Bone Mets Thread
Comments
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Good luck with your treatment Annie. I know how you feel about the not knowing. I just try not to think about it. I am currently working on trying to enjoy each day. I will try to cut back to only 2 days work a week. I don't know how long I have, but I don't want to spend it working. Hopefully I have a decade or more of enjoying each day.
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Hope all goes well today, Annie! I'm thinking of you and sending positive thoughts for an easy infusion and much easier (none would be great!) SEs! (((Hugs))) Deanna
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Annie, my first pamidronate infusion was horrible too. But it got better. Onco told me to take a tylenol before bed to help with the bone pain. Now I don't bother, but I do feel a little bit flu-ish the next day, just a bit achy & tired, sometimes a bit of a headache. But it's better than the alternative. Good luck! GG
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Hi girls! I'm back and what a long day. My veins decided to play hide and seek today so that made things a little tricky. After 5 minutes of poking and prodding around one vein (2 nurses), it finally co-operated. Unfortunately a few minutes after that I felt a little faint! No worries I didnt go down but I was very much a whiter shade of pale. Nothing a cold cloth and some orange juice couldn't fix
.Linda thanks for sharing your experience with pamidronate. I am hoping the se's after this one will be less than the first. My onc tried telling me it only happens with the first infusion. GG thanks for the tip with the Tylenol, I am going to try that tonight.
Dunesleeper totally agree with your post! I am trying to keep myself distracted, some days are easier than others. I would have to agree with you on trying to cut back your work week too. And here's to another decade of enjoying each day! I pray that happens for you, positive thoughts!
Deanna thanks again for your well wishes and positivity, I'm hoping for no se's too. We shall see how I feel in the morning.
Now about my left arm! I'm a little upset he failed to mention it showed something in my last scan. He tried covering his butt by saying well we discussed multiple areas. And I said ya but not my left humerus which I had told him was painful. So now he sent me for an x-ray cuz he's worried I could have a fracture or that we may need to radiate it! Seriously from now on I'm asking for a copy of my scans. I have to call him Monday morning for the results. I hope there's nothing major wrong but it is pretty painful. So I've only had 2 infusions and been on letrozole since September 4th. Just wondered when I might notice some pain relief?
Wishing you all a great weekend and thanks for all your support!
Annie
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Hi Annie,
Glad your infusion is done with! My first one was awful and then they got better. Somewhere on these boards a while back, I also read that taking a Claritin (or similar) before the infusion can help. Also, hydrate, hydrate, hydrate. I have wonky veins too, so it's always a challenge.
Hopefully they get your arm pain sorted quickly! If it's radiation that's decided upon, it will likely get a bit worse for a week or so, then you'll start feeling relief. Alternatively, they should give you some form of pain reliever that helps! I am assuming you're in Canada...I'm in New Zealand which has a similar health care system, I think. I was able to switch to another oncologist. I had to pay for a private appointment for the second opinion, but it was sure worth it as he agreed to take me as a public patient. And it's night and day difference. It's your life that they're playing with here so you really have to be your own advocate. When I switched MO's, the new one asked if it bothered me that I might hurt the other one's feelings. I told him that frankly my dear, I don't give a damn (about the first one's feelings) because my life is what matters, not some doctor's ego. Harsh, but it's my reality.
Take good care and hugs to all,
Terre
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Good luck with the arm xray annieoakley. I'll be praying that there is no break. I would think your medicine would be working by now. My arimidex reduced my pain very quickly. I guess I started it around the same time you started letrozole. I am getting monthly injections of xgeva rather than infusions, and I only had one of those so far.
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Hey Terre, nice to hear from you! Well I didn't exactly bitch slap him with a drumstick but he knew I wasn't impressed. He is the head of oncology at a major cancer centre and I do trust him but geez how did he miss reporting that to me?! I took your advice and making sure I keep hydrated and GG's advice at taking a Tylenol to reduce the pain from it. I really wish I could have the Denosumab injections but our ins company will not pay for it unless I've had a failure first with pamidronate or zoledronic acid. It's obvious that the Denosumab is the most expensive of the three. And Terre your assumption is right, I do live in Canada.
