mets to lung
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Brenda,
They did a CT scan in the hospital, and we plan to do another in a few weeks. The growth of the pleural effusions was the big thing on the latest scan, although yesterday they were both smaller (right side was drained, left wasn't.) Breathing isn't bad enough to qualify for oxygen at home, but bad enough that i just can't get myself moving....
Laura
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Laura,
I hope and pray that the root cause of your PE and SOB will be deciphered and addressed by a new treatment or regimen!!! I feel for anyone who has difficulty breathing. I have been there and I know how awful it is.
Gentle hugs,
Brenda
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Brenda, I've already been on gemzar. My onc didn't mention combining the carob with anything but I will ask him about it. Haven't had time for research yet! Thanks for all the kind thoughts everyone!!
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Laura, I'm not sure whether you may be interested in this... if your pleural effusion is malignant, perhaps
you might consider sending a sample off for chemo
sensitivity testing? The tumor or
malignant liquid would be tested against different chemos and combos to see
what it may be susceptible to, and what it may be resistant to. This is still considered controversial and
many doctors do not believe in it, and it may not be covered by insurance. However, several people have indicated that
it has helped them and that it was superior to the hit-or-miss approach to
chemo that is used today. If you are
interested, two viable places are Rational Therapeutics http://www.rationaltherapeutics.com/ and Weisenthal. http://weisenthalcancer.com/Home.html Dr.
Weisenthal has been doing this since the 1990s, so he has extensive experience.Also, if it is malignant and you haven't already done so, please have them re-test ER, PR and Her2, as sometimes the profile may change.
Wishing you the best!
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Bestbird - thanks for the suggestion. I'm having my lung met biopsy tested for genetic mutations at Sloan Kettering as part of a clinical trial there - I had just gone there a few days before ending up in the hospital. I hope to get some possible guidance on trials from that info. Also being tested for the androgen receptor - phase 2 trial at SK now.
Laura
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Bestbird,
I was interested in your suggestion to Laura. My pleural fluid was found to be malignant. Tests determined it was due to metastatic breast cancer (tumor in lining of left lung), but the fluid alone could not give information on er/pr/her2neu status. When my oncologist decided to biopsy my lung tumors, it was too late because they were all gone (I know, a good problem to have). Are you saying that hormone status of tumors could have been determined through the fluid?
Thanks.
Brenda
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Brenda -- I had a pleural effusion too, and they were able to determine the ER/PR/HER2 status from the cancer cells found in the fluid.
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I've been thinking of all you ladies on this thread. My SOB has returned, unfortunately! I can accomplish very little without having SOB. I try and keep going though as much as possible! Does anyone have any good tips for dealing w this SE?? I would appreciate hearing from you. I go to my onc around April 10th. I think he will change my treatment plan. Currently, I'm on the combo of Faslodex and Arimidex and my marker went up last month. I know I'm in good hands and I trust my onc!
I am going to enjoy the sunshine and 73 degrees today in NC! I have been keeping up w everyone on here even if I don't comment always! For the most part everyone is having good reports and I'm so thankful for them!! It gives me hope!
Take care all!!!
Judy
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Hi All,
Just had another thoracentesis today. SOB was getting worse so I called my onc. They removed another 650 ml of fluid. They will test it (this time I was at my cancer center.) So in less than a week I filled up again. Did CT scan to rule out pulmonary embolism (not), but also showed big increase in spots on liver. Looks like I'm moving on to Eribulin. Meet with onc again on Monday (didn't see him today.) Will probably start new chemo then. I feel a bit better breathing than I did this morning. Could barely get out of bed and dressed.
Laura
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Carolsue, thanks for the info. I will ask my onc. why we could not do the same thing with my malignant PE.
Laura, sorry about the breathing problems. I thought I was dying when I got hospitalized for PE in September! From experience I know that the PE will get better when the cancer gets better.
Hugs to everyone,
Brenda
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Hi Judy, I am so sorry that you are having so much shortness of breath. I was diagnosed with mets to the lung November 2013 and had a VATS procedure with talc to stabilize my R lung after drainage of an effusion and partial pleurectomy. The surgeon placed a Pleurx (sp?) catheter in the incisional area to assist in any drainage needed from the lung area. I healed quickly and the wall of the lung stabilized along the interior rib to hopefully eliminate the space for another effusion to "rent the space". I had the catheter in for about 2 weeks and home care nurse came to drain the catheter. It is not painful and other patients learn to release and drain such catheters with home setup. Perhaps a call to your oncologist re your increase in shortness of breath and to inquire about this would be helpful. I hope that you can get relief soon Judy. Hugs, Peggy
Dx IDC 2006 Stage 11 Grade 3 axillary node mets 3/22 ER+ PR+Her2neu+
TX lumpectomy L with axillary node dissection, Adriamycin, Cytoxin' Abraxane Herceptin, Arimid Dx Breast Cancer with mets to R lung. Nov. 2013. Faslodex, Herceptin.
