Bone Mets Thread
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momallthetime,
I asked him why he thought it was er/pr positive and he said that it was because that's what it was at the outset. Not a great answer under the circumstances. Since my mets are innumerable and small perhaps they can't do a biopsy? I will need to ask that question on my upcoming follow up. We will be taking blood to see where my markers are.
Micmel,
Well, I thought the pain in my lower left side at the bottom of my ribs and below was going away but not really. When they do the ultrasound of my uterus etc I am going to ask for a sweep of that area as well to see if there is something else going on. Just had a pet/ct a month ago so that's not an option.
I have my appt with the gyno today to see what the mass in my uterus is all about. I believe it's the same thing that was there before - a fibroid. Since I was on the patch before I was diagnosed in 2011 the hormones caused a thickening of the uterus and an enlargement of the fibroid. Once I was off the patch and was rechecked everything had shrunk. My former gyno/onc put me on the Estring because I was so dry and atrophied it was painful for sex. I have chucked the Estring and I think that's what caused the uterus and fibroid to once again thicken and enlarge. I must be very sensitive to Estrogen.
I have only just begun this again and am already tired of this crap! I have never been at all patient with anything that slows me down or gets in the way of my being Wonder Woman!!! LOL
Chats
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Patty, so glad to see you posting again! I hope and pray things get much better for you.
Babs, great to see you too! Thinking of you this week! The days my kids got married were the best!!!!
Ok I didn't say anything because it seems like I complain and complain and complain! But day before yesterday I took a really nasty fall in my hallway I got tangled up with my German Shepherd. Down I went I scraped up my knee is real bad and have been having pain on my upper back on the left side and the left side of my skull. I went in yesterday I got my shot of Xgeva and wasn't feeling too bad. But the nurse gave me that shot within like five seconds and it was done she gave it to me really fast! So last night after midnight my upper back started hurting in the back of my head I couldn't even lay down because I couldn't put any weight on the back of my head it hurts so bad! So this morning I called my oncologist nurse, explained to her what had happened. She talked to the oncologist, and called back and said there is a possibility that it could be from the Xgeva, or that it's just pain from the fall and jarring everything. So I have heat on my upper back and the back of my head, and she said if it got any worse to go to the emergency room and have them just do an x-ray to make sure nothing was fractured! If it's not one thing it's another !!
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Gracie~OMG!!! I am so thankful you didn't hit your head and end up unconscious. You poor girl. You watch those headaches, just in case you have a concussion. I am so sorry you are having such a hard time. You don't deserve that. I can relate to the dog entanglement thing , when it's too cold or raining, I jog inside my house around the downstairs. Maybe he thinks he working out with me but it's annoying. Then there is the other dog following him. It's quite a sight. Then one will just decide to lay in the middle of the floor. Please be careful. We have all obviously been through enough!
Hands Gracie a strong pina coloda with the prettiest umbrella ever!!!! 🍹🍹 deep cleansing breaths. Keeping you all close in prayer. ~M~
Chats, fibroids are awful and painful. I am also having some back side pain so I know how annoying it feels. I have been extra active this week, so I am really moving muscles and working out like I haven't been in over a year. Perhaps I'm just getting old and my body is yelling at me. I hope you find out the answers you need to be pain free again. Sending big hugs
~M~
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Wendy, I have read up with what he would release about the deal with ibrance in Canada, i guess you fall into the public availability sector, because you're no longer on the trial. Have you called other oncology clinics to see if they have official acces to the medicines yet, i get it through a specialty pharmacy here in the us. My onc set it up himself. Call around ask start asking questions to find out the availability released in your area. It is sounding like you are in one of the areas that have multiple active studies still in phases and coming to conclusion . I am going to ask the project manager how many phases these are actually running. If it was phase three that could be close to completion. Which could be a good thing as far as releasing to the public, that meet the medicines guidelines, if you're receiving letrozole, it should be seamless. It's just a matter of the trial being concluded. I'm going to see if I can get the answer of the conclusion date is at least close ? Maybe he can hint me into a general idea. He is very limited legally of what he can say about an active trial. I'm still not above begging. Think about you and this situation everyday. You're in my nightly prayers. All of you are!
