Bone Mets Thread
Comments
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Kiss, that your doctor does not want to change the chemo drug too soon might well be out of the concern with a longer run for the entire course of total survival time. Each drug will work for a certain time and then will stop working due to the cancer cell mutation. The total number of the drugs available has its limits, although new drugs are keeping popping up, but still. The doctors do not want to exhaust the drugs too quickly. So there is a balance the doctors keep. Be patient for now but discuss it with your doctor by all means.
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Thank you.
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Thanks for that Xavo. I did not know that, but I guess it makes sense. It's just that I want immediate action when there is anything that might indicate something wrong. Now now now. In fact, yesterday. LOL. This whole thing can be pretty terrifying at times. Not all the time. There is reason to hope.
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hi all
This is my second try at posting. I think it is natural that this group has some ups and downs just like individually we have ups and downs. I will do my best to make room for the good the bad and the ugly.
I wish I could reply to everyone individually but dont seem to have the energy today. I am thinking of all of you,and read through last 3 pages 3 times in an attempt to absorb it all.
Here are some remarks and sorry for those I have left out.
Patty, I continue to try to post pictures but I keep getting a message that I dont have enough memory. I will try from my sons computer soon
Dune and Star you are in my thoughts as you travel through cancer land.
Suesm I am unsure if I have your name correct but if I look it up I will loose my post. I just wanted you to know I had a horrible depression when on tomox. I used anti depressants and it helped but depression did not resolve until I switched to an AI.
So my good news pet scan showed extemestane still working less active cancer than in april. BIG YAY.
So now I just need to figure out hip and shoulder pain. But pain with out worry way nicer.
too everyone wishing you peace.
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Dune, was just about to ask, it's Thursday, how are you doing? Hang in. Wait to see if this one is working.
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Good Morning,
I have had Zometa a number of times but have experienced severe hip pain and so my onc decided to try Xgeva. I had that yesterday and the hip pain is intense again, so same effect. Any one else experience that kind of pain? Oxy isn't doing much. I have scans coming up first week in August. Right now I have mets in spine, lumbar, and upper ribs. Hoping mets aren't in my hip as well but I also have hip joint degeneration, so maybe a flare?
Linda
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Linda, I am also on Xgeva but have not had any pain or really any side effects from it. As far as the pain, my onc told me that as your bones are trying to repair themselves, you will get a flare of pain. She compared it to a child getting growing pains as they grow. I also have extensive bone mets but my pain is limited to my left arm and right ribs and very controllable at this time. Bone pain is also a side effects of Xgeva. Hope you get some pain relief soon
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Deb-I take ibuprofen and diludad, I find that when I am in pain it is much better to keep up with the pain meds, if I take them only when I am in pain it is much harder to get it back under control. And also when you get used to them (diludad) you don't feel the tiredness or whatever side effects as much. I know at first I felt kind of a stigma attached to the pain meds and I almost felt guilty about getting them refilled. Now 3 years later I don't feel like that. I haven't needed to increase my dose and I have even stopped them for periods of time. I have a lesion on my spine that has flared up so I am back to taking them. And I also switched treatment from Femara to Aromisin/Afinitor so I am having all over aches again. It is such an emotional rollercoaster. Focus on the decrease in your tumor markers! That is awesome! I always remind myself to celebrate each little victory over cancer
Dune and Kate- I agree about the Xanax! Ativan works in a much more subtle way. Sometimes I wonder if it works at all but I am sure it does, I just don't notice it. Xanax kicks in quickly and that is why it is great for sleep. I used it for many years just to combat anxiety and panic attacks. After I was diagnosed my Dr gave me the Ativan and said it worked longer and better for anxiety. I have to explain at every refill that I use it for sleeping and I can only get 30 pills at once with no refills. I just called in a refill today so it will be interesting to see if I get a call saying it was denied and I will have to talk to the nurse and explain all over again....and then she usually will say "oh, I remember now you saying that you only use it for sleep". You would think they could note that on my chart or something!
I am going in next week for radiation for a lesion on my spine. I have a couple of vacations scheduled for the next few weeks, and we are talking my daughter to college. So finding two weeks in a row was difficult. So the RO said the could "tweak" my plan so he will do more radiation in 5 sessions instead of the usual 10. Has anyone heard of this? I don't know why but it makes me nervous. But I just switched to Aromasin/Afinitor last week so I am kind of an anxious mess anyway. We tried to get insurance approval to do SRT or whatever that is called. It is a one time high dose treatment. I think people have reffered to is as Vero or linear accelerator treatment. Well my insurance denied it and my 2nd opinion just echoed that it hasn't been "proven" to be a long term treatment for MBC yet, there are still trial that have not been published. My RO had first decided to do it, but insurance said no. So now that the oriniginal RO is saying lets do it in 5 treatments instead of the normal 10 (just more radiation with each session) I am kind of doubting him. But meanwhile this lesion is getting larger and I am in more pain so I need to so something! Once again, I am just trusting in my paid professional's opinion and I don't like doing that.
