Bone Mets Thread
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There is no reason for any of us to be in pain. My onc is very willing to help me learn how to control the pain. For quite awhile I tried to stay away from narcotics but when extra stength tylenole or ibuprofen 800 stopped working for me I had to switch to a narcotic. I take one every 4- 6 hours for pain and since I am developing a tolerance I can still function. (took a chance testerday and actually drove the car with no problem) The worse thing I find about pain meds is the side effect of constipation, so I take another pill a stool softner. I was never one much for taking pills and now I have a closet that looks like a pharmacy.
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Thanks, Chrissy:
It doesn't get me high, or anything, just drowsy. Thanks for clarifying things for me.
Love, Laura
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My pain is still controlled by ibuprofen, but I'll sure use something stronger when I need it. Narcotic pain medicine makes me nauseated, but I think we nan take zofran or some other anti nausea medicine for that. I've been going to a thread about Hospice, and I understand that they can control our pain pretty well at the end. I got comfort from that knowledge.
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Just wanted to say thanks to you all for sharing your knowledge. You have no idea how much this thread has helped me since beginning this journey. Hugs to you all.
Caryn..lol...the tatoo's hurt like heck. I agree with you about needles.lol.0 -
I haven't been here for a while but wanted to check in and say hi to everyone. I'm doing ok. I have an appointment on july 8th and am praying that the arimidex is doing it's thing. It's difficult sometimes but we have to stay positive and be supportive. I try not to google and read about bone mets prognosis but every once in a while- I do. It doesn't help. I get more encouragement from the Word and you all.
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Hi all, I have had some wonderful news. I have been on abraxane and the onc told me last week the cancer in my spine in multiple areas is shrinking and the bones are re growing! Also all the fluid around lung has gone which shows cancer in mediastinal lymph nodes is inactive. Tumor markers are still the same. I will continue with chemo till nd of July and have another ct scan to see how I m traveling. Am very happy nd generally great except for hair loss. I hope you are all doing well or yet to receive good news also. Gosh I was planning my funeral before Christmas, I was so ill using a walking frame and breathless, it's so wonderful to think I may have sn extended lifespan. Yay! Love Gail
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Gail, what wonderful news! Enjoy your health. The hair will grow back, and it's kind of fun to spike it up and feel free and stylin' while it's real short.
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Gail great news enjoy life. Hair will grow back. I am so happy the treatment is working.
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I am thinking of taking a week holiday from Aromasin because my morning nausea is startng again. Just like it did on Arimidex. Anyone else ever do this? Just want to se if this is the problem. It might be anxiety.
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Barb,
I had to switch taking Femara at night instead of in the morning, because it made me a bit nauseous.
Terri
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Thank you, I really found that most helpful! Tash x
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I took Arimidex for a year and now am on Aromasin and have not had an issue with naseau with either. That said, I take my medication in the late afternoon each day.
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Hi all,
Had another bone scan today to check if the xeloda is working. Last bone scan after 3 rounds showed a small new spot on my spine but we went ahead and did 2 more rounds. The past 2 weeks I've had new pain in my thigh, a deep pain that hasn't gone away. Also right ribs hurting for the past few months. Anxious to get the results tomorrow. Can anyone with mets to the femur tell me if you had any symptoms prior to the dx? You know how any new pain that doesn't go away can freak you out. New pain could just be the meds too, right. Thanks!
Linda
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I had mets to the femur, hip, and SI joint, so it's hard to say what was causing the pain. I had pain off and on all down my right leg for about a year before the diagnosis.
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Okay, thanks for the info. Ive got mets to both hips, spine and SI joint too b ut this pain is like someone hit me with a hammer in a spot midway between the knee and top of the leg and it is painful to the touch with no shooting pains down the leg. I don't have any swelling or redness like sometimes with a blood clot. Its like, where in the world did this pain come from?
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That's a lot different from my pain, a lot worse, and my mets were bad enough to require surgery. I know there are many different pain experiences, but maybe your pain is from something other than mets. Let's hope.
