Bone Mets Thread
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Lita, I had radiation to my lumbar, 20 days, and my RO did warm me about possible digestive issues but I didn't have any problems, except a brown stain on my lower back that I don't care about. And it helped the pain a lot
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Ronnie3001. I also live in Vancouver, WA. Wife goes to Kaiser Interstate oncology.
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girlwitha...thanks so much. I've pretty much chosen to go ahead with the Rads cuz it will only get worse if I don't. Like DH said, just look at it as an annual radiation tune up 😁.
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Lita, I also drank water with a little aloe vera juice in it everyday I had radiation. I figured if it was going to help the skin on the outside, maybe it would help my insides too. I hope it's not too taxing on you in addition to all the medicine. Also I saw you talking on another thread about Joshua Tree-- we are going for a few days in April and I'd love any suggestions! I'm so excited!
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- i have an issue with lymphedema in my left thigh that is quite painful as well as being unsightly. The mo was concerned enough yesterday that he rushed an MRI as he thought perhaps it was a tumor infiltrating into the tissue . the MRI showed nothing of the sort. So he started me on five days of steroids. Has anyone had lymphedema similar to this and for no apparent reason? My left side is four inches bigger around than the right thigh and my lower abdomen looks like I am pregnant. Walking is painful. Any advice would be appreciated as I feel like my mo has washed his hands of me since it Is not cancer. I have been doing lymphatic drainage on myself but I need more aggressive measures as I am afraid this increase in size will be with me forever. My arm increased in size in 2004 and has never decreased although the size difference in my arm was not as dramatic. Thank you in advance for any help you could give me.
PS. My mo told me to stop taking everolimous for two weeks to see if the swelling would go down.Nancy
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Nancy~ I have lymphedema in my left arm mildly and i know what you mean about terrible pain. I have looked everywhere for help with mine. I also do my own lymphedema massage but find I am not in any where as good as my therapist was. I am statrting to think I'm going to have to back regularly again, because I am having flare ups weekly now. I have found that sometimes the medicines we take irratate our fluids inside. Do you have any trunk garments, or have Discussed any decompression wrapping for you ? I wrap my arm every other day to keep the swelling at bay. Or else it just goes crazy. I have found the only relief I ever get from this horrible gift from cancer is the decompression wrapping and I also use the 5% lidocaine ointment. Which helps the surface area because I have extremely raw nerves under my arm where my nodes have been removed. I have been told there is little treatment for this and the surgeries they give us all are so important that when they say hey you could get this. That's the farthest thing from our minds. No one takes enough time to really stress how disabling and painful this chronic awful thing really is. I am sending prayers your way. I tried to take the water pills, some doctors ok with them , others are not. I took them for a month it helped a little bring the swelling down. But of course like with anything that was a temporary fix. Maybe with your increased swelling you could ask. Aboutthe decompression questions. Even if it's just wrapping your leg and mid section with the aces bandages, it truly does help me I'll send some prayers your way because I know how horrible lymphedema really is. I hate it.
I'm sorry we are all dealing with this crap!
~M~
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I have been stage IV for five years that they know of. I don't listen to statistics.
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I totally agree with you Diana. I know I have must have had it growing for years! You're inspiring! Battle on my friend. Sending strength that you will be done with AC !!!
~M~0 -
Nancy, does your hospital have someone who can do lymph massage? That would help you I think
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Nancy and Micmel,
I have lymphedema in my right arm, and found a site which offers free compression pumps. I applied and received one and have been using it with some success. I confess that I don't use it twice a day as they recommend, but even once a day helps. Go to https://conniecares.org/ to apply.
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DC~ thank you for the information. I will look into it. Thank you for taking the time to share this with me. Anything I can do for some relief. Rest well ladies!
~M~
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Nancy, I'm wondering if your onc has checked out all the not particularly mbc-related issues that can cause leg and abdominal edema, including heart and kidney function. Sometimes we get so focused on mbc and assume everything is due to that, but lymphedema in the two areas you're describing are not common, and I'm wondering if there possibly is an underlying cause that hasn't been totally identified. Maybe a consult with a really good internist? Just my initial reaction to your situation...
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Still planning to go for a second opinion but got the results of my bone biopsy showing still estrogen positive. My MRI showed that I have three fractures in my spine. I asked the doctor if they were improving (since starting the tamoxifen) and his response was "why would they be??".... he said that my fractures will not heal while there is still tumor there. He wants to start me on Zometa right away. Ladies -- I am overwhelmed... is there any reason not to do the Zometa? Is it true that my fractures will not heal otherwise? I gained 40 lbs during pregnancy and had a lot of very bad back pain while pregnant. I am now 2.5 months post partum and have almost no back pain at all except for when carrying my baby for an extended period of time and from the actual bone biopsy. Please -- is it true that I need the Zometa to heal my spine?? Its so hard for me to accept to take drugs with all those potential side effects when I am actually feeling quite fine... so I am leaning on you ladies for some opinions please!
