Hormonal Treatment for Stage IV
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Wendy, I was wondering if they will put you on Zometa or Xgeva due to the rib spot? I have spinal bone mets from the beginning in 6/09 and this has helped me a lot. I'm also on Femara & Lupron shots to suppress estrogen.
Terri
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Very happy for those of you with the good news. Some days of this are so depressing, it is nice to get on here and see that it's possible to make it! I get so scared sometimes. I feel like I'm so uninformed when I read these posts and about the medications and treatments. I guess I have always been so carefree and believing in fate that I don't question enough. I don't even know what to ask though.
I had CAT and bone scans done and there were spots on spine, ribs, pelvis, and shoulder. I am currently taking arimidex and Xgeva. Everytime I put that arimidex in my mouth i say, "Do your job!" I have an appointment in Pittsburgh for a second opinion of sorts (or just to see if there is more we should be doing). I live in a small rural town and I feel like it would be a good idea to get out and see if there are other options. I like my onc, but she is new and she actually cried when talking to me about my diagnosis. It is nice that she is sensitive and I think experience will help her grow a thicker skin, but it also makes me feel kind of hopeless...
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Jenn,
I hear what you are saying about checking other options especially if you live in a rural community. When you are diagnosed with stage IV or probably any bc; you need someone strong and confident to handle your case. One of my earlier doctors looked at me like I was going to be gone the next day. Still here 2.5 years later and doing well and I have a very confident, compassionate onc who's on the ball with everything.
Terri
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Jenn
Good to hear you are going for a second opinion. It's so important that you feel confident in your onc and to know that you have discussed all the treatment options.
Good luck
Laurie x
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CT scan tomorrow. The last one showed Faslodex was working well. Cross fingers and toes for this one!
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Jenn, have hope my dear as while there is life there is always hope. Bone mets are a pain but it is possible to live with them for a long, long time. Good luck with your 'second opinion'.
Tina, fingers, toes and eyes all crossed that the results of your CT are all good!
I'm still doing well and so far the statin is not causing me any problems but I had my check up bloods today so I'll get the answer as to wether it is doing the job of lowering the cholesterol in a couple of days. Here's hoping.
Love n hugs. Chrissy
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Jenn glad you are going for 2nd opinion. It's a little disconcerting when your dr. starts bawling when telling you of your stage IV diagnosis. My GP did the same thing. She's young and really a caring physician but she's used to delivering babies! Anyway, I live in a rural community also and got a 2nd opinion at a big university hospital and they concurred with the treatment I'm getting. It made my parents and myself feel better that I was getting good treatment where I am. I am on Arimidex also but taking Calcium/Vit D supplements. Today I go to onc to get blood work done to see if Arimidex is still working for me. Oh joy! I know you are scared, we all are. But stay with us and you will become a pro with all this crap. You will also find much comfort knowing you are not alone.
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Tina, good luck with CT scan today. I have scanxiety in that I'm extremely claustrophobic! Yikes!
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Tina, Thinking of you today with Mr. CT. Really hoping that you get great results!
Jenn, sounds like a second opinion will give you some peace of mind. I am not sure that I could manage an oncologist who gets all emotional about my diagnosis. Surely that is ONE person that we don't have to take care of emotionally!
Faslodex continues to treat me well. It is a bit miraculous that I feel so well in spite of these marauding cells in my body.
*susan*
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bobkat, this is where I am treatment wise as well, arimidex and Os-cal. I am thinking that this is what they will keep me doing until the bone scans show progression or it moves to another organ (I have only had one set of scans thus far). I think I just want the peace of mind of someone else on my side and maybe even can get a little more information about future possibilities.
Question, when you have the cancer in your bones it makes them more liable to break so I guess you need to be careful of what activities you do...how careful do you need to be, I mean like are really bumpy drives off road or amusement park rides bad? And if the bone density scan is good are your bones still strong? Does that scan have to be poor for your bones to be in danger?
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Jenn I haven't gotten to that point yet with my bones. At least as far as I know. But I do know the AI's will eventually breakdown the bones. Someone with more experience I'm sure will chime in on that. I am very careful nonetheless. With it being winter I'm extra careful when in a parking lot or walkway. My son elbowed me in the wrist the other day (accidentally) and I thought for sure I had broken it, but just bruised. The calcium helps to keep the bones strong. Other gals get bone building injections, and they will let you know about those. As far as off roading I suppose if you were having problems already it may not be a good idea. And amusement rides well I wouldn't know I get motion sick!lol
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Jenn, with mets to the bone, and if treatment is working for you, some if not all the lesions will partially heal ie your body will lay down new bone once the cancer is under control. When my bone mets were found, my left upper arm was so bad it looked like honeycomb on xray and was very close to breaking. In order to strengthen it quickly, a metal rod was put inside the cavity of the bone to prevent that and then I was given radiation to kill off some of the cancer and relieve the pain. Well almost 3 years down the road and witih treatment of both Arimidex and currently Femara, a recent scan showed that bone shows almost no cancer and has healed.
As to being careful, well it's a matter of common sense. I think for me at the time I was dx'd, falling was my greatest threat for broken bones as at that time I was falling....a lot. For you, I think just be careful about being thrown around on the rides and boucing around too hard on bumpy roads.........as I said, common sense.
