Hormonal Treatment for Stage IV
Comments
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I'm catching up with this thread and have loved reading the recent posts. Our experience connects so well with the wonderful article bestbird wrote.
Susan you do look magnificent.
Andrea, I want to shout something similar but don't. I'm not sure why, exactly.
Tryn2, I also love the circle of hands
Hope our week is a good one!
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Susan - your new look is beautiful.... what an amazing woman you are. You and everyone else are right about the "new normal" not being ALL bad. For the first year I felt like I was in a bad dream....and the first thing I thought of every morning when I woke up (if I slept) was that I wasn't dreaming and I STILL had Stage 4 cancer and I was terrified. I'm still terrified half the time, but I have gradually calmed down, and SLOWED down. I tend to be a little Type A-ish, and I would rush from one thing to another....I had "too many irons in the fire" as my mom liked to say. Now I truly listen to people when they talk to me. I look them right in the eye and hear what they are saying instead of thinking of the 5 other things I need to be doing. I even have long conversations with the mailman. I take walks instead of running, and I too take naps..... I am fairly sure I hadn't had a nap since I was about two years old until this last year. I go to all of my kids hockey games, lacrosse games, tennis games, school conferences; I don't miss anything. I sit outside and listen to the wind chimes and enjoy my garden. I answer the phone when my friends call instead of letting it go to voicemail. I call my parents at least three times a week. I make commitments and I keep them. I truly believe I am a better wife, mother, friend, sister and daughter.
But KiwiCat, I am SO just like you in that I want things both ways! I do look like I am back to normal on the outside (besides the shorter, curly hair and the port in my arm) and half the time when people wonder why I am not going a million miles an hour like I used to, I want to remind them what I have been through ("hello! do you understand what Stage FOUR means?") .....while at the same time I want to just be "one of the girls" or "the kids mom" or "Brian's wife" again and if one more person asks "how are you feeling?" in a very sympathetic tone like they are expecting me to drop over dead any second I want to scream.
And - I'm sorry about your bad day but so impressed that you are still doing all those things and can handle a day like that - both mentally and physically. Christchurch....and Kiwi.... you are obviously in New Zealand which is at the TOP of my shortened timeframe bucket list.... lucky you.....
Tryn - I love working in the garden as well.... so therapeutic! This is one of my favorite times of year in Colorado.... everything is blooming. I hope you don't have to wait much longer for those scans.
Love my new circle of friends!
Andrea
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Hi all,
Thanks for the support. Wasn't meaning to complain about a "bad" week - just amazed that my life is "normal" enough that I can have little crap happen and feel like it's a bad week. Showed me how well I'm doing and was a good reminder for me.
And I am really lucky that I can still do 90% of what I used to be able to do!
Andi - good for you! Or as they say here in NZ - good on ya mate!
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Where did everybody go?
Tryn2 - did you get your scans back and start a treatment plan?
I have my PET scan on Wednesday. My anxiety is already starting to grow. KiwiCat- I am using your neurotic avoidance tactics by asking myself if I am okay - in that moment - and when the answer is yes, it helps. Whew. I just hope those scans show stability and not progression.
Hope you are all having a good Memorial Day weekend.
Hugs and hands....
Andrea
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Andrea - hugs to you. Waiting is the worst! In general, I'm ok right now, but I want answers NOW.
Patience is not my long suit. I also try to remind myself (and if I don't, my husband does remind me), worrying about it isn't going to change the outcome. Easier to say than to internalise, but it does help me a bit. Here's sending good energy your way to have progression-free unremarkable, and good news scan results.
Wishing you a good Memorial Day weekend and great results!
Terre
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It's a Holiday here in the USA. When we remember those who have given their lives in Military Service, living their lives and dying so that our citizens and others in the world can live as they choose. I started thinking of the women and men who have gone before in this "battle" with Breast Cancer. Without getting too gloomy or maudlin, I would like to take a moment to remember that the things learned from their struggles and the life-long efforts made by scientists and doctors have made it possible for me to live my life well and to look forward to years of living my life!! Humans can be amazingly caring people and often give so much of themselves to assure that others live well. On this beautiful day I want to say Thank You!
I know that several of you are waiting for tests or test results this week. (Tryn2, Andi and others) I HATE waiting! I've never been great at it, but since my diagnosis I've come to be quite bad at it. I just want you to know that I am thinking of you and sending calm & positive thoughts your way. Remember to breath!
Hugs and Hands.....
Virginia
(PS. Thanks for the Hugs & Hands closing, Andrea)
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No Andi not yet.. bone scan on Wed also while your having your PET. Holding hands in our "circle" waiting! Hugs too! Thanks for all the support everyone.
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Hi everyone, I am new to the forum and spent the last three days reading all the thread from the beginning and learned a lot. Now I am looking to sharing experience and giving and receiving support. I was diagnosed stage 2 in 2009 went through chemo and radiation and was put in tamoxifen then last year I had a fracture to the femur and during surgery it was discovered that I have bone mets. I was started in arimedex and my last scans (feb 2014) show stable. I look forward to meeting new friends and support through this trying times.