Also when I asked my onc if my tumors were improving on tamoxifen he said "how would we know?" I'm so confused... won't scans show improvement or is he only doing the scans to see if its spread to my liver or lungs. He seems to think I might be tamoxifen resistant and I've been feeling sick to my stomach since he mentioned that as a possibility. On that note, anyone have a great onc they love in the Los Angeles area???
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Oh my goodness, fight... NOT liking what I'm hearing from your onc! But you're fortunate you're in the LA area where there are some great medical facilities and oncs! I use Sara Hurvitz at UCLA. She's head of breast oncology and she's in the Santa Monica office. PM me if you want her contact info. Not sure she's taking new patients at the moment, but it's worth a try to get in with her. She specializes in mbc, treats many long-term survivors, and is a wonderful combination of knowledge and warmth. If you can't get in with her, there are other oncs in the same office or the main medical center in Westwood who are also excellent, and there are other UCLA gals here on BCO who can give you specific names. Happy to help you connect with them if you're interested.
I'm not a doc and don't know your specific situation nor insurance, but I would lean towards Xgeva over Zometa. I would also hope that your fractures can be stabilized, if necessary. Your current onc does not seem proactive nor communicative enough for my taste, plus his question-like responses to your questions are surely adding to your feelings of being overwhelmed! I would absolutely move on quickly, before you make anymore tx decisions.
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Fight, dlb has some great advice. Kick you onc to the curb...he sounds like he flunked the "bedside manner" class. You need someone more supportive. Sounds like he hates his job.
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Fight~ any onc that says to me how would we know? I would hit the highway. They should answer anything you need answered, my onc always talks to me about blood work and tumor markers and levels of all kinds of things. I saw my pallative care doctor yesterday and she told me. Pain speaks volumes, usually if pain retracts it's a good thing, if pain is exceptionally bad maybe scans need to be done. But knowledge of what is going on is a must. Take a breath and find that second opinion. Never accept a how do we know. That isn't ok, Zometa is for bones that are weak and brittle and usually has side effects that are similar to xgeva which I have monthly shots of. Try the Claritin daily before you start, joint and bone pain are very common with these shots. Low calcium levels, sometimes infrequently jaw issues. I think if the second opinion states to take the zometa. I would take it. Xgevea is helping me. Also get ahead of the pain and get the shot. Before the pain gets a hold of you! I would consider starting the zometa immediately. The stats are in line with most bone strengthing injections that I have seen. Would really like to see Z weigh in on this as well. At least they are going to treat it and not leaving it alone. Sending strength your way. ~M~
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Fight: add my negative feelings about your MD. I was diagnosed with bone mets last May and remember at that appt my ONC said my fractured vertebrae was already starting to heal ...this was before any treatment had started! I have been getting monthly Zometa infusions since then and am pain free
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Ok -- so sounds like the general consensus is that my ONC is terrible -- at least in his approach towards me as a PERSON and even if his treatment decisions are good it will be miserable seeing him. So I'm on the hunt for another onc. Stupid question, but when I call a new office do I ask for a second opinion or just schedule an appointment for a consult? I did the second approach but then wondered if its really called a second opinion.
I'm trying to get an appointment with the UCLA onc that dlb recommended, but it seems like it will take some time to get in to see her. Should I proceed and get my Zometa infusion on Tuesday with the doom and gloom oncologist or not get any treatment until I've settled on who I want to be my oncologist? (You know that feeling of panic you have when you know cancer is in your body and time is passing as you wait for meetings with doctors and appointments for scans and biopsies etc that seem to take forever -- I'm currently in that state!! I want answers and solutions and to be doing something proactively for my health!!)
Stilts -- its great to hear that the fractures can heal without treatment!! What scans does your oncologist run to see the improvement? So far I've had a PET and MRI but it sounds like going forward I will be having CT scans and bone scans?
Thank you all so much for supporting me and holding my hand as I walk this difficult path with you....