Patty ~ I hope you're feeling better everyday. Rest well and stay strong! It is very nice to meet you,and I am glad you're home for the hospital.
~M~
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I have been feeling like crap the last few days and have finally cried Uncle to Arimidex. I have been on Arimidex for 7 months, the first few months were okay but the last 5 months have been painful. I can no longer stand the joint pain, back pain, night sweats, and fatigue. I spoke to ONC earlier this week and she has written a prescription for Letrozole (femara).. I have been reading the many post on the SE of Letrozole and now am nervous that I trading one evil for the other. Either way I need to try something else so I am taking the plunge.
Ronnie
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Ronnie - letrozol can be just another form of trouble. I hate the stuff and, as you can see, Wendy could live without it as well. but people do respond differently to different drugs. many people tolerate letrozol with zero side effects. trying a different hormone suppression strategy is a good idea. at stage IV you must be on some kind of hormone suppression, unfortunately. hope letrozol is a breeze. if you read the Femara thread you will see that people have different strategies to deal with the side effects. I swear by curcumin, which also has anti-cancer properties.
Patty - I see you popping up all over, worrying about others, makes me so happy. hope all is well.
Gracie - what a terrible fall. you MUST aggressively address pain and complain about it vociferously until a solution is found. pain effects the mind and body terribly. this is the place to bring your complaints against your onc, the universe, cancer, your symptoms. don't hold anything back. it's what we're here for and it's important to talk about these things. we all have too much on our shoulders to bear by ourselves. don't hesitate to go to the ER, or just urgent care, if you are not improving. let us know in the morning if it interfered with sleep tonight. sleep is critical.
>Z<
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Chatswood I take the Femara brand now and are having less aching in the morning I also take a low dose Targin and endo morning and night and I take 2 meletonin tablets at night and now I sleep really well . Ibrance is still at trial stage here in Australia but most of us on Femara (Letrozole) are doing really well with tumour markers going down and bone progressionslowing or stable for a long time. I also take Chinese medicine and have acupuncture and that works really well relieving side effects tiredness and energy levels . Good luck with it all judy
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Gracie- that was a scary fall! I had a much less dramatic one about a week ago. It was sort of slo-mo where I got tangled in a blanket I had over my legs. Soft landing and no harm. All I could think was "do I have answer yes 'yes' next time they ask if I've had a fall". I decided -no.
Yours was much more serious. Do follow up! Some of our parts are quite fragile.
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Kaption, You made me laugh when you mentioned that "Have you fallen..." question. I wouldn't answer yes either. I am always afraid they will pack me up and haul me off to a nursing home if I say yes. I mean, come on, people fall! I hope you are still feeling okay.
Gracie, I hope you are recovering quickly from your fall. It is a terrible feeling to feel yourself going down but you have no way to stop it. Of course "they" say just relax and you won't be hurt as badly. HA! Who can relax at that point?
Patty, It is good to hear from you again. I read on one of the threads that you were planning to go to an estate sale. Did you find any good bargains? I love good deals and sometimes think that I have a secret hoarder living inside of me. So far I have fought her back, but sometimes I think she is going to get the better of me and I will wake up to a house full of clutter.
Ronnie, I hope that you feel better on letrozole than you did on Arimidex. I have read that brands can make a difference and some people have more SEs from the generic form of letrozole than from Femara. As you can see above, Delvzy is one person who sees a difference. I have no personal experience with it, but you might want to file that information away, just in case.
Chats, you really are going through a lot right now. I hope you have answers soon and begin to feel better.
Wendy, it is always good to hear from you. It sounds like you are jumping through hoops and still not getting Ibrance. That really stinks. How are you feeling?
Babs, I am thinking of you today. That wedding is only days away. You must be super busy and excited. I am excited for you. I can't wait to hear all about it and see the pictures of that wonderful day. I don't know how you managed to get everything done in that short period of time.
