Bone Mets Thread
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Mainly popping in to say hi and try to offer a bit of hope to the many newbies I see here. In 3 months I will hit 10 years from diagnosis of mbc. I don't post often because I live a mostly "normal" life. I was browsing because of new hip, butt cheek, and leg pain. I Dr. at a large university hospital. I did want to give input on recent conversations. I have bone scans every 6 mos. The onc does not give them a lot of weight. She says, Mets to bones only won't kill you, spread to organs or marrow will. So she watches CT and labs every 3 mos more closely. If I have new pains that last more than 2 weeks I am to contact and then sooner tests and scans are ordered. I did also want to give input on bone treatment , zometa. Someone (TY) posted an informative article. Unfortunately because of my long term survival I did end up over treated and have a severe case of osteonecrosis. I am heading for my 5th surgery as a result. That said I am still here almost a decade later and it is so worth it. I would take the treatment and go through it all again. My input is no invasive dental work, spread out treatments once you hit year three, and if you have jaw and or tooth pain tell doctor immediately. I wish you all successful long term treatments with gentle side effects. #stillhere. #notthatday. are my tag lines. I expect to use them for at least another decade.
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Mirryp, yours is a wonderful and inspiring story. Thanks for sharing
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Hi,
I am age 34. I had multiple lumps in my left breast since childhood and was continuing a yearly scan since 2017 which shown them stable and benign, tbe lumps were non painful. Married in 2011 I have total of 3 kids. In March 2019 I was blessed with a baby girl (my 3rd kid). In January 2020 During feeding my kid, i felt bleeding from left breast. I went to breast clinic who saw my history and performed a surgery to remove lumps. Histopath of removed ducts and lumps was conducted and showed B2 Bengin. During Covid I could'nt visit Clinic for follow up. In Oct 2020 I visited clinic and told them that the breast has hardened , they told me its post operative changes.
On 27 January 2021, I again visited breast clinic, as there was a red rash with itching on Lt Breast. Doc said it was inflammatory breast cancer. My Biopsy showed a Grade 2 tumor with ER+ (100%) , PR+(63%) , HER2-ve (by FISH). Bone Scan Showed Mets in Right Hip joint and some Vertaberal Portion and 1 rib and Rt Shoulder. CT scan showed all vital organs clear.
I recieved my 1st dose of Hormone therapy Tamoxifin Pills and Zoladex 3.6mg on 8 Feb 2021. After bone Mets were confirmed thru Pet scan (T4b , cN1, cM1) , on 17 February, 2021 I have started Kisqali 600mg (3x200mg daily). I have taken time from Radiation Onco for Ovarian Ablation in some time.
I am 34 years old and 3 kids (Son age 7, Son Age 5 & Daughter age 2). My morale is high and I am committed to defeat this for my family.
Need prayers and Motivation
Regards
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Prayers2021, we're so sorry you had to find this group, but glad you did and decided to jump in and share you story. There's a lot of great information and wonderful people in this community always willing to share their wisdom and support, so hope that you will stay connected.
We love your positive attitude! We know how hard this can be, specially at the beginning.
Hope your treatment works well and is kind to you. Sending loads of hugs to you!
The Mods
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Moth, please update here how your meeting with MO went. Good luck with rad on tiny met in your T11, My T12 (close to T11) got radiated with limited se as L1, encouragement?!! Sorry I didn’t mean downgrade tradition rad.
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Prayers, I'm sorry you've had to join us here, but welcome. Before I was diagnosed I had no idea how many young people get breast cancer. Too many! It's good that you've started treatment though - I hope it goes well for you. Best wishes. 💕
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Prayers2021 - Sorry you are here but I think you will find a lot of knowledge and support here. I will say some prayers for you and your family. There is also a cancer novena on this site that I can direct you to the thread if you are interested.
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Thanks a lot Mods, ButtonsMachine and Cowgal.
Your kind words mean a lot for me and my family.
I am Alhamdulillah a Muslim and believe in God's Help in treatment of all type of diseases. God will help us all , He will inshaAllah give us strength to defeat this difficult times. I am a firm believer and say my prayers to God regularly, thats why even in young age and De Novo in Stage 4, I am calm. It was God's will to test me with this disease and inshaAllah I will fulfill His test with patience and Resolve.
