Bone Mets Thread
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Hi Chelle,
I've had Zometa. Some people (including me) get flu-like symptoms for a day or two after. Hydrate well before hand, and I've also read that taking a Claratin (or similar) before hand helps. Slower infusion is better - I'm sure someone will pop up with something about this. My infusions were 2 hours, but I'm reading some that have had 15 minute infusions. I think 45 minute is kind of minimum for fewer side effects.
Good luck!
Terr
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Just had a text from Patty! Sounds like she's doing much better. Will get more info to share, but I was so reiieved to hear from her, I wanted to pass at least that much along ASAP.
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dlb823, thanks for passing along the info on Patty! So glad to hear it's good news! Keep us updated
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Cjanet - My mother experienced a burning-type pain a couple of months after starting her treatment and was sure it was failing. She's been stable on it for over 18 months. Her onc also confirmed that increased pain could have been from a "tumour flare" which can happen early on in a treatment. It can also be from healing mets. In my mom's case her collarbone was the biggest cause of pain which led to her diagnosis. When she started treatment the pain seemed to improve and then for a while it increased even though her mets were healing. It was attributed to the bone healing and things "shifting".
We've learned that not all pain is progression, thankfully.
Hoping your pain is a sign of regression.
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Kiwicatmom, well that's really good to know, because when I asked my onc nurse how long they take, she said "about 20 minutes" I will definitely bring this up when I call on Monday to schedule my first infusion. I'm not liking the idea of flu symptoms, but will hydrate and buy some Claritin! Thanks for the tips!! On another note, I have an aunt and cousins in Auckland, They are always globe trotting and come to Denver every couple of years. I have always thought I'd pay them a visit someday. Beautiful country!!
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Deanna, thank you for the news about Patty, I'm so happy to hear she's feeling better. Please keep us posted if you hear more. We all miss her and are praying for her.
Hugs, Annie
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thank you Deanna for letting us know you heard back from patty
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Michelle,
I've have been o. Omega almost 4 years, they always infuse over 15 min, and I always am always very achy and tired for about 4 days. I'm definitely going g to ask them to slow I down next time. I've been having a lot of pain in lumbar area and left hip, muscle spasms and twitching of left leg. I finally got a MRI scheduled for Tuesday and find out results on Wednesday. Feeling a bit anxious. Marilyn
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Hi, Everyone,
I'm a frequent lurker, usually when I have insomnia. Usually too tired to write or too confused to follow everyone's posts and reply to the correct one! I feel I know you all. And I find much comfort and comraderie being part of this community even if I rarely speak up. I just started working part-time instead of my full-time job as a nurse practitioner as the primary provider in an osteoporosis clinic, and I'm feeling somewhat guilty about going part time. Was experiencing increasing s/e of treatment and most likely some s/e from the bone mets. Doc suggested a lighter work schedule which has helped.
I'm in a clinical trial at one of the first NCI designated National Comprehensive Cancer Centers. My care team is wonderful but sometimes they are at a loss for answers to my questions because my disease process is a bit rare. Because of my position as an NP I have access to a lot of sites for accessing medical info not available w/o joining through an institution etc. but there is a dearth of science/research available for MBC esp bone mets and with distant recurrence from first diagnosis.
My question: is there anyone out there who has "innumerable sclerotic bone mets throughout their skeleton"? My bone scans and CT scans show that it is hard to tell which lesions are old, new, or lighting up due to treatment effect because there are so many! Tumor markers don't give good info for my type of lesions, so we don't use them or even have them done. I'm 1 year with MBC with my "innumerable bone mets". Originally diagnosed Stage I B in 2006 was on an AI for the entire 7 years before the return with bone mets. I read a lot of posts about bone mets to specific areas but mine are throughout my skeleton. Any one with bone mets all over the place? My symptoms and pain are so erractic I sometimes believe it's a lot psychosomatic and I should just pull up my big girl panties and get on with it. Thanks so much for listening.
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Msparki, yes ma'am, I also have ILc and idc. But the ILc is likely what has spread to the bones, my skull, spine, rib cage and pelvic all look dense under pet scan. No particular tumor to speak of. The ro and mo were pretty sure it didn't look like cancer, but decided on a bone biopsy to confirm. Did the biopsy and came up positive with cancer cells. It was a serious let down. I just got those results on the 10th of this month. I'm a newbie, I have just started on tomoxafin, starting zometa treatment this week. I really don't have a lot of pain. I'm probably not much help, but wanted you to know that you are not alone! Love and hugs. Chell
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Chelle - you should come visit! You're welcome at our place anytime too - free place to stay is always good.
