Hello Barb, my mother had a very similar situation in regards to the lung mets and the chemos you've been on.
Mom was on Xeloda first but had progression and was switched to Doxil. She had progression and developed a malignant pleural effusion on Doxil so she was switched to Abraxane. Unfortunately, the Abraxane made her counts so low that the doctors couldn't bring them back up and she died due to organ failure.
Because of the lung mets, the doctor was planning on trying Navelbine next. I researched it extensively and it sounded like a very good match for dealing with the lung mets. Sounds like your doctor is staying on top of things and I hope this new drug is the one that does the trick for you!
My son is special and loving to me - was before I got bc and even more so now. BUT You have excelled in being the son every mother would love to have. I, as a RN, can figure how much time and energy you put in research to help your Mother. I know when I don't feel good I don't feel like doing the research I could and should do.
Thank you for coming here. For me I can only speak for. I will keep you in mind and maybe tell you one day the story of me and my sledgehammer and an incident about 10 days after I was told I had lung mets.................
I am one of those that has 100's of tiny mets all through my lobes of my lungs but Femara and now Tamoxifen have kept them from increasing in number or size since discovering them in January. My bc blood tumor count has dropped from an initial 80 to 56 and now 26. I have no problems with breathing. So far, I'm doing well.
My main concern is my tumours are too small to remove and they can't give me radiation, so drugs are my only avenue....and you are saying there are many out there so I'm very grateful.
Starting to feel better after chemo on Tuesday - this stuff is knocking me now, but the end is in sight - 4 more to go!
Justagirl, the weather affects my mood big time too - always has. I went through chemo and radiation in winter last year, and chemo most of the winter this year! I've been feeling so exhausted and achey so haven't been doing much - staying in bed later in the morning and napping in the afternoon, watching Wimbledon in between, till it's time for bed at night!! Wow, a really exciting life! I also had a couple of really down days, feeling like I just don't have the strength to do the next 4 chemos, feeling like all the life has been sucked out of me and I'm this aching shell etc etc. I do offload to my sisters, who know I just need a shoulder or an ear, and know they can't fix it, but they are there, as are friends, so there is a lot of support. I've had to learn that people need to be told if I need something, I need to be specific - to the 'how can I help' question. Living alone I like it when someone comes over and we prepare and eat a meal together. It's cold outside and there are lots of flu bugs around, so I'm not going out much, so I get people to come have coffee with me. It sounds like you live in a little piece of paradise, Justagirl!
Debbie, the mindfulness book download sounds interesting, thanks for posting the website - 69 pages is more like what I can handle with this brain! I did read a book by Brian Weiss (you mentioned him Sarahlou) called Beginning Mindfulness, which I found very practical. It's only when I'm mindful of what I'm doing in the present moment, that I live in the present. And there is usually nothing to fear in this moment right now. We learn to dig deep with this illness, which is not a bad thing.
Sarahlou, I'm busy reading Bernie Siegal's book, Life, Medicine, Miracles right now - well, inbetween novels - I really like what he has to say! Mostly I read fiction tho - it's my best way to just escape.
Glenna, what did the ct scan show? Hope 'insignificant' progression really is just that - insignificant!
Carolben: glad I'm not the only one affected by the weather. Sometimes it really makes me feel even more looney if I tell someone outside of here that.
Wow, I think you are going great with your chemo! I found the first 4 days after it not so good, then advanced for a week like you are doing now, then had a good week before going again. I'm just glad there are treatments out there for us.
Yes, the book is exactly the right number of pages for me and since I got to print it out, it's easy to read and sometimes I mark things as I go along or write notes. The one thing I found very helpful in his book was to stop trying to change things that I just can't change: like I can't change I have lung mets. I can be positive, or try to, I can work on taking care of my overall health, take the drugs the oncologist says, but it will always be with me. Hopefully I will have a time before I have any symptoms or breathing problems, as of right now I now say it's a 'non-issue'. It doesn't interfere with my lifestyle other than I think the meds make me a bit tired but my breathing is as good as ever. And I'm up for the fight when the time comes. I fought the original BC, and I may be small, but I'm also stubborn and determined. I have a 19 year old son I still need to give some energy too and my 79 years old husband is scared his tarnished trophy wife might die before him! He never said so, but it's a little joke of mine. I am 20 years younger than him, and he still is physically active with swimming cycling and outrigger rowing, so we have been a good match these past 34 years. I need to stick around to support him......as he now supports me.
