Bone Mets Thread
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Go get them Gracie! Good luck!
Ronnie
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lita~ 💐💜sounds like a good plan lazy boy ! Yeah!
Hugs ~M
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i'm home. I did the treadmill all by myself without them having to give me that shot yay!!! It really wasn't nearly as frightening or scary or hard as I thought it was going to be. Won't get any answers back from it until the Doctor looks at the results. But I am feeling pretty darn good that I did it
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I don't know how you all do so well. I am having radiation (again) on left hip and feeling terribly tired and nauseous after only 3 treatments. I don't know how I will stand another 7. Seems worse than before.
I love reading your positive attitudes! I normally am positive, just having a bad day.
Thanks for listening. I will try to keep up with you all.
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Claudia, have them give u something for the nausea. Zofran helps some of us. Take it an hour b4 your rads appt. I didn't take mine at the right time on Monday, and was dry heaving for hours 😝. Now I know better.
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Lita-liked both your body guards!!! Loved the flowers! Hope you start to get some relief soon.
Linda E glad your brain scan was clear but I know you'll feel better once you know what the heck is going on.
Z-yes, that's the study. Thank you for explaining the basics to me. They sent me information on the study this afternoon. I really need to know why they think I'm a good candidate for this particular study and what the time commitment will be for me.Will keep you posted as they tell me more.
Babs
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Claudia - Lita seems to be able to keep her spirits up through nausea and pain, but most of us get pretty down. Hang in there. You will get through. One day, one hour, one second at a time. Please keep checking in and let us know how your symptoms are doing. Try a short walk, despite the fatigue. 10 minutes? A walk around the block? The key is to sleep well or at least as well as you can and a bit of movement can make a big difference.
Gracie - You go girl! I briefly contemplated what you went through today ... a shot? a treadmill? and freaked myself out. I do not what to know, but so glad it is behind you.
>Z<
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z. I decided not to be part of this trial. It is a phase 1 study where it's open to patients with all kinds of cancers.i would have tone off all treatment for 28 days. I would be the first bc patient. It is a huge time commitment and would cause me to be out of work a lot. I would do that for something known to help bc or more targeted for me but I can't be out of work that much for something with no data
Gemzar here I come!
Babs
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Babs, I would probably make the same decision in your place. Phase 1 trials are an overwhelming prospect to me. Being the first bc participant, while I realize that someone has to be first, would be scary. I hope gemzar zaps those cancer cells into dust. Hugs and prayers to you.
Lynne
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Thanks Lynne!!!
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Hey ladies. I started faslodex yesterday and mo wants me to start on ibrance and xgeva. I have ti see a dentist and get all dental wirk done first. My mouth is a mess and i grind my teeth so im tripping on the side effects. Has anybody been on xgeva and not had jaw problems. Is there a thread just for xgeva. I couldnt find one. Thanks fir any info and I pray everyone is well
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Mel~I have TMJ and my only answer to prevent my headaches and issues was Valium at night and a mouth guard to help prevent jaw movement! It helped tremendously and all the problems I had went away. I have been on XGeva for six months and I have not had any jaw issues what so ever! I had a tooth fixed last week and I told them about my issues and I called my oncs office before I went to have the tooth fixed. They said as long as they don't have to drill into the jaw bone itself you would be ok. So far so good with the jaw issues. Good luck and hope you're also going to do well. With the ibrance and XGeva combo. I was told from the X-rays that my bone densities were excellent! Get the dental work moving and I'll be sending prayers your way. ~M~
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Thank you Micmel.
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It's a breezy, sunny day today, and I just finished 7th rad treatment. Yes, I'm still in pain, but I'm optimistic the rads will help with time. Lovely fountain outside the radiation clinic cheered Sofia and me up. Off to get some breakfast while I still have an appetite and before Mr. Colon gets upset again. Yesterday was a FIVE-toilet emoji alarm day 🚽🚽🚽🚽🚽. Hope it's better today.
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lita~ there is that smile ! The blue sky behind you looks so pretty. I haven't seen a blue sky like that in a while ! Loving it. 7th treatment you go girl !! I can't wait till you're done! Hugs! Love the Lil doggie sof! ~M~
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Great picture Lita. Here's to sunny days only ahead and less pain!
Babs
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Lita, you look great! Pet Sofia for me 🙂🐶
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Thank you for the info Lita! I will do that.
I love your cart! You should decorate it all up!
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Mel, I had xegeva for 2 years and developed Osteonecrosis. Been stable with out for 3 yrs and am told it is rare. I would do it again.
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z, I am in awe of lit a and her attitude! Also was wondering how you run? I was told absolutely no. Of course I was also told not to ride my horse but do anyway. Whatever makes us happy as long as we're safe, right?
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Lita,
Great picture I hope you had a nice breakfast!