I grew up in Rapid City, South Dakota, and we spent a lot of time in Denver (the big city!). So Colorado feels a bit like home too.Deanna - thanks for the Patty update. Glad she's better. Hope Dune, Hope and Carla are doing ok also.
Marilyn - sending good thoughts your way for the MRI.
Msparki - welcome! I have mets in my femur, spine, ribs, and pelvis. I know there are some here with mets in their skull, arms, etc. So there's people who are spotty all over.
Thanks for the links TX and Deanna.
Milaandra stable scan! Whoot hoot!
Momallthetime, Glad you're switching oncologists. Can't imagine how hard this must be for you and Dani. Praying for a successful treatment for her.
Bosco, hope you get out of the hospital real soon and glad your counts are recovering and your cough is better.
Cjanet, I am also hoping that your increased pain is regression and not progression. My bones hurt like heck and I was sure it was progression but it was growing pains from healing bones. Praying yours is the same.
LindaE & Annie - glad you're both feeling better.
Wendy - we have similar health system in New Zealand. It's fantastic and awful all at the same time. Care is free, but "extra" care isn't available. I'm lucky to have a great MO.
Myra - counting the days to seeing the beautiful grand-daughter again?
Dee - hope you're doing ok!
Hi to all I've missed!
Sending hugs to all,
Terre
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rnsparki - My mom also has innumerable bone mets from her head to her feet -- or wherever it is that the bone scan cuts off. Her tumour markers are also not accurate for her and remained the same even when she had significant progression. Her onc alternates between CT and MRI every 6 months and if she is experiencing symptoms. We don't use PET scans here.
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Thanks for thoughts. Should have said I was discharged yesterday. Platelets around 70 so much better. More tests next week. And so I made my shopping trip with BF. Too tired to go to a dinner I didn't want to go to that night though...more silver linings...
On the Zometa and flu, that did happen the first time about 48 hours after infusion but I was warned to expect it and took paracetamol in advance so very mild. On Claritin, I get that by infusion as part of a premed package. Will ask next treatment which premeds are for which drugs.
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Hello, Msparki. I, also, have multitude mets everywhere: shoulders, arms, spine, ribs, hips, femurs, and skull. Additionally, I haven't had tumor markers checked either, because they don't work for me; so far, my status has been checked with CT Scans and Nuclear Bone Scans. I've been taking Arimdex for five weeks, and begin Xgeva shots next week. Before I began treatment, I had intermittent bouts of pain in many different places at different times so intense that I was virtually unable to move on my own at times. Other times, I was unable to sit down in a chair for the entire day. Lately, however, I haven't been experiencing pain and can only attribute that to having begun Arimidex. I, also, wondered if I were alone in the massive spread of areas affected. xo, Valerie
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Welcome Msparki! I also have numerous bone mets...humerous,femurs,ribs,skull,spine,sacrum. My last scan showed mixed lyric and sclerotic lesions. My onc says that shows healing in some areas. My tumor markers are very accurate ,203 at diagnosis, down to 58.6 after 5 cycles of Ibrance/ Femara. I also take Xgeva injections every 4 weeks. My initial pain was in my left arm, which led me to the doctor and the discovery of mets. Pet scan showed I had a fractured rib..no pain. My pain now is also erratic, mostly left arm, right ribs and back. Some days no pain, other days a lot. My onc says that Xgeva can cause bone pain, also bones hurt when they are "healing"/ repairing themselves. My original diagnosis was in 2008 with stage 2, no lymph node involvement. I completed 5 years of Femara and Tamoxifen. I have also wondered how they can tell if the bone mets are healing as well. My onc says they will always show up on scans, almost like a scar on the healed bone
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Good morning ladies,
I did read up on the posts!
Deanna, thank you for getting in touch with Patty, I'm so glad you did. I'm glad she's doing better. I hope she will return here if she's able. I was ready to say let's take the next step and call the husband!
Welcome Msparki! I'm glad you decided to start writing so we can get to know you but glad you already have been lurking and know a lot about us. I don't have bone mets everywhere but looks like you do have company, my mets for now are all along my neck and spine.
Bosco- glad you have been discharged!
Thanks for the feedback on the pain, I"m really hoping it's what you guys are saying. I want to give this Ibrance a chance to do something before jumping to conclusions. Yesterday the pain was slightly less and then kicked up at bedtime. Let's see how today goes. I am going to try to take my kids to a work event in the afternoon.
