Bone Mets Thread
Comments
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hi everyone,
Good luck with your scans. Wishing good news for everyone in the new year!
I recently had a brain MRI that came back negative for metastatic disease. however, my bone scan showed areas on my skull? And I have two small masses in my scalp that were also biopsied and they came back metastatic
not sure why the MRI didn't pick them up. Not sure what scan to believe and My MO didn't seem to have any answers either.....sigh
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Geez Gracie - I'm sorry about your daughter. Don't even know what to say...
Amy
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Thanks, Amy. Not at all sure what's going on with that. We have always been fairly close, not as close as some, but reasonably so. My thinking is that she's pulling away big time. I think she's scared, and she will not ever talk about things with me, or with anyone else for that matter. She's as closed as they come with feelings. And I understand her being scared but right now I need my kids more than I ever have. She's being selfish, I realize that, but I love her more than she will ever know. I'm not sure what to do with all of it. She has a birthday coming up in a few weeks. My first thought was not to send her a card, or the money I was going to send her, but that's just pettiness on my part. So probably won't do that. I just don't know.
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Wendy, there's an excellent book by Patrick Quillin called Beating Breast Cancer With Nutrition. If that's the one you mean, it has one of the best explanations of why sugar is bad for us when we're dealing with cancer.
Awww, Gracie, I'm so sorry about your daughter's lack of consideration for your feelings. I would try to accept that she has something in mind she wants to get you, and I hope she follows through quickly, especially since you shared your disappointment. I don't think she's necessarily pulling away, or I don't think she would have called you on Christmas morning; just pretty inconsiderate. And I don't think I would ignore her b'day, which could end up widening any gap you may be feeling. Just some random, unsolicited thoughts, and I hope she makes it up to you.
Casun, I'm wondering if the two lesions they biopsied were too small to be seen on MRI. I don't recall the exact size tolerance, but somewhere less than 1 cm. is too small to be picked up on MRI. But I'm so glad your brain was clear!
Thanks for the update on MomATT, Babs. How're you doing? I missed quite a few pages here after your trip to France, and don't recall seeing what regimen you're on now. Hope all is going well!
Loving, I'm so sorry your brother is having such a rough time. Your description of his medical team certainly adds to the angst! Is he satisfied with and/or stuck with them for some reason? Does he also live in the LA area? Male bc is so rare, I'm wondering if there are uniquenesses to treating it where experience might go a long way And wasn't there a cluster in the San Diego area, associated with one of the military bases? Just wondering of UCSD might be able to shed some additional light on his care.
Christine, just adding my welcome! I'm so sorry about your re-diagnosis, but glad you've found us.
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Gracie- So sorry your relationship with your daughter is strained. That is a tough one. You are right that sometimes family members have a difficult time facing things like this. Choosing to be kind teaches even adult children.
I'd rather have a hug or time together than anything else.
Thank you to everyone for the good vibes! Scans came back stable...including the brain. No more scans till May. Now I'm goin back into denial for a few days:). Your kind thoughts are more powerful than you know😌😌
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Casun: Sorry about the scalp lesions. Deanna is right about MRIs. I guess that's why drs use CTs, PETs and MRIs because certain things just don't show up as well on one or the other. But as they say, better that the lesions or on the scalp and NOT in the brain
).Gracie: When your mom has cancer, it's a touchy thing. My mom had soft tissue sarcoma when I was a kid. I had to take care of her when she was sick, and after a while, I just had to withdraw from her for my own emotional/psychological survival. I was only a teenager when she finally passed. But your daughter is an adult. She should be able to handle it, but none of us is here to judge or hammer away with the "shoulds" as in "well, she should do this," or "she should be able to...." Everyone is different. If you have more than one child (or more than one pet...), you know they're all different. I have four brothers, and only ONE is calling me up regularly. Two of them act like they couldn't care less. I know that's not the case, it's just that each one is processing my situation differently. I don't know what's going on with your daughter. Hopefully you can have a conversation with her and see where she's at. And if she doesn't want to talk about it, you have to respect that and let it go.
