Bone Mets Thread
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Tennille taxol shrunk the tumor enough to give back use of my arm. I had an amazing response that shocked everyone. My MO also had me apply heat in that area as often as I could (it also helped relieve the pain). Once my arm stopped swelling and mobility started returning, he had me start doing stretching exercises with light weight until I regained full mobility. I have about 98% mobility back now, with only slight pain when I lift my arm directly overhead.
I'm really sorry to hear that you are going through it for the second time. Losing use of an arm is very discouraging, especially when it's your primary arm/hand like mine was. I couldn't even hang out online because I couldn't type. I'm not really sure what we would do if/when it happens again. Chemo isn't exactly the greatest option, but I haven't had any rads yet so that might end up being my next option.
I really hope your doctor comes up with a good plan to get your arm moving again that doesn't involve nerve damage or other horrible side effects. Let me know how it goes because I have a feeling I'll be in your shoes with Round 2 sooner or later.
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Piscean, I know exactly how you feel. I most likely had "clean" mammos for a few years, and really, an MRI has been negative as well. So I could have gone more years if not for this growth on my thigh that I had checked out by a Dermo. Super surprised when it came back with Metastatic carcinoma which was the one area that finally pointed to breast cancer.
Yes Dr. Google had me one foot in the grave. Not from outdated material as much as from inadequate information. Covering one scenario but not the other 20. It takes a lot of input to narrow in on just what we have individually and how to go from here. It is not easy.
Dear Chef. Remember there are quite a few meds out there for the same thing-breast CA. It sounds like your ONC is taking care. I think the goal is to be on meds that work with minimal side effects. I hope you get to a tolerable place.
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thanks loriCA for the reply, it’s very odd to me and I guess my fear is that they aren’t telling me something??? But no, my radiation oncologist, infectious disease dr, and oncologist all agreed it is tumor fever. They are all at the same hospital and have been working closely on it. Hearing you guys really makes me wonder what is going on!? Btw my scans just recently were stable. Lung and liver Mets showed improvement, bone mets were just stable. Onc was very pleased until the fever thing started happening. They sent me to infectious disease to rule out any kind of disease which he says he did, they put me on 3 rounds of antibiotics and no change. So what you’re saying makes awhole lot more sense but it also sounds very simple and common and I’m wondering how 3 diff drs could all be missing such a good easy common reason for the fever? They all wanted to do another petscan which my ins denied, I have lost 35 pounds since feb. I have been very up and down throughout this treatment, sometimes having to use a walker or not being able to get out of bed and other times walking fine with no assistance. I’m just trying to think of other clues, I had a titanium rod femur hip surgery Jan this year. I don’t know? Calgon take me away! You may be too young for that one;)0
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My back pain continues to worsen. I see my onc on Tuesday, where I’ll find out the results of yesterday’s PET. In the meantime, do you think I should maybe request a muscle relaxer just to see if it helps? I’m at a loss..
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Chef,
What is the timeline for the fevers in relation to your hip surgery? Also, you note having lost 35 pounds. Was it a disinclination to eat, or gastric distress?
I get tumor flare every time I start a new chemotherapy. My TMs skyrocket, I get fevers, and very sincere bone pain. At first, it freaked me out, but now I've learned that my body just does that. By month three of treatment, it starts to settle down.
I remember the Calgon thing. I still think it after pouring a nice bath.
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SheliaMarie, a muscle relaxant might be a thing to try until you see your onc, but be careful with those things unless you've had them before and know how you react (I guess that's true of all medicine). I had a muscle issue a long, long time ago when I was young and cancer wasn't in the picture, and I remember the relentless, agonizing pain in my back that would just not go away with anything (and I even tried stupid things like vodka and painkillers). No opioids or muscle relaxants, though. After weeks and weeks of pain, one night I lay in bed and could feel the muscle just letting go. I woke up the next day free of pain and it's never come back. So, muscle pain CAN be horrific and relentless. I hope that's all it is and your scans look good. Could you get results earlier than your appointment by calling?
