Bone Mets Thread
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I got my first xgeva shot yesterday and I was up all nite with severe bloating, cramping and everything else that comes with that. Typically, I get this sort of reaction after exposure to sorbitol, which I'm highly sensitive to. So, since I couldn't sleep anyway, I researched the ingredients in xgeva and lo and behold, sorbitol! Why are they putting sweeteners into shots? That stuff is in almost everything now! That or aspartame. I could not attribute my symptoms to anything else. Good grief.
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that is so bizarre! I wonder if there is another way for you to get it? God forbid anything should be easy...
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Skylotus - That is disturbing. Don't know what else to say.
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Vadre, I do think my pain is a side effect of Kadzyla. Musculoskeletal pain is listed as a common side effect. The problem is that it keeps me from being able to walk very long, such as shopping for groceries.
I did contact my PCP about the prescription Naproxen. He suggested Cataflam (Diclofenac), which I know he prescribes often. He would have given me either, but I asked him to choose, so I got Cataflam.
Anyway, I went shopping for a little while today, and my back was much better. I didn't get the terrible pain that makes me need to sit down. Maybe this is going to be the answer. It's a drug for osteoarthritis, among other things.
Many thanks food all of the suggestions. I wish all the best to you.
Hugs, Trish
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I've had joint pain and sore feet for the three years, a side effect from taking Arimidex. My onc said the last scan showed some arthritis in my back. It takes its toll on me when I go grocery shopping and other things, like recently we flew to Georgia and trekking through the airports was hard on my body (I made myself power through it, tho.) My problem is that I am allergic to Asprin and Ibuprofen and Naproxen, and looking up the Cataflam, it says not to use if allergic to the others I just mentioned. I can take Tylenol, but it's not that effective plus it's not good to take too much of that stuff.
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Since we're comparing pain meds, I was on 600 mg of Ibuprofen when I was first dx'd, but never had 100% or even 80% relief from pain, which also came back after about 3 hrs., but I stuck with it b'cuz I hated the narco stuff (Percocet) we tried. When I was in the hospital for my hip episode, they switched me to acetamenophen w/codeine #3, and I am so much happier. In fact, many days, if I don't have to be too especially active early in the a.m., I can take one late a.m. and it will last me the whole day. And I don't need the Lidocaine pain patches, and I'm not too spaced out to drive, as I had felt with the Percocet. Just thought I'd share this, as I didn't see anyone else mention this particular med.
And I have a question... I saw my UCLA onc yesterday for the results of the MRIs I finally had done last week. (I had to wait 6 weeks after the hip replacement.) Impressions for both thoracic and lumbar areas read .. "Diffuse T1 hypointensity is seen throughout the lumbar vertebral bodies and posterior elements with patchy areas of enhancement. While there is no dominant focal lesion, findings suggest diffuse osseous metastatic disease..." So my question is... is having diffuse bone mets a worse scenario than having specific lesions??? My onc was very upbeat and positive, but after I left, I started wondering if the diffuse situation means I'm actually in worse shape or have a worse prognosis than I realize! Deanna
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Deanna, my understanding of you report is that your mets are finer and spread out rather than concentrated in one place. This does not mean that you are in a worse position prognostically.......... deep breath and don't panic.
Love n hugs. Chrissy
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Well ladies I got the confirmation today that they know I have bone mets and have not been tested any further (did CT scan with contrast and bone scan). I have an appointment with my oncologist on Tuesday. He had just released me from his care 4 months prior as I had completed all treatment. So my question would be what would you have liked to have know at the start of this journey? Are there questions I should be asking? From what I can understand I have a fracture (i think the SI joint but I could be wrong) but other than telling me that didn't really tell me what that actually means. He did give me stronger pain meds but I really don't like how they make me feel and get some relief from ice and hot baths with epsom salt. I really appreciate any wisdom that can be passed on.
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hi roberta
Sorry to hear about the bone mets. When I was first dx back in dec I was given OxyContin. I've never taken a narcotic before I was acting weird, couldn't sleep, couldn't sit still. My mother said I was being strange. Come to find out I was pretty much high from the meds. I did not like that feeling. It took about a month to get my meds right. I also had radiation to my spine and hip for pain. 2 weeks ago I had hip surgery for a fracture. Other than the pain from the surgery the bone mets have been under control. I'm sure u and your Onco will put together the perfect plan for you. I also get monthly xgeva shot for my bones
Margie
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Roberta-
Sorry for your diagnosis, it's a major bummer. Don't give up on the meds. I personally was able to handle the Oxys but I've read of so many ladies who cannot. They have all seemed to find a med or combo of meds that help. So don't give up! Just keep trying things. It can be very painful so don't be afraid to speak up. It's a long road with BM but it's doable. That's what I've been told. I'm new to it too and the boards have helped me a lot.