My daughter is only 23, and she and I talk about my terminal condition all the time. We try to go out and do things when she's here on school breaks to make memories. But if I had a second daughter, she might have handled it very differently. She might have been like me...withdrawn after a while.
Just continue to love your daughter with all your heart, Gracie. She knows you love her, and deep down, this whole situation is very difficult for her, just as it is for you. There may be times when she wants to cry her eyes out, but she has to be strong for her own kids. None of us will ever know what's going on in someone else's head, either consciously or subconsciously. I don't know why she didn't even get you a card. That sucks, but there might be some crap in her life that she's dealing with, and she truly didn't have the time.
Give her the benefit of the doubt for now, but don't completely drop it. Whatever's going on with her will come to the surface eventually. We're just glad you can come here and vent when you need to.
((Hugs))
Lita
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Kathryn, Yay for stable scans. WOOHOO! There is nothing like a few days of denial to make us feel good, right?
Gracie, I am sorry hat your daughter disappointed you. It could very well be true that she has something in mind for you and has been unable to get it. Only you can decide how to react, but think long and hard before you shut you dd out. Sometimes there is no turning back, and you might regret it. We are all human and have faults. We all handle difficult situations, like the illness of a parent differently. There is no way to understand or explain why someone reacts in a particular way. I remember years ago when my mother would get angry because my grandmother wanted to use a cane or said she couldn't do certain things anymore. My mom never told my grandmother directly, but I got an earful. It was so uncharacteristic for my mother who was usually kind, helpful, and caring. After a while I realized that my mother wasn't ready to face the fact that her own mother was getting old. She was in denial and handled it the only way she could. If your daughter is truly turning her back on you and you can't resolve the issues that presents, don't let her drag you down. You have enough to handle. If you think she is just having trouble processing everything, use your best judgement to do what is best for you. I can tell that you love your dd in spite of her recent actions. Take some time with this.
Lynne
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Kathryn - YAY on dating stable boy!
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Thank you all for your support! I have my next chemo tomorrow morning and have been glad to be able to return to work half days during the holidays. I'll be going back full time next week. I'm hoping that all goes well and that I don't get too fatigued going back to a full time schedule. Hope everyone has a very happy 2017!
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Thanks ladies for the support...I won't cut my daughter out..it's beyond my comprehension to do that, like I said that was just pettiness coming out, and I know that wouldn't help anything. I talked to her several times already today and she just acts like nothing has happened... so I'm really confused I have no idea what's going on! I know she feels really guilty because she lives so far away and she can't get time off to come home, but I don't know if that would have anything to do with this. I'm just gonna give it some time and see what happens.
Kathryn...YEA on scans... very glad to hear that!
My first scans since diagnosis and August are the second week of January I'm getting a little nervous about it hoping for the best
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Z, when I began treatment for the MBC, I developed pain and swelling in my breast at the lumpectomy site, and in my armpit. My MO sent me down one floor to the breast health center. My breast surgeon wasn't quite sure what to make of it. I took two courses of antibiotics as a precaution, but there never was any infection. She recalled that occasionally, there can be a reaction at the site of the primary tumor when systemic treatment is started. Two years out for me, new treatment, and something was going on. Long story short, ended up with the lymphedema therapist who did some great massage. The swelling had begun to resolve prior to that, however. It was more annoying than anything else.Therapist also used compression tape and recommended a snug sports bra. You can massage the area with two fingers to help drain the fluids, if in fact that's what's causing your discomfort. Good luck with this. MJ
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happy for you Kathryn!!!
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Wendy - "I couldn't stop crying, was a bit embarrassing in person". Oof did that crack me up. yes, i'd rather cry on my keyboard and get a response a couple of hours later from compassionate strangers I will never see in the supermarket of my ridiculously small town. totally agree. works so much better.
Gracie - One's relationship with one's kids is not always a two way street. If you want to weep some more, read The Giving Tree. Kids have a propensity and perhaps a right to be selfish in their relationship with their parents. She appears to be giving it all to her kids, which in the end may be right and good. You have been a great mom and fantastic model, apparently. Lita has an exceptional handle on the situation from her personal experience. I would let DD go, support her when she asks, let her define the relationship. Cancer is overwhelming for everyone involved. You don't want it to screw up your relationship with DD.