Chef, I wish I had an answer, but all I can say is that your doctors need to do a better job explaining their conclusions and decisions. It's possible that there's some infection or inflammation due to the surgery and chemo, or just due to the chemo. The infectious disease specialist should sit with you and explain what tests he ran that tell him that's not the case. It's also possible that it's an immune reaction or tumor flare from the new treatment - I don't know if it would last so long after stopping treatment, but the MO should be able to explain WHY he doesn't think that's the case, especially considering that the scans look good. It can also be that they are worried about a tumor developing somewhere they can't see very well by CT (the weight loss is probably something that worries them). They should also be able to articulate this to you, or better yet, to the insurance company that denied the PET. There are also other tests they could run (MRI, ultrasound, gastroscopy, colonoscopy, etc) to get a better idea what's going on. I know I would have a very difficult time pressing doctors like this for answers, and maybe you do too. Maybe it's time to bring along someone who can tactfully but firmly advocate for you. Hugs, and wishes that things get figured out soon.
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Well ladies, this disease keeps us hopping in terms of side effects and issues. Radiation to my hip and pubic bones on the right side have definitely eased the pain but... one slight issue has emerged. Hemorrhoids! Ouch!!! I am assuming this is related to the radiation given where they zapped me (I see my RO on September 6th). Years ago when I was first diagnosed I had a doozy of a case of hemorrhoids as a result of the CEF. At the time I had no idea that the chemo would also thin the walls of my colon (makes sense when you think about it) but the combo of this with the anti-nausea meds which constipated the hell out of me led to thrombosed hemorrhoids. Oh goody. I haven't had any trouble since until now which is why I think the rads are the culprit. Sure wish they would settle down!
Chef and SheilaMarie, I can't really add anything to the advice you've been given. I hope things improve for both of you soon and Chef, hope you also get the scans you need.
Pat
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For trouble in the nether regions, these things are the bomb:
https://www.amazon.com/Technology-2000-h100m-Hemor...
Especially if they are thrombosed. I have one to wash and one to use in the freezer. If you want to get super sanitary, use a condom over the device.
Well, we had to do something with all the old ones
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OMG. That's awesome. Reminds me of Lita's "shittinpants".
I have a very funny story about my GP from when I was on chemo in 2001. He originally suggested cutting them.. uh... not a good idea with no immune system...so then suggested I put water in a condom, freeze it and use that. It's amazing how big a condom will stretch...
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LOL...
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Thank you Lauren and Lovefromphili... your advice and stories are reassuring. I got my pet scan results yesterday and they were good. I only have bone mets on my t9 and t10 vertebrae. They are going to do radiation. I have an appointment on Wednesday to set up the machine. I am also going to start faslodex shot 1x a month, ibrance pill 2 weeks on one off, and then continue with zometa IV every 4 months. It's crazy that something is taking over our body, I'm not sure about anyone else, but besides my back pain I feel great. when they did the biopsy Wednesday they couldn't even get a solid piece to submit to the lab, the cancer had nearly eaten away my entire vertebrae. It was pretty much just liquid and mush. My oncologist said that the bone should still heal after radiation. If I want he will send me for bone cement. Does anyone here have experience with that? I just signed up to start school in Octobre to finish my B.A. to become a teacher, I was going to not go, but after hearing about the life that I can still have I think I'll still go. Thank you again for everything!!!!!
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Hi Ladies - I continue to read and think of each one of you every day, even if i don't post. I often don't post because I don't feel like I have anything very useful to contribute, but I want to send hugs to all, especially to all of the new ladies who have posted. Here is my update: I was not able to participate in the clinical trial because I didn't have a "measurable" tumor. I have "innumberable" bone mets (pretty much throughout my skeleton), but they are each too tiny to measure in a meaningful/accurate way. So, at the beginning of August, I started Navelbine -- two weeks on, one week off; I started my second round on this schedule this past Thursday. It is supposed to be one of the "easier" chemos, but it still hasn't been a piece of cake. Fatigue, nausea, bone pain and diarrhea have been consistent.
