Bone Mets Thread
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dlb, when I was on X, I took a blend with Milk Thistle, dandelion, artichoke and such by capsule on my weeks off, and drank dandelion tea throughout the cycle as I thought of it. I also drank lemon water and took Curcumin. Oh, and I took Bile Builder (amazing supplement, btw) which contains a lot of dried beet, to help the gallbladder support the liver better. My liver is insulted and always touchy (and apparently going fatty on me after seven years of processing these cancer meds), so now I'm trying to figure out how to take care of the old gal on Taxol.
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dlb -
I was on milk thistle/sylimarin last year to clear my liver, but my naturopathic oncologist took me off it. There were so many tweaks at the time, I don't know why. I don't know if it is not indicated for MBC generally, or the Ibrance/letrozol protocol I am on specifically.
I make large batches of ginger/lemon infusion by boiling ginger root and lemon grass. I keep it cold in the fridge and add it to my water all day long. I love it and so does my daughter. Might be good for the liver, but sure tastes great.
>Z<
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Thank you dlb823. Actually, to go into more details, she was on faslodex for nearly two years and started to have joint problems (knees, ankle, wrists) in the last six months. The pain creeped up slowly up until she was using crutches. She visited pain management doctor who presrcribed opioids. They didn´t make situation any better really. So PET scan was ordered which showed uptake in or near her painful joints. Onc told her that it was hard to distinguish whether it was in joints or bones and that it is likely that the pain is from the disease...Anyway, he switched her to docetaxel and Xgeva. She is two weeks past her first cycle and told me today that there is no improvement in her joints (she is still on oxycontin too) and she felt something weird happening in her clavicle...I am thinking myself, if the pain in her joints was from hormonals, it should improve after hormonal treatment has ended and if it was from mets, I suppose chemo would help subside it. At least oncologist said it would be helpful. But how long would it take.....She has never had chemo before (dgn was de novo), so the chemo situation is new to us.
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micmel thanks. Funny just today I went and got some patches because yesterday I stupidly made my shoulder way worse by climbing ladders and lifting my kayak. When I woke up this morning it felt ripped with sharp pains radiating into my neck. I used the rice bag that I put in the microwave which helped me get through my work day. Feeling slightly better.
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thank you Deanna, Z, Linda, Mom, and Stilts!
I am pursuing my second opinion. I have a pet scan and biopsy scheduled for Thursday with my local oncologist. My bone pain (tailbone and hip) seems to get more pronounced every day. The waiting And unknowns are tough, but this pain is a constant reminder that something is wrong. Did anyone else experience pain like this? Does it get better?
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Artist~I hope those patches help you. I can't imagine climbing a ladder, I don't think it would turn out too well. I am a stumbler, ever since the ac chemo, clumsy clumsy. Not to mention my fingers that all feel like heavy thumbs still recovering from the neuropathy. Last week I was changing my sweat pants after a wonderful night of heat flashes and a gallon of ice water. I did a face plant onto my floor in my living room in the middle of the night. I was so shocked I didn't break anything. All I could hear is my onc in his sweet voice. "Whatever you do ,don't fall.!" Ladders will not be in my near future.
I can live through all of you until I am able to do those things. Like travel, and even stay up all day without a nap. Fight on ladies! ~M~
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Tessio~ I considered a second opinion many times and it is a good idea if you're not comfortable with the one you have now. I was confused kinda like you seem to be now. I was diagnosed in Jan 2016, I went from stage two, to stage three, to stage four in a matter of two weeks at diagnosis. Each test I had showed spreading. I had a big tumor in my breast and it had spread already to my lymphnodes and one marble sized spot into my liver. Immediate stage four. Placed on ibrance was the plan. I went to see a onc surgeon to remove ovaries immediately to shut off estrogen. He said we want to remove the spot on the liver at the same time as your mastectomy and nodes. I had a better chance with this. It's almost never done for a stage four patient. So as a result, before surgery four ac chemos, surgery. Bad bad surgery. Pain pain liver surgery. Mastectomy yuck pain. Got the all clear NED.