I am grateful for this forum where I can come and deal with this. Having this outlet allows my family stay out of it which is good. Mostly they can't do much but get on with their lives and allow me to enjoy it ...
Kathryn - I hope you immediately catch a cruise ship and float down De Nile for a good long time. Awesome. So happy. If they want you to wait until May, they must not be worried about you ...
Workingmom ... thank you.
Wishing everyone complete healing in 2017. I am glad 2016 is over, personally. Not my worst year, but not my best year either ....
MomAllTheTime - Wishing you healing and spa days and peace and no migraines.
>Z<
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Thanks MJH. I have not had a lumpectomy or any surgery. The left armpit and the side of my left breast where I have tumors burns and hurts. Sometimes more sometimes less. Today it was more. If I hadn't just had a stable scan, my mind would race. Actually it still does. I have to remind myself that on December 15 those tumors were not hypmetabolic and they were the same size they were last July. weird stuff.
Body work, lymphatic drainage etc. does help. Interesting that it is the same for you. I guess I'll just double down on dry brushing and other lymphatic system care strategies and see how it goes.
>Z<
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To all the moms here and especially you Gracie, I once heard the statement that our children will NEVER love us as much as we love them. This stunned me at first but when I think about it, honestly, I believe it. At least it's true for me. I hope this doesn't make me sound ungrateful to my mom and dad, or that I don't love them, but I do think this applies, for me at least.
Will this help you, I don't know but I am sure your daughter is frightened out of her mind and doesn't even know what to say, do etc. I agree don't be petty. She will come around and she'll feel badly about her behavior.
My parents are feuding with one of my brothers and my mom told me she mailed a Christmas card to his house, but scratched his name off the envelope and left the names of his wife and children. THAT is petty and frankly unbecoming to my mom. I didn't say anything to her about this, but will in due time.
Happy New Year All -
Amy
PS when I re-read my post, maybe her behavior explains my feelings about parents love...don't know but maybe.
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Kathryn,
So happy your scans are stable!!! I've been thinking of you today. You are always so encouraging to me. Hope everyone else has some good news too! Happy New Year!
Anita
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Deanna. I'm on taxol- 3 weeks on 1 week off. Finished my first cycle and doing ok but feel as if I'll lose my hair soon! Had my wig restyled. Hopefully I'll wear it this time. Looks like my dd will be getting engaged soon- at least we think so! They're thinking of a wedding the end of March/ beginning of April. I'm sure my condition is a factor! I only hope I still have lashes then. That's the vain side of me. I should be happy I'm still here for her big day!!! Spent my week off from chemo and work looking for a place for the wedding. So tired but happy I can do this!!!!
Kathryn that's wonderful news. Happy dance time!
Gracie I have 2 kids. My dd is 110% there for me and my son is MIA. They were both raised the same and yet so different. He also has trouble dealing Maybe your dd also has this problem. I've spoken to him about how I need and want him in this fight with me but it seems as if it went over his head cause things never change. Don't let your dd get you down You need to surround yourself with those that are there for you! And we're all here for you!
Babs
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Lita, Great advice that I need to follow more closely. I have two sisters who have barely spoken to me since Dx 18 months ago. Now we are moving even further away as we sold our house of 15 years and still no calls or anything.......hurtful. I have tried calling them with lukewarm response. We were pretty close before so I don't get it but got to let it go I guess.
Kathryn, great news. The ability to live with relief for even three months in between scans is such unbelievably comforting. Wishes for many many more!
Welcome Christie, Sorry you have to be here but it's a great bunch of supportive women.
Gracie, I know Lita is right in so many ways but it is still hard to fathom how people can SEEM so self absorbed. We need our loved ones so much more now than ever!
Wishing everyone a blessed New Year and some astounding new developements on the metastatic cancer front for 2017!
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Hello to all,
I've been reading and keeping up to date on everyone but not posting much. I think of all of you everyday.
Kathryn, so happy to hear you are stable! Please celebrate your good news and do something special.
Gracie, so sorry your daughter has hurt your feelings. Lita and Z have given you some excellent advice as well as everyone else here. I hope you can feel at peace and resolve any hurt feelings. Hugs to you.