I know it could be a lot worse, but I have just been feeling really scared and down. All this is coming right in the midst of back to school and fall activities starting for my kids, end of the fiscal year approaching at work, and very difficult interactions with my soon to be ex husband. I hate that my kids (15, 12 and 10) are dealing with a sick mom and a broken family all at once. I just feel overwhelmed and exhausted. I wish I could force myself to be more positive but it's all just a little too much right now. I know there are people in worse situations than me, who are dealing with things better than I am, and I wish I could be more like them. A friend from a support group that I was in back in the 2011-2012 time frame (when I was going through treatment for stage III) just passed, and that really hit me. She had been stage IV for about 5 years, and she felt at peace with passing, but it's hard to believe that she is gone.
My tumor markers (which for me are reliable) had gone from 149 to 738 in the 5 weeks when I wasn't getting any treatment (while trying to figure out if I could do the trial or not), so I am hoping they will look better in the next few months. Assuming that they do, I will have another scan at the end of October/beginning of November. I am also a little concerned about how well I will tolerate the Navelbine -- my white count was just barely high enough to get it this past thursday, and that was after my week off. I am hoping that it will rebound a bit by next week.
Sorry for such a downer post, but I just needed to vent a little, so thank you for listening.
XO, Lisa
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Lisa, vent away. This is the place to do it as we all understand what you are dealing with, at least to some extent. While it may not be obvious from the posts, we all go through these periods of uncertainty, discouragement and being overwhelmed. You have a lot going on at the moment and that is certainly not helping.
I’m so sorry to hear about the loss of your friend. These things hit us especially hard. Even the losses on this board really impact me. I’m reeling from the recent loss of Claire (Lalady1).
Others may have some suggestions on the side effects from Navelbine. I wish I could help more but I haven’t been on that one...yet. Just know I am sending a big virtual hug and hoping that the chemo gets the TMs back down.
Pat.
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Hi Lisa, sorry you are going through such a difficult time. As if MBC isn't enough, losing a friend to this terrible disease and going through a divorce must be really strenuous.
I can share my experience from treatment with Navelbine; however, in Europe it is usually administered weekly as capsules, which I am currently taking. But from what I have read the SE profiles are similar, the GI SEs may be worse with the capsules...according to MO. I too have had a lot of nausea and developed neutropenia; the neutropenia resulted in having to skip two doses. My white blood count then went back to normal and MO started me up again on 60 % of the previous dose. The nausea is gone, which is a relief - so important for my QoL. On Tuesday, I will get results from scans and blood work, so crossing fingers....Maybe a dose reduction could be helpful in your situation (?). I hope this chemo works for you and that the SEs get to be more tolerable.
Meja0 -
It's good to see some familiar faces from the past!
Lemondrop, I want to fly on over to give you a hug and a casserole. What a box of rocks you've been given lately. Time to call in the cavalry. Can you reach out to other school moms to get rides for the kids? Friends, family, church members to give a hand with meals, errands, cleaning? Just to give you a breather from the drumbeat of chores that come with a busy family. Work with your MO to ease the SE's. And be very, very kind to yourself. Sending you waves of strength as your body adjusts to this treatment.