Then onto 9 sessions of abraxane, harsh stuff. So sick. But gone was a heck of a lot of cancer. 14/35 nodes had cancer, they took all of my nodes in my left arm=lymphedema!😩
Meanwhile, what we really believe was happening all along was they were in my bones, but too tiny to detect as of then. So I got rid of a lot of cancer, and I believe that was a gift. A rare gift that I am thankful for. But I still have cancer just in my bones! I am praying since they are so small, about 5 places and early caught, that the ibrance army will attack and give me some time to love and live! Rest well ladies. ~M~
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Micmel. So good that they got so much and brought you to NED. Wonderful.
I need to ask some advice. Don't mean to whine but yesterday was a down day. It just hit me mostly because I am experiencing a lot more pain in my bones, muscles whatever. I have to wait six weeks for the next blood work to see if the Letrozole is having any effect.
I don't know what to think about the increasing pain. I tried to find out if bone mets grow fast or slow or medium and I couldn't find any information. Fear aspect - are things progressing and getting worse while I wait to see if this drug is working? What if it isn't? No way to know what's happening without a scan and that's not an option right away. Any input would be greatly appreciated. Scared.
Kathy
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Tessio - I don't have joint/bone pain from cancer, just from meds, so no advice. I do know it is scary. Hang in there.
Kathy - I think you are on letrozol (please update your profile so we have the right context to respond). Letrozol can have no side effects but it can also cause rip-roaring, knock you on your back bone pain and everything in between. If you are just starting letrozol, I am pretty certain that is what is causing this change. That is the good news. The bad news is that letrozol may be a tough drug for you. It certainly is for me.
Check out the Femara thread for advice and experience from people who are going through this. Femara is the brand name for letrozol and the thread is very old and goes back to when there was no generic letrozol.
My strategy is yoga, horse doses (2000mg/day) of liposomally encapsulated (Longvida) curcumin and Amyla Plex (find it on amazon).
Micmel - goodness you have been through the wringer. You are tough! Doing so well...
>Z<
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Kathy, Letrozole or any first line tx can take a few weeks to really kick in re. reducing pain. But it will. In the meantime, sometimes when drugs start to work, the pain can actually increase specifically where you have mets. It's called tumor flare -- a reaction of the mbc cells to the meds, which is a very good thing. But it can really throw you if you aren't expecting it. Also, there are 3 or 4 generic versions of Letrozole, plus the brand name, Femara. Your pill bottle should tell which pharmaceutical company makes yours. The issue can be the fillers, which vary from formulation to formulation. Some women have much more SE issues, including joint pain, from particular versions of the drug. The way around it -- assuming you don't have to get yours from a particular pharmacy -- is to call around and find a pharmacy that uses a different resource and try that one vs. whatever one you're currently on. There's probably some discussion re. different sources elsewhere within BCO -- maybe within the Femara thread link Z gave you.
Are you doing any pain meds? Even high dose Ibuprofen? In the beginning, that plus an XL heating pad and some 5% lidocaine patches helped get me through until the meds started working and eased my pain considerably. Also, I ended up having some fractures I didn't realize I had for quite a few weeks, so there was pain from those that weren't actually from mets. Chances are that's not your situation, but any worsening leg pain, especially, should be investigated.
Will your onc be adding Ibrance to your Letrozole? You may have talked about that earlier, but I don't recall.
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Kathy I'm in the same boat. I've been on letrozole almost a month now and it hasn't been easy. Been feeling tired, hormonal( I've turned into a complete bitch) achey not fun. I've been worried it's not working and all this pain is from my cancer . So yesterday I didnt take my pill and even though it was only one day I felt better. For me this tells me (I'm hoping) that it's the side effects. So now I take it at night and am hoping for the best. Scan next week will tell me more. Good luck to you
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Zarovka, Thanks for the information. I am on Letrozole. I tried to update my profile but am having difficulty with the program. I'll keep working on it.
dib, the most I take is aspirin or Aleve if it starts to bother me. I will check the bottle for ingredients.
Got to get a handle on the moodiness too. I experienced the same issue on Arimidex. I actually starting crying for no apparent reason on Arimidex. The loss of a hormone as necessary as Estrogen does some very strange things to us.