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Thanks Mary, keeping my fingers crossed it goes away. Bone scan may tell me tomorrow but I haven't had too much confidence in those since my MRI's have shown mets in the bone where the bone scan didn't. I guess even if its new spots, the treatment might not be any different... I might need to take a xanax tonight to sleep till I get the results tomorrow...lol
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RangerMom, I hope you hear good news tomorrow. I will be keeping you in my thoughts and prayers.
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RangerMom, I agree with you about the bone scans - they don't show mets like the MRI does. For me, only one cervical mets showed up on the bone scan while the MRI showed mets in other areas of the spine. I don't think the treatment will change - I get Faslodex and Xgeva shots every month.
Good luck with your scans.
Desi.
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good news, no new lesions comparing to the last bone scan 2 months ago. Nothing has grown and nothing smaller but I'll take it. stable is good - Yeah
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Gail and RangerMom, great news for both of you! Hooray!
NYCchutzpah, you cracked me up with the description of your pharmacy! I also went from no pills (used to take vitamins, quit that after a while as my diet is sufficient for normal nutrition, prior to BC) to a drawer FULL of pills... I also find the constipation occasionally is a problem, use store brand of Miralax.
Laura, as mentioned before, stage IV requires you treat the pain, don't worry about addiction. I used to teach an advanced pain management class for pharmacy students, and the biggest thing about managing pain is to KEEP AHEAD OF IT! Don't let it get to a level 7 before you take anything. (OK, this is a "do as I say, not as I do" post). When your pain gets to a level 4 or 5, TREAT IT! You will actually use LESS medication overall if you address it earlier rather than letting it get really bad, because then you are playting catch-up, it takes longer to get it under control.
I have never had pain from bone mets - have some in cervical spine and lumbar (questionable), but have had lots of neck issues throughout my life. MO started me on zometa, I asked if I could just do one of the oral bisphosphanates, but she said no, there is some evidence that zometa may indeed have an effect on the bone environment that inhibits cancer cells in addition to strengthening the bone. She is using every 2 months, I had #3 last week, spend July 4 sort of comatose in front of the TV all day, then suddenly felt better that evening. I wonder why this flu-like syndrome occurs - hits me hard, then resolves very quickly once it starts improving. I did read that Xgeva may be better, it is given under the skin as an injection rather than IV (IVs are tough these days, LE arm had the only good veins and those are no longer available), has similar SEs but at about half the rate, but the risk of jaw problems is slightly higher. So I am going with her recommendation for now, as long as we can get an IV in every couple of months. I don't know how long she wants me on it - I need to ask.
I have not had PET scan since Jan, and MO not pushing for one as she is following local recurrence nodules clinically, and I also don't want to get too much additional radiation if we can avoid it. She suggested maybe CT with contrast, but I don't do well with the iodine contrast medium, so declined. She has not suggested bone scan, but I suspect she might in the future. How many of you have bone scans? How often? What is your experience like - pain, discomfort, etc.? Anyone able to compare bone scan with CT scans or PET scans?0 -
I had a bone scan in January, before my hip surgery. It didn't show any lesions other than the hip. I had a PET scan in early February, which showed a large lesion in my ilium, near the SI joint. I asked the MO why the bone scan didn't show it, and he said probably the image was too small to separate two lesions that were that close. I had another bone scan a couple of weeks ago. This was a different, more sensitive scan--a bone/PET scan, which also showed a small lesion on my scapula. I don't know if the earlier PET scan missed it or if it's new. Anyway, my MO said the newer bone scan is the best test for bone mets.
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Hey everyone - I've been coming here for a month or so for my mom, who is stage IV and decided it's time to join. We're pretty sure it's breast cancer, but they're still saying the liver biopsy she had a week and a half ago is inconclusive. We know it's cancer, stage IV (seems like it's spread everywhere), carcinoma, and ER+. Mom had breast cancer back in 2000, went through chemo, radiation, partial mastectomy, hormone therapy, etc. and we thought we were clear until a month ago. She has mets in her adrenal gland, left lung, liver, sacrum, L1 lumbar, several areas of lymph nodes, skull, and it was in her hip/femur, but she had hip replacement surgery last week that removed those areas for now. Not fun typing that list!
