pleurx Catheter Severe Pain after drainage - 1268196

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peggytoso
pleurx Catheter Severe Pain after drainage - 1268196

My mother was diagnosed with lung cancer 3 yrs ago, did chemo and radiation. Cancer is back,Andenocarcinoma but this time with an ALK mutation.  She will start Xalkori today. She had the Pleurx catheter put in 2 wks ago and drained over a liter in the hospital. She was in such pain in the hospital that she needed morphine (and she has a very high tolerance for pain). When she drains at home she has mild discomfort in upper back while draining but after she has shortness of breath and excruciating pain for several hours after. Is this caused by drainage rate/lenght of time (the past 2x we drained to the point that there were air bubbles in the canister) or could it be something else like a trapped lung or the catheter not installed correctly?

catdander
Hi Peggy, I'm so sorry your

Hi Peggy, I'm so sorry your mother is having this problem. A call into her onc is the fastest way to get the problem sorted out. I hope she has sufficient pain management at home. If not a call into her onc is again much in order. Pain is something that can and should be managed.

I'll make sure a doctor addresses your question.

Much luck with getting this sorted out.

Janine

peggytoso
After having severe pain

After having severe pain after drainage we decided she should take percoset before she drained even though she doesn't like to take pain meds. This helped for the pain immediately after and she was able to take a nap, but when she woke up the pain returned.
I appreciate your response and thanks for the help!

catdander
I wonder if your mom is in

I wonder if your mom is in the old school of thought where it's believed to be poor judgement to use pain meds. I know the best solution is to fix the problem but that isn't always possible. When my dad died of cancer in 1970 there wasn't strong pain meds given outside the hospital and really not enough given in the hospital to settle a painful body. Today it's considered best practices to stay as comfy as possible. While opiates can fog the mind when first taken, when taken appropriately your body adjusts and most often people find they function much better. As a caregiver and daughter I know you know this is all a delicate balance and you being here shows how lucky she is to have you. :) Too, there are many tricks that may help like warm baths, massages, acupuncture... Here's a post on the subject from the director of palliative (comfort) care at Stanford, Dr. Stephanie Harman.  I know you didn't ask for all this info but it's a subject I feel very strongly about. Janine

peggytoso
Thank you for the info!

Thank you for the info!

Dr West
Draining a PleuRx catheter

Draining a PleuRx catheter can cause pain from the re-expansion of the lung after it has been compressed. However, it's also possible that a nerve could be irritated by the catheter. It's very reasonable to check in with her doctor to check whether any further evaluation would be indicated.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

nurselisa1
Hi Peggy

Hi Peggy
I agree with Dr. West. I am a Nurse and have had my PleuRX cath for 4 months now. The pain after insertion was worse than any of my biopsy surgeries. I did need pain medication then.

I found it helpful to sit down while I drained my lung and always have the clamp closed before pushing the the suction down then release the clamp per comfort. It is also ok to clamp it if you feel pain and take a few breaths and then release it slowly again. I also found it helpful to cough during the drainage and when I feel my lung re-expand.
I used to get 500cc a day 1000cc a week before my pleuRX. Now I get around 75-150 every 3 days.
I have a rare RET mutation stage IV lung Cancer on cabozantinib with good response after 3 months.

As a nurse I also specialize in Central lines and Pediatric Oncology so I made changes to the way my catheter was taken care of. For starters you do not need to redress this every day. I change my dressing every 7 days or as needed. I cleanse around the catheter with teatree oil or chloraprep or another antibacterial after showering let everything dry before putting the dressing back on and only put the transparent dressing over the insertion site. The rest of the catheter I leave out so that I can drain it with out removing the entire dressing. Gauze has been known to increase chance of infection under line dressings so only use the gauze if you have drainage around your tube.

I always cleanse the end by 10 rotations with alcohol and then let it dry for 5 seconds prior to inserting the suction tube and before putting the cap back on.

I hope this helps your mom.

~Nurse Lisa

Views expressed here are not meant to be medical advice but represent my opinion, personal experience & from evidenced based literature I study, not those of any health organization or Institute.

catdander
Forgive me if I've welcomed

Forgive me if I've welcomed you before but I promise I won't do it again.
Hi Lisa and welcome to Grace. Such horrible circumstance has brought you here but your knowledge can be so helpful to so many.

