Bone Mets Thread
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Diana, I'm pretty sure xgeva heals the bone too. I hope your rads are doing the trick and I can't wait to hear the results! My spinal mets are L1 L2 T6 T12 and the onc said they are tiny but I don't know what the size actually is. I will have scans in jan (6 months after treatment started) and anxious to see what has happened to them by that time. I have had no pain at all so far and so far no SEs from the AI except a hot flash once in awhile, not even once a day. Oh except constipation. I feel pretty lucky about that and hope it stays that way!
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lanagraves -
I hear what you are saying. Sometimes our docs are not familiar with the SEs that we experience from our treatments. Just because the rad doc said no bone pain when bones are healing I'll take it from the experience of other women that sometimes that is not the case. Thanks for sharing the info.0 -
Thanks Chrissy and Diana, The nausea was much better today after having it for three weeks. I had Zometa on Monday and had flu systems for three days. I get a saline infusion with my Zometa as I had a high fever with my first one and ended up in the hospital. Not sure about the Lexapro. It seems to make me really sleepy. Is there a difference between Femara and Arimidex?
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Was on arimidex for 6 years. Just started femera but seems to be gentle compared to arimidex. Who knows. If it shuts down estrogen who cares.
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Barb. Try an advil. Really helped me
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Barb I was on Arimidex for a year before being changed to Femara. They both belong to a group of medications known as Aromatse inhibitors so they basically do the same thing but I have found that the Femara seems to be much gentler on the SE's for me.
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I am feeling really bad again this morning. I am going to stop Arimidix until my next appt. Nov. 1st. I will ask my onc. for a prescription of Femara. I hope he goes along with it. If not, I will get a new onncologist. Thanks again. Barb
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Has anyone heard anything about the MBCN conference in Chicago on 10/13?
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Barb, I heard that a member of BCO by the name of LuAnne went to that conference. She found the information very interesting. I guess if you want to know more you could always PM her and ask.
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Barb,
If the lexapro makes you sleepy then take it at night. I take 30 mg and it's part of my nighttime meds. I have no problems with it during the day.0 -
K-Lo also went to the conference. She made a thread about it but I forget the name of it. I think its a good idea to ask if uu can switch to the femara. It seems a lot of people have less probs with it and I think it works just as well. I have so few SE from it that I worry its not working. Sorry u are feeling bad Barb. Maybe I mentioned it before but I am taking boswellia and turmeric which are both anti inflammatory and I thought maybe that is why I don't have SEs.
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Hi all, I will post a separate thread, but here are notes, etc from the conference:
MBCN’s 6th Annual National Conference (“Moving Forward With Metastatic Breast Cancer,”) took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago. In a few weeks, videos and presentation handouts will be posted at MBCN.org. In the interim, here are some highlights from selected breakout sessions, from attendee Pam Breakey. Pam is a long-time participant on the BC.Mets.org site and, as you will see, takes wonderful notes.
Pam's Notes Part One: General Sessions:
http://mbcnbuzz.wordpress.com/2012/10/25/pam-breakeys-mbcn-chicago-notebook-part-1-general-sessions/Pam's Notes Part Two: Selected Breakout Sessions:
http://mbcnbuzz.wordpress.com/2012/10/26/pam-breakeys-mbcn-chicago-notebook-part-2-selected-breakout-sessions/We were honored to have Medical Lessons blogger and Atlantic correspondent Elaine Schattner join us.
Read her great article for the Atlantic here.
In other conference news, MBCN presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award.
Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials,
researchers typically are trying to determine if a drug shrinks metastases.
“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.” Steeg referenced a perspective piece, “The Right Trials,” she wrote for Nature this past May.“The proposal I’ve put forth should apply to a number of different cancers, particularly those where the majority of patients are diagnosed before they have full-blown metastatic disease, or if they have limited, treatable metastatic disease,” Steeg told NCI Cancer Bulletin this past June. “One could imagine applying this to prostate, bladder, and colon cancers.”
Awesome conference photographs, courtesy of Ellen Averick Schor are Here.
