Bone Mets Thread
Comments
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Patty,
It's called methenamine. You have to be infection free to start. It's strictly a preventive medication. My urologist said there are no guarantees and we don't know how long it will last, but it has been magic for me for about a year after nearly back-to-back infections for over 2 years. My urologist happens to also have a degree in pharmacy is great.
For a while (with another urologist) I took d-mannose and a large dose of vitamin c. It worked for about 9 months. I still take the extra vitamin c. You can find d- mannose at Whole Foods. Not sure where else. I guess it might be considered more natural, and it is otc, but pretty expensive. Methenamine is a prescription. I take it twice a day.
Good luck.
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kaption thanks. I will ask Mo about it next time I see him.
Hugs all
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Beautiful full rainbow at sunset tonight.0 -
Kaption-so pretty-thanks for sharing!!!!
Babs
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kaption. Thanks for sharing. Beautiful. I love both sunset and sunrise. Truly amazing.
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to AKShelley: oh my I have had this Osteonecrosis of the jaw ever since a crown placed on a molar about 3 months ago ...I have been to a dentist; endodontist and an oral surgeon. All have said no more of the drugs that are of the new class that strength the bones...I was on Xgeva. They said there are lots of people now who have this since these drugs and used to it was rare to see someone with it. Get treatment and find someone who will help you with it. It can be very uncomfortable. Carolyn from Music city
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Speaking of osteonecrosis, I have a root canal tomorrow, then only one more tooth to take care of, then I have to wait six weeks before I can start the Xgeva shot. What do you do if you have a problem with a tooth after you go on those shots? My teeth seem to be just falling apart . And I'm really concerned that eventually they're going to have to do some more work .
Kaption that's a beautiful picture ! Thanks for sharing
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Gracie, you are doing the right thing by taking care of your dental work now. As for later, just hope for the best. Although it does occur (like inme and Carolyn), it is still a pretty rare SE. The benefit of being in Xgeva does outweigh the risk, IMO.
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Stefajoy thanks for answering 😊 It's so hard sometimes to know what exactly to do... I guess most of us are just living with the best decisions we can make. I think part of the reason why I'm so nervous about this osteonecrosis , is that my brother has stage four head and neck cancer and he lost half of his jaw. And I watched him have to go through surgery to try to rebuild his jaw and I know what that was like . So I guess it's probably normal for me to be a little more worried about it because of all of that, although he had a completely different type of cancer and his cancer was actually in the jawbone it wasn't because he had osteonecrosis . So it really is a completely different type of situation but still I worry about stuff like that. Thanks again for answering
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hi lita57. I'm a stage iv with mets to a lot ad areas in my bones. My onco wants to put me on xeloda and I was wondering how you are making out on the drug as far as side effects go and is it working for you? I haven't really had any meds, I have been working hard doing things the natural way but that gets expensive and I think I'm ready for the conventional treatments and see how that goes
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Hi, awilson ~ I know your posts is addressed to lita57, and I hope she'll see it and reply to you about Xeloda. In the mean time, I wanted to welcome you to the Bone Mets thread.
I realize your diagnosis isn't yet filled in (you can do that on your bio page), but I'm wondering why your onc is suggesting a chemo like Xeloda as a possible initial conventional med? Are you ER- or TNBC, or do you have mets somewhere beyond bone? I'm asking because in the US at least, Xeloda -- while a good chemo -- would not be the first tx recommendation for many of us with bone mets only. So I'm just curious why it's been suggested for you at this point.
Beautiful photo, Kaption! Thanks so much for sharing it. Scenes like that truly help me remember that God (or whatever one's personal greater power might be) is in control.
And Babs, the flowers are so elegant! And I loved hearing about your daughter's boyfriend. So happy for her and your family!
MomATT & Dani, you are always in my thoughts and prayers, as is everyone here!
I hope everyone's able to get out and have some fun this weekend! Deanna
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Awilson: I have bone mets and organ mets, so that's why I'm on Xeloda. I'm doing pretty well on it as far as SE's go. I only have three more cycles to go HOORAY! Last CT showed the liver mets shrinking slightly (but I was only about a third of the way done when they did the 1st follow up CT).
