Bone Mets Thread
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SondraF - I hope you can find some relief. I think the pain might be slightly different depending on where mets are. My largest met, and the one that was diagnostic of my stage IV was in the right femoral neck and head of the hip socket. It had eaten through most of the femoral neck and half of the femoral head. My pain started months before as a dull ache that would improve with rest. I truly thought that I had pulled a groin muscle or had a labral tear. It was very localized to the inner thigh and front part of the pelvis and had that gnawing deep ache that muscle tears often do. I had several x-rays done by primary care and was told I was fine. When I reached out to my MO about it she orderd a CT scan that caught the met and it was confirmed by PET.
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Thinking of you, gonegirl! Wow, you’ve been at this ten years now!
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good to see you, divinemrs. You've been at this for a while too.
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I have a tumor in my left hip, thankfully it only bothers me when I do too much like you did. I went to a football game last fall and after climbing the stairs my hip was like "excuse me, did you forget you have cancer?" It's hard to explain, kinda like it's out of joint or something, can't put much weight on it. Usually I take a pain pill and it goes away though.
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I have been away for several weeks because we have done some short trips and had house guests, and this site was frustrating to navigate, but maybe it’s better now.
I have a pleural effusion that started in December. Thoracentesis was done in both January and February and a pleurex catheter was put in early March. I switched to Xeloda in early February. Back pain prompted the doctor to order a bone scan for last week. When I went in for the results yesterday, he wanted me to do a CT scan right away so I did that. The results from both scans shows worsening bone Mets in my hips, new bone Mets in the skull, sternum, multiple ribs, spine and now lung Mets and liver Mets. I will start Doxil in a couple weeks.
I have plane tickets to fly for vacation next week and I arranged my appointments so that I could still go, but I am wondering if I should.
I would love to hear some encouraging words that I can make some improvements in my condition. Dr was grim.
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GoKale - I’m sorry to hear of your disappointing progression. If you were able to arrange your schedule around treatments, I say go for it. Do what you can for as long as you can for as long as you desire. Hugs to you.
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Id say go, but have awareness of emergency needs like nearest hospital that takes your insurance and what to do if X goes wrong.
My team is always trying to shoo me out onto a vacation because we all know how it can turn on a dime. I do hesitate due to the worry of something going wrong (which did on the trip just before I was diagnosed and was frightening) but not going is giving more power to Cancer than it already has.
Has the cancer changed receptors at all?
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GoKale, I'd say go also. If everything is arranged and you WANT to go, a week away could be good for your mental health. And when you're back you start whatever new treatment is next. Sorry to hear of your progression. It stinks to get the news. As Sondra said, finding out if your receptors changed (biopsy) would be valuable in determining your next treatment. Edited to add: I reread your post and I see that Doxil is next. I hope it gives you great results and is not too difficult for you!
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GoKale - I agree with everyone, I think you should go if you want to go. I know we all experience cancer differently but with my diagnosis I try to keep life as normal for myself as possible and when I have the chance to do something fun I go for it.
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RK2020, Sondraf, Rosie24, Emac877 - thank you for your wisdom on doing fun stuff and taking advantage of opportunities that come my way. I plan on going on the trip.
Thanks also for reminding me about tumor receptors. I will call the doctor tomorrow about that. I’m just baffled by this tremendous setback even on chemo (Xeloda). Nothing I have taken has worked very long.
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Hi Ladies, I have extensive bone mets now and I am experiencing a lot of pain. They have prescribed every pain pill imaginable and I always throw up. I take naproxen (2 pills so 1000 mg) and if I don't have a full stomach even that can make me feel woozy. While the naproxen can help a little bit with the pain there are times like now that I need a more heavy duty pain pill. What are you all taking for bone mets pain? Also, is anyone taking LDN which is low dose Naltrexone? I read that they are using it off label now to treat inflammation, cancer and basically if you have a dysfunctional immune system which I would say we all have dealing with stage 4 cancer.
And Gokale, glad to hear you are going on a trip! I was just thinking the other day I should have traveled more when I wasn't in pain and definitely more mobile!
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Am I the only one using a Fentanyl pain patch? It is an adhesive patch that I put on my back or shoulder, and I replace it every 3 days. I started at the lowest dose (12 mcg/hour) and it made SUCH a difference. I've slowly graduated to 50 mcg/hour as I've got significant bone progression. It micro-releases the pain drug through my skin, so I'm not getting any big whop of drug. I still have to watch out for constipation (no biggie), but I don't feel loopy on it (well, I didn't, the 50 mcg makes me a bit fuzzy and tired -- I'm not driving anymore).