Aurora
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welcome aurora,
I have a bone met to my upper femur that was dx'ed about 6 weeks after my bmx, where it was thought I was stage IIB. Chemo was cancelled and I went straight to Arimidex and have been NED for almost 3 years. This is a wonderful place to come to laugh, cry, rant, whine, congratulate, commiserate and console. Take care.
Caryn
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Welcome Aurora! Yes another bone metster here but I'm on my second AI. Started onArimadex in 2009 and fifteen months later I has some progression so was changed to Femara. I've been on that for three and a half years and am at present NED. Once you get over the break and have been on your treatment for awhile you will find that life goes on and is what ever you make of it.
Hoping the SE are few and you have a good response.
Love n hugs. Chrissy
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Welcome Aurora. Another bone mets person here. On Femara for almost 18 months and doing well. Mine was found due to hip pain and femur ready to fracture (have a small break in it) and got a pin put into it. Was a complete shock! And I'd echo what Chrissy said (she said it better than I could) - once you get past the break/surgery/etc, life becomes what you make it and you figure out that how you live and how you feel is a choice.
Virginia - loved the sentiment. Very nice.
Hugs to all,
Terre0 -
Virginia - What an appropriate memorial day sentiment....I spent all day yesterday thinking about those women and men and silently thanking them. Good reminder! Thank you for articulating so well!
Welcome Aurora! I am fairy new to this board as well but already love and rely on my new friends. I have bone mets as well, but by the time they found mine (long story) they were everywhere - up and down spine, ribs, pelvis, sternum, etc. I've been on several AI's (I've switched a bit trying to mitigate side effects) and unlike most on this thread I am also on Herceptin infusions every three weeks. I am envious of all of you that just pop a little pill! Much easier.
Tryn2 - I will be thinking of you all day tomorrow as we go for our scans. I've had bone scans as well - you can see what lights up and what doesn't, right? Hoping nothing lights up on yours! I don't think I will get the results of my scan until I meet with my oncologist next Monday...... I am going to have one long weekend.... ugh. I'll try to remind myself of what KiwiCat said (or at least, her husband says
) that worrying doesn't change the outcome.... I also try to "let Go and Let God" but that's an even harder one for me.... anyway, I will be holding out my hand to you tomorrow.Thanks for all the support everyone!
Andrea
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Andrea I will be thinking of you also tomorrow! I know I will think of you holding your hand out and holding out my hand back to you. Thanks for everything. Hugs and good luck! I won't get my results till June 5 (next Thursday).Cathy
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Well I've got some not good news. In April my tumor markers were up 30
points. I had them done again last week (mid May). They are up 30 MORE
points. I had a low of 130's in February, that was as low as I got. Then
166 in April, now 196 in May! What to do? Arimidex seems to be failing.
My dr is of course very busy, yesterday was a holiday here, now he's
playing catchup! All I know is he will call me "soon" after he thinks it
over, determines my next plan of action and writes "new orders". I have
been on Arimidex since June 28 and Xgeva to strengthen my bones since
October. You can see by my profile what I have. ER pos, PR neg, Her 2 neg. No organ involvement per the PET scan in Feb (and it looked better than ever). But I did have lesions (that were not lighting up in Feb) in my skull, spine,ribs, sternum, pelvis, hips, upper left arm, upper left femur (thigh). Lymph nodes in chest went from pos to negative. Still have sight pleural effusion (no change since drain last July) and pericardial effusion (that I didn't know about till May) Now what??? HELP!!!0 -
Hi Ladies!
i am just joining the thread because I love so much of what I read here. I read the connection with Memorial Day and yes, I think we are warriors in a different kind of fight but I work with veterans and there are similiarities. We do give of ourselves so others benefit, we sometimes feel on the outside and need to talk to our own. Our lives can seem sweeter because we have looked death in the face and have been terrified and rejuvenated at different times by it. We are the real faces of a disasterous problem and are brave to support one another.
I was just dxed with mets a couple weeks ago. Starting femara and monthly Zometa tomorrow. Today I went back to old rads clinic from '09. threwme for a "flashback" but good tonight. Rainstorm and thunder brought me back to right now. Your wonderful posts reminded me how special and brave we are! God Bless
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Hi Valerie and welcome! Hearing it back and you are now stage IV can throw you for a loop but once you get your head around it all you will continue to live life the best way you know how.
Many years ago to be given this dx would definitely have been a death sentence but not now. We can live long productive lives while being treated and keeping this disease under control. Goodluck to you.
Wanderingspirit I answered you on the other thread but I will add here that a progressin is not the end, just a bump in tge road and once you have your new treatment plan you will feel a whole lot better.
