Bone Mets Thread
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Hi All!
Cristina, I so sorry about your scan results. I hope you stay with us, but you do what is best for you. We are always here for you.
I am 2 years out tomorrow from MBC diagnosis. I'm not sure whether to mention it to DH or not, he gets so upset. I may just make a nice dinner & not tell him why, it will be our little secret. Bone scan on Monday, of course, I'm nervous as hell. Maybe this is why I've had a migraine with the phantom smoke smell since Monday, wish it would go. On the bright side, since I've had the migraine, I haven't been able to do much & so the pain in my back is feeling a bit better. Gotta find the silver linings...
take care all, cheers, dee
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Hi to all,
Christina, Yes of course stay on this thread and also go get lots of info on the liver mets thread. We are your bone mets sisters and will stay right along side of you.
Dee, Yay 2 years! 2 years is a milestone and worthy of being noted!
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Dee Two years is a cause to celebrate. I hope the scans are good!!! I fully understand the anxiety with having them!
Have a great weekend all
Babs
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good morning ladies,
Christina that's sucks! I can totally get how you must be feeling however what a lot of these ladies have said is so true. I have met numerous woman in Vancouver recently who have liver Mets and they are all doing fine. You are young and strong you will get to NED it's just a matter of finding the right treatment for you. You will get there. Please stay on this thread I would miss hearing about you and your family and how you are fairing. I don't post much anymore but I do read and keep you all in my thoughts.
Dee I'll join you on the a scanxiety train , you are right we need to find the silver linings where we can and hide in them. Two years good job I just had my one year didn't do anything besides flip cancer the imaginary bird. With the rowing I have been doing my back has been getting angry with me too but with a few days break it eases as well.
Big day today I will be racing in my first dragon boat regatta. Hoping all the while that I don't snap any appendages. Being together in a boat on the ocean with twenty two woman who are and have fought this disease has been very inspirational . When we are rowing at full speed and grunting and heaving I can feel the fight that is in all of us to beat this terrible disease that tries to take us down. Groups of woman like this page and that boat are so strong it's fearless. I love each and every one of you, you have all made this last year immeasurably easier to bear. Thank you
Wendy
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Wendy-good luck today on the dragon boat!!
Babs
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Christine, I am sending you a big hug and as you know already you're in my prayers. A new treatment will kick this to the curb and give you back the strength you need. I'm glad you're on top of this with a biopsy request. Sending you every bit of positivity I have. Carol xx oo
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Good Morning all,
Seems as if I missed some newbies on this thread. Welcome, sorry you have to join us, but this is the best place for info, knowledge, sharing and support.
Dee - Congrats on 2 years! Cause for celebration indeed. Good sign that your back is feeling better.
Wendy - We missed you. How is the trial going? Can't wait to hear about your dragon boat adventure!
Cristina - how are doing today?
Patty - waving at you!
My generic of Femara was changed these past 2 months. I was so much more comfortable with the TEVA generic but it's out of stock. Pharmacist suggested I try the original Femara, insurance approved it. I hope it will make a difference in terms of joint and muscle pain.
Good weed-end and hugs to all!
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I also had a bisphosphonate for only 2 years. My mo was concerned about increasing risks not only for ONJ, but spontaneous femur fractures. I don't know if there are studies that state how the risks change over time, but do know that the use of these drugs over long periods of time are viewed differently by different mo's. I know we all want more certainty with our treatments, but science is not there yet.
As for se's from meds, having them or not having them is no indication of adrug working, so don't worry about it. Remember, some women go through natural menopause without a single hot flash!
Have a great weekend all.
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HI ladies,
Thanks for the support. I will check out liver mets board of course but I'm comfortable here. I am hoping I'm one of those people who gets a long response, but realistically, I think my cancer mutates rather quickly and I will have to keep changing treatments. I really want to supplement with alternative therapies. I feel like there is too much stress in my life and I need a way to deal with this. I need some help with this.
Wendy- the dragon boat race sounds awesome! I would love to be with a whole bunch of female stage 4 thrivers.
Dee- congrats on 2 years! I hope to make it!
I am taking it easy. On top of that emotional blow yesterday, I STILL had to get the 3 shots of Xgeva, Fasloex and Lupron. My onc said maybe they are helping slow down the cancer "a little." I was so ready to skip all 3, to say FU to the whole thing.
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Wrapping you in healing hugs Cristina.
Amy
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Cristina - sending you so many good thoughts right now.
Congrats to all hitting milestone anniversaries and getting good scan results. Hugs and prayers for everyone waiting on scan results and going into new treatments. And Wendy, I love the description of the dragon boat team and your combined effort....have a wonderful experience.
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Wendy - your description of the women you row with in the dragon boat regatta gave me chills (in a good way!!).
"...When we are rowing at full speed and grunting and heaving I can feel the fight that is in all of us to beat this terrible disease that tries to take us down..."