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Good morning ladies. I also have bone mets throughout. First scan said "too numerous" to count. Others have not said that. It is worst in my hips. Was very achy and unhappy last week since a huge low pressure, the remnants of Tropical Storm Grace, came roaring through. I felt like I had aching arthritis from my neck to my knees. I am very susceptible to the weather.
Welcome mspark, hope you are going to join in with this lovely group of women. As you can see, we all look out for each other, both in good and crappy times.
Annie and LindaE, glad you both are feeling better.
Terre, yes first week in Oct. off to see the baby. It is only a 2 hr. Plane ride. Done with 15 hour car rides!! Tush has just now recovered. Things take twice as long to recover as they used to.
Well, good day to all love, peace and understanding. BTW, pink washing has already started in FL. pink license plate holders. I HATE OCTOBER.
Hugs around, Myra
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Happy Sunday all,
I also heard from Patty last night. She says that she's feeling a bit better physically, but still exhausted and tired and feels she could sleep 20 hours a day. Thanking all for their concern and love. She may pop in MBC over the next few days if she feels up to it.
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Good Morning to all
I know I always say this, but this thread does move so fast I find it hard to be able to address everyone. And i'm sorry I feel like I still have more questions than comfort.... I hope to turn that corner soon.
Deanna and Linda E you both always provide such stable info. Thank you. I never interacted here when Patty was posting, but glad that you heard from her and that she is doing better.
TxMom great links TY
Bosco glad you are home and platlets are going up. How was shopping?
Momma- I hope this new MO/treatment plan is more effective for Dani- thinking of you.
Cjanet stay hopeful that it is regression that you are experiencing
Msparks welcome. I have mets to sacrum, illium, actetabulum, femur, L3&4, T8, sternum, collarbone- so multiple. I am 'new here' so just getting started on treatment.
I am hoping that what everyone shares is true that increased discomfort can be a response to treatment taking effect; I guess I don't fully trust it could be 'working' after just 3 weeks on Tamox. Had my first herceptin infusion last Monday, tomorrow is second. Also the 'pain/discomfort' I feel is more nerve like. It's not bone ache pain...
I also feel like my radiology reprot isn't complete somehow. Evryone here seems to know what type of lesions they have and the size in mm/cm Was that determined by your PET CT scan or a bone scan? I'm feeling confused and want more info than just the SUV, which is basically an uptake value of how much the areas 'lit up'. My MO says a bone scan would be redundant, but I know if I pressed he would get a script for one. I am waiting for approval from insurance for MRI to rule out bone damage/fractures ( please say prayer).
Also can anyone pipe in on the bone strengtheners? Pros/cons and your experiences? I know some are on Xgeva, some Zometa and some people are on Prolia..... I will ask MO his opion of pro/con of each of them tomorrow, but I like to hear from those who are experiencing in REAL LIFE.
I read this thread everyday and I'm wishing all an easeful day.
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good morning, everyone.
Welcome Msparks. I have bone mets in many places. My CT scan reports says that I have "diffuse mixed sclerotic and lyric lesions throughout the entirety of the axial and appendicular skeleton corresponding to diffuse osseous metastasis." It was not fun to read that, of course. I felt like I was pretty much one big met! The bone scan report has more specific information of the location of the mets as well as the areas that are most prominent. I was diagnosed in June. The good news is that the severe pain and lethargy that I experienced prior to treatment is gone. I am currently taking Arimidex and have no SEs. I will have my first Zometa infusion next week. I suspect that TMs will work for me since I had a sky high CA27.29 count of 947 before treatment. I hope to have a much lower count next week.
I am having trouble going to previous pages, but I think someone, maybe Valerie?, said she is going to start Zometa this week and would be well hydrated, take Claritin and ask for infusion slower than the 15 minute pace. I was also told that taking a Tylenol and Advil helps. I cannot take Advil, but I plan to do everything else recommended. I hope to have no SEs, but if there are any, at least they will be temporary.
I am continuing to walk daily. Today is beautiful here. The hot weather is gone, and it was a wonderful morning for a 3mile walk. I am hoping to walk another mile later today. We shall see.
Gaia, I hope that you are able to have the MRI so you have all the information you need. Knowledge is power.
Myra, The fall has always been my favorite season, but now that I learned the truth about mbc, I am not looking forward to October. I am hoping to look past the pink ribbons and hoopla and focus on the good weather and foliage. I don't fault the back "survivors" because most of them are as unaware of the truth of the disease as I was. I am happy they have been "cured"' but I am afraid for them, too.
I am sorry I can't address everyone individually. I hope that everyone experiencing pain finds relief, that those who are recovering from setbacks continue on that course, that those who have tests or scans this week have good results, and that those who are stable or seeing regression get better and better.
