Bone Mets Thread
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happy for your news Babs!
I had my unilateral MX last week and got a good pathology report back. It seems I had a good response to the chemo. No surprises in terms of receptor type. And I'm lucky to be healing well. So very grateful, I'll see my Mo next week and see what his thoughts are on how this confirms or changed our plan. Also started Xgeva and that's been totally fine so far. Next up, rads.
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Jennifer, I am happy to hear that the pathology report looks good and that chemo is working. How are you feeling?
Lynne
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Jen. Glad to hear all went well with your mx and that the path report was good. Each hurdle we pass w/ o issues is great!!!!
Lynne glad to hear all went wellwith the zapping of your kidney stone!!!!!
Deanna thanks again for putting the unlisted list. It is greatly appreciated by us all
To all. Thanks for the cheers about my TMs
Babs
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Lynne, I'm feeling good and very grateful to my body for holding up through all of this
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My 5 year old granddaughter, Elinor enjoyed her long-awaited birthday present from me. Yesterday I took her to a ranch so she could enjoy herself and 5 horses. We groomed and fed them, enjoyed a picnic lunch and then of course a ride. Here's a photo of Ellie in her element. I had horses when I was a teen and then competed in dressage and jumping in my 20's and 30's so I know where she gets her love of these magnificent and loving creatures.
I know there are other horse lovers out there. I've seen your photos and never tire of them.Amy
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Lynne- Glad the zapping is over. I have a bunch of calcifications in my left kidney... and the cat scan from 3 months ago also showed that I had a pinch or whatever they called it in both of my ureter's. Radiologist also noted to watch because of MBC and when I had scans done last week there was no mention of it this time. MO thinks I prob passed a small stone and if I did I didn't know it. She also told me not to worry at the time so I listened to her and all is well..
Jen- glad you got a great report!
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Lynne, glad to hear you're doing well after the kidney stone episode. Jen, so glad to hear you got a good report and are doing well after the MX. Amy, beautiful granddaughter and beautiful horses!
Deanna, thanks so much for the list. So appreciate you taking the time to do this for all of us, as well as all your words of wisdom and encouragement.
What's the difference between QiGong and Tai Chi?
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Energy, or Qi, is the focus of both Tai Chi and Qi Gong. In both styles, the practitioner uses visualization, breathing and body movement to guide the circulation of Qi as it moves through and around the body. However, Tai Chi has a more overt emphasis on the martial aspects of the training. Each Tai Chi motion has a specific combative application, and thus can theoretically be used for self-defense. Not all Qi Gong motions are like this as most exist solely for the purpose of meditation, health and healing.
I hope this helps, it's the best explanation I could find to show the difference between the two.
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Hi all!
Lynne, happy to hear that all went well with your procedure! yay! I know what you mean about never had scans or anything. I was healthy as anything for my whole life & then "bam" all of a sudden!
Jen, I too am very glad to hear that your MX & pathology was good. Take care healing, it can be hard to not do too much at first.
Amy, love the pic of your little cowgirl! I had a horse when I was a teen & loved it, I was a barrel racer.
I am going to have to look up this Qi Gong & see what's it's all about. thanks for explaining it Annie.
Still looking for some more questions if anyone can think of any for the trial MO. thanks everyone! cheers, dee
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Hi all...been gone a long time, and I'm way far behind and will likely never catch up. But wanted to check in and say hello and thanks to those of you who reached out to check on me. I'm doing well, just arthritis and winter kicking my behind a bit.
I see my MO next week. Was hoping to have bloods done before I saw him, but the request hasn't arrived in the mail yet. Oh well. Amy - love the pic of your granddaughter and the horses. Babs - so happy your TMs are stable. Dee - bugger @ uncertainty. Where are you going on holiday? Ebru - great to see you post! And hello and hugs to all the rest of you.
I've been travelling for work way too much but have 2 weeks in a row at home! Mostly been going to Auckland, but also some trips to the South Island. The snow has arrived and it's gotten cold. One of our American kitties passed away 3 weeks ago. He had a brain tumour and it was time. However, I made the mistake of bringing a kitten home (ad said: Free 5 week old kitten - need it gone today or it goes in the river). Had intended to give it to Kitten Inn, but made the second mistake of leaving my husband home alone with her for 6 hours. By the time I returned, she had a name and a bed. So she's keeping us laughing and smiling. Other than that, it's just home repairs/remodelling, work, and the usual. I will try to get a bit more caught up soon.