Hugs from, Lynne
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thank you everyone for thinking of me ! I did get some sleep last night I took a painkiller and I think I was so tired that I just knocked me out! I am a little better today not as much pain but kind of lightheaded and I don't know if it's because I'm not moving around much or if it's because of the fall. Makes me think about whether or not I'm going to be able to keep this dog because that was pretty scary! You kind of expect that when you get old that yu might not have any animals around because they might get tangled up but gosh I didn't think it was going to happen this soon! Thank you all for your prayers and your thoughts.
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Opening day is right around the corner. Giants mascot Lou Seal and his new bunny friend, Graymond.
I will need my stuffed friends as comfort when I start radiation again. MO will have RO call me next week to schedule the sessions. Back pain and upper thigh pain/numbness getting worse....
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gracie - wonderful! Watch your sleep. When you cannot sleep you have a problem... if you are sleeping okay you will get better bit by bit.
Z
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These are the Susan G KOMEN tulips I bought a few years ago to honor friends with BC. And now they honor ALL of us who are fighting the beast.
Stay Strong!
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Lita~. Those are beautiful! Have a peaceful weekend ! Everyone rest well! ~M~ I will be keeping you in prayer as you deal with that radiation. I hope it helps your pain.
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Linda I know you mentioned ribociclib in another post, but what's going with you that you were interested for yourself? D is coming along.I don't like her Markers, they are going up and up. Her ALP is inching up, but i have to hold myself to the ground, and see if we could wait it out a bit and hopefully give this Trial a chance to do something.
Chatsworthgirl that's an absurd answer after such a long time, so it could have changed. And I am sure after a Pet/CT or MRI they could get at least one measurement from all these innumerable mets and even try a blood test. You are so right, nobody got time for this, that's for sure. Re: the Fibroid, do they take it out? My sister had this done a couple of times.
Aww Lita so sorry, but look at the company you got. Rads can't come soon enough for you.
Gracie this was quite a fall. I could just imagine the dog's face! Take it easy.
Let's hope for a quiet weekend to everyone, just looking at the rain, rain....
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i jusr was diagnosed with bone mets. My er and pr status says negative. My iruginal diagnosis was positive. Can this be a mistake. Has anyone had this also. I have no energy and feel bad x 6 months. Is that from cancer or depresssion. Bad hot flashes still. Thanks in advance for any hel
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Welcome to the new faces here!
Mel, was your current status determined from a bone biopsy? If so, they are notorious for surprising with negative results. It has to do with the bone degrading process, which, if done too fast, can easily lose the positive quality of the sample. When done correctly, the process takes something like 6 to 8 weeks. Not saying that's what happened in your situation, but it's something to ask your onc about and get clear on -- especially b'cuz being ER- (IF you are) will greatly impact tx choices, as I'm sure you're aware. As far as not feeling good, that could easily be from either of the reasons you mentioned, or a combination of the two. How recently were you re-dx'd? And are you on any meds now?
Beautiful Tulips, Lita! And Gracie, I'm glad your fall wasn't any worse than it was! It's scary to realize what might have happened.
I have an update on Carol. She called this morning and is still hospitalized, but doing a lot better. They found something that's helping her pain, but the dosing still needs tweaking. She will need some radiation in the near future, but all in all, she was in much better spirits than the last time we spoke. I conveyed everyone's prayers and concerns.
Thinking of you, Babs, and very much looking forward to wedding photos!
Have a good weekend, everyone. I'll be doubling my Xeloda dose and hoping nothing weird happens. Deanna
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Deanna, Thank you for the update on Carol. Please let her know that I keep her in my thoughts and prayers.
Lynne
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Moma, I'm having more spine/ lumbar/hip/ pain. I see MO next week and he said he will order some scans. I have progression but it is slow growing, so we briefly discussed ribociclib which I found out I can't take. What trial is Dani on? I think I missed something.
Lita, the tulips are beautiful. Go Brewers!
Thanks for the update on Carol, Deanna.
Lynn, did DH have his surgery?
