Bone Mets Thread
Comments
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Jen, I've been stable for a year and a half on tamoxifen. I'll let you know what happens in my next CT scan. I keep trying to make good complementary changes, but since I work 40 hours or more a week and my husband does shift work, I find it difficult, so it's sporadic at best.
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hello everyone! Oh my, what a lot of new friends we have here. So sorry about that, but glad to be of any help. For those of you who do not know me and my current condition. I was diagnosed in September with extensive bone mets. Bilateral, multi focal, multicentric. Ilc and idc. My bone mets are ILc. I have been taking tamoxifen for 7 months. My bone mets are stable and my breast tumors are almost undetectable. I have also been taking CBD-THC. My last appointment with mo was on March 18. My ca-27-29 was at 31. Hooray!!!
I am so sorry if I have worried anyone! I have been busy house hunting, staging and selling our family home, and moving all of us into a tiny apartment, while our new house is being built. We have decided to put our retirement plan of buying some land and having a hobby farm into action. My Dh won't retire for another 16 years. We wanted to live our dream now. We found a great house to be built on almost three acres, that backs up to a 360 acre wildlife conservation area. Plenty of fresh air and space! We are so excited!!! I am doing very well. I do have pain from the mets in my lower back. But pain pills and staying active help!! I am probably over doing it a bit these days. I have such a hard time excepting the new normal. Especially during this move. The old me, would have done a lot more of the labor, before Dh ever got out of bed. Now, I am more the cleaner and organizer. I used to be able to do it all. Damn this crappy disease!!
Thank you Bjsmiller and Lynn for your concern. It warms my heart!! Love and prayers to all of you! Mary, a special prayer for strength for you and your family during this most difficult time. Love Chelle.
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Here is a graph of my tm's since dx. I just love this pic!!
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Good morning, dear ones! Momallthetime, thank you so much for asking about me. I'm doing well. Lynne, I'm very glad you are still with the onc you like. I was interested, too, in hearing his estimation of Arimidex's length of efficacy. You are braver than I--I never would have had the courage to ask that question. Sending a big hello and love to everyone, and everyone new here. What's new: we had to say goodbye to our dearest and sweetest little kitty, Graymmie, a few days ago. She was 17 years old, and adorable. Also, while the sun is shining brightly this morning, we had a surprise last (I hope) Nor'Easter yesterday with more than six inches of snow. Not very conducive to beginning spring clean-up in the gardens! And, last week I saw Gloria Steinem speak. Afterwards, we talked together, when she was signing my book, about a project we both did volunteer work for, locally, in the past, and I found myself telling her about myself. She looked me straight in the eye, considered me carefully, and without a moment's pause, she said to me, "Make your own decisions." Her words are emblazoned in my mind, and I thought I'd pass them on. Sending loving thoughts for a good day ahead for all of us.xo,
Valerie
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Chelle, How wonderful for you and DH to live your dream early! I for one, cannot wait to see your dreams come true. Pictures pictures pictures when you have something to share.
Momallthetime, thanks for asking. The hole in my head is healing nicely - of course I mean where my tooth was extracted but there are days I truly feel as though I've a hole in my head, head. Just another joy of BC.
Happy to hear the good news with everyone and not happy for our losses or recurrences.
I feel as though I have a lifeline through this board. I had the most disturbing conversation with my H (no darling today), actually it was one-sided as after he made such an insensitive remark, I clammed up. I've had constant left hip pain for close to 18 months so I've asked for a recommendation from my onc to a doc who can inject cortisone. When I called to make an appointment, I explained the purpose of my call and my H, who unfortunately is a physician, heard me. When I got off the phone he said and I quote "you are a nightmare patient, telling a doctor what kind of treatment you want because a friend suggested it"
I was stunned at not just the words but the intonation. It stung...
