mets to lung
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Jean,
My thoughts are also with you. How are you feeling post procedure?
To all that answered to my question regarding PET scans, and imparticular Carpedem, thanks Soooooo much. Carpe, my situations sound a bit familiar to yours. 3 mammos showing nothing. Finally after a MRI they saw cancer in other breast so I am sure the scanning if my breasts/lungs is suspect (dense breast tissue). Anywho, MO has ordered a PET afterall along with another CT to compare to. Other breast comes off before RADs to check the 5 lumps in it (IBC in other breast incased in a fibroid - and I have several fibroids in other breast), and I am getting a biopsy if a suspicion lymp node in same a armpit. The lung nodule is new. I had a CT pre chemo and it was not there. I also had many subcentimeter nodes show up only chest wall. I can't seem to get a straight answer on their relative importance - sound familiar to anyone?
I am starting to feel like managing drs to be proactive is my new job. The pay sucks though.....
Thanks again ladies for your replies. Taking to others who have been there helps so much and makes you realize your not the only one having this experience.
My best to you all
JAB
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I haven't felt as good as I thought I would. I ended up with pneumothorax when the lung collapsed from the thorancentesis. I think I am breathing a big better but not as much as I thought I would. There's a lot of pain involved in the right lower lung field which I'm hoping clears soon as I am not liking the hydromorphone every four hours. Whenever I cough, It's a terrible pain. I go back on Monday for chemo and another chest x-ray so I'm hoping there's improvement showing on the x-ray. I hope everyone is doing alright. I've read that there are some of us going through some tough things right now and I hope we all recover and get on the mend. Much love. Jean
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Congrats Chanah!!!! That's wonderful... and such a relief for you.
Sending love and positive energy,
Karen
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Jean,
Oh no, your lung collapsed from the procedure? I hope that when you recover from this complication your breathing will be better. Sending you lots of love and hugs.
Brenda
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Jean, so sorry you had complications. Of course it would happen to you since you were so nervous about the procedure. I so hope the chest x-Ray shows improvement and your breathing gets better every day!! Hugs, glenna
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Jean - I've had a pneumothorax when my first port was
put in and it sucks! Hope you are breathing better by now and didn't
have to have a chest tube - they really hurt. Thinking of you!!0 -
Hello,
My name is maggie, Let me first say I am so happy to have been directed to this site by my onc and to have found you all. I was diagnosed with stage 3 Her2+ breast cancer in 2010 and in October of 2013 was diagnoses with Metastatic cancer in my lung and abdomen area.
I started chemo. (herceptin, Taxotere and Perjeta) I was supposed to have 8 rounds of treatment but after 4, my onc did a scan and decided only 6 were needed. I just had my 6th (and final) round on Monday. I had also been getting the Neulasta shot the day after the chemo and no longer need to get that. (so happy about that I want to have a party)
Because I am now stage 4 with the Mets. I now have to go in every 3 weeks indefinitely to get Herceptin and Perjeta. (Very happy not to need Taxotere anymore) I was wondering something and hope you can help me. I know every case is different and unless you are taking exactly what I took you may not be able to help me but thought I'd give it a shot.
I was told not to be in rooms of people (or on trains, buses etc) while getting the chemo due to my weakened immune system. My question is this. Is my immune system going to go back to normal or do I still need to be careful because I am still taking Herceptin and Perjeta? Now that the Taxotere (or chemo) is over, should I wait a certain amount of time and then resume my regular life? I know I just had my last chemo on Monday so I will wait at least the 3 weeks for the drugs to go through my system and to get through the side effects first but then what. I had tried to ask my onc this (in 2010) and she said everyone is different. If anyone has any feedback on this I would greatly appreciate it. I was very involved with my church and a few other groups and would like to resume that but don't want to put myself at risk with a weakened immune system. Thank you so much for your time and support.
