mets to lung
Comments
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Euro, it is so good to hear from you! I love to read too, so I can relate to the reading binges. Hopefully xeloda can do its job for you so you don't have to do chemos that could be harsh on your body. How is the draining coming along? I know you had a catheter installed? How do you know when to drain? Do you just rely on the SOB? When do you know when to stop? Just curious.
Hugs,
Brenda0 -
okay, leaf rakers. This is what my oncologist told me yesterday after I was complaining about sob after raking just an hour. NO leaf raking. NONE! There is mold in the leaves and those of us with compromised lungs can easily get an infection in our lungs from breathing in mold spores .... And that could be fatal. I asked about wearing a mask and he still emphatically said NO. NADA!! Please heed that advice. We need to take care of ourselves. And yes, I always loved raking leaves. I will never ever do it again! Working too hard to live and don't want some pesky little mold spore doing me in! Oncologist had lost a male patient with Lung cancer that way!0 -
Glenna - Thanks for the heads up about leaf raking. I always have a hard time with mold this time of year, so I haven't done any raking.
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I went to see my onc today and got a much better report than last time. My lungs were clear. I knew that I hadn't had to use an inhaler or cough syrup, etc. for the last month. I told him that I think the Arimidex is taking care of the lung mets and he agreed with me.
I am just happy for the good news today. I don't know how long this will work but so thankful that it's working now!
I think I've mentioned earlier that I'm on a combo of Faslodex and Arimidex since I had to go off Xeloda.
I also told my onc about this site and he wanted to know if it's helping me and I told him yes! Has anyone heard from Rangermom? She was expecting a new grandbaby but I don't think she's posted anything in over a month.
Have a great night's rest!!
Judy0 -
Glenna, thank you for the info. on leaf raking. I have never raked leaves before, but thanks!
Judy, thank you for the excellent news! May your lungs be clear forever!
~Brenda0 -
RE: the SOB issues: on page 5 of this thread, Justagirl posted some great breathing exercises that will help with this problem, if you want to go back and take a look. Helps improve lung capacity and lowers stress. Always helpful!
Glenna - good information on the leaf raking - not that I've been much of a help to DH with this for the past 2 years. Can't say I miss it, but I do feel kind of bad leaving it all to him. We have tons of leaves. We did lower our expectations, and usually don't rake much in the fall anymore. He waits till spring now. Lets them lie all winter and lots of them blow away or break down, and it's a much easier job. As long as he gets them up early in the spring, it doesn't kill the grass. Besides, the oak leaves hang onto the tree long past fall raking season anyway, so doing it in the spring gets these late fallers.0 -
Glenna, I have a lot of leaves in my yard but I won't be raking them!!! I like to paint outdoor furniture but my daughter said no to anything like that that I used to do!! No more!! I can deal w that life change quite well! Glenna, that was great information you shared! Thanks a lot!
Brenda, thanks so much for the congrats! I like keeping up w you and the others! I love the support!! It really helps!!
My marker is considered stable on the combo drugs--it was 142 last month and 143 this month! It has been much lower but I can accept this! Onc was happy that the drugs are keeping it stable! It's especially good new since I had to be taken off the wonderful drug Xeloda! I really would have liked to have stayed on it but too risky for me!
I found Rangermom last night and she had posted a pic of her and her new grandson! I had just missed it!! Isn't it wonderful that she has a brand-new baby to treasure???
Have a great day!!!
Judy0 -
Chanah that is so wierd, I had just been thinking exactly the same about the chemo virgin/chemo slut thing!!
Am now waiting to hear when the skydive will be - weather has been foul, and he needs 2 bookings for the flight, so I'm waiting for the phone call!!
Started Xeloda on Wednesday, so no real se yet. Am on a low dose this week, then if I tolerate it we'll double the dose next week, and go up to full strength in the 2nd cycle. Have had some nausea and tummy ache, but nothing hectic.
Had a good chat with my onc on Tuesday. I wanted reassurance that we're hitting these pesky nodules, that keep growing, and new ones keep appearing. And he explained to me that he wants to balance chemo and its se and my quality of life. I'm still feeling well and am asymptomatic, so by using a single agent chemo the se's are less, therefore my qol is better. So I understand that better now. What's the point of knocking me off my feet with hectic chemo and spoiling my good qol that I have now, because that qol won't last. But he's hoping the Xeloda will at least stop the progression, or keep the growth slow, even if it doesn't get the nodules to shrink/disappear.