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I spoke with my onc by phone. She wants me to change Navelbin with something else. Tomorrow will know more. I hate all this - I have no break!
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starbrightl - my daughter had SRT it's good stuff, very precise, and they also worked out a certain protocol, she also went away for a few days, so they worked it out that she had it finished just in time for travel. They call in a specialist, plus the RO, it's complicated and they have a way to figure out the exact dosage every time. And being that it's so precise, maybe what Onc meant is that it does not eradicate everything but particularly the trouble ones. Good luck.
kiss77 sorry you are having a rough deal. feel better.
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starbright....I've had SBRT (Stereotactic Body Radiation Therapy) and another type of radiation called IMRT to my spine and ribs . It is a very specific, very precise therapy in which high doses of radiation are delivered to the tumor with as little damage to the surrounding tissue as possible. I only had 5 sessions as well but it required a very precise "mapping" by the RO and team. I did get fatigued but my skin held up pretty well. It got a little red and a few blisters which were manageable. I started to feel relief from the pain after about 2-3 weeks. Use Aqua Phor on your skin daily during treatments. Hope this helps.
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good afternoon ladies. Last night I started feeling horrible. And still sm . so no personal comments. I ave caught up on all and wishing everyone a good day
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Hi, hope everyone is having a decent day. I'm teaching this summer, so I haven't had a chance to catch up on this thread until today. I was very disturbed at the conflict between Caryn and Rose. When I first joined this thread in January, Caryn was one of the first to welcome me and offer reassurance that I might still have a good life ahead of me, even with cancer. I, too, have no pain, no problematic SE's, and I haven't suffered the way many here have and continue to. So I don't have answers to people's questions about certain treatments, etc., and I do often feel that I don't belong here because I can't give as much as I take, though no one has ever commented on it. I have received so much support with the psychological side of having this disease, and it has made a real difference in my life. A couple of months ago I started to suffer from serious insomnia, and my MO finally diagnosed mild depression, started me on a low dose antidepressant, and my life is finally back to some sort of normal. During that time I couldn't come here as much because it was hard to read what suffering others were going through. It made me wonder how much of that I was going to have to face. Posts from people like Caryn are very important and valuable because we need to know that this disease is experienced differently by every individual, and that there is hope of leading a good life for extended periods of time. It's not a contest to see who has suffered the most physically. The psychological challenges can be great, too. And being able to be honest about our feelings without being judged is what makes this thread so special. No one knows how we feel as much as the women here, and it is important that we acknowledge the pain, but also celebrate the victories. Being NED does not mean being without pain and fear and all those emotions that come with Stage IV. We need to love each other, honor our collective and individual paths, and be kind and compassionate always. I hope those of you who say you're leaving will reconsider. I don't want to lose anyone here ; I'm selfish that way.
Sharon
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3-16-2011 - BIG YAY indeed. Very happy to read this.
Kiss - Sorry for change in tx.
Patty - hope you feel better soon. Take care.
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3-16 pet scan congratulations on your totally awesome PET scan. Yay for sure.
Xavo, I am doing much better this week than last week. Mostly it is just some queasiness. Of course, I can't get the bowel stuff to act right; but since I am going for a walk with a friend in the morning, I will leave the laxative alone and opt for constipation. What a bite in the butt that whole thing is.
LindaLou, I've had amazing success with treating certain pain, pain that has an inflammation feel, with ibuprofen. For that type of pain, the oxycontin and oxycodone did diddly squat.
Starbrightlyshines, I have the same problem with trusting the "experts." However, the radiation I had was a game changer for me. I could barely walk, even with a cane. Now, no cane. No problem walking. Good luck with the xanax. I get to pick mine up tomorrow after my walk and lunch with friends. The ativan was no friend to me. It made me all jittery and sick-feeling. I'll pass on those. I'm using the 3-day anti-nausea patch, and it works pretty well. I may have to keep taking the zofran with it, but we'll see.
I'm sorry your are feeling so frustrated Kiss77. It is part of the process, and most of us have gone through medication changes because of side-effects or treatment not working. Hang in there. They will find what is right for you.
