Bone Mets Thread
Comments
-
Philly I'm like you - extensive bone mets throughout my skeleton at de novo dx and never had any pain that made me think something was wrong beyond the occasional backache that I attributed to getting older (I'm mid 50s). I had already lost over 1.5" in height due to the mets in my spine! Worries me that bone mets could get so bad and I had absolutely no idea there was something wrong because if they start growing again I probably won't know until something breaks. I threw my back out a few weeks ago and was worried that spinal mets were getting worse, but MO gave me a prescription for a muscle relaxer that cleared it right up. The only real bone/joint pain I've had so far was the first few months of Herceptin. I did add a second pillowtop to my mattress because I'm a side-sleeper and Herceptin made my hips ache.
0 -
Thank you ladies. I guess my scan will tell me. None of my back pain feels deep or achy. I feel like it gets tight when I do housework.
0 -
For me, it started as a back ache but quickly (like within a week) was unbearable. Went to an orthopedist and he diagnosed me (after x-ray) with a collapsed disk. (x-ray didn't show the large tumor pressing on it to make it collapsed) About a week later I woke up and couldn't move my left leg at all and was in so much pain I was screaming. Finally they gave me decent pain meds and scheduled an MRI, bingo, bone mets everywhere. After 10 years of being cancer free.
0 -
In the past week I’ve found out that my back and hip pain are due to 2 new tumors - one muscular and one on my pelvic bone - and that I also have 2 nodules in my left lung. I’m scheduled for bronchoscopy with biopsy on Monday morning and radiation (10 rounds) starts Monday afternoon. Hoping the radiation helps as every day it gets harder and harder to even walk. After a few steps I’m in excruciating pain. It’s amazing to me how quickly bad can become worse...
0 -
Hi all. Reading your last posts about pain---weird how we have bone mets and some have pain, some not. And to varying degrees.
I wanted to give you an update from here. I saw my MO yesterday. You remember my posts from a couple of weeks ago. I asked the MO about the bone scan report and my confusion. I asked " Do I have bone mets" ? She said "Yes". She said the bone scan is not as specific as a PET scan. And since I have rheumatoid arthritis also, we may never get a scan that says- "This area is mets, this area is RA". But my initial PET at diagnosis showed osseous and sclerotic lesions so she is confident in labeling me bone mets.
I also discussed pain with her. This last week I had a "flare" I guess ???? The pain was horrid. In the shoulders, elbows, hands, feet. I hurt and felt kind of sick to my stomach from the pain. I was at work and considered telling my supervisor I was going home, but stayed. My doc asked what I used for the pain and I told her Tylenol Arthritis. Which is extended release Tylenol. 1300 mg -- 2 650mg tablets. And they didn't help. She is going to prescribe Tramadol for me. She said to try it and keep her informed.
I told her I thought of myself as a strong person and I hate taking meds. She told me it is expected for me to have pain and need medical intervention. And it was ok.
I was touched by that. It validated for me that it is ok, that I am not a wimp or drug seeker. I am a cancer patient and may need pain meds.
Do any of you ever have that "Ahh Haa" moment?
I am going to pick up the script Monday and we will see....
0 -
candy-678, I hope tramadol will work for you. I tried it earlier this year, one tablet broken in half over two nights. It didn't do anything for my pain, nor could I sleep, but everyone is different and it may be just what you need. The main reason I'm responding about it is to let you know that it also led to severe, painful constipation for me, in only one tablet. I'm not prone to C at all and I was drinking lots of water, etc. I had a miserable few days. So, you may want to prepare ahead of time with whatever remedies work with your system. If I have to try it again, I think I'll start a softener or something mild a day or two ahead. Many people take this and get relief and I hope it will help you a lot.
0 -
Candy I went through something similar with pain meds when tumor got tangled in brachial nerves and the pain was excruciating. I absolutely hated the idea of being on heavy pain meds because like you I thought I thought I was strong enough to tough it out, but everyone convinced me that if my mind is focused on the pain I can't heal, and by relieving the pain my body and mind can focus entirely on healing. It made sense to me, and it was true that once my meds were enough to relieve the pain it was so much easier to focus on getting better. I got off the pain meds as soon as I didn't need them anymore because I really don't like the brain fog they can cause, but now I won't hesitate to use them as needed in the future.
