Bone Mets Thread
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TwinkleCat - Thanks for asking. The biopsy is today. I am super annoyed they could not get me in for a week and a half. I fought it but they are short staffed with the holidays. Mine is the illum too.
I m so cranky at the moment since I couldn't drink any coffee this am.
I am so sad to hear about your progression. I hope they can find you something great that works.
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Hi all,
I’m newly diagnosed with bone mets to spine, hips and ribs. I’m having a CT guided biopsy on my spine on Tuesday next week to see if the cancer is still HR positive. My question is should I also have pelvis/hips biopsied? Can I have one type of cancer on my spine and one type of cancer elsewhere on my skeleton?
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Hi everyone, I hope the festive season is helping keep spirits up no matter what scans & blood tests & aches & pains say. I do love this time of year - especially my over-lit Christmas tree - I can never have enough sparkly lights!
It's also the season for a big change for me, after 4 years (exactly - my surgeon confirmed biopsy results = breast cancer on 12 Dec 2014), and working full time throughout while trying to rock the single mom life, I have decided to apply for disability due to incapacity / ill health. We get very little in the way of disability through government, so I am grateful my employee benefits and personal life insurance policies are sufficient for me to be able to "retire" comfortably. It's a 3 month process of medical reviews, interviews and endless completing of forms, but worth it. I am really struggling with fatigue and my daughter deserves what little energy I have.
I'm on a two week break from chemo - my hemoglobin count is 11.3, so 0.1 above the level at which medical aid will approve treatment to raise it, but it's been there consistently for a good few weeks - long enough for me to need 12 to 14 hours of sleep a day. So I'm "working" from home for now, trying to contribute enough for me to not feel guilty, in between my naps.
Blood tests show my liver is stable, I'll have scans early January to confirm, but I'm feeling confident on that front. My bone mets have been extensive since diagnosis and I think that's where my problem is now. Sternum is tender to the touch, niggles and aches in my lower spine & pelvis (I'm on 25 microgram Fentanyl patches, so no pain I can't deal with). My skull is very sensitive though - a patch about the size of the palm of my hand is very tender - it feel like I've had a too tight ponytail in all day. Trying to not think about brain mets, as I know the blood/brain barrier isn't there, but that level of denial is hard to maintain!!
Hanging on to getting through the next few months of exiting work and scans and looking forward to being a stay-at-home mom for my princess for the first time ever. 13 more sleeps till Christmas Day!!
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Novagirl,
I'm not a doctor, but I don't think you can have two different cancers in your bones. Now that I type that out though, I guess nothing is impossible, but most likely they would be the same.
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HI Lynne,
Thanks for your reply. I am not good at asking for help, but I’m learning it’s the only way to deal with many of the challenges we face. I now have a psychiatrist (found him on Teledoc) who I really like, and am back to seeing my therapist. I am on depression meds although my psychiatrist is waiting to see whether I need a med change (or not). I am no longer going to pretend to be happy or up for others when I’m feeling the opposite. I need to learn a whole new way to reach out when things turn dark, and I am willing to do that. This journey is not easy, but so worth it. I am very happy to still be here!
Laurie0 -
Thanky you Bigpeaches that makes me feel better. This is all so overwhelming.
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Novagirl, so sorry you're here, but welcome and lean on us for advice, encouragement, and prayers. I agree with BigPeaches, I think it would be highly unusual for there to be two types of cancer. I've never heard of anyone on these boards getting more than one bone biopsy for a dx.
Karz72, imho you're making the right choice. I had a job that I love, love, loved, but once MBC came into the picture I had to think of my family and finances, and made the hard decision to retire and apply for disability. Strange to think we'd be better off financially with me not working, but if something were to happen to me, my dh would get a sizeable amount of my disability award, which would see him through until he was at retirement age. (We were both 59 at the time).
For all us December scanners, wishing for stable or better!
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According to my ultrasound I have spots now on my liver but they are too small to show up on a CT scan, My Onc thinks they have been there all along. He wants to try IV chemo Taxol I think early next year but if I do it I will go private with a cold cap. I mentioned my numbness and pain in my lips and jaw and he wants a MRI as he thinks the tumour in the bones at the back of my skull myhave grown and be pressing on a nerve,
Does it ever end?
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Delvzy- so sorry to hear about your scan results. Having a plan is good. Enjoy the holidays and hoping your next test brings better news. Cancer does feel never ending. 😕. Sending hugs.
Karz72- You’ll enjoy the extra time with your daughter. It’s a tough decision, but quality of life is the goal.
Jackzie- Sorry I didn’t read back far enough to get the background! Hoping the pain gets better soon.
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If I feel like shiz, I say so. It does me no good to "fake it"with family and people anymore.
