Topic: mets to lung

Jun 6, 2021 11:05AM Sadiesservant wrote:

Hi Rachel, I’m sorry to hear about the ordeal you are going through. I can’t really help as I had pleural mets so a biopsy would have been difficult. Generally my MO is not keen on biopsies as he worries about the risks which you have experienced. I hope the surgery goes well.

Jul 2, 2021 09:10PM rachel5738 wrote:

Hi Dee. Well I am recovering from wedge resection surgery that was performed on my right lung two weeks ago I have had awful time getting back up and going. This surgery took the wind out of my sails for the last couple of weeks. I have meeting with oncologist and surgeon this morning to kearn more about the tumor and next steps. The good news is that after a separate MRI - the docs determined that they do not believe the spot on my pelvis to be anything cancerous so that was good news. Therefore, I’m dealing with the Mets to lung which they cut out in wedge resection. I’m not sure what treatment would be next as there is nothing else but I assume they will want to be sure it’s all gone in lungs? Any ideas?

Aug 11, 2021 04:11PM Sadiesservant wrote:

Hi Karen,

I’m sorry to hear of your news. I’m glad your MO is not giving up on Xeloda so quickly however. It seems to me there is a tendency to be a bit over reactive with more frequent scanning that we see these days. As long as you are not suffering with side effects from the progression….

I know how you feel about losing so many lately. I find it hard as well as it seems to have come in waves. So many of those who I leaned on when I was initially diagnosed are gone. It makes it hard to forget the reality of our situations.

Sending hugs.

Aug 12, 2021 03:15PM Karenfizedbo15 wrote:

Hugs appreciated Sadie!

Aug 12, 2021 03:36PM Sadiesservant wrote:

Hi Susan,

I would suggest your pulmonologist has never had his lung drained if he thinks it's not normally painful.. LOL! Like you, I had a large amount of fluid build up between draining. In my case they were doing it twice a week which resulted in about 800-900 mL being drained each time. My oncologist hoped that we would be able to use the amount of fluid as an assessment of whether the treatment was working but that didn't work out. I had so much irritation after each drain that I am sure it simply stimulated the lung to make more fluid. It sounds like you may be in the same boat. I suspect the problem is that some of us are just more sensitive/attuned to our bodies which means we "feel" things. (My MO was shocked that I have pain with my liver mets as I only have a couple but I knew weeks before the diagnosis that it had spread due to weird jabs..)

There are a couple of tricks that I learned which may help. First, I had the nurses drain the lung SLOWLY. If they went too fast I had a lot of irritation, coughing and pain. If they went reasonably slowly I was able to be much more in control of the draining process and could head things off at the pass before it went too far. (The nurses often wanted to have the bottle on the floor beside my bed thinking if it was below the level of my body it would work better. That's not necessary... it's a vacuum.)

Secondly, don't let them try to drain everything. The PleurX bottles are under a pretty good vacuum (or they don't work) which is damaging to the small capillaries in the lung. I found that if they went slow, I could tell by the rate when the lung was nearly drained (don't let them speed things up at this point - they will try, trust me). At this point I would prepare myself. Once it got to the point it was essentially done I would get a pain that would shoot up my chest in the right lung. That was our cue to STOP. If we followed this procedure I would have a bit of discomfort for an hour or so but it wouldn't last. If they ignored me I would be in discomfort for a good 24 hours which, in your case, would end up being pain all the time.

My lung did eventually dry up after about six months. It wasn't really a gradual reduction of fluid. As I said, I think there was enough irritation that my body just made more fluid to ease the irritation. My body is good at making fluid... However, my personal opinion is that the constant draining acts a bit like pleurodesis - the scarring from the irritation ultimately leads to a reduction in fluid. (One other thing to watch for... when mine stopped draining suddenly there was concern that it might be blocked as there were still pockets of fluid in my lung. The surgeon used a syringe and some saline to see if he could push fluid through. BAD IDEA. It caused an infection and I ended up on the bathroom floor that night with a fever and barely able to function. Oops!) I still have loculated fluid in my right lung four years out but it doesn't cause me any discomfort. I do suspect it makes me more susceptible to respiratory illnesses like pneumonia.

I hope you manage to get this to a point when it's a bit easier on you. I remember what it was like to be gasping to breath just walking 100 yards and that was with only one lung filled with fluid. It was brutal. I can't imagine how anyone manages if both lungs are full! Take care! Pat

Aug 13, 2021 06:23AM Karenfizedbo15 wrote:

Good advice from Pat/Sadie. Slow is much better - I had a chest drain in earlier in the year and they drained off 3.5 litres. But I could only manage max 400ml at a time before massive coughing fit. So I overruled the boss who wanted 500ml at a time and told the nurses that’s all I could tolerate. Sometimes you just have to stand your ground - it’s your body and you know best how it copes.

