mets to lung
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gah, my PE didn't show on the CT scan, but did on the PET scan. And when I had my last PET scan, a little over a week ago, my MO had to push for it because the CT wasn't enough last time. Don't know why insurance companies have to be so difficult.
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gah,
Mine seemed to come on fairly rapidly. I had an x-ray as part of prep for removing a bladder tumor in April 2010 that showed normal lungs and developed SOB by early June. A CT scan for another issue in July showed fluid around the lungs. I had more than a liter drained and then six weeks later another liter. After that it stopped on its own and I have "loculated" areas of pleural effusion, but the thoracentesis pretty much cleared up my shortness of breath. I'd think your doctor could hear the difference in your lung if thee's a pleural effusion, and an x-ray to check is a lot less radiation than a CT or PET scan.
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Just been catching up on all the posts here - been away.
Carolsue - great news, I just love to hear the good news, I hope NED is just around the corner for you! Celebrate cos this is a victory. My last 2 scans showed stable and I'm really happy with that!
Brenda, what can I say that won't make the mods freak out? #@>%$ - fill in the letters - dammit, I'm so sorry your mets are back. But, as was said, the Carbo/Gemzar worked so well last time, here's hoping it'll kick the butt right out of those mets!! hugs
Glenna, good luck with the Carbo - hope you still have lots of hair for your daughter's wedding! What a coincidence that your & Chana's daughters are getting married on the same day! What a nachas, a real simcha - that means a blessing and a happiness (correct me if I'm wrong, Chana!). Hope you both get to dance and celebrate being there. Also, may you both see your grandchildren too, of course!!
Aimee, when they did the ct guided biopsy on one of my lung mets my lung collapsed and they had to put in a drain overnight. That was sore! Not the collapsing part, the drain. So I'm happy yours was easier. What were their findings?
Hi Gah, and welcome. You and I sound similar, they found my lung mets 7 months after my original dx. Many small nodules in both lungs. I was asymptomatic. They have pretty much doubled in size since then, and I get SOB and have random pains, but I'm like you in that I'll do an ostrich - if I don't say anything about it, it won't be there kind of thing. Not good. The point is not to be a hero, but to get all the help we need to feel as well as we can. Re the ovary removal, I thought that is only necessary as a precaution if one has the HER2 gene? And I so totally agree with SusaninSF - BAH to stats!!! - we are all individuals and would it help to know how long we have? (stupid question, cos I'd LOVE to know how long I have!).
I have to have a femoral hernia repaired - probably early next month, not a big deal but I'm dreading being back in a hospital, even though it wont be an overnight stay. That's another thing I do - if something is not cancer related in my body I'll not pay too much attention to it!
We celebrate a long Easter weekend here - today and Monday are holidays, the sun is shining, I have some energy, have been to yoga so I think I'll have a gentle walk on the beach and then come home and nap in the afternoon.
Yes, life is good!!
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Carolben, thanks for your sentiments. I am happy to hear that xeloda is keeping your mets stable. You seem to have minimal side effects from it, I gather. Thanks for the enthusiastic and positive post!
Just had the ct guided needle biopsy. Thank goodness my lungs did not collapse. We'll find out in 3 days if they have more information about my tumors!!!
Hugs to everyone,
Brenda
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Brenda, keeping my fingers crossed for good results of your biopsy!! Happy Easter, all!
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Brenda, we had needle biopsies on the same day! I hope your lung stayed stable! My jerk lung collapsed that night after I got home, so I had to go back to the ER. I thought it was nothing because the pain wasn't as bad as I had been led to believe it would be, so I didn't even bring a cell phone charger or a toothbrush to the ER. Rookie move, obviously.
Anyway, results maybe tomorrow or Tuesday. :-/
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Peggy, thanks for the info you shared! Hope you are doing well!
