Bone Mets Thread
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Rachel - definitely give your doc a call. It can take a few weeks for the rads benefit to kick in, and possibly you would be entitled to another round of rads on your painful hip. I had 5 rads tx on fractured pubic bone and another one time tx a few months afterwards.
So my theory on high blood calcium level causing a pain flare is down the drain. In fact, my calcium has never been so low (but within normal range). Good news. TMs are stable. The nurse made a mistake with my infusion this morning - instead of a 2 hour tx, it was a 30 minute tx. I'm not feeling well. Anyway, it's one of my favourite nurses - she felt so bad.
Annie - enjoy your day - sounds good!
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Rachel, speaking from experience, definitely NOT normal. The dragging, dead weight feeling you're describing is what happened to me as my fractures worsened. How long ago was your MRI or whatever test found the pelvic fracture? Are you absolutely sure you don't also have a fracture at the head of your femur? I'm asking because I think that's the one that caused me the symptom you're describing -- where eventually I had no muscular control over my leg, had to lift it up into bed, couldn't control it from rolling over, etc. So sorry you're going through this, but I'm wondering if another MRI might be prudent, to see what's going on -- especially if it feels like the lack of control is worsening.
Just got back from my local onc's office. My counts (thanks to Ibrance) are extremely low. They advised going forward with my next Ibrance cycle, but thank goodness I know that's probably not protocol, so I just emailed my UCLA onc. I've also gotten very forthright about asking for the techs I prefer, and it all worked out great today -- one stick w/a butterfly needle for the blood draw, and 2 painless Faslodex shots.
Will catch up on everyone else's posts later, but just had to jump on to weigh in on your situation, Rachel, because I'm concerned about what you wrote. Deanna
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Hello All of you beautiful women. I must apologize in advance that this post is brief and hoping to gain some insight for myself....
I will definitely be reading back further and having a better check in later or tomorrow!
So in glancing at Rachels post - and rachel I am so sorry for your discomfort and the crutch and the breathlessness; I noted that some of you more experienced ladies, Deanna, Linda and GG 27 weigh in to check in with he Onc re the ongoing pain/ache
I am just starting out my tx with Tamox and in 2 weeks start Herceptin ( praying all clear with MUGA- which I am now doing Friday)
My query is about these hairline fractures many are mentioning. To date I have simply had a CT/PET. I DO have a very achy hip were mets were revealed, nothing that advil doesn't quell, but more concerning and what I am relating to Rachel's post, is that the whole leg has suddenly become weak. I can't go up or down stairs unless it's "step by step" and I take longer to walk anywhere than I did just 2 weeks ago.... to be fair I had something similar pop up this spring ( before DX) in my right hip and it completely resolved after my mastectomy. And the re are No mets in that hip.....
any thoughts from all you wise ladies? And sorry to be naive but how are these fractures discovered? MRI? Should I request? I want to be as hands off with treatments/layering treatments as long as possible ( the marathon/ not a sprint) but I don't want to be foolish
Thank you for reading all this and I will definitely be checking in more deeply later
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Gaia - Did you have the same pain before starting Tamoxifen? and when was your last scan? If your scan is recent, you may want to ask for an MRI. Are you on a bone strengthener such as Zometa or Xgeva? Is this in your tx plan? Any new pain or symptom should always be checked with Onc if it lasts more than 2 to 3 weeks. Tamox or AIs can cause pain as well. My fracture (pubic bone) was seen on CT and bone scan at dx and is still there. Nothing can be done about it. Not the same for long bones such as humerus or femur or supporting bones such as hips. My met on femur required a rod insertion and screws to prevent a fracture because it was badly damaged and could have fractured in a matter of days.
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Just jumping in for a bit......
Gaia, I second what LindaE said. An MRI will give you and your MO and very definitive look at the hip. Is the going up and down stairs sharp pain or achy? You can experience very achy bones with the treatment you are on, especially if Advil helps that.
Rachel, Yes call your MO and describe what is going on with you. keep us posted.