Aug 14, 2021 11:47AM Bestbird wrote:

I'm sorry to hear so many are experiencing pain with draining using the PleurX catheter. I drained the fluid at home, and controlled the velocity by gently pinching the catheter tube to slow it to a more comfortable level. I don't remember draining until completely dry - just when the fluid was nearly gone. When systemic therapy begins to work, draining is no longer needed.

In case it may help, below from my book, "The Insider's Guide to Metastatic Breast cancer" which is also available as a complimentary .pdf, is a list of drainage options. For information about approved treatments by subtype, contending with side effects, cutting edge research and more, please visit https://www.insidersguidembc.com

Pleural effusion, which may accompany lung metastasis, is a buildup of fluid between the layers of tissue that line the lungs and chest cavity. Often the fluid contains cancer cells. Pathology testing should whether the pleural effusion is "exudative" (the fluid has excess protein, blood, or evidence of inflammation or infection) or "transudative" (characterized by a low cell and protein content), based on the chemistry of the fluid. If the fluid transudative it's very unlikely to be malignant, and if it's exudative, malignancy is still a possibility even if malignant cells don't show up when the fluid is tested, so re-testing should be done as warranted, along with any other recommended tests. If the effusion turns out to have malignant cells, testing should be done for ER, PR, and HER2 receptivity, since it is possible that the cancer cells in the effusion may have a different profile than metastasis elsewhere in the body.

For patients who have pleural effusion, there are three methods of draining the fluid to provide relief:

Indwelling (Pleurx or Aspira) Catheter: This is the surgical insertion, under general anesthesia, of a small tube placed temporarily into the pleural space that allows the patient or his/her family member to drain the fluid into a bottle as needed. Patients with an indwelling catheter are fully mobile and are not "attached" to the draining bottle except when draining the fluid. Once there is no more drainage at all, the catheter is removed either in the doctor's office or an outpatient procedure. Overall, indwelling catheters seem to help prevent the fluid from building up again, provided that the patient's systemic treatment is working. The Pleurx catheter works via suction, and the newer gentler model is the Aspira catheter, which is a bit less uncomfortable because uses gravity instead of suction for draining.

Pleurodesis (sometimes referred to as a "talc procedure") is a process in which substances, such as talc, are used to try to get the edge of the lung to stick to the chest wall to decrease the chance of the fluid returning. Although this procedure seems to help prevent the fluid from building up again (provided that systemic treatment is working) it can be painful and usually requires a brief hospital stay. Some patients have reported discomfort months and even years after the procedure. In rare cases, the procedure may fail altogether, rendering it impossible to drain the fluid thereafter because it becomes trapped in a honeycomb of many small pockets (called "loculations"). Of all options for draining malignant pleural effusion, this appears to be the most risk-prone.

Thoracentesis (sometimes referred to as "tapping") is an outpatient procedure that involves placing one needle per required side into the pleural space. Although local anesthesia is administered, this procedure can be uncomfortable and may cause scarring if repeated over time. The procedure also does not hinder fluid buildup again. These tips may make the procedure less uncomfortable: 1) Request a numbing agent before the needle is inserted to feel more comfortable after the procedure. 2) Request that the fluid to be withdrawn slowly in order to avoid low blood pressure or a "fainting" feeling afterwards. 3) Lean forward with a soft pillow supporting your head and upper torso while the draining is underway via your back.

Warning: If a patient is experiencing shortness of breath but the doctor cannot find anything in the lungs that is causing it, the patient should be checked carefully for blood clots as well as for cardiac issues. Either of these issues may cause symptoms that appear to be lung related problems, when in fact they are not. Additionally, a condition called "pneumonitis" (inflammation of the lung), can cause shortness of breath and coughing. Since pneumonitis can be caused by cancer treatments such as chemotherapy and radiation, MBC patients may be particularly susceptible.

