mets to lung
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Hi Momo, Blondie, Gator and Carol!
Thanks for all your well wishes! I asked my Doc for a brain MRI because the markers have been climbing. Had that done on Wed and, lo and behold, mets to the brain. Only 4 spots, all under 1cm, so I start rads to the brain tomorrow. I've been reading all 99 pages on that thread. Guess I have to focus on that for awhile.
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Hi Skylotus, Sending hugs and prayers that your tx tomorrow will successfully send those 1cm buggers to "GONE". Peg
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Hi sky, glad u pushed it with the dr. In ur pocket
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I wrote a whole long screed and managed to wipe it out the other day!! Hate when I do that, and just didn't have the energy to write it all again....
Had 2nd infusion on Friday - pretty much the same, knocked for 6 the first 3 days (plus I had a migraine yesterday, to add insult to injury), hopefully will start feeling better tomorrow. My wbc and neutrophils dropped a lot after the first chemo - not enough to put off the 2nd one, but I do have to get my blood tested on Thursday again, (even tho I have no chemo on Friday), just to check they're ok. The weather's been cold and windy and a bit rainy so I've stayed next to my heater, under a blanket on my couch - so cosy - that's where I am now, and plan to stay here all afternoon! And I don't feel the least bit guilty about it. That's a change!
Brenda, dammit, I'm sorry about the stuff in your lungs, but thank God the rest of you is clear. I was also so relieved to know it has just stayed in my lungs and not spread! Good luck with the Abraxane, I hope it'll be easy on you and hard on those sneaky mets!
Carrie, how was your next chemo?n I really hope you did get them to weigh you again? Hope you're coping. I know that because of my blood counts my chemo nurse did check with my onc if he wanted to do the same dose, and he did. I have 2 weeks off now - and feel I really need it, already!! This stuff has a kick to it!
Surfdreams, am so sorry to hear of your allergic reaction, and I totally get your reluctance to stop a chemo that's working cos as 3neg we have a smaller arsenal (that I feel like I'm burning through too!). I'm on Cisplatin, not Carbo, which I read is a bit harder, maybe that's why my se's are harsher. But who knows, we all react differently, as you know. Please let us know what you and your team decide to do. I'm sorry I'm no help on the issue, but hope someone else can be. In the end, I generally let myself be guided by my onc, but I do like to have all the information before deciding on big things. hugsxxx
CarolSue - the stable boy rocks!! Long may you hang out with him!! great news!
Welcome wrsmith2x, we're all in more or less the same boat here, hope you find lots of help from the threads. It is such a shock to hear of progression, especially after a while. Hang in there, let us know what's happening - there's many of us stage iv metsters (triple neg too) still around and kicking!
Wandering, thinking of you and hope your onc can sort out what's worrying him (hate it when my onc is worried, it's scary!!) Waiting for scans is the pits, so feel free to vent, share fears, laugh, cry, whatever. Keep breathing!
Hey GatorGal, yes, the 2 week break has started, still pretty flattened today, but from tomorrow it'll get better. I'm writing a (short) list of stuff I want to do - finish off crocheting that blanket for my niece, and plant up a bunch of pot plants for my garden, and get a bit of sewing done. Apart from the planting, the others require little energy, but I've been too tired to even do that! Geez.......
Cathy, how are your side effects from your trial. I seriously hope it's doing a demolition job on the mets!
Blondie - I so respect the courage of your decision to go off chemo, and know it must be a hard one, but you are so right - qol is important. I can manage 3 crappy days after chemo, but a year in bed with no qol is not living. You are blessed with so many grandchildren - it must be a huge affair getting all your family together - and in the end, that's what counts for me - my family (& friends), but mostly family. I have no grandkids (my 38 year old son would love kids but has a problem committing to a woman, or whatever), so I've adopted my sister's kids as my surrogate grandkids and love them so much. Surround yourself with their love, Blondie, you are one gutsy woman! When I'm moaning about se, I remind myself that it's my decision to have the tx, and can stop any time. I'm definately taking a chemo break after this lot!!