Hope everyone has a good weekend, with easy breathing and lots to smile at!0 -
Great news, Judy about the clear lungs - you go girl!!0 -
Thanks so much, Carolben!! I think it's important to enjoy QOL as long as we can! My mother and daughter saw me on the couch for two weeks on Xeloda and they didn't think I would ever get up! If I take it again my onc will have to give me a lower dose! My body can't take it for two weeks even though it was working on the tumors! I'll take my life right now for as long as I can! I'll be ready for less QOL when I have to though; not that I welcome it but that seems to be the way we have to fight, at times, right???
I hope everyone is having a great and blessed day!! I watched the JFK 50th Anniversary today and just had to have a good cry!! I was 15 years old and in Spanish class when we heard the news! My teacher was pregnant and at the news, she fainted! What a horrible memory!!! What a great leader he was though!! I'll never forget his famous quotes in his inaugural speech!!
Judy0 -
Hi.
I could sure use some advice, help, guidance. I was diagnosed with breast cancer three years ago. I had a complete mastectomy and reconstruction. I have had pneumonia twice in the last three months with bleeding coughs. This last bout (I still have it), the coughing up of blood increased significantly, to the point I was only coughing up blood. Long story short, yesterday I was diagnosed with breast cancer that had metastasized to my lungs, with two separate tumors. One is 6 centimeters; I don't remember the size of the other. The pneumonia is wrapped around one of them. I go for a PET Scan on Wednesday and a needle biopsy next Monday. I know this is not good, obviously, and I know this is Stage IV. I'm pretty scared.
I hope I'm not intruding on this board. You just seem like the right people to come to.
Thank you for anything!
Sara0 -
Sara,
They can do so much now for lung mets! I had a tumor in the lining of my pleural cavity and it got so bad that I coughed almost all the time. I had to have the fluid drained off the left lung; I would do it again if I had to. It wasn't too bad at all! Just one of those things we have to deal with while on this journey!!
This site has helped me a whole lot. Hearing from others w the same thing makes me feel better; the support helps deal with everything!!
When I went to my onc on Thursday, he was happy that my lungs were seemingly in good shape! I attribute it to lots of prayers going up for me and the drug (one of two) Arimidex!! I don't know what the treatment plan will be for you but just know there's always hope!!! Get you a book about Hope if you don't already have one!!
Good luck to you and keep us posted!!!
Judy0 -
Sara,
I'm 5 1/2 years stage IV, mets to lung! Don't panic. Get your testing done and your oncologist will get a treatment plan in place for you. I was started on hormonal treatments and did that for a couple of years before having to start chemo. I have pretty good quality of life though I do have shortness of breath and am not as active as i used to be. BUT, i am here and plan to stay a while!! You came to the perfect place. Come often. You will learn a lot and meet lots of great people. Let us know what you find when you get your test results and meet with your doc. We'll be here for you!!0 -
So sorry to hear this Sara! But yes- lots of treatment options out there, and you will feel better once your treatment plan is in place. Lots can be done for those lung mets. I'm with Glenna. My quality of life is good, though I do have shortness of breath with not much exertion. I don't have much coughing. I'm still working full time and still have a kid to finish raising, so I don't plan on going anywhere too soon. Hang in there. Hope your doctor gets you some relief from the pneumonia and bloody cough! Know that we're here with you, and please keep us updated!0 -
Sara: Wanted to give you a warm welcome. Sorry you have to deal with lung mets too. Once your plan is in place and treatment begins, you will feel better. It is frightening to learn you have mets. You must be tired from all that coughing too. Ask anything you are wondering about and we'll try our best to help you along. Jean0 -
You all are so wonderful! I can't tell you what a relief it is to hear from people who are dealing with this and surviving. You've all made me feel so welcome and given me such relief. I will post results from my tests when I have them. Really, you can't believe how much better I feel after hearing from you all.
Thank you!
Sara0 -
Sara, you are not intruding! Please keep posting and let us know how you are doing.
I was diagnosed with lung mets in September. On November 4 I was told that all my tumors were "vaporized"! That was my onc's term. So it is possible to get better, even with lung mets! Hang in there!
Hugs,
Brenda0 -
Welcome Sara, I remember when they told me I had mets in my lungs I went into a very dark place for a while. I felt like I'd been given a death sentence and hope flew right out the window. I think that's all quite normal, and I didn't stay there for more than a week, I'm like Glenna and Surfdreams, no symptoms except sob on exertion, not much coughing, feeling ok.
I realised it's not a death sentence and that there is always hope. I've had good qol on the whole, and they try and balance the treatment and qol, so I'm trying to just enjoy each day as it comes. It's been a journey to get here though, and all you wonderful women here have helped me so much!!
We have a group here in town, called I'm a Survivor, and it's for anyone who has cancer. We meet once every couple of months, and it's nice, but I'm the only stage iv there, and it's really here that I found women who are going through the same things that I am. You guys put my feelings into words and give me so much hope! I'm so grateful for this site.