OK Patty. Take good care of yourself. Rest, and feel better soon.0 -
Guys so much going on here.
Update- Spoke to Onco, she decided that being that the Brain MRI showed some increase in lesion sizes and encroachment into soft tissues and it's close to Dura, there will be change in tx. Now moving on to Kadcyla.
What's the experience with this? From what I heard it suppose to be an ok tx.
Disappointed with that and sad, being that she is not considered stable any longer.
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Dune, very glad to know that you are continuing doing better. Hoping good results!
Kiss, let us know your new treatment.
Moma, it's your daughter, right? Very sorry that she is not considered stable for now. Hopefully the new treatment will help her to achieve stability again.
All, have a nice day!
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Hi all.
New treatment is Xeloda. Tomorrow will be the first day. Wish me luck.
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Xavo - thx for ur good wishes, yep it's my daughter all of 31,and she's been dealg w mets for bt 4 yrs- NO NED!!! just changing tx all the time, insane!! no fam hx, no BRCA, just insanity.
In this case also, Onco was so reluctant to change tx, bcs there is pretty much not much left at all, so even though PET CT was not gr8 the last time, she was hoping....but w these changes now in the Brain MRI she is concerned, and gotta do what you gotta do.
She's gr8, never complains,but it's a big burden. She lives for her little girls. And everyone pls remember gyno did not wanna send her for mamo etc...at 25 when lump was obvious, BECAUSE he said she was too young for something to be wrong, so HE wanted to wait and see. Ignorance. Of course, we did what we had to do, and thank the Lord, started the whole process right away.
Onco and I decided to wait till after weekend, so not to ruin if for her. I deal w the clinical part, so she doesn't have to deal w this stuff all the time, so I spoke to RO and Onco today again, and will tell her dear hubby also after the weekend. And so it goes, agh!!
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... Hi, I wanted to look at the PDF but when I tried to open it, it was "forbidden"... Is this pdf available to everyone?
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Good luck, Kiss!
Jazzi, sorry I am not sure what the problem is. Hopefuly someone who knoes it would check in shortly later.
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Good morning everyone. Wow, I can't believe how fast this thread has moved along in the past day or two!
First, welcome to the new posters, as well as those we haven't seen in awhile. Kiss, sorry to hear about the change of meds without a break, but hopefully you'll see significant improvement quickly with Xeloda.
Sharon, good to know you're busy this summer and doing well. And I agree with your thoughts about needing to read positive stories, even if they're not exactly like our situations. I would hope we can all share each others triumphs, as well as the pain, as long as our posts are cognizant of what others might be going through. In fact, for anyone who may not have seen it, there's an entire thread here dedicated to exceptional responders and outliers. Caryn is not the only one. https://community.breastcancer.org/forum/8/topic/8...
Deb, I'm so sorry about your cancer buddy. I know in our situation it's especially hard to deal with these losses. Big hugs to you, and do feel free to tell us anything more you'd like to about your friend.
Patty, I'm concerned about you -- don't like reading that you started feeling horrible yesterday, and will be looking for an update from you! By the way, I have been dealing with a killer sore throat for two days now that I literally felt come on as I was just sitting here. I doubt very much if it has anything to do with bc, but it's scary when I remember how truly deathly sick I was in December of 2014, I assume b'cuz my body couldn't fight my then-undx'd mbc and whatever bad bug or bugs I also had at the time. So I've been downing Emergen-C and had some temporary relief when I finally popped a pain med last night b'cuz we had dinner plans I didn't want to miss. That was also a bit of an eye opener for me -- realizing what it feels to be pain free, which I guess I haven't really been (in denial) in recent weeks.
Annie, praying that your family crisis is improving. Please let us know. I'm concerned and lifting you up in prayer even more than I normally do all of us here. Deanna
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Deanna, thanks for the info on the other thread. I don't qualify at this point, but I'm glad it's there, and I plan to read it regularly.
I hope everyone has a great weekend of feeling good and having some fun.
Sharon
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ok... thanks!
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Hi all, I am not new to this website, but I am to this thread.
I have been having discomfort in my lower back and hips. It is not constant. Has been off and on since maybe February, more off than on... I have gained over 17lbs since
Dec. 2014, because my dog of 15 years died but I don't know if the weight gain has something to do with the discomfort. I can feel the soreness in my back when I lean backwards at the waist... yesterday it didn't bother me at all... I walk home from work everyday for about 45 minutes. Today I am at home and not walking and I have felt the discomfort while I was standing in the kitchen preparing lunch. It is not an excruciating pain... I know everyone is different but would some of you describe your symptoms and how you found out you had bone mets? I will appreciate any information you can give me. Thanks...0 -
Hi, Jazzi ~ Sorry you're concerned about discomfort in your lower back and hips. Your question made me think of another thread here that I'm going to give you a link to. I answered this question at length there, as did two or three others from this thread. https://community.breastcancer.org/forum/8/topic/8...