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Terre so nice to see you back I totally understand you taking a break and enjoying your summer or fall. The kitten is adorable and a very lucky critter to have you and your hubby as a family.
Linda the studies other drug besides Ibrance which it isn't fully either it's a sister drug to Ibrance is Faslodex and if the study works for you I was told I could stay on the study for as long as the drug is working. Which for me is great considering the price of this drug.
Jennifer it's so nice to hear your good news yeah! Big hug
Amy love the horse picks saw my two horses yesterday too for the first time in a year. Since I'm in Canada now and they are still in Oregon at a friends farm. Lots of tears and horsy kisses the saddest thing for me is I whistled and they came running like I had never left. Broke my heart .
Deana thanks for the list will come in handy come Christmas
Lynne so glad the procedure went well and congrats on your one year I just had my one year as well. So high five to you😊
Dee barrel racing ..so cool I did not know that about you. That's a very hard discipline and always looks like such fun.
Hello to all I have missed and have a great Sunday
Wendy
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Terre that kitten is so cute! I'm sure she'll bring you a lot of love!
Babs
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Hello ladies! I received the updated contact list yesterday and a request to check in since I haven't been here for quite some time -- December I think. I'm doing very well, still on my first regime of Aromacin and Xgeva. MO says that works on average about 8 months; for me it's been a year and a half, so I am very grateful to be doing so well. My TM's are always 23 to 26 and everything is stable, so I pretty much live normally. I experienced some mild depression a few months after my dx last year, and have been successfully treated for it. After initially finding this thread extremely helpful and encouraging, I started to feel that being on here kept the cancer on my mind when I was trying to regain my equilibrium and not have it be front and center all the time. So I have been focusing on other things for now. I'm sure that I'll participate again in time, but not now. I'm enjoying the luxury of not paying much attention to cancer while I can. I know I won't always have that, so I'm enjoying it while I can. I do think of the wonderful women I have met here, and I know some are no longer with us, and I hope everyone is doing well. Those of you who are struggling are always in my prayers, and I hope the researchers come through for all of us one day soon. Thanks for the update Deanna. Blessings to all of you, and I'll see you later.
Sharon
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Hello, I have been on a much needed break so I too apologize for not being caught up at all here. I have a mapping appointment with my RO in a week then get ten days of zapping to a few of the worst spots in my spine, this will be my first ever radiation and I am a little nervous. The final spine zapping session is the morning of my next chemo so that will be a fun day (totally different hospital campuses, an hour and a half drive between). The good news is that I really like the RO and he says he can keep "spot welding (me) back together" for a long time so that makes me happy. I hope you are all feeling well, and I WILL try to catch up.
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LindaE was able to find the clinical trial that is being proposed for me. There are other centres in Canada taking participants. As Linda & I have pointed out, this may be the best way for us Canadians to be Ibrance unless you have a good drug plan. My MO told me that Ibrance is $6,000-$8,000 per month.
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GG27 -
That trial is a great option for you because everyone in the trial gets Ibrance. They are just testing dosage levels. Everyone either gets the highest dose or the next highest dose. They want to say if people who take 100mg have better results because they stay on it with less interruption. People (including myself) try to stay at the highest dose and soldier through the side effects. It would really be good to know if that is a good idea.
My doctor says she has seen Ibrance work well on bone mets.
Hope to see you soon on the Ibrance channel.
>Z<
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just poppin In to say hello. Am very glad to see it appears no deaths and no major progression for anyone. Hip hip hooray. !!!!
I am plugging along. Seems pain is with me 24/7. Family says I cry and moan and move constantly even in my sleep. I seen mo yesterday who changed some of my pain meds and increased others. Constant pain sure keeps me in an emotional funk. UGh. Such a hard fight. Really tired and ready to give up. No quality of life for along time.
Hugs
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Hi Patty,
It is such a treat to hear from you. We have all missed you. I am sorry that you continue to experience so much pain. Have you been to a pain specialist or palliative care doc who might be better able to control the pain? Are you still thinking of going to the cancer center that Deanna recommended for a second opinion? I imagine that these are questions you have heard before and don't want to hear again, but I am concerned about you and want you to have the best care possible. I can only imagine how hard it is for you to continue to this way when your energy is drained, but you know that none of us want you to give up. I wish I had some answers for you.
I will keep you in my prayers. (((Hugs))).