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Naturelover, wish I could help you with ways to deal with the SOB. I've been dealing with it for so long and haven't found anything that really helps me. I get up and get dressed. I rest. I eat breakfast and clean up my mess, I rest. I pay the bills or do a load of laundry. I rest. Just the way my days go. I always look forward to my recliner time and catching up on a show I have on the dvr. My priorities for each day are to do at least one really fun thing and at least one household chore. Anything additional is lagniappe (a little bit extra). My fun thing usually involves seeing one of my grandchildren or having lunch or a glass of wine with a friend. If I'm not having fun, then what is the point of going through chemo? Anyway, wish I could be of more help. I tried riding my bike recently and had to stop and walk. Yikes! Guess I will stick to a slow walk! Hugs to all who are dealing with sob and other SE's from mets. Glenna
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Peggy and Glenna: Thanks so much for your words of encouragement!! Being on here helps so much! You all described exactly how I've been feeling. I can only do one or two things and then I kick back on the love seat in my family room. I love to watch Masterpiece Classics and I am a news junkie too!
My mother lives with me and insists that I rest when I lose my breath. I know she worries about me--that's nothing new--I always worry about her falling, etc. It's great that we can live together.
Well, I go back to my doctor in about two weeks and I am very curious as to what he will say about the SOB getting worse. I had a good checkup last visit but my CA 27-29 was a little higher than usual. It is what it is I guess. One thing I'm learning with this disease is to enjoy the moment, the day and not try to think to far ahead.
Keep me posted please. I read this at least every third day. I always hope and pray that every one is resting comfortably at night and during the day finding pleasures in the simple things--as Glenna said--spending time with a grandchild or having a glass of wine. I will add that as a Southerner, I really enjoy my glass of sweet iced tea w lemon in the spring and summer. I love being outdoors in the sunshine and watching the birds.
Goodnight and sleep well all!!
Judy
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Judy, what part of the south are you from? I grew up in Florida and love ice tea as well though without the lemon. I have to drink decaf after lunch, though, or I'd never get to sleep. We live on a cul de sac with woods behind us. My husband has bird feeders that he keeps well stocked and we have several bird houses. I love watching them. We even have one of those little ones with suction cups that attaches to the window. They love it! My grandson just put up one if those bird houses that attaches to a window. No one has come to nest yet but it will be fun to watch if they do! I have a picture that I took with several birds, a rabbit, a squirrel, and a chipmunk all sharing the stuff that falls on the ground around the feeders. We also get deer, foxes, and raccoons. Hard to believe there is so much wildlife around and we're located between Baltimore, Washington, and annapolis. I would like to get to sleep soon so guess I will have to take something. So many nights I have trouble getting to sleep ... Another SE of mets. Too many crazy thoughts running through my mind! So nice that you have your mother living with you!
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Laura & Judy, sorry to hear you're struggling with sob. I dont know if it will help, but when I get it I sit and try consciously to breathe in and out, thinking only of the breath, until I can regulate it again, but I don't have fluid on my lungs, so I don't know if that'll help. I kind of run out of breath sometimes in mid sentence and have to stop talking! I also read on another thread here a suggestion to breathe in as deep as you can and then cough the air out of the lungs? In yoga we do an exercise where you breathe in and then exhale in puffs, a little at a time, it's supposed to clear the lungs.
I absolutely agree about enjoying as much as we can. My fix is coffee (or tea) out with a friend. It gets me out of my house and moving. On those mornings when I get up, sit down and wonder where the energy will come from for the day, I know that if I just get myself up to town I can grab someone for a coffee or a chat or just visit my old workplace and say hello. I worry that if I stop doing stuff I'll not get going again! Getting to yoga is also a challenge, but once I'm there I love it. It's a great form of exercise and it kind of irons my whole body out. Also that calm after the class is beautiful. Also I just go into child's pose when tired and rest.
Glenna, it sounds like you live in a really beautiful area, so lovely to have the wildlife around! I spend as much time outdoors as I can - love the sun (tho it doesn't love me too much anymore), but every afternoon I hit my bed and have at least 1, often 2 hours of sleep. It doesn't make the fatigue better, but it's so nice. Then I can go to about 9.30pm before going to bed for the night. If I don't sleep in the afternoon I'm all done in by 6.30pm! Also if I get over tired I get all weepy and emotional and feel like I cant cope etc etc. And yes, it's exactly as you say - I make my bed; sit and rest, have a shower; rest, put cream on; rest, get dressed, rest - but chemo and the cancer will do that. It sucks tho. I do so envy you having your Mom with you - my Mom passed 4 years ago, and I would just love to have her around still, she was a wonderful woman. My Dad is still alive (94), but we don't have the same relationship - there's nothing like a Mom.