Kathy
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Wendy, Yup I know all about the changes in my mood and quick temper flares when I took Arimidex. I have been noticing a bit of that on Letrozole. I hope it doesn't get as bad as it was on Arimidex. I am sure at those bitch modes I was not a very easy person to be around - I didn't like being around me!!!
Kathy
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Artist, take care of that Shoulder! I still don't have full range of motion with mine yet and have to keep taking MM so I can at least sleep 4 to 6 hours.
Hi to all the new ladies.
My Japanese maple sprouted leaves over night. Sure sign of spring.
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Kathy - it's great that you are aware of these mood changes. the drugs are hard on all levels. give yourself a lot of love and room to make mistakes. it is what it is.
>KNC<
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Hi Kathy,
I have been on Arimidex for 6 months now and the SE are starting to catch up to me.. I have been moody and experiencing server joint pain in my shoulders and legs.. I am hoping it will pass as the meds have been working on the bone mets.. I hope the new meds help you!
Ronnie
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~ Kathy~ I use the slightest dose of 5mg Percocet and it works wonders. It really does help alleviate the joint pain. I take anastrazole which is arimidex generic. I have all the same symptoms and I do notice myself wanting to rip some heads off from time to time. Claritin also helps the joint and bone pain. I asked my onc about anti depressants while taking ibrance because I have heard that's an option, and he kinda grimaced. He said I would rather not have you change anything with what you are doing because your stable. I think he was worried about some sort of interference with the effectiveness of ibrance. Everything this onc has told me has come true , so I tend to really believe him. I don't like Meds anyway so I try to get away with the least possible doseage possible. But use what works. No sense in suffering. Have a lovely rest of the day ladies ~M~
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Hi Everyone,
Tessio, I have some ankle pain. The radiologist noted that it is arthritis. I developed pain in my shoulder and it was noted as arthritis. I was worried it was progression so maybe your radiologist can tell you if it's arthritis.
Chatsworth, Deanna gave you a great explanation. When my bone mets bother me, an Epsom salts bath and heating pad feel really good.
Hello to everyone else. I think of you everyday XO
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Just want to add one more thought about pain for Kathy and anyone else who is new to mbc. I think the bone builder, Xgeva, has been a huge help in both strengthening my bones and reducing the pain from bone mets. If you're not already on it, It might be something to ask your onc about. Again, it can take a few doses to really kick in, but it absolutely made a difference for me. And from what I've observed here, it seems to have a fewer SEs and is easier to take (a shot vs. IV) than some bone building drugs.
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Deanna, I agree with you 100% about the Xgeva! It has been a blessing as far as pain relief. The pain in my left arm was so bad that I couldn't even sleep on that side but thanks to Xgeva I only have occasional twinges of pain. My onc says its a very important part of our treatment.
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Ronnie~ I have been on the arimidex for almost 5 months and I am finding it easier with all of the tricks and help from this board. My palliative care doctor is also a wonder. I used to shy away from going because I thought that meant I was close to like hospice or something, but it's not. It's to make the patient feel as comfortable as possible to preserve your quality of life and allow you to continue to do the things you like to do. It has been slow going for me with some heavy chemo, but I know others here are traveling, gardening , running the mountains and planning things for 6months from now!!! It's fabulous! Explore all of the help out there that is available! My goal is to go away someplace with my fiancé of 14 years. Some beach sunny and free. Without any doctors offices anywhere near me.
I hope you find your pain regimen soon! Rest well and good night ladies! ~M~
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Additional radiation is looking more and more like a reality. I don't think I should wait until the pain becomes unbearable like last year.
I will ask about radiating lumbar mets and mets in adjacent muscles to the right of my lower spine. there are some in the pelvic bones, too. RO already told me I could have problems with my colon with this series of radiation. Anyone have experience with this, and how bad were the se'S?