Time to move into a horizontal position.
Hugs all round x
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Has anyone here had a lung metastasectomy?
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wmrs. I never heard of it.
Thanks Carol, well I stopped chemo b/c of being out of it for a long time, and now I am present but the lung thing (being on oxygen 24/7) certainly stops me from doing things. I can't go by myself, I need someone to go with me even to the drs. which doesn't happen, so either I am out of breath OR I have to call ahead and they come down and get me....sooooo annoying...(I am having a pity party today so sorry)....I still can't sleep am up every night til about 330 and then sleeping most of the day away....again annoying....would like to take a trip somewhere, some kind of vacation, the travel oxygen doesn't permit that the battery doesn't last that long without being charged....oh well I am alive, guess that is good....It would be nice if I had the kind of family (only child, kids are the only family cept for friends) and they are off doing what they want to do, like vacations and life...Grandchildren are awesome, when I see them...Looking forward to grandson playing foodball, one of the reasons I stopped chemo was cause I missed all of his baseball games cause I was sick. OMG so sorry for the rant...This disease sucks!!
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Hi Ladies - First of Carolben- sorry your chemo is hitting you so hard but yes we are blessed there are treatments that can help us! You are a trooper -- remembering everyone when you are down and out from your treatments. I am doing well on the drug trial with liveable s/e's. The good news is some oncologists (mine included said promising results coming in from study) are saying good things about this one drug in my trial. Comparing it to a break through for breast cancer treatments like years ago Aids was a death sentence and now it is controllable for many years in many cases. OH YEAH.. listen to that ladies! Like to hear that stuff!Skylotus - So sorry to hear of your progression to brain. Sure hope the rads work great stuff for you!
wrsmith - my mets are to both lungs and I was told I wouldn't have enough lung left to survive if even spots were removed. That and it can cause spread. I have heard of some having a lung removed although not sure of circumstances. Don't think it is a common practice in oncology but you can ask about it for sure.
Blondie - We all agree this disease sucks yes but we have to try to enjoy what we still can .. there are some things cancer hasn't taken from us and I do my best to keep that in mind although sometimes hard. Hope you get to see those grandkids soon.. God Bless and stay brave and strong for a long long time!
Cathy
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Hi wrsmith.....i picked up a great article on "metastasectomy" in the British Journal of Medicine. I also would like to hear from anyone who is considering or who has had such a procedure. I will keep tuned in. Peg
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Interesting! Had never heard of this before. Found this article too:
My MO has never mentioned surgery for my lungs. At last scan my lung mets were shrinking and becoming less active so maybe it's best to wait and see for now but this article is very compelling. Much longer survival with the metastasectomy.
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Blondiex, You need a hug ......so here. I am so sorry that your search for a better quality of life is so slow in showing up. I have a few suggestions; RE; the O2 portability...it is possible to get a carry along O2 apparatus......have your onc work that out with you. Getting out would be absolutely terrific. Does your onc have a nurse who coordinates care with such providers? Also you would really benefit with help in allowing more continuity in sleep time. I know what it is like to some nights get just snatches of sleep....again onc can help there. Is home care nursing a possibility for you? They are magic in finding what works and how to get it. Please go ahead and rant it is okay and maybe just maybe a good solution will pop up. The gals here are great! Here's another hug
Peg 0 -
hear hear, Peg, good advice, Blondie, to get help in, balance meds to sleep nights (such a lonely time to be awake). It's not giving in to get help, it is actually a solution & takes some courage to do. It could be only temporary or longer, as you need it. I really hope you get to that space where your light goes on again! Sorry am no help re O2, not a clue, but understand your frustration at not being able to do things on your own! Rant away, girl, you are dealing with so much! Big hugs
Cathy, that is good news! Pleased your se are liveable.
Am on day 4 after chemo, feeling better, just my legs & arms are like jello, hoping that'll improve as the day goes along. I have a huge desire to walk on the beach, so I'll rest a bit and then go.