Dunesleeper you say that arimidex reduced your pain qukckly and that is great, glad to hear that! My pain is not as severe (except for my arm) but not completely gone. Makes me worry that the letrozole isn't effective. God I hate this uncertainty and waiting game. I guess I'll have to see what my tumor markers are when I call him on Monday for my x-ray results. Feeling pretty tired now so I'm signing off and hoping to wake up without too much pain.
Hugs to all
Annie
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Hey Dune - glad to see that you seem to be feeling perkier!
Annie - I take Letrazole and trust me - no pain relief from it at all. However, I've been stable on it for almost 2 years. So don't think that the pain means it's not working. My pain relief is from pain relievers and the radiation I had when first diagnosed. The Letrozole causes the majority of the pain, which keeps me in a bit of a freaked out state. My MO is very patient with me and quite proactive so that when I am freaking out and whining because my bones hurt, he gets me a bone scan. I'm slowly learning through experience and reading these threads that some of the pain is in typical spots where Letrazole makes people hurt. Like my hands, knees, hips, and back. The Celebrex equivalent I take helps a lot. However,while I'm sore, it's like an arthritis sore, not severe like you're describing in your arm. Hope it's not a fracture and that they get it sorted out soonest!
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Good morning to all! Well I'm happy to report that my second infusion was not as bad. Other than the usual aches and pains I wake up with it is nothing like the first time when I could barely move and felt fluish along with a bad headache. Maybe it's because of the extra hydration (thanks Kiwicat) or the tylenol before bed (thanks GG). Whatever it was glad to be feeling reasonably well!
Hey Terre! So you mentioned letrazole didn't do much for your pain either. I'm not happy to hear that but it makes me feel bettet knowing it still kept you stable for two years. And yes I'd have to agree that letrozole is causing the majority of my pain. I didn't feel achy like this all over until I started it. I took tamoxifen for almost 2 years and had no side effects. But then again it didn't exactly work for me did it? So back to my arm, it's not a constant pain but when I try to use it oh my God the pain is brutal, I hope it's not a fracture too.
So can I ask you all a question? My first bone scan on June 10th showed the spot in my sternum that was suspicious for metastasis. The MO said mets occur in more than one spot so thought it could be trauma from my mastectomy. Follow up scan September 3rd shows three more areas. That scares me alot. Is that alot of progression or is it possible to have been there 3 months earlier and just didn't get picked up by the scan? I've had this pain in my left arm since May, before I even knew anything was going on. Sorry to ramble, just trying to make sure I know exactly what I'm dealing with.
Wishing you all a great weekend,
Hugs, Annie
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Annie, So glad that this infusion was better for you. When I have my infusion, I just take a tylenol before bed, whether I need it or not, I don't know. My nurse has told me that hydration is very important for your kidneys, as they can be damaged by the pamidronate. So drink, drink, drink, before & after.
I can't help you with your last question, but I'm sure someone will come along & help out. Are you getting tumor markers done? CA15-3. My bone scan is showing progression (is probably not) but my tumor markers have gone from 60 down to 14 (yesterday) I've had my markers done every month since May when I went on arimidex. My onco told me with bone mets it doesn't really matter if you have one or five, if you have them, you have them. I think she means if they respond, they should all respond. Hope everyone has a pain free & fun weekend! Cheers, Dee
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Congrats on the lowered markers Dee! Whoo hoo! We're not sure if my markers "work"; they've been stable, but so have my mets and since my original MO didn't look at them, we don't know what they were pre-Femara. They don't work for everyone. Glad yours do!
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Thanks KCM, we don't know yet whether my TM are working or not. My bone scan came back showing progression. But because my TM were consistently lower each month, several of the women here think that the radiologist that is reading the scan can't tell whether the bones are progressing or healing (which apparently look very similar)
I have an appt with onco on Wednesday to find out the whole story. DH & I are crossing our fingers. If the news is good we'll be celebrating with an Indian dinner at the Bengal Lounge in Victoria..... mmmmmmm....
Dee0 -
gg - I hope you celebrate big time.
