Bone Mets Thread
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I believe this is great news to ALL. Why haven't we heard more about this drug. WOW
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Looks very interesting - and promising for triple negative! That's what I was looking for!!!!
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Exactly. Hopefully we can try this through our Oncologist instead of a clinical trial.
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I need some help understanding the difference between Xgeva and Zometa, and the timing of those in treatment. Is it the standard practice for pre-menopausal to use Xgeva and then move on to Zometa
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Thank you Dee. I thought it would be worthwhile to post this info. Some of you may remember I fell into anaphylactic shock at my last CT scan with contrast. The dye product was Isovue. I was tested successfully with Visipaque today which is another alternative for dye contrast. Isovue is the most common contrast used, but it's good to know there are other alternatives.
Jennifer - Zometa or Xgeva can be used regardless of the menopausal status.
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Jen all I know is zometta is older and for me was less espensive. My MO is a bit conservative in that he likes older meds that have a longer track record. But some MO s prefer xgeva.
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Dee, I am very late jumping in. I reiterate all the others have said. And wanted to tell you that there will be deep heart felt prayers and positive vibes coming your way. Saturday at 5:45 bc time, I will raise my glass and say cheers to Dee
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Dee-please don't stress at this point. Hopefully the uptake on the bone scan is healing. Remember the important fact- no new lesions.
I'm sorry about the dinner you had planned. We need to enjoy our lives!!!! Reschedule it!!!
Babs
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that's what I'm on Deanna together with Faslodex. Get my first ct scan tomorrow I'll let you ladies know if it helped.
Wendy
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Hi Dee, no new foci is good. I agree with the recommendations for further testing. When my hip met was healing, it ached so much I thought for sure I was having progression but I didn't. I had a 6 cm tumor and a fracture. They both healed, with no rads. So you just don't know. Hang in there. Let us know how it goes with your MO. Dana
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holding good thoughts for you Wendy
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Wendy hoping for good scans for you🙏
Babs
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Wendy, I am sending good vibes for your bone scan. How is your sister doing? Is she in treatment now?
LindaE, will you be have scans with Visapaque from now on? I had a ct scan last week, and I thought of you as soon as the contrast started entering my body. I can only imagine how frightening it must have been for you. I am just glad you recovered.
Mary, since you mentioned that Zometa is less expensive than Xgeva, I thought I would share my recent experience. As some of you know, I switched treatment facilities and stayed with my onc when heleft the cancer center I was going to. I have been reviewing EOB's from my insurance company, and I noticed that the cost of my Zometa infusions at the new facility are half of what they were in the old one. It makes no sense to me. I don't pay anything for it anyway, but still...
Lynne
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Jen - Xgeva and Zometa are an either/or situation. You don't go from one to the other unless you do it for reasons of cost. Xgeva is a shot into fat that does take a couple of minutes whilst Zometa is infused into a vein and takes at least 15 minutes. Xgeva is generally slightly superior to Zometa for the avoidance of complications due to bone metastases.
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Lynne - really not sure anymore about the Visipaque. Everything was fine yesterday and this morning I felt flushed and the skin of my neck felt "thick" when I turned my head. Didn't pay much attention to it, went about doing a few things and then when I looked at myself in the mirror, my face was puffy and red, non-itchy rash on my face, neck, torso and back. I didn't want to take Benadryl because I had a long drive this morning, but the rash was spreading all over. Took Benadryl as soon as I got home. I don't think I'm out of the woods just yet with dye contrast. To be followed...
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Hi all!
MO called last night to say that she is ordering a full body CT to be done before my appt with her on the 30th. So today I will have my infusion, tomorrow night is the brain MRI, Tuesday is my TM's. So we seem to have a plan. It will be good to have definitive answers for the pain & headaches. I am hoping that all of you are right, that no new foci means healing not progression.