Best wishes to all Fighters
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Snow-drop, oh not at all! I didn't mind what you said at all; I might be bringing my own angst to it as I'm still ticked that they won't do SABR here as they feel the evidence is not there yet... I had traditional rads to my lung in Dec, and I'm sure these to my spine will be just as good. My RO is a super keener & is willing to be very aggressive with treating oligoprogressions and trying to kill the mets rather than just reduce symptoms so I appreciate him for that.
& duh, I didn't get the actual bone met dimensions because I got totally distracted talking about Xgeva v. Zometa and then further distracted by my lung mets & mutually deciding on a chest xray as my breathing has been a bit wonky. I used to get all my reports and read them over (& still recommend that to others) but this time around I'm more content to just get the gist. "tiny" "really very small" and "I can treat it" is good enough for me.
Hi Prayers, sorry you're joining us here but welcome. I hope your treatment starts working very quickly. So glad it's not spread to organs - that's a very good thing.
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prayers, sorry for your diagnosis, Stay positive. Hugs
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Hi Prayers,
I’m also sorry for your diagnosis. It’s unfair that any of us have to deal with this but particularly unfair for someone like yourself, young with children. You’ll find good support here.
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Prayers, You are fortunate to have your faith and your young family lifting you up, this diagnosis is definitely not for the weak!! The initial steps are the same for most of us, but then the path varies a lot- to get the best result, plan to get into the clinical trials world sooner than later, and be aware some trials exclude more than one or two chemos in the metastatic setting. Do not hesitate to get second opinions when changing drugs, this is what second opinions were invented for! and MOs working at major centers with clinical trials can steer you in directions that a standard MO would have no idea about...Best of luck!!
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Hi Everyone,
Thanks for posting. I'm unable to keep up with all the messages, for now. But I wish all the new people here much love. (I was diagnosed just a few weeks ago also.)
I found this page and it was very good to read it: On this website, under Home > Symptoms and Diagnosis > Types of Breast Cancer > Metastatic Breast Cancer > Blog >
"16 People Living With Metastatic Breast Cancer Share Advice for the Newly Diagnosed"... and it was encouraging. (I don't know what to do with myself. Don't know what to think etc.) It was very nice to read those stories, and know that for some the first year is difficult in adapting to the new normal, but good things can still happen.
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Hi Moth, Hopfull2, Sadiesservant, Cute00, Cure-ious . Thanks a lot for your kind and encouraging words. I will keep in touch here.
Cure-ious dear I will keep your advices in mind. Its just my 3rd day with Targetted Therapy (Kisqali) . I am hopefull that God will eradicate this disease for me and you all.
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Prayers, sending hugs and much encouragement-
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Hi Ladies,
I just joined this forum yesterday to see if there are any ladies out there that could refer me to a great plastic surgeon in my are for lat breast reconstruction. I came across this post by chance. I just want to say, my heart goes out to every single of you, your all so strong and so brave. I will keep you all in my prayers. Sending all of you lots of ❤ and positive energy, my lovely heroe's.
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Prayers and any others I may have missed, welcome to the club nobody wants to be in! Stick around, there is so much information on this site and so many helpful people
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To any of you who have diffuse mets in your spine and hip area -- does your back ever spasm? I am having a heckuva time dealing with back pain and back spasm over the last several days. I am currently on immunotherapy (keytruda) and started with what felt like arthritic pain across my lower back last Friday afternoon. It's been bothering me ever since, in different degrees, and today, after taking a hot shower, my back started spasming. It took a little while to stop, but man, was it painful.
In my mind, I'm just trying to sort out if this is related to the mets or related to the keytruda. And yes, I have contacted my MO. Not that helpful, frankly -- just prescribed tramadol every 4 hours (not my idea of a good solution). So I'm using heat wraps and taking Advil or Tylenol arthritis.
Thanks for any insights.
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BevJen, my back aches almost constantly. Not enough to want to take anything for it, except for Tylenol PM at night. Sometimes a warm shower at night helps.
What I've noticed is the difficulty dressing - especially getting socks on my left foot. I've had to ask my husband to help a few times.
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BevJen, my experience of the pain related to bone Mets-growing is different, basically the location of pain doesn’t change (unlike disk/ nerve/ sciatica pain) and the level of pain is getting greater by time. Do you have other symptoms like numbness etc? Do you feel the pain/ weakness in your legs for example? When you rest do you still feel pain? Oncologists/ neuro oncologists always prescribe strong pain killers nothing more, which in my view is not a solution, I understand your point. I would push for a mri of pelvic + lumbar spine for assurance. I hope you get better soon.