0 -
so I got my scan results back (not just the word from my MO who told me I am stable). I think I am feeling a teeny bit disheartened that the scans are showing that I am showing some spinal degeneration/stenosis, and some issues with discs that are new since a year ago.
The results read:
BONES: There are extensive diffuse sclerotic skeletal lesions involving the axial and appendicular skeleton which overall appear slightly increased in size throughout compared to 10/2/2017. This is most pronounced in the pelvis, with confluent sclerotic lesions noted, left greater than right. There is mild degenerative change in the spine. A Schmorl's node involving the superior T3 endplate is similar in appearance. L4/L5 disc protrusion with central spinal stenosis. Prominent disc osteophyte complex at T8/T9.
I know this is NOT that bad all things considering but I am feeling some sadness around my body changing from this whole darn thing. I am one of those folks who has always taken good care of myself through nutrition, exercise etc...
I think it just worries me that it only goes downhill from here???
0 -
Candy...I was prescribed Tramadol for pain in my left lower rib, before I was diagnosed with mets. My PCP diagnosed it as probable arthritic pain until CT scan showed differently. I will say it eased my pain, but didn't take it away totally. It made me sleep...a lot! I hope it works for you.
Hope
0 -
LovefromPhilly, how do you feel physically? If you feel good, then that will help you put the clinical write up in perspective as another data point, not the be all, end all. But, yeah, it's hard to read and/or feel a decline. Continue with the self-care, it will pay you dividends throughout this journey.
0 -
Wow.. this thread moves so fast. Just caught up on the last ten days or so. Several votes for a new mattress or mattress topper. Our mattress is relatively new and a good one, but the Costco mattress topper sounds like a good idea. I also had fluid in my lungs after chemo. I had one of those wedge things - like a foam wedge - that elevates you. I slept on my back up against it for at least a year...I think I still have it in a closet somewhere. (just in case.)
On the subject of pain; I was in horrible pain for about six months before my Stage IV diagnosis. I was also totally in denial...I should have known it was mets, but chose to believe it was a sports injury. The pain in my lower back was unreal...when diagnosed I learned I had several compressed vertebra. I can't take drugs like Tramadol, Vicodin, etc... I get totally sick to my stomach, so they put me on a low dose of Methodone, and I have been on it every since. Besides the pain and arthritis in my shoulders, it seems to do the trick. I have often thought I should wean myself off of it and see what happens.... but my MO discourages me from doing that.
Philly - I know how discouraging reports like that can be. You can't tell by just looking at me, but I have scholiosis from my untreated mets… I lost over an inch in height. When I look at my bone scans I already feel like I am looking at a little 90 year old lady....so I worry about what I will be like down the road (assuming there is a "down the road". ) It's one of the reasons I know I should do yoga ( I talk about that all the time on the Fitness Thread) I have been told over and over it's the best thing for my entire body frame. I didn't understand a lot of the terminology in your report, but they can just be scary, period.
XO
Andi
0 -
hi Jaylea and Andi! Thanks for responding! I feel pretty darn good all things considered. Some aches and pains here and there and things seem to come and go. I will take the scan report and data only and just stay tuned into how I feel - and not freak out lol!
I also get sick to my stomach with opioid medications unfortunately. I haven’t been prescribed any yet but I told them that I am allergic to hydrocodeine - that it makes me vomit.
So far for the pain, I have alternated Tylenol and Advil.
Holding off the big guns for when I REALLY am in need of them.
Happy Monday everyone!!!!
((((((((((((((((Hugs!))))))))))))
0 -
Hello all,
Wanted to say reading your posts here are helping others out here. A relative was recently diagnosed with Mets, 1 spot in bone. I've not been coping too well myself.
0 -
Thinking of everyone....
Please send me your good vibes tomorrow as I am getting another MRI check on my L-spine after CyberKnife treatment in August. My f/u PET was clear in October, but MRI also in October showed a significant increase in size of L4 lesion in one dimension....rad onc is thinking it could be post radiation effect, but wanted another MRI to reevaluate....so tomorrow will be one month since last scan. Still on Verzenio, Zometa, and Faslodex. I do not like the shots, but I feel better on Faslodex instead of anastrozole for sure! Still have GI side effects w/ Verzenio and getting scoped from mouth to a- - next week -LOL. Take care everyone..
