Pleural Effusion / PleurX Drain

[H_Daughter]

Mom had the Gamma knife May 3rd, quickly tapered off steroids to have Infusion May 6th, then ended up in ER on the 9th. She has a fever and lung fluid build up again. Back in March they drained 1.8 liters from her left lung. This time it was just 1 liter, and the doctors said the drainage tube would be very helpful for her situation. Today we had a home care nurse come by to teach us how to properly use the drain. We drained 300ml, so it's still filling up pretty quickly. She will have the Plerux indefinitely, but hoping it helps us avoid more hospital stays. It always takes her awhile to bounce back after the hospital, and this last one was not great. She was not on the cancer floor and the doctors/nurses messed up her med regimen, which I am Not happy about. Her entire system had been messed up, and paired with a new apparatus sticking out of her lung she has been in so much pain she's asked for the morphine (which she only took after spine surgery and hates how it makes her feel). Stress levels have been high becuase of her pain and me adding more responsibilities to my weekly lists. I'm feeling overwhelmed and really just want to sleep for a week.

[HSsweetheart]

Your Mom's situation reminds me of my own Mother's hospital stay. I too was frustrated with staffs inability to provide the most basic needs; how hard can it be to read a chart, dispense meds and respond to a call light, right? At some point I realized I was hypersensitive because this was my loved one not getting the care she needed. I had to be more proactive. I learned that the squeaky wheel gets the grease so we posted a family member by her bedside round the clock and everyone walked out to the nursing station for face to face contact when needed. If it's just you, perhaps you can solicit your friends or your Mom's friends to help.

I hear that you are stressed and need some relief. Even a few hours if respite from friends is helpful; reach out. There are respite services available for a fee. Take advantage of them. Take care of yourself. We're here.

[SGHSweethearts]

H-Daughter,

I am so very sorry to read all this that is happening with your mother. I haven’t had to much to share with you as I have not had any experience with anything related to brain Mets, but I just went over all of your posts, and I especially hate hearing they take people off steroids quickly. I have learned with my husband that we have to go off steroids very slowly. He was on 10 mgs of steroids for several months while he was on the Opdivo and it was ok. He has Stage IV Advanced Metastatic Melanoma and his brain is the only place it has not traveled to, but he has been NED for over 15 months. I’m so sorry to hear about your experiences at the hospital with her meds. Unfortunately this happened to my husband as well. I had to sleep there every night for 3 weeks, 1 week at a time each stay. and I was basically on top of all of his care, meds and all. I did go to work for a few hours during the day after I made sure he was all set. Like HSsweetheart said I will pray that you can find some friends, or any other family members to come and sit with her, so you can have some rest and time to yourself. This road is such a tough one, and you are doing an amazing job. Your mom is blessed to have you to be there for her. I am curious how long was she on the Morphine? And how much? My husband was on 15mg of Morphine twice a day for at least 20 months. Sounds like with so much pain she must be on a much higher dose. My husbands body did adjust to the morphine and he functioned normally driving to work almost everyday. I will pray that she can adjust to it as well so she can be free from pain. I know it’s so easy to say, and much harder to do, but hang in there.

Michele

[H_Daughter in reply to SGHSweethearts]

Hi Michele,

The dosage for my moms morphine is only 10mg, and it's made her feel horrible in the past so she only uses it when the pain is completely unbearable. She was on it for a few weeks after her spine surgery, but now mostly takes percocet and muscle relaxers daily. Also has to be on a stool softener because she had Horrid opioid constipation earlier this year. I know its not ideal to have her on a stool softener long term but not many other pain meds actually work for her without her feeling too out of it everyday.

I also recently found out the exact mets of all her tumors and it was definitely more than we had been told initially . We are still several weeks away from her full body CT to compare to the scans from January when we first found out. Although I had a doctor tell me (when they did scans for the lung drain) that not much has changed. So now I'm just curious to see if they will keep her on Keytruda or switch to Opvido. I've heard Opvido has more side effects than Keytruda, but also that it depends on the person.

Thank you for the prayers and continued support. Sending my love and prayers to you and everyone else that has to deal with this scary disease. It is a terrible journey to be on, but I'm so grateful for this wonderful community everyday.

Lily

[Vflowers]

Hi

This brings back so many memories.

I know you want and need to be there for your mom. As a former caregiver, please make sure you are also taking care of yourself.

Ask for some assistance in taking care of your mom. Palliative care. The hospital has resources, most don't know about.

You are doing an amazing job and I know your mom must be thankful to have you in her corner.