Ronnie
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Hi all, I try to keep up with you, but it
is overwhelming! You are all so inspiring, and I don't know where your energy comes from! You have all been a tremendous help to me and I feel guilty for taking it all in and not contributing much.
Melanie, I've been on Xgeva for two and a half years with no problems. I had to have a cracked tooth pulled a year ago and they just stopped the "X" 6 weeks before extraction and started again 6 weeks after. However, I now have a hole where the tooth was because a bridge was not advised as it would weaken the teeth next to it, and an implant is out of the question. Fortunately, it was a back molar and it isn't noticeable. I have had no problems with SEs from Xgeva - it has been my miracle drug. I had two small fractures in my pelvis and could hardly walk when extensive bone mets were diagnosed. Within 6 weeks of treatment with Xgeva, Afinitor, and Femara I was feeling "normal" again. Walking miles, feeling good, no pain. Of course, it wasn't all the Xgeva, but X was instrumental in the bone healing. I am now on Ibrance and Faslodex along with the X, just starting my 2nd cycle so we can go down this road together. So far fatigue and dropping cell counts are only problem.
Lita, love the picture! And hugs to everyone. I'm holding you all in my heart. I'm here even though you may not hear from me often.
Mary
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Thank you ladies. Bigbhome how did you treat the jaw necrosis. What was the sympton
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Lita you look absolutely fabulous!!! Hoping and praying the radiation kicks the heck out of that cancer
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Lita- love your pictures with Sofia !!!---I am crazy about bulldogs !!!- My "Grandpuppy" Petunia is a rescue English bulldog. She was very over-bred and not well taken care of before my DD got a hold of her. She has a serious habit of chewing on and eating anything she can get a hold of. This has resulted in a bowel blockage several months ago (fortunately she recovered) and this week she ate some of the product that is used on grass to keep it green after dog urine gets to it...so she wound up in doggie ICU with IVs and meds to counteract the poisoning !!! There's always something with that dog ! Will post her picture when I figure out how to do it !
Hugs to all from beautiful Minnesota....Stilts
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Lita - You rock. You look fabulous. Keep going! I am so impressed.
Babs - Gemzar is easier, proven, you can start immediately. The less time we can spend at the hospital the better. Good choice. I would watch that trial, ask how the MBC patients do. It's an interesting trial... maybe for down the road.
Bigbhome - I have one small dead met in my sternum and that's it for bone mets. Part of me believes what the see is an artifact of the PET scan and not a met... it's a bone on the surface and therefore a common place for false positives in PET scans. They claim to see it in the CT/Bone scan ... but only after I tell them to go back and look for it. I show them my PET scan and they go back and say "oh yeah, there a tiny little thingy there". I am suspicious. I hang out here because I like the people ...
So, don't look at what I do for exercise as a model for bone metsters. I do think you have to take additional care with extensive bone mets. I like running but really not worth it if there is any risk of injuring yourself. Walking is perfectly fine exercise. Swimming, water aerobics ... awesome too. Biking? Lots of options to move and take care of yourself.
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mel, I lost a piece of bone inn the roof of my mouth. Fortunately everything closed up after and I only have aching rarely inn jaw. Worth the benefits.
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mel, I lost a piece of bone inn the roof of my mouth. Fortunately everything closed up after and I only have aching rarely inn jaw. Worth the benefits.
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Lita love all the pics your husband looks like a real sweat man and you're looking really great I hope the radiation gives you some relief. Did the roses have a strong scent? yellow and orange ones smell usually the stongest.😊
So still plugging away , had a great idea yesterday and went paddling with my dragon boat team. I'm finding the restrictions my body is giving me right now extremely frustrating. My energy level is so low I couldn't paddled one race piece through to the end. But I was proud of getting myself down there and doing the warmups...so sad. The other issues I'm having is keeping weight on any tips there? My poor husband keeps trying to fatten me up and the next day I'm either the same or lower.
I wish all of you a pain free peaceful Sunda
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Oooh, this thread moves too fast, cannot keep up!
BABS- Thanks so much for pointing out this new clinical trial that was recommended to you, that drug was not on my radar at all
And wow, for a clinical trial, this one is moving ahead very fast
Its based on exciting data in two papers that appeared in Nature last November, and is tests a PI3Kgamma-specific inhibitor (IPI549) alone and in combination with Opodivo- the drug converts pro-tumor immune cells to anti-tumor immune cells, which should make a lot more people respond to immunotherapy
Results of the small numbers of people in phase I look great, no side effects beyond what was expected (which are so low in immunotherapy anyway) and they do see activity of the drug even as monotherapy- no idea how effective it is until you get to phase two, but definitely keep an eye on this trial, this drug is the only PI3Kgamma inhibitor thus far identified
Here is a link:
http://phx.corporate-ir.net/phoenix.zhtml?c=121941...
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