Bone Mets Thread
Comments
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Emac,
Wonderful news, Emac. Yay for stable! I had a report of this Schmorl's nodes on my last MRI too -- from what I understand, they are simply another thing that reflects degenerative disease in the spine. I took it as something not to worry about.
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Emac...great news!
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EMAC awesome!!!
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That's got to be a great relief emac!
I saw my images from my bone scan for the first time yesterday. It's pretty fascinating to see the yellow spot glow. She said the ribs bones are so small it doesn't capture as well but I saw some in the spine. She still is questioning my right hip as to degenerative disease like arthritis or truly mets. Right now we are focusing on the liver, labs for liver enzymes are finally looking pretty good.
I've been in more pain this week than the past 4 rounds, wonder if the Zometa combined with the chemo is causing inflammation. Lots going on in there!!
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Hi Nicole,
I saw your comments on the liver thread re: radiation to C7 and wanted to reach out as I've just gone through a similar decision process. I don't like to intrude on the liver thread as thankfully mine is still clear.
Last year I had trouble with some numbness and tingling in my right arm. CT scans revealed that I have extensive mets in my C-spine and the base of my skull. Apparently they don't typically scan here as it's unusual to have mets there and bone scans aren't that effective for me. At the time I was experiencing some issues with numbness on the right side of my face but ultimately decided it was not severe enough to justify the risk of radiation.
Not sure if you read my earlier post but in July I started experiencing low grade headaches which became progressively worse. This evolved to pain a the back of my head and neck making it hard for me to sustain computer work in my job. By September the headaches were daily and over the top. The brain MRI came back clear and there is no evidence of progression but my MO feels clinically there is likely some small progression in the boney mets that are pressing on nerves. He referred me back to my RO and put me on dexamethazone (steroid) which took care of the headaches but led to a whole host of other issues... particularly insomnia. Unfortunately, once I started to taper off the drug the headaches and neck/head pain have returned. It seems clear that something is going on and I can no longer put off the decision to treat.
I met with my RO last week and will be having five rounds of radiation to the C-spine and skull base starting on November 3rd. (Planning session was yesterday where they made the mask to hold my head steady. Kind of a neat process - plastic has revolutionized medical care!) I have to admit that am quite nervous as the list of potential and likely side effects is long and daunting. It's such a delicate area to radiate that I would not choose this path lightly. However, I can't go through life with pounding headaches either. Hopefully I won't have many negative impacts - they have to tell you about everything but fingers crossed it won't be as bad as all that. I do expect the sore throat and fatigue but the rest is uncertain.
My question for you Nicole, have your docs indicated that there is concern with the mets at C7? I know there is a chance that things could progress but I anticipate you would have some warning if things start going sideways. In my case, it's been a year and the change was obvious once it started to present itself. Unless there is some significant instability in the bone I think you would have a similar warning. Perhaps you can ask your MO? Radiation will also weaken the bone so if fracture is of concern that might need to be considered.
Anyway, all to say I totally understand the challenge of making decisions about these types of treatments. It's really tough to know if I am doing the right thing or not but...
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Emac - awesome news!
I had to look up a Schmorl's node - apparently they will show uptake on bone scans and can be difficult at first to differentiate from mets. And its like a herniated disk that goes downward rather than into the canal. Well, guess you learn something new every day.
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Sadie...I am crying reading your post.
. Partly because I feel so bad about what you are going through and the hard decisions we have to make but also because I feel so understood and validated.So my MO was very concerned about the location and wanted me to consult with the RO. So I did (this was back last week of July/ first week of August) he asked if I had pain there...I said no... (I do now however have some pain if I tilt head ALL THE WAY BACK chin up to ceiling.) He expressed concern..but felt that if there is no pain or issues right now that we should leave it until there is. I also consulted with a Neurosurgeon (on my on accord not recommended by MO) he really does not treat cancer patients...he almost sounded like "its a waste of time since we are stage 4 anyway" but didn't actually say those words of course....but he does surgery not radiation.
So what are your thoughts?
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Hi Nicole,
If it was me... I would keep an eye on it for now. I wouldn't do anything to aggravate things (like hyperextending your neck) as that can contribute to inflammation and complicate the plot. However, I totally understand that this is a bit nerve wracking as well. Perhaps let your MO that you prefer a wait and see approach (quite frankly... you have enough going on!) and ask your MO if there are any symptoms that you should specifically watch out for. I'm not an expert by any stretch but do think you will notice changes if things worsen.
I hope this is helpful. It's never easy!
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Oh... and non cancer professionals just don't get it. It's sad but true. When I was first diagnosed as stage IV the respirologist first scoffed at the idea that my lung full of fluid could be breast cancer (I had a long time between my stage 2a diagnosis and stage IV) and then, when it was confirmed at BC, told me they would probably put me on chemo. I suggested they would likely want to scan me first to see where it has spread. His response? "Why"... seriously???
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Sadie...yes my MO knows the RO had said lets wait and see and she said ok to that. He said to let him know if I develop and changes like tingling or numbness. I have a telemedicine consult with him again (and I am not crazy about him, but he does have good reviews
. ) I have that next week. They will MRI the Cervical on Tuesday I consult with him a week from tomorrow. All my other scans PET and MRI abdomen are tomorrow.0 -
Hi guys. Ever since I had the Zometa infusion 2 weeks ago and started chemo last week, I’ve been in some sort of pain everyday. Most is mild and tolerable end it changes every day, sometimes it’s in the ribs, sometimes the spine. But last night I woke up at four in the morning with my hips & legs hurting. It’s such a deep ache. I took ibuprofen for the first time end it took the pain away. I took 2 more this afternoon, almost 12 hours later. I woke up tonight at almost midnight, with our both hip joints aching even when I’m not moving. I took a naproxen 40 minutes ago and it still has not kicked in. Is it usual to be in pain and discomfort the first chemo after the bone infusion? I did not have these side effects the last three rounds.
