Carolben, glad you are near seeing the end of this series of chemo treatments. Yes, waiting for results is the worst. I'm sure we all could agree on that. I hope you start to regain some of your energy upon conclusion. Yes, we all have to face the fact that we will always require some kind of treatment. It is our life reality.
ronda, I just wish you could be pain free. That has to be frustrating to hurt so much
Gail, you must be breathing better with 1 1/2 litres of fluid out of your lungs. My heavens, that's a lot!
Chanah - waiting with you....
Glenna, you are the example of how I am trying to be. You are an amazing woman
Teresa, hope the move to your new condo goes smoothly and I'm sure you will have lots of fund decorating it and being nice and close to your family.
surfdreams; summer is for the beach and somehow the air does seem, at least to me, to make me breathe deeper and more easily.
Karen2012: I hope to talk with you when you son has finished his visit. Just PM me when it's good to call.
NOW, I've made a promise to my GP that I would stay off BCO for a month to see if it helps lift the anxiety that still has me in it's clutches. It's worsened recently, and I do feel fine, but this is the longest I've gone since diagnosis without a blood tumour blood count test or lung CT. It's been three months and I don't have the tests until the beginning of the month followed by visiting my oncologist. My GP thinks BCO just reminds me I have lung mets and since I am so lucky to feel fine, she wants to try and get me to just enjoy this time in my life. So I will give it a go.
I didn't want to just stop writing, but I'll be back in a month, or sooner, if her idea doesn't help and my anxiety gets worse. It's just she can't put me on any higher of a dose of anti anxiety medication and the last three weeks have had lots of bumps in it for me - my son's bad uni grades, us telling him do better of we won't financially support him, had a whopper of a migraine for three days, a cold for 10 days with a raw throat and we've had the most rain ever here in a July for the last 100 years...............and I need sun!
No matter than I'm not here reading or writing, all of you are already in my heart.
Divine Debbie, although I have not known you long on these boards you are already in my heart. When I do those breathing exercises of yours, I am thinking of you, so I associate you with calmness. I am hoping this calmness returns to your life. Wishing you tons of sunshine and joy-in-the-moment.
Debbie,I understand your doctor's thinking. Sometimes I do get upset being on the boards ... Especially when we lose someone near and dear to us. I hope it helps your anxiety to be off for a while. We will think of you and hope the sun begins to shine in your part of the world!Hugs, Glenna
Dear Debbie, not only do we live on the ledge but we share other's ledges as well. Sometimes it gets to full. Getting centered is half the battle. Xoxox. Jo
MRIs showed liver nodules are still small and they are still not able to say for sure if they are mets. The area on the rib is resolving, so it was either only a fracture (not a met) or if a met, chemo is helping, but MO says it is too small to biopsy so it will just remain a question. GI symptoms are apparantly from two hernias. gall stones and previous non-cancer liver issues that have now advanced due to chemo. Lungs still have 4 nodules that appear to be mets. No more, no less in number or size. So, no conclusive progression or regression, likely stable.
I have an appointment with a stage 4, Her2 specialist at Sloan Kettering on Monday afternoon.
Now 3 weeks in, I spend less private time sad and afraid tough I till need to be busy or around people to keep the demons away for long. Other than mentally freaking out, getting all positive and then changing the subject any time the terminal nature of stage 4 and its associated realities come up, my family is absolutley fantastic. I can't imagine going trough this witout a supportive family.
Debbie will see you in a month (if you keep your promise). chanah seems like stable is good news, sort of, but difficult to work through.I'm still iin hospital as apparently I had some sort of seizure at the weekend. I have no memory of this but it seems like it was a bad reaction to my pain meds. My family thought I'd had it. They've changed my meds now and I seem to be ok again. Have appt with onc tomorrow so will see if she can shed some light on things. Scan shows I may have scull mets.