As far as tm my mo says it is not a science yet. Just a tool they are trying. He said the actual number doesn't mean much it was only to watch the trend. Down was good and up was worth doing a scan. Mine were consistently down for a year but the last times they wre up slightly. From 40 to 62 to last month 71. We did bone scan and ct scans. All showed stable and a few even shrinking. I still only have bone mets. (Who knew a little over a year ago I would be happy to say JUST bone mets ). My mom died of this stupid disease 3 years ago. At one time during treatment that was successful working her tm were like 30,000. Crazy huh ??
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Good luck on Wednesday, Dee!
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Happy Sunday all. Mom often makes waffles on Sundays, so I woke up to the smell of waffles. Of course, that made me have to have one, er um, four. I better do a lot of moving today. LOL
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Dune I love waffles but haven't had them for years! Sure sounds like you enjoyed yours.....all of them!.....lol.
Happy Sunday to you and Happy Monday to me.....I'm off to my regular checkup with my doc!
Love n hugs. Chrissy
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Happy Sunday to all! Wow a gorgeous fall day here. Hubby and I just got back from a nice nature walk. Dune it sounds like your waffles were delicious
. I love to make belgian waffles and I have to say I do a damn good job. I have made them for many of my daughter's friends so I've got a reputation for making the best waffles. I also make banana sour cream waffles and they're amazing. Making myself hungry!Dee good luck on Wednesday! I'll be thinking of you. You asked about my tumor markers. My CA 15-3 came back at 29 which is good. My CEA came back at 1.4 which is also good. However my CA125 came back at 129, should be less than 35 so it's high. My MO said this is the one we'll use to follow the trend. I always thought that one was used for ovarian cancer but apparently it's used for breast as well. I'm not sure what my markers were after that, those were done in June and I didn't ask what my September ones were. Tomorrow I will find out what my most recent one from last Friday was. Always makes me nervous, I want to know and don't want to know. Dee I am feeling positive about your results and hoping you get to celebrate with that indian dinner, sounds yummy!
PattyPepper, sorry to hear about your mom, it must make going through this a little harder for you. Glad to hear your scans showed you were stable and may it continue that way for a long time. I lost my mom to brain cancer the month before I found the lump in my breast. It was hard not having her to help me through it but in retrospect I think it had to happen the way it did. I took care of her every day until she passed away and if I had found out before that I guess I wouldn't have been able to care for her. It's not like I neglected my health, I had my mammogram just months before with the all clear. I even had a breast exam during my physical just 3 months prior and was told all was well. We really need better imaging for this horrible disease.
Chrissy good luck tomorrow! May all your news be good news.
Well time to start supper, I'm craving waffles now
Hugs, Annie
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Hi Ladies! Thanks Kiwi, DLB and AnnieO for your thoughts. I wrapped up the rads and the first round of chemo, and it knocked me flat on my arse. When I went for round 2 of chemo, I was sent home because all my blood counts were below the minimums! No wonder I was so wiped out! I'm officially bald, but with all that I have going on, hair is the least of my worries. Right now, I'd trade hair for energy. I'm wearing the "buffs" that were suggested on another thread, on my bald head. I may get a lavender wig (why not have some fun with it) and only because I can't stand pink! Hope everyone is having a good weekend!
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Chrissy, you're in my thoughts tonight. Hoping you continue to get nothing be great reports from your onc.
And Dee, prayers that you will also get good news on Wednesday! I know it's been tough having to wait to talk to your onc to get his reading on things.
Sorry about the low counts, Skylotus, but glad the rads are behind you, and hopefully you'll regain your energy and up those blood counts with some rest, nutrition and TLC.
Patty and Annie, I'm so sorry to hear about both of your Moms. And Annie, I think if your onc continues to leave you with so many unanswered questions, I'm wondering if you might think about getting a second opinion? Has your onc ever mentioned biopsy-ing those suspicious spots -- to be sure of what you're dealing with, including hormonal status. And remind me what they're doing about your arm. Did you have x-rays? A scan? I'm concerned because of the degree of pain you described having.