Finishing my first week on Xeloda today, am on a low dose and it's been easy, the dose doubles tomorrow, and I say bring it on, lets zap all those bloody nodules that keep growing and keep appearing!0 -
Hi Ladies,
Well this is my first time on this board as well. From what I have just read you gals are awesome and I am so glad I found this board. I was on another but then found out recently I have cancer on the lung so my focused has changed and didn't feel comfortable on the other board. So a little about me: Dx in Sept of TNBC and had a CT scan but the current Onc and surgeon didn't do anything regarding the nodules that showed up. They both said focus on the breast did an MRI no other tumors so we did surgery. I then wanted another opinion because something in my gut just didn't seem right. So I went to Seattle Cancer Care Alliance (SCCA) and they said I needed a PET scan. So they sent me to a facility nearer to my home in Olympia and it found those nodules were in fact TNBC as well. So that Onc sent me back to SCCA and I have been working with them since. I am so glad actually even though it is a 2 hour drive, it is the best place to be. They work with Fred Hutchison, Children's Hospital and University of Wash. I love the team I have working with me and I am currently starting on a Case Study trial and my first treatment was yesterday. It is using Abraxane (chemo weekly) and Avastin (targeted therapy bi-weekly) for 24 weeks. There is another targeted therapy called Erlotinib that is a pill but won't be started until after the 24 weeks. Depending on the results of this plan Avastin may be used after the 24 weeks as well.
I know the TN makes a big difference as it is a very aggressive cancer.
So just looking for any input and also hoping to find a home on a new board. Thanks in advance for your thoughts.0 -
Rozann, when my shortness of breath worsened and they couldn't attribute it to the lung mets they just said it must just be the cancer "progressing." After me pressing them enough because that's not a good enough answer for me, they finally told me it was lymphngitic spread. That means the cancer is no longer inside the mets but has gone into both the lungs' lymph systems and there is literally no treatment that will help. Hence, I'm in hospice. So if you don't like their answers, keep pushing. It may be they just don't want to tell you or don't think you can handle the truth or whatever.
Teri0 -
SpiritBlessing, welcome to this group of lung metsters! I think Carolben had TNBC. My first dx. was TNBC as well. Sounds like you are getting the right care now because you are going with what feels rights. Keep going with your gut and asking questions. That's the only way to get answers.
Teri: Does being in hospice mean no more treatments? How are you doing? I have a friend who has been in hospice with brain mets for more than 18 months.
Hugs,
Brenda0 -
Well Thanksgiving is over and it went well for me for the first week of Abraxane and Avastin. Anyone else on this combo? How about anyone familiar with the Phase II case study 6628a? Would like to find who else may be on this study or more folks who have used either of these chemo drugs.
I had a really good first week as the only SE I experienced were a very slight headache and metallic taste in my mouth. These both started within 15 min after starting my treatment. I was told by my nurse a couple of days later that the headache was from the Zofran not the treatment. I was also informed that there is not a lot of nausea with these two but I didn't want to take any chances. It has been 4 days and the headaches and bad taste are pretty much gone. The headache was so mild and very fleeting that it wasn't really worthy of even taking Tylenol for it. I drank lots of water and tea which I do anyway so this part is easy.
I haven't really felt the fatigue that they told me about. I did yesterday but I think I was just tired from helping my daughter cook most the early part of the day. She gave me some lessons on how to use a food processor. She is actually taking the charge of my nutrition program and is coming every Friday to precook meals for the week for us. It is all organic, whole and I have learned a whole different way to eat and cook. She pretty much eats this way everyday for the past 5 years so she is amazing.
I have eliminated all sugar and flour and very limited meat. I am getting my protein from beans, lentil, quinoa, nut butters and nuts.
Has anyone else changed their diet to aid in providing more healthier options to help fight cancer along with giving more nutrients to boost your immune system?
Hope everyone had a great Thanksgiving...blessings!
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hi Spirit Blessing, I'm also 3-, haven't been on your combo, so can't help you there, sure you will find someone here who has, tho. Good luck - I hope it does the trick!
Well, I finally did it - went skydiving on Thursday! What a totally awesome experience, it was a tandem jump and we jumped from 10,000ft, I did have a moment just before we jumped, but as soon as we hit the air, it was amazing. Have no words. Was having a bad day, feeling nauseous, tired, shaky and sorry for myself. I jumped that afternoon and felt like a million bucks after! Big dose of endorphins will do that!