Channah and Glenna: So happy about your daughters' upcoming weddings!!! I believe with all of my heart that these blessed events improve our total well-being!! My youngest, Andrew (26) is getting married next May 2nd! I can't wait! I am concerned that it seems so far away (not distance, time)! They live in Dallas but are getting married within 30 miles of where I live. I live in a rural area a few miles from Oak Island, NC!
Brenda: I am excited about your son's graduation--from law school??? That is awesome! I remember the day that my only daughter graduated from Pharmacy School--I was ecstatic! She is a true blessing from God as well as my two sons!
Carol and Jean: Thanks for your comments, as well!!
To All: Especially (Glenna): I take a Benadryl (25 mg.) right before bedtime and 1 Ibuprofen. I prop my head up on 2 pillows and sleep in a chilly room with my ceiling fan on low! I read until I fall asleep and nothing wakes me up--not even my dog or the coffee grinder! I guess I have always been a very sound sleeper! I don't know if your onc will agree with this or not but I know it helps me and my daughter suggested the Benadryl. Before I forget, it works for me because I'm 66--it doesn't have the same effect on young adults, etc.
Latest news from my wonderful onc: My CA 27/29 was up to 200 and last month it was 180. He wasn't happy and took me off Arimidex/Faslodex combo! He told me we could start Taxol; I would have to have a portacath (sp??) put in and I dread it so much! Then he said that I could do the Aromasin/Affinitor combo and that's what we decided to do! I am on my 4th day and it's too early to have the dreaded SE's. I plan to save the Taxol as a last resort! I have been so fortunate to have had some of the hormonal drugs that helped keep my marker down! I am ER positive; IBC type.
Lately, one of my favorite things to do is go to my bedroom and look out at the beautiful trees and sunshine! I have a lot of birds and enjoy hearing them sing! My mother and Cassie were saying last night that they think it's strange that I love to hear the wind, thunderstorms and rain pounding on the roof! I guess that is a little bit crazy but that's me!
I hope everyone had a wonderful Passover/Easter! Our weather was dreary--lots of pounding rain and gusty winds!
Judy
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Judy, thank you for the wonderful sentiments. Yes, I am proud of him. My father was a lawyer but not one of his 5 sons took after him. He would have been so thrilled.
gah: sorry your lung collapsed!!! Did they do an x-ray before you left the hospital? OMG, that procedure (ct-guided needle biospsy) scared me to death. 5 people in OR acting very hyperactive, and my job was to not move. I'm a kindergarten teacher, am used to the hyperactivity but not the lying still.
Hugs to everyone!
Brenda
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Brenda, you won't be able to contain yourself when you see your son get his J.D. degree!! I am so happy for you!
Also, we have something in common other than this horrible disease--I taught kindergarten, too! I could never be still either! I had to keep up with their never-ending energy so when I got home, I collapsed on the sofa! LOL! How many years have you taught??
Take care and have a restful evening!
Judy
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Last September I had malignant pleural effusion caused by breast
cancer cells. We never found out the hormone receptor status of the
metastasis because the tumors disappeared before the first ct-guided
biopsy was performed.After chemo (Carbo/Gemzar) the cancer was declared "in remission" in
January. A follow up ct scan on April 7th found that it had returned.
This time my doctor scheduled a ct-guided needle biopsy which was
performed last Friday, the 18th of April.The biopsy did not show hormone receptor status. It showed lots of
scar tissue and a little breast cancer. The tumors are very tiny. My
doctor thinks another biopsy is too risky and wants me to start chemo
this Friday. I suggested we do an ultrasound guided needle biopsy under
my right arm. The April 7 ct-scan enhanced a lymph node. He said that
the enhanced lymph node did not look like live cancer to him, but he
added that it was a good idea, it wasn't as invasive, and he will
schedule it. He insisted that I start chemo on the 25th and I agreed.So here I go again, back to the drawing board. Why is it so
difficult to determine the pathology of my bc? Has anyone else had this
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hi adnerb. I'm fairly new to this particular "club" but my lung mets were hard to classify. Initially they couldn't even say if it was mets or primary. I had a ct guided biopsy that seemed worthless for all they could tell me about it. I think the sample was too small maybe. I had to do a PET (finally) to determine if there were any other spots and since there weren't they allowed me to have a lung resection (2 in the same lung). Only then were they able to text the receptor status. And even then, it wasn't completely identical to my original tumor. I still don't know what it all means. But now it sounds like the medical indecisions aren't that uncommon. I'm sorry you are going though this frustration.
