Bone Mets Thread
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Hey Yall!
Just piping in again about the numb chin syndrome....it was 3 1/2 years ago that I developed this syndrome. I let it go for a while, but finally went to see my onc whom I had not followed up with in several years. The ncs, combined with a higher TM resulted in a scan that led to my diagnosis of bone mets. Strangely enough, there were no mets to skull, so it may have just been coincidental that I had ncs. but I'm so thankful that I did, otherwise I would have not followed up with onc.
Now I have a really strange situation that I want to see if anyone has ever experienced..... Short history first....took Xgeva monthly for over 3 years. Had a tooth extracted during that time frame. About 4 or 5 months ago, I started developing symptoms of what I thought was ONJ. I even have a small area of exposed bone over the area where the tooth was extracted. My normal scan in September indicated "complete opacification of left maxillary sinus". I didn't have a clue what this meant and apparently neither did my onc as she didn't really recommend any further testing. I finally went to see an oral surgeon last week about the possibility of ONJ and he is very concerned about the opacification of the sinus! He referred to it as a mass that has completely filled the sinus area! He mentioned sinus disease, absessed tooth, ONJ or cancer spread! Needless to say, I am terrified of just about all of these possibilities. I will have a dedicated scan of the area this Thursday night and will be scheduled for a biopsy, sooner rather than later, I hope. Have any of you ever had anything similar to this; especially any that may have had ONJ?
I would so appreciate any feedback and your prayers. Will follow up once I know something for sure.
God bless you all and have a wonderful day!
MM
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melb,
The bone biopsy wasn't too bad for me, they didn't knock me out but did give me fentynal which worked. Just feels like a pinch.
I totally get what you're saying too, I wen't thru all the chemo and meds like a good girl and WHAM, 10 years later it decided to wake back up *sigh*
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Laurie-I'm so glad you called a friend, and am glad you are still here. Lately, I've been down. I don't know if it's the latest chemo not working, or what. I even told my husband today, I was thinking about stopping treatment and he said NO. I said it was my choice, unless I'm in a coma, then it's your's. I said I guess you'll have to knock me out with a sledge hammer. He said he has one. Always the funny one. I know I'll keep fighting, but I totally understand how you can be happy and then suddenly very depressed. I glad you are getting help (maybe I should look into it), and are done with the alcohol and oxy. Big Hugs!
Lynne
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Melb-Take that trip! The treatment can wait until you get back. It's important to see people you love! We travel frequently, and I've postponed chemo for a week or two after we get back from our trip. My oncologist says as long as you are no longer than 2 weeks behind your scheduled chemo, she's ok with it.
Good luck!
Lynne
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Girls I was put on my last oral chemo with terrible fatigue and depression. One minute I was coping with life and now I am not. I sleep half the day and have no motivation to even get out of bed. The Numb Chin lips gum is still there but now there is pain to the jaw when I lie down. I don't get any more than 2 hours on an outing before I have to come home and crawl into bed. I am so frightened that's all there is in life left and then it's all down hill. I am usually an upbeat happy kinda gal
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hi Delvzy,
I’m sorry you are feeling so low energy-wise!
I can completely relate. I go through waves of it. Last night I slept about 12 hour and am writing this from my bed right now as I try to rally to go exercise.The two things that have helped me with the fatigue and depression are #1) the best helper is getting exercise. I can’t say this enough. The hard part is getting up and getting going. I started with just 20 minutes a day and just pushed myself to do it but I really started to feel less fatigued and depressed in about a week of really making myself exercise. I started this about a year ago and it really made a difference in my energy levels
#2) I finally gave in and went to see the psychiatrist in my hospitals oncology department. Depression and fatigue go hand in hand quite often. While the exercise helped with my energy levels, I still have been feeling this exhaustion that goes along with depression and anxiety. I have never been one to take a lot of medications but I was at my wits end with being depressed and exhausted. I started on Lexapro about a month ago. While yes I write this from bed and from sleeping a lot last night, I don’t feel depressed thank goodness!!! And with that I will be able to push myself to go exercise today.
It’s really really hard to feel depressed and fatigued. So far these two things are the things that have helped me the most. Maybe you could try one or both of them and see how you feel afterwards?
Big hugs! Brenda
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Thanks for responding Brenda it's nice to know u are not alone. It's very hot here today so I have slept all day with the ac on but that certainly doesn't help with the fatigue and deo
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Dear Lynne,
Thanks so much. I knew I could trust the folks on this thread to understand how low we can go, especially if you are under the influence. I am very determined to get back to where I was with my sobriety, because I never want to go through something like that again.
I am fortunate to have a great support system, but am seeing a psychiatrist to determine whether or not I’m on the right depression meds. I am also seeing a therapist, and have returned to AA. I think I have the bases covered.