Big hugs to you!
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Roberta, I'm so sorry about your mets dx. I see that you and I were both originally dx'd in February 2008, and I also found out this year that I have bone mets.
If I can pass on anything I've learned, it's to insist on a thorough workup to determine the exact extent of your mets. Like you, I was in a lot of back and rib pain initially, and I was also having mobility issues (hobbling around on a cane) due to severe pain in my right leg, which led me to feel like I was going downhill very fast and might never regain my mobility, which was very scary and depressing. But when it was discovered that I had a fractured femur and pelvis and they were both fixed, I began to regain some sense of normalcy and a much happier outlook -- even though I still have mets. So I guess what I'm trying to say is, don't accept severe pain as an inevitable part of your dx. Get any painful area checked out (I didn't and ended up in the ER, which is where my fractures were discovered), and also try as many pain meds as necessary to figure out one that works for you, because we're all different. (((Hugs))), and while I'm so sorry you have reason to be here, I can tell you you won't find a more caring and supportive group than the women on this thread. Deanna
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Roberta - sorry to hear of your bone mets. I think what I would have wanted to know when I was first diagnosed is that there are lots of us who have lived full, successful, happy lives despite this crap disease. The best thing I got when I was diagnosed was hope.
I'd ask about that fracture. And about what treatments/therapies they can give you to help with the pain.
Macyhen - I think it was me. Naproxin has given me a new lease on life away from the couch! I will also look up Cataflam - may be the next step for me if the Naproxin stops working as well. My GP believes in taking a step-wise approach to pain management, so we'll go through the antiinflammatories first, then "step sideways" to a true arthritis med.
Hugs to all,
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Roberta so sorry to have to welcome you to this thread but welcome you I do. As the others have said, don't allow the pain to rule you so work with your doc to find what is going to keep you as comfortable as possible.
Beginning this journey can be pretty scary as you face a whole heap of unknowns but I have found over the years that taking one day at a time is the best at getting you through. Don't try to project possibilities just deal with what's happening now. When you see your doc do as Deanna suggested and insist on a full work up to discover exactly where and how many bone mets you have.....that in itself will allow you to deal and know what is causing your pain.....mets or something else. Other than that ask about possible treatments for you break and push to get things sorted for you.
Rads are always a good start to controlling pain and they can also kill off the active cancer in that particular spot so they are well worth a conversation with your doc.
Hoping you can get to feel comfortable with better pain control. Oh, by the by, I'm five years out with bone mets and have only been on AI's so far but they are keeping me stable........just though I's add that to give you some hope that it is possible.
Love n hugs. Chrissy
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Roberta.
I agree about looking into pain and not accepting it. My MO told me at the beginning when I was hobbling around but didn't want radiation yet because it was just something to try (they didn't sctually see something specific to irradiate) that I have the right to be ambulatory. I decided to go with physical therapy and in my case the combo of that, and I guess just healing from treating the cancer with the AI relieved the pain. Well actually also it turned out that a lot of my problem came from a break in my pubic bone and once that healed (it did take awhile) I have returned to being able to walk miles. So hang in there and the fractures you mention could be contributing a lot....and as Chrissy says, the AIs are pretty strong medication and many stay on them a long time. I had some progression and got moved to Faslodex but it is still a hormonal and pretty easy to tolerate.
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Thank you all for the warm welcome and sharing with me your experience and advise. I think I'll get a better idea on Tuesday when I talk to the oncologist. I've been having problems since late December and it was hard to figure out what was going on as I have scoliosis and 16 pins and screws already in my back. I must say I wasn't expecting this to be the outcome. I normally walk every Saturday with a bunch of survivors but have not been able to do that because of swelling in my left ankle/foot/knee. Right now I hobble around and use crutches when it gets bad. The swelling has now started in my right ankle/foot. The first x-rays and CT scan didn't reveal any fracture. I really don't think it is something I have just done as the pain and the difficulty walking has been there since late December. I had surgery to take some fat from my stomach and put it up where my reconstructed breast is - this was to soften up the tightness from the radiation. When I woke up from that surgery the only pain I had was my back and it was bad. They are pretty aggresive when they take the fat out and I'm wondering if that was enough to cause an injury? I've also lost about 22 pounds since going off hormone therapy in October and my appetite has certainly changed.I had gained a bunch of weight on the hormone therapy so I wasn't concerned. It wasn't coming off all of a sudden but now I'm wondering how much the mets played a role in that.
