Bone Mets Thread
Comments
-
Shelia, so glad you are feeling better!!
0 -
Delvzy- I too experienced numb chin syndrome about 3 1/2 years ago. This led to my diagnosis of mets to bone. By no means is it a death sentence as there are many good treatments out there. I see an oral surgeon tomorrow for what is likely ONJ (was on Xgeva every month until this past July). Praying that it is not too bad.....
0 -
De-
I had numb chin syndrome and read the same things you did-and yes it is horrifying.The articles on line are misleading-my oncologist said if I did have it they would zap it with radiation. I had an MRI done and there was nothing. My oncologist said it was probably from chemo. It lasted about 4 months and now I just have a faint numbness-nothing like before. I know you are worried-but my guess it is chemo related. Hang in there!
Lisa
0 -
lita, have u tried fentanyl patches? I have been on them since 2013, as I am allergic to MOrphine. The patches have kept me sane. I have used the lidocaine patches also for my lower back, which helped, but the fentanyl are much smaller , easier to manage.
Delvzy—I have had numbness in various parts of my body. Usually explanations are vague, I am assuming they don’t know why. I have had numbness on the left side of my mouth, lips, that comes & goes. My left oot gets numb also, right now it is the worst it has ever been, which has to be due to current chemo drug. The base of my left thumb is numb thanks to an ill placed IV catheter & leaking chemo drug. That was 5 weeks ago. The horrible bruising is finally gone.
Try to stay positive. Lita is an inspiration to us all. Pity parties are ok, maybe even a must. Praying for us all, Sue.
0 -
No, I haven't tried fentanyl patches yet....saving the big guns for later.
Why use a Bazooka when a Smith & Wesson will do?
Diclofenac (Voltaren Gel) works pretty well....I just have to remember to have DH put it on my back. Methocarbamol pills help, too.
I've heard one has to be careful with the patches as one's tolerance goes up, and then you need to use stronger and stronger patches.
L
0 -
Had my MRI today of my brain.....good news is that my brain is good!! Bad news is that I have METs to my skull that we didn't know about before so add that to the other numerous areas of bone Mets. I will now be having an MRI of my spine because my MO believes the METS in my spine could be putting pressure on my spinal cord which could be causing my headaches. I have been having some pretty serious lower back pain in the past couple weeks along with the bad headaches. He is also wanting to switch my AI once again to Falsodex instead of the Aromasin that I just started on Thanksgiving. Needless to say I am a bit disheartened and down in the dumps. It's my 9th wedding anniversary today and I had a nice dinner with my wonderful husband but all I keep thinking is how many more times am I going to get to celebrate this day? I try so hard to stay positive and believe that I have a long time still but something in my gut keeps telling me not to get my hopes up. I just hate how unpredictable this can be
0 -
Thanks girls for for your responses I will have to talk to my Onc and stop panicking. Hopefully it's nothing xx
0 -
Crazee Jane keep your chin up there are many new treatments coming out that hopefully will keep the beast at bay x
0 -
Crazeejane....So sorry to hear of your latest results. Hopefully, the Faslodex will do the trick. Happy Anniversary and I bet you will have many more! Keeping you in my thoughts and prayers.
Hope
0 -
Crazeejane, Congrats on the clear Brain MRI, that’s wonderful news! Also, while it’s hard to stay positive sometimes, bone only mets really do have better odds. And Happy Anniversary!!!
0 -
Delvzy, I have neuropathy in my face. Different areas feel numb at differnty times. Had a brain mri to check. It was just neuropathy. Hope yours is nothing!
0 -
Thanks Gracie it seems to be on the left side but it is worse in the evening and when I lie down. Trying not to go to the dark side of the internet any more. Yesterday I literally had panic and anxiety attacks and lay in bed sobbing . What sort of pain did u have
0 -
Delvzy, just the normal tingling stuff with neuropathy except around my lips they always felt like they were real chapped by lip stuff never helped!
0 -
thanks, Cure-ious.
I moved about 3 weeks ago from Tampa to s. Indiana outside of Louisville ky. So i've had to find myself an onc, get my IBRANCE ordered, and finally got my pet scan today. What a relief getting that done. That is #2. I moved to be near my daughter and she's been wonderful driving me places. Everything's in louisville and I don't know the roads yet.
Delvzy, we're all entitled to a crying spell and anxiety. I am learning fast to avoid the "dark side" of the Internet as well.
0 -
Thanks ladies for the positive vibes.....you all sure do know how to make a gal feel like a million bucks!! I’m keeping my fingers crossed about the Faslodex. I get my first injection in 5 days along with my Xgeva. I truly hope this is the last change in meds for a while. Much love to all of you
0 -
Delvzy, I have been reading your posts with a great deal of interest. As I read your symptoms, it struck me that I could have been writing them myself. For the past month I have experienced numbness on the left side of my chin. It affects the area from the middle of my chin out as far as the area below the left side of my lip, from my jawline up to my lower lip. There is no pain. It feels like I had a shot of a local anesthetic that just doesn't wear off. It has not worsened or improved during the past month. I did not mention it to my MO when it saw him three weeks ago because I thought it would just go away. I will tell him about it during my visit on December 10. I have not really worried about it. I don't think that I have numb chin syndrome since I am not going quickly downhill. It sounds like numb chin syndrome a fast-moving condition, and this issue just doesn't act that way with me. Instead, in my usual manner, I have come up with a creative explanation until I have a real answer. I have bone mets head to toe. I have decided that the bonemet in my cervical vertebra is pressing on a nerve and causing the numbness. Mind you, I have no actual facts to back it up, but it makes me feel better. It will be interesting to hear what my MO says and does. I hope that you find an explanation and resolution soon.
