I was diagnosed with MBC in 2017, my initial treatment worked very well - no progression for 5 years. Then progression: in bones (l already had multiple bone Mets skull, ribs, sternum . . . spine and hips). . . brain . . . pleural effusion . . . increasing pleural effusion increase in size of lung mets and new liver mets.
Decided January 15, no chemo, no more cancer treatment.
My questions:
- If you have or have had a pleural catheter (Pleur x) placed,
Please tell me about your experience (the placement itself doesnt sound much worse than a thoracentesis and l have had one already - l don't want to keep going back for multiple thoracentedis procedures.
What is it like living with the catheter? Is showering a hassle? Are the dressings for taking a shower very expensive? What else don't l know???
- lf you have had a Pleurodesis, Please tell me about your recovery and your lived experience after that.
I think this is my first post ever.
I always read posts and try to respond when l think l can be helpful and/or supportive.
Your responses to my questions will be most appreciated.
Your supportive responses will also be most appreciated.
I wish and pray that everyone here finds love, comfort and peace. ❤️🪷🙌🪷❤️
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NPmary
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Hi. I was diagnosed De Novo MBC in August 2022. I had a large pleural effusion, as well as extensive mets to lung, liver and spine. I had a pleurodesis which did not work and the pleural effusion came back. In November 2022 I had an indwelling pleurex catheter fitted, I was sedated for the procedure which was a bit uncomfortable but not painful. I had District Nurses call three times a week, they drained 500 ml of fluid each time. After a few weeks they reduced to two visits a week and then once a week draining 500 ml. I found having the drain a bit uncomfortable at times, especially when I was out in the car, going over bumps and turning corners. I was unable to lie on that side. I had Rocket bottles which came in a kit with dressings, gloves, antiseptic wipes etc. The dressings were supposed to be waterproof but the nurses said to try not to get them too wet. I mainly had a bath using a seat so the dressings didn't get wet, however on the one occasion I decided to have a shower the dressing got soaked straight away and the area stung like mad. As the bottles and dressing come in a kit I didn't have any spare dressings. Twice I got a slight infection where the tube went into my body and which was treated with antibiotics. The site did get sore a few times but was treated with Hydrocortisone cream. The draining itself was uncomfortable but not painful. You can be taught to do the draining yourself but I was too much of a coward to do that. After one year the nurses were only draining 200 ml weekly so I was able to have the Pleurex catheter removed. I found having the drain livable, but sore and uncomfortable at times. I would not have risked going swimming or having a bath. I live in the UK so fortunately I was able to get the bottle kits on the NHS, I was never able to get any spare dressings. If needed I would not hesitate to have one fitted again. Sorry if the above is a bit long winded. If you have any questions please let me know, I'm happy to help. Wishing you all the best.
Be sorry for nothing! Thank you so much for telling me about your experience, it is very helpful. I didn't know the pleurdesis could fail, everything I have read has made it sound like a guarantee that the effusion will not return. I will let you know how it goes for me. Thursday I will have a chest x-ray, an echo Anda cardiology consult.
Thank you so much, I am glad you were able to have the drain removed.
I was told that the pleurodesis fails in about 40% of cases, unfortunately I was one of the unlucky ones. I would say that having the pleurodesis was not an unpleasant experience. Wishing you all the best for Thursday, please let me know how you get on
hi . Your note is time appropriate for me . I am on my 4th year on Ibrance & lethrozile but now some problems. I am scheduled for. Lung biopsey & I think it is the more intensive one. It is a collapsed part of the lung either cancer or further progression of COPD.
Are u sure u want to stop everything? I certainly know what you are talking about. I just turned 79 last week & I think that is a pretty good run. I was pretty sick in December as I was short of Iron & I didn’t know it . Have u experienced a collapsed lung? Please take care .
Thanks so much for responding. Yes, I have had a right middle lobe collapsed lung which did resolve, now it is atelectasis, nodules/tumors and effusions. I turned 73 this past October and feel I have had a pretty good run with this disease. I don't want chemotherapy, if I were to get a bad case of hand foot syndrome - I wouldn't want to cope with that - I don't want to stop walking before it just became impossible to walk because of dying and I don't want to stop sewing or journaling and I don't want to stop doing the little bit of things around the house I can do.
When this all started one of my greatest wishes and preparation has been hoping to know and have peace (reasonably so) to know when I should stop treatment and to know how I should talk about this with different family members.
Thank you, so much for asking and for being here.
Wishing you the best.
I am guessing you are going to have a bronchoscopy and lung biopsy.