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crissy, you mentioned rads above, and I know others here have had them. Am I correct in understanding that they are mostly pallative and used primarily to alleviate pain? And is it true that you can only do them once to a specific area, so it probably would not be wise to use them if you aren't having pain? I'm asking b'cuz when I yesterday cancelled a future appt with my rad onc after getting the MRI results that noted no specific lesions but rather hypointensity throughout the thoracic and lumbar areas -- and not having any leg or hip pain now that my femur and hip were fixed -- I got a somewhat shocking response from her about rads being the standard of care, and suggesting that my UCLA onc (who happens to be head of breast oncology @ UCLA and advised rads are not necessary or appropriate for me right now) was somehow messing up my tx. Deanna
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Roberta, I was curious about the therapy you went off of in October. Was it hormonal or anti-hormonal. Why did you stop, if you don't mind my asking.
I want to also encourage you, like the other ladies have, to keep looking for pain meds. I do agree with you about soaking in Epsom salts. Sometimes a soak in the tub does wonders for my aches.
Caryn, it was a few pages back, but I wanted to thank you for pointing out that Zometa/Xgeva aren't cancer treatments. I often see posts from women who get the shots or infusions, and don't seem to have any idea what these meds do, or ask how long until the drugs "start working."
Wishing pain free days to everyone.
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Deanna,
I hope you don't mind my answering for Chrissy. Although rads can and often are given to alleviate pain, it can also be used to render bone mets necrotic. I had no pain from my bone met, but had rads x15 and the met has been necrotic ever since.
Tarheelmichelle,
Yes, that is a common misconception about bone strengtheners.At one point, it was thought that these drugs created an inhospitable environment for cancer growth, but this has not proven to be the case as far as I know.
Caryn
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Deanna when I was dx stage IV with bone mets, my left arm was at the point of shattering so I had a pin inserted and rads were given both as part of the treatment to kill the cancer as well as give quick and long lasting pain relief.
It is true, so I've been told, that once and area has been irradiated it cannot be done again so it is definitely a once only treatment per area and because of that should be used when both the patient and the doc agree that it will be beneficial at that time.
Perhaps your onc was feeling that your pain in the hip and femur was bad enough right now to warrant radiation and doesn't realize that the major pain has been alleviated by the surgery you have recently had. I would keep the appointment if only to discuss with her both your point of view and hers as well as the opinion of the other doc at UCLA.
The bottom line in all of this is what you decide is right for you with the help of the professionals.
Love n hugs. Chrissy
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Thanks, Caryn & Chrissy. Chrissy, you're probably right. Although I tried to tell her the results of my recent MRIs, she had known about my fractured femur and pelvis, and had actually called me when I was in the hospital and quite miserable, so she is probably picturing a different scenario than what I am experiencing now. I may see her after my next TM and scan results, when we know for sure if Anastrazole is doing the job I feel like it's doing. D.
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Hi Ladies!
I have a friend with severe bone mets from stomach cancer and I know breast cancer is different with different treatment but I was wondering what you ladies were taking for pain. She's on the OxyContin and OxyCodone and it's not helping her anymore and I'd like to be able to help her.
Appreciate your input and thanks!
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Sinsin get her to ask about Fentanyl Patches or if her pain is really bad in one particular area a pain pump which delivers pain meds directly to that sight but this is used more for spinal mets. It also may be helpful for her to see a pain specialist.
Hoping she gets her pain under control soon.
Love n hugs. Chrissy
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TarheelMichelle: I stopped taking aromasin in October as I had finished the 5 year protocol. We did talk about extending it for another 5 years but my oncologist felt with the bad side effects I was getting it was not worth it. I had no problem on tamoxifen but I was only on that for 2 years and then switched to aromasin. I'm a tricky one as I have scoliosis in my back that has been operated on 3 times and then I was in a car accident in Nov. 2012 which caused damage to right neck, shoulder and upper back. My test for rheumatoid arthritis came back high which is news to me and I have quite a bit of arthritis. Not sure how they sort through all this stuff. I have not found out anything about my bone scan yet and I'm hoping that can help clear up some questions I have.