Deanna, sorry your counts are low but glad you can move forward with your treatment. Some techs/nurses really know how to administer the shots don't they? I ask for the ones who do it well also. Will you stay at 125?
Dee, you make me smile.
Annie, you deserve a good day and hope that happened for you.
LindaE, I hope you don't get a bad reaction from the shortened infusion. We all have our favorite nurses don't we? Makes it harder.
A good night to all....hot and humid here, makes me crabby.
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Linda lou and Linda E thank you
I'll try to clarify. It's nit pain. It's achey It's been there on and off since July. Scan was Aug 18. It's just that late last week, before I started the Tamox, the leg feels weak going up/down stairs. I did call MO he seemed not too concerned. I am going to do a littlePT and discuss it more in detail with MO on 9/14 when I go in for Herceptin.
I am adding t'x piece by piece...Tamox now/ herceptin in two weeks and then I can discuss a bone strengthener ( he did say it's an option/I simply need to move a little slower) I have not even taken an antibiotic and very little pain reliever ( until recently) in over 30 years! so I want to allow the body to adjust. My main point is I want to gather info so I am smart in asking questions and requesting things. Does that make sense?
Thank you both so much for your response and I am taking NOTES!
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Makes sense and seems you have a good plan!
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I've had hip pain since December 2014 I think from the same bone mets I've had since dx. Since I have a PET CT scheduled for this month, I'm just going to wait but it is comforting to know two things; that Al's can cause the pain and that people don't die of bone mets. Believe it or not, that's what helps me to cope, especially on days when my hip hurts so badly when I get up from a sitting position, I look like I'm 90...no offense to 90 year olds -
Amy
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just took the last ibrance in the first round, labs Friday. Having a lot of hip pain and really tired all the time. It's fun just reading all of your posts. Marilyn
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Hi ladies,
A little less pain today. What helped was I set my alarm for 5:40 am, to take my Oxycontin, and then I set it again for 6:30 am, to wake up and start the morning routine for myself, 2 kids and hubby. After work today I got my 4 shots: 2 falsodex, 1 Xgeva, and 1 lupron. It's just too many shots. Do you think I can cut the Xgeva out for a few months? That's an idea I had Also wondering for anyone with bone mets in their neck bones, when you turn your neck do you hear a grinding bone on bone sound? I just started to hear this a few days ago with the increased pain levels. Restarted Ibrance 100 mg last night. 2nd dosage was today. Bloods were drawn today so let's see where my WBCs are. I'm sure I will be getting a call from my nurse tomorrow. Let's please hope I can stay on the Ibrance. I purchased a 100K life insurance policy today through work. It made me feel so good. I have a free life insurance policy through work which is double the salary (about 110K) but when I told the benefits specialist my story he checked with his supervisor who said I could be offered up to a 150K policy no questions asked. So in total about $220K for my husband and kids when I pass on, unless I go for the accelerated death benefit (need to have a doc state you will be terminal within 24 months). Plus they will get about $3000 from social security. I do feel good, like I'm really helping them by at least offering a little cushion for a few years. My DH will likely hire help for every evening after school once I am getting weaker and once I am gone. Yes, we have discussed this.
I hope all you ladies had a wonderful day and I love all the support I get here. Ladies with hip pain, Gaia, Rachel, I hope you feel better. Deanna, glad you are able to continue on Ibrance, my MO took me off so quickly when my counts went down, guess she's more conservative than your MO. Dee- that was a funny story. I may drink for my next scan!!
Someone on my FB group told me all the supplements she's taking and I decided to order on Amazon one she's taking: Zyflamend. Anyone have experience with this one? Thanks!
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Here's a photo of us from the recent trip to Beaches Turks N Caicos
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Fabulous picture Cristina!! Lovely family. I have no advice for your pain, I just hope you find some relief soon, cheers, Dee
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Beautiful family, Christina! I don't know about the meds you're on, but do know that Femara has accelerated my arthritis beyond belief. So it may be partly that? If it persists, I'd get it looked at. And good on you for doing insurance. I'm taking out a $100K policy which covers pre-existing conditions in 2 years and no physical required. It does kind of take a weight off to know you have stuff like that sorted.