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thanks Lita u inspire us all xx
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Delvzy... I too am having the numb lip and jawline. I had an appointment with my GP today and I mentioned it and she told me it’s probably just a pinched nerve. I have an Onco appointment Tuesday so I’ll be telling them. I know I shouldn’t, but I’ve read many articles about what this “could be”, and for a breast cancer survivor 9 years out...it doesn’t sound good. I try not to go to that dark side, but when your spine hurts so bad that pain killers aren’t touching it anymore, and then the numbness in my chin, it’s a little hard not to. I pray you get some relief and for Christmas...all I want is a cancer cure for all cancers
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This might be a dumb question, but what does bone mets pain feel like?? I have had the bone mets diagnosis for over a year now. But recently have had more pain in the back of the neck ( osseous lesion at C2 on PET in 2017) and now pain in the sternum. The chest pain is a burning ache in the middle of the chest that goes through to the back. It comes and goes. And the neck pain is usually more at night and is in the neck and back of head and is a sharper type pain. I see my MO Jan 5 and will discuss with her, but I wonder if it is the cancer or something else. Seems like all aches and pains anymore I think is cancer related, but may not be all about the cancer.
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Another thought/question. If the aches and pains are getting worse/and or new areas of pain could that mean bone mets is progressing?
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candy....I believe the aches and pains we experience are due to lactic acid formation by cancer cells which cause inflammation. According to some doctors––see the anticancer diet by MD David Servan-Schreiber–– cancer is sustained alternately by inflammatory type foods, such as our typical western diet rich in processed and junk foods.
For the past four years, I have personally been managing all my breakout aches and pains with an anti inflammatory diet and anti oxidant supplements. I have taken also Tylenol at times when absolutely necessary, and wear a 25mcg fentanyl patch that makes hardly any difference to my pain level especially after physical exertion, as I have two collapsed vertebrae.
Recently I developed a persistent pain in my left femur and hip bone that spread from my lower back that scared me. My pain specialist prescribed Lodacaine patches. But since they were delayed, I still don't have them due to insurance approval process, I have managed to reduce that dehabilitating pain that made me limp, by myself with an increase of low glycemic fruits and vegetables, omega 3 fatty acids, and minerals such as magnesium, potassium, calcium etc etc and daily excercise.
Needless to say, I'm very proud of these results ....I hate taking drugs...all drugs!!
I hope this is helpful to you in some way. I find all aspects of cancer mysterious and confounding at best.
Unfortunately our doctors can only do the best they can with the little knowledge they have about this dreadful disease. I find that while they tend to blame the cancer, all my worst problems stemmed from the SE of their TXs. But what choice do I really have and do I want to alienate my MO? Obviously not!
So now I'm learning to protect myself, BEFORE, my remaining health is compromised and destroyed by the medications or cancer by providing my body the nourishment and constant dexofication it needs.
May God help us all and guide our doctors as we patiently wait for a cure.
As to your last question, I was in a lot of pain before my last pet scan and dreaded finding out the results. However I was told that not only the spots in my bones had deminished but the uptake was less. So go figure....l then attributed the pains to a lack of excercisedue to cold weather and the need to reinstate a bone medication that I was receiving now every two months, instead of every month. As soon as I got the xgeva shot all pains dissolved...the mystery of cancer....
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Well I am going to see MO tomorrow for an unplanned office visit. I have had A LOT of new pain this last week and I texted my MO yesterday to see if she could see me Monday morning. ( She gave me her cell number when she became my new MO and I had never used it until now.) The pain is in my sternum, spine, shoulder blades and neck. And the neck pain goes up the back of the head and down the arm to my fingers. The neck and spine pain is worse at night when lying on my back and the sternum pain worse when turning over on my sides in bed. And is a dull pain all day. I am going to ask for an MRI of the neck and spine---I have never had one. I wonder if the bone mets is worse or pinching a nerve in the neck? Maybe a fracture in the vertebrae in the neck? Kind of creeps me out. Is things worsening? My sister called me yesterday concerned. We didn't voice it but we were both thinking the same thing--are things progressing.
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Candy, the neck/arm sounds like a pinched nerve to me, I have one right now too. Of course, best to get it all checked out. Good luck 🙂
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Hi Candy - so sorry you are dealing with all that pain. The not knowing/wondering is the worst part, so glad you are going to the oncologist tomorrow and can get some answers and form a plan. Your profile doesn't say - have you had radiation in the past? IF it's bone mets spreading and worsening, at least that is an option. I had several vertebrae fractures and collapses when I was diagnosed, and 3 weeks of radiation afterwards. (every day.) I do tend to agree with Miaomix - quite often it's the medications that we take for the cancer that actually CAUSE the pain. I have horrible arthritis in both shoulders that I am sure was caused by chemo. Every time it's going to rain or snow, the pain is so bad I can't lift my arms up or sleep at night. I have been NED for almost six years and I still have aches and pains all over - sometimes I feel like I am 90 - so don't panic yet. Please let us know how the appointment goes.
Sending you good thoughts and hugs...
Andi
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Andi- I have not had radiation in the past.
