Bone Mets Thread
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Babs, joining my voice to say progression sucks. I'm sorry to hear that. Hope your next tx is gentle on you.
Patty - I can see your smile through your posts! Who would have thought this a few months ago.
I had a bone scan today even though my last one was in late July. I've been asking MO to increase my meds for recurring but intense pain in existing mets. Results on 3 Oct.
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Babs, indeed this rots - I am certain there are many options for you and will keep my fingers and toes crossed they work.
Linda, good luck with your bone scan. Please keep us posted.
I had an MRI today to sort out arthritis in my hip versus bone mets. My results will be known Monday or Tuesday.
Have a good weekend all.
Amy
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Should we change this thread to "Rotten Bone Mets" ? Or better yet "FN Rotten Cancer"? Praying for good results for both Amy and Linda.
ROAR
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I vote "Yes" to changing it to "Effin' Rotten Cancer"!
L
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Amy & Linda- hoping for great results for you both!
Thanks all for your support. My MO just called and she's thinking about a trial for me ( sending me the info on Monday) or IV chemo- maybe Xeloda plus some other drugs ( again sending me the info on Monday). We're meeting on Thursday, her first day back after the conference she's going to
Will keep you all posted. Wishing everyone a good weekend
Babs
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Babs, Sorry for what you are going through but it's encouraging that your MO is right on the ball with you and will have a plan for you on Thursday. Let us know what she has to say.
Amy and LInda, It's hard to wait I know. Hoping that both of you get some good results as you are dealing with added pain right now.
FN Rotten Cancer is right! I saw a bumper sticker that said just that the other day while I was at a gas station. There are lots of us out there.
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Hello everyone, once again I am way far behind. I must start by saying effen cancer sucks the big one! I am sorry to hear of progression! This really is one wild roller coaster ride! I am not liking this ride very much!
Babs- geez! I would have thought Ned would stick around a while. But I bet he's back soon!
Mom- there are no words❤️❤️❤️
Patty-😊🎡🍦🍡soo happy to hear that you are feeling good!!
I had an MRI and a PET at the beginning of September. Tamoxifen is still keeping those little suckers in a coma. It has been 13 months on my first line treatment. All good news except now, they want to do the double mx. I'm a little freaked out by it. Any educated thoughts on why they would want to do this? I know that they feel as if it will lend to my progression free survival. But I have read varying results. What kind of recovery should I expect? I have my grandpa here with me. He has pneumonia and is on hospice.can my Mom and Husband handle all of this? I have not had surgery since I was four years old getting my tonsils out. I have no idea what to expect. Any advice would be greatly appreciated!! All of you are in my thoughts and prayers daily!! Love Chelle.
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Hi all
It just seems like the scanning time of year. I am scheduled for an eyes to thighs pet scan and brain mri next week and get results oct 5. I used to want a pet scan in my basement cause the first two scans were so good. The last two have shown progression. I am hoping these scans are good and I can continue afinitor and extemestane. If not I can think about the Embraca trial or other options closer to home.
I rejoice in Party's great news. Amy and Linda I have my fingers and toes crossed for all of us. Lemondrop welcome to this very supportive informative group.
Chelle I had two separate single masectomies at my stage 2 dx. I did both as outpatient procedures which some thought was crazy. I hate hospitals and I really did feel fine going home. The recovery took a while and I was greatful that people cooked for me for a couple weeks. I was greatful that my husband helped with the drains. I have the brca2 gene so the mastectomy decision was pretty clear for me. I wish you peace in making your decision.
I will be enjoying watching my son in a cross country meet tomorrow. So excited to see him happy.
Peace to all
Mary
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Sending Love to momallthetime and Dani.
Babs damn progression. I hope your team finds just the right next step.
Peace
Mary
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Chelle, I had a unilateral Mx in May and was surprised how good I felt the first two weeks after. I did have a wonderful meal train to help with dinners. It was around the third week I felt tired and it took a couple of more until I felt closer to my usual energy and mood. I needed very little pain meds. The key, I think, is to truly not push yourself the first few weeks after surgery so that you can heal well.
Would you do immediate recon or delayed? And are they talking rads too? I opted for delayed recon so I could get the best odds out of the rads. Recon is scheduled for Jan 24, 2017. Being flat on one side was not as hard for me as I thought it would be. I have a soft prosthetic that has done a good job serving as my foob. I even have some Sensation in areas. The first month there was a feeing of burning on my back due to the nerves they cut through - that was probably the worst part
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Thank you Mary and Jen! I have decided to just go flat and say goodbye to boob sweat forever! Maybe get a cool tattoo. Since it's a double mx, will I have enough use of an arm to say..... Wipe myself? Dear please God say yes!!!!
