Bone Mets Thread
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Sorry to be a downer here but mine came back after 25 years!! Yes, you read that right! 25 years. I probably just made a whole lot of women scared to death but that's the reality of it. The years in between were great though. All 4 of our children got married and gave us 10 fantastic grandchildren and my DH and I have been married 56 years. I've had a good life and it's not over yet. We're planning a trip to Italy in the fall!
Faith (in the future.
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Great post Faith, thank you! Lita I am glad your shoulder is feeling better, you crack me up! I've been having some terrible shoulder pain, Am hoping it is just all the working on the house and a new 25 minute commute. (Gripping the wheel too hard?) Need a week off of Spring Vacation to rest it up and see if that helps. Caption, that had to be so scary hearing of a skull met. But many women have had them for years and keep treating them into submission. Wishing you the best! So nice to see both Lulubee and Patty. Two tenacious women there! Babe, we are ALL excited to hear about the wedding!
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Hello, Lita, you are so right. I was supposedly "cancer free" for 19 years! Now, mets to skull and spine. Like you, I believe it just lays dormant, lurking and waiting to strike again!
Diane
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Yes, me also. I was 9 1/2 years out, thought maybe I had it licked, no such luck. Was first diagnosed in 2007. Did the Mastectomy, and chemo and five years of Arimidex, which wasn't at all horrible for me. Then within one years time of scans, there they were. Absolutely sucks!!!!
Patty, posted yesterday but the post disappeared somewhere. Wanted to say Hi and you have been on my mind, so glad you popped in. Prayers continuing for you
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Thank you Lita. Although I didn't really want to be back with this kind of news, I am grateful always for this forum and the kindess and assistance of the members.
Although my default protective shield is humor, I have my dark moments... One of the things that I would like to know from others with bone mets is this: I had pain in my leg joint and some minor pain under my left (former) breast. The odd thing was that after the Pet CT results I suddenly had pain everywhere. I am on Letrozole and it seems to be worse sometimes than others. Per the scan I have mets around my lungs on the outside and now I feel pressure on my lungs.
I have only been on Letrozole for 21 days. Does the Letrzole cause more pain?
I really don't get why I suddenly felt all this pain when prior to the scan results it was not so bad. Was I ignoring? Am I nuts?
Any guidance or info on this would be greatly appreciated.
Kathy
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Chatsworthgirl-- Yes, we definitely ignore pain, or reason it away. I know I surely do. I will stay resolutely in denial that my hip or my spine is uncomfortable, and then when a scan pinpoints the hot spots and essentially rips the denial away from me, I have to admit that yes, I have been hurting here and there for a while but doggedly looking the other way, so to speak.
And letrozole can cause discomfort. Oh yes.
But I suspect something else is happening here. If you've just started on treatment, it's very likely you could be having some tumor flare, where the drug is hitting the spots and doing its job. Die-off can cause considerable pain! So I would encourage you to mentally frame that as healing pain and visualize the letrozole running through your body with a stun gun zapping all the little buggers till they cry and die.
Hang in there. Letrozole is powerful stuff, and I predict in a few months you will be in a better place.
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Welcome to all the newbies but sorry you're here.
Chats - I had a nice long run of 3 years on Femara. The answer is yes, Femara can cause pain mostly in joints, bones and muscles and can cause stiffness. For me the pain kicked in very quickly after starting Femara. Try to move and walk as much as you can and don't hesitate to take pain meds. You're not going nuts lol! Turmeric and boswellia helps with some of the pain.
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Unfortunately me too... I was diagnosed with Stage 1 on 1/29/08. Went through 6 months of Chemo, and 3 months of radiation. In 2015 my ONC said I was cancer free and could go back to yearly mammograms. I was in a car accident March of 2016 and hurt my back and hip. After 5 months of physical therapy my hip was not getting any better so the my doctor scheduled a CAT Scan.The reason for the hip pain was bone lesions in my leg, hip and sacrum, cancer had came back Stage V...
Many of us had early DX of BC only to find years later it had spread to the bone..The yearly mammogram doesn't detect this, so why isn't there some sort of tests to monitor early metastasis?
Ronnie
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Kathy - Letrozol causes joint pain. It is notorious for this. It is interesting to check in on the Femara thread from time to time and see what the side effects are for people who are just on hormone suppression. The joint pain can be severe. It is in my case.
Stress can also cause joint and muscle pain, so that may contribute.
The key to managing the letrozol and stress induced pain is to keep moving (gently) through pain. Walking, yoga, aquatic exercise classes are all good. After a while I have worked up to running, but not the place to start.
I am NOT sure that exercise is always the ticket for pain caused by bone mets. I only have one healed met to the sternum so I don't know about joint pain caused by cancer.
Welcome.
>Z<
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Hello all and thank you so much for the info and support and very positive thoughts. Makes me feel like I might make it to 95? Hey, why not.
