Bone Mets Thread
Comments
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Rangermom, the insurance denial of your MRI claims could be due to improper coding. Ask the Doctor's office to resubmit the claims. Diagnosis has to match up just right or it gets denied. At least that's my experience as a medical coder.
As for the stupid comment of your ignorant coworker, it's hard to forget those things, try not to dwell on it. It sounds like you may need a break to think about things.0 -
Scuttlers,
Did you take the accelerated life insurance benefits? If so, were you hit with an income tax on this additional money?0 -
Hi,
I met with my MO yesterday and we had a great talk about possibilities. I showed her the information about Shands and she said the the SBRT is not new in fact the hospital I'm at does it. I am at a NYS University teaching hospital in Syracuse. She did think the proton therapy program was new, but I was told that I would not be a candidate for that. After speaking with Cathy Hartley the Patient Intake Coordinator I did get the message that you need to be in pretty good health, other than the --- cancer. My case was also sent to a Thoracic Overview Program at my hospital and it seems that I might be a candidate for a surgical rib(s) removal. Has anyone had a rib removed? They want me to have a fluoride PET scan before making their final decision. This news has been very encouraging because after 4 rounds of AC my tumor markers were not heading in the right direction, the Taxol I'm on now is bringing those numbers down and my most recent bone scan shows no new tumors!!! It is so uplifting to have good news and to have choices.
I will wait until I finish my chemo and all the tests are completed and then sit down with my doctor to help me decide. I still think the program at Shands sounds very interesting and I have not taken it off the table.Rangermom I am so sorry that you are having to hear lousy chatter from work. I hope the HR person is able to set him straight about how inappropriate it was. I am also keeping my finger crossed that the insurance for the MRIs gets straightened out quickly.
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Teacher that is great news! I don't know of anyone who has had a rib removed but if they are willing to do surgery I would tend to say go for it!
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No hit on the income tax from the accelerated benefits.
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Thanks Teacher for the great info. I was also told my
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Hi Barb, how are you? Let us know what's happening with you.
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Thanks Teacher,, I was told pretty much the same from Kathy at Shands. I ran it past my internest and he wasn't that thrilled with more radiation and feels I am doing the right thing. I have a new onc. and will talk to him in a few weeks. I started taking Garapentin for the neurothpy in feet and legs. Wow, did that pill do wonders for me mentally. I have been in the pits lately and I am back to living again. My internest said it is in the neuron family and could do that. Not sure that is good info to be passing, but it sure has helped this ole gal.
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I have heard that gabapentin can help with depression. It also helps with hot flashes. It seems to be a drug that does a lot of things. Glad you feeling good!
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thank you all for your insights and comments. I'm thinking many things over and as much as I'd like to say take this job and shove it, I can't. I will lose just about everything going out on disability, but maybe that's okay too. I'll never get this house paid off in my lifetime so what the hell. Why keep working to pay a mortgate, is it worth it, I just don't know. I will investigate my options seriously though and hopefully I'll come to the right choice for me. You are so right Scorchy, if you say I'm Fine when people ask, they think you really are fine and I too had to fight for my job back when I came bck off STD after surgery, it was a tough road. This one coworker doesn't like it that they make accomodations for me. Syrmom - you are right too, the stress and look how much energy I am giving this, isn't worth it. I've got to figure out what is....
I've got more radiation starting soon, and I saw this from Scorchy:
Thank you too all answered my questions about the frequency of rads. Your replies were really informative and helpful.
Scorchy
I need to go back and re-read because I want to know if you can have too much rads or not? I want to ask about rads up on the C7 area that's new along with the lumbar/left hip area. Already had 35 rads in 2011 and 10 days this past Dec. and more to come next week.
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Welcome Susan - that's exactly what I will do on Monday. Maybe the onc office just missed something. Either way, its going to be like getting blood from a stone because I don't have the money to pay for it...LOL
And I really get it about the pain keeping you on the couch. This hip pain is the worse I've had so far...It just doesn't let up. I am making an attempt to run an errand today at 4:00 pm. I would normally have been out the door around 10 am...oh well
Have a super weekend everyone...thanks again for your comments. they help ease my pain
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Rangermom, Another thought to consider regarding the job. You said you'd lose everything without it. Well, think about this, if this boss decides to get rid of you, then I believe benefit wise you lose much more. Better to leave on your terms. It might be helpful to go to the Social Security section and read the many posts there, I found it to be invaluable.