Sorry not to address everyone; I'm hopefully recovering from the stomach flu. Ick. Nothing compared to what most of you are going through, so not whining, just tired.
Hugs to all,
Terre
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i know I'm terrible about not addressing everyone but I read your posts and I truly care. Thank you for the support. I have ct and Bone scan scheduled for the 10th and a referral being worked on for physical therapy in my town for all the tightness pain and limited tamer range of motion in my left arm. I followed your good advice I started taking ibuprofen regularly. Iv didn't have take any Norco for break through pain yesterday! I was so frustrated to take narcotics and still hurt! A dear sweet woman sent me s check support my gift tote bags for the chemo center. DH is going to take me shopping for fabric tonight! I am very excited! Hugs and love and peace to all
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Ladies is ibrance only for hormone positive?
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Good morning all,
Janet - sounds like a good plan to take your meds like you did and to stay ahead of it. And congrats on life insurance. I also have life insurance from my ex-employer as a retired employee and it certainly puts my mind at ease. As for Xgeva - not sure it's a good idea to stop as it is very helpful for bone mets and AIs affect bone density. That's just my humble opinion. I sometimes get a click sound in my neck where I have a sclerotic lesion (growth on bone) when I turn my head. Praying your blood is good. What a beautiful picture and family.
HopeFaith - Oh you seem brighter today! So happy for you. Good luck with scans and PT. Ibrance is only for hormone positive. Happy shopping.
Annie - hope you enjoyed the pool and BBQ.
Terre - Icky crap - get well soon.
That shortened infusion is really hitting hard on my system. Drinking a lot of water to flush this out. The nurse felt so bad that I was the one calming her LOL. She's so meticulous that I'm pretty sure she lost some sleep over this.
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Guys I think about you all the time, but right now I am truly lacking the energy to follow all threads.
I do wish you the best.
I would very much like your input: Pet/Ct showed extensive progression on the bones, I didn't think even there was more room for more progression
anyway, it showed progression on the LOWER LEFT ABDOMINAL QUADRANT. Anyway an MRI was ordered bcs RAD was concerned of encroachment in the spinal canal. MRI was done a wk later, and that report still specified progression and it detailed soft tissue nodule in that area, they use words like SIGNIFICANT increase in size and SUV uptake.So I kinda begged ONCO to find out what and where it exactly is. BUT she claims that it's in the left side so basically it's not in any vital organs, and she does not wanna send my daughter for more scans. TOO much radiation. Really??? This is someone that went thru just about all tx. She is getting her 3rd Kadcyla treatment on MOnday, that means 2 are done, we are just about 6 wks in, and these scans still show progression, shouldn't we be worried that it might not be working and waiting till end of OCT to see if it is working we are chancing this thing to actually invade the colon or who knows!! It was a Pet comparing to MAY, so from MAY they use "significant" I think we should pay attention to it no??? So I would like to know if you ppl would fight to get it scanned or just let it go. The truth what bothers me also, is that she did not even blink about it, i called attention to it.
We are going for other opinions next wk, but I am fuming with the laissez faire attitude from the Onco. She was MAD that I brought it up. I am being told by some other people that were on Kadcyla that they also had Perjeta with it, was a bigger punch, this Onoc refuses it. Any experience with that?? Anyone on Kadcyla now??
Thanks a million, looking forward for your opinions
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Good morning to all,
I had an amazing day yesterday and enjoyed every minute. We had a brief thunder shower that came through but within a half hour the sun was shining again. I spent a great deal of time in the pool which felt so good. I ate too much though but it sure was delicious, steak, potatoes, bean salad, cucumber and tomato salad and corn on the cob. All of my favorite things!
Rachel, I hope your hip pain is improving but I'm with the others, please get it checked out.
Dee, how are you feeling today? I'm sure you're much better, I'm still getting a little chuckle out of your story, thinking I might do that for my next scan.
gaia0132, Linda gave you some very good advice. How has the tamoxifen been treating you? Your idea of adding treatment piece by piece is a good one, also helps in knowing which side effect is from what treatment. When they're all introduced at the same time it's hard to decipher which tx is causing a certain side effect.