Everyone's body responds to Tx differently, and I can attest it hasn't been a total walk in the park. What works for me is NOT to eat any raw vegetables - which is tough cuz I love salads and crudites w/ hummus - that keeps the diarrhea at bay. Just about everyone gets the "hand/foot syndrome" which can be managed by repeatedly slathering one's hands and feet w/moisturizing cream NOT lotion...lotion's too thin. Wear socks to bed so you don't get goop all over your sheets, and wearing cotton gloves to bed w/cream will keep your hands from getting too bad
). There's a forum that talks about SE's, so go there for more info ).Deanna: MO and I decided on pill-form chemo cuz I wouldn't have the dry heaving/vomiting associated with Taxol/Taxotere, etc. When your back is as bad as mine is (w/five compression fractures, bulging discs, degenerative arthritis, etc.) you do NOT want to be dry heaving. She put me on a very high dose to start: 4000 mg/day (8 pills), and after 3 cycles, dropped it to 3000 mg/day (6 pills). We were concerned about increasing cardio toxicity (I have a heart condition, too, sadly), so that's part of the reason for the decrease in Tx.
Take care,
Lita
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I'm going to make an "I'm dying to tell you about Metastatic Breast Cancer" shirt to wear during the month of October and whenever else I want to. ha ha I found V-neck shirts that can be worn to chemo. Minimum order is 50 shirts. I was wondering for those that are interested, could you just leave a response? No pressure. I just want an idea of if I can reach 50 and I will make the campaign public on my facebook page so you can share as you like. I'm going to attach a fundraiser for the metsquerade to it. It's my birthday gift to myself. To all of us really. Tomorrow is my birthday so I'm going to start the campaign tomorrow. I hope everyone is doing well. I think of you daily. All of you and what wonderful women you are and how much you helped me when I was first diagnosed last year. XO
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Hello Bone Mets Ladies,
Would love some prayers for my wife, KD.
She's having spinal fusion surgery tomorrow. They are putting rods and screws in to fuse her C5-T4 vertebrae. Her T-2 has a really bad compression fracture that they couldn't treat with a Kyphoplasty.
Busy packing bags now for a 3-4 night stay at the neurological surgery hospital. I'm supposed to be the strong one, but I've been a nervous wreck all day. Just what my wife and boys need, right? :-(
So, prayers for me also if you will. :-)
KD still is resistant to get engaged with BCO, but I participate and share many inspiring things that I readwith her. Thank you for sharing your experiences and hope with us.
Louis
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Louis-
You and KD are in my prayers. Please keep us posted!
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Louis -
KD, your boys and you are in my thoughts. You are stronger than you think! Hang in there. Lean on us. We're here for you. Sending love and healing your way!
Cathy
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Louis,
So wonderful of you to post for your wife
I'm sure you are a great comfort to her. Your family is in my prayers!
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Louis, KD and all of your family are in my prayers. She is so lucky to have you advocate for her. Believe in the power of prayer, I believe it really does work. I had so many people praying for me 25 yrs. ago when I first had BC and now once again I need their prayers and I can feel their power helping me to be strong again
Faith (in the future)
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Louis, I will be praying for KD, for you, and for a brilliant ortho surgeon on his best game tomorrow! Please stop back when you can and let us know how things have gone. In the meantime, feel the strength, peace of mind, and healing vibes coming at you and KD from all of us! Deanna
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KD, prayers for your wife for successful surgery and prayers for you for strength. Please let us know how things go.
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KD sending prayers for your wife's surgery. Hoping all goes well!!!! Please keep us posted.
Babs
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Louis, Thinking of you and KD today as she heads into surgery. Even though you and I have had some pm's, please let KD know that we are all here for both of you. If you have more questions for me, just pm me and I hope I've answered most of your questions. You are in good hands with your neurosurgeon. Speedy recovery for KD.
