Spinal mets question

[kpjpmom]

How many of you stage 4's has cc spread to the bone first before a major organ? I have met(s) to my spine. They think maybe one at present. How did your doctor address the met? Mine is at my tailbone and non operable. He plans to use radiation, and infusion once a month to strengthen the bones and said something about chemo. My bones are beginning to crumble in that area with arthiritis Just wondered what your doctor has you doing. I will have a PET scan done in 6-9 weeks to see if it is other parts of my bone. Is it unusual for CRC to go to the bone first? This is my second reoccurance. Thanks for the imput.
KPJPMOM

[momof3]

My husband has had bone mets since diagnosis. They've always been negative in biopsies, but proved those were false negs when his femur broke. He did have para aortic nodes also at diagnosis, but nothing in liver or lungs. He's only had chemo and that has resolved things but they seem to keep coming back after chemo stops. Waiting on results now from pet ct on Friday. It does seem to be pretty uncommon. He also gets shots of xgeva every 3 or 4 weeks for bone strengthening and takes 10000 Units of vit d daily.

[Redtexa5]

Our Kathryn Blume, Kathryn in MN, who we lost about a year ago had the same thing, spinal mets but no major organ involvement, she found relief from her spinal mets with the Star Ablation system from Define Inc. Here is a you tube video interview she did about the procedure and what she thought about it.
https://www.youtube.com/watch?v=jQqVNOUzGjc&list=PLbTgA4ZkZf3NhBwJXWg0DquZ7oAIE92Si&index=4.

Also here is a link to Dfine's website, http://www.dfineinc.com/ the manufacturer's of the system and you can go to the spinal tumors section of their website for more information. My understanding is if you can irradiate the tumor they can get to it with their system.

I don't know were you are located, but one of the best and most experienced surgeons with the system is here in Austin so if you can get here I am sure you will be in good hands.

Feel free to PM me etc if you need anything else this system really does wonders for pain relief from everything I have seen.

[iitg.ritesh]

yes, one of my friend was having bone met first. although onc told it is quite rare but yes it does happen.

[Cancerislame]

Hello, I have no experience with this. However, I was wondering what bone Mets feel like and how they are diagnosed. It's been four years since my dx and almost 3 yrs cancer free and a little over a year being off maintenance chemo. Since January I have been having extreme pain and bloating. But with that I feel like I have pain in my sternum and rib pain. I can't tell if that is from being bloated or what. I also have severe back and hip pain which is getting worse along with hand and wrist pain that are increasing. It might be the arthritis that I got from chemo but it worries me. I have an endo and a colonoscopy in two weeks so that is good. My last CT scan was in January and I eat a vegan diet so it's taken 4 drs you take me seriously.

[momof3]

Hello, I have no experience with this. However, I was wondering what bone Mets feel like and how they are diagnosed. It's been four years since my dx and almost 3 yrs cancer free and a little over a year being off maintenance chemo. Since January I have been having extreme pain and bloating. But with that I feel like I have pain in my sternum and rib pain. I can't tell if that is from being bloated or what. I also have severe back and hip pain which is getting worse along with hand and wrist pain that are increasing. It might be the arthritis that I got from chemo but it worries me. I have an endo and a colonoscopy in two weeks so that is good. My last CT scan was in January and I eat a vegan diet so it's taken 4 drs you take me seriously.

How has your cea been?
I would insist on a pet/ct. Not to scare you, but my husband had a clear pet/ct in August 2013. By sept he was having some back pain, but that isn't unusual for him. His Cea went up a little but still in normal range. In oct the pain was getting worse, he was hospitalized for a week. They did MRI, bone scans etc. Did see some lesions that they biopsied that came back negative. From oct thru mid nov, he could barely get out of bed and was using a walker and wheelchair. Mid nov he had a pet/ct. The next day he had a femur break. The radiology dept called the onc the day after the break to let them know there was an impending fracture..too late.

Hoping your pain is "just" arthritis, but don't them push you off, make sure you get answers and tests. Good luck!

[kpjpmom]

We absolutely know that I have spinal met. I have had a CT, bone biopsy of the sacral area. I have increasing pain each day and have started radiation for the pain. I have 15 treatments scheduled and have taken 3 already. My CEA is elevated at 237. Pain is the big indicator also. I just wondered if anyone here has by passed lung, liver and went straight to the bone. I see now from the responses that it can happen.
Thank you all for your sharing your stories with me.

[Cancerislame]

Hello Momofthree,

Thank you for your feedback. My CEA in January was 1.2. The first day I was dx my Cea was 16, but since the colon resection it's been low. So, I have never felt bit was a good indicator. My onc has me on a four month scanning schedule which will be in May. I will email her today with my concernmy and ask if it can be a pet / CT. I think answers will go a long way in making me feel better.