Maggie
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Hi All,
I've been in the hospital for a few days with suspected pneumonia/increased pleural effusion. The small pleural effusions I've had are now moderate to severe. Have to have thoracentesis tomorrow morning. As long as that helps the breathing, they will send me home from the hospital. Not really looking forward to the procedure, but will be glad to be able to breathe better (I hope.) I think this also means the Ixempra isn't working. A few more nodules showed up in the CT scan they did.) Have to have another CT scan on Friday and meet with my oncologist to discuss next step. I had just gone for a second opinion/consult on clinical trials at Sloan Kettering last Friday. Dr. Traina there suggested Eribulin as the next step while I wait to see if I qualify for the androgen trial. I'm also doing a trial where they are doing genetic testing for possible chemo targets. I knew something was wrong when I was in NY, because each day my shortness of breath kept getting worse!
Laura
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Maggie -- I did TCH for 6 rounds in 2010, followed by a year of Herceptin, and I only worried about my immune system during the actual chemo phase. (TCH) Once I was on just Herceptin, I resumed my normal activities and didn't have a problem. I'm on TCH + Perjeta now for 6 rounds. Round 4 is tomorrow. My PET scan is scheduled for the 1st week of April, and I hope to hear that after I finish with the TCH I'll be going to Herceptin + Perjeta like you. Since I've been getting Neulasta shots since my first round of chemo, I haven't been quite as careful about avoiding crowds as I was in 2010. I attended my son's band concert, and I go to church when I feel up to it. My son even had a stomach bug last month, and I didn't catch it. Of course I let my husband do the cleaning up part. But when an 11-year-old doesn't feel good, he still needs mom for snuggles, and how can you say no to that? Once I'm done with chemo and just getting H+P, I plan to go back to my normal activities again. At least I assume Perjeta is similar to Herceptin in that respect. I'll ask one of the nurses about it when I go for chemo tomorrow and see if I can get a more definitive answer than the one you got. Congratulations on finishing your chemo! I hope you're back to feeling well real soon!
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Carolsue, I think it's wonderful that you have an 11-yr-old to snuggle with. My youngest son is 26 and I remember those days very well. I like to remember watching him play with his matchbox cars on the floor and all the other fun things he did. Enjoy these wonderful moments at every opportunity you can! I have four-year-old twin grandbabies!! They are so precious and I hope to live to see more grandchildren!!
I love reading all of the wonderful and positive comments on this thread!! So happy that it is active because I look forward to reading the comments!!
Take care all!!
Judy
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I have a question for you ladies. How soon after your mets to lungs diagnosis did you start chemo? I guess this is more for the TNBC folks, since we don't have the hormonal options? My onc has discovered 5 nodes, two of which have lit up on the PET scan. Only one is really growing, and we are going to treat that with radio-static ablation sp? the other she wants to take a "wait and see" approach, and says it could be months or years before she would want to start chemo, since I am otherwise asymptomatic. She says she can't give me more life, but can give me more time not having side effects. That does and doesn't make sense to me. Anyone advice?
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Aimmeemac,
I take it to mean that she or no one else for that matter can add to our time but she can help you with the quality of life!!
My therapist told me yesterday that it's not the quantity but quality of life. I had a lot of unhappy years in a bad marriage but once it was over and I kicked my husband out, I was happy for the first time in a very long time! My children were much happier--we actually looked forward to going and being at home!
That might not have any meaning for you and that's okay. I think we all have to consider what is most important and spend our days doing what we enjoy! From reading these posts, I think more and more of us are living well and for much longer which is a great thing!! I am so thankful for the meds that we now have! There's so much more available than when I was DX in 2005.
Love to all!!
Judy
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Judy, just the fact that it is 9+ years since your Stage IV diagnosis is amazingly wonderful! thank you for your comments.
Aimee
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AimeeMac, I was stage III C in 2005. They said they caught mine in the nick of time. I had less than a 50% chance to survive 5 years. It didn't come back until 2011 and then it was bone mets. In Sept, 2013 I had the lung mets.
I hope to see many, many more women survive this disease and, hopefully, our children and grandchildren won't ever have it!! I truly believe the scientists are very, very close to finding a cure. We all have to pray for that, anyway!!