Very inspiring!Good luck today!!
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I meet with the radiation oncologist next Friday and I believe it will either be a 3 or 5 consecutive day treatment. As for the additional bone mets, my MO said they were new ones. I am working on being positive and am feeling more like myself today. Just frustrating not to be making any headway. I appreciate all of the women on this thread and I follow the discussions. Thanks for all your support.
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Christina, I can't tell you how sorry I am about your scan results. Are you still seeing the second opinion onc @ Rutgers you had liked so much? And of course you need to stay here with us! We all want to know what's next and how you're doing. Did you ever get a copy of Bestbird's compendium of mbc txs? I think she's sent out more than 1,000 of them, so be sure to ask for her a copy if you don't have it because there a lot more things available to treat liver mets these days, which is no doubt why a lot of women are doing well with them. Do you follow Ann Silberman's blog, "Breast Cancer, But Doctor I Hate Pink?" She's been living with liver mets a long time, including spans of NED. So don't you dare give up hope!
Wendy, that's great about the dragon boat racing! I, too, loved your description of it! Would love to see a pix!
Glad you were able to change meds to name brand Femara, Linda! I hope it will make a big difference in your pain level!
Interesting comments about length of time one can stay on Xgeva. I'm seeing my UCLA onc on 5/23, and since I'm fairly new to Xgeva and loving how much less my back hurts, I'm going to ask her what they recommend and will share if it's anything that hasn't already been said. I can also ask Dr. Aghaloo @ UCLA Dental School. She's the Xgeva expert I was sent to for an evaluation prior to going on Xgeva.
Dee, congrats on 2 years! Absolutely reason to celebrate!
Gina, I'm so sorry about your very recent dx, but glad you've found us! Welcome.
tedmom, I'm very sorry about your results as well. Just looking at your stats -- if your mets are limited to your bones (sorry, I don't recall w/out trying to flip back) -- I'm wondering if Faslodex+Ibrance would be your next logical regimen, rather than Xeloda? Just a thought...
Patty, hope you're still feeling great!
Hi to everyone else! Deanna
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Christina, I am very sorry to learn your progression. I haven't been here much recently, because I did not feel I could be much helpful. But now I really want to give my two cents, just in case it could help a little bit. I think you will need a lot help and support at home and personally. It's not realistic to build a new relationship that would strong enough to aid you through all the difficulties (cares for children, household chores, treatments, etc.). I would imagine it would be very hard to do all of this by yourself without your husband. You might want to re-evaluate your relationship with your husband. If your husband's problem is mainly limited to his limited earning, I think at this point you probably need to make some mental adjustment in terms of expectations. If it's possible at all, I think it's the ideal to turn your husband a full dimensional caregiver who takes the full responsibilities in caring for the young kids, in doing all the house chores, in attending to all your needs in your treatments. You might want to pay less attention to his earning less. Money at this point is the least concern. To make this transition requires patience and strength (you need to reform your husband). I trust you, for your own benefits, can build them with your determination to fight the disease. Wish you all the best!
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Xavo - I missed you on this thread, glad to see you pop in.
Question to all on Xgeva or other bone strengtheners: Anyone feel more pain one week prior to injection/infusion?
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Xavo, welcome back. Saying hi to Deanna and others who are always so kind as to mention me in your special ways. Thank you -
Linda, regarding Xgeva, I can't say I feel pain at all prior to an injection, however it's been since December 2015 when I had my last. Still holding until I get the okay regarding my pulled tooth. The bone seems to be rebuilding, however I don't know if it's normal to have somewhat of a hole left without a complete fill on it's own. I see the Endodontist on Monday so he'll be able to answer. I'm not going to have an implant put it - that's just more messing around with my jaw bone which I want to avoid. I'm looking forward to getting back to my Xgeva shots again.
Hope you are having a good weekend.
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I feel the same burning pain I have always felt. I get worried thinking it is progression but scans showed healing 2 months ago. I Think xgeva may add to this. MO told me maybe inflammation. Will know more in 2 weeks.
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I am so confused about this Xgeva thing and can't wait to see my oncologist next week. I really feel naïve... I didn't know it had anything to do with the dentist/dental work/oral care, etc...??? I don't feel any pain before or after my shot... it has no effect on me that I know of. I just know two things... one, my doctor has told me it's the single most important thing for me to get...( I have been known to skip a Herceptin treatment here or there if I am feeling especially crabby about the side effects) and two, I always get my blood drawn before I can have the Xgeva shot. My oncologist is primarily looking at my creatine (sp?) levels... or my kidney function. Mine always runs a little high (the level). I think I don't drink enough water.. even though I try and try. So once it was at a level that was too high (above 1.20, I think?) and she couldnt' give me the shot. For the life of me, I have no idea if I asked her why... but I am going to get the full Xgeva lowdown next week. (at least, her version. I trust her completely...I think she is the best onc. in Colorado.)
