Bone Mets Thread
Comments
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Carla - freebird. You sound great ! So glad you got to go see the boys. And you are going to Super bowl tomorrow. You rock ! A palace to decorate. That should take awhile. Don't go trying to get it all done at once. Pace yourself.
Romansma - hope. I read about your vacation with just the kids. How cool. Glad you got to make sinew great new memories. Did you take a lot of pics ? I always forget the pics on holidays. To busy enjoy everyone. Hoping after your appt next week maybe they'll be a different tx ? Or better ways to manage the side affects of this one. My heart goes out to you.
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Hello to all,
I feel so behind, was gone all day and so much reading to catch up on. Terre I hope your tummy troubles have subsided and you got to go to your photography class.
Patty, I hope you continue to feel better after your surgery, I've never heard of anything like that.
Dunesleeper, hope you're resting comfortably and your pain is improving.
Jobur, praying your CT scan brings you great news. Sending positive thoughts and healing hugs your way.
Romansma, your post really touched me. You're not a quitter, this stuff is hard, hang in there. Sending you hugs and healing energy.
Carla, so good to hear you're being able to get out and do things. Enjoy the Superbowl party. You amaze me!
Wishing everyone a wonderful weekend! Hugs, Annie
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Patty, it was just one bad day. I'm praying I don't have another one. Normally, my pain meds do a good job of controlling my pain. Boy. After that incident, I'll take a lot more advil and a lot less oxycodone. Yeah, I got a taste of some real pain.
Jobur, it's not generally a good idea to ask the doctor for a certain drug, although you could say you heard good things about this or that. I'd contact your coordinator and explain the situation. They should either fax a script to your pharmacy or have you come in, after which they fax the script. Don't stay in the dark place. Just describe how you are feeling. They will know what to do from there.
Romansma I'm glad you have an appt this week. (So do I.) Anyway, you know, if you feel like you have had all the treatment you feel like dealing with, girl, that is okay. That is your choice, and if you are comfortable with your decision, who dares question it? We're with you 110%!
And Carla, I am soooooooooooooooo glad you are feeling better. They don't call that stuff Red Devil for nothing you know. There's a group called the Red Devils who raise money to help women who have breast cancer get access to things they otherwise couldn't afford. I ran into them doing a hike the other year. That is a great name. It's a tough name. It represents the toughest of treatments. I'm' so happy you are feeling better. And I'm glad your kids will be living in a healthier place too. That's huge!
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That's right. Terre. How could I forget Terre? Tell us about your photography class. Please oh please!
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Hi all,
Jobur - I get Prozac from my GP. Go see your GP now - at least ask for Zoloft, it's a little less "harsh" than Prozac. And it takes a month or so to kick in. So sooner is better. Then the counsellor can adjust your meds in March, but at least you'll have a start. Thanks for the confirmation on the CT scan and tummy issues. I'm still not quite right...even Pepto caplets aren't helping. Just fee sick.
Patty - Ouch! That sounds intensive, but hoping it works for you.
Dune - glad you feel better today.
Annie - I'm feeling like you - gone for a day and I'm way behind!
Carla - glad you're doing better.
Romansma - don't beat yourself up. You haven't given up at all and you haven't failed in any sense of the word. Here's hoping that your tumour markers are down.
I did go to my photography class today. It was good, but a little disappointing. I think because he cancelled the last one, it was doubled up, so there were over 40 people in the workshop, which was too many. But I learned a lot. He does a three day workshop on a boat in the Marlborough Sounds in Sept, doing nature and bird photography. It's going to be expensive, but I really want to go if I can. I've also been looking at a new lens, and it turns out that by attending the workshop, we can get that brand of lens wholesale!
Very exciting.I know I'm missing people...tired and a bit brain faded.
Hugs to all,
Terre
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terre. / glad you made but to photography class. And you enjoyed it. Awesome. 3 day workshop in a boat sounds fun. Hope you get to do it.
Dune - you sound better. - hooray.
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This is my first post on the bone mets thread but I am getting ready for my scans on Wednesday and am feeling that pre-scan anxiety. I have no reason to believe anything has changed(stable bone mets)I don't have any pain but 18 months ago I had no reason to think anything was awry either so obviously my body isn't real good at telling me something is going on. I plan on staying busy until I hear from my onc on Thursday. Stable is my favorite word now a days!
