mets to lung
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I went back several pages on this thread to read up on what others have experienced with lung mets. One thing I came across was the mentor video. SusaninSF, was that you?I well remember Ann Sieberman from this forum back when I joined. She went by ‘ButDoctorIHatePink!’ She’s done remarkably well. I don’t have any information on the Pleurx; I hope you are able to learn enough about it to make the decisiOn whether or not to get it.
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MrsM,
Yes! That's me with Ann. I haven't kept in touch with her recently. Glad she is still doing well. When we met, she said she was having a hard time but she seemed so strong and capable. She drove 1.5 hours each way for our shoot and the shoot took all day. She's very kind and humble.
Looks like you have also done well for a long time.
Hugs, Susan
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Hi Susan,
I was diagnosed with MBC as a result of a large pleural effusion. At one point they drained over 3 litres off of my right lung. I could barely walk 100 yards without gasping for breath at that point. They initially drained about a litre off of my lung when they did the biopsy which confirmed breast cancer but the fluid just came charging back. They drained another 1.5 litres a couple of weeks later but, as you have indicated, it's super painful and causes extreme coughing when they take too much.
At that point I had a PleurX catheter inserted and it was a godsend. It was a relatively simple procedure but I did stay in over night, partly to drain as much as possible. I didn't drain myself, I had homecare come twice a week, each time they would take about a 800-950 litres of fluid. We hoped that it would dry up sooner than it did but I think part of the problem was that once they got to the point that the fluid was almost gone, I would get a shooting pain in my lung and start to cough. That irritated the lining enough that I think it caused more fluid to be produced (my body produces lots of fluid - same thing after my lumpectomy/nodal dissection). The irritation didn't last long though... generally the day they drained and then it would be fine. I couldn't swim and had to cover up the insertion site of the catheter when I had a shower but otherwise lived a completely normal and active life. I have a dog so do lots of walking and I worked full time.
After about five months the fluid suddenly stopped. I had the catheter removed at that point and, with the exception of a few small pockets of loculated fluid, have never had a repeat. Wishing you much success. It's terrible dealing with the SOB.
Pat
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Hi Susan, I am not familiar with your experience. I hope you can continue to swim and practice yoga. I get very grumpy when I have to take time off from exercise, so I understand your frustration. ~Kar
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Pat - Thank you for your comments on the pleurx drain. I have one scheduled to go in next Friday. I have had 5 thoracentesises done in the past four weeks. Drain 1: 1.1L. Drain 2: 1.35L. Drain 3: 1L. Drain 4: 1.25L. Drain 5: 1.7L. I have pleural thickening and also nodules in the pleural lining. I am currently on carboplatin/gemcitabine/keytruda for the my quick moving MBC. Prior to that, I was on Lynparza for 20 months. I have one more thoracentesis scheduled tomorrow - as I seem to always go to the ER on the weekends because the fluid build up is so quick - or they just don't drain enough. Ugh. I hate this.
Susan - I hope you get some relief in what ever direction.
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Holly. Sorry to hear that you are having so much trouble with the fluid. Those constant thoracentesis procedures can be draining - pun intended! It's really hard on your lung and they really aren't pleasant. I am sure the PleurX will be a huge benefit to you. Good luck!
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Hi lung mets crew. I have mets to both lungs (one nodule on each) as well as in mediastinal nodes. I am on gem/carbo and my first set of scans, after 3 cycles, showed some shrinkage and some stability (the nodules shrank about 1/3 and the nodes are stable or a bit smaller). I'm triple negative so I had to go straight to chemo.
I've been mostly asymptomatic since diagnosis as Stage 4 in November. But I've become very conscious of my lungs, and especially any wheezing or breathlessness. In the last few weeks, I've noticed a slight wheeze when I wake in the morning and in the evening. Sometimes it's when I breath in, sometimes when I breath out, and only ever when I breath through my mouth. I feel a bit 'phlegmy' (ew) and it feels like noisy breathing coming from the top of my throat. If I drink some water or clear my throat it goes away.
Have others experienced this? I know a wheeze is common with lung mets but I'm not sure what it is meant to sound like - this is only audible to me, not the people around me. I mentioned it to my oncologist but she thinks it's the chemo (? does gem/carbo do this? I am very anaemic at the moment which makes me breathless when I walk up the stairs, but this noisy breathing happens more if I wake in the night etc).