Thanks for all of your feedback! Deanna - I hadn't heard of that blog, Breast Cancer? But Doctor I Hate Pink but just spent an hour reading it. I have liver mets as well..... but haven't been on any of the treatments that she writes about. Thanks for recommending it!
Hi to everyone else....
XO
Andi
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So here it is ladies, us grunting our way over the finish line.
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Wendy Here's me liking your accomplishments in that shell
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Wendy - Thanks for the picture! Great image to etch in my brain! I've been trying to get back to the gym since I had some progression in December scans and changed treatments. It's just been such a challenge with working full time, commuting, and dealing with my father's recent diagnosis of esophageal cancer and my mother's health issues. I don't have any children but now find myself caring for my parents who moved back north from Florida to be near me since my diagnosis. I'm watching my dad go through chemo and radiation now and he'll be facing surgery soon to remove part/all of his esophagus. He's almost 81 and he's been a real trooper. The chemo and radiation are knocking the stuffing out of him. It's hard enough enduring the chemo/radiation but he also cannot eat and even drinking/sipping is extremely painful for him. Meanwhile his MO and RO are at odds regarding a feeding tube. I didn't go through chemo or radiation because I was stage iv at initial diagnosis. I hate watching him go through it and have him worry about me!
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Wendy, you are one amazing woman!
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Wendy. I am in awe of you!!! My brother who's the Meducal Director of the Josie Robertson pavilion of MSKCC suggested I join their dragon boat team and I just laughed. I couldn't possibly and here you are doing it. Bravo to you!!!!!
Babs
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anyone have it in their chin and skull and if so what did you do? My hearing is affected, peripheral vision, numbness in side of head and numb chin / lip. Help please
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Rachel, I have one met on my skull & they think it's pressing on my olfactory nerve which is why I get the phantom smoke smell, but they've offered no solution, I know this doesn't help right now, but I am going to press for a solution at the end of the month when I see my MO.
Can you have them radiated? What have they said to you, they can't just leave you like this!! I'm so sorry that this is happening. I know that hugs don't help, but I'm here for you in spirit. ((hugs)) dee
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Andi, do you know the reason your MO thinks the Xgeva is the most important of the treatments? I'd love to know the answer. I'm struggling with wanting to continue that medication due to the side effects I'm personally having from it, but if I could understand better why it's so important, it would help me mentally to trudge on, side effects or not.
Cristina, I'm so sorry about the progression. You have had more than your fair share of heartache with this disease, and I hope that whatever treatment you go on next that it whips that liver right back into shape and knocks those suckers out. I think all of us bone metsters fear the day that this beast spreads to an organ so we are very sympathetic to what you must be feeling at this point. I hope you will stay on this thread, too.
I've been meaning to ask this for a while now -- has anyone here had their B12 level checked and has it been high? I randomly asked for a B12 level a few months back because of fatigue, thinking maybe it was low. It wasn't low; it was sky high, a little over 2000 (normal ~400-900). I asked MO about it, and she brushed it off, but not really with a satisfactory answer. I had it retested eight weeks later, and it went up to 2600. This time, it worried my DH, and he put a call into MO, but they never responded. If you look it up on Dr. Google, it means bad things, but what, I'm not sure. I have had crazy low white counts (about 2.0) ever since my radiation last September, but even before that I was only around 3.0-3.5, never higher than that. My platelet count is also below normal. I just wonder if they are missing something. One of the reasons for a high B12 level is metastatic cancer, but usually a solid tumor. Other reasons are leukemia, liver disease, and kidney disease. I don't take any supplemental B12, so it's not that. It has me worried, but no one seems to want to run any extra tests. I just wondered if anyone else has had this kind of B12 result while they have metastatic cancer. Maybe that's the reason it's high, just the fact that I'm metastatic, even though as of the first of January, I was NED. I'm kind of disappointed in MO that she keeps blowing this off. You'd think she'd at least run some specialized labs for leukemia or myelodysplastic syndrome, which is a real risk after Cytoxan chemo (that is what Robin Roberts of GMA ended up with post chemo for breast cancer). Symptoms of that are low white count, low platelet count, low red count, and some other things. I almost don't want to know if I have something else going on, but I actually kind of do want to know.
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Wendy- awesome photo!
Deanna- thanks for the encouragement and support. I am feeling like my time here on earth has been sped up but I know I have options. Just scared of all the chemo to come when I haven't done it in year
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How can a ct/ mri miss a met in my chin and temple when that is what I've been complaining about since Dec. had Ct/mri in March and it was fine. Pet /ct in Aptil showed chin met and skull met. I'm so freaked out
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Rach- pet scans will give false positives You need to take all scans with you for another opinion. Did you have any cosmetic work done?
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