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Fight~ since it seems to sound like it fits other treatments we have heard of. I would not wait to get the infusion. You're not in pain now. Don't give it a chance at all. Any doctor you see will also most likely keep you on that treatment unless of course you have adverse side effects that cannot be tolerated. A lot of people have no pain with the zometa . I have Xgeva monthly. The bone pain is there slightly for two days after but Claritin to the rescue (at least it works for me) the side effects seem to be very similar. Also you don't need to tell anyone you're getting a second opinion. Just call the main hospital that you scan at and have blood work done and tell them to transfer the information to your new chosen onc. You can just be honest and say. Not feeling the bedside manner. My onc is Japanese, very hard to understand and I had such issues seeing him because I felt like I didn't understand him fully. I struggled so much with learning his way of behaving and bedside manner. But after several searches and all information I could get, it turned out that everything he had told me was true, and was working, but he just sucked at it. I understand your struggle or fear in cutting the chord, when you need constant care, which is how I felt. In the end I chose to stay because he grew on me. But listen to your gut. One thing I have learned is it's usually right. The standard of care is what those oncs go by. It should not be drastically different, any where you land. In my prayers that you find your onc home ! ~M~
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My heart hurts to hear that any onc would call MBC patients either fighters or quitters. That is doing their patients a disservice.
I guess I would fall under his quitter category. I wonder what he would say if I told him my every single day is one giant fight. I fight to wake up, to stand up, to keep from scratching myself raw, to juggle all my medication (from cancer to hypertension to diabetes to glaucoma) and keep them from running out. The pain is unbearable and I am choosing hospice over this. This is a gift to myself and my family, who have also been busy fighting to stay sane, take care of me, keep up with school, work, bills, life, while I linger in bed slowly melting away to skin and ugly bones. And lots of tears when no one is looking.
No treatment is working and yes there are many many more, but I am friggen tired of fighting and I have had enough.
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Fight - follow the standard of care with your current onc. his treatment plan is the standard of care, as micmel says. but also start looking for a new onc. take your time. find the right one even if it takes weeks to get that first appointment. this is marathon (hopefully several) and not a sprint.
>Z<
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noni...you are a beautiful fighter in my eyes...wishing you a peaceful night
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Noni,I think it's a personal choice that only you can make, I have already explained to my family that I would never have harsh chemo again! No matter what condition I was in. It's a personal choice and you know your body. I know the doctor that told me the quitter and fighter comment was meant to say hey I believe in you. I've seen People do well. It was meant as a boost for me because I was having a bad day. Sometimes the mental piece is the hardest part, but when the physical part is too much to bare, along with the mental, certain decisions are made to make sure you are taken care of. I believe if you said how you felt badly To that same doctor , he would take your hand and say, you battled, you fought, it's your decision, anything you need from me, I am there. Because that is what he said to me.
If you feel you are ready for hospice, there is nothing wrong with that choice, I can understand completely how you would want to change the struggles for your family. I think about that every single day. I think your decision is honorable, and hope you find resting there is what relieves your stress and pain. I will send prayers your direction, that you realize anything you decide is ok. As long as you are at peace with your choice. Like lita purchasing her own personal urn. It's all about our own control and choices. Why not make a choice now, your capable of making it, why not take control. I believe in my heart. I would feel the same way. God bless you ~M~
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Fight, I see John Glaspy who is head of oncology at UCLA in Westwood. Also highly recommend Rena Callahan in the same office.
Can also help with recommendations elsewhere
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Thank you for your thoughts, Micmel, and for your prayers. Today I saw my PCP and he referred me to the lymphademic clinic at the hospital, and I hope it is soon,so I can get the wrapping started. The PA called me tonight to see how I was doing, and I told him I had seen my PCP and that the increase in thigh diameter was worrisome because it had increased half an inch in just two days. Apparently the radiation I had back in October was causing the current swelling because of lymph node damage all those months ago. I may have node damage on my right side as well, according to the radiologist who read the scan. In the near future I may have a biopsy done on thigh tissue because there may be a new tumor in the thigh. Between the pain and insomnia caused by steroids, March and April will likely have me watching tv all night. Reading has been interrupted because of lack of concentration. Enough complaining. You lovely ladies settle down for a restful night.
Nancy
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Fight...a word about Zometa: it's pretty well tolerated, but you need to prepare for the infusion. Be sure to drink lots of water the day b4, the day of the infusion and the day after. Dont eat any foods that might upset your digestive system either. Plus, take a Benadryl tablet about an hour b4 the infusion. That should help against bad se's. The infusion only takes about 15 to 20 mins. Most people get an infusion every 12 weeks. Some have to get it once a month.
Zometa for bone mets is given to strengthen bones. Zometa itself is actually a form of chemo, but for BC bone mets, they give you a weaker strength mixture. My MO says I'll have to have quarterly infusions for the rest of my life. I've had 4 so far. I had bad se's with the first one cuz no one told me how to prepare for it, darn it. The second one I only had a little diarrhea, and the 3rd and 4th ones I sailed right thru with no se's at 😁.
