Fill Out Your Profile to share more about you. Learn more...

mets to lung

Options
1356788

Comments

  • justagirl
    justagirl Member Posts: 633
    edited May 2013
    Options

    Sherry - no thanks required

    . We are all together in this and have to stick together and support each other. No one really 'gets' what we are dealing with but us.

    And right now you are dealing with a lot. Lung pain, starting a new chemo drug with high hopes, having a joke for an oncologist without an ounce of empathy and wondering. Wondering and hoping this new drug will help and shrink the tumours or prevent new ones, wondering what will happen if the drug doesn't work. I hope you have family and/or dear friends with you.

    Wondering about your destiny. 

    I'm always here. Will check in daily. You can also PM me any time you want.

    As ever,

    Debbie (and by the way, I'm still mad at these lung mets. How dare they!)

  • Reality
    Reality Member Posts: 532
    edited May 2013
    Options

    Dear Debbie - I am so fortunate to have a wonderful, supportive family. My family is small, so we are all very close. Two of my adult children live in my town. One of my best friends - my ex dil, lives one mile from me! My middle son lives in CO, but texts or call every day. The very best part is that my three, very loving grandchildren  spend time with me at least six days a week. They often take turns spending the night with me. I hope that you also have a supportive family. (I agree - How dare they?? Darn mets anyway!)

    with appreciation,

    Sherry

  • justagirl
    justagirl Member Posts: 633
    edited May 2013
    Options

    Sherry, what a lovely and loving family you have and it doesn't seem small to me at all. It kind of tells me the kind of person you are that your ex dil is one of your best friends. Sometimes it seems children grow up, have their families and only see a parent on a holiday and rarely telephone or text. You have it all - perfect! And the fact that your grandchildren are a constant in your life must bring you so much joy.

    We are a small family. My husband was an only child. His mother had a brother and sisters so there are cousins, but they live in Texas, Chicago, New Jersey and once my husband graduated university, he wasn't back much. My husbands mother was really a cold unhappy person and for both my husband - Jerry and I, it was a challenge to be around her or even talk with her. When I met Jerry he was living in southern California and he called his parents twice a week in New Jersey and sent them a cheque every month as they only had their social security. After we got married I got the chequebook and the mother. Sent a cheque first off every month before anything else was paid. I always increased the amount when I got a raise at work. Figured they needed it too. Anyway, I digress. So Jerry parents have been deceased since 1983. My parents died also - Mom when I was 10 and Dad when I was 18. I have three half brothers and only have a limited relationship with the oldest, who is 74, 14 years older than me.

    We didn't have our son, Max,  until I was 41 and Jerry was 60. I have one dear friend on Kauai, where we lived for 12 years and a BFF there, also, both I have know for 25 years. And a BFF here, who is the one who mainly keeps me sane and explains why my son does the things he does at 19. Her two children are 22 and 27, so she has been there. She never has had cancer, but seems to 'get' what I am going though and is an immense comfort to me. My BFF on Kauai, well, she just has to call (we talk weekly or more) and I answer and say 'hi' and she can tell if I am upset and will say 'what's wrong' - that's being tuned in!

    I have a 16 year old ginger cat, Fred, who follows me around as I garden or sleeps all day. My 7 year old collie cross Australian blue heeler is the love of my life - Jaki. Many tears over this cancer crap have dampened her fur. She just hears me start bawling and is there by my side, licking my tears as fast as she can. When I need comfort I hold her closely and just put my face into her fur. You know, can't always be down in front of hubby or son. Especially my son. This has been rough on him. Guess we had all believed if one of us was to get sick, it would be Jerry as he is 18 years older than me, but it's been me since the initial breast cancer in March 2010. I did it all, lumpectomy, corrective surgery on the lumpectomy for cosmetic reasons which the surgeon wanted, a breast reduction of the other breast to even the size out, then a double mastectomy with reconstruction and lastly, a tightening of the latissimus dorsi flap they did. Oh, and chemo and radiation and was on Femara. I thought I did it all right and it was over with.

    Guess the joke was on me.