Lynne
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rnspark, I have innumerable bone mets everywhere - skull, spine, ribs, pelvis, hips, arms, plus 4 compression fractures in my spine, several 'old' rib fractures, pelvic fracture, had a pin inserted in humerus - but I think my mets are mainly lytic. I have alot of pain both nerve and bone but tbh I can't tell the difference, it's a question of seeing how I repond to meds. I'm finding things more painful these days but whether that's a response (I hope) to femara and faslodex or something more sinister I don't know.
Gaia0132, I've never been told the size or number of my tumors or whether any of my bone lesions were healing. I've got to stable (touch wood) and my scans basically say' multiple bone lesions, no change, stable'. I'm on Zometa, originally it was every month, now it's every three months. The infusion normally lasts twenty minutes and I usually feel achy for a couple of days after. I wouldn't dare ask to have a longer infusion in my cancer centre, I feel a nuisance as it is.
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msparki, I also have diffuse and extensive bone mets. Without pulling out a report for the exact wording, what 50sgirl wrote sounds exactly like my situation. In fact, I smiled when I read her post b'cuz our radiologists use the exact same wording (which does seem to vary from facility to facility), as if they'd probably gone to the same med school.
It's interesting to me that so many of us are in this situation, which I didn't realize until msparki asked the question. I guess I thought there were a lot more who had a met here and a met there, as opposed to the scattered and diffuse scenario.
Hope everyone's having a good weekend! I had a relatively "normal" day yesterday. Was able to accompany my hubby to an out-of-town board meeting, did some antiquing in that area (about 120 miles away), and wasn't too much the worse for wear & tear after a full and busy day, although I did sleep in this a.m. We're headed out shortly to look for some bedding plants (we're in SoCa, so coming off a hot summer and into planting season). So very thankful for ordinary days!!!
Hugs to all, especially msparki who came out of lurking mode, and others who don't post often! Deanna
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Gaia
Shopping was fun but expensive! I have lost over 20 kgs in weight since this began (much needed) so none of my clothes really fit - I was working my way back down the sizes as I had hoarded a lot of clothes but realised I couldn't carry on like that. So a spree was required - 2 coats, a dress and a skirt. Will probably also take a suit as well but ran out of time to try things on. Have spent today emptying closets of old clothes for the charity shop - no more hoarding! Need to lie down after all that
Good rest of Sunday to all
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All, happy Sunday!
Wendy thank you for your welcome. Now my turn to welcome Misparki!
Cheers to all the improvements in pain management and good results of scans (have to be general, can't go back to get the names)!
Misparki, I believe I also have very widespread bone mets. I so far have done two sets of scans (CT and bone scan for each set done by two hospitals reapectively ) since the diagnosis in the end of Feb. this year. They all just tell their own stories without commenting each other. So I have to treat them all as separated sections of the base-line imaging. Currently I do not have serious bone mets pain. But I do still have minor discomfort (a kind of mild burning sensation) mainly at the ribcage (lower sides). I used to have severe pain surrounding my lower ribcage, sternum, and right shoulder prior to my treatment three times. Each episode begun after a long walk. Then the severe pain subsided by itself after about 6 weeks every time. My only thoracic MRI taken last month revealed my T9 has deformity and shows mild compression fracture. So now I understood why I had the tree strange injury like incidences (I was very puzzled why a long walk would bring so much muscle pull like severe pain). It was that my T9 has fractured three times and got healed each time basically on its own. The repeated compressional fractures, or, the gradual compression, caused the T9 to deform. The current mild fracture shown is the remaining of the third episode which probably will not completely healed eventually due to the advance of the disease. So, my impression of the pains caused by our bone mats is that the mets on the surface of the bones more likely would not cause very much pain. Severe compression and fractures are the major reason for serious pains. Deeper, more eat-in lesions (lytic lesions) damaging the bones like knife cutting in probably also cause noticeable bone pains. However, the pain I understand belongs to the physical, substantial pain caused by the physical damages, which is simple and easier to manage. The field under the name of pain is vast and much more complicated and the complicated part is beyond my experience and understanding. So, my thinking here is worth only 2 cents.