Sep 2, 2021 02:30PM figtree wrote:

novagirl, I had a lobectomy of my right middle lobe at the beginning of my stage 4 diagnosis. At the time I only had a single nodule in my lung and a single hilar node so MO wanted to be aggressive to remove all mets at the time, thus a lobectomy. Your situation sounds different, so I’m not sure when you say a resection, are you thinking a wedge resection or a resection of a lobe? Either surgery is done by a thoracic surgeon. RFA is done by interventional radiologist (IR). Lobectomy is a major major surgery you’ll need at least 4 weeks most likely more time to recover. Wedge resection is easier but it depends on how big the area is. If SBRT is an option, it would be my first choice bc it has least collateral damages. It’s done by a radiation oncologist (RO).Please keep us posted if/when you can about what you choose to do. I’m rooting for you!

Sep 2, 2021 06:23PM Novagirl wrote:

You ladies are the best! This site has the most helpful people.

Figtree, I was thinking about wedge resection or VATS. I did research lobectomy, it is MAJOR surgery. I would do it if they thought it would knock out this LC. Do you regret having it done? That’s great your MO wanted to be aggressive. I didn’t know a thoracic surgeon performed these.

I had SBRT at Hopkins in February this year. They have one machine...I felt like I was pleading my case to have L2 zapped. I was able to get it because when I had radiation right after MBC diagnosis initially-they inadvertently radiated my bowels to get to my lumbar spine. I was so messed up with dehydration and diarrhea for 6 weeks. My bowels have all sorts of issues now because of it...verzenio constipated me so badly it was inducing vomiting. I was thinking I’d have diarrhea like everyone else.

I like your idea of doing SBRT. If Hopkins doesn’t agree I can go somewhere else. I am worried about time. I see my MO tomorrow, I will discuss all of these options with him.

Dee, thank you for the big hugs. I gladly received them. I was coasting along on Ibrance then thought I had finally settled into verzenio and this blind sided me. It’s so rare and it’s hard to find people that have had it.

I read the same case report on the eribulin.

Thank you both! I’ll keep you posted on what MO says and what we do moving forward.

Sep 12, 2021 10:17PM Sadiesservant wrote:

Susan,

I’m so sorry to hear about your pain. I had no idea you were going through this. Unfortunately I have no suggestions. I recall the pain from them over draining my lung like it was yesterday and can only imagine how hard it is for you to cope with. Sending virtual hugs.

Sep 13, 2021 06:54AM Tina2 wrote:

Susan,

Intractable pain is a horror. I join you in wishing for Wednesday's speedy arrival.

By your side,

Tina

Sep 13, 2021 09:51AM KarPC wrote:

Oh Susan, it sounds horrible and I am so sorry you are going thru this. I don't have any knowledge to share but I am thinking of you and sending you an air hug.

Sep 14, 2021 08:19PM SusaninSF wrote:

You are all so wonderful and kind to get back to me with comforting words. I am so grateful to be on this board. I had one friend in my support group who was dealing with a Pleurx but she invoked her right to die last week. She was only 32 and such a kind and strong woman. Her death has made all of this harder to take.

I will ask about a nerve block if the pain doesn't subside after the Pleurx removal. Great idea. How long does it last? I spoke to my Palliative Care doctor today but he didn't mention a nerve block. He did clarify that I need to take Gabapentin regularly but can take Oxycodone as needed. No one explained any of this to me when I was prescribed the drugs. Spent most of today at the Cancer Acute Center at UCSF getting tests and a brain MRI done. Last Friday my Neutrophils (usually around 1.5. Went up to 8.35) and WBC (usually low around 2.9. Went up to 9.2) jumped so I was worried I had some kind of infection. I also have a droopy right eye. They were really worried about the droopy eye but I was thinking it just needed a warm compress. Brain MRI looked great so they are less worried about that.

Tomorrow is already Wednesday so I'm very hopeful but at the same time worried about being disappointed.

figtree, The pain of removing a lobe has to be many magnitudes worse than what I'm experiencing. So glad the nerve blockers helped.

Big hugs and love, Susan

Sep 27, 2021 09:07AM Sadiesservant wrote:

Wow GR4C1E. That would really make me lose my #%&%. While I understand these things happen, it's worrisome as there are some considerations regarding timing and sequencing of treatments. As an example, I just had a discussion with my MO on Friday about which drug to move to and he has me on Navelbine. I think his preference would have been Halaven but he said we can do Navelbine then Halaven but not the other way around. Not really clear why...

I would suggest you ask them if this will in any way negatively impact access to any drugs going forward. If not, it's likely okay but I would want to be sure first. Sorry you are having to face this.

Sep 27, 2021 09:55AM Sadiesservant wrote:

Sorry. I don't think I was particularly helpful! You're right, there are other taxanes. I started out on Taxol which was very tolerable. Sending hugs...