    Anyway, we both are lucky in respect to our loved ones. That's one good thing! Had to be something in all of this!

    I got to go out and garden today. We have been having bursts of rain and I am eager to get about 50 plants in I bought but had to clean and weed the area first. Finished that today, so now the fun starts! Seems like none of my garden projects are one hour in and out jobs but I do enjoy being outside. Jaki is always with me and often Fred tags along, afraid of missing something.

    Today Jaki got Buddy (horse) riled up and next I know Jaki is chasing Buddy up the paddock and Buddy is running so fast I thought if I had been on him I would of been off quick. Up and down the paddock Buddy blazed for about 25 minutes. Funny because Jaki can't keep up so ends up sitting there and watching Buddy with me.

    Winter is almost here. I've had my flu shot as a preventative and my GP wants me to have the pneumonia vaccine but I know about 75% of the people who get this vaccine are really sick for about a week and their arm where the stuff goes in swells up and hurts like fire. Jerry had one when he turned 65 and said never again. I understand my Dr's reasoning and would be more pro if I was around a lot of people closely, but I stay on the property alone mostly and only go to the Dr's or grocery store or a bit of shopping. Oh, and the hardware store - I like it there!

    Ok - another day, I hope for a good nights sleep. Not easy for me.

    Hope your breathing is less painful -

    Goodnight,

    Debbie

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited May 2013
    Options

    I was diagnosed with lung mets last May.  After doing Xeloda, Carboplatin and a clinical trial drug, Gemzar has been my magic bullet.  My lung mets were all resolved according to my PET/CT in late April.  Two weeks on, one week off, half strength chemo (full strength killed my red blood cells and my tumor markers have dropped from 1850 to about 275.  But it has worked.

    Don't give up hope!!!

  • justagirl
    justagirl Member Posts: 633
    edited May 2013
    Options

    Yeah for Gemzar LuvRVing! Resolution of lung mets sounds lovely.

    And what a significant drop in  your tumour markers! It's hopeful to hear news like this for a newbie like me

    . I'm only on my 2nd drug, so hoping there is an arsenal available for me to fight this, along with trying to just 'think ' it away!

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2013
    Options

    My doc keeps telling me there is an arsenal. Reality, can you get another opinion or find another onc? Seems like there should be other options if the xeloda doesn't work. Have you checked into clinical trials? I loved hearing about your supportive family .... What a blessing for you!

  • justagirl
    justagirl Member Posts: 633
    edited May 2013
    Options

    Glenna: I really am encouraged that your oncologist said there was an 'arsenal'. 

    I've been in one of my funks the last couple of days, early, as my next tests and CT aren't for two weeks, but I'm already getting anxious. I feel fine, my breathing is fine, but my mind is whirling 1000 miles an hour and it actually hurts my head. Ok enough of my craziness.

  • Carolben
    Carolben Member Posts: 265
    edited May 2013
    Options

    The met-meisters, I love it!!  Gee, Sherry, I'm so sorry to hear what you're going through?  You don't sound like you are ready to give up yet.  Have you thought of getting a second opinion - can you do that?  I agree with Debbie - get all the pain meds you need - as strong as you need - you seriously don't need to suffer with pain, just gotta tell them you need stronger meds or whatever.  Lesions growing and running out of chemo options is NOT something you do on the phone, sorry!!  But we know that this can happen to any of us, and I'm sorry it's happening to you, and it's my deepest fear too.  But hey, we won't die till we die!  I've learned to be a bit more assertive in stating my needs, in knowing that I have to make the final decisions about tx and stopping chemo.  Till then I get copies of everything - even all my blood tests! 

    I have good news - my scan showed shrinkage of nodules - 8mm to 4mm (!!) and some 6mm to 4mm and the little ones not visible anymore.  I know a ct scan can't detect anything under 3mm, but hey, I'm just so grateful to know the Taxol is working - it was getting very dark in my head and I feel like the light's been switched on again, there is hope again.  So 3 more months of Taxol and we'll see what the story is then.

