Bone Mets Thread
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Hi Lauren - I will try to find the article. AMP
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Sherry...I am so very sorry you have to deal with this. The cancer demon just doesn't give up! I don't know anyone else who might be dealing with this, but hopefully someone can chime in. Hang in there.
Hope
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Just wanted to connect a bit, as I have mets to bones, and also some of the unwelcome issues others have. Sherry, I have. had stomach problems for the past year. I have lymph node mets all around the midsection. I never had problems with digestion or belly pain until this year. It does tick me off. I take a double dose of Protonix now, by rx. It feels like what ulcers must be like. I hope you get some relief soon. Food is such a big part of life's pleasures for me, when my appetite is off or my sense of taste is skewed, I get a tad despondent! Stomach irritation is just the last straw sometimes.
Best of wishes to everyone here, I will read back as much as I can so I know more about what's been discussed here. Big hugs
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Some interesting finding as far as osteoporosis meds.
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Gailmary & Miaomix
Thanks a lot for all the information.
It's been amazing to be in this group.
Sherry--Sorry to hear about your stomach mets.
We really do not know that we can find it somewhere in our bodies.
My PET scan results said it is essentially resolved but when I feel pain in my bones and head,I think the cancer is gone to my bones and to my brain,I am very scared all the time.
Janet
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Sherry35, so sorry to hear of your news. I spent months trying to diagnose my decreased ability to hold food down. After a particularly rough crash and burn, I was finally diagnosed with a bc met to my esophagus. I had a stomach tube (g-tube or peg) inserted to get nutrition and am on a short course of paclitaxel / gemzar. It's a strong chemo combo, but the hope is that it shrinks the tumor to the point where I can eat normally again. Then I'd go back on some form of oral chemo. I'm not gonna lie, the peg is a bummer, but bottom line is that it's giving my body the nutrition it needs to fight. Keep us posted and let us know how you're doing.
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Jaylea...I've been thinking about you and wondering how you were doing. So, I guess you still have the feeding tube? Hopefully, that will end before too long. You are a real trooper! I don't think I've ever hear a complaint from you during your journey. Continued thoughts and prayers heading your way!
Hope
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Thanks all, I won't have any answers until I see MO next Thursday. I don't feel bad so am hoping that's a good sign. I'm pretty sure this has been present the entire time I was sick before my mets Dx. I'm hoping present tx is working. I will do whatever it takes to continue fighting.
I wish you all peace and love on this incredibly difficult journey that we are all united on.
Sherr
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Hi everyone, I had liver Mets, but have been NEAD since May 2016 when they removed the tumor. I have lymphedema that is semi under control, but it causes a lot of problems because it goes up into my neck...
Anyway, I have a new achein my upper left arm (cancer-side) and am going to have a PET to see if I have mets there. My question is, can it cause a lot of pain? It’s almost like it got worse once I knew they needed to scan.
Sherry, I just lost one of my best friends to esophageal cancer (primary). She had so much more time than they gave her! There are so many treatments too handle side effects, please make sure you bring them up at your doctor visits. I pray you will live comfortably until they find a cure! Sleep well, everyone
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It really is such a tough rollercoaster isn´t it.....I am just at the beginning so hope I am not annoying people with my questions....
Are there any reputable articles on what effect chemo has on MBC in bones? Do we make new healthy bone? Or are we left with bones like osteoporosis.....very weak?
Is it a good sign to have more pain after chemo treatments?
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Lily...I did “the bad chemo”, radical double mastectomy, radiation, herceptin infusions for a year, tamoxifen, then was started on Arimidex. I quit Arimidex because of SE. I am osteopenic and have broken my tailbone and my right wrist four times with six surgeries because I always break it at the end of the plate and screws...always both bones. My treatment/surgeries started January 2010. My breaks started 2016. I’m not sure if this helps? Please keep in mind that everyone is different and that God is still in the healing business. Hugs!!!!
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Update on the tumor between my left inner ear and brain...the radiologist thinks it's another cancer. I went to ENT and he wants to “watch" it! Sooooo....I'm going to Duke or somewhere else! Any suggestions
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Good morning,
I want to apologize for my comment to Sherry earlier. I did not mean to hurt your feelings, I’m truly sorry
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luvmyfam, I missed what was said earlier but I want you to know that it’s so nice to see an apology. Many people can’t admit to a mistake, misunderstanding or just plain being cranky, lol. Nice to seepeople being decent humans.
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here here! I second Mae’s sentiments!!
So important to be able to acknowledge one’s role and say we are sorry.
Lots of love from Philly muaaaaa 😚
Fighting a little cold (or is it allergies?? Meh!!!) I just want it to be gone already.