Hugs and prayers from, Lynne
0 -
Dear Friends,
This post may not actually belong under this thread, but I thought I’d share anyway in case it can help others.
I have been letting the negative noise affect me recently, and tried to take my own life on Thanksgiving night. Not sure exactly how it happened, but when you mix alcohol with a bunch of OxyContin, well, not a good idea. I immediately called a friend who called 911, so I’m still here to fight another day. I was in the hospital for three days, have some liver damage (which is slowly correcting itself), and am still going through (cold turkey) opiate withdrawal. It is hell. It’s been over a week and I still have the shakes, go hot and cold, etc.
The interesting part is how quickly I fell. Anyone who knows me calls me positive, amazing at dealing with this disease, etc. That’s how fast you can go from happy to severe depression.
Please, my friends, be careful with alcohol. Or make sure if you drink to have someone with you. I have a lot of counseling coming, so hopefully I will fully recover. This disease can really mess with your head if you let it.
May God bless all of us fighting hard every day.
Laurie0 -
booboo1, I'm so glad you are here to share this. So glad you called your friend for help. TBH it's something I've remotely considered and have put in the back of my mind for the day that comes when all else has failed. Thank you for your experiences which offer a different perspective.
God bless you as you recover and move ahead.
0 -
Laurie, Thank God you took that step and called your friend. You are lucky that you were able to get to the hospital in time to get treatment. It is easy for us to get dragged down into that dark place where everything seems hopeless and lonely. Pain medication can push us there quickly. Suicide is never a good answer for the person attempting to take his or her life or for the people who are left behind to wonder why it happened and what they could have done to prevent it.I thank you and applaud you for taking the time to tell us about your experience and warn us quickly it can happen. Sometimes we try to handle our MBC diagnosis and all the baggage that comes along with it by ourselves. The fact is, we all need help - friends, doctors, counselors, family. Our challenges are great, and we are not superheroes. Alcohol is part of the mainstream of life, and it is easy to forget that it is a powerful drug that can affect our mood and interact with medications we are taking. I hope that your recovery from all this goes smoothly and quickly. I will keep you in my prayers. Lean on your friends as well as everyone here. What happened to you can easily happen to anyone. Let us know how you are doing. Thank you again for the warning.
Hugs and prayers from, Lynne
0 -
50’sGirl and Muddling,
Thanks so much for your replies. I guess I’m still stunned with how fast I went from being fine, actually pretty happy, to utter dispare. I know I wasn’t really ready to end it or I wouldn’t have called my friend.
I am a recovering alcoholic (12 years sobriety) who picked up once I was diagnosed with MBC. I am now back in recovery, and because of the liver damage I did, was told if I ever drink again, I’ll need a liver transplant. Obviously I would be at the bottom of the list because of our “terminal” designation. Talk about scaring the crap out of me! I can assure you I have had my last drink.
Anyway, mine was a perfect storm. An Alcoholic, and taking opiates for the last three years for pain (I am completely off OxyContin now, and only have minor pain)...it was a matter of time until I crashed. Again, I’m sharing for those who may relate to what I’m writing....none of us want to be gone before our time. And I truly believe there is much hope with the current drugs, as well as those that are in the pipeline. How sad it would have been if I would have ended it only to find that a cure is found next year, or the year after. It’s possible friends.
Thanks again for listening. If you find yourself falling into depression, please reach out here or to someone you trust. I am SO glad I did. I have a lot of living left!
Love to all,
Laurie0 -
thank you for sharing your scary bout with suicide thoughts 🙏🙏. Sending warm hugs and healings your way.
Some painkillers makes me feel like this, and it is scary..
I have given up alcohol (never felt any great love for it) and I didn’t know about ibrance and alcohol... good to know
0 -
boo boo my friend did the same thing 2 weeks ago when her husband called it quits. She doesn't have cancer but can't live on her own. Unfortunately she had a heart attack and passed away from a heart attack from mixing oxy with alcohol on her own so please please be careful. I myself got very distressed by my numbness and having to have an ultrasound on my liver to check rising levels and I was in a bad place myself last week x
0 -
50's girl what a relief to hear of others with this Numb face syndrome though mine dies give me pain if I lie down . It also feels like a burning or coming out of an anesthetic. I got myself so terrified I thought I would be gone by March!!! I just don't want my Onc to go crazy with brain andbir head MRI as there is only so much anxiety I can handle. Just having a liver ultrasound next Thursday because my liver enzyme markers have crept up in the past year was enough to send me into a complete panic attack . Thank you for sharing your symptoms it does help
X
0 -
Dear Delvzy, Utopia
I know how very fortunate I am to still be here. As a friend told me, “God is not finished with you yet". If I had not been drinking, I assure you this would not have ever happened. Alcohol is a depressant, and now I see clearly why I should never have picked up again, especially with this disease. I will spend the rest of my life sober and making it up to my dear husband, who has not said one negative thing about this whole episode. He is so supportive and loving. I am a very lucky woman.