I also sit in my lazy boy and watch TV - I'm a big cricket and rugby fan, but I'll watch anything that makes me laugh, so I do watch some junk, but thank God for lazy boys and TV!! My attention span is short and I love to read, but it's taking me ages to get through a book these days.
I'm lucky that I sleep so well, I sometimes take a sleeping pill, but now that I'm not getting steroids I have no trouble sleeping in the afternoon and then all night too!! Some of the sleeping may be my escape too. so I need to watch that.
The house I've been renting has been sold, so I have 2 months to find a new place and move. I have 2 dogs and it's not always easy to find rentals where they allow dogs, but I'm sure the Universe has something out there which will be just right for us. Luckily I have good friends who will help me pack and move. I've been throwing out stuff and this is a good opportunity to get rid of a lot of junk.
My good news is that my latest scan shows I'm still stable (love that stable boy) and there has been no visible spread, so the Xeloda is doing the trick, and I'm so grateful. I'm pretty much asymptomatic, except for some sob, so as long as I can keep stable my qol should continue to be good. But I do feel like I'm waiting for the other shoe to drop, how long can this last? My onc thinks that we won't get any regression if we haven't had any till now on the current treatment, but I can live with stable! So I'll continue with the X for another 4 cycles and then scan again. I have numerous small nodules in both lungs and a couple of bigger ones - 11mm is the biggest though, and they are all contained in the lungs so far, not in the lining.
Majister, I agree with Brenda and Ronda about the work. I wish there was a way you could take time off. It's hard cos of finances, I understand that. I worked half days during my first chemo (AC) and felt like any energy I had went into my work and it was too much. I am very lucky in that my sisters urged me to stop working when I got the stage 4 dx, they and my Dad are helping me financially, which is a little hard to stomach (that I need to be financially supported), but I'm really grateful that I can do this. I miss my job (I did designing of embroidery and printing jobs on clothing), but I do feel so much less pressure. Also it was hard when I took time off, not fair on my employer. I do a bit of sewing from home or at a friends house, hope to make some things that I can sell. I totally identify with feeling done in by 08h30, it's nasty!
I'm up with my sister now, will be going home again on Thursday. I love to spend time with her family, she has 3 amazing daughters and 5 beautiful grandkids. They are so alive and smart and funny, but being away from home I find tiring, but wouldn't swop a week of not resting so much but having great times with family. My son has gone home to Israel, he left this morning and I hate saying goodbye to him, but we had a wonderful time together.
I celebrated my 60th birthday on Friday - so the good news from the scan was a wonderful birthday present. I've always said that if I make 60 it'll be a miracle (I was a pretty wild child up to my mid 20's) and that anything over 60 would be a bonus. So it was a big one, and being the princess I am, I was so totally spoiled!!
Hang in there everyone, lets try to find something each day to lift our spirits, each day is so precious. I so admire you all, such amazing women, I get so much inspiration here, thank you all.
hugs
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hugs to you, Carolben. Precious advice and experience-sharing. :-)
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I go for my PET scan tomorrow -- wish me luck! I've completed 4 rounds of TCH + Perjeta. The fact that I'm coughing much less and breathing much better tells me the chemo is working. I so hope the PET scan shows that to be true. Is it too much to hope for that the scan will show no sign of cancer anywhere after just 4 rounds?
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Carolsue: I hope your PET scan shows absolutely no cancer!! That would be the best news ever!!!
Judy
I'm going to try and get back on here tomorrow because I've missed a couple of days! Have a great night to all you wonderful ladies!!
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carol sue, hoping for great scan results! Sounds like the chemo is definitely helping you!
Carolben, thanks for your nice post. You are always so positive and helpful. It sounds like you have a great support system. Hope you are able to find a new place to live soon so you won't be stressed about it as the time gets closer to move.
Naturelover, hope today is a nice tea drinking day for you!
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Good luck with the scans, CarolSue! I see that you had TCH before, so I am guessing it worked well for you then so I hope it does the trick again, especially combined with Perjeta. Let us know when you hear the good news, and I'll count on good news! :-)
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Naturelover: I, too, have had the s.o.b. over the past few months from pleural effusion. I now have muscle wasting and weight loss which is dragging me down a bit. Had the thorancentesis but that caused a pneumothorax so they haven't drained fluid again. Onc wanted anothe chest x-ray Monday but I was too tired and asked if we could wait. Got my chemo and xgeva and came home. Like Glenna, I do everything with a rest in-between. Pages back on this thread, we were talking about techniques to help with s.o.b. I'll try to look back and find them for you.