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Philly,
A dr told my hubby once you can tell the difference between a cold and an allergy by the mucus. Clear its an allergy. Cloudy its a cold.
Hmmm?
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Thank you TNMTNGAL........its hard to know what is good and what isn´t.......I could not tolerate Arimidex either
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Thank you Luvmyfam. I appreciate you saying so. Onward and upward I say. Life is too short to be anything but happy
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You are welcome. I agree, onward and upward.
Philly, so sorry you have a cold. It seems mean to add insult to injury with being sick!!! I hope it goes away soon.
One of the things I hate most about BC is that nothing can just be sore or a pain, it’s all something we have to watch and wait to see if it becomes something else that we have to worry about.
I am waiting to get a PET CT because I have an ache in my left arm (cancer side). My therapist could not manipulate my arm to change the pain and it hurts at rest, not when I’m doing an activity It always seems to be something.
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thanks GailMary and LuvmyFam!
I have finally given in to it being a cold. Mucus is a lovely bright yellow, not clear. It’s really not the worst cold in the world. I just like to whine when I don’t feel well 😬
Hope everyone is enjoying this weekend! A beautiful day in Philly!
Hugs!!! 🌸🌸🌸🌸
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ichangedmyname, I am the biggest baby with a head cold ..well really a stuffy nose. I was in labor and whined more about my stuffy head than the labor pains..doesn’t matter what color It’s so annoying
I am now. Having GI symptoms that have me worried about mets to intestines. Bone pain is increasing on my left side. Suddenly it’s mid femur and mid calf. Of course I had another spill and hurt my knees so that may be it. I have to calm down. I’m going to visit my new grandson soon. Having herceptin and xgeva 2 days before. Doc offered to switch letrozole to aromasin. I’m afraid to change anything.
Suddenly I realize it’s exactly 2 years since reccurance. 24 months and I’m afraid the bottom will fall out. Ok I’m afraid . I’ve been lucky so far. Maybe it was the person from my insurance co who kept insisting on a home visit by their nurse. After declining 3 times I just flipped yesterday and said. “I have stage 4 cancer..if you can’t fix that leave me alone” That was very rude and mean to the woman on the phone just doing her job so I apologized and hung up. I really should have said it to the company president( as if they care) It hit me very hard.. I try not to say Stage 4 around anyone.
Grateful I can say here what no on wants to hear. Not so brave today. I’ve had a good life. Just so many symptoms that may be nothing.
Take care all my mets sisters.
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Maire67, I dont mean to scare you but just this morning I watched a lecture carried out by an expert in bone mets at the lbbc conference and she suggested to bring up to your doctor any pain in the areas you describe. Now it might just be a coincidence but the risk for atypical fractures is an actual (although rare) side effect of xgeva and its always better safe than sorry.
You can see it for yourself here and make an informed decision as to what to do 🙂
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Thanks a lot JoE777
have a good weekend.
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Here’s a bit of good news: the PET scan last month showed much less activity in quite a few areas of my skeleton so the treatment I’m on seems to be working! Tumor markers had been dropping steadily since December. I feel pretty good and have resumed most of my pre-metastatic schedule. We’ll be doing the trip that got postponed last fall when I was recovering from spine surgery and getting radiated.
Apparently the influenza virus is still hanging around. Be sure to wash hands, stay hydrated and get plenty of rest if it shows up at your house...
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Thank you Daniel86 that you tube video from the conference was great. I will follow up with my mo. So informative.
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Just wondering if anyone noticed a slight increase in bone pain (in my case rib) following starting treatment? Like hopefully a reaction that it's working? I started chemo/herceptin/perjeta yesterday and my rib feels worse today. WOT
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Mycells many of us had horrible bone and joint pain when first starting on Herceptin/Perjeta, although usually in the lower half of the body (hips, knees, legs). It's scary when you have extensive bone mets, but it seems to be some kind of reaction to the drug because it happens to a lot of us. Once my body adjusted to the treatment it was no longer a problem, took about 4-5 months before it eased up for me. Several women here recommend Claritan for the bone pain and it does seem to help.
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Jaylea ! I am so sorry to hear of your recent developments (the "peg") - you sound so upbeat despite it all, thank you so much for your courage ! may the new course of chemo shrink that bugger !!
I'm going back on Xgeva, since many new places lighted up on my spine in last TEP.
I must say it is a comfort to find you lovely ladies here, you are all soooooooooooooo brave. It helps to feel not alone in this journey.
Hugs to all.
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Amarantha, what a delight to hear from you. I often think of you and your DH and hope you both are doing well. Sorry to hear about the spine mets, but likewise pray the Xgeva is merciless on them and kind to you. xoxo
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Jaylea- How are you doing? I think of you often and you are in my prayers.
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