Anyway, thanks for your response. I pray God’s blessing on all of us as we LIVE with cancer!
Hugs,
Laurie0 -
Dear Delvzy,
You are not alone! Depression is hard to kick on your own, and I really believe that LovefromPhilly hit the nail on the head. Exercise and meds are probably the best combo we can do for ourselves. I am not a big one for exercise, so that is going to be my motivation for 2019. I want to be as healthy as possible, and I know it will not be easy. But I am now off all of the pain meds, alcohol, and am currently not on X. I see my onc on Dec. 19th, so we’ll see if the liver issues have cleared up, and then I expect to go back on X.
Just wanted you to know you are loved and accepted any way you feel. I am so grateful that the ladies on this (and other) thread are so accepting, no matter what.
Please reach out anytime you need support. Maybe also look into seeing a psychiatrist for depression. There’s no shame. We are all carrying a huge burden with MBC.
All the best,
Laurie0 -
Hi friends,
Laurie thank you so much for sharing your struggles. It helps knowing we’re not alone. I have more to say but I’m still wrapping my mind around a bad scan. Just knowing you all are out here helps.
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Hi everyone, I'm just checking in to let you all know I'm still here and that I'm thinking of you all.
Occasionally I find I need to go on a sabbatical and think about things other than cancer or I find myself obsessing too much so that's where I've been for about the last six pages.
I hope and pray you're all still ok and that I haven't missed out on giving support to anyone I should have
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Hello all...just wanted to add that a bone scan did not pick up the bone mets to my sacrum. When I got the results from the bone scan in early November 2018, I was so happy to go about my life even with pain thinking I was still cancer free after 8 years. I didn't get my bone mets diagnosis until after an MRI on New Year's Eve 2017 when it was submitted to my patient portal.
I now have new pain near my tailbone and also on the lower part of my rib cage in a very small area. The tailbone pain is only when I move and the rib cage pain is only when I press on the area. Does the rib cage pain sound like possible mets? Anyone ever have pain just when pressing on the area?
I'm scheduled for another PET scan on December 13th. Wish me luck.
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jack5ie: my Oct/18 PET/CT lit up w/bone Mets (I now refer to myself as the Spotted Elephant From Rudolph's Island of MisFit Toys) my pelvis/sacrum appeared solid red on the scan, that is where I feel the constant pain, I have a few areas in my rib cage that are tender like a bruise when pressed, I assume that those are the areas where Mets showed on the scan but haven't taken the time to count & identify the rib on scan or my person . . . I just try toavoid pressing on the area.
Also sending positive vibes that the rib pain is not Mets :
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RandyRat1: I'm so sorry to hear that. How do multiple bone mets get treated? I'm assuming all the areas can't be radiated?
So basically you're saying that bone mets can be painful to the touch when pressed?
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Jack5ie,
That bruised feeling was what I experienced before I got my DX. I remember pressing on my breast bone while exercising and wondering how I hurt it working out. It was achy rather than sharp pain.
Sorry you find yourself here, but you’ll get great help from this group.
My bone mets have been stable for over three years. There are good treatments!
Good to see you Leapfrog!
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lwrite,
I already have bone mets to my sacrum and after radiation I am being treated with Ibrance/Faslodex/Xgeva. If these new pains are in fact further bone mets, then that means these meds are not working. I truly hope that is not the case. I was originally on Tamoxifen for 5 years and then Femara for 3 years and then the Femara stopped working.
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Hello Jackie, Boy these scans are hard to understand! A CT missed my bone mets (just 4 areas , we hope) but a bone scan picked them up. When I asked my Onc. why she said that since bone scan was a nuclear tracer scan it was more sensitive. Hard to keep up. I wish you well. Good luck with treatment.
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Thank you Snooky. Same to you.
Thank you to everyone else as well.
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jack5ie- I had 10 rounds of Rads to the worst Mets on my Spine, sacrum, pelvis and 1 shot to my right hip, dealing with the itchy burnt skin now but I am in less pain and I’m not limping as bad/much. I started Ibrance/Femara on 11/30 with an infusion of Zometa and a Shot of Lupron on 11/29 as I’m 43 and still very much premenopausal. End of Dec I should get Xgeva instead of the Zometa. My RO said that he will hit the spots as they become painful, if they become pain as we are hopeful the meds knock ‘me back and they aren’t able to cause pain. Morphine is also a daily thing, which causes cookies to be a daily thing
I hope that I am very much Wrong, and that that the pain you are feeling is not a progression or spread, I can only speak of what I have experienced
I did 5 years of Tamoxifen and had just under 2 years of Bliss as I was SideEffect Free and managed to drop 25 of the 50 pounds of BlubberBelly my body packed during Tamoxifen and Effexor to combat the horrible rage I experienced.