I was almost 58 when I was diagnosed. I am so thankful that I've had so many wonderful days to enjoy my precious grands--Ava and Eli. Ava was a flower girl in a wedding in March and I was healthy enough to attend and didn't have a hacking cough during the ceremony.
My youngest son is getting married next May and I certainly want to be there to celebrate with him and his beautiful fiancé! Can't wait!
I will have to say this is my favorite thread yet! More people seem to respond on this one.
Take care all and have a good night's sleep!!
Judy
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Loveforlife Laura, I hope the thoracentesis went well and you're breathing easier now and are at home again? I'm sorry to hear you have new nodules, hope the ct scan goes well - let us know what it shows? Dammit, it never ends, big hugs x
Having my next scan next week Thursday, liver, abdomen and lungs this time. Have done 6 cycles of Xeloda and last scan showed stable (for the first time since they found the mets, they stopped growing), so I'm really hoping that it's still working! Scanxiety is starting to clutch my stomach!
My son is with me at the moment, visiting from Israel, where he lives. I just love him so much, he's so amazing, he's so patient and loving and communicates and we can laugh together and cry together. He's doing everything around the house, making me rest up, and we're doing fun stuff too! Yesterday we went paragliding !! It was really very very cool - so calm and serene and quiet up in the air. We did tandem glides over an area on the sea and surrounded by lakes, just so beautiful. And it was so easy, a couple of steps at lift off and a really easy, gentle landing. No exertion needed even!
Aimee,I'm also 3-, I started chemo almost immediately after they found my mets - did 6 months of Taxol. After 3 months I had some regression, but at the end of 6 months all my mets had grown again and there were new nodules in both lungs again too. But then I took a 3 month break from chemo, which was a bit nerve wracking but let my body recover a bit from the first AC chemo, rads and then the Taxol. My mets grew while I was off chemo, but not as fast as my onc thought. What is radio static ablation? Looked it up on Wikipedia but didn't understand it all.
I think I get the thing about quality rather than quantity. My onc explained it to me that he wants to get me on chemo that is not going to have too many harsh side effects, but will keep me stable (at the least), so that way I stay pretty much asymptomatic, dont get knocked on my butt from chemo and can still get out and enjoy life. I've had that with the Xeloda, and am so hoping to continue. There are side effects and some days I feel pretty crappy, but I have many more good days than bad ones.
My son is 38 now and he's still my little boy but instead of cuddles now we have lots of big hugs. Enjoy every day that comes along and love those you love well!!
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Carolben, I think I understand your onc's philosophy better than mine. I am really thinking about getting a second opinion, but am seeing the interventional radiologist this afternoon to better understand the ablation issue. From what I gather about the procedure, it is similar but a bit more invasive than a biopsy, but the needle/wire carries a current that pretty much fries the tumor. In terms of the chemo, it just seems to me that with millions of cancer cells now running free through my bloodstream chemo might kill off a lot of them and keep them from meandering to other organs. Plus, I think I tolerated chemo pretty well (Taxotere/cytoxan), and it sounds like there are fewer side effects with a singular chemo protocol. It's so great that you and your son have such a good relationship. I have two daughters, 23 and 29, and a son who turned 26 in January. He is moving back home at the end of the month more due to job loss, but has really been trying to help with things around the house as well as with keeping our spirits up. He keeps me from being too morbid. Typical scenario yesterday, in one of my low points I asked him if he would want to give my engagement ring to his girlfriend Hollie someday after I'm gone. He replied "shut the F up mom - you're not going anywhere soon."
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Carolben,
Hi, I just wanted to say good for you for enjoying life. The paragliding with your son sounds amazing. My onc. said to me, (with this whole treated but not cured thought) It is all about quality of life and it sounds like you are enjoying your life to the fullest.
Also, I am so happy you are enjoying some time with your son, I know it is important for me to be with the healthy, supportive people in my life as I go through these challenges. One of the most important people in my life is my 84 year old aunt Frankie, who lives in Ireland. I just found out she will be coming here to NJ to stay with us soon and is staying a whole month. I can't wait. Please keep up the good fight. I know you are going to make it. Stay strong.
