Bone Mets Thread
Comments
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Tarheel, I'm so very sorry to hear about your hip pain. You too, Linda. The left hip is where my large bone met is and I too have a lot of pain, even though I had it radiated (primarily because I was at high risk for pathological fracture). I hope you can find the right pain relief combo. I do find some relief for sleeping using a body pillow - one of those huge U shaped ones. I think it takes a lot of the pressure of the hip. Swimming seems to help too. I"m at the beginning of what I fear is increasing pain in that hip over time. I'll follow that thread if you start it too.
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Linda and Tarheel...so sorry both of you are in So much pain!
I was having really bad femur pain a while back, and it too was from nerve impingement. Rads did help in that case. I'm now facing more bone progression myself, but can't do anything for it until we get the brain mets stuff figured out first.
Gabapentine does help with unrelenting pain, but be sure to get nerve tests done. It's used off label for pain, but is actually an anti-seizure med.
Keeping you both in prayer.
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Lita, thinking of you and sending you healing hugs. You are a bright light on these boards and I always love to read your posts. I'm saddened that you are having to deal with this but you just keep showing us what a beacon of strength you are!
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Lita, I am so sorry to hear the news from your MRI. My heart goes out to you and your family. You are in my prayers. We are all here for you.
Hugs, Lynne
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Dear Lita,
I hugely admire your ability to hold it together and face reality directly and immediately, despite shocking and heartbreaking news. I hope I can do the same when the time comes.
I did not research what you have tried in the way of treatments thus far, but you may know that the Ibrance-similar drug, Abemaciclib, which has activity on its own or in combination with AIs, made a big splash in the headlines because it has the unusual ability to penetrate into tumors within the brain.
Here is one link, but you can find many recent stories reporting the brain mets activity of the drug:
http://www.cancernetwork.com/videos-breast-cancer/...
Here is one clinical trial with many study locations: https://clinicaltrials.gov/ct2/show/study/NCT02308...
Not sure what part of the country you live in? It indicates that if you are taking AIs, you can stay on them during the trial
Recent data suggest that this drug should also should work even better in combination with immunotherapy, so I would ask your MO about that too.
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Also, here is a clinical trial going on at Memorial-Sloan Kettering in New York- you have to be ambulatory (ie not wheelchair) and able to take care of yourself to enter the trial, but because it is combining Abemaciclib with Keytruda Immunotherapy for metastatic breast cancer patients and is in phase 2, I think it sounds really worth trying, if you think you are up to it. We can't judge, because you have to go off current treatments to get into a trial, but on the other hand because the scan results shocked everyone, it seems you are physically stronger than anyone would have expected, and maybe could do this.
I can imagine hearing a diagnosis of weeks or months from death is beyond overwhelming, however there are individuals who have been at just such a late stage and ended up stable for a year or longer if they were responders to regimens that included immunotherapy.
Here is this trial: https://www.mskcc.org/cancer-care/clinical-trials/16-1507
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Hey LindaLou and Z, thanks for the sympathy.
Z, I can sleep some nights and others I am up till 4, or even all night. Melatonin helps but I stopped taking the melatonin temporarily so I could monitor the gabapentin's effect on me.
LindaLou I am sorry the radiation didn't help your hip. What sort of nerve tests are you having? I hate the cancer in my spine the worst, because of the damage it can do. I know your spinal tumors must be worrisome. I had radiation on my spine in two places, and I don't think it helped me. Only one place was painful, but they decided to do both areas. The nerve damage, some temporary and some permanent, was enough to make me never want radiation again. But my oncologist says even one dose of radiation could help. Maybe so. I get PET scans every 3 months so we know that my left hip pain is cancer pain. It's hurting worse because the pain medicine is not working, it's not that my cancer is getting worse. I had a good results from my PET scan in June; so good, I thought it might be wrong. Next scan is next week. I also have pain in other places, like my sternum, but hip is the worst. Just gotta get through the next couple of weeks and get my pain medicine sorted out.
I did start a new thread for cancer pain, which I put in the pain category. Y'all come on over if you want, those of you who are battling pain.
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Good afternoon ladies. Just sending support to so many who are needing it right now. Big hugs
I have had a great day ! One of those very very few I have. Ds2 on Church retreat and I get dss on weekends so it's just been ds1 and me. We have had some serious heart to heart conversations that he would never allow if ds2 was here. Got up early went grocery shopping so he could do all the lifting for me, then went to church together and watched the movie The Shack (if you haven't seen this I really recommend it ). Ds1 had told me over a year ago that he was ok with me dying because he just couldn't stand seeing me crying. Vomiting everyday with no relief. He wanted me to have relief at any cost. It hurt me bad but I never told him. It was his true feelings. I want him to be comfortable talking to me about anything. Anyway today he brings it up again and said he was so happy I didn't give up and quit because we could have missed all these great memories we have made:. Ex. I taught him to drive and now he has his permit , just dss's and me took mini vacation tis summer and had a blast plus so so many more memories. It made me thankful as well that I didn't quit because there were and are many days I just wanted to give up. Tomorrow we are going to country club pool with friend. They will have live band, free food and entertainment plus just hanging in the pool. I have never found a suit to cover my port so I would wear a t-shirt over 2 piece but I just don't really care anymore. My port and scars are part of my current story so take it or leave me.