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Ronnie - my first go-round I was on Arimidex. I took it for a year and a half and it almost killed me! I just quit. I didn't want to be in so much pain and be so unstrung for another 3 and a half years. I took my chances. So far - knock wood - the Letrozole does not seem to be so bad. I have been on it a month so we shall see.
Delvzy - do you think the Femara brand is better? I was given a generic made in India. I was taking one 3g tab of Melatonin but I will up it as I have not been sleeping very much. I switched the Letrozole to mornings but that doesn't seem to be helping. Good to know that Letrozle is working for you and others. I have hope.
Micmel - the pain in my lower left side just under the ribs and sometimes extending around the back a bit seemed to be going away but I picked up a case of wine and carried it up a couple of flights of stairs from my garage to my kitchen and lo and behold the pain got worse. I am wondering if I pulled a muscle or tore something when I was working out in the garden doing a lot of grunt work. Or, there is the matter of the mets. I looked at the CD of my pet/ct scan and it's really hard to read the darn thing. It does appear that I have mets on the lower part of the ribs. I will be talking to my onc about this on the 26th when I get my bloodwork. I intend to ask him to explain to me why he thinks the mets would be the same ER/PR as the original bc.
However, it is my understanding for the most part that the mets do retain the original hormone status. So I would suggest that melmcbee get a second biopsy because it seems a bit unusual from what I have read. I know that it does sometimes change status and I certainly want to be sure for myself as well.
Momallthetime - The fibroid that I had in 2011 never bothered me and it was not removed. It was the pet/ct that picked up "something" that couldn't be identified as cancer. The report stated that it was most likely a fibroid and the thickened uterus was most likely due to the hormone therapy. So I had a vaginal ultrasound and the gyn at the time poked around and felt it - had his doctor in training poke around and feel it also (Ah yes the humiliation of the stirrups LOL).
After a period of time he rechecked because I had quit the patch and it had shrunk. Weird thing is that he was the one who prescribed the Estring even though it actually states that if you have uterine fibroids you shouldn't use it. Jeez. Anyway, the current pet/ct picked up almost word for word the exact same situation and said that due to the current hormone therapy it was most likely the cause (all my records are seen by everybody so they knew I had been using the Estring.) I am actually considering getting my uterus and ovaries out so that I can use an Estring because without it I will dry up like a prune in the desert heat!!
Lita - I love that little dude hanging on the big mascot!
My visit with the new gyn was not thrilling. I found her to be brusque and not very interested in listening to me. Although the pet/ct report said to do an ultrasound she instead was trying to sell me on doing a D&C. Sorry, not interested. If I am going to go to the hospital and be anesthetized it will be to have the parts removed. She was another doctor who appears to be on the in&out burger routine. Volume, volume. NEXT... I refuse to be treated like I am part of a production line. Sorry but I need some decent bedside manner if you want my business.
Chats
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Dlb823 i just read my pathology report. I havent talked to onc yet. I have an appt with him Tuesday. I am very scared about possibly being hirmone negative. Thanks.
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Mel - What Deanna said about incorrect hormone status from bone biopsies is dead on, of course. Press your oncologist on this. Ask about circulating tumor cell tests (looking at cancer cells in the blood not the bone). You don't want to be treated for the wrong thing. Bone mets generally move slow and if that what is going on you have time to sort this all out.
Hormone negative mbc does have treatment, however, it is different than hormone positive. gotta get that pathology report right ...
>Z<
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Thank you ladies. I will see him Tuesday.
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Yes, great detective work micmil!
Gracie, if we can't complain here we are really alone! I'm so sorry about your fall, darn pets! Hope you don't have a concussion...Remember to stay very hydrated. In either case it should help with the lightheadedness. The Xgeva has really made my bones and joints hurt too, and Ronnie I don't think the Arimidex helps either. Going to get Claritin in the morning.
kaption and lynne, I wouldn't say yes either LOL! (Unless I suspected brain mets or something) I Love estate sales and was a minor hoarder for awhile. Just the thrill of the find I guess. After this move I got rid of a whole bunch of stuff, but will probably still go poking around this summer.
yes Lita, thinking of you and the radiation. Hope it takes away the pain and numbness. Love your "lovies" there. I am a Giants fan too. I lived in Hayward for about 10 years in my younger days. My whole family is in the Bay.