Would you believe now my hubby, who has never done a lick of housework does all the floors and area rugs on two levels of our home weekly? I have a Rombo so I set him to do the upstairs bedrooms, etc for my share of vacuuming. And he is helping me more in the garden! I feel bad sometimes as he should be doing less, but he says he can and wants to. Like I don't have the arm strength due to the latissimus dorsi flap mastectomy to start my leaf blower or chainsaw, both of which he won't use, but he will pull the cord to start them for me. Ah, true love.....
I think like you and don't mingle with crowds. I am and always have been quite happy here at home. Even when I worked 12 or 24 hours shifts in the ICU, I often would on my days off never see anyone. Go for a run and bike ride or swim, or work on glass, read, but happy being with just me. Now I have a great 16 year old ginger cat, Fred and my lovely gir dog, Jaki, a collie/blue heeler, who is 8 and they are my company here. My husband goes out most mornings before I wake up and comes home in the afternoon.
Carolben,Thanks for asking. I'll have the ct scan on Wednesday and get the results the same day!! Hope the tumor growth has been small and insignificant!
I have just been diagnosed with mets to my lung and liver. I want to add the info that most of you put at the end of your posts giving the info regarding the history of the cancer, but I don't know how to.
Rozann,I sent you a private message. Hopefully you will be able to add more information about the specifics about your cancer. Sorry you had to join us here but you've found a lovely group of women and we're all in the same boat!
Glenna I think it's difficult for us to see any progression as insignificant. Hope your ct scan offers more reassurance.justagirl I must have a look at stillmind.comI'm back in hospital just now as breathing has been getting worse. There is some fluid build up again so will have right lung drained again tomorrow. Just a bit worried it's building up so quick as was only drained 3 weeks ago. Have only had 3 sessions of taxol so maybe too early to expect results.
Glenna - thinking of you having your CT
Gail: I don't think any progression is insignificant. I think every morning I wake up is a plus.. Look at the stillmind.com You can read his book on your computer or download it. I downloaded it so I can easily keep reading where ever I am and like to mark area and dog-ear pages. It is the first piece of reading literature that has helped me with this Devil. Sorry your breathing has gotten you back in hospital for another drain, but you will feel better afterward. I know as a nurse until they can stop or decrease the source of the fluid, it will just come back. Sorry, it's not your fault - it just happens. Why not ask your Dr how long before you should see some results from the Taxol if it is going to work at all? I don't think that is an out-of-line question. Try not to worry. The draining of your lung is a common and often done procedure. Just be sure afterward you change the dressing at the site daily after you shower and squirt on a little anti-bacterial ointment if you aren't allergic to it....insurance I say. Will be thinking of you !
Rosann: sorry you have had to join us here, but I'm kind of a newbie too and I like the women here. I draw inspiration and strength from them.
Oh, Gail, sorry you are back in the hospital. I hope the taxol starts to help you soon. I had the fluid drained once and didn't like it one bit. CT tomorrow morning and hoping for good news. I must admit, the Pollyanna that is usually me is hiding and I have been worried all week about what I might hear. Great weekend at the beach with my youngest son and my sister from North Carolina. Rozann, hoping to hear from you again.Justagirl, you are so supportive of everyone .... Thanks for being here for all of us!
Hey Glenna, I'm just me! That's why I am 'justagirl'.
Will be sending you positive thoughts tomorrow while you are enduring the CT. I always freak out before these tests to the point it seems like I am not taking my anti-anxiety pills! I lose weight, can't sleep and am ready in a second to go from being upset to full-blown angry because I'm so uptight. 'Pollyanna' would be hiding too, if she had to go through what you are!
I think it's perfectly natural for any of us to worry about upcoming tests and then hearing the results. My kind GP tells me to not get worried until the week before the test but then she adds it's easier said than done.