@Gail, my gosh, woman, you must be driving the doctors crazy .... so sorry to hear you are back in the hospital but glad they've got you on some different pain meds! Good that you have such a supportive family! Hope they don't find mets in the skull. When will you know? @Chanah, stable is good, always good. Will look forward to hearing what the specialist at Sloan Kettering has to say. @Jo, you are so right .... it is sometimes so difficult to read of the difficulties our cyber-friends are having. Sometimes a break is absolutely necessary!
Getting ct scan this afternoon. Not sure when results will be reported. May be next week.
bhd1 - hoiw re you doing?
gail5 - I am praying your scan will be good,
Oh damn, just wrote a whole thing and somehow wiped it out!
Huge hugs to you, Gail, you amazing, courageous woman!!! Damn the suspected skull mets. Know we are all waiting with you for your results. Sorry you are having such a rough time, it's been just 1 thing after the other for you. The fatigue I feel afer 6 months of chemo is quite scary, I'm as weak as a kitten! Hoping to get better and stronger now it's over. I really hope it will work for you, Gail!
Teresa, congrats on selling your condo! Sounds like the move will be a good one, so great to be closer to family. I also have a fondness for De Nile, hear it's great at this time of the year!! But it's not really denial, it's just not going there. I have few illusions (I think) about the crap I'm in, but right now, like you, Debbie, I feel well and am asymptomatic, so I'm choosing to not think ahead (much)!
Every hear the saying 'you never get a problem without a gift attached to it'? I think that is true, if I look hard enough I can see positive things that have come out of the bc. The biggest one is that I see how I'm really loved by those close to me. I feel their love at a soul level almost now. That feels so good, and is also very humbling. I've become even closer to my 2 wonderful sisters and other family and friends too. I'm learning to show my vulnerabilities more and can sometimes get to a place where I'm at peace. That's the good stuff that I try to focus on right now.
The only men in my life, apart from friends, are my son & my Dad. My Dad has been just great, calling me every other day. He just wants to know that I'm doing ok. He did ask me if I would have more chemo if the scan shows progression. But I can't answer that one right now. My son also, he's been out here from Israel twice in the past year, we facetime a few times a week. With Ben, my son, I don't want to go to dark places if not necessary, but it has been necessary. Sometimes I do tell him of my fears as much as my joys, but don't dwell there. We've always had an open relationship, he knows my stuff and I know his, I hate to see him sad about me, but he's been so supportive and amazing, I'm so proud of him.
Had the last Taxol last Tuesday, scan is scheduled for the 30th and I'll see my onc on the 2nd of Sept. Trying very hard NOT to think of that, again, it's not happening right now. Have also been pretty tearful this last week - finishing chemo is so wierd. I'm so relieved it's over for now, but also hard not to wonder if it "worked". Felt such an anti-climax finishing chemo - no fanfare, dancing girls or marching band! Not that I really wanted that either. I just wanted to cry. I think I've been really strong and in coping mode for the last 6 months, now it's over I've let go of that, and feel bone weary and quite emotional. I figure it's ok though, it was time to let some tears out, and let my defences down.
Debbie, we'll miss you, but it's worth a try - hope your anxiety does lessen. I also think of you when I do the breathing!
Chanah - you're dancing with the stable boy - that's good news. It's kind of wierd though isn't it - how these days it's good news if our lung mets just dont grow! Awww...
I'm so lucky to have 2 amazing sisters who will discuss anything - they are not scared to go to worst case scenario. They have told me that they will make sure I'm comfortable and lack for nothing. That they respect my wishes not to make it a long, drawn out, painful thing. And they will be there with me. I hate having to talk about that, but it needs to be done. I'm the baby sister and know they will look after me, as they always have. That's a huge comfort.
Better submit this now before I wipe it out again. Am eager to get my body moving and improving now that I'm off chemo, sure my emotional state will improve with my physical improving.
Thank you all for being here, sharing this journey
Carolben, that's some length of post to have to repeat. No wonder you're fed up. Know what it's like just waiting now to see if chemo working. My onc has been to see me and ct scan shows progression in liver. So looks like taxol isn't working. She doesn't think another chemo is likely to work. A clinical trial would be good but I'm not well enough to qualify. She has suggested another hormonal called Megace. I think this is on a nothing to lose basis.