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GoKale, that really sucks. I'm so sorry. I agree with rk2020, to make the plans but have a contingency plan in place. I just updated my blog and I wrote about wanting to make plans, but being afraid of all the "what ifs." I ended with the biggest "what if" which is a line from the movie "What About Bob?" In the movie, Bob says, "What if I'm looking for a bathroom, I can't find one, and my bladder explodes?"
I totally get it. I'm planning right now for a girls weekend with some of my college friends. I hate the "what if" fear, but I'm just going to go with it. I'm stable for the time being, so I'm thankful for that. I'm so sorry you've had progression. Stupid cancer!
Anne16, have you had radiation to the areas with the bone pain? It helped me immensely with the pain. I'm so sorry the pain pills have been so rough on you.
Hugs to anyone who needs one (or more than one.)
Carol
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Sunshine - thank you for the encouraging words on travel. I'm glad you have a girls weekend planned. Sounds fun! I don't like to make plans too far ahead, either. So I prefer to wait and see. If I have to pay more for tickets because I waited, I am okay with that.
Anne16 - I take Tramodol at night, CBD oil or Aleve during the day. I agree about radiation, it helped me so much when I was in terrible pain. I have not heard of fetanyl patch or LDN, but i will keep those in mind.
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Hi Ann, I take LDN. My Naturopathic doctor prescribes it for me. I haven't had any side effects from it, but I know others experienced crazy dreams. It has really helped reduce inflammation. I also use CBC gummies, Aleve and tiger balm patches..
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Has anyone heard good or bad reviews about City of Hope in Mexico? They treat cancer with 200 different non-toxic therapies. It’s not covered by insurance so it’s wicked expensive. But you go for 3 weeks straight and get therapy all day for 6-7 days a week. You go home with equipment and supplies to keep doing the protocol for 3 months then go back to check how it’s working for a few days. It sounds great, but I wonder if it will work? Does anyone have any knowledge about this place?
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gokale, I think you are referring to Hope4Cancer. City of Hope is in the US. Hope4Cancer is well known but not in a good way. I’ve heard of several who spent a fortune going to the clinic, only to return home much sicker. If you search online you will find scam alerts.
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pearl-girl, that has not been offered to me yet but with all these other drugs that are not tolerable that may be my next route. Since it helps with the pain, do you find that you do more movement than you usually would? I think I am so fearful now of falling or breaking something. I was told not to twist, bend, etc etc. I was like are you f'ing kidding me?! And sure enough I am so scared now my husband is literally cleaning the toilets and tubs now. I can still do the sinks. I look like I am 90 the way I move and it is so frustrating and so depressing! Anyway, if I had this patch and felt no pain, would I risk moving like I normally would but then break of fracture something?
Carol, I did more radiation in Aug. 2021. He basically did my SI joints and sacrum/lumbar I think. But we are looking at radiating the hip again and my lower back is REALLY hurting now. I wasn't having pain in August but he wanted to hit the spots that he said would cause me the most pain. And now all I want to do is go see my chiro but know that I can't do that anymore! Thanks for the hugs. I need them. All I did was cry today. In PJ's all day and just having a pity party over here! If anyone is inclined, I would appreciate prayers. I think I read earlier where someone that is the pain that is unbearable when in this stage and that is for sure. I was NED for a good amount of time and was living a fairly normal life. I think I am grieving for those days.
Gokate, Unfortunately Tramadol did not work for me. Threw up with that too. Do you have to take anti nausea med before you take it? I tried that as well and still threw up! I have heard of the place you are talking about in Mexico. I would love to go but money is an issue and it being out of the country. There is a place that I heard about that is in Scottsdale called Envita. I think they do some of the same things but costly as well.
Simone, so has the LDN helped with the bone pain since it brings down inflammation? Can an oncologist prescribe it? What milligram are you taking?
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Would acupuncture help with pain? I have no idea, but I'm just grasping at straws for anne16. I hate pain, but I hate nausea more than I hate pain.
Carol
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Anne, I find that my pain is more manageable if I can keep my inflammation down. I have arthritis in my lumbar region along with cancer in secrum and hip. It might help you too but you would still need something more. One thing about LDN is you can't take it with opioids. I take 4.5 mg for 4 days each week, followed by 3 days off.
Not sure if your MO would prescribe it. It also has to be filled by a compounding pharmacy.
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Anne, so sorry to hear of your pain. I've always been afraid of more pain. Had enough already and there is no end in sight. I always figured eventually I'd use THC for that but not yet.not legal here yet either.
For severe bone pain I'd see about radiation if possible. Worked great for first bone met. But now it's arthritis and bulging disc from herniation. The two that helps me the most is keeping inflammation down with less sugar in diet and curcumin supplements! Rather doubt that would help with cancer pain in bones. Meloxican prescription has been wonderful for flareups. Stronger than ibuprofen. Kinda liKe Tramadol with fewer SE.