    I'm full on with the anti anxiety meds, Debbie - my shrink prescribed them at the dx and I sleep at night (except when full of steroids) and I can work with any anxiety better now, lots of deep breathing helps too!  I also take anti depressants, but have done for many years.  I'll take all the help I can get -  as you say, there is so much in the way of treatment and meds that is available, we should make full use of that.

    When I asked my onc how much time do I have he said honestly he can't tell me, I'm 3- and it either spread really quickly - (3 months after finishing the initial treatment), or it was always there and was already in my bloodstream somehow as no nodes were affected.  So he says that they measure in days, weeks, months and years and I can look at many months or even years - YIKES, what on earth is he talking about?!  I'm not symptomatic, no pain, no mad coughing.  I do get shortness of breath, but it's just here and there, and I think it's a se from the chemo.  And you talk about months??  No way!  I'm like you, Tree, not feeling particularly bad from treatment - fatigue gets me, but nausea is only 1 day and totally controlled by meds.  I'm up and about, doing the chemo, go to yoga once or twice a week, walk on the beach, have coffee with friends.  I do have a lie down and nap every afternoon for an hour or so.  But I'm enjoying my life and I know this cancer is going to get me, but not yet!!!  And until it does I'm doing stuff that makes me feel good.  Spending more time with loved ones, being more aware of the beauty of nature and how many really kind people there are, feeling the connection.  I'm planning a trip to my son in Israel in September, and I'm am for sure going to do that!!

    But I also have been putting all my affairs in order, giving my big sister signing powers on my accounts and medical stuff, living will, will, etc etc, so I'm not in a state of denial.  Hey I just got great news, and I know that maybe I'll be in remission, who knows how long till it starts up somewhere else, and sometimes I also imagine these little monsters in my bloodstream, lurking in organs and bones, ready to start growing, again and again, and it's like a war and you run out of ammunition.  But I'm going to enjoy the injection of hope and just allow myself to be happy right now. 

    I have no power over what is going on in my body, except to do the tx and look after myself, but I do have control over my attitude, and it's not easy to get to the point where I can make that attitude shift from negative to positive, or at least to a place of acceptance.  And it's something I have to try to do over and over again.  And when the sadness, anger and the fear come I acknowledge them, and try to speak to someone or just let it all out here, where you know they'll get you, and just try not to get attached to the fear, anger, sadness and stuck there.  But it's hard.

  • sarahlou1967
    sarahlou1967 Member Posts: 28
    edited May 2013
    Options

    Hi all,
    Apologies in advance but I'm well and truly peed off! on top of everything else I now have Shingles, thought I'd been bitten by something so left it and now its all over my left handside of my torso (my good side) and belly, really annoying and like I said on top of everything else (I have secondaries on both lungs) this is the final straw. I've been really good for the past two years every single day I fresh juice green organic veg and fruit, I take a load of good quality supplements and thought I was winning and that my immune system was on top again, apparently not apparently its on the floor hence the reason why I got shingles. Sometimes I wonder why I'm bothering to fight and take all the treatments, why I just don't let nature take its course, sorry everyone but I am really down and I believe its the shingles making me so low. Anyone else had shingles?? love to you all sarah xx

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited May 2013
    Options

    So sorry to here that sarahlou! I had shingles several years ago before BC on my right side armpit and breast ouch! ER doc said it was triggered by stress....got the rx for pills and ointment and was lucky it took about 3 weeks to clear up. Keep up the good fight! Xoxox Jo

  • Latte
    Latte Member Posts: 141
    edited May 2013
    Options

    Hi Sarah

    I also just got over shingles - it was terribly painful and it made me delay joining a clinical trial. It took two weeks for the pain to go and another week to finish clearing up. You have my sympathy, feel good soon!!

  • sarahlou1967
    sarahlou1967 Member Posts: 28
    edited May 2013
    Options

    Hi Latte and Jo,

    Thanks for responding to my post and sorry to hear that you've both had to suffer shingles, thank you for sharing with me, I don't feel so alone in my pain. love and light to you sarah xx

  • svetik
    svetik Member Posts: 12
    edited May 2013
    Options

    I also had shingles on my back at the end of the taxofere treatment. Also gave me a high fever. I had to go to emergency, got antibiotics IV infusion. If I remember correctly, it took me about two weeks to get better. Hang in there, Sarah! 