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Partyoffive - welcome to this thread! Staying busy is the best thing we can do while waiting for results. Good luck with your scan and results and stable sure sounds good to my ears. Keep us posted.Take care - Linda
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Partyoffive, I'm with you on stable being my favorite word and totally understand your scanxiety. Sending positive thoughts and energy your way. I just had a bone scan Jan. 5th which was too hard to interpret as I had just finished rads. Have an upcoming CT scan on Feb. 11th for chest and abdomen so feeling a bit anxious about that. Staying busy though is a good distraction and I look forward to you posting good news after your scan. Best wishes, Annie
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Hi everyone. So sorry about everyone's pain management difficulties and the problems with incompetent, clueless practitioners.
I'm boiling mad at my medical home right now. They cannot get it into their heads that I need monthly visits to a medical oncologist. I just got a referral for ONE visit to my M.O., and six visits to the Sleep Disorder clinic. It would be funny if there were not some patient out there freaking out because her apnea isn't going to get covered.
Now I have to spend another few hours on the phone on Monday. Why can't they get this right???
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Carla, so happy you are feeling better. I am starting to, as well. It's so depressing to feel sick every day and not be able to do even the mundane things. I want to live, but I want to live with the joy that comes with being able to do and experience things. Chemo really dampens that, at least for me. I don't think I feel like I am personally failing by quitting this chemo, but being a mom, especially to my 10 yr old, brings so many conflicting feelings. He needs me to stick around and help him through the tough days and be there for the fun times. My husband shared with me that he worries that someday he will be in need of someone to care for him in illness and I won't be there to help him. I've always taken care of my family and I'm heartbroken to think that I may not be there for them when they need me most. That's the part that makes me feel like I am failing. I know, logically, I am not....it's not in my control. Treatment helps us to think we have some controls, some hope.
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Hello everyone, my tm's dropped a little more to 27 from 29. Felt like crap all day yesterday though, I guess from the Zometa, I know I don't push myself either...
I still pray for a cure for all of us everyday.
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Hi Musiclover - good to hear from you and TMs going down. Allow yourself to take it easy after the infusion - it takes me 48 hours to bounce back.Linda
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Linda, Thank you. I took 2 ibuprofen and I feel much better now. I should have done that yesterday, need to drink more water too they say the day of and the day after but I am not so good about that either. I noticed that we were dx around the same time. Almost identical dx except I had hip areas only, then shoulder followed but I think that cleared up. How are you doing with living your life? I am still very much in "stalled" mode despite getting relatively good results. I hope you are doing better in that respect than I am.
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Terre, what kind of lens? I used to have tons of 35mm stuff. Pentax. 3 lenses. Remote shutter control cable. Filters filters filters. I now have a Nikon digital slr and an amazing kodak. But almost everything I shoot is with my phone now, and it's not even a good one. There was a photographer with a column in "Outdoor Photographer" magazine who offered classes. I always wanted to do that.
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Musiclover - I had never noticed we were dx at the same time! I have my ups and downs but overall I'm doing fine. I have a CT scan on the 19th of Feb and keeping my fingers crossed that all is still stable. I have to say I'm doing better than one year ago thanks to rads in different places to bone mets. My TMs are going down as well. I try to keep busy on good days but winter and the freezing cold are getting to me. I'm going to Cuba with my sister for 2 weeks around the 22nd of March. It's good for me to have that kind of project and hoping my Feb CT scan will not interfere with my plans. I'm looking forward to spending time with my sister who worries so much about me. I'm the youngest of the family and it breaks my heart to see them worry. One day at a time - it's never the same! But I'm blessed to be well surrounded.Hope you'll feel better. This stage 4 journey takes a toll on us - it's certainly not a bowl of cherries! I think of you often.
Hugs - Linda
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Welcome to the thread, Party! I'm having a bit of scanxiety waiting for results, so you're in good company.
Just doing a quick read (I'm at work but not feeling it), and it looks like things are better for most of you.
Romansma - You are such an amazing person. My heart goes out to you. I worry about my husband and my cats; I'm sure there's no comparison with the cats and your son. Here's to stability and long-term chronic manageable disease - and a cure!
Dune - I have a Nikon D5100 with a Nikon 55 - 200 zoom. I have other assorted lenses from my D200 (which has died) but they act like manual lenses with the new camera. I am looking at the Sigma 17 - 270. Not the best lens quality, but adequate for what I want to do and not very expensive. And wholesale will be even better!
This is my two year anniversary of Stage IV dx. Off to the orthopedic on Thursday.
Hugs to all,
Terre
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kiwi - 2 year anniversary. Sweet. Hope you see many many more.
MusicLover - lower tms is great ! Hang in there.
Romansma - ohh sweetie. I don't really know what to say. My heart goes out to you. One day at a time.
Party - welcome.