Later he kissed me on the top of the head and a bit later apologized for his words, but even so, it still hurts. I say unfortunately he's a physician because when it comes to me discussing my pain and the narcotics it takes to relieve the pain, he's very harsh and seems to dismiss my complaints or is critical. The irony here is he's a Palliative Medicine doc and I KNOW he doesn't speak to his patients like that.
I honestly think because I'm not his patient, he feels frustrated that my onc continues to throw pain pills at my pain rather than physical therapy or other treatments. If there's something else behind his words, I'd love to know, but for now am still too hurt to be able to speak up. I tear up just thinking about it, let alone voice my feelings. Anyway, thanks for letting me vent...I feel better sharing this with women who get it.
With love and understanding,
Amy
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AmyQ, thinking of you with love
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Amy, sent you a pm, cheers, Dee
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Amy, I am sorry your H (I hope he will deserve that D again soon) was so hard on you. I have my own theory about it, but it's just my own opinion. You are not just a patient to him. You are the love of his life. It is difficult for him to see you suffer and know that he cannot help to heal you, which is what he really wants. His patients are patients. Although he cares about them, he is not emotionally invested in them. He can treat them, but then he can detach himself from the situation. You are his wife, and he has so very much invested in you. There is no detachment possible. He wants you to have everything available that will help you feel better and help to heal you. I think it is probably frustrating to him that even with all his training and experience, he cannot take charge of the situation and make your disease and pain go away. Why do we tend to lose patience with the people who mean the most to us? I think it is because we are most comfortable with them. They see all our flaws, but they still love us. You have the right to ask about treatments for yourself. If the treatment is not appropriate, the doctor will say that. I think you are acting like an informed patient rather than a nightmare.
Hugs, Lynne
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Good morning all,
Wendy - so happy to hear from you and that your are living your dream. You go girl! Your TMs are quite impressive.
Valerie - I'm so sorry for the loss of your cat. I lost my dog in Nov, I cried so much. Glad you're doing well. I asked my MO about Femara, sister to Arimidex, when I was first dx'd and she told me she had a patient that has been stable for 8 years!
Amy - isn't good to have a place like this to rant away! Glad you got it out of your system. I confess having said stupid things to my late DH that I regretted bitterly afterwards. God knows he was the love of my life. I think the people closest to us can sometimes come up with the most stupid things to say. But I command you on suggesting your doc a tx. We know our bodies and we are our best advocates.
Mommal - I can just picture you on your knees... Take care of that back.
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Valerie, I am sorry for your loss of Graymmie. She was a member of your family for a long time. I love the picture. She has that expression that only a cat can give. Thank you for sharing Gloria's wise advice. I rarely hear much about her lately. We got snow here, too, although not quite as much as you. It is cold again today, but I hope it begins to melt.
Lynne
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Amy, I can certainly see why you are hurt by your husbands words. That being said, hard as it is, try to remember that cancer is hard on the people that love us. Sometimes the frustration of loss of control over this horrible disease causes harsh words to be said. It must be especially hard for your husband because he is a doctor. I do disagree on his opinion that you are a horrible patirent, I applaud you for taking an active part in your treatment, nothing wrong with that! Forgive his harsh words, give him a kiss..we all know life is to short for hard feelings
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Valerie, I am truly sorry for the loss of your beloved cat. I lost my cat last month, suddenly and unexpectedly. We had her for 5 years but she was a rescue and we were never sure of her true age..we suspect now that she was older then we thought. Our animals truly are part of our family. She was my constant companion and confidont to all of my hopes and fears. In her honor, we adopted 2 new kitties from a rescue and once again have joy in our home
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Oh ladies, through tears I write to thank you! Your kind words and complete understanding are what I needed. I also think your theories as to his harshness are probably spot on. He's frustrated and helpless to help me with my disease. I especially like the advice to kiss him back and put it behind me.
Btw, I was able to shake a few trees and get an appointment today for xrays and an injection, if warranted. I am glad I took the bull by the horns.