  • JTilCT
    JTilCT Member Posts: 5
    edited May 2013
    Options

    Ladies, I am scared and pissed off too.  The ups and downs are so drastic!  I was diagnosed in July '12 with lung mets and the onc. talked in terms of months.  Chemo worked great, shrunk those things down to almost nothing.  Just had a CT scan last week and they have grown.  When things are going well, I feel invincible (big high).  But now that treatment isn't working as well, I want to scream "WTF!!!!!!!" (big low).

    My onc. is big on quality of life, he asked, "How do you feel?"  I feel great!  So he does not want to throw chemo at me again- we'll save that in case I start to have issues breathing again (coughing, shortness of breath).  Will try Xeloda see if that works.  I would like to squeeze as many years out of this as I can- I am not ready to go!

    p.s. I need to update my pic.  My hair looks fabulous and the onc. says I can keep the hair on Xeloda!Wink

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2013
    Options

    I'm feeling lucky to have never had shingles ... Sucks to have to deal with that on top of mets. Sarah, hope yours is cleared up soon. Yeah, the ups and downs can get tiring. I'm celebrating 5 years this month .... I thought when I was diagnosed that I'd be lucky to live a year or two. I'll tell you, I'm cramming as much living into my days between chemo as I can. Not knowing when things will turn south makes me eager to go, go, go. Last scan was good, no progression, so good til next scan. Hang in there, my friends, some treatments work. Some don't. You just have to keep trying til you find your magic bullet!

  • beatez
    beatez Member Posts: 1
    edited May 2013
    Options

    I have had lung mets. Arimidex got rid of them, but now - two hormone blockers later, now on Aromisan  -  the mets are in the bones. Meanwhile I want to share with you something which I do parallel to what the onc. prescribes - a diet which is supposed the starve the cancer (a diet! - not a fast) . If it interests you, click the link http://toibillboard.info/keto.htm

  • justagirl
    justagirl Member Posts: 633
    edited May 2013
    Options

    Good news: just got the results of my tests: blood breast cancer tumour count 26 (less than 30 is normal) and the CT on lungs showed no increase in size of number of mets (heck, there is 100's of them already!). Guess I get to stay on Tamoxifen and avoid chemo until the next set of tests.

    I am floating on clouds!  Happiest as a person can be with BC Stage lV lung mets! The Tamoxifen is working.

  • justagirl
    justagirl Member Posts: 633
    edited May 2013
    Options

    bump bump

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2013
    Options

    Justagirl ..., congrats on your good news. So glad the tamoxifen is working!

  • justagirl
    justagirl Member Posts: 633
    edited May 2013
    Options

    Thank you Glenna. I think it's working but will see what the oncologist says next week. I can always get my GP to give me the results as soon as they come in as she knows it will decrease my anxiety. I wish the number of tumours had decreased but I am still hopeful that can happen too. You know, when I first found out about the lung mets in January, I just said 'ok, give me chemo'. I wanted to knock those suckers out but the oncologist was firm to just try changing from Femara to Tamoxifen to see if it made a difference and it did. I thought the two drugs were very very similar?

     Any thoughts? I'm open to being educated.

    How are you going Glenna?  You are an inspiration for me to keep on going and enjoying life and trying to do what I can to help myself.

  • GatorGal
    GatorGal Member Posts: 750
    edited May 2013
    Options

    My oncologist insisted on the AI's at first as well. Much less toxic. He said "let's save the big guns for when we really need them." Can't remember right now which ones i tried but i did get some time out of arimidex, tamoxifen and femara. i think you're right in that they are all similar. I think they are estrogen blockers. All in all, I'm glad that was the route I took. It saved me from a couple of years on chemo and all the SE's that go along with it. I've got all kinds of plans this summer and hope I can do them all! Starting out this weekend at the beach with DH and grandson. One of the mids we sponsored when she was at the naval academy is driving up from Norfolk with her two little girls to join us. I haven't seen her in years so really looking forward to our visit.



