Bone Mets Thread
Comments
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Hi Vampeyes, I don’t think mine have ever been outside of the normal range.
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Hi Chef,
I was originally diagnosed in 2007, and had whole body bone scans done as part of my yearly checkup. Nothing was picked up unitl 2012 when a CT was done for some suspicious spots on my liver (which turned out to be clear), but which then revealed extensive mets on my spine.
My onc also said that the mets were probably there from initial diagnoses.
I have to add that I have Lobular Carcinoma, which is notoriously difficult to spot on scans, as it spreads out like a net, and not a ball like Ductal Carcinoma.
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hmmmm, so how do you feel about that? Did you have symptoms of it? And now they mannaged the pain
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Thank you illimae and Sadiesservant, that does help.
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Lynne,
I just wanted you to know how much I admire your way with words. I especially felt the love you were conveying to Babs, and you were right on point. The same will come for all of us someday, and I hope that I will handle it with dignity, but hope that others will respect my choice.
Babs, I hope you enjoy yourself, and don't be surprised if you outlive some of us! I have already considered doing the same thing, as the drugs they keep giving me make me wonder why I’m taking them if they make me feel so crappy. Please reach out if you need support from your friends here. Your courage is inspiring.
Lauri
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Hello All - I was recently diagnosed with bone Mets to the L1 spine (ogliometastatis). Just started following this thread, and found some great info (and sombre news) here. This is the reality I suppose and am just getting used to this new normal. Really glad to have found this thread...
I see 2 MOs, my local one here in Atlanta, and one in MD Anderson. I am having some mild back pain on and off and taking Advil for it for now. Both recommended curative radiation to 'kill' the cancer cells in the back. But they seem to have differing views on what medications to take. My local onco put me on ibrance right away after the biopsy results, and will be switching to faslodex from letrozole soon. Also he has prescribed xgeva. He doesn't want to wait to complete the radiation. I plan to have the radiation in MD Anderson. The other onco doesn't want me to take anything until the radiation is complete.
...
Different approaches I guess..what are your thoughts on this?
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Lita57, In a earlier post you mentioned that "Gemzar is a far different story" What do you mean? My CA 27/29 has been creeping up and my oncologist is stopping the Avastin/Lynparza so he feels this combo has stopped working. When my TM start moving, it usually means something is cooking somewhere. I stopped the Abraxane in August as the neuropathy was going on two years and he said that it could become permanent. I will be starting Gemzar in two weeks in addition to daily Lynparza. What kind of side effects did you encounter? My MD said I would experience much more fatigue. Thanks for your response.....Lisa
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Gemzar messes with your platelets and liver enzymes. I've had to skip several cycles to get the numbers back to normal ranges. I have hemangiomas all up and down my arms, chest, back and shoulders. I look like i have the damn measles. The diarrhea ain't fun either.
L
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Lita57, Sounds like a joyful time. I hate getting adjusted to a new chemo drug. Thanks for responding. Lis
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utopria,
he probably wants to see if any reaction is a result of the meds or the radiation. Although my first thought is to get on the meds ASAP, I actually agree with the onc who says wait. A few weeks won't hurt and then you'll be sure that if you are improving once you DO start the meds...you know the meds are working.
I had cyberknife multiple times on spine mets. Each time, the met was zapped away.
Good luck
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utopria....I was diagnosed Stage IV de novo with extensive mets and a lot of pain and my onc sent me for palliative rads before he would start me on treatment to see if he could at least get the pain under control. It was only for a week though. I have to say it didn't help the pain but I'm just letting you know it's not an unusual method of practice. After that I was put on Ibrance and Letrozole and I'm in my nineteenth cycle now and still stable. I hope this minimal piece of information is of help.
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Babs - I wish none of us had to have “the talk.” Hope you have some wonderful time with your family. You have offered so much encouragement to many of us over the years. Thank you!
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Babs - I am very sorry to hear that you have reached this point. Hugs.
Just wanted to provide a quick update -- had a scan last week which showed (consistent with my TMs, which went down a little, then up a little) that some of my "innumerable" bone lesions are now showing decreased activity, but some are showing increased activity. There are no new areas/lesions seen though, so basically it's stable, on a net basis. And stable is ok with me. So, I continue with the Navelbine, but may have a scan again a little earlier than normal, depending on what TMs show as we continue forward.
Hugs to all as we head into the weekend. - Lisa
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I have had sciatica hip pain in my left leg for months. All CT and bone scans are clear / stable. I have massages only do short walks and try to avoid prolongedsitting. I also get acupuncture take marijuana oils and pain medication to keep it under control xx
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I've just developed sciatica and plantar fasciatis ... I guess it's from the chemo b'cuz chemo can give you weird aches and pains everywhere.