I think every time I spend any length of time being upset about these mets, BC is taking more of my life from me - and it's the good part!
Glenna, you have made me see that you can deal with the treatments and have fun, going places and visiting with friends and relatives.
I've become somewhat of a recluse, liking the serenity and safety of our property. Here it's just my husband, son once in a while when he comes home from uni, my Jaki and cat Fred.
It started when I had chemo, as when I went out with my bald head covered with a very nice scarf - well, everyone knew I was going through chemo. My sweet husband said I looked beautiful and everyone wore scarves, but not covering their entire head! Also without eyebrows and eyelashes and being pale, I would try my best with make-up but felt I still looked sick. And YOU make me feel like so what!
Now my hair is long again, I've put a few pounds on, been out gardening a bit so my skin isn't so pale and I've just got to stop thinking of when I'm going to lose my hair to chemo or not have the energy to garden. That depresses me.
I am so thankful to of found this thread. I don't feel alone anymore. My husband likes to say there is nothing wrong with me, but he knows the truth of the diagnosis. I like to say my lung mets are a 'non-issue- right now, so why talk or worry about them.......that's what I say to everyone else but you all here. Can't pretend I'm not scared and worried about what is ahead for me in the future.
The worst thing I did was when the oncologist was first discussing the lung mets, I asked her how much time I had and she said 3 to 10 years. Yikes - as little as three years? I would only be 63. 10 years I would be 70 - that's better.
So having always been a person who likes to have goals to strive for and projects to do: does it seem silly to have the goal of being as healthy as I can by eating a balanced diet and exercising moderately? That to me is the most important goal but I sure can't say I'll train and do a triathlon again, or paddle in an outrigger canoe race for 6 hours. Projects I have - areas of my garden - I never have them all looking good with 1 1/2 acres but I'm trying before the summer heat hits the beginning of December, and on days I can't garden get my butt into my studio and work on glass. Being creative used to relax and recharge me.
You're here for me - I'm here for you all!
Glenna, thinking of you today and hoping for excellent test results!
Debbie, thank you for your kind comments! Would love to hear about the sledgehammer story one of these days! - Paul
Well, it's 3 in the morning and I'm on my decadron high. Fortunately had a 3 hour nap after chemo so shouldn't be in terrible shape tomorrow! Will be picking up my grandson after lunch and he will spend 6 days with us (til my next chemo day). On Saturday we are taking he and our other grandson to the Orioles game. Fun day planned! CT results are in .... teensy, tinsy growth but nothing to worry about. The tumor measurements were very close to what they were in March. I'm relieved of course, and sorry that I wasted a week worry after the PET scan. Stable is such a wonderful word in our cancer world. Bestbird, Gail, Justagirl, Carolben, thanks for your concern. Glad I have good news to report!Gail, hope you are breathing better and out of the hospital!Justagirl, how in the world do you manage to take care of such a big piece of property? I begged off yard work when I get the lung mets. Have enough breathing issues without pollen, grass, and all the other allergens out there. I used to do it all but quit cold turkey in 2008! It sounds like you enjoy it very much but for me it was always an obligation. Now I just do things I enjoy doing .... like ball games with the grandsons and Sunday picnics and pool-time with all the grands. Love traveling but also look forward to the next few weeks at home. No big trips planned until September. Will be spending a lot of time with our oldest grandson as his dad (youngest son) is moving to southern California in August so we want them to have as much time together as possible. Youngest son moved out of his apartment a week ago and is staying with us until moving day. Signing off before I lose this. Have a great weekend, everyone!!
Glenna, we're delighted to read your good news too. "Stable" really is a wonderful word!
Glenna, yipee ki yo, I love the word 'stable'. Don't feel you wasted a week with worry. It comes with the diagnosis. To worry a week is better than to worry every day, so give yourself some credit here!