    June 15-22 back at the beach with my sister, her 3 granddaughters, my grandson, and a niece. My son and his family will join us for a couple of days. Then sister and all the girls are heading to Niagra falls and Stratford Ontario. We will see Romeo and Juliet at the Shakespeare festival. As soon as I get home from that a good friend from high school is coming for a short visit. In July heading to finger lakes region of New York for a wine fest. Mind you, this is while getting chemo 3 Wednesdays of every 4!! My slogan is "have immodium, will travel." After the wine trip I think I will relax a bit!!



    For me, it's all about living life to the fullest. Retiring was the best thing I could've done!!



    Justagirl, let us know what your onc says next week!!

  • carpe_diem
    carpe_diem Member Posts: 599
    edited May 2013
    Options

    Arimidex and femara are similar in the way they act, but tamoxifen, which has been around a lot longer, is different. Both Arimidex and tamoxifen work by exerting an effect on estrogen, which feeds the majority of breast cancers and helps them grow. Arimidex belongs to a class of drugs called aromatase inhibitors, which limit the amount of estrogen the body produces in postmenopausal women. Arimidex works by preventing the conversion of steroids made by the adrenal gland into estrogen. 

    In a woman who has gone through menopause, the adrenal gland is the largest source of estrogen. Arimidex doesn't work in women who are premenopausal because their ovaries make most of their estrogen. 

    Tamoxifen belongs to a class of drugs called selective estrogen receptor modulators (SERMs), which work by blocking estrogen from binding to its receptors in the breast. This drug works as well in both premenopausal and postmenopausal women, but the AIs (aromatase inhibitors like arimidex and femara) seem to be more effective, but can lead to reduced bone density.  For post-menopausal metastatic women, taking arimidex first and then switching to tamoxiphen resulted in longer survival than starting with tamoxifen and then switching to arimidex.

    I've been on arimidex for 27 months, since being diagnosed with lung mets, and the mets were greatly reduced until my last PET/CT.  That showed increased activity in a new area, but I have no symptoms and my tumor markers are stable at about 38 for CA 27-29.  My mo is considering a switch to faslodex, which targets and degrades the estrogen receptors present in breast cancer cells, but we're waiting (nervously on my part) for another PET/CT in August, in the hopes that the last one was just showing lingering effects of radiation, which I finished in March.

  • justagirl
    justagirl Member Posts: 633
    edited June 2013
    Options

    Glenna, I do understand now that jumping in with chemo would of been a bit premature, as I have to try the gentler stuff first, and use it until it's not doing the job, and then try something else. I do realize this is going to be with me for the rest of my life, but it's still a shocker that I will be on some kind of anti-estrogen or chemo med forever, when I thought I had just two years to go.

    Wow Glenna, you are a go getter, chemo and galavanting everywhere and visiting up a storm. All your summer plans sound wonderful and I can't wait to hear about your adventures. We are going into winter here and I have just finished with having the whole inside of our 3 story home painted, refloored on the main level and carpeted upstairs in the bedrooms and my junk room. My hubby today spent a couple of hours vacuuming so I wouldn't have to do it as the masks make my face itch and there is dust everywhere. We are both careful to 'wet' dust the furniture and fixtures to keep it from flying but I am wearing a mask so much that last night when I put my night cream on it burned my facial skin. Still have lots to clean up as far as shelves and little areas and lots to get back out of boxes but it already is looking like home again. This three months has been rough on me as I due like my peace and privacy so for me I'm hoping for a quiet winter with some sunny days so I can garden too.  Will let you know what oncologist has to say.

    carpe diem: thanks for the education. I am a nurse but did ICU nursing so the chemo drugs and anti-estrogen drugs were unfamiliar to me when I got into this.  I started on Femara and was on it 2 1/2 years until we found the lung mets, so the switch to Tamoxifen. I was disappointed the Femara hadn't prevented the mets but my original tumour was a grade 3 invasive and aggressive, and even with my SNB negative, I knew there was a more likely chance for me to get mets than if the tumour hadn't been invasive. I was 57 when I was started on Femara, so very post-menopausal.