Bright bubbles of love for all of us
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Blondie -- sorry you're having so many challenges and having to deal with it all without much in the way of support. I had to be on oxygen 24/7, but only for a short time (about 6 weeks). I had a unit in my home that kept the O2 flowing constantly, but for when I was out and about, I had a small tank that I could carry in a pack over my shoulder. Instead of running constantly, it somehow sensed my breathing and would push a "burst" of O2 whenever I inhaled. It worked great and allowed me quite a bit more freedom. Do you have any support groups or volunteer organizations in your area? I belong to a BC support group, and the women who have completed treatment are very often helping out the women who are going through treatment with transportation and such. Our local hospital also has a list of organizations with volunteers who will help out with transportation. I wasn't able to drive myself anywhere for several months, and having to ask people for help was very uncomfortable at first. It took me a while to get past the idea that I was being a burden to people. People LIKE to be helpful, and they so often don't know what they can do to help. So I tried to start seeing it in a different way. I wasn't being a burden -- I was somebody's opportunity to do a good deed. I eventually got to the point I'd just post on Facebook: "Hey -- I need a ride to a doctor's appointment Tuesday at 9:00. Anybody available?" I actually had a wonderful friendship develop out of me needing a ride. (Somebody that had previously been just an acquaintance.)
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Sky, hope you zap those pesky little beasts to extinction!!!
Carolben, just fyi. You will not lose all your hair. So that's a little bit of a silver lining, eh?
Blondie, I hope you keep us posted on how you are doing. You never know. Sometimes all your body needs is to have a break from the toxins that chemo has.
I had my first infusion of abraxane on Friday. I felt great Friday! Did all my errands. Felt great all of Saturday! Sunday morning was very good, had a big lunch and dessert. Then Sunday late afternoon: bam!!!! My whole body hurt: teeth, bones, ends of toes, lung. It wasn't constant. It would come and go, like an orchestra, each body part playing a different instrument. The pain was too much I had to take a hydrochodone. All pain instantly went away. So I went to sleep and woke up Monday to a different story. While I was in the bathroom trying to do my business, my vision turned dark. I felt like I was going to faint so I cleaned up fast, got up and fainted on the bathroom floor. I tried to get up but I couldn't, but as soon as I got the strength, I literally jumped into my bed from the bathroom. My sweat was pouring, but I felt so much relief I fell asleep again and did not wake up till late Monday afternoon.
I know I have to call the doctor to let him know, but something tells me this chemo might just work! 5 years ago taxotere gave me the same side effects and 4 years of remission.
Hope the rest of the week is symptom free for all of us!
Brenda
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Brenda, Your positive attitude really inspires me. What you described in terms of side effects sounds so scary but you are able to see that the strong side effects probably mean that the chemo is working.
Blondiex, Have you read the book "Radical Remission". I believe it was Carolsue who told me about it. There are many cases of people who stopped treatment voluntarily or who were told there was nothing else that could be done who experienced complete remission. Stopping treatment could be exactly what your body needs at this time. Thinking of you and sending big hugs!
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I feel a bit guilty because I haven't been on BCO much. BUt thought I should share that it is because I am feeling so well after some time with Remi, now followed by dancing with the stable boy. I always think the worst when one of our sisters stops posting, so I thought I would check in to say sometimes it is good they are away!
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Pardon my intrusion, as I know I am not supposed to post in stage IV but I need a favor. My Mother is newly diagnosed with malignant pleural effusion (still waiting to find out if she too has breast cancer). She cannot get in for draining until Thursday and she is having trouble breathing. This is all new for us and I am wondering if anyone could private message me if there is anything we can do to make her more comfortable. I told her to build up her wedge so it is even higher for sleeping and she has continuous O2, norco, and lasix (? spell).
I have been searching on this thread for ideas but thought chiming in may get results sooner. I sincerely appreciate any helpful information you may have. Blessings to all of you here.