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Thank you, Sheila. It is rather frustrating. How did they do your resection? That must have been major surgery. How was your receptor status different from the original one? Last question: what chemo regimen are you on and how are you doing? I wish you the very best and I hope you keep us updated!
Hugs,
Brenda
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Brenda, it was a major surgery. Far more so than they prepared me for. The way the surgeon talked beforehand it sounded like driving by for an oil change. Afterwards, I got to hear from everyone about how it was the most painful surgery. I had kind of figured it out on my own by that point. Lol. I was lucky that they were able to do it video assisted though, rather than an open surgery. He did have to make the incision larger than expected though because he had trouble getting to one of the nodules. So I have about a 10" scar from the middle of my back to under my arm. They had to retract my ribs and I learned from dr google that there are some very important nerves that run under each rib. He took a wedge from my lower lobe and one from the lingula (sp?).
The report said "tumor not pathologically identical to previous specimen" thus lengthening the primary vs mets debate. I am going to ask the MO to explain that to me the next time I see her. I'm one that always remembers a question on the drive home from an appt. I know I need to write things down. MO wants to wait another month to do another scan before starting chemo again. Hoping more than I've ever hoped for anything that it can remain as simple as just cutting those suckers out of me and never seeing them again. I now know that I was metastatic from diagnosis. The nodules were always there but were smaller and grew slightly with each scan I had over the year. They always told me they were nothing. "Lots of people have nodules that are nothing". From my non scientific calculations, none of the chemo drugs shrank them but held them steady and they would grow during the one and two month periods while off treatment. I did Neo adjuvent AC/T and Halaven as an adjuvent clinical trial because I did not have a complete pathological response by surgery time. If/when I start chemo again it will likely be gemzar/carbo first. How did you fair on that combo?
Forgive me, still learning about all this lung business, you mentioned pleural effusion. Are those tiny tumors actually attached to your lung? Or they are in the fluid? Are there many or can they tell? I hope the dr is right and your lymph node is just being finicky. I had one node near my pancreas show on my last CT but didn't light up on the PET. I hope you get some answers soon.
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Sheila, sure wish those in the know would tell us the truth about surgical procedures before we agree to them! I had the right lower lobe of my lung removed in 1989 and it was the most painful experience of my life. I promised myself I would never have lung surgery again! I have a scar that sounds just like yours. My surgery was for a primary lung cancer, separate from the BC. Twenty years later I have mets in the same lung.
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Sheila, the tiny tumors are attached to the lining of my left lung, not in the pleural fluid. I had "too many to count" in September and they all disappeared by January (2 ct-scans confirmed this). I stopped the Carbo/Gemzar in January and my cancer returned to the same exact spot according to the April 7 scan. This time I have "a few nodules", not a hundred like before, so my onc is saying it's not as bad. He seems to think that the Carbo/Gemzar will zap the tumors again. I will start on Friday.
Wow, I thought the ct guided needle biopsy was scary. They would take a picture, push a needle in, take another picture, push another needle in, etc. I had to lie still, but the medical personnel looked like they were in fast forward mode. It was nerve-wracking.
Okay, I will not suggest a resection. I won't do it if I can help it. Even if it gives me more information about my tumors!
Thanks again.
