Bone Mets Thread
Comments
-
AnacortesGirl
I agree with what you are saying.
I fractured my pelvis in 2 places and could not navigate our starcase. We put a hospital bed in my husband's office until I healed.
We have talked about what we would do once I need hospice. I would be back downstairs in the dining room this time. (dining room furniture goes to our son's house)
This may seem odd but I have friends who have done this and it worked.
Godspeed, can you create a space downstairs?
Selling and moving would add cost and stress. If you could avoid this it would probably be better.
I also agree that hoping to navigate a staircase in order to be back in your own room was a great incentive to keep trying.
I think if you were to buy another 2 story home, unless you can accommodate her downstairs, you quite possibly could be looking at this same problem again.
Hope current treatment offers her improvement and relief.0 -
According to the info I received in the mail they do bone mets. The radiation is called SBRT (stereotactic body radiation terapy) It pinpoints metastatc lesions and destoys them on contact. You can e-mail Cathy Hartley at: chartley@floridaprotonorg. Web site is: www.floridaproton.org.
0 -
Thanks for clearing that up Barb!
0 -
Does anyone else notice an increase in pain where the bone mets are right after the Xgeva injection?
0 -
AnacortesGirl,
Thank you for the tip.
My wife actually wants a new house, and I would like to provide her with the best one that I can. My wife is in great spirits now, so I take your point about not being the downer. I just want to avoid a time where (because of some bone mets related difficulty) she can only access half the house (because of the stairs). Even if she did not want to go to every room, I would think that being able to would have some positive effect on her. Not being able to would bring her spirits down. I am holding of for now, and trying to listen for clues later.
Godspeed0 -
Hightide1,
Thanks for the input. The condo is too small to fit a bed downstairs, unless I gut the living room. My wife likes order in the house, I don't think she would like the bed downstairs. I could live with it, but her house is much more than a structure. I am looking for that God given opportunity, and wisdom to know the answer. Thanks for the insight.
Godspeed0 -
It has been quite a while since I posted - I took a break from the board for awhile as there were many that weren't getting good news and we lost quite a few of our special ladies.(all ladies are special ladies by the way)
I was in the hospital in October for my low back with out of control pain. We switched me to Morphine at that time from Oxy simply due to the cost of the Oxy. We got my pain under control by upping the pain meds. My oncologist of 7 years left the first of Nov. I saw my new oncologist and she ordered an MRI of my L thigh. I had complained for months of it being twice the size of the other leg and it was very hard and it hurt; the pain was getting worse. We had checked it to see if it had a blood clot but hadn't done a scan. The MRI showed that I had quite a bit of cancer and could possibly fracture. Had to stop the Abraxane mid-November due to the neuropathy but it apparently had failed me anyway. Last chemo was Nov. 19th. Had surgery to have a rod placed in my left femur in December. On follow up visit the orthopedic oncologist told me that I wasn't out of the woods on the right side and may have to have a rod in that femur. The same day the medical oncologist told me that due to the blood clot (was found in my left arm 2 days prior to my surgery) and it being so close to my port that I would have to be on blood thinners as long as I had the port. Both my husband and myself felt so angry and defeated at that point. Oncologist, for the recovery period and to get me through what they thought would be 10 radiation treatments to both thighs and ischium (bone we sit on), started me on Aromasin. I saw the radiation oncologist and he wanted to do 10 treatments on the left side where I had the rod placed but 25 on the right side - to try to prevent my having to have another rod. I have 13 more radiation treatments to go.
Think we are going to have to up my pain meds again as I am having to use lots of breakthrough meds. The left thigh on my follow up visit looked as if it was more normal size and it wasn't hard. Now after the radiation treatments it is again swollen, hard and I can't put my socks on or reach my shoe to tie it. So frustrating and I hope it isn't permanent. My foot is numb on the left side also. Told me that could be from the block used at surgery and it irritated the sciatic nerve or could be from the surgery. I just know that the radiation treatments has only increased the numbness and it is painful at night. Hoping it will start to return to normal now that we have finished treatments on that side. My low back is really giving me problems again but that may be due to being on that hard table for all these treatments but also realize it could simply be that the mets in my lumbar spine have gotten worse. I am waking at night in lots of pain at my right shoulder/humerus. I know from earlier scans that there is lots of mets there but I feel this is coming from my neck and that there is pressure on a nerve as I am sore from my neck into my shoulder. They have mentioned I might need some radiation treatments to a cervical vertebra if it is putting pressure on a nerve. Does it ever end?
My husband had a stair lift installed so I could get in the house. We have front, back, and basement steps. We park in the basement so the lift is there and it has been a god send. We had looked into it figuring we would need it later because of my back, never thinking we would install one so quickly. I am not a winter person and since early December it just seems one thing after another has happened. I am so ready to feel good again and to have less pain.