Lynne
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Dee so this must be a different trial than I'm on seeing as it's not Ibrance per say with me but it's sister drug. I wish you tons of like with your choice which ever way you go. Sounds to me like you've decided to go ahead with it eh? What an exciting trip you are going to make. Would love to take hubby across Canada too miss Nova Scotia and the maritimes over all.
Patty you are so strong you are a constant reminder to me on how to fight the good fight. Do get that second opinion it can't hurt right? Another doc may have a whole different thinking on how to tackle your pain. That needs to go asap I will be praying for you and sending all the good mojo your way.
Wendy
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Patty Pretty Peppermint - So happy to hear from you- Maybe the new switch in meds will give us a new post from you soon saying you are feeling better. My heart aches when I read you are suffering. I am willing to take some of that pain from you if I could- I promise that I will devote a complete rosary to only you tonight . You are always in my prayers as is everyone that is here fighting this disease.
I am EST and will be saying my prayers for you around 9pm if anyone else wants to join in at that time that believes in prayer.
Hugs, Carol
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Hi Patty
So happy to hear from you but wish you were feeling better. I think Lynne's suggestion is right- maybe it's time to see a pain specialist or a palliative care doctor.
Sending you healing hugs
Babs
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Patty, I second & third the suggestions of seeing a pain Dr. I know it's hard when you're in pain, but palliative care is supposed to help you live better without pain. ((hugs))
Wendy, this is a brand new trial. Everyone get Ibrance, just different dosages. I won't be making a decision until after the 14th. I don't know yet if I even qualify, but as soon as I get some more information, I will post it here. Not looking forward to all the traveling back & forth with the ferries, but it is what it is.
Supposed to be stinky hot here (for here) 31C - 88F ugh... never gets this hot here, ugh again. cheers, dee
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I agree with Wendy3
Maybe a 2nd opinion would help gets things better under control. I see you live in AZ. I live in NC. I got a 2nd opinion from my orig dx at the cancer treatment centers of America . They are very good at managing your pain and emotional symptoms. I believe there is on in AZ. I believe if I had not gone to the cancer treatment centers of America I would not have handled the chemo, surg and bond pain from my spind mets so well. Hope you feel better soon!
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Dee yes all that travelling can be a pain , though the view from the ferry is so beautiful. Just remember I am five minutes from the hospital so if you want to meet up for a coffee or lunch just let me know
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this thread is flying beyond light speed, can't catch you girls!
Barbs just saw your happy news on TMs, firfers crossed as mine are to be announced on Monday.
Meanwhile, I fell hard on both knees and my arm was hurt as well. Not feeling good, can't wall comfortably.. Dread to go to doc and find out things are bad:(( I lay as much as possible praying for self- healing
/ not in the mood to shave anyway )) Please don't fall down, not good..
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Ebru, Ouch! I am sorry to hear that you fell. It is so easy to do, and it can be painful. I am hoping for quick helming for you. I am sending good vibes to you for positive results on your TMs.
Lynne
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Ebro-hoping your TM's are down down down! So sorry about your fall!
I was in Istanbul last summer and loved it! What an amazing city!!!!
Babs
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Hello my dear fellow bone metsers (metsters?), could not believe I was 7 pages behind and need to leave already for now to prepare our Sunday dinner that my husband has been hightly anticipated with great faith and hope to be a nice one. A quick note. Christina, wish you great success with your next treatment! Dee, glad that you are OK! And glad that all others are OK! Welcome, Stilts. Best wishes to all!
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6:05 in Prescott, AZ...so glad I just saw Carol's post. Joining with her to lift you up in prayer, Patty.
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Patty - I saw Blossoms note about Cancer Treatment Centers of America and that is where I went... to the one near you, in Goodyear, AZ. I flew down there every three weeks for a year and a half. That place literally saved my life; I can't say enough good things about it... and the first thing they did was get my pain under control. I literally miss going there... we were in Scottsdale last week for vacation and I wanted to stop by. (my husband thought I was crazy, so we didn't.) Anyway...I do hope you'll think about considering it.
Ebru - so sorry you fell down, and praying those TM's are good tomorrow! (is it today where you are?)
Deanna - thank you for the updated list! Maybe I've already said that....I can't keep up with this thread.
Terre - so nice to see you back and glad you are home for a while!
Also - thanks to everyone for the info on Qigong and Radical Remission...I am ordering the DVD's this week and buying the book soon too.
XO
Andrea
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