Linda, oh my goodness, a 30 minute treatment as opposed to a 2 hour one, I can only imagine what that did to you! So sorry that had to happen, I've had a few mistakes made so now I have no problem asking the nurses to double check. One time they started to hook me up to a 5 hour infusion, I noticed the cap on the bottle was a different color and mentioned it to the nurse. Right away she said thank God you noticed that, I don't know why the pharmacy sent this one.
Deanna, sorry to hear about the low counts, did you get a reply from your UCLA onc?
Cristina, your family is beautiful! Your picture brought tears to my eyes. I am glad you're getting ahead of the pain with your meds but as others have said I don't think I would cut out the Xgeva.
Terre, having the flu sucks! Wishing you a speedy recovery!
Marilyn, sorry to hear you're having alot of hip pain. Hoping your labs on Friday have good results. Join in anytime, this is a great group of women.
HopeFaithCourage, glad to hear your pain med adjustment is helping you.
Hugs to all, Annie
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Mommallthetime - My heart goes out to both you and Dany. So sorry the recent PET showed more progression. If I read correctly, the PETs are done about every 3 months? Which is standard to see how one reacts to tx, but 2 months would certainly not hurt. How about an MRI in the abdominal quadrant? And perhaps a biopsy of the soft tissue to see if pathology is still the same. So glad you're going for other opinions. With regards to Perjeta - that drug is for HER2+ only. Can't remember exactly, but I think Dany is HR+ and PR+ only? Anyway, just thinking outloud, but I would certainly insist on having a biopsy if feasible. Sending you and Dany lots of love and courage. You both are in my thoughts and prayers.
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Beautiful photo, beautiful family, beautiful beach, Cristina! And glad to hear your pain was a bit more manageable yesterday. Hope that continues!
Annie, I love hearing about those idyllic days in the salt water pool, and the bbq menu is making me hungry!
Momallthetime, I don't know what to think or say about your daughter's situation, except I know you don't have a lot of confidence in her onc, so I'm very glad you're going for additional opinions. 6 weeks may not be enough time to know if a drug is going to work. Have you checked to see if there's a Kadcyla thread here, to ask what others have experienced with that chemo? My other thought is the test Hope mentioned getting at USC, which, as I understand it, can aid in figuring out targets/meds when patients are drug resistant. Here's a link: https://www.guardanthealth.com/guardant360/
Linda, I'm so sorry that infusion mistake happened to you! Wow, what a lesson to us all to be aware of what's going on, and to speak up, even if we think our question might be foolish or come across as overly controlling. My UCLA onc confirmed what I already knew from the Ibrance thread -- that my counts were too low to simply continue it. So I'll have a CBC again on Tuesday, by which time they will have hopefully rebounded. But just another example of the need to read and be our own advocates.
gaia, I think you're wise to introduce one med at a time. I was much like you -- never ever did pharmaceuticals until bc. But I have to tell you, after realizing that being natural did not prevent my bc, I have relaxed a lot and learned to embrace the meds that work for me, while still using an integrative approach wherever I can. But I know it's a tough switch to make when it conflicts with very deep natural beliefs.
So sorry you're dealing with a stomach flu, Terre. Feel better soon!
Hoping we hear from Patty and more from Hope soon. I'm concerned about them both.
This week is flying by. Hugs to everyone, especially those not specifically mentioned this time. Deanna
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is anyone on faslodex and zometa? And does it cause shortness of breath?
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Rachel, I am on both Faslodex and Zometa. I have not experienced short of breath.
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Rachel, I had my Faslodex shots yesterday, and I am feeling short of breath, along with a mild headache and lots of all over achiness today.
Here's the list I checked to be sure all could be chalked off to the Faslodex. http://www.rxlist.com/faslodex-side-effects-drug-c...
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I am on both faslodex and zometa... I've only had two treatments so far but both times I have had muscle pain and weakness across the chest. I don't like it... it makes me feel like I'm short of breath but I think it's caused by the muscle pain.