Gail, I hope your onc manages to pull a magic rabbit out of his treatment hat. Thinking of you!
@Carolben, congratulations on completing the taxol treatments. It is hard when you stop treatment ... Like a void. Like, I should be doing something! Just try to enjoy this time before the scan and try not to stress over it! Sounds like you have wonderful family support from your dad, son and sisters. Your relationship with your son is such a gift!! Sometimes when I know I am going to write a long post I type it in my ipad notes and then do a copy and paste. I hate losing something LONG and we have all had it happen!
Gail, I'm sorry to hear about your liver. (Was skull mets found?) Latte is right about the AI. Other ladies here have had no luck with the first couple AIs and then one finally goes to work. Especially with your ER+. It would be great to have improvement enough to qualify you for a clinical trial but just enough to have you FEEL better would be welcome, too. C'mon, magic rabbit!!
Just wanted to add about skull mets, Gail. Although they sound scary, my onc told me they are just like any other bone mets.
Yes, that was a loong post!! Gail, so sorry the Taxol isn't doing it for you - I really hope they can get you onto a trial or hormonal. And I hope you start feeling better soon. You never winge and moan, you're amazing!!
Glenna, you're right - I will do the copy and paste thing! It is a void when finishing chemo - I immediately got all fixated on "now I have to get fit" and went and did a huge walk - and couldn't get moving at all the next day! I want to feel all better right now!! I'm so trying not to stress and fixate on the scan - 1 week today - my gut clenches whenever I think of it. Then I move my thoughts along, but it keeps coming back. But it'll be done soon and whatever is, just is and is already.
Have been struggling a bit with depression, difficulty looking after the basics like cooking and showering, or getting up enthusiasm to do anything. I had a really good talk (and a huge cry) with my closest friend here, and she just listened, no advice, and that did me a lot of good. So I've been feeling a bit brighter since that.
This time I'm not going to waffle on, must get busy with booking my ticket to Israel - looking at mid September, 2 and a half weeks with my son, sounds just like a piece of heaven to me!!
Carolben - there is also a really easy fix to losing long posts - the "undo" button - it shows up like a little blue left facing arrow in the tools menus right above the text box where you're typing. It will undo the last change you made - like a huge post that suddenly disappears. It will put it right back where it was.
Thanks Surfdreams, I see it now - I just love that button!!
Having my scan tomorrow, will see my onc on Monday for results and I'm just so nervous. Keep telling myself that what is, is already, and not to mess up today by worrying about something that hasn't happened yet, but I'm terribly anxious. Azor time!
It's cold and rainy here today, so I got back into bed with my electric blanket, and my book. It's called Bald In The Land of Big Hair by Joni Rodgers, and it's her story of non-hodgkins lymphoma and her chemo, she has me laughing out loud at times, but it's still very real - a good read.
Carolben, praying for good news on Monday!! I will be changing chemos as well. My onc stopped the taxol on Wednesday because of neuropathy. I'm sorry .... It was pretty easy on me and was keeping me stable!! Anyway, let us know your results ... And try to relax this weekend!!
Thanks for the wishes Glenna, but the scan shows all the nodules in both lungs have grown. The biggest are still just under 1cm and there are a bunch of new ones and the ones that were pinpricks are now 4mm. Both lungs, front and back, top & bottom. So no NED, and no stable boy this time dammit!!
I'm sorry you (& I) can't carry on with Taxol, it was pretty easy. I was upset, thinking that the Taxol didn't work, but then I thought that in a way it did, because it kept all those nodules of mine the same size overall for 6 months.
My oncologist reckons that if I hadn't of had the Taxol I would not be able to fly to Israel now. That's scary!!
So we talked about other chemos - he seems keen on Carboplatin and Gemzar. 2 weeks on, 2 weeks off, once a week. Side effects don't look too hectic. He also mentioned Xeloda, Ixempra and Navelbine
I really wanted to just leave everything until January, but the way he talks it doesn't sound like such a bright idea. I'm still asymptomatic and as long as we can keep these nodules small, the better my qol will be in the long run, he says.