I am still hoping that 2013 is a better year for me. I've read some of the post but need to go back a bit more to really be a bit more updated.
0 -
Naniam,
It's so good to hear your voice again! Sounds like it has been one heck of a winter for you, but things seem to be looking up. I lust after your stair lift. Was it a pain to have installed?
Take care of yourself,
Jennifer
0 -
I think you should try for a ranch. My DH wants the ranch because he has knee problems. I wanted a ranch because my Mom has asthma and COPD and she can barely make it up the stairs, esp. with a laundry basket. If you look, you might have a lot of family who visit that would me more comfortable in a ranch.
Of course we bought our current house with the knowledge that we would be transferring with my job in another 5 years, so it wouldn't be permemamt. Funny how life likes to screw up your plan.0 -
Jennifer, thanks. The chairlift took 3 hours to install and only one guy to install it. It is an Acorn and while it isn't inexpensive it wasn't as much as we had thought it would be. Is my Christmas, Birthday, anniversay gifts.
I've paid more for the Lovenox injections (blood thinner) since December than the cost of the chairlift. Honest. I was in the donut hole in December and the Lovenox has put me in the donut hole already for 2013. 15 days worth of injections today cost us over $600. Because it is generic, insurance did pay some of the cost.
0 -
Damn Nan! You have definitely been put through the ringer of late! I sure hope you can get your pain under control soon as there is nothing worse. Have you spoken to or seen a pain management doc? They usually do better in getting you comfortable than an onc, so........if you haven't seen one it might be a good idea to check one out.
Hoping things take a few steps backward for you.
Love n hugs. Chrissy0 -
SPAMgirl,
Thank you for the feedback. I do hope that you and your DH find that getting around is getting easier. I still have hope we will find the ranch style house that my wife will love. I liked your quote "Funny how life likes to screw up your plan". I have to remember that my plans are only as good as their alignment with God's will. I still pray for the miracle of a long happy life together with my wife; and for you and your DH too.
Godspeed0 -
Naniam,
I pray the pain subsides, and that strength returns. Thank you for talking about the option of a stair lift. I had not considered this option for the future.
Godspeed0 -
I was wondering if anyone else here has felt sick after an Aredia infusion? My mom had her first one yesterday from 1PM to 4PM. She started feeling very cold and tired about 3 hours later and it's now lunchtime the day after and she is still feeling very tired and achy -- bone pain achy. Is this normal? The onc told her that she might feel a little miserable and like she has the flu for a few hours but she is still feeling miserable. My mom's not a spend-the-day sleeping sorta' gal so I'm wondering if this is abnormal and whether or not she needs to see someone?
0 -
Canadagirl,
Yes! Flu like symptoms are not uncommon after an Aredia infusion and are most pronounced with the first one. This reaction generally diminishes or goes away entirely with subsequent infusions. I don't mean to sound rude, but didn't your mom's onc give her any information about this? Anyway, this is completely normal. I still feel "blah" sometimes after my infusions but the first time was the worst. She'll feel better soon.
Caryn0 -
I am new here and do not know the protocol of posting so let me know if I belong here. I have had four cancers (endrometrial, breast, lung, thyroid) and just this week have been diagnosed with mets to the skull and sternum from the breast cancer (diagnosed in 2002 and had a mastectomy) Stage 1. Guess I have been promoted to stage 4. Am completely overwhelmed by all of this and grateful that the mets were not from the lung cancer.
0 -
welcome and sorry you had to come.....keep coming back, a wealth of information and awesome people....
Sandy
0 -
Sorry geewood.....you have been through so much! But you're in the right place!
Canadagirl.....I felt icky after my first two Aredia infusions but now they don't bother me at all. I was really achy and tired. It lasted about 48 hours.
0 -
Thanks ladies. The onc said that she "might feel a bit miserable for a few hours" but this really knocked her down and for a lot more than just a few hours considering she's still shivering on the couch with bad bone pain and a headache. Few things have managed to ever knock her right out of commission this way so she was worried that it maybe it was a bad reaction to the med or something. I've let her know that you have experienced the same so she's resting easier now.
0 -
My onc said that some people have really bad flu like symptoms and wonder how they can keep going back for more infusions but she felt confident that it would get better, and it did! I am now getting Aredia every 3 months instead of monthly, starting this week. I wonder if I will have se's again since I've had the 3 month break. Hope your mom is feeling better soon.
Caryn0 -
Thanks Caryn! I think just the peace of mind of knowing that this is normal is helping her to relax and just ride it out.
0 -
When I went to my new onc I told him I was having some pain in the rib area where I have two mets and he pressed on the area and asked if it hurt and it didn't. My bone scan two weeks ago showed no progression. It only hurts when I go from sitting to standing and twisting. Is this how bone met pain works? I am number one worrier. Does bone met pain work this way?