XO
Amy
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I'm glad to hear your femur is good! I'm a little more at peace since I decided to do the rads. It gives me hope 20 days in to my new diagnosis. Thanks for the comments!
De
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Chelle, That graph is a great way of seeing how dramatically your TMs have dropped. WOOHOO!
Patty, Hi there. I heard that you are having trouble with back pain. I hope you find relief soon.
DebK, It must feel good to have that decision made about rads. Let us know how it goes and when the tx begins.
Mom, I feel so bad about your back. Take it easy and let it heal.
Love to all.
Lynne
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Valerie, It so hard to lose an animal, but 17 years is incredible! Was your cat a Siamese? A chocolate point? I had a chocolate siamese that I loved and she loved me and nobody else! Very protective of me. Lynnwood, nice to see you and you have new kitties? show us pictures.
Amy, it's good to hear you feel better about dh ( is the d back?) hope the injection helps your pain.
Chelle, Nice dip in numbers.
moma, how is your back? Have you tired a Lidocaine patch? Sometimes they help the muscles in my lower back.
Dee, Enjoy your warm weather and road trip.
Patty are you out there? Hi Carol!
letmywifelive, I find it very comforting that you are here with us, for your wife. She is fortunate to have you advocate for her.
To all, a good night and know that I think you are all an incredible group of women ( and man).
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Hi all!
Valerie, I am sorry you lost your furbaby! It is so tough, I cried harder when we lost our cat than I did when my mom passed away.
Amy, try to forgive your DH, he knows not of what he speaks... glad you were able to get in quicker.
Chelle, nice to see you here, how exciting for you, a new house! and low TM's
Debk, I don't think I welcomed you here, sorry you have to be here, but it's a good place. I missed previous posts, but I too have had rads & it helped alot (I hope that's what you were asking about)
MomATT, hope your back recovers soon.
As I'm reading the last few posts, I realize that I have missed entire conversations. So I will just say hello to all of you & hope everyone is doing ok. cheers, Dee
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Yes, he's back to a place of honor - my DH was actually surprised at all I accomplished today. I saw an ortho surgeon who dx moderate arthritis. He recommends a total hip replacement eventually, but for now, I have a cortisone injection scheduled for tomorrow morning. My DH said I must have friends in high places because he has never heard of getting in to see an ortho as quickly as I did, let alone an injection the next day. My secret weapon is my DRO - dear or darling radiation oncologist. He made it happen with a snap of his fingers and he did it while on vacation in Peru.
I am very lucky -
Amy
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Amy, this is particularly for you today or rather for your DH to read, it was just sent to me, but it says everything I've ever thought about MBC and I pretty sure everyone else here thinks too.
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Thank you Dee and everyone else who offered advice and kind words. As I said before you get it...
XOXO
Amy
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My mother had several xrays and cat scans at her small local hospitals (3) and no one seen her metastasized breast Cancer in them. They kept treating her for bladder infections they had to demand an MRI to get their answers to her pain. I never seen her mri but seen her cat scan and bone scan which doctors at the 4th hospital which is an all cancer hospital seen the mass on her sacrum area very clear and they can't understand why no one seen this sooner. She just got her results yesterday of the metastasized stage IV hormone responsive breast cancer of the bones it is in her sacrum. Best wishes to you I hope all the best to all battling this disease.
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GG27, Great read! Very true in all aspects!
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Dee-thanks-a very interesting read!
Amy-so glad you're getting help and quickly. And, that your D is back to being DH. As Lynne and Lynwood said, I'm sure he was just so very frustrated at not being able to help the person he loves the most!
DebK- good luck with the rads-hoping it works well for you!
Lynne- I think you made the right decision to follow your MO-I'm sure staying with him makes you feel much more comfortable
Kendrasue- so sorry you lost your sweet cat-pets become our children-one's that don't answer back!!!
Chelle-Wow, love the drop in TM's and that you're going to live out your dream-so good to be able to do that!