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ladies! Thank you so much for the replies and help! For all of you that are hurting or having other various problems, I am so sorry! I wish I could help! I long for the day that I can contribute wisdom and encouragement! But here I am again, spilling out more problems. So what is it about nights and weekends? Do y’all ever get close to death it seems but by the time you are within drs hours your just not as bad?? Anyway over the weekend fever spiked back up starting in the morning, couldn’t get out of bed all weekend due to pain, fever, weakness, stiffness:/ this morning(Sunday) I woke up with a swollen eye? Not crusty or anything just almost shut, I can open but it takes great effort, site affected also, and pain looking to the side. Well I read some horrible horrible stuff on google about tumor fever and eventual organ shutdown and about got my daughter up for a hospital trip, but as we were talking and I basically dumped this big pile of crap on her, I started to feel better, started sweating like a pig, so my fever broke annnnddd my eye swelling is even better. Imagine I would have gotten to the hospital and they would have thought I was looney. But if anything google says about tumor fever is true then it seems to me that I should stop radiation and get back on chemo ASAP! I do fear getting chemo while I’m so sick (mainly at night and on weekends) but should we stop radiation midtreatment ? Why wouldn’t the drs have thought by now maybe we should get this girl back on treatment because it seems like things are getting out of control( it’s been maybe 10or11 weeks now with no chemo). They do seem to talk about me a lot. They’re all in the same space. I’m so tired of being sick! I’m so tired of my poor family seeing me so sick! We’ve barely gotten started!! This is a really rough beginning. Have any of you felt like this, just so sick for weeks and thought maybe you wouldn’t be able to come out of it and then poof you’re back in the race!!!??? I am sooo grateful for each and everyone of you that take the time to read and respond. This really is a loving community!0
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Hi everyone, I had good news after the bone scan I had last week. It was reported as stable, which was a surprise as my blood test the previous month showed my TM had jumped from 600 to710 but then, surprisingly, last week my monthly TM had dropped back to 500, the lowest it's been in about a year during which it's been steadily increasing. Thanks Wallaby for your input about that.
I should be jumping up and down for joy but my marriage continues to founder, with my husband unable to understand I can't do what I used to do and that I'm so fatigued and flattened by the Ibrance during the last week of the cycle that I'm not as much fun as I was. I'm beginning to think I might have depression yet I've always been an optimist and have been able to find happiness everywhere, no matter what.
I feel really bad coming online complaining when so many of you are worse off but I just needed people who are understanding to talk to about it.
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Leapfrog - Yayy always encouraging to read good news! I too am an optimist, yet I finally succumbed and now take a very mild anti anxiety (I think, or anti depression) pill and added Reishi mushroom supplement and greens to my daily routine, and have been back to my other positive persona most of the time. I have a trip to Australia planned for October, which I have thought about since I was 14 (now 64), so that is a very bright spot on the horizon for sure. My son and his family live in the Brisbane area - so very exciting!!!
Wishing everyone good health and positive results from scans, tests and all that jazz! Janky
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Seems a couple of big hugs needed for Lemondrop and chef47. I sincerely wish you both better times ahead.
Leapfrog, sorry that your personal life is difficult. I think it's hard for some husbands to realise you can't be the same as before. It's taken mine a while, but it's getting better and he's much more understanding now. I can't really advise you, as I don't know the reason. Sending love x
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Hi Lynne, For the shatter pain in my spine (caused by a sneeze!), Rx. Gabapentin was my saving grace! I had to wait 4-hours later, before driving, but it calmed the nerve pain.
Just sharing, incase it helps? Gentle hugs to all of us, Diane
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Tripling the casserole recipe for Chef and Leapfrog. (I'm a Presbyterian, that's what we do...) Chef, I too have felt "this is it, I'm dying" in the middle of the night, only to wake up and feel fine. Also have had bouts of feeling punk and then pulling out, but certainly not the length of time and severity you have. Wish I had more to offer, other than talking to your medical team until you get the answers you need.
Leapfrog, you were so worried about this scan and now look - stable. Which makes me wonder what the MO was talking about who said you were failing I/F. You've been buffeted by some strong winds, time to take a moment to regroup and reassess. If I remember correctly, your cancer center has a good whole-body approach (massages, anyone?) that you should definitely avail yourself of. You've got unconditional support here, lovely.