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Phet, I occasionally have “wheezing”. Just like yours, it’s only audible to me. I don’t think it’s related to any of medications I took. I too am not sure where it’s coming from.
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Hi there, phet. I've mostly dealt with bone mets but the CT scan I had at the end of March showed a small amount of activity in the lungs. In January, I'd had Covid, which included having a fever for 14 days and a severe cough the entire time. I feel mostly recovered from it, but still feel slightly out of breath after climbing stairs. And tho not often, once in awhile, I can hear a wheeze in my breath.
I asked my oncologist if having Covid could be responsible for some of the lung findings on the scan. She said it was possible but they just don't know enough about Covid to determine exactly if or what.
Just yesterday, after reading the scan results over yet again and trying to understand them, I decided to look up some articles and videos on improving lung capacity. Basically, simple breathing and deep breathing exercises that can be done a few time during the day. I'm a lazy, shallow breath breather as it is, and I think the exercises may help me become more aware of my breathing habits. There are quite a few articles and videos on the subject to choose from. I did some exercises already and want to continue to see if I notice any improvement in my daily life and on the next scans.
I'm no expert on the topic, but I thought I'd let you know my train of thought. Maybe you could look up and try some breathing exercises to see if they help.
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Phet, I experienced wheezing similar to what you have described after about 3 months being on treatment. At my following appointment (the wheezing had stopped by this time), my doctor said my lungs sounded great and I no longer had any decreased breath sounds, which I had since diagnosis. I haven’t experienced the wheezing since.
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Hi All, I also have intermittent wheezing that I assume is a function of the damage to my right lung from the pleural effusion. Like figtree, I don’t think anyone else can hear it.
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Thank you everyone
It's such a stress isn't it, always noticing every little thing and wondering if it's the cancer. Ilowen's answer has reminded me that when I went into hospital triage with a temperature a week or so ago (I'm on gem/carbo chemo so have to be checked out for an infection) the registrar listened to my chest and said everything sounded great there. If I had mediastinal wheezing he should have picked it up with the stethoscope I hope? So perhaps it is just this long term effect of the chemo and being a bit 'flu-y'. I hope so. I'll also try the suggested breathing exercises! x0 -
Hi All
I too have that wheezing almost in the throat. It started after the broncoscopy and starting I branch. It happens when I’m lying down at night and very annoying!
A question - hope it’s not stupid!
I’m due to start the 4 th cycle of Ibrance/Faslodex and also due for the covid jab. im supposed to get scans soon so how can they evaluate the medistinal node activity and if the treatment is working if the covid jab can make your lymph glands swell?
Best to all
Ann
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Ann
Can you put off your jab until after your scan? It may be prudent. If it were me, I would call my doc and get his/her advice on this. You don’t need to be worrying about if a reaction to the jab could contribute to any nodechanges.
Dee.
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Pat,
Thank you SO much for sharing your experiences with pleural effusion and pleurx. I will see the Interventional Pulmonologist on Thursday morning and we will see what is behind my SOB. I'm sure it's more fluid in my lung following my Thoracenteses on 2/24 and 3/13. If it is fluid, I can have a pleurx put in on the same day. Crossing my fingers that it's not due to growing lung tumors.
Holly,
Hoping for the best with your procedure on Friday.
I have wheezing sometimes with exertion. I often have a rattling in my throat/lungs. It feels like it's mucous at the back of my nose but doesn't go away if I breathe through my mouth.
Hugs, Susan
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My lung biopsy results., I have lung cancer.
I'm being referred to a thoracic surgeon. I'll be having 2 surgeries., one to remove the lung cancer and one to remove the bc recurrence on my right breast mastectomy side.
My oncologist said the lung cancer was caught early.
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Pabbie, those are very sobering biopsy results and I'm sure something of a shock to you. It is a lot to take in. I'm sorry you're going through this. It sounds promising that the lung cancer was caught early. Sending you well wishes.
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pabbie,
I am so sorry for that slap in the face biopsy. I’m glad they caught it early and you can have surgery!!
Just a note of encouragement, my sister has 2 different primary lung cancers. She is 9 years out from them and doing good. She has had surgery, chemo and has taken opdivo for the last 5 years- minimal stable disease.