Unfortunately I had to cancel my DH's surprise birthday party for Saturday night because the only time they had to get me in for an MRI was 5:45pm on Saturday. He is such a good sport about it, he had no idea what I was planning. So the take away from this seems to be, don't plan anything! I'm not starting to plan our big trip until I get some answers & whether we will have a new treatment plan or whether the old one is still working. Thanks everyone for your support, dee
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GG27 - i've been following this and greatly relieved to see you get more testing. once you have it, can you get a second opinion? this is a really important decision.
so far i feel that you have very weak evidence of progression. and possibly evidence of healing. google flare bone scan. you can start with this article.
if it's not a fast growing cancer can you wait a couple months and re-test before you change? it's very hard to interpret small changes in a CT, impossible without a baseline. do you have a baseline ct to compare this to?
i don't need to explain the issues with changing treatments prematurely.
my prayers join everyone else's that this little flare turns out to be healing.
>Z<
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Jennifer . Regarding Zometta vs X-Geva. Both basically work same, given once a month for a year if u have bone mets, then studies have shown u can go every 3 months. Zometta is significantly cheaper give IV over 30 min. X-Geva is given subcutaneous injection. I started w/Zometta but after kept waiting 2 1/2 hrs due to understaffing I requested change to X Geva. 1st X-Geva leaked out & I was shocked to get bill, like $10,000
I went back to Zometta when I changed MO. When I get it I also get a liter of Saline, because I am usually dehydrated & it makes me feel better. Also works into port flush time. Others have experienced SE from both drugs, but I never have. Hope that helps. Su
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Dee, I am sending good thoughts to you since you are probably on your way to your MRI appointment right now. I hope that the results of the MRI and the upcoming CT scan are good and that your TMs are where they should be. I will be thinking of you at 5:45 your time.
Lynne
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LindaE, how are you feeling? Have you recovered from the effects of Visipaque? I hope things improved and didn't get worse.
Lindalou, When is your DH scheduled to have his next scan? Is that still a few weeks away?
Lynne
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Jen, I take Zometa every 3 months. I've read on the boards from ladies who said to ask for infusions of at least 30 minutes to avoid SEs. That's what I get and I've never had any problems, although my nurse said it is very hard on the kidneys, so they also end with fluids, and tell me I must hydrate as well which I do. I think it's an MO's preference as to Xgeva or Zometa. My MO said she chose Zometa because her experience with it has shown it helps deter and heal bone mets.
Linda, hoping your rash has resolved. Dee and Wendy, sending you positive energy, hugs and best wishes for healing news and no progression! Thanks to all who provided links to the positive studies.
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Hi all!
It's been the kind of week where is something is going to go wrong it absolutely will. Trying to come home on the ferry last night after my infusion was really busy, we were trying for the 5pm which we weren't even close, on the 6:10 we were the second to the last car not taken, so ended up on the 7:20 which was running late, so we got home around 8pm, not too bad, it only took 7 hours for a 2 1/2 hour appt. argh!
Tonight we went over for my 5:45 appt, got there early & the sweet young tech asst, goes through my paperwork & tells me that they absolutely cannot do the contrast through my port as there is no one to do it?! This is a hospital with RN's and everything. I explained that they were not going to be sticking iv's in my arms, so could I go down to daycare where they give me my infusion. Nope. Finally after explaining where we'd traveled from, how my DH's surprise BD party was canceled 2 days earlier to make this appt, she went in search of someone. Surprisingly, she was able to find someone within 3 minutes.
By this time I was quite frantic & the ativan had worn off so I had to take another one & wait for it to kick in, all the while trying to calm myself with this stupid mask over my face & my head wedged into the holder. It was crazy hot in there, which makes me anxious. All in all I didn't think I was going to be able to do it, but finally the ativan kicked in & the cool air was turned up and I did it. So much stress, I hope it tells me something.