    What I find interesting is when I was first diagnosed, no one ordered a CT of my chest/lungs, as the breast tumour was resting right on my sternum and the breast surgeon said she had to shave off a bit of my sternum to get a clean margin - which she barely accomplished but luckily did succeed at. But, as we all know, BC likes to go to bones, lungs and liver first. I still can't figure out why as if the bc cells are in my bloodstream why would they mainly go to those three places first?  oh well, guess it dosen't matter now.

    Carpe Diem: I sure can understand your anxiety since receiving the PET/CT results the last time, and I will be hoping for you that your August testing is improved.  I have heard of women taking faslodex, with good results and minimal side effects, but hoping you won't have to.

    My oncologist said I couldn't have radiation on my lungs as these tiny tumours are in the 100's and are all over my lungs and I was shocked when I saw the CT. Seemed she was shocked I have no breathing problems and register 98% on a oxygen machine. I do seem to tire more easily, but I have been busy with the house remodeling but still can run and walk up and down the two flights of stairs in our home too many times to count in a day. She said it wouldn't be worth it to just radiate one area. She said if I had only one or two tumours they could radiate them, but .... And she said they could remove them if they were of any size, but they aren't. Too bad they can't just stick a vacuum in there, turn it on high and suck them all out!....just pluck them off the walls of my lungs in one swoop. Ah, a gal can dream.....

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2013
    Options

    Carpe diem - thanks for refreshing my memory on the differences between arimidex, tamoxifen and femara. I knew that but forgot. How many times do those of us with chemo brain have to say that? LOL!



    Justagirl, sounds like you have been a busy lady. Glad you are finished with the home improvements and can get your house back to normal. My onc said no to surgery to remove the tumors from my lungs and radiation, too. I do have breathing problems and do most everything at a slower pace than I used to. Just glad I can keep going and that the chemo is keeping me stable.

  • justagirl
    justagirl Member Posts: 633
    edited June 2013
    Options

    Seems like I haven't been able to get up to the energy level I was at prior to the lung mets diagnosis, but I think it's all in my head, not my lungs. Or maybe the tumours are keeping me just a little tired but my last O2 saturation levels at my GP's was 98% which is normal.  I think my mind is still getting around the fact I have mets - kind of a shock thing. I think it's good my Dr had me on anti-anxiety medication or I would of been under the covers again, like I was with the breast cancer diagnosis, and that lasted way too long and wasted way too much of my life. At least I get up every day and do things, maybe not as many things, but there are days when I don't stop from 8am until I sit down to eat dinner and then I'm folding laundry after dinner.

    Glenna, I am thrilled the chemo is keeping you stable so you can keep doing what you want to do. When we don't have the option of radiation or surgery, that only leaves drugs. I need to get back into using my treadmill, got out of the habit with the renovations, as using it 4 or 5 times a week and really forcing air in and out of my lungs sounds like a good idea to me to keep things moving.

    I just wish some days, like today, while writing this, the tears wouldn't fall so easily. I hate hate hate breast cancer and how it has affected so many wonderful lives. My husband likes to tell me nothing is wrong with me, but then why do I have to see the oncologist for a three month visit to discuss exam results in two days? I still get afraid and wish I could conquer my fear.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2013
    Options

    Debbie,

    We all truly understand where your head is at. This diagnosis is life altering, and there is no getting away from it. Your tears are a true reflection of what you are feeling, with good cause.

    Your husband seems to have fallen victim to "If I say it often enough, it will become true" syndrome when he states there is nothing wrong with you. Sadly, there is. How does he react when you talk about your cancer with him?

    Can you conquer fear? I've tried, with little success. However, I am Super Good at distracting myself from the fear. It's my patented Puppy-Time Maneuver. I get the dogs to nap and play with me. They are so goofy and loving, I can put the fear in a box for a bit. Oh, and meds too. Love the meds.