I am also now off of the Oxy and hope to stay that way. If my pain comes back and I need meds to help, it will not be Oxy. That stuff is scary.
Utopia, thank you so much for your sweet reply. It means so much to be able to share with my MBC sisters and brothers
All the best to you both
Laurie
0 -
Looks I will be most likely officially joining you ladies. I have been having increasing pain for over a month and thought I broke something when I tripped in my garage. Unfortunately my CT scan came back with this result.
Soft tissue mass involving the left sacroiliac joint and causing
destructive underlying osseous changes measuring approximately 7.6 x 7.0 x 6.9
cm which also involves the quadratus lumborum and extends into the gluteal
muscles. A 1.6 cm soft tissue lesion is also seen in the left sacral body and
may be partially extending into the sacral canal. Another 2.7 cm soft tissue
mass is seen at the sacrococcygeal region.No wonder I have been in pain. I am in complete shock since I feel fine other than the bone and muscle pain and I went through all that chemo so this wouldn't happen.
I am 48 and have two teenage daughters. I need to get a bone biopsy done this week to confirm for sure that it mets and also to see ER/PR/HER2 info.
Can anyone let me know how painful a bone biopsy is? Anything I should do to prepare mentally or physically?
My oncologist gave my a referral for a radiation oncologist for the pain but said not to have that appointment until we get the biopsy data back. Plus to make matters more complicated my family is flying to Germany on the 21st to have Christmas with my sister. We spend a week with her and then we are heading to Austria to ski for a week. Obviously, I can't ski but I would love to still be able to go. My oncologist was not real excited when she heard I would be gone for two weeks but said she would try to make it work. Am I crazy to still want to go? I feel like I can sit around at my sister's house just as easily as at my own house. It is really painful to walk but I figured I could get a wheelchair at the airport.
I have been reading this thread and all you ladies are amazing. I feel a bit less stressed since reading. That 24 month survival rate you see on the internet is scary. Glad to see so many of you doing well.
Thanks!
0 -
Booboo. So glad you reached out and starting recovery. Thank you sharing your story. I have had some dark days...it’s so easy to get depressed as winter approaches. Sending hugs and prayers.
Took my first wheelchair ride at the airport. I felt I should be apologizing since I don’t look ill. I know crazy what we worry about.
I have been seeing a psychologist for the past 3 years. It has helped me so much with MBC and other issues. It was hard to admit I couldn’t deal with what life was throwing my way but so worth it ...no one should fight this fight alone. Maire.0 -
Melb - so sorry to hear about your impending diagnosis..I was diagnosed a month and a half ago with stage 4 and a single bone met to the L1 vertebra... it's not a fun diagnosis, and just like you I did the works in terms of treatment...Chemo, rads, bmx, tamoxifen,letrozole...I'm 47 and have 2 teenage boys ....it is tough and sometimes I feel is this just a horrible dream? My sisters over here asked me to take one day at a time and to breathe.. there is a thread called ..Life doesn't end with a stage 4 diagnosis...that gave me some hope..
The biopsy to the bone was a bit painful as they don't put you under compete anaesthesia, but it only lasts a few seconds. I would Take the strongest painkillers post biopsy...
Regarding taking your trip,it's not going to hurt anything...go for it...I literally had to wait over a month before I got my appt with radiation onco, although I wasn't in any pain. My mindset now is to take every possible trip, and try to live life to the fullest, even if we are not 100 percent..We have to grab those memories...
Good luck to you and take care...
0 -
Melb, travel if you can. I have brain mets and both my MO and RO don't want me to fly, but i can drive.
Just got back from the Grand Canyon in October...we drove. Kinda hard on my back, but I got thru it. Great memories with dh and dd, and that's what u need to do...spend time w.family.
0 -
that looks beautiful Lita, thanks for sharing...
0 -
Gorgeous picture, Lita! I love the Grand Canyon.
Melb, I concur with the others about traveling. You know you best and as long as you feel able and can make accommodations like airport wheelchairs, etc., you go for it! You'll cherish the time with family and so enjoy those memories that will help take your mind off all this for a bit. I'll be traveling with my family to Banff in 6 weeks; mostly for work, but fun time, too, and can't wait!
I had a bone biopsy to my left iliac crest over 3 yrs. ago, and for me, it really wasn't too bad. I had local anesthesia, and could hear the drilling and talking, but never felt anything except pressure. The meds were the worst part for me because I felt very groggy afterwards and just hated that feeling. It was required I have a driver take me home, and a good thing!
0