I'm sorry if I missed some posts, I just wanted to let you all know how it went. I must go to bed now, I can still feel the effects of the ativan 5 hours later. night all, cheers, dee
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Linda Is your rash better today? You have been through enough with allergic reactions. So now what? So frustrating for you.
Dee, Crazy couple of days for you to say the least. I'm glad to hear that you were still able to get the MRI done. Good for you for standing up and getting the scan. I don't like the MRI head holder either but it sure keeps the body still even with our breathing. How are you feeling from the infusion?
Wendy, any scan news?
Lynne, Did I miss your CT results? My dh will have lab middle of June. So far only lab. His last bone scan was a year ago but at that time his PSA was <.1 and it was a baseline after his surgery. He will see his MO in June as well which is good. He won't talk to me about how he is feeling. Does your dh talk to you about how he feels ( emotionally that is) Is he still on a good recovery path now?
Good Sunday to all.....
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Good morning all,
Dee - what a day! You must be exhausted. Hoping to hear good news.
Wendy - waiting with you for results.
Thanks to all checking on me. The rash is gone and barely noticeable swelling on my face this morning. I think I can stop Benadryl today. I decided no more contrast for CTs, don't want any of that stuff going down my veins again. They had not warned me about a possible reaction, even my nurse was surprised. I'll settle for CTs without contrast and abdominal ultrasounds in future. I'm getting a free peeling on my face from all the stretching of swelling, but at least I'm presentable today LOL!
Good Sunday to all!
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Dee, I hope you have recovered from yesterday's long day. Take it easy today.
Lindalou, I hope your DH's lab results are good next month. My DH doesn't really talk about how he feels either. I don't know if he is hiding his feelings, is in denial, or is just optimistic, but he says he believes he is going to be just fine. I am already worried about his October CT scan because I know he is at a high risk of recurrence, but he is not worried. It is odd, but I worry about him more than about myself. He is actually doing very well now. He has an appointment on Tuesday with GI doc to discuss a date to remove the stent in his bile duct. It will be an outpatient procedure. Once that is done, we can close the door on all those miserable post-surgery complications. My CT scan was just urology scan. During scans when I was diagnosed with MBC last year, they discovered that my left kidney was non-functioning. Since then, I have been seeing a urologist on a regular basis (because I didn't have enough dr's appointments already). Two months ago she detected blood in my urine. A test for cancer cells came back negative, but the blood is still there, so next step was urology CT scan. This scan has much more detail about the renal structure. The urologist has been great. She called me last Saturday to let me know that she had the results and that the left kidney was unchanged, BUT I have a new large kidney stone in my right kidney. She still wanted to look at the scan itself before discussing more, so she called back on Monday. The kidney stone is too big to,pass on it's own, so it will have to be blasted with a laser. I was hoping for sound waves because it is less invasive, but uro said that it is harder on kidney, and since I only have one kidney, she will do laser instead. She went on to say that radiologist thought that the left kidney, which is not kidney tissue, just cystic tissue, is XGP. Uro had thought it was embryotic, but we will discuss when I see her on Thursday. She will walk through the scan with me. Even if it is XGP, there is no active infection, so she won't treat it right now. That is fine with me since my research points to nephrectomy as treatment. After seeing the scan report myself, I have lots of questions for her.
I hope everyone is doing well.
Lynne
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LindaE, I am glad you are recovering from that reaction, but good grief. Enough is enough! I don't know about that free face peel. I feel like my skin is already so dry from lack of estrogen that I am running out of layers there.
Lynne
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Hello all,
Dee that sounds like quit the ride I've been hearing on the radio about the ferries not fun. It's funny when you are sweetness and friendliness here sometimes we get plowed over. Good that you got your MRI done after all . Now like me you have the crappy part....waiting for results. I hope they get back to you so you can relax again. August 13-14 I will be in Victoria for the big regatta (if I still can) maybe we could manage a coffee . Anyway take good care of yourself you deserve a spoiling day.