Glenna, if I had family to do things with I might not be so happy alone here doing gardening. And the only place I travel to is back to Kauai where we used to live and that's only once a year. It's only 8 acres, and 6 1/2 of that is paddocks for the horses, which means fencing, slashing and tree trimming. On the garden area I do have one cheat as my husband doesn't do any gardening. I have a guy come in and mow all the lawn area. It takes him just over 3 hours on the ride-on, which is the fastest moving one I have ever seen and then over an hour to do the trimming. I call in a tree service once a year to cut trees that need to be cut higher than I can reach, as I promised the guys I bought the chainsaw from I would never use it while standing on a ladder or hanging from a tree. It's tempting but I'm not that stupid. And I do enjoy it. It's my peace and sanctuary. Some one once told me they did gardening for therapy. Heck, I must require a lot of therapy! I have my dog Jaki and cat Fred who follow me where ever I go so I'm never alone.
I admit I have to pace myself, but not because of the lung mets but my lower back can really kick up and I get terrible pain from the scar where they cut the latissimus dorsi muscle out to help cradle my implant on the boob side that had radiation. So now I only do 2 or 3 hours at a time instead of 4 or 6 and go out more days. My husband is trying to help by hauling all my cuttings and weeds to my compost pile in the paddock and that is really helpful as it's time consuming and a stress on my back.
Wish I could train for another triathlon, but it takes hours a week to train and then I wouldn't have the energy to do things in the house and outside that I want and like to do. Guess those days are over.............
I'm almost 61 and didn't start acreage gardening until I was 40 when I retired from nursing to have my son. Guess we will have to sell up and move to somewhere smaller, land wise, when I can't do what I do. But I try to not think about that.
Anyway, I know you are going to be having a great time these next few days. Go for it!
Glenna - I'm so happy to hear this wonderful news. You've been in my thoughts a lot the past week and I'm so glad your scans and scanxiety are done!
Justagirl - you are one amazing girl! I'm pretty much a couch potato and you've made me feel like an absolute slug! My shortness of breath really keeps me from being as active as I want to be. That's a wicked circle to get into....more exercise would probably help my SOB, but exercise causes SOB pretty quick, so it's not occurring as much as it should. Oh well - Taking the next week off of work for a stay-cation, so maybe I'll get more done in my own great outdoors. You make me want to go out and buy a chainsaw! ;-)
surfdreams, I'm with you, justagirl is making me feel like a slug, too. I always wanted to do a triathalon but the most I ever did was the running part of it. Just can't even imagine all that yard work and tree cutting. Chain saws scare me to death and I don't even want to think about using one. I'm feeling so much better after getting the good results on the CT scan. Still not sleeping but NEED TO since my grandson is here. I know he'll have me up early tomorrow morning. I'm going to need some of that imodium tomorrow, that's for sure. LOL! I also have problems with SOB, going on 5 years now. We downsized to a house that is in an over 55 subdivision and the master bedroom, laundry, and office are all on the main level. The only thing upstairs are the two guest rooms and I only go up there if we're having company and I need to clean and change the beds. Oh, and to get into the attic for Christmas decorations! We lived in a 3 level townhouse before and it was a royal pain. Thanks, mods, for your good wishes! Can't believe you read all our mini novels!
surfdreams and Gleenna: I love my chainsaw. It's such a feeling of power to take off a huge branch or down a tree and then cut it up for firewood or to haul to my compost pile. What I don't like is the weakness I have in my right arm since they took the latissimus dorsi muscle from my back to make a sling for the silicone implant as radiation ate up the muscle and any tissue left after the mastectomy. Sometimes I get Jerry to stand behind me and push my elbow up and hold my arm in a locked position. I'm just no good if I have to lift the chainsaw higher than my head and it's really a push above chest level.
You two have to realize even though I have 100's of lung tumours, the suckers are tiny as pinheads and so far have stayed that way and my breast cancer blood count has dropped from 80 to 26 in 4 months on Tamoxifen after they took me off Femara. I haven't experienced any breathing issues yet and am trying to keep my lungs flexible and pliable and the best way I can think of is to work.