My guess is that the nodule or tumor is fairly large for your doc to be suggesting a biopsy. If it were me I would want to know: what is the benefit of the biopsy, will it determine treatment, should I have genomic blood testing done before a biopsy, if the tumor is 1 cm or less in size (and I certainly am not a doctor or an expert) I would not be considering a biopsy at all. Smaller lung nodules often are there because of inflamation and are usually not considered a big deal.
I hope I have not said anything to scare you or make things worse in any way.
I have lived with many lung nodules/tumors since the beginning of this illness.
It is me again. Thanks so much for being there. The dog is attended to ‘ I want to say that I love walking too & I judge how I am doing by how well I am walking my poodle -Jack. I don’t even think that I would be a candidate for a second round of chemo. The first round ,in 2008 put me in intensive care which was quite unusual & it was touch & go a couple of times but I fully recovered even though I came home on a walker. The spot was there from the beginning & it was opaque & they were hoping it was inflammation. I really don’t know but it is nice to talk with others,like you, that understand how it is all so confusing. You are not scaring me at all - it is so much worse when friends & family don’t understand at all. I certainly know what is ultimately going to happen & I hope I can handle with grace’ but we will not know that until we are through the gate. I will let u know after I find out when the biopsy is & what it involves . Take care -talk soon. Lou Anne
It is me again. I had the biopsy & of course it is breast cancer. (At least it is not lung cancer proper) Now I know it was breast cancer right from the beginning (4years ago) . They are not talking about Copd as much . (Very mild)!I will be changing the first line of treatment to a second but this will not happen until early May. Doctor assures me that this will be OK I am going on a short holiday early May & want the insurance to continue’ This is quite a trip we are on -you can not think about it all the time or you will go crazy-but it is there all the time. I hope that you are still managing with the drains & you can do some fun things. Take care of your mental health & keep in touch - Lou Anne
Thanks for staying in touch. Have a wonderful trip. Your poodle sounds delightful. I really hate it when we know what we have is a cancer and docs hold out hope and act like it's realistic that it is not a cancer.I hope you do well with your next line of treatment. Take care of yourself.
My drain is working OK but I'm having trouble figuring out how much to take out - I don't want to wait il it hurts but I don't think I've been taking enough out.
I'm getting closer to wanting hospice at home I'm a little afraid of something going wrong with the drain and hospice not being able to deliver care.
Hi again & thank YOU for responding back. I never had a biopsy to begin with as I was having trouble breathing & I didn’t even believe him when he told me he would have me breathing in a month. That month was tough with the side effects but I was delighted when my breathing returned . The doctor thought we didn’t need a biopsy right now as everything was responding so well. My dog I’d barking at me & I will send further notes after I attend to my little darling Louanne
I don’t have any experience to share but it is my fervent belief that everyone knows when they’ve had enough, done enough, or their body can’t take any more and when that happens it’s okay. At the end of their lives, both my parents were looking forward to their suffering ending. My father had congestive heart failure and diabetes and dementia was starting to impact him and my mother had Alzheimer’s. My father stopped making plans and stopped taking his medication. My mother told anyone who’d listen that she’d rather be dead than live as she was and really she was existing not living by then. We had hoped they’d make it to celebrate their sixtieth wedding anniversary but dad had no intention of being there and he wasn’t.
Accepting that we don’t want to continue treatment is a personal decision and it doesn’t have anything to do with our age or potential treatment still untried by us. I’ve read posts from younger women who have decided the side effects or the disease itself are taking away any enjoyment of life and they’ve stopped treatment. Quality of life is important.
a toughdecision. You’ve been through so much already so you’re already one tough cookie who’s ready to ace this latest challenge and more. Hoping it goes well so you can live with the drain and am sending extra special love and best wishes to help you manage that dratted cancer progression.
I do not have any experience with this, but want you to know that I am here for support, kindness and sending you positive energy with hope that others will be able to ease the not knowing part with their experiences. Blessings
Thank you. I am at peace as much as l can be. I am not at all actively dying but l am much weaker, slower, doing less. My hope is that when l do become totally dependent on others for self care that that period of time won't be very long. As much as l can (which is often like a grain of sand or mustard seed) l am trusting God/Spirit to BE and to catch me.💕🪷💕
I'm so sorry you are dealing with this situation. Glad you received some advice on what to expect. Sending you hugs and prayers for whatever decision you make. Hope everything goes well for you.
Your posts have always been knowledgeable and helpful. They will be missed.
I am sorry you have reached the point of no return.
I envy your peace with that. I am 76 but feel I have not had a good run...yet. Silly. I don't know what I am expecting to change.
There have been times I have been so miserable I could see dying was preferable. Sounds like you aren't, actually; you are still enjoying your pleasures in life. Will you share your journal possibly? I am trying to support someone else who has stopped treatment. She was hoping for more time, but seems...cheerful, and very much herself. I keep wanting her to explain what that is like. Getting to acceptance. Knowing her body will fail...though her spirit is not.