I have been visualizing my killer T cells devouring the cancer cells. I saw a video of the actual process that takes place with the cells - think The Blob!!
Good to know that the Letrozole is making me hurt more - what a weird thing to say! But true. My big concern was that the mets were getting bigger and spreading. No way to know until you get another scan.
Zarovka, I do agree that moving and exercise will relieve some of the pain. I am doing a lot of work in my garden and I am going to start cycling now that the weather is better. We had some serious rain here in Chatsworth, CA and it was pretty cold. But now the rainy season is over and getting 70 degree days.
My biggest problem with not moving is that I work as a legal secretary three days a week and sit the whole damn day. I have been getting up and walking the hallways just to get some movement.
It is really a drag that so many of us have to go through this again. I was just getting used to not thinking about this crap and having some fun with my husband. And I had my hair back to normal... Vain I know but my hair thinning was really a bummer. I have been using Biotin and NAC throughout this time and added Rogaine for women about a year ago. It really made my hair thicken up. So I intend to keep on with that program because one of the side effect of these freaking aromatase inhibitors is hair thinning. Just another prezzy from bc thanks so much (sarc).
Kathy
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Hi All
Wanted to share pictures from my daughters party in Paris. Her fiancé is of Moroccan descent so his family made them a surprise Moroccan party tonight. She's the one with the biggest smile ever! The baby is his nephew.
Babs
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Babs - Lovely! What an amazing story this will be!
>Z<
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Babs...Moroccan food is really good.
Chats...check with your dr b4 starting any type of exercise. I have extensive spinal mets in both the thorax and lumbar areas, as well as mets in rib cage, pelvic bone, hip bone and iliac and psoas musclues. MO does not want me to do anything strenuous because the cancer has already given me FIVE compression fractures in my spine, and FOUR in my ribs. She doesn't even want me to do physical therapy.
Hopefully, your mets aren't as bad as mine, but still check w/dr first.
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Babs she is so beautiful and looks so utterly happy. 😊
Kathy welcome and I'm in the same boat with the letrozole day thirty yesterday . I find energy level is sunk and so far no joint or muscle pain just shortness of breath a bit.
Wendy
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Babs, she's beautiful and looks incredibly happy! The baby is gorgeous...those big etes
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Hi ladies, you are such an inspiration, and truly what friends are meant to be. Thank you for being there.
Babs this looks as so much fun, DD looks great, counting down the days, good for you!
Chats sorry you had to join, hope this treatment will knock this thing down.
So, finally Onco called in the afternoon, and i tried my rock scientist head, I had the questions ready to go:
First she mentioned Taxol, then another treatment with be a trial with Enzulatamide or the one Onco prefers the IMMU 132. I thought Taxol she already had, we know it's a tough one, the 2nd choice would not be at her Center, and the 3rd she was involved with for TNBC but could be promising for advance stage IV., loss of hair included.
I kinda agreed to IMMU 132, it's a 3 hr infusion, 2 weeks, one week off. So it's pretty much gonna be a whole day affair for her, which she is not happy about. She would have to wait 2 weeks to get the last treatment washed out. Which worries me very much due to ascites, but there is no choice, Onco thinks her lung nodule and everything could get better with this.Of course they are going blindly, and what am I doing? I feel like I am taking her to the slaughter. She depends on my research, on my opinion. What can I say? It's just that so much has gotten worse, that I don't know if we have the flexibility to play around, but which is sure? Even if she goes on Taxol, do i know? Should i go with a more familiar tx like taxol? And I really hate these 2 weeks with no treatment.
If that's the path, then next week she has to spend a full day having pre screening, also, her HGB is low, for this trial it has to be at least 9 or 10, it has not been there in awhile, so short of blood transfusion, let's hope that by not being on any treatment maybe it will go up.
I did not tell her about the ascites or the nodule in the lungs, maybe with time..., PCP and Onco agree. She will be examined, if she complains then maybe we'll tell her, she doesn't like to know much, i hope she does complaint if she feels something. I'll put hubby in charged of spying how she is doing.
I shall be copying this and posting in my other threads, sorry for the doubles.
Maybe this could be helpful for someone else also. I wonder if anyone ever heard of this...Zar thanks for the links, but it's not with Carbo.
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I am on Femara have been for 14 weeks I take mine at 9.30pm so it doesn't affect me during the day. I wake up very stiff and sore in the morning and have a sleep every afternoon after work . Can anyone tell me whether compression fractures can heal in spine? I walk daily do weight lifting rehab and run for about 10 mins twice weekly on a treadmill. Running in the road makes my hip sore. I am trying to find out if taking Dim is ok with Femara but can't find any studies can anyone tell me?
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momall,
Again, my prayers are with you and Dani-and your whole family- as you continue to make these hard decisions. You are amazing! But, know we are all here for you.
On the exercise with bone mets- my experience is that movement is very important but we must listen to our bodies. I had to stop all but the very basic yoga stretches. I've even had to slow my walking pace since the iliac and femoral neck issues that have come up in the past year. MO wants extreme care with even moderate exercise. Stuff breaks!