L
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hi all, I’m needing a shoulder to cry I guess. I really starting to wonder about this qol thing. Before Jan this year I was a functioning mom of 5 and wife with a little part time job I had just gotten. Then the diagnosis came and major surgery to my hip femur. Well that alone has left me pretty screwed up with pain and my gait. But then onto chemo we go and it’s weekly taxol, I did it for 9 weeks. At first it was pretty good but then I started having more pain and unexplained fevers. So they took me off taxol. Things did not improve, obviously scans showed progression but my pain was unbearable so I did radiation to all the painful spots they could work with. That really did help with that pain. After recovery I could start new chemo which is monthly doxil. I’m in the third week of it and had zometa last week. So that’s my treatment, here’s my life. I spend most of the time in the bed, sleeping or on my phone, maybe watching tv but mostly just falling asleep. Why? Because it hurts so bad to move and I am so fatigued even if I get up I’m worn out just getting to the living room. The thing is I have other times where I’m relatively ok and can do some light housekeeping or go out with the family. The difference? These stupid fevers! I get these fevers that are anywhere between 103 down to 99.4 and when they happen they absolutely knock me down. I mean I can’t take care of myself anymore. Now after they go away I’m exhausted for a week maybe. What do i do about them? Well when things are at the worst I’m rotating Tylenol and Motrin also taking all my pain meds, ice packs heating pads, oh yeah forgot to mention it seems like with every new episode a new symptom happens, like this past time both my shoulders felt almost broken, like I struggled greatly to get my glass of water off the table, couldn’t lift anything and certainly couldn’t get comfortable, then this was added, I felt like a boa constrictor was wrapped around my ribs and I could only take tiny small breaths, extreme rib pain, dh wanted to take me to er at that point but I honestly couldn’t move or talk and unfortunately he can’t pick me up and put me in the car. I took big round of meds and added lorazepam for anxiety and finally fell asleep. Woke up to what feels like are a couple broken ribs. Have had those during this process. Next thing is jaw pain a stiffness. Not eating well at all. When it’s dr day for whatever reason I’m usually on the upside, so they always say well you look good all your labs are good so see you next week for treatment. I remind them about all the things going on with the fevers and they just say the same thing, they don’t know so they call them tumor fevers. I feel like my family has written me off already because it’s been way too long since I was the mom or wife to them that they deserve. I’m having a hard time seeing any light at the end because chemo is what I have to look forward to. I feel like I should have a serious talk with my drs but that terrifies me, I feel like by the way things have been going that I’m running out of treatments but I’ve only just begun. To be clear the drs have told me many times that I have plenty of options.i guess what I’m saying is define quality of life? Cuz I do get a couple or so of really good days here and there. Sorry to be such a drag:((0
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chef47, I'm sorry you're having such an awful time. I wish I knew something helpful. Your family does love and need you. They are likely still in shock from this new diagnosis. From your history it seems you had bc before. Did you "bounce back" at least from their perspective at that time? Maybe they think this time should be identical???
Does your oncologist plan to put you on Ibrance or something similar later on? Are you on Xgeva or something like that for your bones? People here say Claritin helps with bone pain. I take it but I was already taking it for allergies so I can't specify that for my bone pain. Even though my symptoms have gotten better after a few months on Ibrance my qol is not great and I sometimes think it's time for the talk with my doctor. I have lots of pain from neuropathy/lymphedema/terrible joint pain and trigger fingers. no exaggeration, most days I want to cut my own hand off. (I won't.) I haven't had the talk so far because my DH still needs me, or rather my knowledge about things on the home front. He's newly retired and that's enough stress and adjustment on him right now. But, when doing one load of laundry kicks me down, it's not a good outlook. I'm existing but I am glad to read a lot and watch tennis and baseball on tv :-) I try to do at least one chore a day but it's hard to see all that I can't do. I hope you soon get some answers about the fevers and that you get many more good days than bad.
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Chef...have you consulted a "palliative care" doc yet? Palliative care IS NOT HOSPICE...it just helps you manage pain and side effects, but you have to get a good pall care doc.
Mine is an angel. He has prescribed Voltaren gel and other things for my miserable back pain (I can barely walk across the living room). As far as housekeeping goes, I have simply had to let things go. My DH will vacuum and mop the floor if I ask him about 3 times. I can't do it anymore b'cuz of my back. He'll bring a basket of laundry in from the dryer, and I can sit in the La-Z-Boy and fold it. And my beloved rose bushes (I used to do all the pruning, fertilizing, etc.) have been turned over to a gardening crew that comes on a quarterly basis...I don't like PAYING someone else to do it, but my DH HATES yard work.
Basically, you have to adapt and move on. I know it's hard. I HATE losing my independence. I'm not supposed to drive anymore because my brain tumor mets have affected my vision and balance so much, and I HATE that, too. I get ripping headaches, and my eyes blur, ache and sting all the time, but I'm not ready to throw in the towel yet.
Don't be shy. You also have to keep nagging your onc dr. Don't take, "Well, that's just par for the course," from them. They work FOR US, not the other way around.
Medical Marijuana helps me with some of the pain...do you live in a "green" state? CBD tincture is NON-psychoactive, and you should be able to get it mail order, and it's legal in most states even where THC (the buzz part of MMJ) is not.
Good luck!