Tammy, I have been blessed with time to prepare for this. I went to meetings with a death dollar which were very helpful. I went down many rabbit holes of reading about death and dying, I am determined to not die in a hospital and especially not in an ICU. Thankfully I have a wonderful supportive daughter, we have lived together for many years. I read many spiritual books, and poetry. 2 short ones you and your friend might find helpful are: Light in the Shadows by Hank Dunn a chaplain who has written several helpful little books; Healing the Dying by Mary Jane Linn, Dennis Linn and Matthew Linn. Journals that have been a springboard for putting whatever I was learning, experiencing, remembering or quoting on paper have been: Gratitude Journals by Denise Albright and a journal called Remember Your Death by Theresa Aletheia Noble, FSP. 2 books by Brad Jersak have been personally helpful for me: A More Christlike God and A More Christlike Word. Everyone has to find their own way. We all struggle. Oh, Barbara Karnes, hospice nurse has a blog, a newsletter, a website and many pamphlets that can be a help to caregivers and to people facing death (that really is everyone). No matter what I do think Love/Spirit does hold us at the end. I was a nurse and nurse practitioner for many years I had the privilege to care for many people and to know that even though death is a mystery it is a sacred silence for those who accompany the dying.All of the resources I mentioned were helpful to me at different times, they may not be for you. They can easily be found by googling or on Amazon. There is certainly much I left unsaid but am open to sharing with anyone on this site.
Thank you so much for your post. I appreciate so much your sharing with us. I often think about when I will make this decision to go off these drugs. it’s very supportive to hear your story. I couldn’t agree more that family and friends do not understand this process.
I wish I could advise you about your question, but I am not knowledgeable.
I would ask you about your cancer journey though. What what subtype of breast cancer did you have originally and which mutations? I am curious what your oncologist thoughts were on why the drugs were no longer working? Of course, I wish that there was one more drug we could try for you.😻
You're welcome. I had ER÷ PR + Her2- stage 1 breast cancer, lumpectomy, lymph nodes removed, radiation. Aromatherapy inhibitor was prescribed but I couldn't tolerate it. 10 years later I was diagnosed with MBC, thought I would die in a few months, bone mets everywhere, soft tissue/lymph tumors, lung nodules, pleural effusions, pericardial effusion. I had palliative radiation for pain, Ibrance and Letrozole and Xgeva were like wonder drugs. Effusions resolved, everything was stable for 5 years. Genomic testing didn't reveal any mutations that could be targeted. Then a small brain tumor I had cyber surgery that shrunk the tumor in half but then developed an even larger brain necrosis (it can act just like a tumor it can get bigger or smaller) so far it's not much of an issue I had some cognitive issues ut that resolved. Systemic treatment was faslodex. The Ibrance etc stopped working, the cancer was thought to develop resistance to the meds. Treated with just faslodex for a year then last October I was hospitalized for the first time with chest pain, pneumonia (believe it wasn't pneumonia at all, all cultures negative and not even a fever - probably pleurisy and the pleural effusion) lung nodules now described as growing and one of them was now 2.3 cm) faslodex was stopped, waiting for genomic testing - this time it was + for the ESR1 mutation (physiology was interesting to read about the mutation often develops after treatment with Ibrance). Started on Orserdu which didn't work. The doc had hoped the pleural effusion would disappear once "pneumonia cleared" - I really didn't hope this, couldn't believe it. So now I have a new bone mets besides all I already had, New liver mets, lung mets, bilateral pleural effusions and a trace pericardial effusion.Why didn't orserdu work? I didn't ask my doc, I just figure it's my disease process and it didn't work even though I have the gene mutation.
It does work for others.
If I was younger and had younger children I would probably be on chemo now, but I'm not.
Wish you and everyone here many birthdays, holidays and anniversaries. ❤️
Oh, my oncotype score at time of 1st dx was only 7 - I didn't expect to get mets.My hormone and Her2 status didn't change with the biopsy that proved metastasis.
NPMary- I am sure that I have benefited from your wisdom previously and wish I could give info about in dwelling catheter but can’t.. but glad you reached out here where the collective wisdom is great! You have silently been going thru so much… but always helping and adding a lot when you could so I hope a few people can make some good suggestions for you!
I’m so sorry I can’t answer any of your questions but I am lifting you up in prayer for peace and comfort in whatever decision you make. He knows the numbers of hairs on your head and everything about you so I hope you can trust in His plan. I will continue to pray for you! Know that you are loved. 🙏🏻💗
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ER+ HER2- MBC treatments
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