Love n hugs. Chrissy
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I guess my questions may sound a little silly, so I should be more specific. My bone density scan at this point was fine, spots where the cancer is in my bones are shoulder, pelvis/hips, lower spine. We are going on a cruise in April and I am wondering about excursions. There are a couple 4wd adventures where they caution that the roads may be bumpy. It said it wasn't recommended for pregnant women...I was always so active before this point...hard to slow down and be careful
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With my lumbar and pelvic mets (and also in every other vertebrae besides), I can tell you for sure that there is no way I would go for a bumpy ride in a 4wd! Just short trips around town in my Suburban are enough to make me consider pain meds some days. But you may not be ready to make those concessions yet... have you asked your onc about it?
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Jenn, if they are not recommended for pregnant women and considering your mets are pelvis/hips and lower spine I would think twice before going on them, but the final choice is obviously yours. I agree, it's hard to slow down and not do the things you love.
Love n hugs. Chrissy
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When I was dxed, stage 4 from the beginning, my onc told me no more high or medium impact activities - no running or jogging any more etc. (my mets are on spine.) I suppose the activity people are extra careful w their warnings but would be cautious of any thing that rattles you around. Restrictions do stink!!
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Wow, that does sound like a miracle! Long may it continue so.
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Friends,
Good news for yours truly. The latest CT scan of my lungs shows the metastasis is continuing to shrink and that the other areas in question are stable. The Faslodex is doing its job! I will have a bone scan in a few weeks to check out ongoing pain in my lower back and hip, but my oncologist thinks and I hope it is due to the antihormonal action of Faslodex agravating arthritis or another degenerative condition that showed up on my last bone scan in July. I had my ninth treatment today and am feeling pretty good aside from the usual post-injection pain and the back issues. I am determined to adjust to all of this and not let it run my life, and feel I'm finally doing so. Thank you all for being here and contributing your experiences, feelings, advice, energy, wit and love to this community that is so valuable to so many.
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Yay Tina!!! That is great news!! Long may it stay!!!
Love n hugs. Chrissy
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Finally got news about latest blood counts and the CTC is below 5 so I will not have to start all the rounds of tests until March when they would normally be due. Even though that is now less than a month away, every day I can postpone the dreaded bone scan is good news to me. Verdit for now is that I stay on Femara and Aredia until we see what, if anything shows up in the March round of tests.
Tina - great news for you, so glad to hear it.
Jen - with bone mets it is a dicey situation to be bounced around by any means whether it is 4WD, exercise, horseback riding, amusement rides or whatever. I was told I should no longer do and riding (horses) and I have been doing that longer than I have been walking! Just riding around town with my DH in his car makes my spine and hips hurt for a few days and a bumpy landing of an airline flight will put me close to tears for a few hours until the next round of pain meds take effect. So do be careful and let your body tell you what is enough for you and try not to be like me and always pushing things until you are in real pain. After my last trip I think I have learned to be a little kinder to myself and fly 1st class where the seats are more cushioned.
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Thanks for the post Tina.
I think you may have tipped the boards over into a "good news week" after hovering on a 'MEH' cliff!
Great to hear and Elisimo, you're stacking the good side of the seesaw too!
Onward and upward (through the snow) to a happy weekend.
Chrissy, don't you dare tell me about the sweltering heat in Oz - I have to put up with that from my step-son and FB friends!
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Thank you both Tina2 and Elisimo for posting your good news. Very happy that you are both doing well and may you continue to do so for a very loooooooooooooong time!
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Tina2 and Elisimo, so happy for you guys!
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Yesterday was No 22 for me. My nurse was running behind so I waited in my chair for far longer than usual listening to the sounds of the room. Puts me in a weird head place to be sure. I can pretend for 27 days of the month that cancer is no big deal, but 40 minutes of listening to other patients who aren't doing as well, bursts that bubble.
This is the third time that I have had nausea following the shot. Not sure if it is a reaction to the drugs or being "there." Doesn't really matter. Came home and slept for the entire day. Woke up today, and back to real life.
Tina, I am so happy to hear that the Faslodex is doing its job well for you!
*susan*
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Yes, I am really glad to hear it, too, Tina! That's encouraging for both you AND all of us other double-cheeker chicks out here doing Faslodex. :-)
Susan, 22! Is that count per shot or per round?? The shots make me feel a little woozy around the edges -- not exactly full-on nausea, but more like a murky green fog that settles over my appetite for a few days. Which might not be such a bad thing, considering I still have a boatload of Femara pounds to lose.
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That is per round.... 22 months Faslodex has given me success. I am willing to have some murky, green fog for that! [Love that description, though mine is more like "I am gonna throw up now."]
I would have to do some calculations to figure out how many shots since I started at the single dose and was then "upgraded" to the double.
*susan*
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Susan, did you do an AI before Faslodex? If so, have you noted any difference in the impact on weight gain?
I'm hoping against hope that Faslodex doesn't have the weight gain profile that the AI's do... but I'm afraid anything that keeps us at zero estrogen is just going to thicken us up. Sigh.
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Hello all..just want to check did anyone have issues with eyes after taking femara? like eye flashes and dry eyes..?
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I am on Femara and have some eye issues but hae not associated hemwith the Femara. I have dry eyes nd floaters from previous eye surgery when I was young. Recently I have had some light flashes and the optom. says the flim covering my eye is detathed in a few places so I hae not been able to wear my contats and if I start to have any pain with the flashes to get back to see him immediatly because that would indicte my retnia was detachig. I really don't think any of this is related to the Femera.
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Hi all. I'm going to have my first scan since starting treatment next Friday morning. I know that I'll be anxious and plan to take an Atavan, but am wondering if that's ok given the "no food/drink rule" 8 hours before. I can swallow it dry but just wondered if that's ok.
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