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Hi all... I have been lurking for the last year... very bad BCO participant, but wanted to jump in to tell SHANNA M that I have had two kyphoplaty's… or cement in my vertebrae. I had 3 weeks of radiation (inpatient... my back was so bad they wouldn't let me get out of bed) and then wore a lovely back brace for 2 months...24/7. Everything "healed" except for two lower spots so I had surgery and they injected cement. It was a very easy surgery, and completely successful. That was almost six years ago... I have been NED for a long time and am completely active - run, hike, ski, etc. I highly recommend it if necessary! Thinking of you. This is a very scary time; so much uncertainty and becomes a little better after you have most of the answers.
Hugs to everyone.
Andi
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Do iron pills really help with rbc counts on chemo
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Thank you for your reply Andi! I actually had an appointment with my radiologist yesterday, and she wants to let the bone heal on its own after radiation. IDK if that's the best idea, but she seems confident that I will have success. I will be doing 5 sessions of stereotactic radiation on my t9 & t10 vertebre and then changing my hormone therepy. I hope this nips it in the butt and I can say that I've been NED as long as you! I am so hopful when I hear stories like yours.
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Leapfrog: Cancer takes a toll on us physically, emotionally and it can damage our relationships as well...I found that out the hard way. When I was diagnosed the first time, in Oct., 2006, I had just come back from 2 weeks in Europe with a man I was dating seriously (I'm divorced). We had a wonderful two weeks driving all over France, Italy, and Switzerland and when we returned, we even talked about buying property in France or Italy. Three days after we came home, I had an appointment for a mammogram. Two days later, I got a phone call from the GYN and was immediately referred to a surgeon for a biopsy. I went for the biopsy before saying anything to him because I didn't want to cause any undue alarm. When I had the results and finally broke the news, he reacted like I had the plague and was contagious! I had my mastectomy surgery scheduled for a couple weeks later, which my ex-husband and my son accompanied me to (HE was out of town on business). After that, he appeared a few times, went to a couple of chemo appointments with me and just gradually disappeared. Needless to say, I had my hands full with my own treatment and actually felt like I dodged a bullet with him! I diverted my energy from the demise of that relationship into taking care of myself. I know that sounds easy to say and more difficult to do but I had to do it for myself. I couldn't change my diagnosis and I couldn't change his attitude towards it. I hope things even out and get better for you soon. Don't lose hope!
Cindy
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ShannaM - I think that is good advice from your doctor. They actually did watch mine for several months to determine if it would heal, but it was just totally collapsed and affecting my walking, so decided the surgery would be the best route. Good luck with the radiation! I hope it nips it in the bud, too! And, I hope you are hopeful. I am reading of more and more stories on these threads of women that are NED for 5, 8, 10 years... even some that have been advised to stop treatment because they have been NED for so long! I have scans next weekend, and as always, I am totally anxious because I feel like the other shoe might drop. Ugh.
Leapfrog - congrats on the stable scans! Very happy for you. Do just continue to focus on you and take care of yourself. I hope things turn around with your husband... you definitely don't need the added stress of worrying about that.
Hope everyone is having a relaxing long weekend.
XO
Andi
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I'm having my fourth spinal cyberknife treatment. Whenever a met pops up on my spine, we zap it. I wonder how much I can do that? Seems like an easy fix for the moment. Does anyone have experience with multiple cyberknife treatments?
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The only thing I've heard is that you are not supposed to go in at EXACTLY the same angle and hit the exact same place twice as it can damage the bone. (But I think that only applies to "regular" radiation...as far as cyberknife goes, the protocol may be different.)
I've had a few treatments to my spine, and my RO says we have to "map it out carefully to avoid doing any damage in the process."
Wishing you the best, L
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thanks Lita. I have a lot of confidence in this radioncologist and his team, and they have top of the line equipment, so hopefully I'll be able to keep doing it, if need be. The one I have now is right below one we already did, so they know that have to be careful. My cancer seems to like my spine a lot. 🙄 ugh.
ABS
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Don't be surprised if you lose some height bcuz of spinal mets. I've lost almost 3 inches since 2016 dx. Boo!
L
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