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hi, new to the group. I have metastatic breast cancer rediagnosed May 2016, i have extensive bone mets pretty much no bone not affected, and this week diagnosed with liver mets aswell. This is going to sound like a strange question but I keep asking myself when am I going to get sick don't get me wrong I'm not hoping for that, but I still work full time, I feel great, I can still bush walk etc, I have a pain patch at all times due to back pain but it's manageable but I don't feel like I have cancer and it niggles at me this fear of when is it going to get bad, as my onocolgist gives Me a prognosis of 3 years, I know should be grateful and believe me I am, just the thought is always ther
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hi BnB, I feel exactly the same way. I just passed my 2 year date from DX and I feel like I'm living on borrowed time....I know that when it hits it will hit me hard and as much as i try not to think of it, its always lurking in the back of my thoughts.
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Bubbles~ the doctors really do not know. I have met people on here that have been told six months, and they are still here battling it out. You are still very strong, which in my books counts volumes, are they switching your line of treatment to see if you can have a response partial or even better shrink ? I saw my doctor yesterday and he told me there are two types of people, fighters and quitters. I do not believe you are the latter. One day at a time. I am sending prayers that your doctor is a few decades off his prognosis , and btw. Those are standard prognosis, I was told one to three before the medicine started working and I forced a surgery. Never ever give up. We just won't let you! Sending super strength and love your way! ~M~
He also said he has seen people with very little disease do horribly and someone else with a lot of disease do wonderfully. It all depends on how aggressive the cancer is behaving. Seems to me if your still active and have no real symptoms, that would be considered a good thing what I have learned over this past 14 months. Rest well ladies.
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My oncologist is just backwards from that ! He told me right off the bat standard is 3 to 5 years, but then he said he has women that I've been on for Femeraand Xgeva now or some type of shot for 5 to 7 years and are still doing fine . I told him I was shooting for 20 and he said that's perfectly OK ! I sure wish oncologist would quit telling people that they're gonna be gone in three years! Heck any of us could have a heart attack tomorrow and not even die of breast cancer
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Can't argue with that!! 😊20 years sounds good as well,I think a lot of the stats are outdated anyway. I never believe what they say as gospel anyway , no one knows what will happen. Just like Gracie said. ~M~
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Lita - the problem is I love radiation. Everytime, they finally did rads for Dani, it helped her tremendously. The problem is they are always so conservative. The only time it was done asap was when it was infringing into the spinal canal actually at the sacrum level. And the one that was at T1. Yes, it makes a lot of sense it could mess with your GI, hopefully it won't be lasting. It's a decision obviously you will make, but as they say QOL is important, and pain will keep you grounded, and then what?? You have that trip coming up, gotta get ready no? RO will tell you if they think it's wise to radiate, they won't do it, just because you want. hopefully if they do the pelvic area, they will be very precise.
BNB in a way I like things very straightforward. But as you will see I am my DD ghost, and as far she is concerned she is here to stay. She needs to be here for the kids, and she is sticking to this. Onco, was starting to give me the convo that this is serious, she has extensive stuff I hate the words) in the bones for years, and then went to brain, liver...I kinda said to her, hmm, no we are not going there, DD is very busy, cannot think of it. Privately, i think about it, 25/7
but won't admit it only here. There are incredible new treatments coming up all of the time, so time is very subjective, I'd say unless someone is literally in their last leg, and I've seen it up close what that is, I don't think someone could just tell you that.Mic you said it perfectly well.
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BubblesNBrow - 3 years really isn't correct for bone mets, even if you believe the current statistics out there. Odd thing for your onc to say. Makes me suspect his judgement and how he is treating you. He needs to shoot for a cure, not just palliative treatment to get you through a few more months before your inevitable death. Watch out for that... if you think it is going on, run run run to a different doc.
I am glad you are doing well with little pain. That says more about your outcome than anything your doc says. IMO, it is the pain and slow withdrawl from normal life, exercise, eating well that kills people as much as the disease itself.
>Z<
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Hi Bubbles,
Listen to the ladies on the forum they are wise and provide real life experience not statistics! I was diagnosed with Bone Mets Aug 2016 with a 3-5 year prognosis. To say the least I was devastated and accepted the ONC life expectancy. It wasn't until I joined this board are heard from these folks that I believed I could live another 20 years. There is hope and new medicine offering longer and better quality of life! I agree with Z if your doctor isn't optimistic and your cheerleader run like hell and find a ONC that is your advocate! We have alot of lift in us we just have to fight and never give up..
Wishing you well..
Ronnie
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