Bone Mets Thread
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jennyunderthesun, I get my Xgeva shot in my arm. I am carefully to use my good arm, not the lymphadema-neuropathy-carpal tunnel arm. For me it feels hot as it's going in and the nurse injects slowly. That discomfort stops as soon as the bandaid is on. I already take Claritin every day, which may help. Read up on that more on here. As to side effects, I can't recall anything different from se's from the Ibrance or letrozole that I take. I was getting Xgeva every month for a year but now I'm going to get it every three months. I'm absolutely certain it helped my innumerable bone mets and glad I get to take it. You will want to tell your dentist that you're taking Xgeva.
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jenny--- I get my Xgeva in my stomach. I really do not feel anything. In addition to strengthening my bones, my ONC said it makes the bones a "less hospitable place for cancer" to thrive. Hope this helps.
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Jenny, I also get my Xgeva shot in the stomach. It is usually totally painless-at worst it's a slight pinch, sometimes I can't even feel it. I get no side effects and do not take anything like Claritin.
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Jenny I get Xgeva every 3 months in my arm. No problems with the shot. Nothing like Faslodex. As for side effects I don’t notice any. I get Herceptin infusion at the same time. My bone mets are stable for past year. Get your teeth checked and tell your dentist about the xgeva . I’ve had no problems with my teeth ..just a good idea.
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I also take xgeva. My question is this. Knowing the bones are less hospitable to the cancer how many of you have had progression while on Xgeva? ? To the bones? ? Or where??
Gailmary
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I'm glad for those of you that can have the xgeva with no problems, I don't have any side effects but it sure does burn like fire going in. Thankfully, as soon as it's over, the burning stops.
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I receive Xgeva in my arm - not sure why they’ve never offered it in my stomach? Burns like mofo in the arm and the last time, something went awry and it hurt extra bad and I had a big sore bruise for 3 weeks
I told the nurse (it’s always a diff one doing the injections) and she chalked it up to that I don’t have enough fat on my body and the bruising nurse must’ve hit my muscle? IDK!!! 😐 I’m small but not a waif over here!
I would love for it to be painless. But it is a two second shot that burns for two seconds and then it’s over and I now receive it only once every three months so not a huge deal.
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I too receive the Xgeva in my arm--the same arm since I had mastectomy and lymph nodes removed on the other side. They have never offered to do anywhere else ??? And I have never asked. It does burn going in but once done quits hurting. When I first started them, I had bone pain for a couple of days after. But now (over a year out) I don't seem to have bone pain after. Now I get the shot every 3months (after 1 year monthly).
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I too receive the Xgeva shot in the arm--the same arm each time since I had a mastectomy and lymph nodes removed from the other side. The nurse has never offered another site.?? It does burn when going in, but soon stops. I had bone pain for a couple of days after at first. But now over 1 year out, no more bone pain after. I now get the shot every 3 months after monthly for the first year.
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you are not supposed to have injections or blood pressure taken on the side of your surgery. I'm horrified at the thought that providers are so lax as not to have told patients to inform nurses which arm to use. Mine ask. Lymphodema can be triggered even if you've never suffered from it if lymph nodes have been removed
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JoE777- I don't know if you misread what I posted or I am misreading what you posted. I have the injections in the opposite arm side. Just the same arm each time since we can only use the one. But... I had read about the lymphedema issue and hold out the correct one for them. They never told me, I just read about it.
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I misread you. Sorry. I have all my pricks on my opposite side also. I have great veins and we all try to take good care of them. Ha! Hopefully all of our new sisters know this important bit of taking care of our traumatized bodies.
J
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i am challenged in this area as I was BILATERAL and both node positive at stage 3.
When I remind the many nurses who treat me that I was bilateral, they/we shrug our shoulders...and carry on. So far no signs of lymphedema.
Time will tell.
Gumdoctor
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Hi All,
With regards to pokes, I specifically asked my MO about bloodwork on the BC side. Given that I am so many years out he indicated there were no concerns. He said there have been studies that back this up. This was good news for me as my veins on my right are much more cooperative. Now I go back and forth depending on how many sticks I expect over a few days.
It might be worth considering a conversation with your MO if you have not recently had lymph nodes removed.