What we're going to do is leave everything for 2 months, then have another scan and then decide. It will be interesting to see what those little critters do when they are left alone with no treatment.
I will have to do my homework and find out about the different chemos he mentioned so I can be part of this decision re more chemo.
So I have another 2 months of chemo vacation, yay!!
Do you know anything about Eribulin?
Feeling a bit numb, was so hoping for better news, but we don't think it's spread anywhere else, but we will do another bone scan before starting chemo anyway.
Carolben, I'm glad you will get a break from chemo before starting another. I hope both you and Glenna find a treatment that treats you better. I'm still searching myself. Tamox feels like it's making my lung and bone mets grow faster. Like you, I felt more than a little disappointment when a treatment doesn't work, and yet who knows, maybe it did help, just not enough. I hope you have a joyful visit with your son.
Carolben, damn those pesky nodules .... Wish I could wave a magic wand and make them disappear. Sorry about NED leaving you. He is so fickle!! Wish he would stay in our lives and quit with the coming and going! Glad you will get a break so you can enjoy your trip! I had gemzar but not in combination with carboplatin. I found it fairly easy to take as well but it didn't work very long for me. It's been two weeks since I stopped the taxol and it seems the neuropathy is getting worse. Will find out tomorrow what the next course of action is. I'll come back with my report! Michelle, I was on tamoxifen for 5 years when I was I. Remission and again after my stage IV diagnosis. It didn't help me much the 2nd go round. Unfortunately I didn't get a long run on the AI's. hang in there as long as you can .... It beats chemo!! LOL!
I got good news today. The CT scan showed NO progression, and also a clean liver! I will start my new chemo next Wednesday. Actually, I had this chemo in 1987 and since I went 20 years cancer free, I have lots of confidence in it. It's an old treatment - CMF (cytoxan, methotrexate and 5 FU), two weeks on, 4 weeks off. When I had it in 1987 I also had adriamycin and vincristine with it! I had it every week for 16 weeks and it was pretty rough. The 20 years cancer free made it worthwhile!!
Great great news, Glenna!!!!! Hopefully, it will get that nasty neuropathy under control too! Yeah for clean livers!!!!
My doctor's idea of not coming on here for a month to see if it decreased my anxiety about the lung mets was a total failure.
How can I not think about something that is affecting my health? How can I not be scared and anxious? Had a visit with oncologist yesterday and she ordered CT's of head, lungs and abdomen. Head because of my increasing migraines (duh - stress and taking Tamoxifen), chest (my bc tumour count came back 30, up from 26 3 months ago, so on the border of not too worry....they want it less than 30), and abd as my liver enzymes are high again. But they go up and down. In six weeks some of the numbers could be way down - my liver enzymes have been elevated ever since I started on Femara 3 years ago. Oh, and a previous Ct showed my spleen and liver a bit swollen, but nothing special. I think, as the liver and spleen are filters of the body, that mine are choked with the Tamoxifen and other drugs I take.
Heaven, how I have missed you all. That's the last time I take that kind of advice. I have been a nervous wreck these three weeks before seeing the oncologist yesterday and knew if I had been with you all I would of felt better. My oncologist said it might take a year of so to adjust to these frequent visits - hmmm, so do you ever 'adjust' and not get anxious before?
Carolben - darn, darn, darn. Guess those doctors better whip up a magic potion for you and help clear those suckers out of your body! I am so glad you are still able to go and see your son. How exciting! Gee, I get excited when my son comes home overnight and he's just in the city 1 1/2 hours away! But he is still my baby, even though he is almost 20 and 6' 4".
Glenna, hearing your good news makes me so happy I am crying right now. I may not believe in God, but I believe in positive thoughts and mine go to all of you! For you Glenna, no progression sounds lovely and the next drug they are trying might just be the one!
And hip hip hooray for clean livers.
Have any of you had high liver enzymes while on Tamoxifen or Femara? Mine have been up and down,,,,,,,,,but never all quite normal.