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Oh Adnerb......some serious allergic type reaction there for you! It could be the Abraxane or the hydrocodone or a combination of both. You are right to get the onc involved. I had Abraxane with my first dx 8 years ago and had a very similar episode. I did not really hydrate and had a significant drop in B/P ..felt extremely weak etc. So it was lots of water for me. I could imagine that added hydrocodone would have had me checking the bathroom floor out also. I am so glad that you were not seriously hurt and hope that you can get pain relief that does do such a number on your B/P. Hope next tx is kinder. Peg
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Beckers, It sounds like your mother is really struggling. She really needs to be seen now in a hospital emergency department. I would suggest transporting her via EMS for emergency assessment and treatment there. They will do the necessary evaluation as to what is needed now to stabilize her and provide needed relief. I wish your mother all the best in her care. Peg
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Momo, Blondie, Tryin and Adnerb, thanks for all of your positive thoughts! I had the first of 5 zaps today. Here's to hoping it will make me smarter!! Like "George" in "Phenomenon"! ;-) Not much goin on at brain mets thread.....
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Skylotus, sorry about those bloody brain mets, hope the rads will zap them! You have an amazing attitude, it's humbling!
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hi Carol! Thanks for your words! I hope the rads zap them too!
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Hi fellow lung metsters,
You can always tell when I feel good. Like Chanah, I'm off having fun and forget to log on here. I love coming back to hear how you all are doing but feel bad when the news is mixed. Went on a 4 day trip with some friends last week and then Busch gardens and water country with my son and grandson early this week. Back to chemo today. Rode every roller coaster and forgot all about my pain! LOL!
Carolben, you are doing the right thing by hanging on the couch when you feel the need. Listen to your body!! And no guilt, ever!!
I can't believe they didn't weigh you, Carrie. They always weigh me before every chemo and the dosage depends on the weight. I have had to have dosages reduced a couple of times due to low counts.
Blondie, I totally understand your decision to end treatments. The time you spend with your family is so precious and it is important for you to feel as good as possible. I think we all need a break from chemo from time to time. We just need to feel normal.
I've been hearing good things about the abraxane, Brenda. Hope the SE's aren't too bad and it kicks that stuff out of your lungs!!
Scary stuff, Surfdreams. I always worry that I'm going to run out of protocols but my onc says there's plenty left.
Yeah, CarolSue, keep hanging with the stable boy! Love your good news!!
wrsmith, so sorry to hear of your progression. You've come to the right place for venting, questions, hugs. I'm 6 years with lung mets and don't think I'll go anywhere soon.
Oh man, Wandering, waiting for scans makes me so anxious. We'll be there with you!
Cathy, hope your trial is going well and SE's aren't too bad. Let us know!
Skylotus, hugs to you. Hoping the rads do the trick and zap those brain mets.
Beckers, Sadly I have no advice to give. I do have cancer in the pleura and it can be painful. I take oxycodone just about every afternoon and evening and clonazepam to sleep. I hope things go well with your mother. I've been receiving treatments for 6 years and am doing pretty well.
Never heard of metastasectomy. Will have to research it. My onc has told me over and over, no surgery. He says the cancer is already out of the gate and surgery on the lung might cause me more harm than good. I did have a right lower lobectomy in 1989 for a primary cancer.
Hope I didn't miss anyone. This is always the first thread I come back to when I've been away. Hugs to you all .... Glenna
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Hi Glenna, Welcome back! Your message was like a breath of fresh air for me. I was diagnosed MBC with mets to the lung this January. One of the lung docs involved in my care after my partial pleurectomy was very stoic re stats etc, etc . I kind of joked it off and never did like stats anyway. Your post today was so "what I needed to hear"....."6 YEARS!!" Good for you gal and many more milestone rides on that rollercoaster. That's terrific! Hugs, Peg
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Peg, most of us here pay no attention to stats. By the time the doctors are stating them, they are already out-dated. You will often here "stay away from Dr. Google" on these threads. When I was first diagnosed with mets to the lung my onc told me I could easily live 10 years. Honestly, I didn't believe him. As the years went by, though, I became a believer. I have seen a new granddaughter born and a daughter get married. My youngest son straightened out his life and is doing well. I'm so happy I got to live to see those things happen. Wonder what is yet in store for me?? And you?? And all of us???