    I went through the AIDS crisis in the 80's (I was an actor before momhood), and lost too many friends. I try to remind myself that I am luckier than they were. I had a good friend die from an aortic dissection when he was out jogging. They are my litany. I may have less time than I wanted, but more then they got. This is my feeble attempt at gratitude.

    Heavy sigh. I'm still talking about me, aren't I? I hope you have more good days than bad, and that your visit with the Onc is a good one. Let us know how it goes.

    Cyber-hugs,
    Jennifer

  • justagirl
    justagirl Member Posts: 633
    edited June 2013
    Options

    Jennifer, you are so right about my husband (or I think so as he doesn't talk a lot about my cancer). He sees now that I am as healthy as I ever was, maybe a little easier to tire, and thinks nothing is wrong with me. He is scared, he is scared for me, our son to not have his Mum and for him, at 79 to even think his wife of 30 years who is 20 years younger than him, and was doing triathlons until BC came into my life, might die before him. I think he hasn't been afraid to age as he knows I will always take care of him, whatever that is. And now it might be the reverse.

    That's why I fight so hard, for normalacy: we three need it. I know I have lung mets, but as long as they don't bother me, I try and not let them get into my mind, but it does happen and then the tears flow out of me.  My husband doesn't like to talk about my cancer and it's interesting that the first round with BC, he never went with me into one appointment, even when I was told I had BC, and never walked into a hospital with me for my 5 operations. He would always drop me off outside and pick me up. He hates illness and hospitals. Since I am a RN, I think little of it.

    I can understand Jennifer, your gratitude at having a chance more than the early '80s AIDS victims had but it's still you, and your family and me, and my family it's affecting.

    The visit yesterday with oncologist was good. She was happy the tumour count was down from 56 to 26 and there was no change on  on CT lungs. No increase in tumour size and no more tumours. Considering there is already 100's of tiny little ones, that sounded good to me. She had hoped some the tumours would of gone, but is hopeful it still can happen. And as long as I remain 'asymptomatic' we are both happy. I don't like the side effects of Tamoxifen but she said after that there is only one other oral drug for me to try and then chemo. I said wouldn't chemo wipe them all out and she said no, only shrink them.  And I don't have to repeat the CA15.3 for 3 months and unless the tumour count is up from where it is now, no lung CT.

    So, all in all, a good day for a person with lung mets.

    Last night we went out to dinner with a couple of our friends, close friends, and as we sat there, having fun, good conversation and great food, I thought, they have no idea how wonderful being able to go out to dinner and enjoy myself is. Such simple things make me happy.  Even to go to bed after putting clean sheets on my bed!

    I do have more good days than bad but my Dr was concerned about the number and how bad my migraines have gotten on Tamoxifen but the oncologist said it was due to the T. and just take whatever I had to to get rid of the migraines. So I feel a bit of relief now - like I have a 3 month reprieve!

    I am hoping we all have more good days than bad, as you said Jennifer, but don't think I could do it without my anti-anxiety pills.......

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2013
    Options

    Debbie,

    Glad you had a good visit with your oncologist. Stable is something to celebrate!! And hey, I don't think any of us could do this without the anti-anxiety pills. I know I'd never sleep at night without them!!

    Hope you can keep those migraines under control!!

    Glenna

  • justagirl
    justagirl Member Posts: 633
    edited June 2013
    Options

    Thanks Glenna. A little bit of my anxiety goes away for now, but I don't dare stop taking my anti-anxiety pills. I just get worried about what will I be like in a year, or two, or three. Can't stop my brain from doing that. I was told to live in today and I try but it's easier said than done. I do appreciate each day and celebrate having it but it doesn't take my anxiety away but allows me to enjoy life most of the time. I still have my down times, but it's no longer all day long or me under the bedcovers until noon! Guess I am just a wimp.