Hugs
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Patty.
Thank you for telling me about your wonderful day. You have such a great relationship with your sons. I am also proud of you for how you are both handling the divorce letting each other have a good relationship with the kids. I think we've all seen divorced couples use the kids against each other. Awesome job on all fronts to get the best possible situation for yourself ... so you can have many more days like this.
Well deserved, and no accident.
>Z<
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Patty so happy to hear how well you and your sons are doing. It seems you and your ex have
your priorities right- your sons!
Sunday we took a private tour of the 2 hadassah hospitals in Jerusalem. My MIL was very active in raising money for them. We cried when we saw her name on the wall in both locations as a recognition of all she did. This has been an amazing trip. We fly home tonight. I do know how lucky I am to be able to do this cause we all know that things can change so quickly for any of us! So once again I repeat myself and urge everyone to do what you can while you can!!!!! Enjoy your families and friends and make lots of memories with them
Babs
Her name was Shirley Forst
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Hello everyone - I post infrequently but usually read all the time and you are all in my thoughts daily. But, with three kids (ages 14, 11 and 9) going back to school, dealing with an ugly divorce and a very heavy work load at my job, I have not read for several weeks until this morning.
I was so sad and stunned to see your update, Lita. My heart just dropped - much love to you; you and your family will be in my prayers. I am glad you will have the additional neuro-onc consult; I will be thinking of you!
I have had rising tumor markers the last three months (onc does tumor marker draw every month when I come in for faslodex and xgeva injections). I know tumor markers aren't always reliable and that others have had much higher numbers, but it makes me nervous to see them going up at big intervals each month (have gone from 37 in May to 405 in August; I was only at 88 when first diagnosed as stage iv last fall). I have scans on Wednesday and am more anxious than normal because of these tumor markers. I hate this stupid disease.
Happy to have today off work as I have lots of laundry to catch up on. So much love to all of you! Lisa
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Lemondrop, My prayers are with you. I will be thinking about you on Wednesday and will be holding your hand as you have your scans. I hope the results are good, but we will support you no matter what.
Babs, I am happy that you had such a wonderful time on your trip. I have enjoyed all the beautiful pictures and descriptions you have posted.
Hugs,
Lynne
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Scan results tomorrow. Am a little nervous, because I'm going to tell him about my headaches, vertigo and lightheadedness. All three! Hoping it's nithing
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Oh, Gracie!!!!!
I will be praying for you.
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Hugs to everyone dealing with scans. My scanse are coming up as soon as insurance approves. CEA rising so the possibility of progression is higher...
>Z<
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Gracie I will be thinking of you tomorrow and sending all my good mojo.
Babs I'm so glad you had a great trip, now you can go home and plan the next one.☺️
Patty so many folks end their relationships with a cancer diagnosis. Keeping the kids first and foremost is admirable from you both. I'm glad you didn't give up also so many memories still meant to be made.
Lemondrop try and not worry to much I always tell myself on my actual death bed (whenever that is) I don't want to think of all those good days I wasted worrying. So now I just get that stomach sinking feeling when I'm actually sitting in the office waiting on results. Good luck
I am hoping for a beautiful sunny day for everyone to finish up their long weekends with.
Wend
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I have scans tomorrow. My CEA rose over this past month. Not sure if that means dead cells or possible progression. Hoping it is the former. I'll know on Thursday. Good luck to all who have upcoming scans!
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Animal Crackers and Z, sending you both hugs. I have been lurking on this thread as I suspect bone mets are progressing. I have a bone scan tomorrow and see my MO on Wednesday. Last CT showed progression in my bones but I have sclerotic mets which makes it a bit tougher to assess with CT or bone scans.
Unfortunately I have been experiencing persistent pain in my ribs at the back of my right chest and pain/discomfort under my ribs. It's been getting progressively worse (started about three weeks ago) so getting hard to ignore! I thought I was going okay mentally but definitely a bit cranky and emotional so I guess it's preying on my mind.
Hope your scans come back with good news. Pat.
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Lita we are with you. Always. I cannot even imagine what you must be thinking, I posted some info on the Brain thread. Great that you are listening to another opinion.
LindaE thanks so much for sharing about Raewyn. How crazy is that?? So sudden?
Claudia – so when r they doing this darn MRI?
Cathy you know if you are up to it, even a smaller trip in a nearby city or state, could get your longing under control. You could feel that you went someplace and you saw something new.
Wendy how large is the tumor? It never decreased in size? For sure you will hear both sides to decision making. Some ppl want to have it out asap, some ppl are willing to let systemic therapy take it's route.