Terre ~ Speaking of pain from Letrozole... are you taking curcumin? A few months ago I had suggested to my hair stylist that he try it for his occupational type arthritis pain -- mostly in his fingers and knees from standing all day -- and when I saw him last week, he couldn't stop thanking me because he's now totally pain free. I'm on Anastrazole, and I don't have any joint pain to speak of -- which is kind of surprising for my age and all I've been through, including years of skiing and then recently that hip episode, and I think curcumin may be the reason. Anyway, just thought I'd mention it, in case you aren't already taking it.
Have a good week, everyone! Prayers going up and fingers crossed for nothing but good news from everyone! Deanna
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Hi Girls! Thanks for you good wishes for good things with my doc. I reported to him that I am really wiped out all the time so now we are on the hunt for the reason behind my sleeping twelve hours and still wanting more.......not quite normal so I'm told......lol. For starters a couple if vials full of blood for a few tests and he has ordered a sleep study for apnia to rule it out or in whatever the case may be. I'm guessing if the bloods are good and the sleep test is good I will be heading for the scans. Keep your fingers crossed that it's something simple.......
Sky sorry your blood was so low that you couldn't get your 2nd chemo but maybe it was a good thing so you could have a bit of a rest.....you sure have been through a lot of late. Hoping that you are feeling better for next week!
Patty and Annie sorry about both your moms.......really rough for both of you to do the nursing and then be dx yourselves........now that is just not fair!
Annie your onc sounds like he is either what we call 'gung ho' meaning he is all fluff and no substance or he is not doing his job......he needs to keep you in the loop as to what exactly he is doing and why and he also needs to listen to you. If you are not being kept in the loop, get a second opinion or question your present onc and also let him know what you want from him.
Deanna I have been doing curcumin for years and really count it as one of my best friends.......it sure does aid in keeping the arthritis pain under control as well as aids in the control of the SE from Femara.......I really couldn't do without it!
Hope you and Terre are doing okay.
Love n hugs. Chrissy
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Chrissy, I hope everything goes well for you - keep us posted. Terre, I also take curcumin regularly and it brings a lot of relief. I take curcumin supplements with a meal with a lot of pepper and a bit of olive oil. The combination of the three boost the anti-inflammatory effect of the curcumin. Linda0 -
Happy Monday all. It's a frosty morning here. I'll try to think of it as invigorating. It might be a perfect morning for oatmeal. Definitely not waffles. I may try to do without lunch at work today. Anyway best wishes for good results on all your scans and blood tests this week.
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chrissy, what about low thyroid? Could that maybe be what's going on, especially since you thankfully don't seem to have any new aches or pains? Or is possibly one of your meds to blame? Just thinking aloud...
And Dune, thanks for the frosty morning image, which gave me a vicarious feeling of fall, since I live in the desert, where temps alternate between hot and hotter -- never frosty.
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Deanna, that's one of the tests that was ordered so I think my doc is on the ball. I sure will be happy to find out why!
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Hi Girls, still waiting for the results of the x-ray I had on my arm Friday. Put in a reminder call and still haven't heard back. I'm hoping no news is good news.
Chrissy and Deanna I feel that you both don't have faith in my oncolgist, and there are times I feel the same. Deanna you asked about a biopsy of the suspicious spots and we did discuss this. I was told that it yields alot of false positives. When the first spot showed on my sternum we discussed biopsy and this is what I was told. Also that it's extremely painful and could possibly spread the cancer. I'm going to get alot firmer with him and demand answers. On Friday when I left he told me to remain calm and not to worry about my treatment, that if this didn't work there were many other options.
He also mentioned how when my scan is repeated that even if there is healing it can look like progression and that there is both a science and an art to interpreting these scans. I am definitely going to be more demanding.
Chrissy when Deanna mentioned you having your thyroid checked I thought to myself yes that could be what is behind your tiredness. I just had mine checked for that very reason and guess what, it came back low! Best of luck to you.
Hugs to all
Annie
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Annie, it's not that I don't have faith in your onc. It just seems that he leaves you hanging with unanswered questions. Some women may be okay with that. I would not be, and you don't sound especially satisfied with his communication gaps either.