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Thanks English for posting links to all that info. It sounds like there is some pretty interesting stuff coming out of the laboratories.
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Does anyone one with spinal mets on arimidex have tingling or numbness in there fingers? If not does anyone have an idea why?
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Redroan if your mets are high on your spine there may be some impingement of nerves which will give you the tingling. I haven't heard that the AI's have that SE.
Love n hugs. Chrissy0 -
Thank you Chrissy, You are always there arnt you? I do have some high in cervical area so I guess that is probably what it is. It is not painful just annoying. Thanks for the info. I did ask my Onc about it and he was not real concerned but is doing another ct next month. which is a lot sooner then I thought he would. So I guess I wait and see. He said I could do MRI if wanted but I don't know it that is necessary, It isn't painful just weird. Thanks again.
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I thought I was having a heart attack Monday AM and went to the ER. They admitted me and to make a long story short I did not have a heart attack or a stroke. Had a brain MRI yesterday and thank goodness it was clear. The hospital doc ordered an IV of Protonix and after a month of suffering with nausea and burning in my stomach I am fine.(Gastritis) My onc. came in to see me and I told him I was feeling so much better and he mentioned the Protonix. (why not a month ago) He said I needed to stay on Arimidex. He said he would switch me to Femura if I wanted but it was basically the same drug. Cardio doc said it is a powerful pill, but I really have no choice. He also said it can cause blood clots. As long as I am not sick to my stomach, I will deal with this. I wanted to let everyone know about the Protonix if you are having naseau or stomach problems. Tonight my sig. other and I are going to Octoberfest and I will have a glass of German beer. (maybe a couple) I live in an area of 90,000 retired folks and life is good. Maybe I will start playing golf again. It is amazing my new attitude without nausea. Happy Halloween everyone.
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So glad you got relief from the stomach issues! What a change in attitude that has given you! It sure is amazing when we can get relief from some of these things. It's like a lead blanket gets lifted off.
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I have never gotten a Grade on my diagnosis. Maybe, how many mets you have? Also, what is difference between HER2 negative or positive. One of the nurses in the hospital mentioned that it meant fast or slow growing.
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Barb i never got a grade either i think maybe its because we didnt have surgery? Or at least i know i didnt, didnt see any listed on your signature. As far as the her+ or - the only thing i really know about it is if her+ then we get herceptin and if not we dont. Hope that helps
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Her2+ is far more aggressive and faster growing than Her2-. Prior to the introduction of Herceptin Her2+ was impossible to treat so it was pretty much guaranteed that it would come back quickly.
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I went to the onc today and he switched me to Aromasin. My SE's went away because I stopped taking the Arimidex for 4 days. I had one great day on Tuesday and before I left the hospital they put me on Arimidex convincing me that was not the problem. Keeping my fingers crossed that Aromasin is my answer.
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I've been on Zometa for over a year and now will be changing to Xgeva. Has anyone else made this change? If so, did you have any side effects? Also, has anyone had hypocalcemia while taking Xgeva - read it's a frequest side effect?
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I started with Xgeva 7 months ago and have no side effects.
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I have been on Xgeva for almost a year. I feel noticeably achier and more fatigued the week after the injection, but it is definitely doable.
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I have had 4 Xgeva shots so far. Ni side effects at all except the 3rd one I was very exhausted the day of the shot and the day after. Didn't have that the last time though. I don't know what the difference was except that with the one that made me tired she stabbed the needle in. I've only had one blood test since starting it, which was after 2 shots, and my calcium was exactly the same. I take 600 mg a day but sometimes I blow it off, esp on weekends. Its not a bad shot at all imo and I would think much better than getting an infusion.
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I appreciate all of your inputs ... thank you. I'm a bit worried about the one possible side effect of having low calcium as it can be dangerous, but, that's what labs are for!! Thanks again.
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Horsetail helps retain the cacium in your body. Recommended by Lowrider54, I used it for 3 month, so far so good.
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Never heard of horsetail ... thanks ..
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bump
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