I have a juicer, Spirit Blessings, and only use it intermittently. I'm a bad eater at the best of times, so try to just keep eating whatever my body tells me. I get a craving for red meat every now & then, then I eat that, & I'm not much of a red meat eater. Otherwise I've always preferred lots of fruit and veg, fish, not much of a fried food fan. I don't eat junk, but chocolate & ice cream and the odd piece of carrot cake can't be considered as junk! Stirfrys are also good. I get lazy to cook and my appetite is not good, so I ask friends to make me the odd home cooked meal - it always tastes better when someone else cooks, somehow. I do admire you eating an organic, whole and healthy way!
We don't do thanksgiving down here, but I love the concept, and am thankful for feeling as 'well' as I do, being able to still swim in the sea and do yoga, and skydive, to still have pretty decent quality of life. I'm also very thankful to family and friends and all their support, and VERY grateful to all the amazing women on these boards, who, without knowing it, have helped me so much!!0 -
Carolben: What a thrill that must have been to parachute! It's nice you did something you always wanted to.
Spiritblessing: Welcome to the thread. I am on Abraxane (3 weeks on, 1 week off), and Xgeva (monthly). The Abraxane has done the most for me so far. I've had 33 infusions which makes 11 cycles. This week coming up is my week off, so I'll start my 12th cycle the week after. I don't get much as far as nausea goes, but I can get foot cramps if I don't keep well hydrated. Neuropathy is another issue I have, but had neuropathy from previous chemo drugs too. Fatigue is part of my routine, but I nap when I'm tired. I have not changed my diet with the exception of given up milk. I have a small amount of milk in my coffee but that's eat and I go real easy on cheese. Milk can add to congestion, so it was to help my lungs. I hope your regimen goes well for you.
I hope you all enjoyed Thanksgiving and have a good weekend.
Jean0 -
Teri,
I also have lymphangetic spread of mets to lungs. I am TNBC. I have never been told there was no treatment available because of the way the cancer spread. It has been almost 7 months for me. I first was on carboplatin/gemzar - it only worked for about 3 months. I have been on xeloda now for almost 2 months. My tumor markers are down and my shortness of breath has decreased dramatically. I'm still working a full time job and have good quality of life. Unless there's something else going on, I would ask your oncologist about trying other treatments. I also have mets in spine and may have a spot on my liver (was too small to tell - at my next scan if it's gone, they'll know it was a met.)
Carolben - congrats on the skydive!!!0 -
Welcome Spirit Blessing. I got a good 15 month run out of Abraxane before I had progression. Most of the side effects I had were in the first 6 months. The side effects actually lessened over time. None of the side effects were bad though and I'm still working full time. I've not had any of the other medications you mentioned, so can't speak for that.
Carolben! What a rush! You're so brave. I used to think I wanted to skydive, but that urge has passed. Kudos to you though! A friend has mentioned wanting to go up in a glider, and I was thinking I wouldn't be brave enough to do that either, but now you've got me thinking about it. It would be an awesome adventure! You're my hero, girl! ;-)0 -
Carolben, awesome! So glad you had such a wonderful experience. You are far braver than I!
Welcome, spirit blessing. How loved you are to have a daughter who will prepare such healthy meals for you!
My thanksgiving was spent at the hospital with my husband who had a quadruple bypass on Wednesday. All went well and he is home now, resting peacefully after getting no rest in the hospital. Much to be thankful for.0 -
Oh my! The hospital is not a fun place to spend Thanksgiving, but think how much better next year's Thanksgiving will be in comparison. I'm glad he's getting along well!0 -
Glenna, you and your husband must be so relieved. Recovery time for him will be long, but you will be there with him. Are you healthy enough to take care of his needs?
Love,
Brenda0 -
I posted to Hormone therapy forum and was told to do this again in Stage IV forum. I am keeping myself sane while waiting for a path by art, walking, alkaline diet and prozac. Would love to hear from you all with lung mets.
Well I have been on Femara for 8 months and my cancer has returned. I never had surgery and responded the first time really well to Taxotere infusion and Xeloda combo. My latest symptom is a swelling and tenderness (I swear there is pain with cancer) on my Left breast which now after a week of identifying has become a lump (not at site of original (no surgery) tumor). I discontinued the Femora and my hip and joint pain is disappearing. I still have mid back pain and difficulty breathing- metz to lungs and last week they took out 490 cc of fluid (which had developed over a 5 week period) from my left lung with thorocentesis. I am encouraged to note all the different medications that have been used to keep us all alive over the years and hope I am a candidate for a clinical trial in the Bay area- if not I kept the port in for 8 months (with monthly heparin flush) for a reason. Trying to stay positive but the choices assault the senses until I have a path. Anyone got some advice?0