Also what’s the most effective pain reliever? These pains feel so deep
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pamela take Claritin from now on a few days before infusion and a few after.
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sadie how would you define tingling for arms and legs?....I get what feels like chills is that it or would it be more like pins...needles?? I have not gotten numbness...
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Nicole,
The numbness was pretty obvious. In my face it feels like I’ve been to the dentist and there is still freezing. The numbness in my arm, which turned out to be due to degenerative damage, was a case of my arm going to sleep and then the pins of needles of the circulation coming back.
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Sadie, problem is...if I feel pins and needles in my feet not arms or legs ..how do I know if its from C7 or the beginning of Neuropathy from my chemo..(which is the #1 side effect) and I am just starting to feel a little of that...
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Sounds like neuropathy from chemo Nicole. It's unlikely that issues with your c-spine would materialize in the legs/feet. I've had issues with my legs but they were due to mets in my lumbar spine and hip which caused sciatica.
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A dermatome chart will show you what is impacted by impingement or degradation of vertebrae - for C7 it is back of the arms and then around to your index and middle fingers. (Just search for dermatome chart on google images)
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Thanks you Sadie and Sondra
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Sondra,
Thanks for posting that info about the dermatome chart. Wow. Never heard of that. Great info to have.
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Ditto the thanks on the Dermatome Charts. Very interesting!
Edited to add: I have mets to my ribs, spine, hip and femur. The spine mets are around L4 and L5. I've been having increased pain to the tops of my thighs. It's getting harder and harder to get clothes on my lower extremities and squatting down is almost impossible. I can get onto the floor if I need to pick something up, get clothes out of the drier, etc., but it's really difficult and I have to have something to pull myself back to a standing position.
I've been using an under desk elliptical machine and I'm still walking each day. Has anyone else experienced this type of pain? Is it mets related or just weakness in my muscles? I see my MO in a couple of weeks, but just thought I'd throw out the question here.
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Sunshine- Just a thought, but maybe the achiness of Arimidex use. Aromatase inhibitors (Arimidex, and Letrozole that I am on) cause joint achiness. When I get down on the floor I have to get on all 4's and hold something to help myself get up. I think a lot of symptoms we blame on the cancer, but really it is the side effects of the cancer meds. Of course, talk to your MO.
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Candy - I agree. These AI’s definitely cause aches and pains and it’s difficult to determine what’s a SE vs what is cancer pain or an aging body. My MO said the acute drop in estrogen produced by aromatase inhibition is the most likely cause of my joint pains. Fortunately for me, I’m noticeably less achy in the Florida weather then in Wisconsin. For the most part once I start moving I’m ok but jeez, getting up after sitting awhile is comical. Or getting up off the floor. Between the neuropathy in my feet and joint pain and a family history of osteoarthritis, I move like someone decades older.
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Good advice. I hadn’t thought about the AIs. I’ll check with my MO and see what she thinks.
Thanks!
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Nicole, I’m going to try to Clarendon before the next infusion in a couple weeks. I was down two days after the infusion, but then there was another five days before I started the round of chemo that started this intermittent pain. I was just wondering if it was an affect of the two combined. I didn’t feel my bones at all until this week.
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Java, I'm having Zometa infusion to strengthen the bones. I just read on OnkLink that the side effects of joint/bone pain can last from 1 day to months. Lucky me, LOL. Makes me feel better.
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I AM RESPONDING TO TREATMENT!!!!!!! MY GOSH I AM SOBBING JUST SAYING THOSE WORDS HERE FOR THE FIRST TIME IN OVER A YEAR and HALF!!!!
All the tumors in liver have shrunk the biggest (and oldest one) went from 4.0 to 2.6!!! The next when from 2.0 x 1.2 cm to 1.5 x 1.0cm but then the newest but smallest almost looks like it grew (which makes me nervous but she is not concerned) bc it went from 1.1. x 0.9cm went to 1.2cm x 1.0 then they said about that : "not significant changed" .....but that makes me think the cancer is mutating (since that is the newest one and it grew)....
Anyway..I meet with the IR Thursday to discuss the Y90. MY MO said IF the IR gets the 3 tumors via Y90...that would mean essentially that my liver is NED...she feels comfortable giving Endocrine Therapy another try. I am just praying the IR can get a big enough sample for Tempus of that newest (smallest) tumor.
it looks like the newest leision at C7 may have shrunk a little but I get MRI of that tomorrow...and the one in the sacrum still looks the same but she mentioned something about my bone marrow...that it was hard to see or something Bc of that...she said ITS NOT CANCER (with the marrow) its something that can happen when on chemo and not a big deal but that they didn't see a fracture there....so I am now wondering if that really bad pain I had there 2 weeks ago was die off (I will cross post in liver mets)
Thank you all for all your prayers ...I am hoping I can ride this for more than 1 month (unlike Ibrance, Letrozole Faslodex)
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Great news NicoleRed!! I just started Xeloda after 3 years on Ibrance and I hope to see a response too. Hope you continue to do well.
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Thanks Elenas! I am sure Xeloda will work well for you! Wow 3 years on Ibrance....I only got 3 months on Ibrance.
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Nicole! So happy to read this from you! Hope the local treatment goes well and the Xeloda keeps on shrinking what’s left.
Big hugs and happy dances for you xo
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Congratulations Nicole!! I am beyond happy for you. I feel when someone gets a victory, we all do. That's the gift of HOPE so thank you! I hope you can have time to have this sink in and treat yourself in some way, you deserve it!!!
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