The pain on my left side is more noticible now and I find ice really helps. Ever since the doctor said there was a fracture I swear I felt it more (or maybe I was just pretending it wasn't there). I am really concerened with my liver when it comes to pain meds as I have been taking those as needed when my back would flare up for years. I also find they really make my stomach upset.
Has anyone had any insight into hot tubs? I know they can help with arthritis but what about bone mets? are there any drawbacks? I take hot baths almost everynight just to relax my muscels so a hot tub was a thought.
I'm just trying to remind myself to just breath and that today I'm here and okay. It's hard though as I choke up when I think of my kids and the heartache this will cause them.
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I spoke with the specialty pharmacist today and he said there is 78mg of sorbitol in each shot. Due to my high sensitivity to sorbitol, he advised I not take it anymore. I called my onc and I will go back to Zometa on a super slow drip.
I know Zometa and xgeva are intended to be bone strengtheners, and are not chemo, and do not prevent the spread of bone mets. I'm just frustrated that the bone mets keep spreading.
I don't really take anything for pain because most pain meds are bad on the liver, which already suffers from the pharmaceuticals. But...if my pain was severe enough, and that was the only thing that would bring relief, I'd probably be all over it. Or medical Mary Jane.
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Trish, I'm glad I could offer a little help. This page is a wonderful find to find help of many kinds... The key is that we have to be brave enough to ask! Not always an easy thing to do.
SinSin, I, too, am on the Oxys. A couple of times I've thought that they were no longer working. My MO has simply changed dosages and that has worked. Pain management is a very individual thing with dozens and dozens of possible treatments. I suggest that your friend continue to talk with her doctor or, possibly, ask for a referral to a Pain Doctor.
I'd like to make one comment about re-radiating lesions and some other treatment guidelines. I was diagnosed over three years ago. At the time if you used hormonals and had to use radiation you couldn't go back to hormonals. And if you switched from one AI to another the first AI was no longer affective for you. I have had new activity and have been talking with my MO about our next step. In the conversation she told me that both of those guidelines are no longer protocol. My point is that researchers are making new discoveries every day. Don't spend a lot of time planning in your mind based on information that is a little bit old (even three years)! I am glad to say I have more tools in my tool box than I realized, and probably so do you!!
Virginia
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Thanks so much ladies for the advice! Hope you're all doing well as can be and are having a side effect free week!
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Tumor marker question - I know people ask questions like these all the time, but I know you ladies understand the anxiety. I recently had tumor markers drawn about 4 weeks ago, and my CA 15-3 (normal range <32) went from 10 a couple months ago to 13 4 weeks ago. The other marker (I'm blanking at the moment) is identical. Previously it had always been in the 12-15 range other than when I had my femur met and it shot up to 60. I also just had a stable PET scan yesterday (only one metastatic node now and an unremarkable brain MRI). I am concerned about the slight increase in the tumor marker, though my MO has said this is considered "stable" and that readings can vary day-to-day. Has anyone experienced something like this or heard the same thing from their doctors? I know that this has been a pattern where I'm left with anxiety after scans even though I know I "should" feel grateful. I just can shake the feeling of waiting for the rug to be pulled out from under me when I feel like I'm finally getting my bearings.
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CJRT, a small rise like that in you CA 15-3 is absolutely no problem at all. These markers can be affected by any inflammation in your body as well as any infection even if it's low grade and you are unaware of it. If you suffer from hayfever or allergies of any kind this can also create inflammation in your body and push those markers up.
Small fluctuations are perfectly normal so breathe easy.
Love n hugs. Chrissy
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Thanks so much, Crissy! I might've inverted the names of the two markers in my anxiety-fueled posting.
I do have allergies and actually had just gotten over a cold, as well as had a massage the night before the draw. Thank you for your quick response. 
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CJRT, Try not to be too hard on yourself for anxiety. I consider it a SE of Stage IV. I think you will find that it calms down a bit with time. For me it has never completely gone away though. I tease myself about thinking that every little ache or pain is new cancer activity. I was diagnosed over three years ago and still had to restrain myself from calling my MO because of a style on my eyelid last week! You did the right thing in asking your MO's opinion and then looking for a little "experienced" support. This place is full of the most amazing people willing to use their experience to help others out.
Glad you feel less anxious!
Virginia
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