0 -
Canadagirl - the first few time I had my Aredia treatment I felt sick and hurt in places I did not know I had for about 3 days. After that I was fine. Things did start getting a little easier after about the 3rd or 4th treatment, but I still have a few days of just not feeling very well after my treatments and I have been on Aredia for almost 2 1/2 years. I just know not to plan any big activity for those first few days after my treatment.
Godspeed - I have a 2 story home with the master bedroom downstairs so I do not have to go upstairs for anything and we just have it for when our children and their families come to visit. The only drawback is that the washer and dryer are upstairs as is my sewing room. We are talking about putting the washer and dryer in the master bath as there is plenty of room there and making what is not the back porch into another room for my sewing. There is no way we could afford to move at this point as we would not even come close to breaking even on the sale of this one. Those might be things you could look out for if you get another 2 story house. Hope you can find a house that your wife really likes that will fit all her needs.
geewood - you are definitely in the right place. Keep checking in and let us know how you are doing and ask any questions you have about anything. There is a wealth of knowledge among the ladies here and we all help one another when we can.
Nan - good to see you back. Sorry you have been through so much. Hope things will start improving for you soon.
Barb312 - my bone mets hurt when I move or stretch in certain ways, but they also hurt when someone touches where they are, especially on my ribs and back.
Take care everyone and I pray we can all get the pain under control. AJ
0 -
Caryn, just curious about Aredia. I don't remember reading about it before. Like many I am on Zometa and know lots of others are on Xgeva. Is this drug a newer drug, a preference of your oncooogist or does your bone mets have a different quality about them? Is the infusion time always several hours? Hoping with you that in 3 months you do well after having a break from the drug.
Chrissy, in reading I think someone mentioned you had lost your mom recently. If true, I am truly sorry for your loss. I do have a pain management doctor but between the ortho, medical and radiation oncologist, and the pallative care nurse haven't seen him in several months. He gave me the impression that he would prefer the oncologist manage my pain meds. His practice is part of the orthopedic group where I worked for 15 years and I'm still close to all of them.
Godsend, hope you find exactly what fits the needs of your and your wife.
Barb, I am not sure how to answer you. When we found my bone mets they were very extensive and I had no bone pain. I had low back issues from lots of degenerative disease and when we found my bone mets, of course, there was quite a bit in my low back. Other than that, no pain. Even with the cancer in my femur that required a rod being placed, I didn't really have pain until the month prior to surgery. I had compained of swelling and the muscles seemed to be in spasm but not pain. I think we all have a different level of tolerance for pain too. I have some mets in my arm and top of my skull. I can press there and it hurts but that is with direct pressure. It is possible that the mets may be near a nerve or a muscle in that area that could cause the pain. I am sure others with their experiences will be along to share.
ADDENDUM: See that another has just posted about being on Aredia - for 2 1/2 years. Frustrating that I don't remember this drug along with Zometa and Xgeva.
0 -
Caryn,
My onc switched my aredia infusions to every three months, and even after the break I have very few side effects with them now. I hope it's the same for you!0 -
Oops.....forgot......Naniam.......Aredia is very similar to Zometa. I believe it's been around longer than Zometa. I think they prefer it because it is cheaper. However, the patent runs out on Zometa in March of this year so a generic version should be available soon. I hope so because from what I understand Zometa is an injection which I would prefer to the 2 hour Aredia infusion!
0 -
There should be a separate pain management clinic. My DH goes to one for his migraines. I did have my pain pump installed by a neurosurgeon, but he was I estring things into my spine.
I had a a deep, deep muscle pain when I slouched in my chair or if I was walking. It felt like my back needed to be popped. After having my husband try it, I went to a chiropractor for the first time in my life. I knew I had pulled something and inflamed it. It never occurred to me it could be bone pain since it changed depending on my movement. It was the first time I was wrong.0 -
Hi all I have a question. I saw my mo and asked her if I would be receiving rads to my hip bone mets. She said no my dear the cancer is in your bone marrow. When I look at my results from all the scans and bone biopsy it doesn't mention the marrow. So my question is are all bone mets in the marrow as well? I feel kinda stupid having to ask this but it has me puzzled. Thanks Cynthia
0 -
No stupid questions here! Actually, that's a very good question. I had a 2 cm met to my upper femur but have no idea if it was in the marrow or on the surface. I did have rads x15 and the spot is now necrotic. I had no pain from the met.
Caryn0 -
Wow so I guess that is the reason for not getting rads , this cancer stuff has me so confused. I'm really scared to question my mo too much because I am so afraid of what her answer will be. Thanks for answering Caryn.
0
