Bone Mets Thread
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deanna. I hope the get your Ibrance straightened out asap. I have taken exgeva foir over s year now but have not had any side effects or pain at injection site.
Lovesmaltes - great to hear you are feeling great this am !
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Patty- Well said. Thank you for lifting us up.
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Wendy, I thought of you when I just read this. https://www.minds.com/blog/view/527535136779022336...
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Hi Ladies, It has been a couple of weeks since I've last been on BCO - definitely a lot to catch up on. Hope no one is feeling too much pain and all of your TMs are way down. It is very saddening to see the loss of another member and my thoughts go out to her family as well as to you all that were close to her.
I know I am too far behind to address you all individually but wanted to say to Patty - congrats for being 2 1/2 years out. Looking forward to the 20 1/2 years out post in the future
My mom is finished with radiation and had some terrible tumor flares. Some painful and discouraging days and I tried so hard to keep her positive. She had to get xrays for fear of some fractures and all were fine (thank God!). She may get the clearance tomorrow to go back to work on a reduced schedule which is great. She will also get more results as to how radiation went tomorrow as well. Still sticking to the Falsodex and I'm just hoping the tumors are shrinking after this first round of treatments. We email frequently and I call her often - I know it cheers her up but definitely hard to see this affecting her, mentally. She still hasn't shared the news with anyone outside of the family and I'm encouraging her to do so, we are all here for her.
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Deanna- The xgeva did give me some odd pain and MO confirmed that it may, especially first time. More so for me this last time (was third time) I think it may all depend where you are in treatment etc and I can only imagine what havoc it has on healing bones. If you read up on the drug it does have that side effect. It does not hurt at all to get the shot, or least me.. I get it the upper arm and it doesn't even cause me to grimace. I hope all goes well with you!!
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PattyP - glad to hear you kept the oatmeal down. Also, congrats on 2 1/2 years. Dealing with this disease does bring the most important things into sharper focus, like birthdays, holiday's and family time.
Wendy - I tried the coconut sugar this morning in my coffee and really liked it. Haven't had any soda in 2 mos. and am working on doing better with my diet.
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This pick may get me in a lot of trouble idk but Jazzy I hope this helps. Yeah coconut sugar is awesome. It's also sugar but at least you get some nutritional value besides. So this is the vial of oil I use . There has to be something to this I have been reading way to many positive stories for it not to be. I think it's very important to get knowledgable people to make sure you are taking the right dose and the right strain. I also take straight CBD capsules four times a day. Good luck.
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Wendy3, thanks for posting that picture. I think many are interested but not sure and there is a lot of confusing info out there. Even if you want to try this, it's hard to figure out what is legit info/source and who is someone just trying to make a buck.
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Patty thank you for your post!
Deanna I get the xgeva in my stomach and really don't feel it. I have no se's yet and I've had 3 shots thus far
Wendy. My cousin was telling me about the oil just last night. Will ask my mo the end of the month when I see her
There's more that I learn here than from any dr!!!!
Babs
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I am in the process of getting everything in order to see a physician that is qualified to approve you for MM -- New York State Dept of Health HAS NOT published a list of participating physicians yet although the program is ready to go. I believe there are 3-4 places where you can go to purchase it. Luckily, I researched till I did find a doctor that is reputable in the city that I will be seeing next week. Which is over a 3 hours commute each way. Anyone from NYS? This is the information I have learned.
First you have to see a doctor to quality. (this is where the bottle neck is because they have not released that information) Once you get the authorization from your doctor, you have to register on line with NYSDOH to obtain your card that legalizes you to purchase the products. From what I can find, right now there is a place to purchase in NYC and one in Albany,NY Kingston, NY and 2 more opening in Western NY.
In the interim, (a week ago) I did purchase Charlottes Web and started that. The problem I have found with dispensaries is that I do not see where they offer the non activated THC - which is what I ultimately would like.
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Hey Patty, your post says it all! And congrats on your 2 1/2 yr anniversary!
Deanna - I'm having my 4rth shot of Xgeva tomorrow. Felt a bit crappy the first 2 months (fatigue, joint pain and nausea) but pleased to say that last month was almost a walk in the park.
Daughterlove - First time I had rads, I had a very bad pain flare for about 2-3 weeks. The rad Onc told me this was a possibility and gave me adequate pain meds. Other times I had almost instant pain relief.