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Musiclover, I only did Zometa for about 4 months, so am certainly no expert, but I did find that drinking LOTS of water the day before and day of made a big difference in how I felt after treatment. After several months, I asked my mo about Xgeva, so now I get that monthly instead. It is a simple shot rather than an IV infusion and seems to have fewer se's. Slightly different drug and unfortunately, more expensive than Zometa. Hope you are feeling better today.
Ninetwelve, I hear your frustration! Won't go into it, but I have been having similar problems with my insurance and clinic. Hope you are able to get it straightened out without too much time sitting on hold.
Romanma, My heart goes out to you every time I read your posts. I have never had chemo, but when the day comes that the AIs fail me I know I will be very resistant to treatments that may or may not extend my life at the expense of what quality of life I have now. With your son so young, you must feel torn in two! I am so hoping there may be another tx for you that is more tolerable and gives you both quality and quantity of life. Are there any clinical trials with some of the new targeted therapy that you might be eligible for? Or maybe like Patti said, better ways to manage the se's of this tx?
Dune & Terre, thanks for the suggestions regarding anti-depressants and where/how to get them.
Terre, 2 years on 1st line Femara for you? That sure seems like a good prognostic indicator! Wishing you many more!
Sorry for not addressing everyone individually. Wishing you all clean scans and pain free days!
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Thanks for the good thoughts and wishes!
With regard to Zometa, I also read somewhere on these threads that taking a Claritin (or similar) the day before and day of (and maybe day after) also helps (in addition to lots of water). Zometa made me sick as a dog, but the water helped. They stopped my Zometa treatments before I tried the Claritin.
Hugs to all,
Terre
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Thank you all for the suggestions, my issues are only minor but I do appreciate your help.
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zometa made me sick as well. Oh my
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I"m having very sad thoughts tonite...I just so scared about dying...I can't fathom the thought that I won't see my grandson's young men and getting married...what if I don't....I'm sorry it creeps up ever so often about leaving my family and never being on earth anymore...I just can't even picture it....It makes me cry of the thought that I won't be here with my family....OMG...it's crazy...I HATE THIS DISEASE...DARN IT!!
I want to live....till i'm 80 or more...be with my family....i'm so scared of dying....sorry for the sad topic...
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Oh Carla, I totally understand how you feel, I have the same sad thoughts many times. I look at my beautiful daughters and I can't imagine not being around for them. I cry so hard some nights, never in front of them though. I hate this disease too, I get so angry sometimes I just want to scream. Let's stay positive though, we never know what new treatment is just around the corner that will help us treat this as a chronic illness. Sending you hugs and healing thoughts, Annie
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Carla, I'm sorry you are having such sad thoughts tonight. What kinds of things have you done in the past to ward off those thoughts? My mother hates sad movies, so I'm always having to find happy, upbeat movies. Obviously, being a depressed person, I don't generally like them, but every once in a while you get one that makes me laugh. That helps. Sad movies help me too, though. However, I have to be alone for them -- so I can cry. I don't seem to be able to cry about my situation, so release comes from crying about something else.
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Hello all - Just checking in. Had a busy week and didn't have much time to do more than to quickly read your comments. I'm so sorry that some of you are struggling and suffering right now. It makes me feel humble and grateful that I have no symptoms and no SE's from the drugs right now. I see the MO again Friday after more blood work. I don't expect the tumor markers to be down after only a month, but that's ok. I'm just grateful to feel so good. I teach part-time at a local university, and I just accepted a summer class in a program I love to work with. I waited until last week to accept to be sure I was OK with the meds, and I am. I have stopped trying to "accept" this cancer and just live my life as best I can for as long as I can. I don't deny my situation, but I'm trying not to give it any power. It keeps me from being depressed and anxious about it. As long as I feel healthy, I don't focus my attention on it too much. Easy to do when I have no pain or sickness. I have read comments here that really give me hope that this is becoming a chronic manageable condition. I have a good MO and nurse navigator, and as soon as I said I had anxiety the first week, I was prescribed Ativan. I haven't used it except for a few times to help me sleep, but it makes me feel better knowing it's here if I need it. I haven't had the anxiety attacks since the first week after dx, thankfully. With everything else we have to deal with at this stage, I can't believe some of you have to deal with the attitudes of some medical "professionals" who have the power of the prescription pad. What are these drugs for if you have to fight to get them when you're already fighting for your very life? Mindblowing! I'm so sorry some of you have to deal with such people, and I know it's frustrating and exhausting to start over with someone new, but this is your life and you deserve better treatment, so demand it! Maybe we're too nice and polite sometimes. So I hope you are able to fire these leakers and see people who actually care about your welfare. OK, I'm getting off my soapbox now!