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I've missed something in the discussion about SBRT - what is KPS? How does it affect this type of tx?
Thanks.
Leah
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HLB- I guess my post wasn't clear. SBRT isn't a gimmick...he meant the brand of machine was. So he told me not to limit my search to just the VERO like at UF but to also look at those other places you mention. He definitely thought SBRT should be something I strongly consider he just didnt want me to think that there was only one place to get that treatment. Sorry about any confusion.
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Oh ok, I understand now. I think the difference might be the way that the VERO tracks the tumor while you breathe. I don't know much about all the different types of rads, but when I looked up the vero, it explained that its a combination of 4 different things that I don't remember the name of, one of them being sbrt. I also like the attitude of that particular dr, that people with limited mets should be given a cure opportunity. He wants to change the definition of what can be potentially cured. They also do more scans than usual after the vero treatment in order to find any new mets and treat them quickly. I like the idea of that too. Might not work for everyone but I think it definitely works for some!
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HLB- Yes, I definitely agree. Very appreciative of the info you gave me on this. Trying to research all options. Thank you again.
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Wow, I've been off the forum for a few days because I've been busy with work and spent the weekend at a swim meet with my youngest. I worked the meet (standing for hours at a time) and I'm paying for it today. My back is barking loudly.
I saw the MO today and we discussed the TDM-1 expanded access I'm currently in. The treatment itself is very easy to tolerate, and I hope I can continue on this for a long time. Scans will be coming up soon so I guess I will know more then.
Like all of you it seems that pain management is becoming an issue. I find I am okay during the day with only mild twinges in my spine where my two mets are. But at night, especially if I lie flat they are painful and not only am I very restless as I try to get comfortable, but i'm also keeping my DH up at night and he's not resting well either. We are going to explore RADS in the next few weeks based on what the scans show and he also gave me a prescription for tramadol. Have any of you dear ladies had any experience with tramadol? Did it help you? Did you have any negative side effects from it? Since I barely took a tylenol before all this cancer nonsense, I'm nervous about taking anything for pain. I would like a restful night but don't want to wake up out of it or nauseous the next day. Your thoughts would be appreciated.
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Swimmom3---- I was diagnosed with bone mets last may. When I started treated it was great pain went away I was feeling great. Than I had progression in November with really bad pain I was put on faslodex. My TM went down from 960 to 396 and other things look great but the pain never left. During the day it's bad but I could manage and nights it's a different story. I don't remember the last time I slept. What I would do for sleep. It's this horrible pain going down my right leg. At times want to rip the leg off. I will be calling my onc. To see if he could help me with quality of life advil does not work anymore.
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Oh Stellaratovsky, I'm so sorry that you're having bad pain at night too. My Advil takes the edge off it, but my husband pointed out to the oncologist today that I'm tossing and turning a lot in my sleep trying to get comfortable. I don't like to complain and I've never been one to favor an injury in my younger years, so this is all new for me to not be able to tolerate pain. I guess this is part of my new life with bone mets.
The oncologist encouraged me to try the tramadol, and I will this weekend when I know I can sleep in if I'm drowsy in the morning. I'll let you know how it works. In the meantime, I hope you can get some pain meds from the doctor so you can get some rest. It's terrible to not get a good night's sleep due to pain. Let's hope we both get some relief real soon.
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I have used tramadol before. I think its non narcotic or less narcotic than percocet and vicodin. I didn't use it for bone pain but for rhe pain in my legs that taxol gave me. It worked very well if I took 2, better than perc for that particular type of pain. I had very nice naps with it too.
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I can relate about the pain--especially nerve pain. I have slipped vertebrae in my lower spine but, my back doesn't hurt--it's my left leg that gets a radiating pain. It's that pinchy, tingly weird pain that can really sting. I've spent many sleepless nights, lately. I've been seeing a pain management doctor and have tried epidural (no help) nerve blocks (they help but for a short amount of time). I had high hopes for the radio frequency ablation but, it did nothing for me. An opiate drug (I've forgotten the name) made me horribly sick to my stomach. I can take small amounts of Vicodin but, it only helps a small amount. I've been on Gabapentin for the last 18 days but, it made me dizzy and nauseous when I got to the 1,200 mg dose. I was taking Vicodin along with the Gabapentin and it did make the Vicodin more effective I know that Tramadol is in the same "family" as Gabapentin but, I haven't tried that one, yet. I think side effects differ between individual people. So, who can predict? It's frustrating! (Oh, I'm still having sleepless nights...my thoughts won't turn off).