Illimae- I think the neck thing sounds like a pinched nerve too. But I have not done anything physical to cause it. I am a pretty sedentary person, sorry to say. That is what makes me wonder if the bone mets has caused compression on the nerve- from worsening or a fractured vertebrae.
I will keep you posted.
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Hello all,
First I want to say thank you for sharing all that you do! It has been very inspiring and helpful to read through the posts and know I'm not alone on this journey.
I was Dx with bone mets in late October after many years of remissions. I have had 2 Zometa infusions and just finished my first cycle of Kisqali/Letrozole combination.
I'm still working on wrapping my head around this Dx as I guess I had let my guard down. I thought I was at the best place in my life- both career and relationship and overall well being. So it has felt like a slap in the face. I still have my moments and go to the dark side of thinking but I am getting there.
I wish you all peace and love on your journey!
Sherr
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Just an update from my office visit this morning. My MO is ordering an MRI of the cervical and thoracic spine. She mentioned my history of rheumatoid arthritis as well as the bone mets documented in the cervical and thoracic spine. She said it does sound like compression on a nerve, whether it is from the RA or cancer. She told me to continue the Ultram pain med use and added a muscle relaxant. And to use a heating pad. The kicker is the receptionist said we have to have approval from the insurance to order the MRI and they are allotted up to 2 weeks to give approval. They will call me when they get the ok to schedule the MRI.
I get frustrated sometimes. I have not had a good nights sleep in almost a week from this neck thing. Last night I paced the bedroom when the pain was at its worst. My MO is WONDERFUL, but I wonder if I convey what I am feeling very well. Our visits just seem so clinical--scans, labs, etc. No real talk on how I am taking all this emotionally. I had an appointment with her for the 'routine' visit at the beginning of Jan. This appointment was unplanned. At the end of today's appt she said to cancel the Jan appt since I came in early ( today). Is there just not much they can do for us MBCers and so we are not regarded or prioritized highly? Also, I told a friend I was calling off work for today ( FMLA absence) due to the neck issue and the doc appt. The friend asked if I was going to work after the seeing the doc since it was at 9 am. Sorry, but I think it is ok to miss a day of work--not sleeping well, in pain, and (not to pull the cancer card but...) duh I have cancer!! Talking about priorities, work is not very high on my list right now.
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TNM I saw my Onc about the jaw pain and numbness which is getting a bit worse, He wants to do an MRI on my neck and back of skull where I had mets 2/12 years ago because he believes one has grown and is pushing on a nerve. It's relatively common if you have back of skull mets so if it is a met pushing on a nerve they will radiate it xx. Sending healing thoughts for answers for u xx
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I just wanted to add that I got the results of my PET scan today and I'm very relieved to say that I had a clear PET scan and the pains I were/am feeling were just that...pains.
It's so easy for all of us to think the worst immediately. It's also always so easy for us to worry about every scan. That's what living with MBC is I guess...'our new normal'.
Praying for strength for all of us and praying especially for a cure.
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Delvzy...thank you so much for your response! I have an appointment tomorrow morning at 7:15 with my onco and I plan on not leaving until they find out what’s going on. I had an increased uptake on the back of my tongue on a PET a couple years ago. They sent me to ENT who did biopsy and said all clear. But no one has followed up on that. And the numb chin/lip is making me bite the inside of my jaw, so I have a raw place on the inside of my right jaw. I’m wondering if the former increased uptake on the back of my tongue was early metastasis and wouldn’t show on an MRI/CT? My thoracic and cervical pain and up the back of my head has gotten worse. I’m going in the morning hoping for the best, but prepared for the worse also. I will update as soon as I know something. Thank you again for your response!...TNMTNGA
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Jack5ie- WooHoo on your PET scan results!!!! When we get a good scan we need to shout it to the world. Don't you love 'our new normal'.
Delvzy- Sending healing thoughts for you as well. Let us know your results. I will as well.
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I just had a dentist appointment and he says he sees nothing but my jawbone is erroding away. So I plan to tell my onco that tomorrow too. I’m wondering if that too may be bone mets that just haven’t been caught yet? I just want to know. The waiting after tests is the hardest part for me. I hate the wait!
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Jack5ie...congratulations on your results!!🎈🎉 That’s awesome!
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Sorry I think I mistook Delvzy's comments as pertaining to my post. TNM- Hope things go well for you too.
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candy...no problem at all! I hope things get b
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Sherry, wanted to formally welcome you, while at the same time hoping I haven't already done so - darn chemo brain. This dx is such a gut punch. I'm close to 2 years in and while most days are ok, I still get that 'what the damn hell' time. You're allowed. I hope your treatments treat you kindly and effectively knock back the sneaky cancer cells.
Candy, don't you just want to say "WTF people?!!" Uh yeah, taking the day and may take tomorrow off too!
Delvzy, TMN, sending healing waves of support your way.
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