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Hi Girls my worst pain was always in my ribs and after putting up with 6 months of pain I finally got a bone scan and they found mets to ribs hips spine and back of skull. I had radiation to spine which is where my L1 and L3 broke during a vigorous physio session. I still Have an aching back but now I have this gum jaw pai and numbness and other various pains. Acupuncture to my rib area and cooking up Chinese herbs under my traditional Chinese medicine doctor help a little . I was cancer free with previous ILC and IDC for 8 years and honestly thought by that stage I was safe from reoccurrence
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Thanks for all the info everyone. I guess I should try not to worry (yeah, ok) and wait to see if the PET scan shows anything. It's really awful what we all have to go through and I just hope and pray they find a cure in our lifetime.
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jack5ie- I’m right there with you! Happy to be the Poster Boobs for the Cure!!
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I don't know whether this is useful but I was dx two years ago with mets to spine, ribs, sternum, hips, femur, shoulders and skull. The most painful areas at that time were my ribs because they had stress fractures due to the tumours in them. That pain was sharp. I've been on Ibrance/Letrozole/Xgeva for two years now (after a bilateral mastectomy and lymph node clearance) and the pain in my spine, where I have three areas of activity is a sharp ache which sounds like an oxymoron but it's the best way I can describe it. The pain in my sternum is still there and feels like a bruise if it is touched. Xgeva has sorted out my rib fractures and they are sclerotic. At scans I'm described as stable. Ibrance/Letrozole/Xgeva is a very slow acting treatment but I would suggest if you're at all worried, ask your oncologist without delay. I hope this is of some help and I send you my very best wishes.
Thanks Iwrite, nice to see you too x
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Leapfrog we have a similar diagnosis, unfortunately Femara failed me after 18 months and they found cancer cells in my bone marrow which means I need a hemoglobin blood transfusion every 4 weeks
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Delvezy....Ibrance/Letrozole failed me the first time around. I had a bone marrow biopsy and it showed cancer cells. I was then put on Taxol. That did the trick for the bone marrow. I was then put back on I/L and I've been on it for 8 months. My hemoglobin has been within normal range so far.
Hope
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Hope Did u lose your hair with Taxol and is it IV? I am terrified of going down that road again but if it knocks it out of the bone marrow it would be good . What did your hemoglobin levels get to?
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Delvzy and nonahope...my haemoglobin is low this cycle, taken last week. at 87. I'm not sure whether that's classed as low in your case; perhaps yours was much lower, but I'm hoping at my blood test tomorrow after my second week's break will be higher. I've been focussing on eating more iron rich foods but I hope my bone marrow isn't involved. I don't expect it to be. It usually makes it back up to 98 or 100 after two weeks' break. A transfusion was mentioned if it hasn't come up. I'm sorry about the cells in your bone marrow and all the transfusions - not a lot of fun. I hope it all works out for you. Hope, I'm glad it has been going well for you for the last 8 months.
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Lesofrog that is low it should be around 120. Mine hovers around 90-100 after s transfusion but once got as low as 57, The tiredness and breathlessness is terrible. If the chemo tablet that I am having such a reaction to is not working I have been told it will be Taxol with a cold cap
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Delvzy...I think it dropped around 6 or 7. My onco's first thought was the transfusions. Then, when he did the bone marrow biopsy (ouch), he decided on the Taxol. Yes, Taxol is IV. I have a port, so no big deal. I had no problems whatsoever, except for neuropathy in my feet. I had a total of 15 infusions. Yes, I lost my hair. I did not cold cap. I love my wigs!! Even after being off the Taxol for 8 months, I still don't have enough to go without a wig. Plus, I never had great hair to begin with.
Leapfrog...According to my lab report a normal reading is 11.2 - 15.7. Mine has been staying within that range, even with the Ibrance/Letrozole 125 mg. that I'm on, since being off the Taxol..
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melb44 -- have you had your bone biopsy yet? Mine wasn't too bad. Because they biopsied my ilium (hip/pelvis), I was able to be fully sedated -- in that area, they don't need you awake to re-position or anything. They had me lie prone, and they went right through my 90's butt tattoo!
I had my first follow-up PET scan last week... good news is that my primary breast tumor is no longer metabolically active, and only on axillary lymph node still showing some mild uptake. But I've had progression in my bone metastases (as well as some resolution). It has spread into the surrounding bones of both shoulders, and throughout the pelvic bones. Plus I have new activity in my sternum and both my cervical and lumbar spine. Such a bummer! My MO gave me a referral to Emory, so we'll see if there are any trials or other other more cutting-edge approaches that might be available for me.
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