For both of you with breathing issues, simply taking 5 minutes twice a day, or longer if you can, sit comfortably on a chair with a straight back or on the floor, however you are comfortable. Shut your eyes and just breath in. And breath out. After a minute or so start counting how long you breathe in 1, 2,3,4 and out, usually it's shorter 1, 2, 3. This shows we are not exhaling all the old oxygen from our lungs that now has carbon dioxide in it. Work on breathing out as long as you breathe in. Keep eyes shut. Only think of breathing. Once your exhalation (breathing out) is as long as your breathing in, try to breath in for a little longer, like just to 5 or 6. 15 minutes is really great. Think only of your breathing. This will relax you, destress you, and help inflate your lungs to their maximum capacity. Do whatever of this you can. Lungs to me are like muscles and they need to be trained to do what we want them to do. As you do it relax your shoulders, let them drop down and try to pull them back. I don't want to be hunched over and my hubby kindly tells me sometimes I am 'stooping' so try to not.
If you are anxious or tired you tend to take your breathes in short and rapid and exhale even shorter. This can make you light headed and is not to your benefit.
I use this when I get anxious or frustrated at myself, husband or son, and I will tell you, both can push my buttons!
Everyone, enjoy your weekend!
justagirl thanks for the breathing exercises. Sounds just what I need. Had drain out and chemo yesterday so hoping to be discharged today.
Gail: glad your drain is out and the chemo done. Hope you are home by now. What's nice about the breathing exercises is you can do them anywhere, anytime, and it helps even if it's for a few minutes. One of my best places to do it is while I wait every week to see my Dr, which can take up to an hour. I bring a magazine or my Kindle but spend part of the time doing the breathing exercises.
You will be able to easily measure your own progress. It sure can't hurt any of us. For me, it does help to decrease some of the anxiety and tension that builds up in my body and mind, especially my mind. What's also great about the routine is it's simple and even I can remember it!
How's your move going? I don't envy you as I just finished with painters, carpenters and floor layers for three months, dust and boxes everywhere and I had to where a mask if they were here working unless I was shut in my bedroom or outside and a mask too when cleaning up. My hubby was great and did vacuuming and the painters and floor sanding guys were good about it too, but such fine dust on all the shelves, so I wet wiped them down with cheap furniture polish as I couldn't use water on the timber and them polished them with the good stuff. I didn't want to start the project but we have been here 16 years and it was desperately needed. I actually had holes in my carpeting! And paint peeling off the walls of the dining room. Everything just stopped 3 years ago when I was diagnosed with BC and if I don't see to things or do them, nothing gets done. Now am playing catch up.
No wonder I need to do breathing exercises to calm down and destress. The part about pulling your shoulders back and down is important too, as with our shoulders hunched forward, we are restricting the space for our lungs to expand. There is cartilage in between our ribs and it can give a bit too for better breathing but also can tighten up.
Everyone try and have a good day, or if that does work, a good afternoon or evening, and if that fails, go for a good hour!
Thank you. I think I figured out how to add the diagnosis and treatment information. I am still getting used to the site and how to move around it. I am having some trouble, but I will figure it out.
I am so sorry that your treatment wasn't working. I see that a lot of people on this site are on navelbine. Hopefully, that will work better for you. I am going for my appt with my onc on Monday to figure out a plan of action since I have just been diagnosed with mbc. The cancer has spread to my liver and lung. When was your diagnosis?
Great advice on the breathing exercises! It works really well and I can tell the difference I went through OT for lymphadema and the therapist was a proponent of "belly breathing" - should see the stomach rise and fall during breathing. I've always been kind of a shallow breather, and she had me practicing these lying down. It never worked so well as my breathing is more compromised lying down. These exercises you recommend doing while sitting up straight create the good belly breathing. Much appreciated advice.
surfdreams: makes me happy that some of my varied education helps someone.
Years ago, in the 70's I was into yoga and got convinced to train to become a Hatha Yoga instructor. Never really taught much. They also wanted you to lie flat and take a deep breath and think of expanding your belly - I never could understand it as your belly is your stomach and your lungs are above. If you breathe in and poof your belly out, it does zero for your lungs.
Working as a RN in ICU I even taught this to our patients who had had a heart attack, and along with a little valium, was able to get them to relax a bit even though they were in a strange bed in an ICU, and thinking they were about to die at any time. And I used it for myself when things got stressful like a code, but sure didn't count, or had to work 24 hour shifts.