Brenda
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Just wanted to share I've not had an easy go of it lately. Pleural effusion is back and is worse. They are scheduling me for the PleurX catheter tomorrow. Chemo was cancelled as it is not working. It hasn't done a thing (Halaven). I got a version of the "talk," yesterday morning when onc was cancelling the chemo. He called me later with x-ray result of the lung and wants this catheter put it rather quickly. He is not sure there are many options left but is going to look into Navelbine as an option but wants to get the breathing stabilized first. I'm not sure how to process all this. He said his job is to help me and he doesn't feel the treatment I was getting was helping me at all and I've cycled through a lot of chemo types. He talked to me about the option of going to a bigger facility and looking for a phase 1 trial that I might be eligible for. I'm in such distress with the breathing that traveling hours and hours away is just not an option. Any thoughts? Jean
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Jean I am so sorry to hear that things have been so difficult. I hate this awful disease. I see that you are ER/PR+. Has your onc ever mentioned Afinitor/Aromisin? That is given for ER+/PR+ where it is Her2nu negative. Also you don't mention that you've had Faslodex. I think many times it's combined with Arimidex. I am on Afinitor/Aromisn along with Halaven. The Afinitor is a pill, so not really that difficult. I wish you luck with your procedure and will be praying for you.
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Carolben, to answer your earlier question, I had the radiofrequency ablation which was like going in for a biopsy that instead had electrified needles that they used a real time CT scan to determine location, then for lack of better technical terms zapped them at 65-70 degress centrigrade (might hot) for 12-16 minutes each. In 2 more months they will scan again and hopefully they will be completely gone, or just show a little scar tissue. that is the hope, and that no other ones have popped up in the meandtime.
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Jean,
Sorry to hear about what your doctor said but it does sound like you need another opinion. Would it be possible to do so remotely? Send your records to a major research hospital and have a consultation over the phone?
I am still learning about lung mets treatments since they are focusing on my brain mets first. My cough has been a lot worse the last few days. Hardly got any sleep last night. I called the triage nurse and he said it sounds like I just have a "bug" so drink a lot of liquids, etc. Wondering if I should see a lung specialist. Kind of feel like my lung (4cm tumor plus "satellites", whatever that means) is getting short shrift. From a symptom standpoint, the coughing is my worst symptom, don't have any brain symptoms yet ("knock on wood!").
- Susan
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Jean, maybe your onc could refer you to a larger center that would do a phone consult, and the your onc could try to incorporate those recommendations? I'm sorry to hear you're having a hard time.
Adnerb, I don't have pathology yet back on my mets, so I have no advice, but a lot of empathy for how frustrating it is to not have answers.
I have a question for you ladies: how long did it take from starting treatment to get relief from lung mets symptoms? I'm so sick of coughing and having my lungs hurt if I even speed walk, and it seems to be getting worse so fast. I don't have a treatment plan yet because we're waiting on final pathology, but I'm just getting so frustrated with the waiting game.
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hey jean, so sorry you aren't responding to the halaven. I like the idea of a telephone consult if something like that can be arranged. I know Enjoyful is involved in a trial in Boston. It's not Dana farber but somewhere else. She is having good results! Don't know how far away that would be for you. Hopefully once they get the breathing situation under control you will feel more able to travel. Keeping you in my thoughts and hoping that cath does it's job quickly for you! Hugs, glen a
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gah -- my symptoms were BAD when I started treatment. I'd get out of breath just walking across the room. Couldn't do basic household tasks like emptying the dishwasher. Forget speedwalking -- just walking up a single flight of stairs, I'd have to lay down for 5 minutes to recover. I was pretty much homebound. Never went anywhere because everything was too much effort for me. Couldn't go through the grocery store without an electric scooter. (And a few short months before, I was in great shape, walking 10-15,000 steps a day, every single day!!) I never dreamed I'd actually look forward to having chemo, but even the thought of chemo was preferable to how bad I felt. I noticed significant improvement after my very first chemo treatment. My cough wasn't completely gone, but it was much, much better. My oncologist put me on oxygen when I had my first chemo treatment because I started having trouble breathing during the treatment and my O2 sats dropped to 86. I got an oxygen unit at home and carried a portable tank with me everywhere I went. But by the time my third treatment rolled around, I was off oxygen completely. I still cough some, but I it's a very different cough now that I attribute to chemo side effects (throat irritation), and I still get out of breath pretty easily, but I think that's to be expected having been as inactive as I've been for so many months. Hopefully as soon as I finish chemo I can work on building my stamina back up again.