My sister is still waiting on her second biopsy results and I believe she will be having her first appointment with her onc on Wednesday. She has been waiting forever and I think because of me she has been putting it off as long as she can. I will be getting my scan results on Thursday hate these appointments. The last pet scan result I got from a twenty year old intern was not impressed. All the false platitudes made me want to strangle her. I'm so sorry Wendy blah blah all I kept thinking was where the hell is my doctor. Yeah I know they need to learn ,but why is it always me.
Wish all you lovely ladies a great Sunday.
Wendy
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Dee. Glad you were able to get the scan done sorry you had so much stress about it. It's all so stressful as it is we don't more stress by our healthcare!!!!
I hope you're relaxed today! Do something fun!!
Babs
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Dee, I gripe about living an hour's drive from our cancer center (sometimes way more than that if a particularly bad traffic day), but then I see what logistics you go through to get to your visits and feel ashamed of myself. I guess there is a price to pay for our remote but quiet living, huh? I'm glad you got through the scan okay and that the Ativan did its job. I hope this scan shows nothing but positive things so that you can move on with the planning of your big trip. Have you taken your car out for a good scream into the open air recently? That is so therapeutic that I think maybe I should do it myself today! :-)
LindaE, sorry to hear that this form of contrast is trouble for you, also. I'm glad you got through this one okay and hope your scan results are good. I have several medication allergies that cause anaphylaxis and hives, and that's a scary and helpless situation, for sure. I'm sorry you have to deal with it.
It seems like the Zometa/Xgeva topic is coming up a lot lately. I refused mine the other day, but will take one or the other next month for sure. I only see the oncologist every eight weeks right now, and my visit the other day was Zoladex shot only. I'm starting to think that maybe it isn't the Xgeva that is responsible for the extreme fatigue as it really isn't abating much, even over 60 days post the last shot. Speaking of shots, I get Zoladex monthly. The first shot nurse I had at my cancer center insisted that Emla or lidocaine would be contraindicated with the shot and would cause it to burn more, so I've been struggling through these things for months with no anesthetic, one time even getting the spring caught in my abdomen...ouch. Last month, a new nurse told me to get the Emla, and I used it for the first time last week. A third nurse this time told me that at another cancer center in town they even give a shot of lidocaine before the Zoladex shot. Now I'm really miffed that the first shot nurse (who I call Nurse Ratchet, not for her personality, as she's very nice, but for her technique) made me so scared of these darn shots. If anyone else is being forced to have this shot with no numbing cream, ask for a prescription for Emla cream. I think it took away about 75% of the discomfort.
My next scan is coming up on June 6. I'm nervous about this one, mostly because I am just so darn tired and sleeping so much more than my activity level would dictate, plus as time goes by, one wonders when their time will be up on a particular treatment. It's only been about six months on Femara, and I hope I get much longer than that. I'm not on Ibrance, and I wonder if I should be. I had only one bone met that then resolved itself by the following scan, after radiation and starting Femara, but then I see that others in my same situation were given Ibrance from the start. My doc says she will give it to me with Faslodex if/when there is progression. I just hope she knows what she is doing. I really need to get some energy and go get a second opinion, just for my own sanity.
I want to say thanks to all who share here. I don't post a lot, but I read everything, and I have learned so much from all of you. We have a really great bunch here, so much so that sometimes I wonder why seemingly all the best people get cancer. ;-) I hope all of you have a good week filled with good memories and as little pain and side effects as possible!
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I am feeling down today. I am coming to my friends here because only you understand how I feel.Losing Diana and Nancy so close together has hit me hard. They were both optimistic, caring women who offered support to anyone who needed it. They both lived each day to the fullest and enjoyed every hug, every trip, every adventure, every experience, every friendship. They were givers, both on and of these discussion boards. I feel that I have done too much taking here and not enough giving. I hope I can improve. Life is too short regardless of how many years we are given. I hate cancer and what it does to so many people.
Lynne
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