0 -
good luck Chemokaze... hope the radiation did the trick to your spine...
I had my radiation treatment on Monday to my middle back (L1) ... and yesterday I had a terrible pain flare on my lower back. They gave me steroids, feeling somewhat better today...
Take care everyone...
0 -
oh thank u Utopia! I’m glad you’re doing better, but so sorry about that pain. I am very grateful that I have no back pain - never did even before CyberKnife. I received 3 treatments...keeping everything crossed that the area has settled down now. I have to keep reminding myself that I just had a clear PET scan. Happy Thanksgiving
0 -
girls I miss 1 week and have heaps of reading to do, I too had severe pain in my ribs for 6 months travelled to Paris New York and the Caribbean in horrible pain came back to Australia self diagnosed myself with costocondritus and only after a CT and bone scan were extensive mets diagnosed. Last year I got put on Fermara Endone and Targin which has been a life saver for me pain wise, I can only work 15 hours per week from 38 as my back just aches from pain and I get exhausted. I now nap 2-3 hours per day and have definitely gone downhill from last year. Fermara failed me after 18 months and the last 6 months I have been on medical marijuana and 2 other drugs which have failed. Atm I am on painkillers and just medical marijuana
A quick question hasanyone else had slight numbness and or tingling that comes and goes on one side of the lips and down to the chin? When I google it's just horrible
0 -
Yes, delvzy...I get the periodic numbness on the left side of my face, too. It comes and goes. Probably has to do w/my 20+ brain mets. Mine goes up into my nose, too. I hate it.
L
0 -
Lita - can I just say I’m a relative newbie here and I find your vibe and your no non sense tell it as it is attitude so inspiring and amazing. I hope to be like you oneday...hugs and prayers to you...
Chemokazee - congrats on NED! Very happy for you... my back has settled down after a steroid was prescribed... I’m travelling to California next week and doc gave me the blessing to do so... oh yeah he said have some weed there while u can, you’ll feel better!
0 -
Lita I have just had my 8 month CT scans and bone scans are all clear and stable st it's a bit of a mystery, I do have low hemoglobin so perhaps its that, U also amaze me with your good att
0 -
Hi all,
and a very big kiss to all of you - you are my heroes! I am here because of my mom, who has been diagnosed and treated 2 years ago for breast cancer. It was quite a big tumor. Now since two weeks, she has a pain in the whole leg - she describes the pain like its very deep in the bones and we are afraid of a metastasis. She had X-rays that did not show anything - her orthopedic said there is no way of being metastasis but her oncologist told her to have a bone scan.
I wanted to ask you how this pain feels? Unfortunately my mom doesnt speak English - i know that this forum would be such a great help and support for her.
Best,
Alex
0 -
Hi Piterpan,
It would be worth check out this other forum too because many people have asked the same question and you'll be able to see the variety of experiences both from people with bone mets and and from people who've been concerned they may have bone mets. I can share from keeping an eye out on that forum that the answer to what does it feel like ranges from people reporting never feeling any pain to others feeling a deep ache. If it's the whole leg, I might think it's more nerve related but I'm certainly not a doctor. My oncologist has a general rule that if I have a new pain that lasts more than 2 weeks, we will either do a CT scan or a bone scan. Xrays aren't great for detecting bone mets, generally (although they have caught them for some people).
If her pain has been ongoing, I'd suggest considering doing the bone scan as her oncologist suggested just to be thorough. A whole body scan can identify if there's an cancer metastitis in the spine or anywhere in the hips or leg that could be creating this pain. I wish you both well!
PS - just in case the link didn't embed correctly, the forum I was suggesting is called:
Topic: If you are not Stage IV but have questions, you may post here
0 -
Piterpan,
Don't want to scare you but mets wont show up on an X-ray and the orthopedist had no business saying it couldn't be. When all this started for me, I had horrible back pain which got to the point that I could barely walk. They did an X ray and diagnosed me with a colapsed disk. What the X ray didn't show was the large tumor pressing on it, found that on MRI.
I could absolutly be nothing to worry about, but to say there is no way? That's terrible.
0 -
Piterpan,
The bone scan is a much better test than X-ray as others have noted. Hoping they can find the cause and alleviate your mom’s pain!
These forums have been a great help at knowing what questions to ask the doctors
Happy Thanksgiving “bone buddies”!