As far as a biopsy yielding false positives... My local onc had also told me the same thing -- that he didn't see the need to put me through a bone biopsy. My UCLA onc, OTOH, told me that they would pick the least painful spot (based on my MRI) to biopsy because it would be important to both of us to know for sure if it was mets, as well as hormone status . As it turned out, I had that fracture that required surgery, and they were able to do the pathology on the bone they removed, so a biopsy wasn't necessary afterall, and it may not be in your situation. I'm just sharing this experience because for a long time I questioned if I even had mets or some crazy autoimmune thing going on (I was absolutely in denial), and getting that bone pathology was helpful in accepting it and moving forward, as well as knowing we were dealing with ER+ bc again and not possibly something for which the A/I I'm on would not be the right tx. Deanna
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Hmmm, my experience with bone biopsy is limited to my own. The spot was in my upper femur. I was pleasantly doped up on Versed and a painkiller, so I felt nothing during or after the procedure. I was told the biopsy was to confirm what the imaging indicated and to verify hormone status. If I didn't have a biopsy, would they have called it a bone met based on imaging alone?
Caryn
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Annie, we all deal with our docs in different ways........I like to have all the answers and have input as to what treatment and why as well as conversation on what scans and why and what those scans show and how it going to effect me.......I am indeed a nosy girl and had a huge melt down some time ago with my doc and threatened to sack him if he didn't stop treating me like a mushroom, you know, kept in the dark space and fed bullsh*t? and that I had the intelligence to understand all of this stuff. He gave me a really funny look and wrote to my GP that I was a little 'upset' at our last meeting but, and this is the best part, we now converse on all things pertaining to me and that makes me happy.
If you are happy with your onc and his attitude to you that is all that matters but if you aren't then you need to let him know.
I have never had a specific biopsy except for the original dx. I did however need to have a pin inserted into my humerus and I'm sure a sample was taken at that time but I didn't know about it.
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Hi Girls! Well so much for no news is good news. My onc called with my results. A hole in my left humerus. He said I need to see a surgeon from oncolgy about stabilizing it with a pin and that it should be radiated as well. Chrissy I'm nervous, can you give me some encouraging words? My girls and hubby are so upset
.So I asked him why the bone scan didn't show it is a hole. He said bone scans are better for osteoblastic lesions and a plain old x-ray shows osteolytic ones. I asked about all 3 of my tumor markers to which he replied they've stayed pretty much the same from June til now. I went from 129 for two months to 137 which he said is not too much of a jump. He said if they were any higher than that he would have been considering a more aggressive treatment. That scared me so much. It worries me with my MS, I don't know if my body could take it. I need letrozole to be a cancer kicker for me for a long time.
Deanna and Chrissy and all of you who commented on my onc and maybe how he wasn't giving me all the information, thank you because you gave me the voice to speak up. I am a very well informed and detail oriented person and he's not going to get away without answering all my questions anymore! He got a taste of that tonight when I drilled him with 20 questions. He answered every one, and patiently I might add.
Well I'm feeling a little stressed and tired. I am so worried about this surgery. I've had 6 in the past 2 years. I just wanted some smooth sailing, but then don't we all. I guess I have to look at this is another bump in the road.
Good night and hugs to all,
Annie
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Deanna....Yes chemotherapy can kick the endocrine system around. When I was diagnosed last Nov. with MBC mets to the lung I was seriously fatigued...extremely lethargic. My PCP was treating me for pneumonia then after hosp transfer and admin.admin, an astitute endocrinologist drew a cortisol level to determine adrenal involvement. The cortisol level was 1.0. Normal is over 10. The cortisol/adrenal situation was managed with careful steroid addition. Gadzooks! After I stabilized in a week the surgeon was able to go ahead and visualize my affected lung and send pleural biopsy to pathology. That was a year ago and now after endocrine follow up my cortisol is 25 and I have been on Herceptin and Faslodex for 10 months. We still are undecided re mets to the bone....CTs and MRI say yes but PET scan says no...so a bx seems next...oh boy but need a definitive answer. It is great to be back to a university hosp setting .....those Resident docs are always on the search to come up with those hard to decide diagnoses and are super to have on my team
Deanna, glad that your situation and treatment was appropriate for you...yay! Peg0