There is also a little device you can purchase at your drug store, here they are $35, which measures your lung capacity. It's a way of seeing how you are going. It's about the size of a toilet paper cardboard, you put your mouth around the end after taking in a deep breath and then firmly suck on the end and breath out. It's called a spirometer. You know, I don't even know what good or average is as a score anymore, but each one of us is different in where we are with our lungs. It will measure improvements in your breathing or declines.
Let's just hope for improvements! The sun is out here and I'm going out for some gardening. It's chilly so I'll dress up eskimo style.
As the saying goes 'Carpe Diem' - seize the day, and I will!
Have a lovely weekend everyone..........
And no one breathes as well lying down as sitting up!
I thought of doing this as it's easy to remember, can be done anywhere, for any length of time - which is always beneficial, and you can easily see how you are progressing.
Also, if we are calm, and here is me talking about being calm and I take anti-anxiety medications, it helps makes the breathing easier. And works to keep the lungs flexible. We all need our lungs to do as much as we can for us!
With your eyes shut, which I don't do when I'm like sitting in the doctor's office, I just focus on something like the wall or floor and it works just as well. They might cart me off to the nut house if I start shutting my eyes in the doctors waiting room!
A quickie tonight. Justagirl, I copied and pasted your breathing exercises and will print them tomorrow. I am definitely going to give it a try. I need all the help I can get!! Moving, yikes, never again. Last move was 5 years ago and I haven't gotten over it yet!! Happy weekend!
Glenna, yay!!! So happy for your good news. Does this mean you are now in remission? I get confused about what remission is, exactly - a period when the cancer is not visibly active? I also make myself crazy before tests, scans etc - am already thinking about the scan I'll have at the end of August.
Wow, Justagirl, you sound like the little energizer bunny!! I so get what you mean about getting the chemo look. Loosing my hair for the 2nd time was horrible, getting that pale, tired look - yuck! But it is what it is - I used to always keep my head covered when I went out, I didn't want to make others uncomfortable (at least that was my reasoning) Till I realised that was ridiculous, I am having chemo and am bald, and I'm worrying about it making someone else uncomfortable!!?? I think it was me feeling uncomfortable really, and now I just don't really care much. You get looks, either sympathy, or just interest, but so what. The weather has always affected me - there's something called SAD (Seasonal Attitudinal Disorder), google it - so I try and have lots of light where I live and spend lots of time outside in the sun - our winter sun is lovely and gentle. I have "numerous" nodules in both lungs and also don't have any symptoms. I do get short of breath, but am not sure if that's a SE of Taxol. Walking and doing yoga dont make me SOB, so that's what I do. But have been so tired, that I've not done that much walking lately! I'm glad your hubby is helping you out around the house etc - it probably does him good, cos it's a way he CAN help you. I started the breathing to control my anxiety - works like a charm. Now I try to do it often during the day. I also feel that I need to keep my lungs active and can also hunch over - kind of like a protection of my breast that's no longer there and my lungs. My sister said to put my shoulders down and back and let the light in my heart shine up and out. I love that!!
@#** disease can understand what you are going through. That in itself is a comfort to me. I don't have to explain myself and then get blank looks. Browse around, and it will start making sense - I've never been part of anything like this on the net, and it's really user friendly!
Gail - shoot, sorry you had to go back to hospital, hope they have drained all the fluid and you are home, or will be soon! I had a scan after the first 3 months of Taxol (3 weeks on, 1 week off). And it showed that all my nodules had shrunk to different degrees - am really hoping it'll do the trick for you and give you a break!!
I had a lower dose of Taxol last week cos my wbc dropped a lot, and felt much better for it - not so much like I've been hit by a bus! This is my week off, and I'm sure the blood will be good again for next week's chemo - only 3 more left and I am so wanting to get it all done already!! Then another scan 3 weeks after the last chemo. I write that and my stomach just clenches right up, so I try not to think of the scan now.
I read somewhere that anyone who has migraines, Taxol makes them come more often? I have been having 1 or 2 a week lately!!!
Am so looking forward to summer and being able to swim again - swimming is also great for the lungs, plus it's like a moving meditation - you concentrate on the breath and kind of get into a zone, at least I do!