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Hi Chelle. I had a uni MX of the left breast last February and only stayed in the hospital one night. My BS said the surgery would be the easiest part of the whole tx and I thought she was crazy, but she was right. I was surprised at how quickly I healed and needed very few pain meds. By the 3rd day I was only taking extra-strength Tylenol and after the 4th, nothing. I didn't have recon either and am perfectly happy with my silicone prosthetic. Although mine was the left and I'm right-handed, I didn't have any issues with arm movement at all, so I think you should be fine for wiping, etc. They have you do exercises to keep your range of motion strong and these are key. I didn't have any issues with lifting things either, but they didn't want me lifting anything over 10 lbs. for 6 wks. The drain was what I dreaded most, but it turned out to not be a big deal at all. Where are you having surgery? (If you don't mind me asking.) I took off work for 5 weeks, but then caught a cold, so I took off another week. I rested a lot during that time and had pretty good energy. I actually could have returned to work sooner, but decided to take advantage of all the time prescribed. Edited: to say my surgery was at St. Anthony's in Lakewood.
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Happy fall! A little bit of autumn aspen trees from Colorado. Woke up to a first dusting of snow!
Arrgghh. I'm not ready.
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So pretty Barbara!
Chelsea.I had a single mx on my bc side and a year later I had a prophylactic mx on my right. On my left my lymph nodes were removed. Both times I was in the hospital for a day. The MXs were the easiest part of this journey!!! Just be very diligent about the exercises. I was told I'd never get back my full range of motion on my bc side but because I constantly did the exercises I did
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Thank you Stefanie. My tooth got so unbearable that my MO let me put CMF on hold 2 weeks, and get tooth extracted. At first my jaw hurt so much from extraction, that I wasn't sure I'd done the right thing. Now, two weeks later, I am glad I did. The swelling has gone down, and I can finally chew without pain. Dental pain is the worst! The dentist did add ONJ to my Release/Permission to Treat as a possible side effect. Thankfully, with two weeks off prior to the extraction, my WBC/ANC returned to within normal limits (WNL) so I didn't have as much of a risk for infection.
Bone mets are pervasive and harder to treat. The radiation I have done (2x) has helped on bone lesions. And will resume on Denosumab next week. God bless each of you with much pain free peace
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ChelleG: On one of the Ink Master shows (Spike TV with Chris Nunez), the tattoo contestants' challenge was to design and tattoo the chests of women who had had double mastectomies. It was a pretty good show. If I ever have to have a Mx, I'll probably do that (just get a cool tattoo). I've heard too many horror stories from women (my co-worker's daughter included) who went the reconstruction route and had infections, problems with the expanders, etc. Just doesn't seem worth it to me. It's probably my age...at almost 58, the girls (or the boys, as I call them
) have already outlived their useful life. If I were facing BC at 38, it'd be a different story, and I'd bite the bullet and give recon a chance.Akshelley: Yes, I've heard that bone mets can be pervasive, too. Not something I'm happy about. I have them all up and down my spine, my pelvic bones and hip bones. Been having trouble with my left shoulder, so I hope they haven't spread. I'll know in a month when I get my next CT scan. On a positive note, lots of women w/bone mets have lived longer than 5 years. Don't know how I'll do since I have mets in multiple organs now, too.
Once again we all just gotta take it one day at a time or we'll all go nuts with this miserable disease.
Lita
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Thanks for the advise. I will try to not sweat the small stuff. I see the breast surgeon on the third. Then I will have a date. I will definitely stay on top of the exercises. I want my arms to work. They see no lymph node involvement on scans, will they still be removing them? Are there any special pillows to buy? I have no recliner in our tiny apartment. I will have to be in our bed. Other threads say that a recliner is the only way to sleep.
Bjs- I'm having my surgery at Good Samaritan in Lafayette. Near Boulder. Love the Aspens! We are so blessed to live here! Check out this photo of the Maroon Bells I found on the news tonight. Simply breathtaking!!
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Chelle. You can buy a boyfriend pillow- it s the one with arms around you or just use bed pillows on your sides to sort of keep you in place so you don't turn over. I didn't have a recliner and had no problems. If there is no lymph node involvement they might only take the sentinel node but I don't know for sure
Babs
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Chelle,
I slept on my sofa with my back against the cushions to keep me from rolling over and that worked nicely as I had a BMX so I was supposed to be entirely on my back. By being slightly angled I felt the illusion of side sleeping, which I prefer, and I got a good nights sleep. I also used goose down pillows when I needed to prop my arm up or cushion my back.
Good luck.
Amy
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Good evening ladies and gent!