Let us know how it goes so we can support you!
Dee
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Thank you for your kind words. Take care of you too.
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Thank you Dee. Your sister's story is inspiring. I meet with my thoracic surgeon on Thursday.
Take care to you too.
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hi Pabbie
All the best with follow up treatments
Great to hear that the lung nodule was diagnosed correctly and treament to start asap
Bright in hope
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Pabbie, best wishes with the treatment!
I had a phone consult with respirology last Friday afternoon due to ongoing intermittent shortness of breath/pneumonitis following rads for my lung met in Dec.
I'm supposed to have spirometry & lung function tests this week + a fresh chest xray and then they're to make suggestions this Friday. Not sure how it will work out as we've got 3rd wave of covid swamping hospitals so all respiratory specialists are kind of busy atm. We're holding my immunotherapy while we wait for respirology to decide what to do so I'm hoping I can these tests and a treatment plan from them soon.
I still don't even know if the rads worked on the lung met. Too messy for the radiologist to see last CT scan. I have this cxr coming up and then a CT with contrast on May 1 which hopefully will show us more. It will be very frustrating if the met is still there & all I got for my troubles was radiation damage to the lung ...
really hoping that's not the case 0 -
Moth, I hope you can get your tests and scans soon. Hoping the radiation did the job. I bet it did! I am looking into getting SBRT or something similar for my lung nodules, so I am extra interested in your experience.
Susan, how did your appointment go last Thursday?
I finally saw a lung specialist today, and he's ordering a few tests to see what's up with my stressed lungs from Covid-pneumonitis-cancer. I am improving since I stop everolimus. The lung issues we all are going through can be scary. ~Kar
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After being diagnosed with breast cancer in 2010, found out today that it has spread to my lungs. Ten years later. I’m still in that stage of confusion and doctors and more scans. Not what I at all expected. It was found first in a random scan done when I had to go to emergency for diverticulitis that randomly happened. Thank you to everyone for sharing your stories so I can learn this new reality.
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Hi rachel5738, I'm sorry this is happening to you. It sucks a lot.
hang in there & let us know what your doctors are saying and what the scan results are.
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Rachel,
So sorry that you are joining this group, but you will find encouragement, and shared experiences. FYI- They found my metastasis because of a back mri.
Right now is probably a fog. Breathe, learn, process, cry! This stuff stinks.
i don’t want to overwhelm you but here are some things to ask:If the tumors are limited to the lung and just a few, they may treat it as oligometastatic. That means they can try for a cure.
Are they sure it is breast and not cervical? If possible, try to get a biopsy so they really know what is going on and have the best info to treat it.
I don't know about Canada, MOTH may know- but in USA have access to next gen sequencing(Foundation one, TEMPUS,Caris etc.) to tell about mutations that can steer treatment choices.
I had one tumor that popped up in the lung(also have liver mets but they were not active at the time) I had the lung treated with SBRT radiation and it is now dead- nothing else in the lung and no new lesions. I will find the article on this and post it again.
Hang in there
Dee
https://ascopubs.org/doi/10.1200/JCO.20.00818
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Thank you so much for the support. It’s a bit of a fog today for sure. They are doing biopsy early next week to confirm but thank you for the tips to ask. I can’t express how appreciative I am.
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Kar,
Thanks for checking up on me. Had another 800 mls of pleural fluid when I saw my Interventional Pulmonologist so he put in a Pleurx. My only other choice would be surgery and that may not work and is riskier.
The first few days it was very painful but gradually got better. I'm even able to continue with my yoga and dance. I was on a MWF drainage schedule but I spoke to a friend who did it every day and was dried up after two months. So I switched to everyday drainage. With help from my husband, the drainage has become pretty quick, about 15 minutes from start to finish. Always worried about the risk of infection since it's not like a port under your skin, the catheter goes straight into the pleural space in your lung. No swimming or bathing which would be a big drag since I have a trip to Hawaii in August. Crossing my fingers I will have it out before my trip.
Hugs, Susan
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SusaninSF
I'm glad you are making it work and being able to stay active. 🤞🏻To be out For Hawaii!
Dee
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Thanks Dee! And congratulations to you that the ARV-471 is working for you!
Hugs, Susan
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