Bone Mets Thread
Comments
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wonderful news, Linda!! Enjoy the good feeling.
Caryn0 -
BethCon1 ... I have not experienced what you are talking about and hope your medical team gets to the bottom of it soon as I have found the not knowing worse than the knowing. I once knew of someone that had similar symptoms and it was related to pressure on the chest wall & artery from their mets. I would encourage you to keep the pressure on your medical team to get to the bottom of it; whether it be via scans or whatever. Good luck.
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I have the bone mets and my Vitamin D is really low.. 8.9 at the last blood test. My Oncologist has me taking 10,000mg of Vitamin twice a week. :-/0 -
Freedom you will find that most women who have BC are low in their Vit D I know I was and still struggle to get it to stay at the level that my doc wants it to be. Hopefully your dosage will get you there and keep you there.
Love n hugs. Chrissy0 -
Congrats Linda on your scan results!!0 -
Recently did a round of radiation to the painful parts. It did not take care of all the pain in my lower back. The radiologist is recommending a boost round of 5 more treatments. Of course she can not guarantee results, tho the previous 15 treatments did take care of the hip pain and I can walk like a normal human now.. I am still on the fence on whether to do the 5 boosters. Husband wants me to do it.. Just curious what you guys would do.0 -
Thanks Rosevalley, that's good to know because I don't want to feel like that again, but I will if it helps fight this beast!!!
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hi ladies. It's been a little bit since I've been on. I had my surgery and the steel rod was placed successfully in my femur. I'm two weeks out and still in pain and walking with a walker. I start radiation to my leg and back on Monday. I will have 13 rounds. Hope it goes well. I also found out my cancer changed from er/pr+ her2+ to er/pr+ her2-. With these results they said no chemo!!! I'm ecstatic! I will start arimidex and also have my ovaries removed. I kicked my oncologist to the curb and got a new one too! My old one did not believe in tumor markers or scans, so those of you going through that, I understand. This new doc is amazing and I feel safe in his care. I pray every day for all of my bco sisters. God bless!0 -
I do have a question.......it will seem really stupid and I didn't ask my oncologist. Because I have bone mets, am I now stage IV? I feel dumb asking0 -
Yes, it's my understanding that you're stage 4 now. I had extensive surgery last January--hip replacement, bone cement and a rod in my femur, and a metal plate around the top of the femur. It was hard at first, but after a lot of PT, the pain was much less and I get around pretty well. I usually don't even need the cane. It sounds like you're doing well. Best of luck.0 -
thanks Mary! Wow that sounds painful! I just had the rod, no hip joint involvement. I'm still using the walker and start PT on Tuesday. Hugs to you!0 -
Hi all. I've been absent a while - was on travel for two weeks for business and have been doing field work (soil sampling), so not much internet time of late.
Slgarcia. So glad the rod placement went well. I had my rod put in on Feb 10 and was on a walker/elbow crutches for a while. It hurt like hell for about 2 weeks. Once they took the staples out, it was better. I was lucky, no infection or any other issues, just some big slices hither and yon. The one in my behind hurt the most - literally a PIA. I was down to one crutch by the end of March and totally off crutches by the end of May. I have arthritis in my left knee and the surgery was on the left femur, so that slowed my recovery a bit - knee was too sore to do all the PT exercises. But I've gotten a cortisone shot in my knee and am able to walk and exercise more. I spent seven hours on my feet (in steel toed boots) doing field sampling yesterday. I'm a bit stiff and sore, but overall not too bad! What part of Omaha are you in? My mom lived in Millard for many years and I still have some friends in the area.
Rangermom - so sorry to hear of your challenges. Sending prayers and hugs your way.
Bethcon - sure hope they get your problem sorted soon!
Linda - great news with the scan results!
I'm still waiting for my CT scan and appointment with my MO. I'm doing well except having horrific muscle cramps in my legs (thighs and calves, and also down the outside of my leg above the ankle). Eating bananas and hoping that helps. But I'm doing well enough that I pulled enough weeds last weekend to fill up the wheelie bin, managed to do the field work I needed to do for work, did a bunch of shopping today, and got some great pictures of baby shags (birds). Bought a bunch of plants so now I have to get them into the garden. Spring planting - veggies and flowers!
Wishing all of you the best.
Terre0 -
Rangermom, hope you are doing ok and getting all fixed up so you can enjoy the arrival of your grand baby!0 -
sigarcia05 I had my left femur rod placed 9/25, the right on 5/07. Then I developed a fiery sciatica pain, had an MRI and we are now irradiating a sacral mass along with the left femur. I have a multitude of saints praying for me. I am learning just how fragile my body is. Will have to delay my return to work and will use that time trusting my Lord .
