mets to lung
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Saw MO Friday. PleurX working for me, but nothing else. Referred to hospice. Best wishes to all & I hope you get long results from your treatments.
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Nopink. I am sorry to hear this. Prayer for a miracle
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Nopkin I am also very sorry to hear this. Sending you strength and hugs.
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@nopink2019 Oh no, I'm so devastated for you. If the pleurex is working, then you are breathing better? Is the advancement due to progression in the lungs and or liver?? Have they really exhausted all lines of treatment or is this your decision? You were so kind when I first posted, my heart is broken for you and your family.
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My liver seems to be the biggest issue now. MO said further treatments would be as difficult as stopping and recommended not going through those pains as she saw very little upside Still draining pleurx every other day and it definitely helps breathing.
Thanks to all for your kind thoughts and prayers. Best wishes for your treatments
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Nopink, I have no words except to say, I'm so very sorry. I pray that your team will be able to keep you comfortable. Sending you love and gentle hugs.
Carol
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Hello, I am new to the thread. I have had a newly discovered nodule in my right lower lobe and what appears to be "interlobular septal thickening and subtle nodularity with fissures and new small pleural effusions" which appears to be "lymphangitic spread" of my tumor. I'm not sure what all that means as I have not talked to my MO yet since the scan. I understand it to be a progression from my previously stable bone only mets which is scary right now.
At this point I have more questions than answers but have been reading through this thread to learn from you all who have been through similar diagnoses. The nodule is 8mm which I understand to be fairly small. I don't understand what significance "subtle nodularity" means. Are there more growing? Anyway, that's my story. Thank you for the information you all have shared here. I am finding it encouraging to see that this may be manageable for a while to come.
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emac877. Sorry you have had to come searching on this site. It looks like you have been battling this horrible disease for a while. I am not sure how much help I can be. My mets in the lung area are my only site right now. My last scan which was right after my diagnosis suggested lymphangitic spread but I had a large pleural effusion so they could not confirm it 100%. I had not been on treatment since 2017 so I am on my first line. I have a nodule in my right lung which is described as non cancerous but in the last two years it has grown from 8mm to 14mm. Right now they are only just watching it. They may want to remove the fluid from your lung to biopsy it. Depends how much is there.
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Brutersmom- Thank you. I just spoke to my MO a little while ago and he wants to meet with me Tuesday. He agrees it does look like lymphangitic spread and gave me a rough prognosis of a couple of months to a year. I will be switched to Piquray and stay on the faslodex. I am reeling a little right now but I guess I'll find more out Tuesday in terms of whether they will biopsy the fluid or not. My report read that the pleural effusions were small so there may not be enough to sample.
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Oh, emac, that totally sucks! I hope your MO appointment on Tuesday gives you some hope and direction.
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That stinks eMac. You haven't been here that long. I thought there would be a bunch of treatments yet to try. Scarry to think it could be that stubborn and quick. I hope you will be comfortable
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emac877 I can understand why you are reeling. I was give the same prognosis in the ER when I was first diagnosed only I was told 3 months. I think it had to do with the size and location of my pleural effusion. I am 6 months out and doing well on my current meds. Pleural effusion has stopped. I have been known to tell people "I am past my expire by date". Even though my oncologist and my PCP told me that I had a good chance or 5 or more years it was hard to believe them at first. My first two thoracentesis were large about 1200 ml. They were pretty easy. My last one was 400ml which is borderline for a thoracentesis. That one was a bit uncomfortable during the procedure and for a couple of days afterward but not painful. I walked in and walked out. Drove both ways. I hope they can figure out the right meds that will slow everything down and give you some hope. I hope they can get something to biopsy and see what medications would be best. I would also want a second opinion. I opted not to this time because my doc has a very impressive back ground. If I had one of the other ones who were there in 2015, I would have been heading for as second opinion in January when I was told 3 months.
Whatever you do don't google it. It will just make you feel worse. I found one article dated 2022 that offered hope.
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Thank you all.
Brutersmom - thank you, that made me cry. You're right, Dr. Google sucks. I gave up on that pretty quick. I did run across an NIH document that stated that prognosis since 2018 has gotten better and patients are living longer. That helped.
I haven't given up hope yet. My MO is incredibly competent. He has an impressive resume. I'm a critical care nurse and it speaks volumes to me that the ICU docs and our medical director all think that he is brilliant. I trust his opinion. I worry that at the cancer clinic they have higher case loads than they can manage but at the same time, he called me on a Saturday morning. Who does that? This has come out of nowhere. Prior to this scan I had been stable with bone only mets for the last three years so I think it got us both by surprise. I just have to quiet my mind until Tuesday when I can ask more questions. I plan to go at this no holds barred at this point. I believe that I have a good chance of at least knocking it back and gaining a little more time.