I hope you continue to do well and work is an option for a long time to come.
All the best of luck and hope,
Janine

debbiestokke@live.ca
Back pain after draining

Hi Nurse Lisa

So do you just leave the entire tube loose and dangling under your clothes? I'd be afraid of accidentally pulling on it somehow and creating a worse problem. But I have also developed severe dermatitis from sensitivity to chlorhexadine, foam pad and tape adhesive and Tegaderm. So I like the idea of adhesive only over the insertion site....I think!

Ive had my pleurix for 5 weeks. My thoracic back area hurts so bad after draining especially the area between the medial border of the left scapula and my spine. Sometimes shoulder cap to mid arm and armpit pain.  Only about 250ml drained. Used to be weekly. We are trying Mon and Fri now.

Today it hurt so bad after draining I could hardly be still or find a comfortable position to get relief. I've medicated with Advil and cbd. It's finally settled down 9 hours later. Any idea what this lasting, post drainage pain is caused from? Any tips to reduce pain?

Thank you!

Debbie, RMT

JanineT Forum M...
Hi Debbie, Welcome to Grace. 

Hi Debbie,

 

Welcome to Grace.  I'm so sorry you're having these problems with your drain.  Until I look further for resources I wanted to leave this info.  I think you may not have anything to need tucked away like the bulbs used to catch drainage after a mastectomy but I'll leave following anyway and you can let me know.  My niece just had reconstructive breast surgery and swears by the shirts her mom bought before mastectomy surgery.  They snap up the front and have pockets built in all the way around the inside to hold the drains.  She also has a clip on the drains that we connect to the shirt.  They remain tucked away.  I don't know where she got them but they could probably be easy to find online with search terms mastectomy, drains, shirt, pockets. 

 

How often do you drain?

 

Will see what I can find and check back in a bit.

 

All the best,

Janine

JanineT Forum M...
this might be helpful.

this might be helpful.

debbiestokke@live.ca
Thank you Janine. No I don't

Thank you Janine. No I don't have anything to tuck away. Just the pleurex tubing. Homecare was drainqing once per week. Last week we drained Mon and Fri as I was s.o.b. on Fri. But I'm also anemic so it could have been that too. My cancer is active as I've made the decision to stop chemo in July.  We drained again on Mon and that's when more pain than usual developed. Usually drain 200-250 ml max. This pain feels nervy especially down my arm. I think I'll go back to once a week and see if that allows the catheter to remain floating instesd of resting on a nerve. Don't know what else to do.

Debbie, RMT

JanineT Forum M...
Debbie, I appreciate you

Debbie,

 

I appreciate you explaining your situation and I'm so sorry you're going through this awful disease.  The thread I linked to yesterday has some thoughtful insights on lessons learned from catheters.  Laya, in particular, noted, " My Mom had very little pain from the catheter itself, but had pain when they would drain the fluid. It was explained to us that there are a lot of nerve endings in the pleura. . .so there is a pressure/pain feeling if they drain too fast or too much at once (a vacuuming sensation). It's best to go slow (keep your thumb on the little switch-thingy and pace it slowly) - - even start stop start stop...etc. There shouldn't be a rush to get the fluid out as quickly as possible. Do it over a 15-20 minute period of time (for 300-400 ccs). Your Mom can tell when she starts feeling super uncomfortable and you guys should stop."

 

This post from Dr. Harman might be helpful if you scroll down past the "treat the underlying cause" and start at "oxygen therapy" she talks about some therapies that help with feeling of sob. 

 

The name of the game is comfort.  I don't know if you've brought in hospice yet but from what I've learned from the doctors and members here throughout the years is it's never too early to get them involved, preferably as soon as you stop anti-cancer treatments.  These people have the very best tips and tricks of the trade when it comes to getting and keeping you living with the best quality of life as possible. "Palliative care" is the official term used while one is still actively using anti-cancer treatments and after.  Hospice care is specific to those who are no longer using anti-cancer treatments. 

 

I hope you get this sorted out.   Keep up the questions if needed and please do keep us posted if you feel like it. 

 

Janine