L
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muddlingthru, thank you so much for replying with love, compassion and you story. I dream of having an attendant, maybe 2 or 3 lol. But someone to keep the house spotless, take care of the pets. Someone else to nanny the kids and give them the best experiences possible. And the last one for me, to keep me spotless lol and help keep my mind straight. Somebody to encourage me but not bully, to do the I can with what I have as far as energy. I actually did splurge and hire a cleaning service for 6 man hours. I was so excited!!! They never showed up and haven’t returned my calls! Good grief. At this point it just might be a necessity like food and oxygen. So the good news is I’m up and on the upward! Per past history i
Normally will feel pretty good, just fighting fatigue, maybe I can make it to treatment on the 18 with no episodes, so that gives me a week. I do take Claritin and I think it works. It’s just that nothing works with the fever thing. Sometimes a part of me tries to believe that this fever is doing its best to kill the cancer!!!! I’ve always been a believer in faith and would have grabbed hold of this thinking and ran with it! I do try, the pain it causes drives me out of my mind though. Thank you for letting me vent....again! May we have peaceful days filled with unexpected gifts of love!0 -
Lita, You are incredible and I am in awe of how you perservere through any trials and have just made it work!!!
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hi all!
been a long time since i checked in here, was trying to live my best life without having cancer in my face every single minute. I see quite a few familiar faces & way too many new ones which makes me sad.
but it's reared it's ugly head again, so I'm back
I now have a liver lesion in addition to my bone & retinal mets, so it's off the ibrance/femera trial and onto a new one. i will try to get caught up on everything, but in the meantime wish all of you my best thoughts....
cheers, dee
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Dee,
I think you are the user I came across on Fb. Sorry about your progression but as I mentioned, the trial with Alpelisib looks promising. You can look it up a few threads down. Cure-ious posted a bunch of informative links.
Daniel
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Thanks Daniel. I will check it out. cheers, dee
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Hi Dee, I am sorry that you experienced progression in your liver. I hope you find that the new trial provides good results for a long time. Is the trial close to home or do you have to travel to treatments and testing?
Hugs and prayers from, Lynne
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Hi Lynne,
great to see you here. how are you & your husband doing? I'm afraid I haven't had a chance to go back through the threads I've missed.
I always have to travel. My trial MO has taken me on as a patient so I will now always have to travel for treatment. But honestly, it's not that bad, 6 hours each way sounds bad, but our ferry fare is covered by the province, we sit in our car, relax, read, nap. No more driving that horrible hwy especially in the winter.
cheers, dee
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Dee, My dh and I are doing well. He will have scans next month. I will be a nervous wreck, and he will be cool as a cucumber. I started on xeloda 2 weeks ago, so far so good. You are right. Six hours commute timeeach way does sound horrible, but at least you have adjusted and can relax. It is worth the trip to get the treatment you need.
Hugs and prayers from, Lynne
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Hi all...does anyone have low wbc and very high CRP levels? My crp is 85.1. My wbc is 648. I’ve had knots on my ribs. My ribs feel like they’re broke. I also have swollen lymph nodes under my left arm (the side the Bc Was on. Any information would be appreciated
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Hi I am a newbie. So scared. Had pins and needles in feet for 2 months. Dr finally did bloodwork and calcium was high. Then did xray and said bone mets to pelvis and L5 s1. mri was worse. Numbness is now in buttocks area and muscles in that area are not working. I also have leptomeningial disease. I just need some thoughts, prayers and support.
thank you, Ilene0 -
Hi to Chef47, just wanting to say that you touched me with your honesty. When its bad, its bad. A lot of change has hit your life since Jan., and it gets so complex trying to figure out what is causing pain and how to aleviate it. Oh, and which doc can help the most... I can relate to the frustration you talked about. I agree with Lita that palliative care people can do a lot. I met with the Pcare doc and felt an immediate boost as if my team just expanded. Which it did. She got me hooked up with a hospice volunteer who sounds great and, in turn, may be able to. get other stuff going like a house cleaner. The county hospice serves people who have serious illness, so not just when one has 6 months to live.
I lucked out and had 4 years with mets, but no pain, and I totally get why you feel overwhelmed at times, having pain from the start. It makes a huge difference. I now have daily pain from bone mets surrounding my r. hip joint. I go on Wed. for a consult with a radiation oncologist. I hope he can zap the areas that are causing this miserable feeling. I am a different person when I feel crappy, and having had taxol, xeloda, doxil, halven and gemzar since 2014, I have felt really sick and discouraged at times. The upside is that I know once I adjust to a new symptom or treatment or progression, I feel better and have a more normal life. But it takes some time for that process to complete itself.
I am slated to start Ibrance in two weeks. I began faslodex three weeks ago. Its helpful to hear that others are having some success with the combination. I hope it can slow down the progression in my bones and scalp, lungs and a gazillion lymph nodes. But I also hate going thru the rigamarole with new drugs and the nausea meds and heartburn meds, etc. Yuck. We must all be getting pretty good at this, but heck, its not really a transferable skill!
Hugs to all, I will be checking in on this thread more often now. I so appreciate this thread. Mam
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ihopeg, i would suspect that the numbness and tingling are more related to the lepto mets, than bone issues. Have you met with a neuro onc yet? I think they’d recommend whole brain radiation (WBR) for that. Feel free to join us on the Brain Mets Sisters thread, if you haven’t already.
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