Surfdreams & Glenna, don't feel bad for feeling like couch potatoes - I reckon there is a time for that - I've been doing a lot of that and not feeling guilty about it. I'm having chemo, am so tired I feel like there are weights on my shoulders, so if I move between my chair outside, my chair inside and my bed, so be it, give my body time to rest and not stress. When I finish chemo, then that will be the time to start doing more, as my body recovers. I'm not pushing things right now.
Carolben, I'll try to explain this as I understand it .... if I'm wrong, I'm sure someone will come along and help me out. We can be stable, which is what I am. That just means no growth and no spread of the cancer. It is staying contained but it is still there, so no, not in remission. We call it having a relationship with the stable boy or dancing with the stable boy in our humourous moments. We are happy to be stable! NED is no evidence of disease. I was NED once, I think when I was on taxotere, but the SE's were devastating and I had to stop. NED means no evidence of disease ... CT's can find no cancer. It doesn't mean we're home free because all of us who have stage IV understand that we can build resistance to a chemo and have to start something new which may not be as effective .... then growth may begin again. We're not home free. I know of some women who have been NED for long periods of time. Then there is Progression ... we don't want to see that. It means the tumor/s are growing or new tumors are appearing elsewhere. This usually means a change in the treatment plan. So, we are very happy to be NED, happy enough to be stable, and not so happy when there is progression. Please, anyone who wants to add to this or clarify/correct any of my statements, please do so! Had chemo today and have been up all night on my decadron high. Got lots done on the computer. Organizing my thousands of pictures and backing up on portable hard drives.Gail, back in the hospital? Hope you get things under control and back out soon!!Have a great weekend, everyone!
Thanks for the info, Glenna, that makes it much clearer to me! Love the 'dancing with the stable boy'. We seem to double threading here a bit!
It's hard cos there will never really be the end of treatment, will there? The best we can hope for is chemo vacations, hopefully long ones, with some good qol!
Hope you are not too crazy after pulling an all nighter - I manage to sleep till midnight or soon after, on the 2 nights following the steroids and cortisone, then maybe nap on and off till morning. I think if I pulled an all nighter it'd undo me - my head would burst! Then as soon as the stuff wears off 2 days later I crash for a day or 2, then start feeling better. The Taxol hasn't been that bad, just a couple of rough spots in all, so that's been a blessing.
Glenna, wow, impressive job in explaining our life situation.
And as you Carolben say, there will never be an end of treatment as long as we are........ (can't say it). Yes, hoping for breaks from having chemo or if one oral drug quits working another one starts working. Glad the Taxol isn't giving you too rough of a time.
It's a state of constant unknowing how we will be even three months from now. Right now it's driving me crazy. I know that's why I'm crying all of a sudden and feeling fragile and insecure. I feel panicky, a touch depressed (could be lack of sun and all this darn rain too). I need to be outside in my garden with the sun shining and my Jaki and cat Fred.
Have had a few times in the past week when all of a sudden I start crying. I was doing good at hiding it from my husband but he caught me the other day and asked what was wrong and I said I didn't know. By the look on his face I knew I had said enough. He think's I'm crazy. Heck, it makes you crazy having to take these drugs and living from doctor visit to doctor visit or CT to CT. I hate hate hate having even the breast cancer tumour count blood test as my veins are shot from the chemo as the Dr said I didn't need a port. Last time they drew blood I got 5 jabs and it was me who did the 5th one which worked. They called my Dr first and she said to let me do it. See, then I felt in control.
I don't feel in control with these lung mets. I can't do anything to keep them stable or shrink them - just keep taking my Tamoxifen which gives me roaring migraines.
I've just realized it was almost 6 months ago (Jan 21) that I found out about the lung mets. Maybe that is what this is all about. I'm on an anti anxiety medication and my GP said I could take an extra one when feeling anxious but it's not anxiety I feel. Plus I want to decrease my dose so when I get hit with some bad news I can take some and not go higher in the dosage.
I'm going to start tomorrow and get back into exercising, weather or no weather and got in a couple of hours today outside and even that helped.
Hope you Carolben and Glenna get some good quality sleep - me three!
What a way to live our lives, but we are alive and I need to remember that and be thankful.
And stop crying!