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Jean, I am so sorry that your PE keeps coming back and is getting worse. I hope that the catheter relieves you of the PE and the accompanying breathing problems. When your breathing is better, Navelbine might just be the chemo for you!!!
gah, my symptoms got better after the 3rd treatment. I was having weekly infusions.
Carolsue, I am so glad to hear that your cough is getting better. The chemo is working!
Hugs,
Brenda
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Aimee, were your mets on the lining of the inside of your lung?
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Just to update: The radiologist did not think moving to PleurX catheter was the next move, so he performed the Tap which worked much better than the first time. I was at a different facility too. The facility I went to was much calmer and quieter. Did not experience the pneumothorax (Big hurray). They did not use a pump either. They tapped and let gravity do it's thing. They said they've been doing it this way for 14 years and it works great, so they never added a pump to assist in draining. Oncologist office called yesterday and they are moving to plan on Navelbine for Monday although they don't have official word from onc yet but wanted me to know I may very well be starting the Navelbine right away Monday morning. I have some relief from the PE but I expected a lot more relief. Am I expecting too much or is the relief minimal? Maybe I'm deconditioned from so many weeks of labored breathing. I walked from one room to another this morning and rinsed out a glass with no trouble which was the highlight. I'll be thankful for the little bit I can get. I hope everyone is doing well and has had good weeks. Hugs, Jean
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I'm with you, Jean. Every little improvement in your breathing is something to be thankful for.
When my pleural effusion showed up for the first time on a chest xray I was taken to ER and admitted to the hospital for 5 days! After reading about so many people who had the PE and not the hospitalization it is becoming clear to me why my PE was treated differently. Not being "sick" for 4 years forced the medical people to test for other major things, besides cancer. No one knew yet that I had lung mets so they also had to test for heart problems, pneumonia, TB, embolism and other major things.
My first thoracentesis was done at the hospital. I hated it!!! It was the way they did it. They were not gentle and talked to each other like I wasn't there. My latter experiences with this procedure were 100% better. The ladies talked to me and were very cognizant of my needs. Jean, I am glad that your procedure went well.
HUgs,
Brenda
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Jean, I wonder the same thing about breathing getting better. I'm very happy that my cough is almost completely gone, and my breathing is much better than it was, but will it ever get back to normal or near normal again? I wonder if it's partly being deconditioned like you said, and maybe if I start walking a little each day, I'll gradually see some improvement. I also wonder if some of my SOB might be a S/E from chemo. It seems to be a little more noticeable around 10 days after chemo, which I think is also when my blood counts are supposed to be at their lowest. Could there be a connection?
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Carolsue, I just read that pleural effusion is a rare side effect of herceptin but not perjeta. Hope this helps.
Hugs,
Brenda
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My cough was getting really bad at night and my MO thought it might be an infection rather than the lung mets so she put me on a short antibiotic regiment. It was better that night so a pretty immediate response. I also find that my allergies seem to impact my coughing a lot so I have become super vigilant about keeping the bedroom clean (I have dust mite, hay fever and cat allergies though we have a cat) and have replaced the filters in all of my air filters. When I'm not in the bedroom I put the air filter on a higher setting to clean the air better while I'm not sleeping. I also pop an Allegra every night before I go to sleep. So far, my breathing is mostly okay and still even go to dance class. Try to keep exercising for as long as I can. Starting on brain and eye radiation Monday morning which will slow me down.
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That's interesting, thanks Brenda.
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