In general, the rule of thumb seems to be, if you have consistent pain that doesn't improve within 3 weeks, it might be time to discuss it with your onc -- if only for the peace of mind. Some simple blood work, including a CA27-29, might help determine if some type of imaging is advisable. But there are plenty of reasons for backaches, and certainly a weight gain of even a few pounds can be one of them, so I wouldn't worry at this point, but probably would just get it checked out, since you've had it for several months.
Good luck, and let us know what you find out. Deanna
Editing to add... if you're on an A/I or Tamox, that might be another explanation for the pain.
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Thanks Deanna. I am done with all treatments. I stopped Arimidex about 2 years ago and didn't have any problems with it. Thanks for the link, I am checking it out now. 9 years for me on Aug. 26, 2015
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hi jazzi
Sorry for your worry. My pain in my rib seemed to come on sudden and sharp. my pelvic pain was so gradual I didnt take notice until it impaired my walking. I think if you are worried talking to your primary care doctor or reaching out to your old oncologist would be a step to piece of mind. Good luck to you.
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Thanks. I am fortunate to have a primary care physician who also specializes in breast cancer and work closely with my previous oncologist. I actually have to get a CT scan next Friday because last Wednesday, at work, there was blood in my urine... every time I would have to urinate it felt like pressure on my abdomen, like something was trying to come out but couldn't... a feeling of urgency like when you have to really go and can't. Anyway, when I got home all the symptoms and blood in my urine had disappeared. I saw my doctor that Friday and she thought it might be a UTI but the urinalysis indicated that my rbc and wbc are between 5 - 10 and should be less than 3, so she wanted to check my kidneys for possible stones. I hope that's the case. I am trying not to worry and now with my hips/back hurting off and on it is scary.
... anyway thank you for the information.
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Good luck Kiss. I hope the xeloda is a good drug for you.
Deb, I too am so sorry about your cancer buddy. I hope you will allow us to support you through this really hard time.
Patty, please check in to let us know how you are doing. You know my prayers are with you.
Deanna, I just caught my first cold since starting chemo. What is the best thing I can do to ensure I can continue treatment. Fortunately, this is my week off; so it buys me another week to be well enough for treatment. I'm taking lots of vitamin C in various forms. I don't know what else to do. With all the meds I am on, I even worry about taking any cold meds. I never like getting a cold. It hangs on too long and often turns into bronchitis, which I think would be uncool for my lung mets. So, I am particularly unhappy about getting this now. Mine, too, came on suddenly. I had a suspicion when I got a slight chill sitting out in the dampness chatting with friends earlier. And tonight I'm having trouble swallowing. Oh goody goody goody.
Otherwise, it was a good day. I went for a walk in a wooded area with one friend. Then we went to another friend's house for lunch. I hadn't had egg salad in ages and ages, and Mary Lou fed me 2 (TWO) sandwiches. I ate them. I took brownies and Ruth took cantaloupe. It was a very nice day, but by 3 I start going downhill pretty fast. Since mom and I are taking Giada to the National Aquarium in Baltimore on Tuesday, I need to be prepared for all the ways I start to feel bad. I don't know if we will be out of there by then. I'll need supplies for pain, supplies for upset stomach, and supplies for the cold and possibly blisters starting in my mouth from the chemo.
Good luck Jazzi. It's a heck of a thing when you hope for kidney stones, but I totally understand. I think the pain associated with bone mets varies so much. My first met pain was my left scapula. It wasn't debilitating, kinda felt like I slept on it wrong, but it stuck around long enough to get on my nerves. Xray showed nothing, so I ignored it. It did hurt less with time. However, one day I was just standing, sort of twisting back and forth a little, when a pain that knocked me to the ground (fortunately my bed was right there) hit me in approximately my left sacro-iliac joint. I couldn't walk. Mom got a cane out for me to use and we were headed to Advanced Radiology for a CT of my brain so I called the onc and they xrayed my pelvis. There was a met or mets there, and they had just flared, hit some nerve and knocked me down. No fracture. So, really, it can run the gamut. All you can do is be your best advocate and ask for the tests you think you need. Apparently, an x-ray cannot reliably find a met; so you have to get to a doctor who will order a PET or MRI or CT. Again, good luck.
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