We had foot of snow Saturday night and through Sunday, but we went out anyway to be with friends for the SuperBowl. Don't like either team, but it was a chance to get together with friends and talk and just have a little fun. Missed most of the game. If the Packers aren't playing, I don't care much!
I mentioned earlier that Wisconsin now recognizes same-sex marriage, so Rebecca and I went to the courthouse today to apply for our marriage license, and next Monday we'll have a simple courthouse ceremony with a few of our closest friends and Beck's mother. It's a very affirming process for us to be able to do this after being together for nearly 17 years, and we're excited. I never thought it would happen in my lifetime in this state/country, so it goes to show that things can change very quickly. For all of us I hope that means that it's true that soon we can be stable and manage this disease as a chronic condition. That would be so great. Hang in there, all of you who are having a hard time right now. We're all in this together, and we're all sharing our love and healing energy with you.
Hugs to all, Sharon
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Hello Sharon8 and All,
This thread is so active I really can't keep up, but I try to read at much as possible.
I agree about the Ativan, I don't really take it, but having it there if needed is a relief. I'm lucky my onc. gets it regarding anxiety, pain and her Rx pad!
Sharon8 your impending marriage has put a smile on my face - wishing you and Rebecca many joyous years together!
Just got my tumor marker results today, 5 months now in the 'normal' range, stable disease, thank you arimidex and xgeva!
To those feeling sad, we all 'get it' here, sending you support,
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I'm not sure if someone may have already posted this link somewhere on BCO, but since this is such an active thread, I wanted to repost it here. Ann Silberman is an outspoken advocate for metastatic breast cancer awareness. Her blog, Breast Cancer, But Doctor I Hate Pink, is well worth checking out if you don't already read it.
This link is to a petition Ann started a couple of days ago to persuade Komen to spend more of the millions of dollars donated to them each year "for the cure" on research -- 50% vs. the measly 18% they now spend in that category. And as I was pondering Carla's post tonight, all I could think of is that this (research) is where our greatest hope is -- and how important it is that we each do everything we possibly can to encourage and support more research.
So for Carla and for all of us, I'm asking you to please consider signing Ann's petition. https://www.change.org/p/keep-a-breast-foundation-...
Thanks. Deanna
(Edited b'cuz I'd initially spelled Carla with a K. Sorry, Carla!)
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Thanks, dlb. I wasn't aware until recently how little goes to research and how much goes to "awareness." I've always felt that the whole pink October thing was exploitive anyway. Now I know what a waste it really has become. I was happy to sign the petition, and I'll pass it on.
Sharon
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Thanks for the link Deanna. Going to sign the petition in a very few minutes. I'm thrilled to say that here, one of the agricultural companies is doing "pink bales" - it's wrap for hay bales and some of the money goes to Sweet Louise, a program for women with secondary breast cancer. I am a Sweet Louise member and I get $500 a year in vouchers to spend with the participating vendor of my choice.
http://www.nzherald.co.nz/hawkes-bay-today/news/ar...
If nothing else, it was lovely to see some money going to secondary breast cancer and making it part of the "awareness". I concur with the too much pink stuff, but this was still pretty cool!
Carla and Annie and Romansma- so sorry you're having a rough emotional time. Just sucks to be in that space. I had a period of time where every time I thought of my kitties - the little beings I took into my home and promised to care for all their lives - and how I would be letting them down - I would start crying. Still makes me misty-eyed. So I'm sure it's like 10,000+ times worse with children/grandchildren. All I can say is that I'm sending hugs your way. Hang on to hope - some days, it's all we have.
Sharon - I kind of feel like you - humbled and I know I have things easy. I have aches and pains, but that's about it.
Got my CT scan results. No evidence of any active mets and my bones are growing back. See the GP tomorrow to see if we can figure out why I feel like hell tummy-wise; probably gall bladder.
I had an absolute crap day at work and was unjustly accused of something by one of the directors. When he figured out he was wrong, he couldn't be bothered to apologise. Nothing like getting one's arse reamed by a 32 year old. I'm just over it. And I should be celebrating my fantastic CT results - 2 years of stability! and instead I'm just depressed. Need to pull out of this funk and get on with things.
Sharon - even if it's a simple civil ceremony - I want pictures! I am so thrilled for you two!
Dune - if I need a good cry, I watch ET. If I need a good laugh, I watch Young Frankenstein. If I really need a good laugh, I go to the damnyouautocorrect website.
Science - great news on stable tumour markers!
Jobur - 2 years stable on Femara.
Patty - thanks!
Sorry I'm not addressing everyone - I know I'm missing people here...so sending positive thoughts to all.
Hugs and much love,
Terre
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