Babs, how exciting your dd will be getting married. And whether you have lashes or not I know you will look absolutely stunning.
Amy, how is Xeloda treating you? I saw the pics of your daughter's wedding on another thread, they were just beautiful! You both looked absolutely gorgeous!
Hugs to everyone here, wishing all of you a Happy New Year, full of good things!
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I hate writing this, and here goes:
As some of you know, I had some breathing issues prior to Christmas for a couple of weeks so had a CT done just before Christmas. The results came back with the cancer now in both lungs, previously only in one lobe of the left lung, that was in September. Also the Mets that were already in my liver are bigger and I have new smaller Mets as well. I asked for and got a hospice referral and the intake nurse came to my home today to start that process. I'm also on O2 24/7, and have doubled my used of pain meds due to back pain in my sacrum and coccyx. The cancer is now a pain in my ass.....(do laugh here)
I'm still ambulatory, drive, grocery shop, Cook, you know, activities of daily living. I don't look sick and have had several days in a row of feeling fairly decently, though with continued low energy. I'm going over to some Jewish friends' home tomorrow for dinner, and have plans for breakfast or lunch a couple of days next week. Seeing my MO on Wednesday, and will start the process to get the prescription for life ending drugs. Thankfully, CA legalized that in the last election and it became law in June, and my MO is wiling to prescribe.
As many of you have said, this forum is a lifeline. I don't know how I would've managed, even though I'm surrounded by great friends, several of whomwork in oncology. You all just get it...and I thank you for that.
Love,
Patti
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Yes Deanna that's the book very interesting
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Patti - I am confident from your post you are well advised and that you are done everything right. Your approach to end of life is brave and thoughtful. I am glad you are well. May you have great QOL surrounded by everyone you care about in 2017.
>Z<
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Oh, Patti. I wish you peace and comfort. You sound steady and sure of your path; I hope this is how you feel as well. Perhaps things will hold steady for a while. My hope is that you-- and all of us, really-- will be able to enjoy the coming springtime.
You have been so lovely to support others here. I hope we can help lift you over these shifting days.
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Patti. So sorry about your progression. I hope you have QOL for as long as possible. This road we travel isn't easy but with the support of our bc sisters we don't walk it alone. We're here for you!
Bab
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Patti, I am sorry to hear that your cancer has progressed. I know that you are making the decision that is right for you and that you have thought it all through. I wish I could find some profound thoughts to post here for you, but I have none. This disease does not befriend anyone. It is an evil, invasive, sneaky disease that finds us when we are enjoying so much about our lives and snatches us from the comfort of normalcy and deposits us into a sea of uncertainty. I hope you continue to feel good so you can enjoy the rest of your life. I am glad that you continue to see your friends and live your life as fully as is possible. Your hospice team should be able to help you through any issues and answer any questions you have. Of course, we will always be here for you. You are in my thoughts and prayers.
Hugs from,
Lynne
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Patti, I'm sorry to hear this news. I'm glad you are still getting around and can enjoy your friendships. We are all here for you, and my thoughts and prayers will be with you!
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Patti,
I have no added words of wisdom. Just hugs and prayers.
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Patti - thank you for sharing these difficult times with us. I'm sure it took a lot of courage to write your post. I'm so glad that you are well surrounded with friends and enjoy the simple good stuff of life. You seem to have found serenity in your decision. My hope is to follow your path when my time comes. I wish you QOL for as long as possible and peace. Sending you BIG hugs and we are here for you.
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Patti
Thank you so much for sharing with us. I know we all wish the .CA would have treated you better. I hate that is a pain for you now.
Like others have said, you seem at peace and confident with your decisions. That is always my goal. I send you thoughts of peace and wish you loving kindness as you move forward.
Peace to all
Mary
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Patti,
So sorry to hear about the progression. Spending time with friends and family and enjoying QOL sounds perfect. This whole MBC business is a PITA except for the deep moments we cherish while living with it. It sounds like you have put together a good plan and I echo what others have said. We are here for you!
Warmest wishes for many many peaceful and pain free days.
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