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Hi, Snow-drop,
Thanks for the info about your situation. It's helpful to hear what others have to say.
No, no other symptoms or pain or weakness. I've just started keytruda, though, and that's why I was asking what people who were not on that were experiencing -- so as to distinguish "regular" bone mets pain from something that might have been brought on by the keytruda.
I won't scan for a bit -- had a nuclear bone scan in early Jan. and CT in December, and so I think I will wait for a bit. I have to have an MRI of my abdomen in late April for my interventional radiologist, so I think that will be my next scan.
To be continued....
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BevJen- have you tried Yoga, stretches, foam rolling esp of glutes? I would be crippled without yoga, I realize people roll their eyes at this, but, a lifesaver for me. When my back spasms the glutes are often tight and pulling on the back hence the foam rolling.
I don't know anything about Keytruda, however.
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Nkb,
No, have not tried either yoga or foam rolling. Not easy to do either this week -- in too much pain to even manipulate my body into a position where I could do either. If this eases up, I might try that. Right now just trying to muster enough strength and little enough pain that I can walk to the bathroom. Planted in my recliner too much, perhaps, but I don't really take well to pain. Thanks for the suggestions.
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Hi ladies. ,, I dot get the actual back spasm , but do get back pain , not enough to have to take pain meds anymore though, but I notice it’s more I’m morning , probably due to me just waking up , laying in bed for hours. I do have knee pain. Due to my bone in knee is worn out due to the Mets. Hard for me to go up stairs. I try not to. Glad my house is a one story. This whole things just awful. I’m fairly young (41). My husband and I wanted to buy a new home. Our dream home , I always thought of a nice big 2 story, that’s out the window. So if we move it will b to another one story, so not sure if it’s even worth selling n buying another one story. My husband use to have to help me w my shoes to, when I first found out I got really sick, couldn’t even walk. I’m better now just can’t do stairs. This decease is ugly. Hug
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I have a question: Do any of you use a cane or a walking stick when you're out and about? My OO recommended walking sticks, but my PT friend said a cane might be more appropriate. I bought the walking sticks, but only used them a few times. I felt funny walking down the sidewalk with them.
Today the cane I ordered arrived. It's the offset Hurrycane with the tri-tip feet. I haven't mastered the art of walking with a cane yet.
The reason I want a cane sometimes, is that when I'm walking by myself, it lets people know that I'm "fragile" (for want of a better word).
What do you all think of this idea? My mets are in my spine, hip, femur and ribs. I don't really have any balance problems, but I feel steadier when I'm holding my husband's hand when we're walking at night. Do you think the cane/walking stick would make me feel more secure when I'm walking by myself?
I don't like the idea of looking like an invalid or an "old lady". I have a neighbor with MS who walks with a cane. She's beautiful and classy and she doesn't look like an invalid. I broke my back when I was 12 and the doctor wanted me to use a cane. I refused. I didn't want to look like a "cripple". I just don't know what to do...
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BevJen- sometimes the recliner is the best place. I have had the kind of spasm that I can't really move any which way for awhile. Hopefully it will let go and you can be more mobile soon.
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Sorry Sunshine, I can’t really comment. At 58 I am still walking pretty well, thank goodness as Sadie needs the exercise! No canes yet but must admit that I love my mother’s handicap parking sign when I take her to appointments. Never use it when unnecessary of course but today I had to take her to an appointment at the hospital and without it we would have been doomed in terms of parking! LOL
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BevJen - When I had extremely painful lower back spasms, the only thing that helped significantly was a muscle relaxant (felxeril). Heat, Advil, and resting on my back with my knees bent over a triangle pillow (like they use during scans) helped. Icing only made my back spasm more. I feel your pain -- I couldn't even get out of bed to go to the bathroom. If it's not related to spine mets, then I think it should improve within 3 days or so. I also wore a back brace for a week after to support my back.
Hugs and very best wishes! Theresa
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BevJen, just wanted to chime in that I have a twitch here and there but not the back spasms you’re describing. I have a lot of pain in my lower hip area and all across the low back but it doesn’t spasm often.
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