She's had back/hip pain that has increased over the past couple of years to the point that she was supposed to have back surgery at the end of June. The orthopedic surgeon ordered an MRI since it had been a year and a half since Mom's last. That revealed the first 3 tumors and the list has grown from there. So instead of back surgery, we had hip replacement surgery at the end of June because her hip was partially fractured and on the verge of completely fracturing due to the tumor on the hip and femur. Anyhow, Mom is not very internet savvy or really into researching any of this, so that's my role.
Linda-n3 (or anyone else with knowledge), we're supposed to start zometa on Monday and I wanted to prepare Mom as best as I could. She went through chemo the first time around so she knows and dreads that process. So, zometa wipes you out and gives you flu-like symptoms, but just an 8-12 hour sort of thing? Do you know if that's common? Also, you mentioned that it's a monthly thing for you, just wondered if that's the normal frequency of the treatments and it sounds like it is something you continue to receive while doing chemo?
You are all great. Thanks for all of your posts here, I've learned so much from everyone on these boards!
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Athensgirl, I have been on zometa for a bit over a year. I get it once a month and eventually my onc said I will get it every three months. Zometa is suppose help heal bones and everyone is different when it comes to side effects. Some people get bad se while others are fine. Me personally I was getting flu symptoms in the beginning know I al fine. Hope all the best for your mom.
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I had 3 rounds of Zometa but had to stop because of jaw pain. I couldn't determine if it was from clenching my teeth at night or from the Zometa but when I mentioned it to my MO he took me off it.
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Beachbum, I hope your mother's tx plan works well for her with minimal SEs. What will she be doing aside from Zometa? I've been on Zometa since March (once a month infusions). I had the flu-like thing for about a day after the first infusion, less time and milder after the second, and none since them. Onco nurse said that's common.
Best of luck.
Leah
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The side-effects from the infusion usually only happen the first time. Second and third times get better and they eventually disappear. I was one of the 50% (unlucky) who got the bone aches after the first infusion. Ugh. Luckily I had some oxy on hand and it took care of them. They only lasted 24 hours. Second (and subsequent) infusions, nothing.
I hope your Mom does well.
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Wow I just saw my mo and she told me she expects me to be around for at least 15 years or more. That really helped me hearing that. She and her staff are wonderful people. She assured me that when the time comes and there is no more to be done she will let me know, but they are coming up with new treatments everyday. It really is nice to have a mo who truly cares about their patients. I feel blessed to have found her.
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Thanks for the info everyone. Good to pass along to Mom and to have a heads up if Monday may be a rough day stomach-wise.
Leah_S - Mom has already had a round of 10 radiation treatments on her back and probably 4-5 on her hip. They stopped the hip treatments prior to her hip replacement surgery. The hip surgery made a huge difference in Mom's pain levels and mobility (she had essentially become bed-ridden in the weeks leading up to it). We have a consultation with the Radiation Oncologist tomorrow to talk about picking back up the radiation on the hip and also radiation for a tumor on Mom's skull.
No word yet on the plan for Chemo other than it's coming. They still haven't been able to determine with certainty from the pathology report of the liver biopsy whether this is breast or lung cancer. The thought all along has been breast given Mom's past. I guess to some degree the origin of the cancer could impact the choices when it comes to chemo but the MO also told us that they have enough info to use treatment algorithms to come up with a plan without knowing if it's breast or lung. We see the MO again on Monday. I think the chemo has also been delayed due to waiting on Mom to recover from the hip surgery.
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have a queestion hoping someone can help me with,
i have extensive bone mets and in my hips and spine and just recently have had alot of pain in my right lower back and it feels like it radiates to my pelvis area has any one experienced this? this is the first i have experienced pain since dx.i just had bone and ct scan yesterday but cant find anything out til my dr returns on the 19th ,,and its really scaring me ..thank god for xanax ....thank you and hope to hear some feedback hugs chris
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