0 -
Hi all!! Just wanted to pop in and wish you all a fantastic Thanksgiving Holiday!! I am graciously thankful for all of you wonderful ladies!! My MO took me off of the Letrozole 13 days ago because it was making me feel awful! Since then I have felt like myself again even with being on the Ibrance and I have cherished every moment of it. I have had energy again and I love it!! OnThanksgiving morning I will start on Aromasin and I am super anxious about it as I don't want to start feeling crappy again. Here's to crossing my fingers and praying that it goes as well as can be expected. Much love and hugs to you all!
0 -
Happy Thanksgiving to all of you. So grateful for these boards and all of you sharing. It's a safe place and a learning center for me. I had a chest X-ray this week. Bronchitis turning to pneumonia but ok now. Relieved it wasn't those nasty other cells visiting the lung or anything else. My mind takes me to dark places immediately. I've got to work on that
) Cancelled herceptin so I'm off this week. no scans for a while. ..hoping to skip it until after Christmas. Maire0 -
This group is awesome. I hope the other stage threads drop in to see what encouragement and strength is here to help them on their path to wellness. Hugs and Happy Thanksgiving to all.
0 -
Maire, glad your pneumonia is okay. One of my dear church friends ended up w/pneumonia, had to go to hospital, and it turned into blasted MRSA. She's in her early 80's, so I imagine that doesn't really help as one's immunity isn't what it was when one was in their 50's and 60's, let alone their 30's and 40's.
Best of luck to you!
L
0 -
Hello All...
I haven't been posting much but always check in with you all. As mentioned by many, this amazing group is a source of wisdom, support and even survival for me.
I suggested our group to a new MBC woman I just met. She is one who does not want to know anything about her condition. I cannot fathom winging this situation without the love and support of this group.
Thank you to all who are so generous of their time and wisdom to share with us all here. You have given me role models for me to aspire to. I have a long way to go...
With much love and gratitude,
Gumdoctor
0 -
in an effort to post and contribute more, I am back.
One of my struggles since MBC dx is "Who am I now?".
I have not told you all before...I am a periodontist and Colonel in the US Army.
I have done 13 years of college and still paying back $346,000 in student loans (the remainder may be going away soon). I was in the Navy as a general dentist then had my own perio practice for 9 years then joined the Army. Have been Army for nearly 13 years now. But the point is, I have spent my whole life working so very hard and getting to where I am. I have been responsible for gigantic projects and many people in my career. I chose my career over children many years ago. We live with our choices...
The Army missed my bilateral stage 3 BC for more than 3.5 years before July 2014 dx. After bilat mastectomies, chemo, massive radiation (just like so many of us here...), I did not make it 2 years before mets showed up in L4.
I am still active duty but officially in the sick and dying battalion (Warrior Transition Battlion). They pay me to sit at home and be a patient. I get my paycheck but they will not let me work for now. It is not as good as it sounds. For instance, I am the next on their list to die so they are planning my memorial ceremony already. Lots more really bad things but enough about that for now...
The Who Am I Now question comes up every day. And I do not have any clear answers yet. I am re-inventing myself every day, every hour, every minute. Some days this goes well and some days it does not.
The hardest hardest hardest part of all...I have been a very high level patient safety officer in the Army. While I focused on dental patient safety, I worked closely with medical PS colleagues. I am very familiar with how things should be and how they should not be. I no longer spend time fighting/mitigating the amazing malpractice that goes on every day. And oh by the way, I am slowing dying as a result of the Army's amazing, unfathomable negligence. I worked 18-20 hr days for years to do everything I could to protect our dental patients from preventable errors. And now...I will likely die as a result of this very thing. Army Medical did not follow the standard of care AT ALL. They have killed me.
Most civilians I talk to do not realize that active duty military members CANNOT SUE the government for malpractice.
This reality, in my case, is by far the hardest part of this whole thing for me. I spend half my time being enraged at the Army's incompetence and lack of accountability for my preventable death. The other half of my time I spend wondering who am I now that I no longer help patients or fight malpractice or help junior military staff and civilian staff maneuver the broken system called Army healthcare.
Sorry for this very long post. But I have been holding all this in since I joined you all here in our reluctant MBC sisterhood. I struggle. Alot.
You all have given me role models and some hope of having a decent remaining life in spite of how I got here.
Gumdoctor
0