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I had low potassium from acid reducers that I was taking during chemo. I quit the acid reducers and added coconut water, raisins, and avocados to my diet. Got my potassium back up to normal after 2 months.
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Pain meds: Last November I rarely used a Vicodin. I have lots of degenerative changes in my back along with the cancer and I had the radiowave nerve obliteration and it has worked wonderfully for me and I need it again.
Aerial, sorry that it didn't work for you. I know they told me the facet joints have to be involved for it really to work and mine are heavily involved so maybe that is the reason I got relief.
I am now taking 60mgs. of Morphine 3 times a day, Neurontin for neurpathy one tablet twice a day with the Morphine and then have increased the Neurontin to 2 tablets at bedtime (300 mg. tablets) and I take 2 1 mg. Ativan at bedtime. Even with the Ativan and Neurontin I have pain that keeps me awake and I can also take breakthrough Morphine. My bone mets hurt ! Still having significant amount of pain in my left femur from the rod placement too.
Rangermom, not sure if you have had all the radiation treatments to one area. The most I've had for bone mets to one area is the 25 (5 of which I have left thankfully). I do feel there is a limit but wonder if it isn't also based on the strength of the dosage. I hope so because the RO acts as if I can have more and I feel sure I am going to need them.
Quadramet: Has anyone had this treatment or this been suggested to them. My RO suggested this to me. I have advanced bone mets but there is currently no lung, liver or peritoneal mets. I did have a small lesion on my liver and small peritoneal mets but with treatment they are not seen. He said this is an injection and it travels to the cancer in the bone and works like radiation from the inside and probably would require every 6 months. It apparently really lowers the blood counts, platelets especially if I understood correctly. The downsize to the drug is because of how it affects the blood counts, "IF" mets show up in other places then it is hard for MO to treat with chemo. He told me he felt I was the ideal candidate for this treatment.
This is a hard choice - something to really treat the bone mets but basically giving up chemo because of the low blood counts. So just wondering if you have heard of this, your thoughts please. I obviously have not made up my mind. I am on Medicare so not sure how they would cover this either.
Thanks, Brenda
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angel i get heel pain alot. had it before cancer. for me it is not related to cancer. hope you are the same. where do you get coconut water?
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For those of you who have had rads, how quickly did you start to feel relief from the pain? My mother's onc told her that it could be a month after she finishes rads before she feels any relief. The radiation oncologist didn't mention when she might feel better but did say that for some (30%) the pain increases for a week or two before it starts to feel better. She has her first of 5 rads later this week and at the moment can't drive or do much because the pain is so severe.
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Brenda, I haven't heard of Quadramet but it sounds interesting. One thought - if you need a shot every six months does that mean your blood counts might go back up if you don't continue? This might mean that you could switch to a chemo six months after a Quadramet shot.
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I had rads to hip for pain control. By the end of the 10th treatment I could feel very slight improvement. By the end 3 weeks relief was significant and I was pain free after 2 months.
My pain never got worse during treatment.
I hope your mom experiences even sooner pain relief.0 -
I was told I had cancer in my hip but no pain until yesterday, cause of the rain, who knows....does your pain in your bones more painful when it is cold out, and do you know if the cancer in your bones is in the marrow or tumors, sorry if I have crossed the line with the question, just curious? I don't know, I have to ask the dr., whether mine are tumors or in the bone marrow..thanks
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Blondiex46
There aren't any lines you have to worry about. I had a large mass in my femur that never gave me any pain. I have a spot between my shoulder blades that reacts to everything-chemo, neupogen, weather...and there is no cancer there. I was in a car accident years ago and I think this is old age and unforgiving bones.
I have mets in both hips but only one hurts.
It is really hard to figure out mets based on pain. Cancer in my pelvis never caused pain but the fractures it caused were definitely painful.
I am lucky. I don't have mets in my spine. From what I am reading, I think that is really a challenge as far as experiencing pain.
I don't think I have mets in my marrow...never asked.
Hope your pain is just a response to cold weather but it is still pain.
Stay warm and comfortable.0 -
thanks hightide, me either, again like I said have to ask the dr. my bone cancer is in my neck and lower back, ribs and my hip/pelvis....they hurt not alot but when do it is painful....
You stay warm and comfortable also, we are getting snow tomorrow night and the weekend.....chemo tomorrow...don't ya love cancer!!
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