Anita0 -
You're in my thoughts Rangermom.0 -
I get Xgeva. Once a month.0 -
Mine was around 18. They have me on 50,000 units once a week AND 2,000 daily. Apparently there are many ways to dose vitamen D. I get retested again (for the first time) in 3 months.0 -
Rangermom,
I too want to add my thoughts and support. No sage advice but I am thinking of you and really hope they can do whatever needs doing right away so that you can spend time with that baby who is coming soon! - maybe even already here since it is already 11/3.0 -
Sigarcia05, Glad you are doing well, I had my rod placed in August, It is still uncomfortable at times. Try getting buy with advil but occ take hydrocone to sleep. Pt helps greatly so do it as long as you can. Best wishes to everyone.0 -
I had a bone scan and ct scan last week. I rang up the hospital for results and the registrar on duty told me that while I was stable and the cancer had not gone into my organs, my (fractured) t8 looked worse as it was probably being eaten away by the cancer but maybe it was healing (wtf???). Anyway he said no need to change treatment, but if i had any pain or tingling to come into the hospital as the spinal cord might be compromised. My back hurts but it has hurt from the get go and I asked him if putting in cement would hold the fracture but he said that it would be too hard on the rest of my vertebrae as there are mets everywhere and the spine is compressed. The impression I got was that there was nothing that could be done. So I'm sitting here wondering what should I do now? Basically I hate making a fuss yet I don't want to wait until something bad happens to my back. On the other hand surely they'd bring me into hospital if there was a likelihood that I was in danger of being paralysed. I don't know what to think. I'd appreciate any thoughts, advice ...0 -
Sometimes radiation can be done for back pain & to kill cancer cells too close to the spinal column. I just had this done for a recurrence of bone mets after being 4 years clean.
Terri0 -
Thanks, Terri. I've had radiation to my t4, also lumbar and cervical spine. It didn't get rid of pain though it has stabilised those mets I hope.0 -
I have several bone mets on my spine and pelvis and the T9 was fractured because of the largest met. The RO zapped it and it shrunk to at least half.-the pain was greatly decreased after about a month. I would make sure the radiologist knows that you are in pain. Don't be afraid to make a fuss about it. Ask for an MRI, it would give more detail.0 -
Aiobheann, please read my past posts. I had the same problem with my T8 (disc compression that was "eaten up". RO couldn't zap it due to numerous spine mets. I was referred to neurosurgeon who did emergency surgery as my entire spine was compromised. They ended up fusing discs T6-10. They (surgeons) needed to find bones that were moderately sound to put 8 screws, 2 rods and a cage to the eaten up T8. Like you, cement wasn't an option. After, the fusion surgery....I had 20 radiation treatments. I just finished rads last week and am slowly healing. I am very fatigued due to wide area radiated.
Please be very careful with the T8 fracture. You don't want to "spiral down" meaning - paralyzed 45 degrees bent forward or backward. That was the reason why my MO and RO referred me to a neurosurgeon right away. ((Hugs)) and I am here for you if you have any questions.0 -
Lynn1234, and Teen22, thank you so much for the information. I was thinking that it was crazy to take a 'wait for the tingling', or not, approach. I'm scared that my bones are too crumbly for fusion surgery or maybe they don't have the expertise to do that operation here {sigh}. I never heard of 'spiral down' - definitely want to avoid that! I'll try to contact my onc tomorrow, very difficult man to talk to. {{Hugs}}0 -
I too had that concern about my spine being too crumbly and weak for fusion....but the neurosurgeon will find the good bones to anchor to. My neurosurgeon (Chief of Jackson Memorial in Miami) has majority of his patients coming from all over the world ...yes, they are mostly flying in for this type surgery. They make all the necessary arrangements (travel/surgery) -if you are interested please let me know and I will hook you up. Check out and Google Dr. Allan Levi, he is the best there is.
I am here for you sis...hugs.0 -
Aoibheann, sometimes when they look at the images from bone scans or CTs it is almost impossible to tell if at spot is getting worse or trying to heal they tend to show the same signs. Anyway that is what the imaging radiologist told me after telling me that they could not tell if a spot on my L4 was getting worse or healing. Poor guy I almost went ballistic on him until DH calmed me down and ask him why could they not tell the difference. Gosh I love my DH he really is my handle on the world.
I just finished another round of rads on T12 to L4 to help with the pain and I have had the added benefit of getting some of the feeling back in my toes! RO and MO both said that the compression in that area was interfering with the nerves going to my feet. Now if they could stop the uncontrollable tremors of my right hand and what is causing this headache I have had sines Jan.!!!!!!
Joy & blessings, A J0 -
Violet_1 - Sorry for the delay in answering - just kind of busy with the Halloween, the weekend-end, having a cold, work craziness and life! Anyhow, my initial diagnosis in '07 came from a mammogram reading. Thank goodness the radiologist questioned the reading, as otherwise I'd have no idea. My tumor was very close to my chest wall. I had no symptoms and no family history, not that it makes a difference. The second go-around was discovered during my annual onc visit. I again had no symptoms, but the blood levels gave it away. The PET scan confirmed.
RangerMom - hugs still going out for you. I hope you are feeling better.0 -
Hi Teen22, I hope all is well with you. I had a look at Dr Levi on the net and he certainly is impressive. Thank you for your kind offer, I didn't know it was feasible to travel for this type of surgery and I will certainly keep it in my mind. I'd have to check out my health insurance first, though!
I wasn't able to speak to my onc today, his sec said that as I am 'in treatment' all records are kept in the hospital, I rang there and the same registrar spoke to me. He was annoyed and reiterated what he said re the cancer having eaten away my t8 and said he'd discuss my scans with the onc. I asked him what could be done about it and he said spinal surgery was v dangerous but maybe radiotherapy would help. He told me that I have multiple spots everywhere (which I know) and lots of small fractures all over (which I didn't know). Anyway he didn't ring me back. I guess I'm going to have to wait until the 19th when I have chemo and talk to the onc then.
AJ, I'm glad you have some pain relief and that feeling is returning to your toes after your radiotherapy. I hope they work out what is causing your headaches - it's awful that you've had them since Jan.
Take care {{Hugs}}0 -
I am so glad you spoke up. Now it's the waiting game-it's so hard to wait. Maybe you could get a consultation with the onc before the chemo?0