Babs - I am so sorry to hear of your progression !!! This rots for sure !!! Hoping they get you on a good treatment plan soon, and you get back to Ned !
Patty , i'm so glad to hear that you got two years on Femera. I hope that I get to years or longer ! I don't know I haven't read enough to know how many women get that kind of time . Glad also that you're having less pain that's great news !!
Bjs, Beautiful scenery thank you for sharing !
Well I had my root canal, they couldn't do the crown because I have TMJ and my both jaws cramped! I couldn't hardly open my mouth for two days ! Grrr! So I have to go back on the fourth and get the crown done , and now I have another tooth on the bottom that started hurting so they x-rayed it, and the dentist said it may have to come out and since it's right next to the only wisdom tooth I have left they would remove the wisdom tooth at the same time! That's five teeth! Good grief!!! But will be glad to have everything done. I'm unclear on the X Geva. Does it actually help fight the cancer or just strengthen my bones?
I hope everybody's had a good weekend.
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Someone out there correct me if I'm wrong, but these drugs [Xgeva (Denosumab) and Zometa] just help strengthen bones that are damaged by metastatic cancers, such as breast, lung, and prostate. They are not considered "chemotherapy" drugs even tho they have pretty much the same SEs that chemo has. Xgeva is given as a subcutaneous shot once a month and Zometa is given via IV infusion about every 3 months.
For more info, here's a link below.
https://www.oncolink.org/cancer-treatment/chemothe...
Hope this helps.
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Thanks Lita for the info. The reason I asked, is I thought that I saw someone make this statement on another thread that Xgeva had helped put bone mets in remission, and that confused me because I didn't think that Xgeva had the ability to do that. So thanks for the info and for the site I appreciate your help
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Babs I have a friend here in Canada that I met through the dragon boating she has now progression as well to liver. Her take on it is I may have lost the battle but I sure as hell didn't loose the war. That I'm going to win! That's the view you need to take in my books get your next treatment lined up and get at it. Sound like that's what your doing. 😊
This disease is such a head game every scan I think it's my turn and then it isn't enough to drive a weaker person mad. It's a good thing we are so damn strong eh?
So I noticed this rose walking my dog. The apartment gardeners have dug everything up but this rose refused to give in. Nature shows us the way over and over we just need to see it😊0 -
Xgeva was originally introduced to strengthen bones, but it has subsequently been shown to actually treat the mets. Basically the people who were on did actually get better. There are studies if you google, sorry as I don't have time at the moment.
>Z<
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Thank you zarovka, that explains that thread I had read.
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Wendy. You're so right!!!! And that rose is all if us ladies!!!!!Thanks for sharing👍👍👍
Just got tons of info from my mo When I go home from work tonight I have so much to read and digest. But honestly I like talking to her and hearing her viewpoint before I consider anything!
Bab
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Wendy - Love the rose.
Babs - I am very sorry about your progression, but glad that you have an MO that you seem to like and trust.
I am doing ok so far on the Ibrance. I have waves of fatigue here and there, but not too bad. I go on Wednesday for my second shot of Faslodex and a follow up with MO.
So, the bad news is, while my insurance approved and is paying for the Ibrance/Faslodex combo, they are denying coverage on the PET/CT that I had back in July that showed the mets in the first place. They say it wasn't medically necessary, and doesn't fall within their coverage guidelines as I didn't have symptoms suggesting recurrence. But, I in fact have a recurrence! I obviously have to appeal this and work with my doctor's office to document why she believed it was necessary. What really makes me mad is that when I went for the scan, they had supposedly gotten prior authorization. Had I realized that it might not be covered, I might have tried to straighten it out with the insurance before actually having the scan. Anyone have any tips for dealing with this for me?
Hugs to all!
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lemomdrop, I had a similar situation regarding radiation treatment and insurance coverage. I was told it was medically necessary only to receive a letter telling me they would not pay and denied prior auth codes. Sometimes it's a matter of recoding but not always. I had to file an appeal. It was a very lengthy, long, drawn out process but I won in the end. If you want to pm me I can give you some tips etc.
Love all the photos ladies.....
Babs, Glad you are receiving lots of info from your MO and are having open communication. Had a great talk today with my MO today in fact.
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Ok so today I got the info from my MO
The study she thinks might be good for me involves a drug called VT464. Has anyone heard of this drug?
Then the chemo cocktail she suggested include fluorouracil(Adrucil) methotrexate (Otrexup, Rasuvo, RheumatrexTrexall) cyclophosphamide (Procutox)
Any information on this?
Thanks
Babs
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NCT02580448
Babs, I wish I were more techno oriented, but above is the VT464 clinical trial number in clinicaltrials.gov. You probably already have this info but others may be interested as well.
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