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Regarding the lymph node arm, note that lymphedema showed up for me 16 years after the nodes were removed.... so it does happen.
Love to all,
Lauren
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ok ladies. I still don’t know what is going on with my numb chin and side of my face. Now my front teeth are shifting and shooting pains straight up toward my nose in my maxillary bone. It hurts so bad. While I was in the hospital for 13 days, they ran every kind of test you could think of except a PET. My mind isn’t working right. I’m foggy headed, can’t think straight, can’t think of words, vertigo really bad, sick at my stomach all the time and I feel like I’m car sick. So, I went to an oral maxilofacial surgeon who said there’s nothing wrong with my teeth. No cavaties or anything abscesses. So, this Thursday I have another MRI scan of my brain. I also have knots on the side and back of my neck. Ican stand the sick at my stomach, but not this vertigo! Ughhhhh!😩 In the hospital I had high iv antibiotics. I’m on my second set of antibiotics after being discharged! I want to figure out what’s going on and get it fixed! I am soooooo frustrated! Anyone have any ideas? Thank you in advance!! God bless!😘 Hugs to each of you!
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TN, I can’t recall - do you have Mets in your spine? scalp? I’m sure they checked to see if Mets are pressing major nerves
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does any of your therapy cause necrosis of the jaw
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TNMTNGAL, are you on Xgeva?
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Dear TMN----- I have no thoughts on might be going on with you. I'm not very knowledge about all of this. But I DO know how to storm the gates of heaven with prayers, and that my friend, I am doing for you. Wish I could give you a big hug in person.
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TN, I’m so sorry to read about your predicament. Unfortunately I don’t have any experience with the symptoms you’ve described.
it might be wise to seek a second opinion from a totally different health care center. Oncology doctors are all in strong denial and totally dissociated from the damages and side effects of their treatments, even from the well know ones listed by the manufacturers of the medications.
I guess it's a way to stay sane after more than a century of total failure. Unfortunately, so far, cancer has outsmarted them all....something that they and we patients,have to live with everyday....
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They’ve not looked for anything pressing on the nerves leading to my jaw. They did find a “coursing vascular structure” between my ear and brain, but haven’t done any biopsies or anything. They found it 6 weeks ago. He’s repeating the mri to see if it’s grown. (Neurologist)
I’m not on anything right now. They took me off of Arimidex last year to see if my side effects got better. Things just keep getting worse.
Snooki...thank you for the prayers! I can use all I get!
Miaomix...I’m seriously thinking of getting a second opinion!
Thank you all for the love and support!
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Got a call today...I was supposed to have an mri this evening, ordered by my regular dr. and one tomorrow for my neurologist. So, they’ve combined the two. I hate that it’s on a Friday because everyone here knows the “waiting game”. Symptoms still strong. I hate this feeling. I pray and have my fingers crossed that they find what is causing all this and are able to do something...anything!
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TNMTN, adding my name to list of well-wishers. The many ways this disease runs off the rails is mind-boggling. Here's hoping tomorrow's MRI will provide some answers. We'll be there holding your hand.
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TNMTN - Put me in prayer circle too.... I’ll be thinking of you tomorrow. Maybe you’ll get lucky and get end of day results? Weekend waiting is the worst. Many prayers for you.....
Love to all,
Laure
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sending love and tons of positive thoughts to everyone especially MTN and Jaylea!!!!
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hello Jenny - my oncologist wants to treat me with Xgeva and zometa. Have you experienced any side effects from any meds you have been given
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I didn’t know you could use both together. I thought there was a fear of this leading to too low calcium. I used a different bisphosphonate - pamidronate - it gave me many side effects - lymphocytopenia with fever, flu-like symptoms and almost unbearable myalgia. I changed then to xgeva. I had my first injection two weeks ago. I started with nausea about 2 days after the injection which improved over the days but a few days ago the pain in the areas with metastasis increased considerably. I’m taking hydromorphone for it.
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Rosilene, I'm sorry you've been in pain. Thanks for sharing this.Always useful to know what may be ahead...
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AMP47, I don’t start Xgeva until the 25th, so I can’t speak for that one yet. In my case, I’m hoping it will mend up a really compromised rib and tell the mets to go away...
Also on Lupron, faslodex (some fatigue, nausea and injection site pain so far), and ibrance (just started two days ago).
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