prescription for it and I do take it occasionally when I need to have a little help with the depression. Fortunately the bottle has lasted because I only need it once in a while, but it sure helps when the going gets rough. I think my not being depressed helps him too.

Gloria

[2020CURE in reply to GMC1]

Thank you GMC1 for your feedback