Maggie
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AimeeMac - I too was just diagnosed with TN mets. At least for me, I wouldn't feel comfortable with a "wait and see" and would get a second opinion, at a big Cancer Center if possible. I am freaked out with the aggressive nature of TN and told my onc I wanted to start chemo ASAP. I am trying to wait to get into a clinical trial but told him that if it doesn't happen by next week, I want to start something else, so I understand your anxiety. Please post what the radiologist says as am interested what it does. You may also want to see if you are eligible for clinical trial around in your area before you start anything as there are a lot of them for mets that hasn't been treated yet.
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Laura,
Hope you are feeling better.
Brenda
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Dear Ladies:
I was diagnosed with Breast Cancer 4 years ago and have recently been diagnosed with breast cancer metastasized to the lungs. I have two tumors, one in each lobe of the right lung. I am taking letrozole right now. I am so impressed by all of your knowledge, even about your own diagnoses! I feel very ignorant and am not even sure what questions to ask.
I wanted to ask you all some questions, if you have time. First, have you all battled pneumonia? I am having my third round with it, and it seems to "wrap itself around" the tumors. I can't shake it. Second, I really struggle with the shortness of breath and extreme fatigue. I am the vice principal of a large high school, and some days I get to work and feel as if I am "spent" by 8:30 a.m. Do you all have that experience with your jobs?
I am so overwhelmed by all of this. I can't seem to get a grip on it, expect for where it is going. Any help or answers would be so appreciated.
Thank you!
Magister
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Magister,
I am a kindergarten teacher with 28 students. I could not go back to work after I was hospitalized for pleural effusion. The chemo (carboplatin/gemzar) obliterated all my lung tumors, and I would feel "normal" if not for the letrozole side effects, which for me are bone pain, muscle pain, slight headaches. My onc hopes that my s/e's will subside later on.
My job gave me purpose and joy, but I don't think I could go back to the responsibilities and demands of the teaching profession, which for me are not just mental and emotional but also physical.
Good luck and welcome to this group!
Brenda
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Brenda:
Thank you! That is really helpful. I'm trying to get perspective. My job requires 60-65 hours of work a week, and I need Sunday just to try to regain enough energy to try again on Monday. I just didn't know if that was abnormal.
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Magister, if you are getting to work and feeling worn out at 8:30 a.m., why are you punishing yourself with a healthy person's work routine? I don't know why anyone would want to work 60 hours a week, when there is so much else to life besides work. Even letrozole alone can cause fatigue and other side effects that make working a full-time job impossible. And 65 hours a week is almost 2 full-time jobs.
Between the pain medicine I have to take for the cancer in my bones and lungs, and the fatigue caused by Tamoxifen, it's a grand effort for me just to get out of bed some days.
It was not easy for me to look at myself honestly and admit that I could not work, even for a few hours a week. I tried some part-time work. I am a journalist and even part-time work editing or writing was too demanding. Only you can decide if it's time for you to take a leave of absence, or to stop working entirely. For me, spending time with my family, especially my husband and son, because more important than anything. And it wasn't a choice for me, I simply couldn't work. I miss work terribly but now I can focus on taking care of myself, and learning as much as I can about my treatment. I have the strength, now that I am not working, to read research studies about treatments, and to discuss outcomes with my doctors. I no longer accept whatever doctors and nurses tell me as gospel. Every cancer patient is different and should have a specialized treatment plan. I am not trying to be critical of you. I just sense such weariness in your posts, and I urge you to do what you can to create peace and contentment in your life. Your body will be in a better position to heal itself when it is rested and relaxed. Best wishes to you.
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TarheelMichelle:
I didn't take your response as critical at all! I am so grateful for your straightforwardness. That's why I like the ladies on this thread. You (we) all realize life can be very short, so why tiptoe around the topic? I have a type A personality and am a workaholic, so I find it hard to let go of what needs to be done. In addition, I am single, so I have to work, not just for me, but for others who rely on my slightly larger salary. I don't feel like I can just stop working. It scares the hell out of me. I need the salary and benefits, but I am so exhausted. Frankly, it scares me more than the cancer does. I need to stop and I can't.