I would assume MBC tends to spread in multi focal form, sometimes very tiny but in large number, if it is the latter, it is called diffuse. It is probably quite common to have both focal and diffuse bone mets at the same time (mine is in this group). It seems also common to have both lytic and sclerotic lesion types. Lytic lesions are the result of the rather aggressive cancer activities. If the offense of the cancer is aggressive, the bone has no time to counter but retreat, leaving a hollow to the cancer. When the offense of the cancer is less aggressive, the bones have the time to fight back by producing more of themselves, we have the sclerotic lesions present. Then the bone healing also takes the form of producing more of themselves. So the sclerotic phenomenon on the bone scan imaging could be both cancer lesions and healing. I was very much worried about my T9 compression fracture, because my onc decided not to do any immediate local treatment. I did ask for the procedures such as bone cement. My onc said the prognosis of the procedures for mets patients is not good. I have to guess it is because the damage will not stop after the procedures. Then the occasional dull pain surrounding the T9 became milder and milder. Now it is not really noticeable if there is any. I think I got my onc's reason. He probably assumed that my mets is not yet becoming aggressive, given it took 13 years to show themselves, so the bone might have the time to heal under the systematic treatment (I am taking daily Letrozol and monthly Zometa).
As for Zometa infusion, I had terrible reaction to the first dose (severe whole body shaking and shortness of breath caused by very high body temperature, ended up in the ER). Then my onc told me to take 2 Tylenol and 2 Advil together prior to the infusion and after every 6 hours for one or two days. I am doing that and free of problems. SE of Zometa for me is very minimal. Just some general mild ache in a couple of days after each infusion.
Good luck to the Zometa newbies!
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I forgot to mention that all my sscan reports also did not provide numbers of the focal mets, nor their sizes. I was not happy about that. I thought the bones cannot be that large to contain uncountablely many focal mets for the reader. At least they could say around a certain number of spots, and the largest is of a certain size. I think using word such as numerous should be banned for scan reading. The tests cost thousands of dollars, they deserve more attention and finer treatment.
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Hi Xavo
You seem to have a grip on some of the terms. Itoo think that there should be more standardized and specific ways of providing the report results. I may ask to have another radiologist read it, to see if the language could be more clear.
I think you are totally correct in wanting the reports to be handled in a 'finer' manner. Right there with you. basically my report described certain of the areas as 'large avid destructive' which I am thinking would be a description for lytic lesions....
I am in some fear while I await approval for the MRI because 2 of those areas are my R sacrum and the L3 vertebral body and Iam having shooing nerve pain since yesterday on the right side. Unfortunately, as a schooled massage therapist with lots of advanced anatomy, I am thinking 'bad thought's about compression.
I have ZERO bone pain, it's been just a moving target of something feeling of-was a weakness in my left leg for about two weeks and that has resolved and now it's this shooting pain...ugh
Thanks for listening
I truly hope that everyone is doing better today!
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Thank you everyone for all of the info and tips! You all have made this so much more bearable to get through! I really do love you all!!!! I finally had my 13 year old (Katey) show me how to load a picture. It was taken last weekend. The little guy is my grandson. 5 year old Wyatt!
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txmom: Thank you for your beautiful comment about my fiance's brother and wife not getting it but loving me the best they can. It made a huge impact upon me. So much so that I let them know that we would try our best to drive to their home (2 1/2 hours, one way) for Thanksgiving Day, after all. I was shocked and delighted when his brother responded that they were both excited that I was coming and would like us to stay overnight at their home so we could drive home comfortably the next day. Sometimes it takes someone else to make us see what was initially difficult to see. Thank you for doing that for me. Love and hugs, Valerie
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50sgirl: Hi Lynne, I forget, too, who it was who said she's starting Zometa next week. I wrote that I'll be starting Xgeva next week (next Wednesday) but actually I'll also be very hydrated the day before and the day of, and after, as well as taking Claritin the day before and day of, because I just read it can possibly cause bone pain. However, I'm hearing that many women who are taking Xgeva have minimal, if any, SEs.
For anybody who is taking Xgeva shots (AmyQ?), I spoke on the phone to my onc's nurse who will be administering the shot. She initially absolutely refused to talk to me about having the shot in my tummy because they NEVER do it that way and my oncologist only wants it done in the arm, and she said it's more painful having the shot in the tummy. I wasn't happy with the conversation--an hour later she called back, and told me my onc said it would be fine to give me the shot in my tummy. My question now is, can I trust this nurse to know what she's doing? She's never given an Xgeva shot there. And, she's not happy about doing it. I'm apprehensive now. I hope it will go okay. Hugs to all, Valerie
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Kendra--I have had xgeva shots for the last three years. I prefer in the arm only because I have had so many shots, it's kind of numb going in. I've had it in the tummy when I had a long sleeve shirt. Regardless of where you get it...make sure the nurse injects it SLOWLY! That will cut way down on pain. I've had a dozen different people give me the shot. It can be painful but it doesn't last long. Good luck and I hope it does the trick for you
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