Love n hugs. Chrissy
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Thank you Chrissy! I am STILL waiting on my dr. to call. Darn holidays!!
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Dear Wandering Spirit,
There is so much. I was just at MO yesterday and he listed of so many wonderful txs available to us. I dont know what your options are, financially or insurance wise but may be time to go to see someone who specializes in newer treatments? I don't want to iverstep my bounds its just that I was so encouraged yesterday because of so many options. Just a thought. Hugs to you.
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My vision in my right eye seems to be getting worse so I went to the Ocular Oncologist today and they took a bunch of pictures and did some ultrasound. Turns out my tumor is bigger than before radiation which is really tough to hear. They said it doesn't look wider in area but it seems to be thicker. He said that the radiation can take a month or so to work so I shouldn't be worried about that but what seems more worrying to me is that it kind of shows that the Tamoxifen is not really helping. I know my breast tumor doesn't seem smaller but it also doesn't seem larger. My breathing has gotten better so I was hopeful. It also makes me worry about my brain mets and whether all that radiation worked at all. Really feeling down today.
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ahhhh SusininSF ... Sorry to hear your down today! Some days we just feel scared and down but tomorrow almost always is brighter. Hope they are right about the rads taking time! Reaching out my hand to you and making our circle. Hugs!Cathy
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Hugs and hands to all of you! I don't post often but do check in regularly and hold all of you close to my heart. I don't think I could have made it through the last six months without the support and comfort of knowing you are there.
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Thanks Cathy! Means a lot to me!
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So sorry Susan...It must be so scary and discouraging. So lucky we have a bunch of options though. Are there clinical trials near you? Also, people feel so good about Femara but you look young so that might not be an option u want to hear. There is Faslodex also (not sure about the spelling) . There is a BIG conference in Chicago for oncs this week. My MO is psyched about it. Keep the faith....Hugs to you. Valerie
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Thanks Valerie! I'm not so young. 50. I wasn't menopausal yet so have to get Zoladex injections every 4 weeks. I would like to get a hysterectomy but will talk to my MO about it after my next scans. My MO is actually head of clinical trials for the main cancer hospital here so she will keep an eye out for me. She said that the brain mets make it difficult to get into some trials. If I can at least get them stable it shouldn't hold me back.
I agree that there are so many promising treatments on the horizon. I'm particularly excited about the immunotherapy developments because I do believe that our bodies can heal themselves given the proper guidance. We just have to stay alive long enough to benefit from these developments!
Keeping the faith and soldiering on!
Hugs, Susan
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Hi Susan,
So sorry to hear you got not great news. I was doing the Zoladex injections monthly for about a year and FINALLY went into menopause and got to stop them. But since you're doing Zoladex, you have a lot more AI and treatment options open to you. My mother had brain mets (from another type of cancer, but still...) and had similar - looked like the radiation wasn't working and mets weren't shrinking, but then they did after a month or so. Hoping you have the same result, and so glad you have a good MO.
Hugs and good thoughts your way.
Terre
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Susan, I'm thinking about you, dear -- one thing to think about -- you are relatively new on Tamoxifen. It's not a fast-acting drug (I am told) so better days could be ahead. I haven't been on Tamox long and my scan results are getting progressively better. Easy for me to say, I don't have a tumor in my brain! Another thing, Tamox seems to be working better on my lungs and bones than my skin. Seems to have no effect on my skin mets. So the Tamox may be helping your lung even if your eye isn't being helped. Waving my magic wand for comfort and peace for you, and for all.
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Thanks so much Ronda! I didn't know that Tamoxifen may take a while. Also good information for me that the tumors may not all respond the same way to treatments. I'm just so new to all of this and have so many damn tumor sites to consider.
Loved your Disney picture on the other thread! Such a beautiful family! My son leaves for Europe on Monday for a 2.5 week trip with his friend and his friend's Mom. I will miss him but I think it will be good for him to get away and have some independence. He went to a French school through 8th grade so he speaks fluently and feels pretty comfortable there. I was thinking today that my greatest hope is that he sees the way I have been able to enjoy my life despite this illness and learns to enjoy every day as much as possible. At 16, I think they are old enough to learn these important lessons from us, lessons so many never learn before they die.
Feeling much better today!
Hugs, Susan
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So glad to hear your feeling much better Susan! Your son is lucky to have such a insightful mom. I am sure it will be great for him and will learn great lessons too.
Hoping the Tamoxifen kicks in and soon!Waiting for Thursday June 5 to get my scan results and finally start treatment. It will be a month on the 2nd since stage 4 dx and still not on any treatment. My MO did tell me I'd be going back on Tamoxifen or something similar... not sure why they make you wait?
Cathy
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I just wanted to pop in to send best wishes for a peaceful weekend to all who are currently struggling- Valerie, Susan, Wanderingspirit, tryn2 Andrea and Aurora and any others I have missed. I am thinking of you all.
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thank you for your kindness intothewoods!0