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love your attitude Glenna, truly inspiring! I love roller coaster rides etc, the wilder the better (& no, I'm not an adrenalin junkie), glad you're having fun!
Am once again flat on my couch (without guilt, Glenna!) under a blanket! Had blood test Thursday & a call an hour later from the Oncology Clinic (2 hours drive away) saying my counts were too low & to come in for Neupogen. And this is 1 week into my 2 week break. Don't know when I was last this tired, feels like someone just sucked everything out of me! They gave me 4 more shots to take home, so my pharmacist angel will give them to me, am so not up to sticking needles into my tummy right now! Will have another blood test on Monday.
Shalom Chana! Great news - long may you dance with the stable boy!
Brenda, that is scary. It happened to me on the AC - I fainted on a tile floor and managed to concuss myself, not pretty as when I came to I threw up every time I moved my head. Thank God I had my cell phone in my pocket & could call a friend. You know you have to tell your onc, they won't necessarily take you off the Abraxane, but this is probably something they need to know. Hope you're feeling better. Gosh I so don't like feeling sick!!
But for right now I'm done, not moving from here!!
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Carolben - Sorry that chemo is sucking life out of you. Hope the neupogen shots work their magic!
I'm doing well on the trial but lots more hot flashes BUT I do think my breathing is some better. I noticed climbing stairs doesn't leave me so breathless now too. Hoping I'm getting the real deal and not the placebo and that is why. Was back in to see onco and trial team yesterday and had all my blood work, and my 3 ECG's 2 mins apart and everything is still looking good. Only I had a major blood sugar low (insulin dependant diabetic) just after walking out of lab and had to sit and volunteer brought me juice and food till I started to come back up. After finishing all the visits my oncology nurse came running back into the room and asked kind of funny " Are you ok? " I said yes I am now. She said I just got some of your lab work and your blood glucose was only 2.2 ( different reading system in Canada) and it should be 6. Anything under 3 and you can go into a coma. Then my oncologist came back in saying same thing basically. They made me stay and got my more juice and waited then tested my bs again and I was back up to 5.3. I think I kind of shocked them that I was still sitting but I know the signed of having a low. Severe weakness and shakes and sweats and this time dizzy too. Anyways was a full day as I was there for hours but had a good friend with me so time passed well.
Hope everyone has a nice weekend and feels well enough to enjoy it. Here in Canada it is a long weekend our "Civic Holiday". Hugs to all and holding hands in our circle to all that need it.
Cathy
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Carolben, chemo has me knowing my limits .... I'm in bed today, too. No guilt! Had my neulasta shot yesterday and it always takes a couple of days for me to get my energy levels back. Hope to be leaving on Monday to go to my mom's in Florida for a couple of weeks. Have appointments with several retirement communities/assisted living to take her to. She lives out in the country and Internet is sketchy. If you don't see me here that's the reason! Cathy, I like your holding hands to all in our circle who need it. Very cool image!!
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Gator, do you get any reaction from the Neulasta shot....that is one of the reasons I stopped chemo cause of that reaction...if not so happy....have fun in fla....so jealous!!0 -
Thanks GatorGal and I sure hope your feeling better for your 2 week Florida visit!Cathy
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Blondie I have never had a reaction from the neulasta shot. Someone said it could be because I take Claritin everyday for allergies. Whether that is true or not, I don't know, but I am glad it has never affected me. I'm just tired from the carboplatin. My onc gave me a prescription for Ritalin which I plan to try out tomorrow morning. The insurance company wouldn't pay for it but I figured it was worth a try and it wasn't too terribly expensive. I've heard other women say it helps with the chemo fatigue. One of my reasons for dreading Florida is that my mom doesn't like to use air conditioning. I plan on playing the cancer card and maybe she'll feel sorry for me!! LOL!
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