I had my TM's taken today and am thrilled. My CA15-3 went down again this month from 128 to 70. At the end of December it was 248!!!! My CEA also went down from 24.4 to 18.1. Xeloda is working for me!!!! Now, I'm waiting for my fractured rib to heal!
Good night all,
Babs
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Kendrasue, I'm a sucker for animals of all types, so I'm sorry to hear about the loss of your beloved cat. If you can, consider getting another to share your love. I know the cat you lost cannot be replaced but you will make new memories and have a new soft spot in your heart which will help it to heal.
Chelle and Babs, yay to TM drops. Yay!!!
Dee thank you for the PM's and your especially poignant article...the timing was impeccable.
Linda and Lynne, life IS too short to hold a grudge, especially against the most important person in my life.
Heading to bed so I can get ready for my early morning injection, but I do want thank you again for all your kind words.
Amy
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For all Dog lovers:
The following link will take you to a 2 min. video that is sponsored by Purina Puppy Chow & SoulPancake. For each person who watches the video, 1 pound of food will be donated to an animal shelter. This give away is only good until April 23, 2016.
Thanks
http://giveitlove.com/one-pound-dog-food-for-a-she...
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Guys first so sorry I even mentioned my stupid back. I am definitely getting better. Cannot sit yet, but I am walking, slowly but I could see it getting better. 5 years ago I was in bed for 5 weeks to avoid surgery, I had missed a step and voila, the rest is History. I had a muscle relaxant, and a heating pad, thank you very much. Hubby put a pillow under my knees, so LindaE that is really funny. Finally a princess.Thanks everyone.
Babs your news are just fantastic!
Chelle so happy to hear about your news, it gives hope to everyone.
Valerie, aww so sweet and beautiful your cat, so sorry.
Amy you do know men are a different species, right? Can't live with them can't live without them. But I agree with your good friends here, he probably does feel inept for not being able to make your booboo go away. It's hard on both of you.Glad your "hole" in the head is getting better.
Txmom just so you know, yes, Dani had a oophorectomy w full hysterectomy after tamoxifen failed her, she was on tam. for a very short time, less than 2 yrs. She had it done laparoscopically and never looked back. Yes, hot flashes(she was in her late 20's) and all the nice things that go along with it, but it's done. She would have liked more children in a perfect world, but she gives it her all to the blessing of the 2 little ones she does have.
Patty, Bosco hope you guys are getting stronger.
Pet/Ct and MRI at the end of week for Dani. Tomorrow we are going shopping to get distracted! Nothing like some good old fashioned therapy!
GN everyone
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Dee, Thank you for posting that link. It certainly started off on the right foot. The first thing I saw was "I HATE BREAST CANCER, especially the metastatic kind". I say those words to myself on a regular basis. Reading the article reinforced my belief that the only people who truly understand MBC are people who have the disease. It is one of the reasons that I keep coming back here even when things get sad here and I want to take a break. My friends, other than those here, do not understand. My family, even my DH, cannot fully understand. I do realize that it is particularly difficult for my DH because he has to live with this, too. He doesn't have MBC, but my diagnosis was devasting for him. I guess his experience is as close as one can get without actually having the disease. Everyone here is important to me. Thank you all for being here and understanding.
Mom, You should never hide your illnesses, injuries, or worries from us. We are here for you even if we can only care for you "virtually." I hope you continue to recover, but I know that even minor back ailments really restrict movement. A shopping spree sounds wonderful I haven't been shopping for months unless you count grocery shopping, yuck. I always found shopping to be very therapeutic. My DH and I did buy a new sofa and a couple of rugs online. Can you believe it? They were from reputable stores and look quite nice. When he was home between hospital visits he started shopping online. Now I swear he buys something almost every day. Luckily, it is not usually furniture. He has lost 50 pounds so he has to buy some clothes that don't fall off.
Amy, I hope you get relief from that injection today.
Babs, WOOHOO for those TMs! That is great news.
Jazzy, Dog lover here, so I did watch the video. It was fun to watch, btw. I am a big softy for puppies.