Deanna, thanks for the update. I am soooooo glad Loves is feeling better. Hope the upper dose of Xeloda is fine with no weirdness for you.......
I'm with you on the bedside manner stuff Chats. If you can't show interest in me as a person why would I let you gamble with my life? You might have to give up the "Superwoman moving boxes of wine" stuff for awhile huh?
Lindalou, Hope the scans are good news and the next tx kicks it to the curb.
welcome milmc, We will be following to see how you are doing!
Babs, Have a FABULOUS weekend in NY! Lots of pics!
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we had the Mikvah Thursday night and tonight the Shabbat dinner. DD fiancé is religious but we're not at all. So interesting. I wasn't allowed to take pictures tonight but I did manage to get one done
1-DD and close friend
2/ Me and fiancés Mom
3-All of us- his 5 sisters friends and Moms
4-Shabbat dinner-daughter in the middle
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Babs, The pictures are beautiful. Such wonderful memories.
Lindalou, I hope your scans show good results. If you are like me, you are already reading about what the most likely next line of treatment will be. I do that every time I have a scan. I guess it is my way of dealing with the stress of the situation. I figure that it's best to be informed, even if the info isn't needed. Yes, my DH did have surgery last week. Thank you for asking. I must say the the experience couldn't have been more different from last year's horrific saga. Surgery went longer than expected due to all the scar tissue from last year, but it went very well. He left the hospital 4 days after surgery, 2 or 3 days earlier than predicted. He is doing great, no more jaundice, no more vomiting. He is strong and pain-free. I couldn't be happier.
It is still snowing here. I think we have about 10 inches of heavy, wet stuff. Is it really April?
Hugs from, Lynne
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Babs, beautiful pics! Your daughter is just gorgeous! Thanks for sharing 😊
Lynne, so glad your husband is doing well! That's a blessing for you.
Artist, yes am hydrating...that did occur to me that I might be a little dehydrated, but it didn't change much, but will continue to drink lots of water.
Thanks to you all for your continued kindness and concern. It really does mean a lot to me as I'm alone so much of the time. It's nice to have someplace to come to and to be heard.
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yes, great pics babs! I love seeing "true life" pictures of the people I've "met" here. That is such great news about your DH lynne, what a relief that must be for you both.....One piece of huge stress take off your shoulders must be like 100 lbs of weight relief. I t has finally stopped snowing here for a few days! Actually sunny today although still chilly. Just no slippery sidewalks is great!
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Bab. Absolutely planted a huge smile on my face., you're beautiful and it makes me so happy to see such smiles. Holding you all close in prayer ~M~
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Babs just amazing, you are such a troublemaker. You know your daughter is like your twin. And, I noticed that smile never goes away. Love, love the pictures. Awww what a beautiful time. I am so so happy for you!!!! Can't wait to hear how it all went. You are gonna have a great time!! Thx for sharing.
Lynne oh my gosh, what a relief for you and your husband. How wonderful you over it.
Lindalou so sorry for the progression. Yep the scans should give you an idea where you are at. D is actually on a trial that has worked for TNBC, IMMU 132, but from what I understood Onco thinks her thingy is so complicated and could actually be heterogeneous, that's what I learned from Zarovka, Z I hope i got it right, and Z explained to me that's why it could maybe work for Dani, so far her numbers are giving me anxiety, but I am trying very hard to wait a bit and see if it will steady.
Melm all I could say to you is that Triple negative is not what it was a while back, there are many new treatments.
Chatsworthg you are so right about the bedside manner. I have so many stories I could really write a book. The Gyno you would be looking for should be a OncoGyno. There is much to be said about doing an oophorectomy if I may say, in your case for sure, you would not have the fibroids problem for one and your treatment could be different. You would have to put up with the SE's. My DD had it done in her late 20's. For me it was horrifying but we were told it would be best for her. Who knows. She had it done laparoscopically and she was out and about in just a few days.
Everyone take good care,
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