Wemma the story of Dani's life has been almost stable, when they find decrease they get very excited, not us, but they do try to push to stay on the same tx, the story being not to give up on tx fast because there is not really going back. That's what they told us. Even now she is on trial, and they are willing to look away even new lesions, nodules due to some decrease in certain areas and some stability even if minor. It's a crapshoot as e/o will tell you. If scanning is not a longtime off, it mightbe worth to push it through. It's a hard decision.
Lulubee you gave them wings and off they went. Look at all the work you put in, and now you are reaping the rewards, like it or not😉
Lindalou hope you are feeling better. This spinal fusion thing is a consideration at this point?
Babs much to be proud of. They help a lot of different people regardless of background. Thanks for sharing your trip.
Lemondrop waiting with you.
Gracie let us know how it goes.
Dani's scans came back in what they call a mix bag. Very mixed. Some lesions are stable, there are some new findings, the lesion in the lung that appeared in the last scan, now has extension, some are larger lesions, but they chose to go with the stable ones, and want to keep her on the trial. No rads are allowed on the trial, so these is a nail biting situation. It could be a good thing, but it's definitely a roulette, I am definitely not happy with the lung nodule extension, aside from the other stuff, but I figured if they are willing to continue…do I have a better answer? No. Her prior Onco moved over to Sloan also, and it seems that she didn't fire us, she is on board, so I gave in to their knowledge and hope for the best, scan again in about 6 weeks. And so it goes, scan to scan. Dani is not happy but we passed happy a long time ago, just trying to go through the motions and trying to get to a good scan.0 -
Hey MomATT. Thinking of you.
>Z<
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Gracie, Didn't you say that you started welbrutin(sp), that can cause those symptoms.
I am thinking of all of you having scans this week.
Hugs and prayers
Claudia
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Claudia, yes I'm hoping and praying it's something like that, but you know we worry about every little thing that happens that's different !
Lita, thank you so much. I hesitated to even say anything because you're going through so much. But please know that you're always in my prayers!
Thanks Wendy for your prayers and thanks momall!
It's probably going to turn out to be nothing and I will have worried about it for no good reason. But the lightheadedness is been going on longer than I've been on Wellbutrin.
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Babs. Awesome about your mil. You should be proud. Sorry your trip is ending. Iloved seeing your pics and stories daily like a vacation thru you. Thanks. Safe travels home
Ds2 got back from church camp and he stayed in the only cabin they found our bed bugs in the wall. Ugh. They bagged everything and I have to dry them on high at least an hour then wash sd redry. So that's what I've been doing all afternoon. It would be the son would takes like 10 changes of clothes for 3 days . Had it been my other dss he takes like a change of clothes for weekend. Lol. So funny how different they are. Kucojly no bite marks on dss
Momatt. Mixed bag indeed. Always keep you r and Dani in my prayers
Animal crackers. Wishing you the best at Mo tomorrow
Hugs to all
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Patty Patty what do you want so much?? A little peace??? C'mon, that's all you want. You need a break girl.
Z i just reread the post, i can't believe that you feel it's creeping up. Damn. damn!!!!!! Well let the scans come, so at least you will know what you are dealing with.
AnimalCrackers we will wait with you. Sadieserv what a bummer. Scan to scan. Ridiculous. Dani also has a lot of sclerotic lesions.
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sending good thoughts to everyone with upcoming scans and everyone digesting results.
Babs, I beyond happy for you to have had this time in Israel. And your advice is good! I'm trying to embody it. Debating between travel to Thailand or Italy next year...
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Dear Lita, I'm fairly new but I've been following your posts and I'm so sorry your time has been cut shorter than you'd hoped for. I send you love, thoughts and prayers and I have added your family to my prayers. I can see that you are surrounded by just SO much love and I'm adding my love to the beautiful pink love cloud enveloping you.
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Leapfrog. I like that :. Beautiful pink love cloud.
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Wendy3, I wanted to let you know that I did see your post about Chelle. Thank you for the news. I have been thinking of her and her family.
Momall, always thinking about you and Dani, I hope you see more positive results from this trial. My MRI is on the 24th. I am trying not to dwell on it. I am going to try yoga tonight tonight with my bc friends. I will only do what I am comfortable doing. I take it as a positive sign that I was able to ride yesterday with very little pain! YAY! I hate how this pain makes me feel mentally. Take care of yourself.
Jensgothis, how are you doing? Are you feeling any better? Are you finding any relief? Sending gentle hugs your way!
Hugs and prayers everyone
Claudia
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momallthetime it's down to about three centimetres from ten. I don't know what I'll do it's like every decision has such a major impact in our lives . I'm glad the onc is on board for Dani the more minds involved the better. I'm always happy Dani has you there for her. Remember to take care of yourself too
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Wendy thanks so much. That's a tough decision. With the tumor really shrinking, how could you know what to do? How are you weighing the decision?
I am so drawn to this board, it's like coming home.
Claudia yeah, that's how it goes, scan to scan. Fingers crossed.
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