Mary, How are you doing? I have been thinking about you. (((Hug))).
Hi to everyone. I hope you are enjoying the day. It's cold here, but at least it's not snowing. The sun is out, and that means that I am energized.
Lynne
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Hello everyone, well it seems my chemo (Abraxane) has stopped working since my tms have been in continuous rise since November so mu onco has decided (and I agree) to switch me to Faslodex and ibrance, so I'm going to go take a peek at the "Fanny pack" thread and learn what I can, anyone here taking that treatment now or in the past any comments are welcome.
Aurora
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Amy, I was away yesterday and didn't see your posts until last night. I'm glad to hear you were able to let your hubby's insensitive comment go as quickly as you did. It sure stuck with me to the point that I went to bed thinking about it, LOL. It's actually kind of amusing when you think of the billions of dollars pharmaceutical companies spend on direct to consumer advertising (http://www.fiercepharma.com/special-reports/top-10...), that he would go off on you due to an anecdotal type recommendation. As others quickly pointed out, it was just an easy target for his pent up frustrations, but kind of misdirected if he doesn't like patients bringing him suggestions, which probably played into his outburst. I also believe that those of us here probably have the equivalent of a PhD in bc, and sometimes DO know MORE than some docs who have never had bc nor mbc nor felt the pain or SEs from the meds they RX. But even with those rationales, I would have been hurt, too, so I'm glad he quickly recognized his error!
Now I've got to go read Dee's article... And I hope the cortisone injection works, Amy. If anyone's interested, I've actually found a new supplement (recommended by someone on another thread) that is helping tremendously w/the pain of inflammation (arthritis). It's this one http://www.irwinnaturals.com/products/targeted-pro..., and I'm amazed at the difference, even though I was already taking curcumin. Of course, it could also be the Xgeva (on dose #3 of that) that's helping my pain.
MomATT, so sorry about your back. I'm sure stress is a BIG factor in that happened to you. Maybe as it heals you can carve out some weekly time for yourself -- a massage, a facial, a class -- whatever would help you to relax. You really need to do that to continue to be there for Dani and the rest of your family.
And Valerie, I am so sorry about your beloved cat. Our fur babies truly are family members, and it's so hard to say goodbye to them.
Aurora, I've been on Faslodex+Ibrance since last August, and I LOVE it! Some women do have problems w/Ibrance, but many of us don't, especially after your body adjusts to it. I'm hoping that will be your experience, and that you will be able to stay on it for a very long time! Is your onc going to do any scans to confirm what the higher TMs may be telling you?
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Sorry to hear about your increase in TM's Aurora. I am on Faslodex and Ibrance but don't know yet if the combination is working for me. My WBC and ANC tanks so low, I have to take long breaks, like 3 weeks or more before I recover enough to resume. This has been my pattern since I started in January, but I may be one of the rare exceptions. I hope it's easy and successful for you.
Lynne, my cortisone shot was a piece of cake! The most unusual part was pressure while the novocaine was being injected. It was a weird sensation but completely tolerable. My hip feels great so far. No limp, no pain, no having to lift my leg into the car. This may actually mean I can put away my handicap tag, which I would love.
Right now, there is no pain due to the novocaine but within a day or so, it will wear off and I'll be able to tell if the cortisone is working. I cannot tell you how great it feels to be "normal" again.
I called my father and recommended he discuss this with his ortho today.
Btw, did I mention the surgeon said eventually the cortisone will stop working and that I am merely delaying the inevitable, total hip replacement. Now I really do feel like a 90 year old. I'm at least happy to hear the arthritis is an aging problem and not bone mets. THAT is good news.
I hope everyone has a great day. PS - I may just resume horseback riding if this works! Horse therapy cures what ails me. I know how Capriness (Terri) was so in love with her horses and it broke my heart when she had to find new homes for them. And that silly goat, I wonder what ever happened to him?
Amy
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