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Louis,
My thoughts and prayers are with you, your wife, and her surgical team as KD goes through surgery. I know how difficult this is for you. We are all here for you and will be with you in spirit today.
Lynne
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Louis, prayers for you both!
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Tomorrow morning is my first visit with my MO since my diagnosis. I've had several phone calls with her though. I'm also getting my first infusion of Zometa. I'm not on here often, because I feel like Debbie Downer. I was reading where someone said hearing about recurrence is like getting the diagnosis all over again - I feel the same way right now, as I just got a reminder phone call for my appointment and that I need to go get lab work done today. Surreal.
Seeing pictures and reading all the posts take my mind off things for a while.
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Does anyone here read Uzma Yunus' blog, Left Boob Gone Rogue? She's an MD whose bc became mbc earlier this year. Lots of great posts that mirror so many of our thoughts and moods. Here's her latest. https://uzmamd.com/2016/09/08/i-said-to-her-the-on...
Good luck tomorrow, Silviah. And never worrying about being a Debbie Downer. We've all been there -- especially in the beginning, as you are now. And we all still have our days. That's what's so powerful about BCO -- just knowing you're not alone can be an immense help.
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Louis - hope the surgery went well today and that your wife has a great recovery with reduced pain!
Silviah - Deanna is right! We all vent and this is a place where everyone understands.
Question for the group...I'm still doing physical therapy in hopes of reducing pain due to mets that have narrowed the nerve passageways in the sacrum and lumbar areas. We are hoping to strength the core muscles to reduce the workload of the now degenerated discs and the extra bone from mets that have healed. My orthopedic doc can give me a cortisone injection to reduce the inflammation if the PT doesn't begin showing results soon. Checking with my Onc to see if that is ok with him. Has anyone here tried that and if so, how did it go? Any issues with interactions with Femara and Ibrance?
Also have started eating more vegetarian, low inflamatory diet and lifting some light weights again. Swimming 4-6 times a week. It does help with fatigue and spaciness! I feel like getting as strong as possible may make it easier to hang on to stable status for a bit longer. My Onc said that the next scan in three months will be a PET rather than CT. That will be at the one year since DX mark and actually is a bit scary as I feel that things are changing, but they never show on the scans.
Thinking of you all and hoping for peaceful, pain free days!
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Silviah, I agree with Deanna and Kathryn. Post whatever news or concerns you want. Debbie Downers and Gloomy Guses are as welcome here as Sally Sunshines and Sammy Smiles. We all feel those ups and downs, and we help each other through the difficult periods. I have been a Debbie Downer many times on this very thread. I have never found resistance or complaints about my feelings. Instead I have received kindness, support, and friendship. We are here for each other. When will you have the results of your lab tests? We all get nervous when we have tests and scans. It forces us off that river of denial that Aurora guided me to.
Deanna, Thank you for posting that link. How have you been feeling? I haven't noticed as many posts from you lately. I hope that is because you are too busy living life.
Kathryn, I applaud your efforts to take positive steps to remain stable. Diet and exercise are so important. Exercise, in particular, can have a significant effect on my mind as well as my energy level. I do believe that it stimulate our immune systems.
Louis, I hope that KD is recovering from her surgery comfortably. How long was the operation? Did you have someone with you to support you and keep you company during the procedure? I know how stressful it can be. I will continue to pray for KD and you.
Lynne
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Thank you all for the prayers and concern.
The neurosurgeon said that the surgery went "better than perfect"!!! He said that KD no longer needs her brace. He had originally told her to expect to have to wear it at least a month post-surgery as a precaution.
Now, a couple of nights in the hospital, then back home for more recovery. Maybe KD can get back to sleeping in a bed again, rather than her recliner? Please let that be true.
We are beyond overjoyed!!! AMEN.
Louis
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Louis, That is fantastic news. There is nothing that exceeds "better than perfect"!Thank you for letting us know. I am sure you had many other things on your mind. You remain in my prayers. Please let KD know that we all wish her a speedy recovery.
Lynne
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