Saw oncologist yesterday for the 3 month checkup and she said she felt everything was ok but just to be sure and knowing me that I didn't want to wait another 3 months, she ordered Ct's of lungs, head and abdomen. Lungs for the mets to see what they are doing, head as I've had more migraines, which I attribute to stress and the Tamoxifen and abd to just check the liver. They ct's my liver and abd in January and just said the liver and spleen was a bit enlarged.....no worry....and so they would be as they are the filters of my body.
I really have no more energy to be upset.
Ronda, if you feel your mets are growing on Tamoxifen, ask your GP or oncologist to just do a bc blood tumour test. My GP is always willing to sign for anything like that that I want. And when I say her this week she agreed I would feel better to do it monthly, so I have an idea of what is going on, keeping in mind a slight increase does not mean the tamoxifen isn't working, but will have the following month one to look at. She thought this might make me more anxious but I said not knowing creates the worst anxiety in me.
Gail - how goes it with you? Your spirit is so strong - those doctors better dig deep into their pockets of 'trick's and pull out something to help you. Maybe Glenna can wave her imaginary wand over you! We sure all could use one!
What is difficult for me too, is we decided (hubby and I) to only tell 3 close friends about my mets, so while everyone is happy and thinks all is 'hunky dory' with me, I sometimes think 'if you only knew I had Stage lV BC', but I don't want people to feel sorry for me. It would just explain why I like to stay here on the property, taking care of finishing redoing the inside of the house and working in my gardens with my faithful dog Jaki and cat Fred. That's all I need, peace and quiet.
Doesn't not knowing get to all of you? And that's why visits to the oncologist are so stressful as we wait 6 weeks or 3 months between checks. All I know is on Nove 22, 2009 my mammogram and u/s were clear and the first week in March I felt a peach pit size lump in my breast - less than 4 months and my type of bc was graded 3: invasive and aggressive....well it sure did invade, even with clear lymph nodes, chemo and radiation.
I have another question for all of you - do you find yourself less able to easily take care of stressful things? I used to just plow them them, now I hesitate and afterward, feel like a deflated balloon. Like BC has taken my strength all out of me.
Wow, it's so good to be back! You all fill me with inspiration and hope.
Hey there DebbieGood to hear your voice. (I imagine a happy bird chirping when I read your posts.)So when are your next CTs? I'm wishing/hoping those bad headaches go away soon!!! Yep, I feel like a deflated balloon sometimes. Challenges that I once gleefully strangled now make me feel fragile- jagged -powerless. I look for things to make me feel strong and capable. ... Haven't found many. Anybody got any ideas?I'm having a biopsy tomorrow. Since starting Tamoxifen 5 weeks ago, I've had 6 skin mets appear. (pea-sized lumps). I'm wheezing a lot, too, even with inhaler use. Can't understand how quickly downhill I went on Tamox. 5 weeks! I can't even think about what's going on inside, that I can't see or feel, if my skin and lungs are this bad. I have smart doctors working on my case. Hope they figure something out soon.
Welcome back justagirl.
Glenna, I am so happy for you. Thank you for hasring your good news.
Hello, I think I would like to join your group. I have lung mets with a pleural effusion on the right side. I have just had nearly 2 liters drained, 1 liter at a time because I have to make them stop at a liter. It is just too painful. This is the third time I have had to have my lung drained. The tech says I still have a lot of fluid still that shows on xray. I have been away from BCO for reasons similar to Debbie but I dont think it works. I have just spent the last month being a hermit and not doing much of anything. I have decided to try to get into a routine to get me out of this funk. I am so glad to be able to come here and find that I am not alone going through this. I am not much of a poster, but I read here often. I just felt that I would introduce myself, and hope to get to know all of you.
Have been celebrating at the beach with some great friends from my church. Will post again tomorrow. Just wanted you to know I'm here, reading your posts, and appreciate the good wishes. Debbie, glad you are back. Europa, welcome!!
Hope you are having lots of fun Glenna!!!