    The oncologist said anyone with migraines prior to taking Tamoxifen will  have an increase in the severity and frequency of them. Oh goody. I think my GP was getting concerned about the amount of pain meds I take when I get one, but when they last 2 or 3 days, I need the meds and I take anti-nausea meds so I don't get dehydrated. Years ago, when I still had periods, every month when that time came I would get a whopper of a Migraine and end up in the hospital with 4 hourly pain injections and an IV drip to rehydrate myself. So, I feel as long as I can stay out of the hospital, I'm winning. Not this lady GP, but my previous GP who owns the practice (he used to be my Dr and when it started taking two weeks to get an appointment he suggested I try Dr Eve who I love), anyway Dr David just lives 5 minutes from me and will come to the house anytime after office hours to medicate me, weekends and holidays too. There aren't too many of those kinds of Dr's left. If Jerry, my husband, has to call him, I always afterward buy him a nice $100 bottle of champagne as he never even charges me. Last time I handed it to his wife, who is a RN in the office and told her'  thank you too' and she said 'what for' and I said for not getting mad because sometimes I took David away from her on his home time. I do appreciate both of them. One time he was on the other side of Australia and when I called his cell phone and he answered he said he would call his wife to come over and give me an injection as his medical bag was at home. So nice to get strong medication and get to stay in my own bed!  The ER's here won't medicate anyone for a migraine as they think you are just 'seeking' drugs and hitting up all the hospitals...next nearest ER is 45 minutes away. I've told them to pull my file and see the last time I was in but they won't do it. The one time I was so sick I said just admit me and they said the hospital was full but I was dehydrated and hurt so bad I would of laid anywhere. Well, I called my Dr David on his cell phone (he was on vacation! skiing) and he told the ER Dr to medicate me and put in an IV and give me a litre of normal saline fast and send me home. Thank heaven that David never turns his cell phone off. And if he does, which has happened by accident, I have his wife's cell number, and their home number.

    Whew - sorry to be so long winded but I just wanted to give Dr David and his wife Jan credit and my lovely GP as she sees me anytime I need her, which like the other day I didn't have an appointment and it was the end of the day and she waited at the office to medicate me. I'm so lucky, and even the receptionists are lovely.

    Just got pneumonia vaccine today. It's supposed to make my arm swell up, make me feel like I have the flu and run a temp but my GP thought that better than exposing my lungs to a bad pneumonia that also could be life threatening.  So I came home and hurried up and did the sheets on the bed and other things in case I don't feel well the next few days.

    Do any of you feel good for days at a time, then when you shut out the light to go to sleep, just start crying? I do this sometimes. I used to do it every night for about 6 months after I first got BC.  I think it sometimes 'gets' to me that these lung mets and whatever else I get (but I hope nothing) will be with me forever....and to me forever is supposed to mean a long, long time!

    I wish us all the strength to enjoy this day we have and try our mightiest to look forward and plan a bit with goals in mind so we have a sense of accomplishment. My goal is to finish the lamp I am working on, and get these 50 plants I bought in. Then do the winter trimming of the trees with my chainsaw and tackle the bushes later. Always garden work to do when you have such a big garden. Am still hanging up pictures and putting things back from the painters and floor layers but I save that for when the weather is too windy outside or it's raining or I'm only operating at half-mast.

    I thank all of you for supporting me!Cool

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2013
    Options

    Debbie, do ya think you're trying to do too much??? LOL! Your schedule sounds harrowing. I feel like a lazy good for nothing. I spend most of my time playing and very little time working. I think I've gotten a little self centered since mets .... I want to spend my time seeing friends and family .... Of course, maybe you enjoy that chain saw ... Tee hee!! I actually used to do all the yard work but with lung mets I have breathing and allergy issues and don't want to do anything to make them worse so now my DH and son do all the yard work. You are very lucky to have a doctor who is so responsive to your needs .... I don't know of any doctor who would come to my house! I think we all cry sometimes, debbie. For me it is when I think that my kids, though adults, aren't where they should be yet and I really want to see that happen. I'm afraid I won't live long enough and I honestly feel like I've worked nearly my entire life to see them become mature, self supporting adults who give back to society in some way. I want to live to see the fruits of my labor. Other than that, and seeing my grandchildren get older, I have done everything that I ever wanted to do. Yeah, I have a bucket list but the kid thing is the most important thing to me. I'm like you .... And everyone else on BCO .... I want a really long time!!