Now I have ONJ stage 0. Infections are painful. Treating those helps almost eliminate pain in jaw. The curcumin manages everyday pain. We all know what that is, right?
Did you check the threads on pain?
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Gailmary - I am aware of curcumin but not sure that it is safe for estrogen positive breast cancers.
Gokale4320 - Enjoy your trip and I hope Doxil works wonders for you!
Sunshine - I have been using acupuncture to deal with lumbar pain, sciatic nerve pain and neuropathy in my feet from chemo for over a year. I do think it helps me but is not the only solution but a piece of it.
Simone80 - I will have to research LDN to see if it is right for me. Thanks for bringing it up!Anne16 - I hope the radiation helps with the pain. For cleaning, I have found that they make some tools to make some of it easier. For example to clean your tub and shower, several companies make a scrubber that has an expandable handle so you don't have to bend over to scrub.
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GoKale- I would go- everyone's life is unpredictable- ours is more so- my MO says- Go, just get trip insurance, it IS hard to plan with this disease- the trip memories will sustain you. there is a Doxil site- not much action on it- I may be joining it soon and I hope that you will post there.
So sorry for everyone else's pain, I have only use Motrin so far- yoga, stretches.
Hugs to everyone.
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Has anyone experienced partial face numbness along with piercing pain in head or cheek? I do have skull Mets but I don’t know exactly where. I started with face numbness in December (no pain) . An mri was done on my head and it was clear in December. Then it was only in the middle of the night along with pain in my head, and it wasn’t every night. Lately it’s every night. Yesterday it started during the day, an ice pack helped. I have a call in to the oncologist, but I think his whole team is sick of me and my phone calls. They don’t return my calls. The social worker there was supposed to order me additional catheter supplies because I drain it every day. She was hostile to me and didn’t do it. I had to make multiple calls and today I have to call the supplier to see if she actually did it. I’m considering changing practices, but it’s a 3.5 hour drive to a potentially better place.
So that was a big vent, but I really do want to know if anyone has any thoughts about face numbness and head/face pain. Thanks!
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Anne16 - regarding nausea, have you tried Sea Bands? It’s an acupressure band you wear on each wrist. It helps me when I need it. You can find them in many drugstores and they cost about $15. They might be called a different name depending on the brand.
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Hi Carol, I was doing acupuncture prior to this pain really setting in. I may have to go back and see if that helps. All this holistic stuff adds up so I was taking a break because of money.
Simone,I think inflammation is a huge factor too. Has the LDN had any effect on your cancer as far as killing it or putting it to sleep?
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Hi Anne, I am a pretty big believer in supplement ing SOC with alternative therapies. I threw quite a few things at my cancer early on, hoping to get to NEAD. I am left with a few inactive mets in my hip and sterum. I don't know if LDN has helped keep me NEAD for almost 3 years, but I have read LDN is good to take for cancer. I found a good Naturopathic oncologist to help me with what to take and how much for where I'm at in my cancer diagnosis. Protocols change depending on how active the cancer is. I don't know if you have access to a Naturopathic oncologist but there are quite a few things out there that you can take to slow things down. Another thing you might want to look into is Mistletoe. Do a Google search on believe big org, lots of info on that site. I hope you can find something to help you.
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Hi GoKale. I had facial numbness but not the piercing pain. I had some nerve related issues which led to the diagnosis of my skull mets and cervical spine mets. I started having issues with numbness along my right lower jaw and the side of my tongue. It was a bit annoying but not bad enough to risk the potential side effects of radiation so we chose a wait and see approach. About a year later I suddenly experienced persistent blinding headaches. They would come on by about 11:00 AM each day and would get progressively worse to the point that I could barely function. At that point the scans were not showing any progression but my MO put me on a steroid that was like a magic pill. It took care of the headaches completely, practically overnight. All this pointed to something causing inflammation in my brain. Just a couple of millimetres growth could press on nerves and there are so many at the locations of my mets. I had five rounds of radiation and the problem was solved.
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Hi Simone, I have heard of believe big and IV vit c and mistletoe. Very interesting! Are you doing those too? I can’t remember.
I did call Envita and they said cost could be anywhere from 40-120k dollars depending on how long you are there for treatment. This would not include hotel or rental during your stay. Yikes!
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Wow, Envita is crazy expensive. I did IV C at my naturopathic doctor office a couple of years ago and the cost wasn't even close to what Envita wants. I don't take IV C now. My Naturopathic doctor showed me how to do the mistletoe injections so I buy the mistletoe from her and do that myself at home.
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