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Hi all,
Got my ct results today. The cmf isn't working. Progression in the right lung and now a small area of the left lung seems to be invaded! Not what I was wanting to hear but guess I have been waiting for the "shoe to drop" for some time now. The new plan is to start carboplatin on April 16th and have treatment very 3 weeks. I was able to schedule treatments around a planned vacation with my siblings and their spouses and my daughter's may 17 wedding. Yeah for that!
Magister, I am so sorry that you have no choice about working. I was a middle school reading teacher and absolutely loved working with those kids who needed it so much. Once I started chemo I found I was missing too much work and felt it wasn't fair to the students or the other teachers who ended up covering for me most of the time. I retired on disability two 1/2 years ago and have never regretted it. What little energy I have I can spend on myself. I so wish you had that option. I honestly don't see how you can handle working the long hours and having any energy left. I thought I would go back and tutor once a week or so and don't even have the energy for that. Is there any way you can cut back on your hours?? I remember those mornings when I would shower, dress, do hair and make-up and then need to rest a half hour before going to work. Everything I did made me tired. Do try to tske care of yourself in whatever ways you can.
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Magister, I was wondering whether you might have considered Social Security Disability (SSDI)? Glenna_E mentioned it above. It's like going on "full" social security at retirement age. It's probable that the benefits would be less than your current salary, but nevertheless it may be an option since nearly everyone with mbc can qualify. There is, however, a 5-month waiting period after acceptance. Just a thought!
Glenna_E, I am sorry to hear your news but it's good to know that you were able to plan your special events successfully. I hope that your next tx works well for a very long time.
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Hi All,
I've been home since Friday (Tuesday now.) Thoracentesis gave a little relief but not much. Still coughing a lot and having lots of SOB when I try to exert myself. Met with my oncologist yesterday - he's not convinced I had/have pneumonia, but rather that the cancer is getting bigger. My tumor markers (which had fallen on Ixempra) went up slightly. We're holding chemo for a week, doing a chest x-ray next Monday to compare to one yesterday and then checking markers again. If it looks like Ixempra isn't working, I'll switch to eribulin. I don't believe it is working. I haven't for awhile. He doesn't want to give up since there are so few chemos left to try. Wants to make the most of each one.
I've followed the work/don't work topic. I'm doing a bit of work from home, and thinking of working a few hours at the office tomorrow. I don't know how long I'll be able to work feeling like this. If my baseline doesn't improve, and this is what I have to live with, I don't think I have work a 40 hour week. I love my job, and at 48 am not ready to be retired. But, I need to do what's best for my body.
Thinking of you all.
Laura
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Thanks to all of you for your responses! You've given me lots to think about. It is also encouraging to read about your successes with various treatments, and your love for your families. Thank you so much.
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Magister, I am using up all my sick leave days, full and half, so at least I still have some income. I also have disability insurance. Public school teachers do not contribute to SS.
Glenna, I am also hoping that the carboplatin will work wonders on your bc. Are you getting it with another drug? I had it as a combo: carbo/gemzar. My cycle went like this: carbo/gemzar first week, gemzar second week and gemzar third week. Then one week rest.
Laura, difficulty breathing is listed as a serious side effect of lxempra. I'm sure your oncologist knows what he's doing, but I thought I'd just mention it. When was your last ct-scan? You might figure out what is causing your continued SOB better after the scan.
Lots of hugs to everyone,
Brenda
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Glenna: I'm so sorry you've had progression. I hope your new treatment will be kind to you and tough on those tumors. It's always hard to hear the word progression. It's great that you could schedule things around a vacation. Enjoy your vacation.
I've picked up a laryngitis/runny nose thing and have been trying to get through that. I was reading a tip for people with pleural effusion and wanted to share it. Once an hour: Breath in very deep and hold (for 10 seconds if you can) and then cough the breath out. This helps to clear airways. I wouldn't advise it for anyone just undergoing thorancentesis though. Something I read on the livestrong website that I wanted to share. Jean
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