Don't put it off. It will help.
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Nancy~ one day at a time sweetheart. That's all we can do. Messed up damaged nodes , as we know can be bears. Call the clinic and be stern, but firm about the pain you are having. You need a treatment asap. I am so sorry that you even have to deal with any of this. I said to my dh last night, why do the craziest things happen to all of the good people in life ? Sorry to be so bold but there are rapists and murders out there, that have no regard for anything or anyone. And here we are a like a huge kicking a** team together and supportive family with respect and unconditional love and none of us really have even met. But O (zero) happens to them, or they get away things and live to see 100. Um hello, did someone change the intended script here on this production of what we call our lives dear sirs. ? It's just so crappie to know that we have to deal with such a horrible disease, when people rob and steal daily and never get a hang nail!!!!! Ugh!!! Makes me so mad. Gonna take the ridilan at 10:00, earlier until my body adjusts to this new found treasure! Thank you pallative doctor!
Nancy, do you have a pallative care doctor? The only reason I am asking is because you seem to be in a lot of pain and discomfort and hey have helped me tremendously, they have access to all kinds of things that helped me.
For example along with the ridilan, she also prescribed 5% lidocaine patches and ointment , which isn't dangerous because it's on the surface. What it does is numb the entire area of pain around my lymphedema in my arm. I have raw nerve damage, that isn't going away. Also, she told me that while the nodes are gone the fluid isn't and it pools and stays stagnant in one place if allowed. Which means that even a half an inch increase could also mean more fluid is being trapped because of swelling, doesn't mean always another tumor. Get to treatment, I am hoping it will go down. Ok I'm demanding it does! Is it possible to elevate your body more than usual.? That helped me.its why I rented a hospital bed. Elevation works wonders for me as well. I'm just trying to think of any little trick I've learned!!
I use it daily. The patches and ointment, Four times a day as needed and cut the patch to my needed size. It does really help take the edge off. The ointment is especially great because you can make sure it covers the areas that the patches won't reach. Another great thing she has shown me to combat chorionic daily pain. Once again i wasskeptical, but she again proved she knows her stuff!!! These people don't mess around! I will keep you in prayer, and you are all always in my prayers. You wonderful strong ladies !
~M~
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Fight4two - just to piggyback onto Lita's comments about Zometa. It is also very important to take care of any dental work (crowns, implants, extractions, oral surgery) before starting this treatment. Zometa and other bone strengtheners can put you at risk for osteonecrosis of the jaw and you will be more susceptible to it following dental surgical procedures such as extractions, implant placement, and gum infections. The risk of ONJ is low but it is real. A few ladies on this board can speak to it from experience.
When I was first diagnosed I had zometa infusions once a month for 6 months and then went to just one infusion every 3 months. The very first infusion is usually the one you will experience side effects from. I got very sick after my first infusion. It didn't hit me until 12 hours later and then boom - fever, chills, nausea - it was awful. I wasn't on this board at the time so I didn't have any helpful hints like hydrating well before and after the infusion. However, I mentioned my terrible reaction to the nurse the next month and she suggested slowing down the drip. So I had the drip time increased from 15 minutes to 30 minutes and haven't had a problem since and it'll be 3 years in June.
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Noni - you have the support and respect of everyone here! Like Micmel said - this is a personal journey for each of us. We may all have MBC in common but our experiences are so very different. And what a doctor says to one patient to encourage and support her is only meaningful to that patient. That same doctor may say the same thing to another patient and end up with tongue lashing. You are the only one who knows what is right for you.
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Hi all....I've been reading all of your posts and have been really grateful to find this site. I was diagnosed in January 2017 with MBC. I have at least six tumors (one in both hips, in the neck of both femurs, in my lower spine, and in my right rib), and wondered if anyone else has that many. Also, do multiple tumors mean that my chances of living with this disease go down? Or doesn't matter?
I am taking letrozole, iBrance, and xGeva once a month like many of you. So far, no significant side effects. I am still experiencing lots of pain (mostly in the rib and hips), and I hate taking the opioids...but I have no choice. I'm wondering how soon I can expect to see some results so the pain is minimized? I can't wait to get off the pain drugs.
Also, wanted to comment on Noni's post. I fully agree with the other ladies. Sometimes you just get sick and tired of being sick and tired. Being in pain is also no fun. I hope you feel supported and loved by all of us here who share this disease. We, too, will one day have to make a decision like you did, and it takes courage and strength to take control and make a decision like that for yourself. God bless
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