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Hey guys,
So today my nurse gave me the results of my tumor markers. The thing is we were using one kind of tumor marker and apparently they don't use it anymore! So now they tested me this month with a new tumor marker but we have no basis of comparison! I'm so frustrated. I'm not talking about the CEA, that's 26. I'm talking about the one specific for breast cancer. Does anyone know more about this? Which one is phased out and which one is what everyone is using nowadays and what is the "normal" range?
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Christina, I believe most oncs use the CA27-29, and some also use the CEA (UCLA does). The one that's not as popular might be the CA15-3.
With the CA27-29, up to about 36 is considered to be within normal range, but most women with mbc will register considerably higher, depending on how active or controlled their bc is. It's more about comparing it to your previous readings -- not anyone else's -- to determine how you're doing. My most recent one (a month ago when I started my new regimen) was 298 -- up from 75 just a few months before. I'm still waiting for results from the one I had yesterday.
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hi all
This thred goes so fast. It is comforting to hear from so many women dealing with. a similar struggle.
cjanet. So sorry to hear you are struggling with pain. One of my favorite pain management techniques is a well timed nap. Your life looks so busy and full from the beautiful family picture. But for. me at times a one hour nap in the late afternoon (at times with half a pain. pill) gives me the energy to be with my family in the evening.
HFC no need to apologize. You give so much to this thread, I understand the days you have less energy. Good luck with your scans. I have recently started phyisical therapy and it has been very helpful.
momallthetime Sorry no wisdom for you. Just wishing you and your daughter peace. This process must be so difficult with out a MO you trust.
Marilyn I hope the Ibrance does its job to reduce the cancer . i hope hip pain resolves. Heating pad at night on my hip helps me to sleep.:
Amy good. luck with your scan and with your hip pain.
gaia I very much relate to your post. I dislike the pain but really hate the worry related to the pain. I ask. my doctor tons of questions and when more worried I will talk to a nurse in between appointments. Good luck to you
Wishing everyone a good friday
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Good morning all,
Cristina - My Onc uses the CEA and the CA 15-3. I remember at the beginning, the CA 15-3 methodology changed. My TMs were always within normal range (go figure). The CEA range is 1 to 3 I think, and the CA 15-3 is 1 to 23. That's here in Canada, maybe different elsewhere, don't know.
Good luck with blood results.
Still feeling crappy from infusion and fell last night coming back from a short walk with my dog. Luckily, I fell on my good hip. Kind of twisted my ankle, put ice immediately. Barely swollen this morning and I can walk on it. Sore throat with bad cough as well. Will be a very quiet day.
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Aw Linda, feel better, sorry for the fall.
Deanna, thanks for the clarification on the CA 27.29 and CA 15.3. Based on what you said, I think my CA 27.29 is in the 60s. My CEA is 26, well above normal. So that's that. I have no other CA 27.29 for comparison as this is the first one, so we'll go from here.
Feeling ok today, not great, not awful. Some nausea, some pain. Will have a family over tonight. We are ordering out so should be easy. And they know I'm sick, so I can always lay down while my husband talks to them and the kids play.
3-16-2011- what is your name? A nap is a great recommendation and I did do that yesterday for about 30 minutes.
How are people's pain levels today? Nausea levels? Poop levels? Etc.
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Cristina you make me laugh...Ok, per your checklist....Poop level..never good. I swear the Sandman and Poopman, and migraine man have left me in the dust! Nausea and pain under control for now. Glad you are doing a bit better today.
Linda E. Oh no! You have certainly hit a rough patch. Rest easy today and catch up on some movies.
Deanna, hope your counts will be up next Tuesday.
My MO has changed my regime a bit. I will still get my Faslodex shots next Tuesday and then I will get Xgeva 2 weeks later. I had such a bad reaction to Zometa the last 2 times that we are giving Xgeva a try and stretching it out a few weeks to help with the constipation and SE's.
My question is.....where is the best place for Xgeva shot? Abdomen? Upper arm?
Linda
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