Hope your scans are good carolsue! Hope all is fairing well and getting through as best you can. Hugs. Jean
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Carolben, belated happy birthday! What a big milestone for you! The stable boy is a great present, isn't it?
Carolsue, I have a feeling you will have good, if not great results!
Hugs to everyone,
Brenda
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Carolsue, Best of luck with your scans! I'm new and just had my lung biopsy on my 4cm lung tumor. So happy to hear you are feeling better because of the treatment.
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Thank you for all the good wishes. Now for the wait. Hopefully it will be short. I have my mid-cycle appointment and blood work with my oncologist tomorrow afternoon, and they hope to have the results then. I hope so too. I really don't want to have to wait through the weekend.
Susan -- welcome to the club. Sorry you're here. In January, I was so sick with coughing and difficulty breathing, I couldn't wait to get started with chemo. As rough as it was having chemo from an unhealthy starting point, the improvement I felt was pretty dramatic and immediate. I felt noticeably better after the very first round. So yes, chemo is your friend. Albeit a very abrasive friend with really bad manners.
Reading so many of your posts about the importance of enjoying life inspired me. I made reservations for our summer vacation this morning. After all we've been through lately, we deserve a really nice vacation, so by golly we're doing it! (On top of me going through chemo, my husband just had his hip replaced.) So in June, we're going to a Sanibel Island for a week! It'll be about 6 weeks after my last chemo, so I ought to feel pretty good by then. I can hardly wait!
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carol sue, I love sanibel island! One of my girlfriends moved there in high school and I was lucky enough to visit her there a few times. She's now a minister at one of the churches there. I know you will have a wonderful time. At the end of April my DH and I are meeting my sister, brother and their spouses for a week at cedar key, fl. Cedar key is on the west coast of Florida. It's very small but surrounded by water. We plan to sail, swim, eat, and relax. I am so lucky to have wonderful relationships with my brother and sister and enjoy spending time with them so much!
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Had my appointment this afternoon. Blood work was all good, but no results from the PET scan yet, darn it. Probably Monday. It's gonna be a looooong weekend.
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My Onc, Hope Rugo, called just now and said the lung biopsy was indeed breast cancer. Also, ER+ so kind of the best news we could hope for.
She said the plan was
1) Start on Tamoxifen right away
2) Come in early next week to have an injection to put me into menopause.
3) See a Radiation Oncologist about treating my brain mets
4) See an Ocular Oncologist about treating my eye mets
She said there are some good experimental drugs for my lungs but that I can't do them while they are radiating my brain or for a month afterwards. She's hoping the lung tumor will respond to the Tamoxifen.
Still waiting for the breast pathology but it's unlikely to have a lot of new information.
I assume you guys know what she's referring to when she said "promising new lung treatments". Can someone fill me in?
Thanks, Susan
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Carol Sue, Sending positive thoughts that your PET scan shows good results. I am new to this group mets to the lung dx December 2013....still trying to get a hold of all that goes with my new situation. Onc has me on Herceptin and Faslodex.....I am ok with the Herceptin but just wondered if anyone has some bouts of mild nausea with the Faslodex. This started after my 4th treatment a few days ago....the first three were very kind to me. What seems to help with the Fas yuckies? I also wish all the ladies here wonderful news with scan results.....you all are so helpful and deserve the best. Peggy
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carolsue: nothing is ever too big to hope for, that is what hope is for. I learned a long time ago, in my career, that if you don't ask for things, you will likely never revieve them. I've decided recently that that is the approach I'm going to take with "hoping" now. It's a new approach for me since my glass has been half empty since it was a baby bottle, but I am enjoying it so far. So I am hoping for you that your results aren't back yet because they show the most profound response the drs have ever seen and they are taking extra time to analyze it. :-)
I am recovering from having a lung wedge resection x 2 (same side) last week. Has anyone else had this or a similar thoracotomy? I'm experiencing the worst pain I have ever felt in my life. Would love to hear from someone else who has been through this. ie, what is "normal"? For myself, I am hoping big that it hasn't spread anywhere else and that it could be just as simple as removing the nodules to get to and remain NED. And also the slightly smaller hope that this pain goes away soon.
Best wishes to all
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I thought I would share my experience from last week with you ladies. I was diagnosed with mets to lungs, 5 nodules but only 2 lighting up on PET scan. On Friday I underwent "radiofrequency ablation" where they pretty much zapped the two malignant tumors with radio waves. We won't know for a couple of months and the next scan if they got them completely, but I am hopeful, and in a waiting pattern for the next couple of months, hoping that none of the other three have started to light up or any new ones have grown.
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