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My DH was released from the hospital today, and we are now back home. It feels so good. He is still very weak, and it will take him time to get his strength back, but it just feels so good to have him back. He went through so much during the past 30 days. Thank you for all the support and prayers.
Lynne
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Lynne- There's no place like home. I hope his strength returns quickly thanks for sharing the positive news
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(((Lynne))) Thanks for letting us know! And tell him to please be careful until he gets much stronger and regains his core strength and balance! If he's like most men, he won't heed the advice to use a walker or let you help him when he may need that kind of help for a few days. But I'm sure the two of you and your whole family are all breathing a huge collective sigh of relief!
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Wendy - Thanks so much for the pic. I see my MO on Feb. 4th, so I will have the Oregon State application filled out and ready for her to sign. Here it costs $200 just to get your MM card, but if you get food stamps, SSI or are a Veteran, the fee is considerably lower.
Lynne - Ahhh! to be able to sleep your your own bed w/ your own pillow, plus not being woken up every several hours by nurses, etc. is pure bliss. I hope you and your hubby recoup smoothly.
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Lynne, there's no place like home! Hopefully your hubby can rest and get his strength back. You have both been through so much. Patty, congrats on 2 1/2 years!! Every day counts, and soon the years will go by. Here's to many more years!!
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Hi everyone! I hope all is well with you all and good reports keep coming. Has anyone ever been given any type of prognosis with her 2 positive cancer? Especially with extensive bone mets.... I Know the oncologist is a very optimistic person, but there is reality!!
Much love to everyone.
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Lynne , that's great news that must be a huge relief for you. You have been so brave through this all I can't imagine how I would deal with it. Enjoy yourselves now he's back where he belongs😊
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I will also post pictures of the CBD THC products I use here in Colorado.
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Lynn, I am so happy to hear that you are both home. Now you can both rest and put the worst of it behind you.
Patty, congrats! 21/2 years!!! Loved your post
I have been busy organizing around the house. I have a couple of projects that had been left unfinished. My oldest daughter is pregnant with our second grandchild. And has been around more often lately. Seems like there is always something or someone keeping me busy. I do read every night. I pray for all of us daily. Hugs all around! Chelle.
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Lynn
So happy that you're both home. Now just don't overdo and enjoy sleeping in your own bed!
Babs
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Lynne,
Hooray or home! I bet your husband will be able to heal and regain his strength much better in the comfort of his own space and your TLC
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The new
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Lynne, Happy to hear that you and your dh are finally home after such a long time away. Hope his recovery goes smoothly for both of you.
I may be in a clinical trial called EAY131 or also called the National Cancer Institute Analysis for Therapy Choice ( NCI-MATCH) which is focused on tailoring treatment based on the characteristics of each individual. Certain drugs are matched to the individual's specific abnormalities and the trial will explore treating patients based on their molecular profiles of their tumors. It is a nationwide clinical trial, so just wanted to pass that on. More info at www.cancer.gov
Myra, How are you? Have you started rads yet? Check in with us if you are reading.
Good day to all....
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Lynne, how was your first night at home? Nothing like it huh? Hoping for a speedy recovery for dh.
LindaL - very, very interesting. Hope you get to join that clinical trial.
Hugs to all
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Hello to all,
Lynne, what great news to hear you and dh are home now. No place like it! How are you both feeling today? Prayers for a speedy recovery. Enjoy each other's company in the comforts of your own home.
Lindalou, that sounds exciting. I will have to ask my onc about it at my next visit.
Chelle and Wendy, thanks for sharing those pics. I've always been interested in how it was packaged and what different forms you could get it in.
Hugs to all, Annie
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Chelle-thanks for your pictures.
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Lindalou- the trial sounds exciting!! Keep us posted! Thanks for sharing.0
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lynne. Glad you are both hone finally. Still praying for a speedy recovery
Lindalou - sounds promising. Good luck !
My dss are enjoying a snow day today. Well actually ice. I think we got 1\4 " sleet last night. Calling for the same tonight and then snow friday. Thinking school will probably be closed til Monday. Coming from IL it seems funny to close everything based on that small amount of ice or snow but most people here don't know how to drive in it. And they don't have the correct road equipment . oh well. I'll enjoy time with dss. Ds2 went to work with dh today and ds1 is hanging with me. Thinking about making some crock pot chili for supper. Nice hot meal on such a cold day with little effort from me. Sounds perfect. Maybe a cake too. Yum yum.
Hugs to all. Hope everyone is staying warm today
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