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SondraF - I did see that and have it on my list of questions to ask my MO on Tuesday. I'm willing to try it.
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sondraf, That was an interesting article. I was fortunate in some respects that my pleural area and lymphatic area is the only metastatic site so far. Mine has been treated the same as if it were any other organ with good success with letrozole and Ibrance. It has been 6 months and I am back to full activity with no lung issues. It is good to know there are options if it should return in the lung after spreading to other areas. My doc is optimistic that I will do well for many years because of my response to treatment but as we all know cancer is so unpredictable.
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My doctor feels at this point that targeted therapy is the way to go. He has me scheduled to start Piqray but I'm navigating the insurance hurdles. It's been approved but I have a $10K/mo copay so I am applying for copay assistance through Novartis. I did make it very clear to him that I was willing to be aggressive with this. I am seeing a pulmonologist on Tuesday as I am struggling to keep my sats above 93% when I am up and around and still fairly short of breath.
Brutersmom - I am so glad to hear you are back to full activity with no lung issues! It's great your doc is so optimistic and I hear you about unpredictability. I felt completely caught off guard with my recent progression.
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Omg, eMac, what planet are you from. $10,000.00 a month copay for drugs. That is not insurance. That's a crime.
I'm glad doctor is not giving up! I sure something helps soon.
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Gailmary- I know! I was stunned. I'm hoping to hear something Monday or Tuesday.
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This is such a good point. When we read various articles that are heralding the great news of the latest highly effective breast cancer treatments coming out, they never seem to mention, “oh, by the way, don’t worry about your breasts, this treatment will just cost an arm and a leg!” And the commercials for various breast cancer medicines never seem to add: “Side effects may include financial hardship, including confusion about whether to pay your electric bill or your medical bill. In some case, financial ruin and bankruptcy may occur. Talk to your financial advisor to be sure. “
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I haven't posted here in a bit. I did get a copay card for the Piqray which will last for 3.5 months and then the pharmacy says they can renegotiate with Novartis. In that time it took to get started my LC got worse. I am now on 2L of O2 most of the time except for short breaks off. I ended up in the ER and so my MO has gone with a more aggressive approach and I am doing weekly Taxol for 12 weeks in addition to Piqray. Got a port and that is in and doing well and my first infusion of Taxol was Thursday. I have completed a week on the Piqray now and considering everything am doing okay. I have a little portable oxygen concentrator that has been my lifeline in all this. It feels like everything went from a standstill to a flood but maybe having to go to the ER was a wake up call.
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I am sorry to hear this. I hope the meds work and help with the breathing issues.
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emac, I am very sad to hear this, you’re one of the first person who responded to me when I was diagnosed with MBC, I really appreciated that. Take care.
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@emac877 I hate to hear that financial delays caused you such progression. Don't those people realize time is of the essence? That makes me so angry. It is good to know you are finally on treatment and doing well. Do you have scans coming up? Again I don't understand LC but did find information on a drug that has strong response for lung cancer. Don't know if it is or can be used in BC, but something to inquire from MO. I think that's why I like that my MO works with other types of cancers.
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Emac it really stinks that you got worse waiting on your insurance. Does this tell us to proceed with treatment anyway? Glad to hear Dr is taking an aggressive approach. I hope you will be improving soon.
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I feeling super frustrated tonight. A year ago the miniscus detached from my knee. I was scheduled to have knee replacement surgery in January 2023. Instead I was diagnosed with a breast cancer recurrence in the lung for my breast cancer 7.5 years early. Unfortunately the oncologist will not approve surgery and I am not sure the surgeon will even do it now. Last week I stumbled while walking and my knee got sore. It seemed tonget better but now I have a bakers cyst and my knee is swollen. It hurts to walk. On top of that my fridge stopped working and I had to move all the food out to the garage and put it in the fridge and freezer outside. I am just frustrated right now and not sure what my next step is with my knee. I already had a gell shot. It takes weeks to get an appointment with the orthopedic. I find out at the end of August how my cancer responding to treatment but because it is in the pleura and pulmonary lymphnodes it will take a lot to get approval for surgery at least for a while unless it is an emergency.
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Oh, brutersmom, how frustrating! I'd want to sit down and cry! Do you have anyone to help you move food from on fridge/freezer to the other? It would be enough of a job even if you weren't dealing with your knee.
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I got scan results yesterday and don’t know what to think. I don’t see my oncologist until next Friday. Liver lesions are shrinking. In my lungs some are shrinking but there appears to be a new one. Plus more opacity than last time, indicating inflammation. Mixed news! I wonder what my oncologist will say. Of course I’ve been dwelling on it
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Aj. I think the worst part after the scan is waiting to see what the doc wants to do. Especially when something new shows up.
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