It is extremely important to not sit too much, but critical to listen to your body. Our group here has a wide variety of exercise abilities- just know what you can do.
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Thanks Kaptio
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momall, really sorry you and Dani are going through all this. I did Taxol, but it was dose dense every two weeks. It kicked butt on my cancer. That was however my first go round with cancer almost ten years ago, and our recurrences are different. I don't know much about the other treatments yet. But am still praying for you all, and will continue to do so until Dani is doing better. Sending you all big hugs!
Two days ago my right jaw started hurting. I was hoping it was a fluke but this morning it hurts...a lot. It doesn't feel like its coming from either the top or the bottom, but in the joint. Thank goodness I already have an appointment on Tuesday with my MO. It would just be beyond ironic if this was ONJknowing that that is the same side my brother lost half his jaw to cancer!!!!!!!!!
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Babs,
Beautiful pictures!
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Wendy, interesting about the shortness of breath. Me too periodically. It seems that when I am lying down I feel pressure on my lungs and then after a bit it subsides. When I get up it generally goes away. According to the scan I don't have lung mets but mets around the outside of the lungs. Also a small amount of pleural effusion that the Onc did not even mention to me so apparently its not severe enough to warrant any treatment.
Gracie, the joint in my left jaw was hurting prior to the scan. Nothing there. It may have been caused by something I did, clenching my teeth - I have a habit of grinding in my sleep - and especially if I am stressed or sleeping some way that put pressure on that joint. Until the scan I was also fearful that it had gotten into my jaw. Prayers that your jaw is fine.
Lita, I will be careful. Right now I am scheduled to see another Onc. I was not happy at all with my former one when the scan was done and he was so casual. On the scan I have something in the endometrial area that is unknown. I suspect it's a fibroid that was discovered first time around but the scan said to have an ultrasound. He never mentioned it. When I read the scan I called him up and asked him about that. He said I should see my gyno. Really? Then why the hell didn't he tell me that at the outset. And, he seemed annoyed by my questions and that I was taking about three minutes of his time. So on to a new Onc. It's a female so we will see.
Kathy
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Kathy thanks for that info...am hoping it's something simple. Good luck with your new onc! That's how we found my breast cancer..they thought I had ovarian cancer...went in for full hysterectomy to find out it was fibroids but wham...guess what? Wasn't ovarian cancer but breast cancer!!! Was almost relieved though to hear it wasn't ovarian!!!!
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Babs, Your daughter is beautiful, what a smile it is contagious! Looks like everyone is having a great time.
Thank you for posting,
Ronnie
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Gracie - Xgeva is the drug that can effect the jaw and I am not on it. However, I have had a lot of jaw pain and clicking since my diagnosis. We've looked at it every which way and, in the end, it's just a place I hold stress. We're not in a great position and there is a lot to worry about so the idea that we must "let go of stress" should not become another point of stress. However, when I watch people present with symptoms on these threads, I often suspect it is stress.
You can also learn to relax your jaw with attention and weird mouth massage that many therapists can teach you. Take extremely good care of yourself and check in here when you are down. We're always ready to lift your spirits and throw you back in the ring ;-).
Kathy - Good luck with your new onc. There is no perfect onc, but you should expect thoroughness and a professional exchange. It's good to have a second opinion onc, if only to get a bit more time to discuss your situation. I find the time I have with my onc way too short even though she is otherwise okay.
Delvzy - I don't know what Dim is, but you have an awesome exercise plan. With bone mets you have to be careful not to push your range of motion. While yoga is hugely helpful for joint pain from letrozol, you need to dial it back as Kaption has explained.
>Z<
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Thank you all for the compliments on my DD. I've never seen her happier. It makes me feel so good to know she's this happy and with someone who adores her!!!
The wedding is exactly 3 weeks from today!!!!
Babs
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Thanks Z! You always make me feel better! All of the women on here have become a wonderful resource of support and info!! I've been so blessed to have you all in my life
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(Copied from the Live Doesn't End with a Stage IV Dx thread...)
My daughter has given me permission to post this final exam documentary project that she did last year in one of her classes. She wanted to document my struggle: http://www.micaenglandphotography.com/work#/metavivor/
We are now collaborating on her final portfolio. During her winter break, our family spent a few days in Joshua Tree, where she photographed the landscapes I love so much. She has also been photographing my body and the changes the chemotherapy has made, all in black and white. Will post those when we're finished.
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Lita it's extraordinary. How much courage for her to document it. So much for you to be proud of. And thank you.
Gracie I know you waiting on those tests. Hope you get back the results soon.
I am still having to make the final decision, but it's hard when there is not too much communication with Onco, they can only talk to you a minimal of time. Tomorrow I will try different approaches.
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Go Mom! The truth is the onc gave you 3 reasonable options. At some point you will just know what is best for Dani.
>Z<
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